A Stroke Survivor's Guide to Life on Life's Terms

June is the month I celebrate my dog.  (Love you Gus!)  And Dog spelled backwards is God.  So June is a month to connect with my goddog and that is always a good thing.

June, Goddog Tawpic for today!  Discuss…

Nancy, my Buddhist Reiki Master angel, taught me “if you really touch the pain, it disappears.”  The pain loses all power.  You stop carrying it with you, every step of the day, and move beyond it. And I believe her.  I believe because I have practiced and it is true, for me. My stroke taught me that I am not here to be miserable or tortured by things that have happened in the past.  I know that I am meant to be happy, every day.  I know that I am here, because I am meant to do something for others. When my goddog thinks I am ready, and strong enough to handle something, then I do.  Opportunities to heal present themselves to me.

I got through my stroke.  I survived.  It was hard and there was a lot of pain.  But I did it.  I was scared every second of every year for years.  But I fought hard and I made it. Before I worked with Nancy, I believed that if I just pushed hard enough for long enough, I would make it through anything, and come out the other side.  And I did.  But the pain came with me to the other side.  Some days it didn’t hurt and I didn’t even know it was there.  But there were always, “things in my past that I didn’t want to talk about.”  There were so many topics that I avoided with the words, “you don’t want to go there.”

But I guess I did want to go there. I wanted to make room for new gifts in my life, but there was no space inside me.  The pain would have to go,  I had no idea how to do that. I didn’t believe it was possible to live without suffering.  And I couldn’t ask anyone for help.  My greatest teacher and gift, my stroke of luck, taught me that I don’t have to live with pain everyday.  But I can’t do it alone.  I can only be rid of the pain, when I am truly ready to feel it and let it go.

My Goddog tells me when I am ready. I rely on a higher power to direct me on these things.  I kind of listen for the word from Gus, so to speak. Good friends and my husband let me know too.   It is so great not think that I can or should do this all by myself.  I mean, I got through my stroke. Yes.  But I didn’t get through the pain then.  I was consumed by the pain and fueled by it.  The same is true for fear.  I was so busy surviving, there was no room for healing.  I held on to the fear and pain because I had to to, they were keeping me alive.

My life now is greater than that.  I have room for love because I have truly touched a lot of the pain.  With Nancy I learned how to feel some of the pain from my stroke and then release it.   I have worked on other pains too, when the time was right and I was ready.

I want to be happy and healthy.  When I am given the nudge to do some work,   I have to cooperate. The pain is blocking me from good things in life. And I did NOT survive my stroke to wallow in pain.  Pain, for me, has to be fed and tended too.  I have to give energy to this beast to keep it going.  When I realize that the PAIN beast is stopping me from being free in my life, it gots to go!!!  I cooperate with the goddog by stopping feeding the pain. I can do that.  And then I have to be open to really touching the pain.  Nancy taught me, and I mean, REALLY touching the pain.  That is my part.  It is not easy and it is a definite “Ouchie.” But when I really do it…POOF, it’s gone.  The relief is immense. Love does flood in and heals.  Thank you Goddog for giving me the loving nudge.

 

June 12^th 2003

Coumadin levels are alternating between 12.5mg and 10mg per day.  I have a swallow study today at Radiology in my hospital.  They have to give me the test to see how I am doing.  I saw Carole two times this week and now I have the swallow study and that is it for the week. I am so scared.  I don’t want my progress to slow.  But without the work with my people at my hospital, what will I do?  I try to keep up with the exercises that they give me at home.  But I don’t know if I am doing it great and I don’t know what else I could do.  I am no expert.  And I really don’t like being alone so much.  I kind of like all the noise and smiles at my hospital.  I have always disliked cheerleaders, but I feel like everyone at my hospital is my cheerleader.  And I hate to admit it, but it helps me do better.

I don’t have physical therapy and I don’t have any more speech sessions this week.  The swallow study will show, Carole assures me that I need to continue with the speech sessions.  I know that and she knows that. I am not sure that they will be approved however by my insurance.  Every day I get more letters asking for more money and offering less approved therapies.  And school wants paperwork and updates too to show how I am doing and to prove that I really am as sick and unable to work as I am.  I was making so much progress.  But now, I am not doing so well.

I worry all the time at home.  That is the bottom line.  I look at my pupils more and more in the mirror and check with the light for reactivity.  I worry about the next stroke. I heard from my doctor that stress is bad for me right now.  So I am trying to be calm.  But I am so scared.  Why can’t I just blink and have it be April 2^nd and I can not be scared, for just one more day.

My landlord just sold my house to the young couple upstairs.  What will happen to me?  Where will I go?  I am not strong enough to move? Does the school system understand how big of a stroke I had?  How do I show them how much I have improved, how hard I am working, and that I still am nowhere near ready to work, but still want to keep my job?

Zoe is barfing so much.  Nothing works.  I know I have to let her go soon.  But when?  I don’t want to?  I am not sleeping well at all this week.  But I am trying.  I lie quietly in bed with the babies.  I have some warm milk before bed.  I bundle up and watch funny old sitcoms.  I lie there.  I lie there.  I lie there.  I try to rest so I can heal.  And I am so tired every afternoon. When I take Lola out for a walk and I come back upstairs, I have to stop on the landing halfway up and breathe for a minute.  I can’t even get up the stairs all at once.  In the morning I can. But as the day goes on, I get worse.  Lola even sits down and waits for me, with me. I hate it.  I hate me.   Even without my speech or physical therapy session to tire me out, I am so tired.  Why am I so tired?  Am I getting worse?  What can I do to feel better? Why can’t I fall asleep and just wake up and be all better? Why can’t anyone just fix me? No one gets what I go through. Why do I have to go through this?  What did I do to deserve this stroke? Why did I have to have a stroke? Why me?

 

June 12^th 2016

I didn’t sleep very good, again.  The last day of school is June 14^th and I know it is weighing on my mind.  I am doing what needs to be done, listwise to be ready for the end of the year.  But my kids are under my skin, in my heart and always on my mind, right now.  I know I have to let them go.  But it is hard and it hurts.  In August I meet my class and over days and weeks, they burrow their way into me.  I think about them and care about them and do for them and with them for 9 months. We are a team. And I am a strong adult that they can count on.  I got it.  I’m good.  I got the grey hairs to prove it.  All throughout the year, they are with me.  And I am proud to be strong for them.  But at the end of the school year, they leave. Just like that. My heart hurts. THIS Mother Hen gets wack-a-doodle every year when the empty nest is imminent. I know I have to let them go and make room for a summer where I get to focus on Jason and Tim. Once I am in the summer, I am good.  But this June thing, before school is over, is tough.

So I didn’t sleep well.  Rondo was trying to climb the blinds at dawn, which is 4:45am these days.  So after a bit of toss n’ turn, I got up.  I pounded the 3 mugs of water and took my vitamins and morning pills.  I turned on the coffee and jumped in the shower, well I didn’t really jump, but you get my drift.  There is a window in our shower.  And at this time of year, it is warm enough to leave the window open a bit.  I love looking out at sun and hearing the birds during the shower.  A cool gust comes in and hits me on one side while the hot water comes down from above.  I love it. Showering first thing today was a good idea.

The first cup of coffee was heaven, as always.  Never disappoints.  I dried my hair. And still no one, man, boy or beast was awake except me.  The on-going quiet was bringing my June-schoolish-antsiness back a bit.

I was also getting a bit freaky thinking about writing today.  Writing this blog is such a gift, but there are some parts of my story that I haven’t touched yet.  They are raw and the pain is right there. As I look through my big binder from that year and my day planner, the feelings come.  They don’t come back, they come.  I didn’t really feel the feelings then.  I got through.  I didn’t feel.  I couldn’t.  I wasn’t strong enough.  Now I can, but it hurts.

I have the binder in the study with the computer and, near my vanity.  It was Gramma Harriet’s vanity that was in my bedroom at her house down the Cape.  She had no use for a vanity.  But it was pretty and displayed things nicely.  In my house full of men, I got out the vanity a few years ago, for some girly power.  I put my makeup in it and every morning, I sit in front of it, and put on something to take the shine and pastiness off my face.  Today, after powdering, I turned and looked at my Stroke Stuff and thought of the dark dark days of June 2003.  The papers, notes, bills, and cards from then are so sad.  I kept everything in that binder.  I documented all.  And looking at it all, I hurt.  I cry.  My throat aches with burning tears and tightness at what happened then.  Let’s be real Rachel, YOU HURT BECAUSE THAT WAS YOU. AND IT WAS A VERY HARD TIME. You are not there now, but you are feeling it all now.  And you hurt. I know I want to write about this part of my journey.  I know I am ready.  But it hurts and it is hard and I am already in that June-School cuckoo time.  Emotions are running high and I guess I kind of want to run too.

But I am not running.  So what will help me this morning in this quiet weekend house. Baking might help. Baking always helps. I thought of the week ahead.  We don’t have any muffins left for breakfast this week.  And muffins for breakfast today would be good and it looked like all would sleep til the muffins were ready.  Gramma Harriet’s Bran Muffins were the comfort calling to me.  I didn’t have any bran cereal like the original recipe called for.  But I had an unopened box of Trader Joe’s Mango O’s, toasted oat cereal with mango puree and pieces.  The store is having a summer Mango Frenzy. I think I have bought about half of the hundred new products they have with mangoes in them.  All are yummy.  And today I would go to try to load up on the rest of the new products and try them out.  So I made a double batch of

My Bran Muffins, as Gramma Harriet called them

Mango Coconut Muffins, I call em today

1. Preheat the oven to 385 degrees.

Ahhhhhhhhhhhhhhh, I can take a deep breathe with the sound of the oven igniting.

2. In a big bowl, put one cup of wheat germ and 2 cups of Mango O’s.  Add 3 cups of milk and let it sit to soften the cereal a bit.
3. Melt/liquefy 2/3 cup coconut oil in the microwave.  Mix in 2 eggs and whisk a bit.
4. Add oil and egg to the milk and cereal mixture.  Mix.
5. Add 4 cups of spelt flour. (Spelt is the ancient grain that hasn’t been messed with.  Good stuff.) Add 2 TBSP’s baking powder and 1 cup of sugar.  Mix well.
6. Spray 18 muffin holders with coconut spray.  Fill with the batter.
7. Bake for 20-25 minutes.

The smell of the baking muffins made me relax and smile a bit as I washed up the dishes.  The mens got up, ate the muffins and the day moved on a bit sweeter than it started.

We would go to Trader Joe’s like usual and maybe I would wait and write on Wednesday after school got out.  Maybe today would be about other things.  That would be alright.  We would see.  Jason and I called the Cuzzin in the car on the way to the store.  We call every Sunday and here her news.  She is going to go kayaking today.  That is great.  We have two kayaks here at the house. This summer, we need to take them out. Jason remembered to bring his joke book in the car and so he could tell Cuzzin some good ones this week. We got to the store long before we were done chatting.  The sunroof was open on our parked car.  Jason read a few jokes and stood sticking out the sunroof for a bit while the Cuzzin and I chatted some more.  With the sun rising higher and bellies starting to get hungry again, we said Goodbye to the Cuzzin and headed into Trader Joe’s.  Sure enough, they had more droolworthy Mango products that I just HAD to try.  I HAD to try the licorice type Mango bites, yum.  I HAD to get stuff for my cauliflower, tastes like potato, salad that I would make today.  I HAD to get treats for Wednesday in Wessyfoo after school gets out.  And I HAD to get hotdogs for Gus’s birthday on Tuesday.

At the checkout register, I got busy bagging all our goodies.  I love looking at the food again and seeing what I really get to bring home and eat.  Yum.  Jason was sitting on the window ledge with the cheese curls he picked out for the ride home.  He always picks out a snack to eat at school and one to eat in the car ride home.  I was busy bagging and chatting with the man working the register.  He remarked on my t-shirt.  I guess I had my stroke on my mind today and I was working with it when I got dressed today.  I put on my FAST t-shirt that Tim designed and had made for the Heart Walk.  (Maybe it would help me touch some of that pain that was coming up these days. Maybe, I thought) It has the logo I designed on the front: “spot a STROKE, F.A.S.T.”

The man said he didn’t hear what I had just said because he was focused on my shirt.  He had a childhood friend that he was so close to. (I stopped packing the food.)  He said that his friend had a bad cut on his leg and when it was healing, a clot broke loose in his leg and traveled to his brain.  His friend had a big stroke.  He was paralyzed on the bottom half of his body.  He remained paralyzed until he died. He died young, too young. (I put down the food back onto the counter.)  He said his friend would have been in his early 30’s when he had the stroke.  I listened as he told me how hard it was when he would go home to visit his friend.  His friend was funny and told jokes and still had a sense of humor.  He said his friend couldn’t speak but he had an adaptive thing that would write down or speak for him. (I choked back tears in my throat at how lucky I was today.  I burned with how brutal strokes are.) Stories about fishing, his friend wrote them after his stroke.  They had done a lot of fishing together in their childhood.  The stories written were funny. He would go to visit his friend a lot at first, but less as time went on.  It was hard.  But the stories were still online and he still read them. He stopped scanning my goodies and let the words come out.  This man’s eyes were sad and smiling as he told me his friend’s story. (I listened.  I was witness to his story.  He could tell me and he knew I understood.  I could bear it.  I got to hear this man’s story of stroke and knew I was exactly where I was supposed to be.  A real moment of healing was happening for him and for me. I had sort of created it.  I was definitely grateful for it. This was what I was meant to do today.  I looked at my eyes in the rear view mirror on the way home.  My eyes were not sad anymore and my smile was getting bigger.)

 

 

–

Today’s Tawpic for Coffee Tawk:

  The legacy of Muhammad Ali is vast.  We could tawk every day about his wonderful one-liners, philosophy of life, professional and athletic greatness, political activism and spiritual lessons.

Since I have to narrow the field, just for today I pick this one-liner and a song inspired by him. There’s a powerful message in the one-liner. I wonder if the meaning changed for Ali at different times in his life.  It certainly has for me, reflecting on his words. Before my stroke, I would have told you about the list of goals that I made when I was 14 years old.  I had a master plan, written in stone. I would graduate college at age 21, be married at 22, have a master’s at 23, be a lawyer too, own a beach house and a country house by 25, have 2.5 children by age 26, and get my first Oscar or Emmy by age 30.  That was the plan.  Those goals were a source of focus.  But when I wasn’t married at age 22, what then? I extended the deadline to 30 to keep sticking to the same goals.

My stroke hit at age 30 and blew that plan to smithereens.  A stroke was definitely NOT in that plan.  And then I had goals born of crisis: I will survive the nights in the ICU, I will get out of the “home,” I will swallow, I will go home, and I will drive my car.  And I kept going with passion and GRIT to accomplish those goals.  I got very, very lucky. But what happened when I DID indeed do all those things, what then?  Crossing things off of some ancient list or beating the medical odds were powerful motivators.

When I came out of physical crisis, I didn’t fit anywhere on the list of goals from my childhood.  It’s like I hadn’t written that list, someone else had.  I was different.  I needed new goals.  But I didn’t know how to do that.  I didn’t know I could.  I was lost.

Goals certainly keep me going now.  But they are not my goals coming out of my crazy brain, made in isolation and written in stone.  My main goal today is to be the healthiest Rachel I can be.  As long as I do that, it is a good day. The ways of accomplishing that goal change, a lot, often.  I surround myself with wise people who tell me what is healthy for me.  I have to listen.  I have a voice within me that dreams big.  It yearns to do the most creative (and lunatic) things.  I have to make room for them.  I am connected to a powerful source of energy, flowing all around me.  I have to feed it.

I don’t make many goals today, but I have a lot of them.  I work on that one first goal about being healthy today. (I think I learned that one the hard way.) The rest of the goals seem to come to from a source. When I run my life, it runs aground.  When I listen to the little voice inside, or big voice outside, when I cooperate with what the day gives me, I believe that is what I am meant to do.  My job is to the greatest work I can with what the day brings.  It truly is that simple for me now. It is not complicated.  (I don’t do well with complicated now.)   Each day is a gift. I need to remember that. Every day is loaded with ways to help others, be of service, create something, and watch something grow.  I mean, look at my life since, and I believe because of my stroke.

I am having a hard time being clear right now. Sometimes I get so passionate about something that when I try to explain it, I end up babbling.  So I am going to bring in my second Ali inspired thing for today to help.  We all know his line, “I am the Greatest!”  It inspired a song.  I play this song to my students every year.  After we hear the song and read and reread the words, we have a dialogue about the ideas it evokes.  The conversation is called a Socratic Seminar.  It is a way of getting kids to dig deep, think hard, and create great understanding of hard text, by talking together.  The great understanding does NOT come from one mind.  It is built together through the sharing and listening and expanding on the ideas of many.  Text is tough to understand for many.  And in 6^th grade it might not seem like a cool goal to reach for.  But this song is cool.

Every year, I watch the kids as they read the lyrics and hear the words.  What do they think is the greatest thing on earth?  What are their goals for their lives?  Do they even know how to dream? What matters to these kids?  What will ignite their passion to do the greatest things possible? Do they see how great they are? Do they know they are the world’s greatest, in my eyes?

The World’s Greatest

By R. Kelly

I am a mountain, I am a tall tree, oh I am a swift wind Sweeping the country

I am a river, Down in the valley, oh I am a vision And I can see clearly

If anybody asks you who I am, just stand up tall, look ’em in the face and say

I’m that star up in the sky I’m that mountain peak up high Hey I made it, hmm I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it, hmm I’m the worlds greatest

I am a giant I am an Eagle oh I am a lion Down in the jungle I am a marching band I am the people oh I am a helping hand I am a hero

If anybody asks you who I am, just stand up tall look ’em in the face and say

I’m that star up in the sky I’m that mountain peak up high Hey I made it, hmm I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it, hmm I’m the worlds greatest

In the ring of life, I’ll reign in love (I will reign) And the world will notice a king (oh, yeah) When all is darkness, I’ll shine a light (shine a light) And the mirrors of sucesss reflect in me (Me)

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

I’m that star up in the sky I’m that mountain peak up high Hey I made it I’m the worlds greatest

I’m that little bit of hope When my back’s against the ropes I can feel it I’m the worlds greatest

(He’s the greatest) Can you feel it? (Can you feel it?)He’s the greatest (He’s the greatest)Can you feel it? (Can you feel it?)I saw the light (He’s the greatest)At the end of the tunnel (Can you feel it?)Believe in a pot of gold (He’s the greatest)At the end of a rainbow

Songwriters: ROBERT S. KELLY

https://www.bing.com/search?q=video+r+kelly+the+world%27s+greatest&qs=NM&pq=video+of+r.+kelly&sk=AS3SC1&sc=5-17&sp=5&cvid=18518CE2F5814682B05620453A072EDE&FORM=QBRE

 

I guess that goals keep me going forward, to be the greatest I can be, today.  What about you?

 

June 7^th 2003,

This week I am alternating between 12.5 mg and 10mg of Coumadin per day.  The levels are pretty erratic.  My body doesn’t seem to be settling down with what I am eating and drinking, balancing my levels as well as when I was on the cans of formula.  It is hard to know what to do.  I want to eat bananas.  They are simple and sweet and smooth to swallow.  But I can’t eat them, too much potassium.  So I don’t even buy them.  But I am fixated on them.  That is what I want to eat.  The rest of food, I don’t really care about.  My jaw is so messed up and chewing is a real pain.  It’s so weird to not care about food.  Oh well. Cans are easier.  And I am tired.

I am swallowing the cans fine and that is good enough for me.  I still have enough cans left for a couple of weeks.  I guess they really didn’t think I’d get my swallow back this soon, if at all.  I had Carole four times this week.  We did good work with the DPNS and she has given me a lot of exercises to help with the facial muscles that are so tense and painful.   I like the morning appointments that I have booked.  I have to get up early, like I did when I was at school every day.  My face is more relaxed in the morning and I think I get the best out of the folks at my hospital in the morning.  I am the first patient and I like that. They have coordinated two PT appointments with Kelly this week for me.  I can’t believe that I have seen her 6 times already.  We work a bit on the balance and my gait and my strength.  But she has really focused on the TMJ garbage in my jaw with massage and stretches and stuff.   She knows what she is doing.  I have an hour with Carole each time and only 30 minutes with Kelly. But for my 30 minute sessions with her, it’s like my body really wants to cooperate.  I mean it really relaxes and then tries to practice what she is teaching me.  For a minute I feel pretty normal.  I try to keep it up the rest of the day, but by noon I forget to be good.

I am learning a lot about insurance lately.  I got some help with my grievance about speech therapy.  I found out that someone can be my representative.  A great guy here at my hospital, who knows the system better, will communicate with the insurance company on my behalf.  I got a “Personal Representative Authorization Form.”  We both filled it out and now he can help.  I guess it pays to come early to my appointments and chat with the folks that work here.  Now he will fight on my behalf.  I am so tired.  I haven’t got much fight in me right now.  What’s the point?  I have been fighting so hard for me and I can fight so much harder than any other stroke person I have heard about.  I know I should feel lucky.  But I don’t.  What am I fighting for?

Kelly has to re-evaluate me after the 6^th visit.  She has to spend our time writing notes and filling out paperwork.  I have achieved some goals in our sessions.  But not all, and I really hope they approve more sessions.  I have more sessions allotted by my insurance, but they have to be warranted in the eyes of the company.   It is only 30 minutes of their time and money. I have had only 3 hours total of Physical Therapy, just 3 hours. That math is inconceivable to me.    And yet there is so much paperwork and authorization that has to be done to get that 180 minutes for this one patient.  I really get a lot out of my work with Kelly.  In that 3 hours I have gotten stronger.  We set goals together for me, and I am reaching those goals.  It feels so good to succeed. I feel almost comfortable in my body when I am working with her, almost human.

But the visits are so few and so short and so much work to make happen.  Each day it’s like I get less and less help now.  But I am not getting more and more better every day.  I get better and I feel better when I am working with them on a goal, here at my hospital, safe. When I come home, I don’t really have a goal other than taking care of my babies. I pay bills and do laundry and this week I got the car inspected too.  I took the babies to the vet last week, Zoe is doing really bad with the barfing.  But she is impossible to medicate.  I thought I was a bad patient.  I am a saint compared to her.  I tell her she will feel better if she takes the medicine.  I feel her it is only for a few days. And then she will be better.  But she claws and fights.  I tried pills and liquids.  I try zipping her inside my duffel bag with only her head sticking out so I can get the medicine inside her.  But she can still bloody me with her teeth and I can’t get the medicine in her. I don’t know what to try next.

I called a few friends from school this week to chat. They are busy with the last push of the school year and getting ready for summer vacation with their families. My college sister/friend and her beautiful baby came for a visit.  This time I got a few snacks in the house for them.  I am going to go to Mom’s to watch the Belmont Stakes this weekend.  And soon she will go on vacation and I will watch her kitty while she is gone.  I do those things, but I get tired so quickly and parts of me hurt, so much.

I can sleep more easily right now with the medication they give me. And sleep is what I want to do.  It passes the time between my appointments more quickly.  And for a few hours, I stop thinking and worrying.  I stop asking questions: why I had to have this stroke? Wasn’t I too young for a stroke? Wasn’t I too healthy for a stroke?  What caused this stroke? Why did I lose my swallow?   What if I had the stroke at home? Wouldn’t I have died?  Why did it happen at my Doc’s office?  Why did she save me?  Why can’t I move my jaw?  Why can’t I eat bread?  Why aren’t I happy to be alive?

And I am so tired of thinking about all this cr#@ and worrying about more strokes and grievances and medicines and money.   I am obviously not teaching this year. School is out soon.  I have more speech and PT for now.  And I can’t go far from my hospital.  It is not safe for me, I think. I need to be near them.  I have another MRI coming up soon.  Everyone I know has their own plans and jobs and families to take care of. Their lives are going forward on one path.  I am not on that path.  When I am asleep I stop thinking about this stuff, and there is no torture.  And when I sleep I stop waiting for answers that never come.

 

June 7^th, 2016

The garden is coming along.  I can’t believe how green everything is.  The bunny has not gotten any of our plants so far and Gus has not gotten the bunny.  All is well.  The clematis has climbed almost 5 feet up its’ pole.  There are tons and tons of buds.  Tim hooked up our rain barrel.  He cut the gutter and the diverter thingy sends the rain off the roof right in.  I checked the barrel this morning and after a good rain over the weekend, it is almost full.  There are tons of small strawberries on the plants in the raised bed.  I planted them last year and only got a few berries.  This year I added food and soil to the bed.  And I have been weeding and watering. I am trying to channel the energy and ways of the strawberry farm that we go picking at every June.  Guess what? It is working.  This year, our plants look a lot more like their plants.  Who knew?

I added a Bee Balm and a Black Eyed Susan to the wild bed in the back. The garden was here when we bought the house with some iris and bleeding heart in it.  I added some from Wessy and local nurseries over the years.  I want them to grow like they do in Wessy, lush and colorful.  But I think there are too many choking type weed/wild flowers in my bed.  So when I put the new plants in this year, I got in there and weeded out a bit.  I stood like my aunt, grabbing weeds with both hands, knees well apart and bum in the air.  I was stable and got tons of weeds in one go.  I did apologize to the plants I pulled up.  I am not sure what the bum up or saying sorry does, but if I want the garden my aunt has, I better do what she does.

I added another row of twine low down on the tee pee for the climbing plants.  They all hit the first level of support.  But there was a big gap to meet the next level.  So I added more twine and sure enough, the beans and peas are already hitting it.  I think there are buds on the beans and spaghetti squash plants too.  Amazing.  It’s working.  I am doing the work, making changes that I thought would help and the garden is much healthier and hopefully productive.

The garden is absolutely healthier today and me…not so much.  A few years ago, I found a stinging nettle or poison ivy/oak in the yard.  By “found it,” I mean that I broke out in blistering bubbling, itching, oozing and festering ick after working on the yard one day.  I had never gotten hit so badly with the rash reaction.  When a blister broke out on my face, I freaked.  I wasn’t suffering well, or quietly, with the itching on the rest of my body either.  But when it hit my face, I hit my doctor.  She put me Prednisone.  She said that the allergy to the plant was in my blood because of all the itching and scratching I had done and that’s why it popped out on my face even when I hadn’t got the plant on my face and it was days later.  She said this heavy dose steroid would do the trick, but said I better wear gloves and long sleeves from now on out.  I took the horse pills and the rash did start to clear up quickly.  I felt bizarre taking the pill, kind of speedy and out of my body a bit.  I didn’t like that feeling. But I didn’t like the rash more, so I took it.

Evidently my body didn’t like the medicine even more than it didn’t like the poison plant.  The day after the medicine was over, I almost went to the ER.  I was breathing so bad, hysterical almost.  My head felt like it was exploding. My whole body was jigging around, almost convulsing.  I was totally sure I was stroking out.  I got so scared. I had not even contemplated the ER in almost a decade.  Stroke was not an option for me now.  I was healthy.  But this was bad.  My body was screaming at me and I couldn’t stop it.

Tim was so calm as I was freaking out that I knew he was out his mind scared too.  So I sent him to Rocky’s on some errand for birdseed, I think.  And I called the Doctor.  It was a Sunday, but the on-call Doc called me back quick.  It was the medicine.  My body went beseek coming off the steroid. And when I felt so beseek with the heart and breathing, I hyperventilated.  Not good.  I just had to calm down and ride it out.  I was ok.  I was not stroking.  The rash was gone.  And I was fine.  My body was exhausted, detoxing from the steroids and needed to rest for a day.  But other than that, I was good.

And every year since, I have been good about wearing gloves and long sleeves when I work in the yard.  But honestly, I have cut back on “the work” out of fear.  I haven’t really done much weeding and tending to the yard, because I was so afraid of reacting to some plant and having to take that medicine.  So the garden grew lush, but not with the beloved beauties or edible yummies.  They were choked out.  This year, I have a new mind set.  It is a family garden and we are doing things differently.  Our goal is to really be able to eat out of our garden.  And we have been working towards that goal. And so I have been weeding diligently and tending too.   And it is working.  And I wore gloves.

I have been careful, but not too careful.  Sometimes, I have worn short sleeves and touched my face and not taken a shower after gardening and not changed all my clothes. And so this year, the blisters came back, on the bottom of my left forearm and on my left knee too.  (Of course it came on my left side, where I can feel it itch.  Of course, naturally.)  Ick! Blech!  And Oh no! I was at school, felt the itch, looked down and there they were.

Oh yes they did.  Something in my loving garden, got me good. But this year, I cannot take the Prednisone.  I did not survive my Stroke to feel that way again.  No sir-ree-bob. Okay Rachel, so what now?  Plan A was to garden in bliss.  Plan B brought garden poison into my body.  Plan C will not include steroids.  What is Plan D?  I went right to the pharmacy and got new Cortisone cream and fresh calamine and took a Benadryl.  With the itch addressed mercifully from Plan D, I set forth on Plan E to try to prevent what might get into my blood stream. And while I am at it, I think about Plan F to try to help my body become less intolerant and more immune to the nasty garden vultures. Tim reminded me to pull out Google and check with this Doctor I follow.

So I did, right away.  I found out that Vitamin C can be increased for treatment and prevention of allergies. Check. I found out that my Fire Cider tonic with the garlic and apple cider vinegar can help with the rash too.  I am constantly amazed at all the things apple cider vinegar can do that is good for me.   Check.  Running my arm under water as hot I can stand for as long as I can stand it, helps too.  Ouch, and check.  I told myself that this would work.  My body is healthy and it will heal.  Check!  And then I told myself again.  I am not where I was then.  I have to really believe that this will work.  I have to visualize myself without the rash, and not on the steroid.  And I have to give it time. Poison ivy takes 10 to 14 days to run its’ course for any human.  Why should I be any different?  I have to live with it, treat it and get over it, just like everybody else.  Check!  Guess what?  It’s been a week. It is working.  I am healing. (I have not been totally comfy.  I know my body is fighting. It is exhausted and run down.  And my mood?  We could call it “moodier than usual,” and leave it at that. I am not sure my family would leave it at that.)  Over time, I have learned a bit and changed some ways and am healing.  And the garden has changed too, less weeds have made space for our flowers and veg to flourish.  It’s all worth it.

The coming summer season has brought the garden and me, health struggles and triumphs. But there has been another challenge for me. This one goes to my Foodie side. In June Madulka’s IceCream, on Lake Quinsigamond, opens for the season.  They opened a couple of years ago and our friend, Lucky, introduced us to their wonderful yumminess and fantastic setting.  They are right on the lake, so you can come by car or boat to get the treats. And while you eat, you can watch the water, boats and waterfowl.  I love it.  They have all the great old fashioned flavors of ice cream and ALL the new and inventive ones too.  Their prices are steep, considering I still remember getting a huge cone at Friendly’s when I was a kid, for way under a buck.  But the size of the scoop is worth it.  They don’t skimp.  They charge a modern fair price, but give an incredible, traditional, seriously good sized scoop of absolutely awesome ice cream.

Anyway, Lucky went there one time and had a banana split.  He said it was so big that he couldn’t finish it.  He is a smaller, leaner gentleman.  But he is also a foodie and I know he can go through a half-gallon of ice cream in two evenings.  He was full of it, I said.  The sundae couldn’t be that big.  He wasn’t serious.  I could do eat it, I said.  No problem, I said.  His Irish eyes twinkled and the challenge was made.  Lucky challenged me to eat one of their Banana Splits all by myself.  It was the end of the season and I was on a diet, so he told me we would wait til the following summer. He told me I would have to “train” for this challenge over the course of the year. Really?  Does he know about my swallow and my appetite?  Does he really underestimate my love of sweets and my sheer stubbornness? Right….I gave a sassy smirk and agreed.  We shook on it.

The next summer, I was on a much more serious diet.  I was suffering as I do, when my weight is too much.  It is my own fault and in the summer, I pay the price with such swelling in my legs I can barely walk.   I didn’t survive my stroke to suffer, so I got serious about taking off the weight.  I had to.  I couldn’t say that everyone gets fat when they get older.  I saw my Dad, who is decidedly not fat anymore.  He is decidedly skinny.  He was nearing 80 years old and had blown my theory.  My competitive nature and the desire to make my Dad proud, kicked in.  I did what he did.  I really went off sugar and carbs. I did lose weight. And I knew it was not time for the challenge.   I did not even try the Banana Split Challenge, and Lucky didn’t ask.

But right after Christmas, when I was well back on the sugar and carbs, Lucky spoke up.  He asked if I was going to finally try to eat the sundae this summer or would I admit defeat? Game on!  Ha!  I had a plan and a mission to wipe that smile right off his face.  I had a goal of meeting that Banana Split first thing when the shop opened.  And I sure wouldn’t need to “train” to do it!

One day in May, Lucky told me that Madulka’s had opened.  He had been there and had a mere Strawberry Sundae.  He likes it.  It is only two scoops and it fills him up to the limit, he says.  Wimp.  I sneered and smiled smugly and we set a date for the showdown.

On the given, holier-than-hot-not-even-truly-summer-but-gonna-sweat-from-places-you-didn’t-know-you-had-day, we met at high noon for the showdown.  I hadn’t trained and I wasn’t worried, until I saw the Banana Split sundae and sat in the sun to eat it.  Then I was worried, and nauseous.

It didn’t really look that big, but the weight of it.  It weighed a ton.  Seriously.  And there was a huge banana.  There were three scoops of ice cream staring at me.  I already forgot what I ordered, it was so hot I was getting ready to puke.  I remember ordering Moosetracks. And maybe I got Milky Way and I think the third scoop might be cookie dough related, but I am not sure.  The scoops are easily the size of a pint of ice cream.  Ok, maybe they aren’t really that big, but the sun is burning my back as I sit here and making objects in front of me appear larger than they really are.  I see strawberry sauce and pineapple sauce on top of the great domes of ice cream.  And I am not really a fruity ice cream gal.  I keep the fruit desserts separate.  When I have ice cream, I go for fudge and mint, whipped cream, cookie dough, chocolate chip, chunk and JIMMY!  But the Challenge includes these fruity things.  Right now, the whole dish is not very appealing.

At home, Jason had said that he would get three scoops of icecream too, to be supportive of me.  I had laughed and said thank you, but no way kid.  He heard me, but didn’t totally abandon his personal mission. At Madulka’s, Jason took advantage of his distracted parents.  He stepped up and ordered a DOUBLE scoop of Cotton Candy Icecream.  Yup, we bought and paid for a seven year old to have two big scoops.  Our foodie son, sat on the shady side of the table with Lucky and ate the lot. Not a problem for him. (I admit I was very proud, and sickened.)

I thought Tim would order a double too.  That was his usual.  But no!  He ordered a single, lonely scoop of ice cream. Maybe he was sick from the heat too.  Nope.  That wasn’t it.  He was leaving room to help me out.  He was thinking of his poor, insane, soon to be very sick, wife.  Awwww.  What a sweet husband I have!  But, he’d be a sweet and very hungry husband soon.  I was determined to push through to victory, whatever the cost.

But as Jason finished his double scoop of cotton candy, and Lucky wrapped up his strawberry Sundae and Tim put his napkin in his napkin in his empty bowl,  I felt my zeal, waver.  And when Tim and Jason got up and threw all their trash away, a voice in my head starting talking to me.  And when I tried to scoot down the bench into shade and could barely move due to the load in my gut, I started listening to that voice and coming up with a new plan.

I could finish.  Yes.  I knew that I could physically lift, insert and swallow all the contents of the bowl.  But I also knew what lay beyond the empty bowl.  Beyond victory over Lucky, was a day and probably a night of ick and sick.  My body would get back at me and the image of a beached whale that can’t make it back out to deep water, but just writhes and moans, helpless on the sand, waiting for death, came to mind.  And what would I win if I finished?  I am highly motivated by rewards and prizes.  If you don’t offer me a prize, I will come up with my own incentive to work towards a goal.  But in this case, if I think about it, there would be no prize, other than being able to say I had won. And the certain physical agony seemed more punishment than prize.

What if I lost? What would be wrong with saying that I couldn’t finish the sundae either?  In the end, I was the same as Lucky, not different. Hmmmm.  That wouldn’t be a bad thing. I wouldn’t be alone in my defeat.  I’d be with a friend. It would be a blow to my ego, to be sure, to have boasted and bragged for 2 years, only to admit defeat.  But I would recover. And I wouldn’t be sick. And I wouldn’t possibly be sending quite an insane message to my son about things to try to be the best at. (Somewhere, in a healthy corner of my mind, I knew that trying to eat this much ice cream just because a friend dared me to, was not a totally educational opportunity or moral parenting victory.)

I was making good strides on the mountain of ice cream.  I had momentum on my side.  I loaded and lifted and shoveled it in.  But as the bites became smaller and the pauses between each grew longer, I thought what if I changed the goal?   What if I made a different ending to the story?  I could be sane and stop when I was full.  That is a healthy message to send.  I could make the goal to share with my husband. I could get a spoon for Tim, so he could enjoy a real amount of ice cream on the hot day too.  I could ask him to help me.  Even though I am asking for help to accomplish a truly cuckoo goal, it is still asking for help.  It is still the hardest thing for me to do.  It would still be good practice for becoming more dependent on those who care about me.  It would be a less defiant act than I tend to make.  It would be a big change in my pattern.  And it would prevent me becoming disgustingly sick by my own hand. Next year, the goal could be to come here on the day it opens.  That would be a different kind of goal. It could work.   All these options were before me. 

I chose the 2^nd spoon, the losing and yet winning spoon. Jason got the second spoon.  And before I had reloaded a small bite for myself, Tim had dug in.  Mercifully for me and deliciously for him, we shared and quickly found the bottom of the bowl.

Teamwork paid off. Jason complimented us on a job well done, still claiming that he could have eaten the sundae single handed.  Tim took him by the hand and set off to get the AC blaring in the car before I got in. I swung my legs over the bench, took a breath and stood mostly upright.  Slowly, I waddled to the car with Lucky.  He patted me gently on the shoulder, grinning from ear to ear.

 

 

 

 

 

 

Last day of Stroke Awareness Month Tawpic:

I love alliteration!  At this time of year, I can have a hard time with those 3 P’s.  Probably, I am doing well with one of them.  I think “persistent,” is a passing muster trait for me right now.  But the other two…tough to say.  I have come a long way with all three in my life.  But right now, you see there is a lot of pressure to complete an overwhelming number of tasks and assessments at the end of the school year. I live by the academic calendar; August to June.  At 43 years old, my year still follows the patterns of children.  For those not on my schedule, maybe you can relate to how you feel on the day after Christmas?  Maybe.  Emotions run high, excitement for summer vacation can be matched by fear about the coming year in a brand new school and what it will bring.  Absolute exhaustion, at the cellular level even, is the norm for me.   It takes all I have to focus my energy on the “positive.” Negative things can be so alluring, distracting and seemingly easy to handle at this time of year.  “Patience” is a virtue I both lack and pray for countless times each day.  The horns of quick-tempered sarcasm grow quickly on my head.  I joke about filing them down each day so no one can see them and I am less likely to act on them.  But they are there.  It is harder than usual to remain calm in the hot weather with the physical stress, and then compound it with the emotional strife of hot headed friends and students around me.

I find it easy to be “persistent” about things that I want to do, but tough to plug away at the necessary things that HAVE to be done on my list. The garden beckons.  Cups of tea call to me.  Laundry, house cleaning, and report cards are as attractive to me as the plague and so I summon all energy and rational thought to bring those items out of quarantine and put them in the rotation of things “to do.”

I am more likely to find positivity, patience and persistence for the must-do parts of life, if I find a way to make them into a game, or sweet. I mean, I did not survive a Stroke to be miserable.  I have been there and so totally, done that.  This is my mantra.  And practice makes me purrfectly happy.

Over the years, I have accepted the grown up, responsible parts of life with more grace, I hope, and less tantrums, I think.  I am lucky to be healthy and blessed by the work in my life.  I have great opportunities to help others, every day.  And most of the time, I have the 3 P’s in pretty good supply.  But at this time, of this year, stores are low. Today I pick making things sweet, as a sure fire method to practice the 3 P’s more successfully.  I am going to add a P to three listed previous.   I will be positive, about Peanut Butter.  I will be more patient, because of Peanut Butter.  And I will be persistent like the stick-to-the-roof-of-your-mouth nature of Peanut Butter.

The Power of Peanut Butter will see me through today in a much more positive, patient and persistent pattern.  I have a tried and true Peanut Butter Cookie recipe.  And I will add two more types of Peanut Butter products to the batter.  The result, with any luck, will be a cookie that heals all that ails me.  It will endow me with the Super PB Power to enjoy, as I should, the day before me.

The recipe is classic.

1. Preheat the oven to 375 degrees.  Select two mix-in PB extras.  (The idea of the mix-in comes from a favorite ice cream spot of my childhood.  Steve Herrell’s in Northampton, MA was the original for letting ice cream lovers select from a dynamic assortment of ingredients to be smooshed into their ice cream.  The Herrell’s ice cream employee would gracefully, artfully mix a big scoop of your selected topping into a robust scoop of your fave ice cream, on a marble slab, in front of you.  It was personal, special and magnificent and they did it first!)

Today I pick a bag of chocolate covered, peanut butter filled pretzels.  I pour the contents out and rough chop them for the batter.  My second mix-in is the larger Dark Chocolate Peanut Butter Cup.  All the paper wrappers must be peeled off and then I will rough chop them.  Jason and Tim take 2-6 cups each, in exchange for removal of paper wrappers.  I wait patiently, with the big knife in hand, for them to ready the PB cups.  

(The practice in patience waiting for the mens to prepare the cups has me in better space already.  Or is it the big knife?  No, it is the chocolate, dark and pure and perfect that I smell and taste and share with my beloved ones.  My mood is definitely more positive.  It’s working!)

 

2. Cream 1 cup of unsalted butter with 1 cup of smooth peanut butter, 1 cup of white sugar and 1 cup of brown sugar. Beat in 2 eggs. (The smell, sight and texture of the butters and sugars mixed together into one golden cream sends a stabilizing rush of endorphins through my body.  I dip my finger into the mixture.  The taste seals the deal.  The magic is working.  I am storing the POWER of PB into my “good memory department” to call forth tomorrow at school, when my positivity, patience and persistence may be tested.)
3. Add 2 ½ cups King Arthur Flour, 1 tsp. baking powder, ½ tsp. salt and 1 ½ tsps. Baking soda.  Stir the dry ingredients in well to make a creamy smooth mass.  Add the mix-in extras, and mix to perfection. 
4. (I sample the batter and so does Jason.  He loves to help in the kitchen right now, for some reason.  Don’t question it Rachel.  Just enjoy.)
5. Scoop a wad, a righteous proud clump of glorious goodness onto a cookie sheet.  (Don’t be shy about the amount.  Don’t be cheap.  Celebrate.  Think Big!)  Roll the sacred stuff in your hands forming a magnificent ball.  Press patiently and persistently on the ball to flatten it a bit.
6. Bake the not overcrowded sheet of cookies for 12 minutes.  Be positive that as the timer dings, the cookies are perfect. (PB cookies should not be overbaked.  So you don’t want to wait til they look dry.  That is not a good kind of patience.  If they look a teensy bit damp and the timer dinged, if they are getting golden around the edges and the timer dinged, be positive.  They are glorious.  Take them out.  Let them cool.

Now is the time for patience.  Nothing burns your mouth so good as over-hot PB cookies. I don’t know what is in the nature of the PB that it would burn so particularly bad.  But it does.  It singes the palate for a week solid.  What a waste. So, now is the time to practice the patience.  And oh, the reward.  The smell of those cookies and the sight of that dough and the mixed-in bits, is a brilliant reward in itself.

The odors coming from my kitchen right now should be captured.  They should be bottled.  I would wear it for perfume.  I would spray it all over and wear it to school.  The aroma would keep me in positive and patient spirit.  The strength of the aroma would persist with me all day, reminding me to be sweet and enjoy my time. Ooooh, what a perfume product that would be.

Well, perfume aside, and the cookie in front of me, it is time to take my medicine.  Cookie in front of me, becomes cookie inside of me.  I tell you, swallowing really never gets old for me.  13 years later and it still is a thrill.

 

Problem solved. The Power of Sweet Peanut Butter+ Cookies reminding me how to BE positive, patient, and persistent, just for today.

 

 

 

 

May 30^th 2003

All this week, the Coumadin dose alternates between 10 and 12.5 mg/day. The cold on my right side is still savage.  I tell them that it hurts me when I see the doctors and therapists.  I even called the nurse on Thursday, just to let someone know that it hadn’t gone away.  I was still here with the same frozen side. But so far no one really gets why this is happening. And as it doesn’t seem to impede my basic daily functioning, it doesn’t attract a  lot of attention from them.  They tell me it will pass.  They tell me to call if it doesn’t go away.  But they can’t really do much else. I hear the sympathy and I know they care, but just want to be warm. The long hot showers at night back the pain off for a bit.  Since I don’t sleep much, I might as well try to temper the cold. Ha.  Ciro sits on the sink and Lola  curls up on the bath mat for the duration of each shower.  It feels good that they are near.

The swallow is still working.  But I am not near eating bread or bread products.  It is just not strong enough. I am working hard at Speech 4 times this week. I am working hard at Physical therapy twice this week too.  I am doing the facial stretches, massage and making my face into a big balloon at home every day.  I do some exercises with the 1 pound hand weights to strengthen my arms and work on the gentle lunges and use the exercise ball that I just got to try to get more stability in my core.  (I really want to be able to look normal when I walk, without dragging my foot, tucking my bum under and staring at my feet.  Right now I walk like my grandmothers, except they are faster.) Sometimes the big ball gets away from me and rolls into another room.  Inevitably Zoe is near, and she runs away as if the ball were chasing her.  Silly Zoe Bug.  I really am trying.

But I am not getting better.  I feel it.  In fact, my face has gotten so much worse.  The slack faced look from after the stroke was almost all gone.  Sometimes my face looked almost even in the mirror, almost.   But now total tight, tension jaw has replaced the oozing puddle face look.  The face looks and feels like it is made of steel.  I can hardly open my mouth at all and each day the jaw muscles seem to tighten a bit more.  It is not good.  I know.  The swallow might be improving slowly, but now I can’t get the food in and even chew it properly.  I don’t understand.  I told Carole about this and she modified my exercises.  I told Kelly in PT.  She stopped the core workouts, talked to Carole and now the focus on all my sessions is back on the face.  I don’t even want to eat.  I was getting better with the ball exercises.  I felt a bit more stable today when I took Lola for her walkies.  But they say I have to double up on all the massage and other things that will loosen the jaw so I can chew.  They don’t know why the muscles are tightening so much.  They don’t have any words on why this is happening now.  Strokes seem to have a range of very unpredictable conditions.  And I don’t see that they have any other patients like me to compare too. So, my therapy champions do what they do best. They don’t focus on the questions that have no answers.  They focus on me and finding a solution to the problem.  I stop asking about the jaw. They stop talking so much and work with me and each other to get the jaw to loosen.  That is our focus.

At home, I try to use the same model.  I got a letter from the insurance company today.  They are not authorizing payment for any additional PT.  The letter says that I have exceeded the 20 PT visit limit.  But I check my book and I have only had 6 visits.  So I try to tackle the problem and call the telephone number on the letter. I note the time of my call on the letter to keep track. It is 4pm.  The muzak they play while I am on hold is the same as when I called my doctor’s office yesterday.  When I get a representative on the line, I tell them the authorization number on the letter.  They were wrong.  I haven’t exceeded the 20 visits in PT.  What a relief. I can keep working with Kelly.

They put me on hold again to figure out what the letter was about.  As I listen to the muzak again, I am proud of myself for thinking of a solution and making this phone call.  So many people who have strokes can’t do this.  But I have my wits about me, as my Gramma Harriet would say. And I am not at work.  Getting better is my full time job. So is will patiently wait on hold and see what’s up.

What’s up is not good.  The letter was about Speech.  They are cutting off my visits with Carole.  “Our records indicate that your benefit limit of 20 visits has been exhausted for this calendar year.” They read me the dates of my visits.  I “have the right to file a grievance if you do not agree with this decision.  Normally, a grievance is heard within 30 days of receipt of a request.”  They will send me a letter with the proper wording. I can’t believe what I am hearing.  The lady is so calm while I am so terrified.  I tell her that I don’t think this is right.  I don’t think they can do this to me.  I just had a stroke. What will I do without the therapy?  I ask her to note the problem for her superiors.  While I am waiting for this to occur, I am disconnected. (In more ways than one I guess)

What am I going to do? I blubber a bit, take a breath and  call my beloved Primary Care Doc.  I love that she takes my call right away.  She tells me that she will find out about an extension and take care of what needs to be done for that.  She tells me to keep showing up to the appointments and begin the grievance process.  That is the procedure. I breathe a bit better.  She cares about me. And there is always bureaucracy in any system.  It will work out, but I have to do all this work to get it done.  Fortunately I am able to do the work.  But I am tired.  I was getting better and now this.  Why can’t I just be fixed?

That is a bad line of thinking, I know. There is still time before the end of the day to call Carole.  I stop whining and blubbering and call Carole. Her voice helps.  She tells me that she will have a note ready tomorrow to go into the grievance.  I pick up the note, add the information to the form and file my first grievance.  I try not to worry.  But I read her note.  This is serious.  This is not good. I need the Speech Therapy.  I could die.

It’s all in black and white, “abnormal swallow, increased risk of aspiration, increased chance of hospitalization and possible recurrent stroke.”  All this because I am over a 20 visit limit, an arbitrary number they picked, that means the world to me. I survived the stroke, they took my PEG tube out, and now they could risk all that with refusing to pay for the speech. Why did they save me to begin with?  Why did they cover a million bucks to get my swallow back this much?  Why do all that to get me this far and then cut me off now? How can you make me go through all this and not finish the job?  It would have been much more cost effective to let me go earlier.  I know I am over the edge right now.  I know I am on a rant.  It will not help anything to act all cuckoo.  I know that.  But it’s like I don’t exist anymore, to anyone other than my Doc and Carole.

I try to be good at home about the new exercises. I put the big exercise ball away so I tempted. I think about the new clothes I could go shopping for since I am not putting the weight back on.  I try to make some different kinds of apple sauce.  I am trying to call and make plans to see college sister friend now that she is back from vacation.   I try to focus all my energy onto my jaw and my swallow.  I try not to wonder what is going on inside me.  Why don’t the doctors know what’s wrong?  If the experts don’t know what to do, it can’t be good.  I was getting better.  I swallowed. Why can’t I just keep getting better?  I try not to worry that the bad turn with the jaw means that my whole body is taking a bad turn.  I try not to worry. I try not to worry about the insurance mess.  I try not to worry about bills.  I try not to be scared of setbacks.   But I am starting not to care.

 

 

May 29^th 2016

The end of May is here.  The month has flown. As May is Stroke Awareness Month, I have tried to pack every day with morsels and tidbits of blue tinted awareness for Stroke to really make a big positive impact about this very-close-to-my-heart (and brain)-issue.  I have accumulated many FAST, blue ways to honor the message of Stroke Awareness throughout the years.  The hunt is always on, and the brain is always plotting new ways to spread the word.  This infographic from the NSA sums up the reason for my obsessive persistence. 

When the month hits, I open with decorating myself and my home in Blue.  This year the Blue level increased! YES!  We have a Central MA Heart Walk team and raise money with our red wagon.  Our team suited up and showed up for a cold, New England spring day walk in new, original design T- shirts!  YES!  The red wagon ran all over school and collected over seven hundred dollars!  YES!

Another annual Stroke Month event is Stroke Lobby Day on Beacon Hill.  I love it that this day to advocate for our state government to adopt and fund for Stroke, happens each May.  It’s like they know it is the month to get the momentum going for my issue: Stroke!   I have been able to suit up and show up to Beacon Hill for many years now. I save a personal day from school and go to Boston.  Some years I fly solo and meet up with my friends from the AHA/ASA at the State House.  Some years Tim comes.  One year, we car pooled and brought another survivor from a neighboring town with us.  This year Tim and Jason are coming with me.  YES!

Each year there are different bills involving stroke being considered.  My job, my privilege is to meet with MY Representative and MY Senator.  I tell them my story as one of their constituents.  I have the easiest job.  I have voted for both of this people.  They are great advocates for Stroke.  They are consistently helping people like me.  I am proud to speak to them and they treat me with such respect.  This is a side to politics that I am previously unfamiliar with.  It is not often that the folks I vote for, get elected and make a real positive difference in my life.  The issues that I care about are not always the ones that get voted the “Right” way, as I see it!  But MY Senator and My Representative make me proud of our democracy.

I have met with the elected officials or their aides.  If the Representative is the Worcester office, or the Senator is in session, then we meet with their aides.  At the advocate’s orientation each year, the importance of the aides is emphasized.  These are the “go to” folks who are “in the know.”  They will carry the message and make sure it is heard, if we do our job well.  To ensure that the message is well received, I add extra insurance.  I do what Gramma Harriet taught me: say “please” and “thank you” with sugar.  Yes, I bake for Beacon Hill.  And there is a method to my madness in May baking choices.

The tag line for The Henry Sugarhouse, baking business is “Seasonal Sweetness.”  In my very unprofessional, but yummy baking, I follow the seasons for inspiration and ingredients.  In summer, strawberries and blueberries and zukes are plentiful, so they are the source of many yummies.  Apples and Pumpkins in are honored in fall, followed by cranberries and dark chocolate in winter.  (Isn’t chocolate really in season all year? I think YES!) Spring demands light flavors and citrus.  I love pairing lime and blueberries for a flavorful tang after the hearty, earthy tones of winter.

And so for the Hill, I make a Lime Blueberry Bread.  It is a new recipe,

Ingredients

• 6 tablespoons (3/4 stick) butter, softened
• 1 cup sugar
• 2 eggs
• ½ cup milk
• 1½ cups flour
• 1 teaspoon baking powder
• ½ teaspoon salt
• grated zest of 1 lime
• 1 cup fresh blueberries
• juice of 1 lime
• ½ cup sugar

Instructions

1. Preheat the oven to 350F and grease 2 mini loaf pans.
2. In a large bowl, cream the butter and 1 cup sugar in a bowl until light and fluffy.
3. Beat in the eggs. Add the milk and mix well.
4. Add the flour mixture and beat until smooth.
5. Stir in lime zest and blueberries.
6. Pour the batter into the prepared pan and bake for 30 minutes or until a tester comes out clean
7. For the glaze: Mix the lime juice and ½ cup sugar in a bowl until the sugar dissolves. 20 seconds in the microwave and stirring helps. Drizzle over the bread after removing from the pan.

so I make extra and we try it out.

It does not disappoint the tasters and we take it to Boston.  This combination of flavors is a favorite of my AHA Guru, and that gives me a second big reason to bring this.  Now blueberries are anti-oxidants and lime has vitamin C, so basically this is a vitamin that I am bringing for Stroke Lobby Day.  It’s a healthy choice! Right?

But I am not flying solo this year.  So the baking choices are not mine alone.  Jason has an idea for a SECOND treat.  He wants to bring a truly sweet offering.

http://www.rachelcooks.com/2014/07/14/fruity-pebbles-no-bake-bars/

I temper the magnitude of his sugary choice a bit.  Instead of fruity pebbles, I pick Trader Joe’s fruit rings cereal.  Big difference, right?  Jason gets fruity mini marshmallows and I am sure the organic butter makes it healthy. YES?  He patiently stirs the butter and marshmallows while they melt.  He patiently mixes it into the cereal and then I try to patiently shmear the goopy stickiness into a pan to firm up.  I shmear, but not with the patience Jason had.  We let it firm up and cut it into squares for the trip.  Of course we sample the treat; surprisingly yummy.  The Red Goodie Basket is loaded up. (And there are plenty secured at home for us to eat later.)  Sure enough, the treats come in handy as a great attention grabbing-eye contact assuring part of our visits with our legislators.  These folks are busy and they meet a lot of people.  I cannot imagine that they meet a better looking child than we brought them, but still.  After we have said what we could say and explained the bills, we offer the goodies.  And that is when the magic begins.  The smiles are real because of the treats we bring, lovingly shared.  They stick to the ribs and keep our cause in the heart of the State House, for sure. When we leave the Hill, I have leftover lime bread. But Jason’s marshmallow treats are all gone!

But we are there for more than spreading joy through great baked goods. We are there to advocate for important bills.  I am there to put a face of Stroke on this issue.  So I have to know the bills and be able to speak about them when I meet with the legislators.  And this year is hard for me.  This year is not called Stroke Advocacy Day on the Hill.  I am not wearing blue.  It is called Heart on the Hill and we are all wearing red.

Every year the contingent that descends for Lobby Day is small, but persistent.  Our members are mostly caregivers, folks who devote their lives to make the survivor’s life better, possible even.  And then there are a handful of stroke survivors.  And I hear the same unspoken message, loudly.  Most stroke survivors are not like me.  They are not able to be here today and speak.  Their disabilities are too great to afford a physical day, hiking Beacon Hill inside and out. Stroke is brutal.  And I am blessed.

There has been a bill that I think would help a lot of people.  It is a coordinated system of care act.  I understand that it would do this:  if somebody calls 911 about a stroke, based on location and information given, the person would be sent to the nearest and best hospital for them.  I mean, Time is Brain for someone having a stroke.  This direction makes super sense to me.  But the act is stuck.  For some reason, it is not up for vote this year.

The bills that are on the table are important. There are 3 bills.

One bill says that healthy food and drinks have to be an option in vending machines on state property.  What a no brainer.  It wouldn’t take away the salt and sugar.  It would ADD healthy choices.  I know it would not be everyone’s choice, every time.  But the odds are good that if it were at least in the machine, it could be the choice.

Another bill wants to make sure that healthy food is available in underserved communities.  Worcester is a leader on this front.  Our mobile farmer’s markets are a model to the nation for bringing the farm to the urban table.  But there are other aspects I learned about.  In cities, there are neighborhoods without a supermarket in easy walking distance. With this bill, the neighborhood bodega could get funded for a big fridge, which they don’t currently have, from which they could sell fresh fruits and veggies, which the neighborhood needs and wants. Awesome.

And the third bill is Jason’s favorite.  It would increase accountability of schools to report the physical education they give our children. In my opinion, all students should have physical education every single day of grades K through 12, along with reading and math.  Great academic performance depends on a healthy body and brain.  We need to move every day!  Jason agrees.  Last year, he wouldn’t come to Stroke Lobby Day because it fell on gym day at school and he wouldn’t miss that class.  His school performs at the number one level in our state. And they have gym for all, weekly and 2 (that’s right) two recesses outdoors, every single day.  They choose to do it and the test results show it was the right choice, if you need to go by scores.  But not every child has this opportunity. This bill shows us how important our kid’s health is.

Every other year, I am drawn to the Statehouse to make sure that Stroke Survivors like me, get the care and support they need to have the best life possible.  I speak for those who have had a Stroke and aren’t as lucky as I am. People up there need see my face and hear the stories of so many who didn’t fare well enough to tell their own story of stroke.  People up there need to sit with me and see what getting help FAST saves.  The costs are too high in human life and medical bills to ignore Stroke.  I am humbled by the pleas I make each year.  I am saddened by how few survivors, like me, I see in the Statehouse. I am driven by need to advocate that runs deep into every cell of my being.  We have rights and we will be heard.

But this year we wear red. (You are right if you think I got Tim and Jason matching red polo shirts and me, a top that coordinates, in red.  Never miss a chance to show off my family and make my AHA Guru proud.) This year is about a group bigger than mine, bigger than stroke survivors.  It is about better health for my family, and yours. This year we are lobbying as Heart on the Hill. So for this Lobby Day, I am here for the 80% of Strokes that can be prevented, the ones that never have to happen.  I am here for all the damage that never has to be done.   Healthy diet and active lifestyle are the keys for preventing strokes in the first place.  We know that.  Let’s do it.

We park in the garage under the Boston Common.  We get to walk up Beacon Street to that golden domed building.  It is so impressive.  Behind us you can see the skyline of the city, our capital.  It is incredible to be here and be more than just sightseers.  I brought the family I got, after my Stroke. I am so grateful that Jason wanted to come.  What a gift. I told him, while we were baking that we were going to our capital to make things better. We would go there and tell the people who make the laws, what the good laws to have were and what to spend the money on.  I told Jason that it was our money and we had a right to tell them what to spend it on.  He liked that idea.

He was the only kid in the crowd on a day where one of the bills was all about kids’ gym classes and physical health.  Jason was meant to be there. We baked together. And we drove together. We wore red and rooted for a new idea of common core curriculum, that includes physical education.

I saw one other survivor, like me, from last year. I need to see him and know that someone else knows what I go through.  We are both here again, doing the footwork.  Talk about footwork,  he runs the Boston Marathon some years, even with some daunting (to me) physical disabilities.  I am inspired by his Grit and so grateful to be with him again this year.  His story needs to be heard every year.

This year had an added, unexpected bonus.  I got to see how this place, and this day, and this issue impacted my son.  I got to share this with him.  We were sitting for our advocacy orientation. Jason, Tim and I were in the front row as several Representatives and Senators spoke about our Heart Bills.  The Speaker of the House addressed us and I wondered what Jason was making of all this talk and pomp and circumstance.

One of the speakers in the Nurse’s Hall,  said “thank you for coming and spending the day in your Statehouse.” Jason heard that line too.  He sat up straighter and prouder in his chair, and winked at me.  My son now sees the Statehouse as a place he belongs in and has a right to be in. He knows he matters. He is important. What a gift! Hopefully next year we will get to suit up, show up and speak up at OUR Statehouse.

May and Stroke Awareness Month is ending for 2016.  I think we have done it proud.  I feel good about our contributions towards ending Stroke.  I have hope today. But May cannot end without one last, very important event.  I need to appreciate an essential figure in my recovery. I must celebrate the birthday of my purrfect caregiver.  Ciro turns 15 at the end of May.  I am not sure which day he was born on exactly.  He was 11 weeks old when I found him.  Or he was found for me. Second Chance Animal Shelter had not yet built their shelter.  But they were already saving lives.  They had foster care homes set up around the area.  In a very well-appointed 2-car garage, I met Ciro.  The garage doors were open and I saw many cages inside.  I headed for a far corner with a lone cage.  Hanging on the door of his cage, mewing sadly was the “Cat formerly known as Prince”.  I had seen him online and had to meet him.  Something in his green eyes called to me.  He and two siblings had been saved from a fire.  The siblings had been adopted early in the summer.  But “Prince” remained. He was shy and scared and hadn’t been socialized much. Life had been rough on him so far and he wasn’t sure there was much more in life.  In the moment I saw him, I knew he was purrfect for me.  I knew his life could be happy, somehow I knew.  And he knew something too, cats always do.  As a proud new momma, I knew His birthday would have to be celebrated, so I counted back 11 weeks. The last weekend in May, became his birthday. One day would not be enough to celebrate my green-eyed boy.

So, I rescued him that very day.  And he has returned the favor a million times over.  He has been witness to my darkest days.  He was with me for every single one of them.  And there were too many hopeless, desperate days when I wanted to die and didn’t.  I can’t have been a very fun momma to live with then. But, he was always by me, giving me all the love and comfort he had. He never gave up on me. And somehow we survived, together. Dark days have given way to a much happier life.  Every day, I am grateful that Ciro is with me.  He, above all others, knows my story.  He has shared my journey.  I try to give him the best I can.

Yes, I spoil him rotten on purpose. His favorite treat is butter.  His love of butter has earned him the name “butter licker.”  God help you, if you make toast for yourself and don’t leave a shmear of butter for Ciro on his table.  We learned that the hard way.  Fortunately for him, in our foodie, baking house, he gets spoiled with butter every single day of his life. He deserves it.  Life was hard for him before me and even harder for a while, with me.  My success had better be his success, he earned it.

I am so grateful to have shared 15 years with you, Ciro.  No amount of treats will ever be enough to tell you how much I love you. On your birthday, you can lick the butter wrapper to your hearts content. It has a couple of Tablespoons of butter in it and I put it on your table.  But in your passion, you knocked it to the floor and snout-pushed it over to me.  I will happily hold the wrapper still for you.  Have at it Ciro!  Happy Birthday!

 

 

 

 

 

 

 

 

Ciro’s birthday

 

 

 

Stroke Awareness Month Tawpic of the Day:

Touchy subject.

Controversial topic.

What does the word “life” mean to me? What matters to me in my “life?”  Do I have a “comfort zone?”  If I do, do I get stuck in that zone and not stretch myself?  Where do I stand on the subject of “change?”  A friend of ours often says, “If I am unwilling to change the little things, I will be unable to change the big things? At our coffee date this week, this was the tawpic Tim and I discussed.

Over his black coffee, Tim talked about being used to change.  Change came easy(er) to him. He grew up knowing that change was a fact of life.  As a child, conditions changed a lot and Tim somehow intuitively knew that he was powerless over the changes adults made in his life.   As an adult, he had moved a lot from neighborhood to neighborhood, city to town and coast to coast. He constantly changed how he looked and how he acted to try to fit into the new locations.  Life events led Tim to  a new spiritual way of life versus his previous ways.  He chose to adapt to change, roll with change, survive the change and choose to make changes.  This fluid view of a changing life, makes for a man much more comfortable in his own skin.  Tim said that his “comfort zone,” is the result of the changes.  It is a place where he finds “comfort” and is comfortable,  so different from what I believed.  I thought my understanding was how everyone interpreted the phrase. What a gift to talk like this and be able to learn so much.

I, on the other hand, define “comfort zone” differently. I am comfortable spending my day with twenty plus students in my class and hundreds more in the school.  The noise of school is comforting to me.  Speaking in front of 20 or 200 students is fine with me.  And I have extended that comfort to speaking in front of large groups of unknown adults too.  I take comfort in my 20 years of  experience.  I have a handle on the needs of my students and the curriculum they are expected to master.  I have a tool box of methods that work well for me. In this sense, my comfort zone is similar to a strong foundation.  I can build on it. The first school I was at, was my home for 18 years. It certainly was a comfort zone, but also gave me a foundation to stand on when I chose to leave.

This was made so obvious when I left that school and moved to my present school.  It was so strange and foreign and anxiety provoking.  Just the ride to school, for example, was way out of my comfort zone.  I knew every tree, house and business on the 6 minute drive to my old school.  The trees in front of my old high school were hundreds of years old.  There was a beech and maples and an oak.   The leaves turned gold, yellow and brown in the fall.  Branches fell due to savage ice storms in the winter.  Each spring the maple had greenness first.  I knew the road with my eyes closed.

It only takes 4 minutes to get to my school now.  But the roads head west, not east.  There are three ways I can easily go to work.  I varied at first, but now stick to one route with a coffee shop break at minute 3 of the drive. There are a couple of houses that I watch throughout the seasons.  I am watching one stand of trees change in particular. I have “my parking spot” at school which I can get if I get there by 7:05am.  But the car is not on auto pilot for the commute yet, after almost 2 years.  In my always very brief commute, I think about the day to come or breathe deep and think about the transition home.  I try to use the “me” time well. A lot happens inside my head during this short drive.  I don’t really focus on the scenery outside the car.   I had no idea how the road became a part of MY journey even when I wasn’t really paying attention to it.  Curious.

That is a professional comfort zone.  In my personal life, I can get settled and find comfort in so many ways, now.  The walk around the block that I take Gus on is tried and true.  I rarely deviate.  My apple pie recipe, crocheting a granny square afghan, driving to Wessyfoo, Sunday breakfast of bacon and eggs, my remote control, and decorating my house for any holiday is in my comfort zone.  In fact, these activities become a meditation of sorts.  I can feel my body relax and my mind slow down.  I find peace in “the doing” of many of these previously admitted items in my comfort zone. In that way, the comfort zone is a blessing.  Peace is certainly a desirable state for me.

There have been many times in my life when I lived in the “comfort zone” out of fear. I feared failure. I feared the unknown.  I feared change.  I feared myself.   I hid in the comfort zone, “the known” and called it “rooted in tradition.”  Bull.  It was “root-bound” in the safety of the past.  Before, during and for a long while after my stroke, this was my home.  I lacked faith to venture out.  I didn’t believe that there might be, could be, or was a path which had a firm foundation AND led towards a future filled with hope.

I do believe that now. So I do have a comfort zone, but is not super-stayed-and-stagnant.  Since I made peace with my stroke and accepted change as a fact of life, I change an awful lot, often.  For me, living life on life’s terms, works best  when I rely on and celebrate the traditions of my roots. The wonderful actions of my family before me and things they collected, I cherish.  When I honor the great treasures of my family or community I feel solid and strong.  Then I use that strength to take a leap of faith and try something new.  I am constantly amazed at the places, people, 4 leggeds and skills in the world.  And I am bowled over by the fact that when I tip-toe out of my comfort zone, I try and often succeed.  The world shows me great beauty and kindness, which I never knew was there.  Now it is not always a safe path that I choose or find myself on.  Life happens.  People I care so much for choose a path that leads them away from me or they pass away. I have to let them go.  Places I love close and I am scared there will never be another one as good.  A special mug slips out of my hands early one morning and shatters to bits on the tile kitchen floor. An ancient tree that I believed to be immortal, dies. Something is stolen and I feel vulnerable. Sometimes the challenges and pain and heart ache are mammoth.  I have to be open to good and bad passing in and out of my life. And I can’t do this alone.  I need help.  The spirits of those around me and hope within me sustain me for today. That is all I ask for.  That is all I need.

May 25^th 2003

Coumadin dose is 12.5 mg.  I take it and I try to imagine that the artery in the back of my neck is healing.  Healing, they tell me, means that it is opening up wider, back to the original state.  So I try imagining the artery back there, opening wider and wider and getting stronger.   Next month they are going to do another MRI and check the progress.  I hope it is getting better.

I really didn’t want to get out of bed today.  My whole right side and especially the arm is so cold.  The weather is getting warmer every day.  But my side is getting colder.  Ick.  By the time morning comes, after the night under the covers, the pain lessens a bit.  Getting out of bed today seems like just asking for more cold and lots of trouble.   And I have no energy and lots of anxiety.  But Nurse Lola demanded that I get out of bed, face the day and FEED her. So I did.

The truth is that, today is scary. Today is the day.  Today they are going to take my PEG tube out, whether I like it or not.  I don’t need the suction.  I don’t use the Kangaroo.  My swallow is improving, though there is still pooling of food going on. So Carole scheduled the removal of my PEG tube.  I told her it was too soon.  I told her I didn’t think the swallow was stronger.  Maybe it was even weakening.  I asked what would happen if my swallow disappeared again when I was home alone and they had already taken the tube out?  I showed her how well I had taped the tube to my tummy now.  The tube was no bother to me.  Why do they have to take it out now?  What will happen when the next stroke comes if I don’t have my tube?  She said that my swallow was stable.  I said, “Please, not yet.”  She said, “It’s time.”

I had tried to buy some time.  It didn’t work.  The wheels were in motion.  I was to show up at 930am for same day surgery.  It was a simple surgery, they said.  Everyone in my family was so excited for me.  I was getting so much better, in their eyes.  They seemed happy for me.  Every one of my friends and all the nurses and staff at my hospital thought that this surgery was great news.  I tried to believe that they believed it was a good thing and that I was ready.  I mean, they knew me here at the hospital and when something happened, they would be right there.  And it would be good to be able to wear more of my regular clothes and not worry about ripping the tube out or feeling it tug and pull with zippers and waistbands and such.  Being able to wear whatever normal clothes I wanted would be a good thing.  And I still had the suction at home, in case.  OK.  I will go through with it.  The nurses check me in and tell me how awesome it is that I am doing so great and getting rid of the tube.  They tell me that they haven’t seen someone get the tube removed so fast.  They said it was so great that my swallow had recovered.  And in that moment, I believed them.  I had a big stroke and totally lost my swallow.  And yet, here I was, standing and swallowing.   This surgery was a good thing.  I had improved.  I smiled a pretty real smile for a moment.

They were going to have to remove the tube bits that were on my insides through my mouth.  OK, I say.   They had to take them out endoscopically because of high dose of Coumadin that I am on.  OK, I say again.  In my head I realize that I am not doing that great if I am still on a high dose of this powerful blood thinner.  If I need a high dose for this long, things are kind of bad.  I might be “stable,” but it doesn’t sound like I am getting better.  I realize that they are going to pretty much knock me out, to go through my mouth. NOT OK.  What if they mess up my swallow during the surgery?  I can’t lie back so flat like they want right now.  What if I can’t breathe or swallow or the artery is hurt again?  NOT OK, I scream inside my head.  Once they give me the dopey drugs, all protests stop.  They better be right about this surgery.  The next minute I am waking up and the doctor is saying that I did great and everything went great.  Dopey or not, I try a swallow and it works.  So far so good.  Definitely dopey, I ask him to move the mirror so I can look at the place where the PEG tube was.  Doctor swivels the mirror and me so I can see a bandaged belly with nothing else sticking out.  It looks so bizarre to me, so flat.  Still dopey, I ask him where MY tube is.  He smiles and raises his eyebrows.  I guess I looked serious.  So he showed me my tube.  It had just been cut off and what was in his hand was the bit I knew well.  There it was.  That was mine and it was no longer attached.   The next words were not mine, although they came out my mouth.  “This is a big deal.  You are amazing.  Can I have my tube to take home?  Will you autograph it?”  He stopped.  The nurses stopped.  They laughed out loud, a real good belly laugh.  I don’t think this is the usual conversation that they have with their patients.  And then I realize that I am not an ordinary patient.  “Please.  I had a stroke and I want the tube as a momento.”  The Doctor agrees.  One nurse wraps some hospital tape around the tube.  The Doctor takes the tube and a pen and signs.  The nurse puts the tube in a big hospital Ziploc type bag and hands it to me.  I love it.  Totally cool take away from this event.  And I really am grateful that the Doctor did such a good job.

My home directions tell me that I might get a sore throat and not to get worried.  It says I can eat and drink normally, for me.  I might have one of my leftover cans of formula. Easy. The paper says to keep taking all my medications and the Doctor also says that I definitely should take my Coumadin. The discharge instructions also say that I will be silly-headed for a day, and so I should rest. Mom will drive me home and then I can just rest and take care of the babies. The paper says that I should not sign any legal documents or make big decisions until tomorrow.  That is OK by me.  I made my big decisions already today.  I decided to show up for the surgery.  And I got my tube back, autographed by the man himself.  I am surprised by the last thing on the paper.  It catches me off guard and sticks hard in my still dopey mind. I get really angry inside because I don’t understand the words.  What do they mean? How can I possibly do that?  What was the Doctor thinking to write that to me? Who am I now? What is my life now? Why did I have to have a stroke?  Is this all there is?  In the “Special Instructions,” is a handwritten note from the Doctor, only 4 little words.   “Have a good life.”

 

May 27^th 2016

*I have saved my baggie with autographed tube for 13 years.  It was always in my big, black binder.  It was always there.  It is not there now.  Where is it? And now that I am writing about it, I am desperate to find it. I have been ransacking the house for weeks.  No tube.  So now, I am asking for help.  Some pray to St. Anthony, the patron saint of lost items.  My Buddhist Reiki Master, had her own twist on this.  She called out to “Tony!!!!!!!”  This personal approach appealed to me.  So today I ask Tony to lead me to my tube.  If you could ask too, that would be great.

 

On the professional front, this teacher became the student today.  I learned a lesson the hard way.  On a hot day, with temperatures rising well into the 80’s, in a classroom on the top floor with sun blazing in and a mere 12 days of school left, I stepped out of my comfort zone, totally inadvertently. It was one of those accidental, unplanned events. I didn’t do it on purpose.  I didn’t think about doing it.  I didn’t mean for it to happen. But it happened anyway. (Life is good.)

I think it was heat induced.  I really don’t do well with the heat and humidity.  It’s a stroke thing, one post stroke condition I have, that doesn’t seem to be going away this year.  Some of my stroke things come and go or change their degree over time.  I still can’t regulate my body heat.  I am still kind of robotic with that condition.  My body takes a long time to adapt to sudden temperature change and doesn’t like extreme temperature much at all.  I try to ignore the conditions and be “normal.”  I look normal even when the hot temperatures have me in their grips.  Inside, I am boiling hot as if I was in a sauna. But I am not red faced or sweating.  Inside, I am exhausted as if I just ran a marathon.  My muscles move slowly, I feel heavy, my arms and legs ache, and I can’t catch a full breath.  But all you see, is my shoulders heaving a bit in effort. Light hurts my eyes and noise hurts my ears.  But I just sit quietly in the back of the room and focus totally on the task at hand.  I look like I am “busy.”

So, today is one of those days that I realize “I am just not that powerful.”  Today I am reminded that I am a stroke survivor and things work a little differently inside me.  I see and hear and feel what’s going on with me, as hard as I try to ignore.

The heat got to me today.  We turned the lights off and turned both fans on high.  I sat at my desk and entered the math grades into the computer while the kid’s transitioned to reading.  G2, in her t-shirt that says “I don’t need Google, I’m GREEK. We know everything,” had things well in hand setting up for the next subject. I don’t sit much at my desk. But today, I thought I was leading by example.  I appeared calm on a hot day.  And I was keeping an eye on a student seated at the table next to my desk.  He was diligently working on the computer, trying to contain all the adolescent energy building inside him.  I looked like I was doing great.  But my kid’s and G2 are smarter than I am and they knew better.  That’s right. They knew the truth about me before I did.  Their teacher was goofy-brained and light headed from the heat.

Two students, seated at a couple of the college style desk/chair combos directly in front of my desk,  were starting to bicker and getting on each other’s last, hot nerve.  I had tried the usual, “Please stop talking.”  I had tried to have them turn their chairs away from each other.  I had tried to ignore.  Their classmates tried too. “STOP TALKING,” and “do your work,” was repeated several times by many different members of our class.

My next words came out my mouth when I thought they were still inside my head.  “What does “Chillax” mean?”  I said it out loud.  I knew that in my head I was saying the word to the bickering boys.  I guess I did more than just think the word.  The student working on his computer next to me, heard me and answered. He knew what it meant. “It means chill out and relax,” he said without looking up from the screen.  He was confident and precise in his answer.  And all the kids in class agreed.  They had all heard my question, were laughing at my ignorance of basic modern language and agreed that the answer given to me was correct. “How could I not know that word?  Do you know what LOL means? What about AKA Miss?”  They sounded their questions rapidly and laughed more when I answered LOL correct but drew a blank on AKA.  I looked around my room and took a few breaths. The smiles I saw were genuine and kind.  They were not laughing at me as if I were stupid.  They were playing with me, in the best sense of the world.  They felt good that they knew something I didn’t. They loved that I had asked the question for a change, without already know the answer.  And they were proud that they had been able to teach me something.

“Chill out and relax” combine to make the new word/command, chillax.   I had used this word, I hope appropriately. “Chillax” actually means something specific.  It is not just slang.  It is a contraction without the apostrophe.   I had tried to figure out what it meant.  I got as far as the “chill” part.  I get that chill means to calm down.  And with the “ax” part, I understood that as the way some kids read the word “ask.”  I tried to combine the two and it didn’t make sense to me inside my head. But I never asked anyone what it meant.  I certainly didn’t ask the experts, my sixth grade students.

But today, in our hot and bothered classroom, I tried something new.  I got outside my comfort zone.  I asked a question out loud, that I wanted the answer to for a long time but been afraid to admit that I didn’t have the answer.  Asking for help, asking that question left me very vulnerable.  I hate being vulnerable.  I don’t know why I don’t seek help from more people more often.  I surround myself with smart people, why not connect with them? Why do I assume that people will scorn me for my ignorance? Why do I think it is ignorance to not know everything?  I picture people surrounding me like hyenas and laughing at me when I reveal a weakness, and then going in for the kill.   It is such an aggressive image for such a simple situation.  Why do I limit my life and my knowledge of the world, out of insane fear?

I didn’t do that today.  And I can’t take responsibility for that action.  Before my stroke, I can’t remember taking even a small risk like that.  I did it sometimes with people I felt close too.  And on the very rare occasion that their reaction even hinted at a less than loving response, or if I imagined a hostile one, I vehemently and irrevocably banned that person from my queen-dom, forever. Well I didn’t actually cease all communication with most of them. I just never again was vulnerable, admitting a deficit or weakness to them.  I built a very tall, solid wall around myself.  I was isolated and got hurt less.  But I was also lonely and hopeless.

My stroke is a great teacher, but only since I accepted a right sized place in the world. I don’t have all the answers.  No one has all the answers. The answers aren’t always important, but the people in my life are. I can accept help, once the pain is great enough for this stubborn a** to smarten up.  My stroke and the conditions I live with make me vulnerable in ways I never was before and ways that I often try to ignore now. Ignore this side of me long enough, and strange things happen.  A miracle occurs.  I open my mouth, like I did today and the world opens up.  My life and I, am changed for the better.

 

 

That lesson at work was followed by one at home.  This time the teachers are my yard, son, husband and Gus. This lesson is part of an ongoing unit that will last until fall, and beyond.  Every year, I plant some sort of garden.  I pick out what plants I would like to try. I decide where would be a good place in the yard for the various plants to grow.  I seek some input from the family on colors of flowers or types of herbs to grow. I ask Tim to help with the heavy work of soil preparation, and he always does.  I plant. I water, but not enough.  I weed, but not very diligently. And I reap the results of my method.

Mind you, my plan was not to echo a fascist regime in my gardening style.  I did the best I could with what I knew, with the stories I told myself.  I didn’t want to bother my family too much with the work of a garden that might not interest them.  I didn’t want to do too much in the yard and step on the toes of what my family envisioned for their yard.  I didn’t want to try any plants that I wasn’t really familiar with, because I didn’t know how to grow them.  This limited my choices to marigolds and cucumbers. I did try pumpkins last summer, but as I had no idea how much water and sun they need and our backyard resembled a war zone with insane amounts of work being done on the back of the house, I didn’t harvest a simple pumplet, let alone the Great Pumpkin I had imagined in my mind.

This method limited every aspect of my gardening experience. I gardened alone. I dreaded doing much work in the garden.  I didn’t end up spending much time in my garden.  And the results were not so impressive from my garden.  There was the year that we grew carrots.  I mean, we all pitched in with those plants and sure enough, we all ate a lot of totally yummy, albeit warty to look at, carrots.  There was the difference.  We did it together.

In the greyness of late winter this year, when I started dreaming of digging in brown soil and growing green “fings.”  I thought of our carrots.  I asked Tim if we should grow carrots again.  He said that sounded good.  A week went by and I headed outside and cut the raspberry bushes, hedges more like, back to get lots of new growth.  This time “the mens” came outside too.  They collected sticks that had fallen and raked the leaves up.  Sweaty and smiling, we all 3 stood and admired our yard.  A trip to Wessy and making the daily rounds with my aunt, made clear to me how much change happens every day in a garden. In spring, new life abounds. So I started making rounds with Gus everyday and was rewarded with daily miracles of hearty plants that came up another year and little buds in new spots from plants that had spread out to new places in the yard.  I felt a part of the yard and reported the findings, daily to the mens.  A week later, I saw a post on Facebook about things that you could build that would maximize vertical space in a garden. Our yard has pockets of good sun.  But they are isolated and need to be used wisely.  Planting UP might be the way.

I sent the post to Tim and he looked at it with Jason.  We all liked the Teepee idea.  It looked like Jason could actually hang out inside it, if you built it tall enough. He liked that idea.  I loved that the teepee was good for climbing veggies, like cucumbers that Gramma Harriet used to grow and I would pick and we would eat right out of the ground, together.

Peas are a family favorite to grow too.  Since I was a kid, the peas are planted by adults and harvested by kids when adults are inside the house doing adult things. No Scanlon/Henry peas ever make it inside to a cooking pot.  They are an outdoor treat for thems that have the initiative to go get ‘em.  And beans are climbers and some kind of squash too.

Tim and I Googled how to actually make a teepee.  We watched the video separately and together, over and over.  It seemed manageable to assemble and not expensive.  We talked over supper about using the pumpkin patch area, but rounding it out from a rectangle to an oval.  We talked about not replacing the butterfly bushes near the pumpkin patch.  They had done well one year and not so much since.  I was thinking of a wisteria.  It is a very elegant plant and reminds me of my Dad’s cottage in England.  Thank God I told my gardening neighbor about this thought.  He told me that wisteria take 8 years minimum,  to mature enough to flower. I shook my head right away and abandoned that idea.  I am nowhere near patient enough to wait that long.  Hmmm.  What to put where the butterfly bushes?

A few weeks, late on a Sunday afternoon, the three of us went to the lumber store right before it closed. We picked out 8 pieces of thinish, roundish molding and asked for it to be cut to 6 ½ foot lengths. We bought a roll of household cotton twine and headed home. Jason wanted the teepee built right then. Tim tried to build it quickly while I got supper together.  We didn’t go with version one.  We piled the wood up and put the twine in the shed.  The right day would come.

A week ago, Tim and Jason cleared the sod for the new bed.  Teamwork.  I fiddled and diddled with the teepee.  I stood my construction up and we all went around and slowly worked the pieces outward, making a mighty fine teepee.  The plants would come soon.  We went up the road last Saturday after Jason’s baseball game and bought some “fings” to plant:   4 packs of yellow marigolds, two tall and two small.   Marigolds are great in the boxes near the shed, bright and cheerful.  They would also work around the pole that we three had sunk in an abandoned butterfly bush hole.  For the pole, we bought a big, big clematis vine in deep purple.  I picked out a small one, but the chap at the farm said they had bigger, more mature ones for not much more. It would flower this year, for sure.   Sold.  Supremo Clematis went in that day. 

And to grow on our teepee, we got beans, peas, cukes and spaghetti squash.  Excellent.  Monday, when the mens were at baseball practice, I planted the lot.  Gus helped.  He wandered and sniffed and found the sunny spots on the dirt to roll in.  He didn’t help dig, which is insane because this beagle is quite an accomplished digger. I asked Gus how long he thought it would take the bunny to come for supper?  What percentage of the planting would become a bunny snack?  It is 5 days post planting and 100% of the plants remain.  That is unexpected.  Tim remarks on how good the pole with the clematis looks.  Mom loves the deep purple color we picked.  The vine and the marigolds all around, she can see from her bedroom window.  Gus and I check the plants every day. We grilled hot dogs this week, in the yard.  And Tim fixed the grill without blowing it up, as I imagined. We did homework on the deck and munched on chips and dip.  Jason helps me water and checks if the plants are grabbing onto the strings yet.  I look forward to this day in our garden and we all dream of the summer with these plants.

 

 

Stroke Awareness Month Tawpic for the day: 

I am happy in this world, now.  And my stroke was and is a powerful teacher. I have someone to love: me, Tim, Jason, my family and friends, students, 4 leggeds and God.  I am blessed by their love and it makes me happy to love. I have something to do: put ribs in the crock pot, build a teepee in the garden, give Ciro a midday nosh, go food shopping at Trader Joe’s, take Gus for a walk, make Lime Blueberry Bread, plan lessons for the week, watch The Golden Girls while folding laundry, clean cat barf, vacuum, stack left over lumber to give to a friend to build his chicken coop and fruity cereal marshmallow treats with Jason “just because.” I am blessed with the day’s work and I am happy being of service.  I have something to hope for: this day, the next, making my son smile, a hug from Tim, Ciro’s 15^th birthday next week, spreading the message of FAST, how good the ribs might be at supper, the banana split challenge I am doing next weekend, a good night’s sleep, seeing my students graduate on June 14^th,  the new recipes I want to try this week, planting the clematis that might grow better than the butterfly bushes, listening to Garrison and being inspired by his news, helping friends face troubles and walking through the day with them,  and enjoying a big, refreshing, bubbly gulp of a new seltzer flavor in a great mug, with no straw, this afternoon.

I am blessed with hope all around me and in me and I am happy when I share hope with others. This is certainly an all-inclusive, A+ recipe for a happy day.  I choose this for today.

 

 

 

May 21^st 2003

Coumadin is holding steady this week.  My daily dose is 12.5 mg.  It’s a pretty high dose, but right now it is fine with me because of how I can take the medicine. I can swallow my pills when I drink my water.  My Swallowing/Feeding Caregiver Instruction sheet says so.  Well I guess it does.  The sheet says that the caregiver can let me have “all liquids.”  I am my caregiver and I say,  I read the sheet and I can have “all liquids” and swallow my pills. I follow “Techniques required to improve the individual’s swallowing safety.”  The individual is me and I want to be safe.

For extra safety, and most important to me, I use a bendy straw, all the time, for all liquids.  Carole suggested them to me.  We always see the bendy straws at my hospital.  They make things so easy.  The tube gets the momentum of the liquid going and that helps the swallow.   The shape helps the most.  I don’t have to tip the glass up and bend my head back to take a drink.  I can’t bend my head back.  I know it will be bad for my artery.  I know I will stroke again.  I can’t do that.  Please let me be safe and keep swallowing today.  Please don’t let me aspirate and die or stroke out because I eat or drink the wrong thing.

So this morning I took my pills after I fed all three babies and took Lola out.  I followed the techniques, put the pills way back on my tongue.  Then I take a sip of water through my blue bendy straw.  Today I picked blue.  The bendy straws come in the primary colors.  Then I make one big swallow and shoot the pills down my throat with the water. Then I take 3 dry swallows after the sip of water.  It is a weird sensation to take a dry swallow and have it work. I check to make sure there is no “pocketing” or cheeking of the pills and that my mouth is clear.  I use my finger and check.  I did it.  “Down the Hatch,” is what Gramma Harriet said every morning after she washed down a handful of pills with her bird glass full of OJ.  Every day she said it.  So now I will do that, just with a straw.

I didn’t eat breakfast today.  Or yesterday.  I can’t eat bread or bread products, so I won’t have toast with jam.  I can’t have cereal with milk either as that is a combination food (solids in liquid.) But that is not why.  I really like being skinny.  I really, really like it.  And I don’t like much about me right now.  I enjoy drinking water or eating apple sauce. That feels good and tastes good and I am good at it now.   I’d love to eat a banana, but I can’t eat it with the Coumadin.  Bananas have loads of potassium and they are not on my diet right now.

I guess that I got out of the habit of eating. And now, I wouldn’t want to eat in front of anyone, except Carole anyway.  All the focus has to be on the eating. I have to do my take a bit or sip, then take 3 empty swallows, then take a drink after each mouthful of food and eat slowly.  I have to make sure I swallow everything before I put anything more in.  I have to make sure there is no pocketing of the food before I take more in.  It’s a lot of work.  I can’t focus on who I am with.  I can’t break break and I can’t be social.   How I eat is kind of freaky and anti-social and I am going to avoid it.

I can sit quietly with people.  I am not choking on my own spit anymore.  I don’t spit into tissues or use the suction.  I am not hooked up to the kangaroo and I don’t have to hydrate through the tube anymore.  In those ways, I am a lot more normal.  I can blend in.  I can hold a glass and have a few sips of a drink.  But I am not going to have everyone stare at the freak show as she feeds.  I don’t need that humiliation.  And I do need/like that when I see my friends or family, they can say that I am doing better.  They comment on, or I do, how much weight I lost.  After all this, I am not fat.  That is something to talk about. I just want to blend into the background and be a part of everyone else’s normal lives.  I just need a break from me right now.

Today and 4 times this week I have DPNS with Carole.  We still have much work to do.  Carole wants me to be able to eat breads and combination foods.  She wants to make sure the swallow is stable, the reflexes are strong and that I am truly healed and safe.  I believe her and I want to do the work.  I met with a dietician this week for a one-time thing.  She wanted to make sure I knew to eat three healthy meals every day.  I do know what they are and how to make them. I told her how much I love to cook and that I can drive so it should be a snap.  That is the truth.  I told her about what I can and cannot eat right now.  She read that in my file, smiled compassionately and made suggestions about the importance of good nutrition.  I know I should do it.  I know she wanted me to.  So I lied and told her I was doing it.

I get to start Physical Therapy this week.  Now that the swallow is improving, improving enough to schedule the surgery to take out the PEG tube for real next week, my Doctors want to add in working on my weakness, flexibility, strength and God knows what else.  My evaluation was good.  I was in my comfort zone, in the big room outside Carole’s office.  It was a good place to start.  We sat for a bit and I answered a bunch of questions while she took notes.  She got my starred particulars up front and on top of the paper, “vertebral artery precaution, don’t extend neck, don’t over rotate neck, basically don’t go near the neck, and PEG tube.  On the lines she wrote down that I had a stroke.  I had TMJ spasms and left side weakness.  She wrote down that I had coldness in my right side, but spasms and tightness on the left, with “gait deficits.” I had a car accident a few years ago and got extensive chiropractic following it.  My medications are duly noted.  The social history gets me: “lives alone with pets, no children.”  That is true. But what does it tell her?  Nothing good I guess.  She records that I am not having pain right now.  Totally true.  My body is on mute.  She has me walk around while she watches.  She has me squeeze the thing with my hand to measure strength.  She taps my elbows and bends my knees.  I flex my arms and try to squat without falling over.   She makes a lot of notes, including that I have glut weakness. Really?  I will have two appointments of PT this week and she will arrange them to coincide with my appointments with Carole and not make me do anything that will yank the PEG tube around.

In the end, we sit back down and she writes down my goal:  I want to “walk normal,” I say. I can’t believe that is what I said.  It sounds so weak to me. My goal?  In my head I am screaming about my goal.  My goal is to have my life back, to be normal, to wake up and find this was all a bad dream. But all I say is the thing about walking.  I am such a goober.  Why do I know what she wrote? I have gotten pretty good at reading the notes as they all write them, upside down.  I peek at my papers when they get up.  I read about myself when they move or look away. I pick them up and scan them when anyone leaves the room during an appointment.  I try to memorize what they write about me and say to me.  I don’t understand me anymore.  Maybe whatever they are writing will help me.  Please help me.

 

 

 

May 21^st, 2016

Well, it’s been a quiet week in Worcester, my hometown.  Garrison Keillor of Prairie Home Companion, a long running music/variety show on public radio, created a town. And every week he takes about 10 minutes during the program to tell you the news of Lake Wobegon.  He always begins like I did just now, except with the name of his town.  Since I was a little girl, I have loved that opening and that town.  Every Saturday night at 6pm in Wessy, we would tune in. https://www.bing.com/videos/search?q=garrison+keillor+news+from+lake+wobegon+feb+14&view=detail&mid=F8844070593A92FE2BC6F8844070593A92FE2BC6&FORM=VIRE

Garrison would open that way, and then go on with the zaniest tales of his townsfolk.  I really loved how the everyday workings of his community could be so funny and poignant.  I wanted to live there, to be a part of such a community: simple people doing extraordinary things.  At the end of the weekly installment, he would have the same closing line: “And that’s the news from Lake Wobegon; where all the women are strong, all the men are good looking and all the children are above average.”  I grew up as a child, hearing and wanting to believe him, into a woman and knowing that what he said was true.  (And I certainly do live with good looking mens.)

On September 9^th, 2009, Garrison had a minor stroke.   I remember when I heard the news.   I was in a place of recovery, seeing my stroke as a gift, not a punishment for sins committed.  Jason was almost 8 months old and thriving, keeping his parents in a constant state of exhaustion and loving every moment.  We had just bought our home and were settling in for the fall.  My much beloved life at this point was a direct result, I believe, of living with my stroke and seeing it as part of the plan for me.  I was living life on life’s terms by that point and wondered how Garrison would weave his stroke into his story.  Garrison speaks of his stroke here: http://www.npr.org/sections/thetwo-way/2009/09/garrison_keillor_explains_what.html

And so after the Heart Walk, Botox, Vet visits, baseball, student strife and Tae Kwon Do tournament, it was a quiet week in Worcester.  Well, quietish.  Monday was school and a staff meeting.  The kids haven’t really settled down, but I am handling it better. I am relying on G2 more and focusing on the kids who want to do something, joyfully for the final month of their elementary school.  Jason had baseball practice in the afternoon.  While Tim took him, I baked fresh muffins for breakus, put supper together and did some writing.  I love the quiet, for about 5 minutes and then I start listening/wishing for the mens to come home.  We went and hung out with some friends for a cup of coffee and a bit of crocheting after supper, always a good combination.  Tuesday was good work at school, for me.  I faced the day to the best of my ability.  I tried to leave work at work and focus on Jason’s two Tae Kwon Do classes in the afternoon.  But my heart hurt from the icky vibes of the day.  And I don’t like to hurt.  So I got a bit cranky instead.  That is not much better for me and certainly no good for the mens.  Wednesday and Thursday were good days for the park after school.  The fresh air and sunshine always helps.  It feeds me some hope for the next day.  And watching Jason and all the kids play, with so much passion and energy and joy, is a gift.  Maybe if I had played too, the exercise would have helped me sleep better than I did.  But the benefits for a bystander are minimal, and I had chosen to watch while they romped.

I got a bit of food shopping done before supper. But Thursday evening, I knew I was off the beam.  Hurt heart turned to crankiness and now was on its way to seething putridness concealed under a VERY thin veneer. I kept trying to restart my day, to let it go. But I wasn’t having much success.  After supper, I turned where I always turn for comfort, food.  Just over a year ago, a dear man and fellow teacher passed away suddenly.  He was a truly good gentle man, not much older than I.  Whenever times got tough at work and we needed bucking up, we would plan a lunch for our staff.  It always did the trick to turn tears into smiles.  We all felt better eating together and sharing yummy goodies.  I forget what I would bring, but he always made Ham Salad Sandwiches, with pickle and celery, on a soft roll.  I never ate ham salad ever, unless he made it.  And then it was the absolute ultimate comfort food.  I don’t know exactly what the ingredients were in the sandwiches, but I know he added a big ole dose of love and laughter.  I know it was in there, because we all had happy hearts and smiles after one of our lunches.

So, at the supermarket, when the deli lady asked if I wanted anything else, a voice not mine said “Yes.”  I came home with ham and celery and pickles and a plan to honor my friend and buck up myself with Ham Salad Sandwiches. After supper, I cleaned up the dinner dishes and then went out into the back yard and cleaned up Gus’s presents.  Thank you Gus!  The mens headed out to play catch and I headed back into the kitchen to mutter and make the Ham Salad.  There was a smell coming from the trash can and I had no patience. I didn’t wait for Tim to do it.  I didn’t ask him to come up and do it.  I did it all by myself. I pulled the trash bag up and out and brought it outside to the shed.  But back in the kitchen, it didn’t smell better.  It was worse.  And I saw bugs and as I looked into the trash can I saw post-apocalyptic toxic sludge and to top it all off, maggots. Flesh eating, corpse devouring little maggots were in my kitchen.  And I was alone.  I was alone with my stupid seething self-centered childish tantruming self. I did not call to the mens to take care of the trash trauma, so I could make ham salad.  Nope.  I muttered and swore.  Gus, Ciro and Rondo came to watch.  It was me versus the maggots. Not a fair fight as I was out for blood right then.  Only annihilation would make me feel better.  So I gagged three times and grabbed chemicals, paper towels and the trash can.  Out the back door I charged.  I banged the sludge out into a bag and sealed it and stowed it away, praying the bag wouldn’t explode without oxygen.  Or I prayed that it would explode, on somebody who was on my poop-list-du-jour.

The sound of the hose spraying the can, the odor and my cursing brought the mens around to my side of the house.  They took over the vile job.  I provided supervision through swearing.  When I was handed a spotless, sweet smelling trash can, I headed back upstairs to swear some more, light a candle and make ham salad.  I thought the mens would be right behind me.  I mean, I told them to head directly into the shower and “wash those maggots right out of your hair.”

But they had their own ideas. The mens insisted on finishing their round of catch. Bleech!  I went, speechless, upstairs where I changed my clothes and scrubbed up to the elbows. Mystified by my mens, I began chopping celery and pickles for the salad.  How could they let the trash get so bad?  How did I miss the ick?  How could they clean the can without a gas mask and minus the gagging I had for my brief part of the job?  How could they go right back to play, after the job was done?  Weren’t they full of the heebie-jeebies like I was?  They were nasty and gross to be able to carry on with their game, I thought as I mixed mayo and pickle juice.  I was up here, cooking and cleaning while the dirty ones freely played, I thought as I ground the ham. And then I heard it.  Right as I put all the ingredients together and started to mix, I heard Jason giggling his butt off in the backyard.  He was laughing. I was not.  He and Tim had it right.  Play. Do the work that needs to be done. Play. It was that simple.

And with that, my vibe changed.  I took a breath, let go of the work and set about to play with my food.  When the mens came up, they tasted the ham salad and right away made sure that tomorrow there would be Ham Salad Sandwiches for lunch on the job that Tim had for Friday..  My plan A was to have it for dinner.  But Plan B made the working mens happy at noontime and I made chicken quesadillas for supper Friday, which made me happy.

My mood was improved, but not so stable.  I need to keep practicing the positive happy behaviors or I revert to cranky, sullen self-centeredness.  It is my default setting and leads to isolation, which is death for me.  But I know this about myself today.  So, to keep the good vibes rolling, I made a big pot of Gramma Harriet’s meat sauce. Whenever I went to the Cape to see my Gramma, we always had spaghetti the first night.  I opened the back door of her kitchen and with one whiff of her sauce, I was happy.  I was home.  In mild weather, with windows open, I knew what was cooking when I pulled in the driveway.  That smell.  And she would stir it with a well loved wooden spoon.  There would be garlic bread and salad too.  And Gramma Harriet would wear an apron she’d made, that I have now.  So many times we would sit down to eat, and smile.  She would take me to the beach in her sporty new cherry red Corolla  and we would put our feet in the sand.  Or if it was cold, we would sit in the car together.  She would teach me how to sew and then help me make things that were pretty.  We would build a fire in the fire place.  We’d pick big cucumbers out of her garden and eat them outside, still warm from the sun.  We’d go to the Cuzzin’s house and watch cuckoo movies and giggle together. Everything I did with her was special and I knew when I was with her, I was important and we were happy together. (Yes, we had our spats during the summers I lived with her.  But even those, she turned quickly into a great story to tell me and her friends.   The sour feeling did not last.)

Every time we shared a moment together, Gramma Harriet would say, “this is something for the Good Memory Department.”  I would wait for her to say it and then absolutely agree with her.  I mean, after all, once I went back to Worcester, she might be lonely and the house would be so quiet.  But she would be comforted by all the good memories of our time together. I imagined that Grammas kind of lived on the good memories of their grandchildren.  It was a very happy self-centered notion, I admit.

I remember the moment, right after she died, when I realized the bigger truth of her words.  It was all for my “Good Memory Department.”  Every time she said it, she was making sure we took time to notice the moment, appreciate it then and store it for later days.  I have so many things in the “Good Memory Department.”  I was there at the time. I was there with one of the 2 best grandmothers in the world. I loved her and she loved me.  And she made me stop and be in that moment, with her words.  And she made them file into sacred stores inside me to comfort, amuse and hug me when she wasn’t there anymore.  Her words, and that practice was a precious secret to living life on life’s terms.  It was a gift to me to know what truly made me happy in life.

The meat sauce meal made for me, by her, made me happy.  It was that simple.   It is that simple still, if I practice.  So I made the meat sauce and set it to smell up my house all day.  I picked up our new Rain Barrel in Forest Green that morning.  We had one, but it cracked quick.  This one promises to collect water off the roof and store it for watering the new clematis, plants that will grow on the teepee soon, second year strawberry plants, herbs and many, many marigolds.  I hope so.  I got the rain barrel and was still home in time to Jason’s baseball game with my family.

At this game, we played on the big field where the National Little League Champs had played their home games.  And today, two kids announced the names of all the batters as they came to the plate.  What a rush.  I heard Jason’s name and saw him smile with pride.  I heard his teammates’ names and saw them smile bigger and stand taller too.  The kids laughed and ran and hit and tried to catch, and played.  Tim and I and all the families sat and watched and cheered.  It was a happy moment.  It was definitely one for “the Good Memory Department.”

Today we putter about and plant “fings” that will grow.  I am trying to make ribs for supper. We’ll see what happens. The mashed potatoes to go with the ribs were tested by all three of us.  They are definite winners.  I hope there are some left for supper.

Nothing big, but the week has been full.  It has been simpler than the previous weeks,  even though I try to complicate everything.  It has been quieter, even with my shrieks and fits. In a quiet part of the week there was space for the brand new, best idea from Tim.  He has a lot of them, if I hush long enough to hear them.   “You should reach out to Garrison Keillor.  Tell him that you have listened to him since you were so little.  Tell him that you saw him at Mechanics Hall.  Tell him that you love Lake Wobegon and play his stories to your students.  Tell him that you had a stroke too.  Tell him about the blog and see what he says.  You never know.” My husband is the best; to listen to me, love me and make me and my life better. He is the technology guru in the family. Tim reaches out to the world with his questions, over the net and over the phone.  He thinks of these things.  I don’t. Strike that, now I do.  Why not reach out?  So, I just contacted Garrison on the Prairie Home Companion website.  I sent a Post to the Host. I used Tim’s words and told Garrison my story.   And I feel so good right now about simply sending the email. And   I feel so extraordinary to be a part of this amazing family where I get to be with Tim every day.

Every single day he gives me these gems.  I think the gifts like that are there for everyone, every day.  But you have to look for them, cultivate them, seek them and grab them.  I didn’t always do that.  I wanted someone else’s life with their grandiose adventures.  I specifically did not want my daily struggles and chores.   But I do now. They are the simple things that make my life extraordinary today.  And in this town, this woman is strong, her mens are good looking and our son is totally above average.

 

 

Stroke Awareness Month Tawpic for the day:

These words are like lyrics to a “fight song.”  The words are bold and determined.  There is no grey area, it is a black and white concept.  I certainly held on to that idea early on after my stroke.  From the moment that I survived the first night in ICU, I grasped this concept.  I knew that I would weather the storm.  And that was all I could do then, just physically cope from day to day.  I could, and did, face each day on sheer determination alone.  It was that simple.  I survived.

But, things have changed for me.  I have changed. (What a gift!) I still survive. It is what I do.  But I also thrive.  I have “grit.”  Grit is a concept that was introduced to me 2 years ago by my new principal when I switched schools after 18 years, talk about change.

http://www.ted.com/talks/angela_lee_duckworth_the_key_to_success_grit

We watched Angela Lee Duckworth talk about “grit” as the real key to success in school.  I identified with her message, as a key for living my life on life’s terms.  She defined “grit” as “passion and perseverance for really long term goals.” I totally agree.  And I have GRIT today.  I want things out of my life and I work towards them with joy and sustained effort.  Do my goals change?  Of course, all the time.  My friend and mentor talks about “making plan A.  Then God laughs and we meet plans B, C, and D.”  Do we still make plans? Of course.  But we are happier if we realize that plans change because we have practically no control over life.

Right after my stroke I survived. My goal was to go home and then drive my car and then eat. Check, Check and Check.  But that was not my truth. That was not the story I told myself.  I believe that my underlying belief and goal was that I would get better and go back to who I was before my stroke. I wasn’t that happy before my stroke.  That was irrelevant.  I wanted to go back to the comfort and security of that “known life.”

What I know now is the ludricrous, insane nature of that story.  How could I go back?  How could I not be forever changed by my stroke?  How can I not be changed everyday, by everything I experience? And why wouldn’t I embrace change?  Change is the real constant in life.  I can count on change. And I can grow and change for as long as I live.  What a gift.

I didn’t see that essential truth for a couple years after my stroke.  Surviving is what I did, because it was all I knew and what I believed about myself.  Don’t get me wrong: there are times now when I survive, because it is what I do.  I focus on getting through. And I do.  And there have been times like this recently.  If you are lucky enough to survive, life happens.

But I do not spend whole days in survival mode.  There are moments where I put my head down and get through tough, nasty things that happen in my life.  Every moment I am not reflecting on the spiritual truth to be gleaned from the strife.  I am not the Zen senior master Shifu, from Kung Fu Panda.  I am not that evolved.  I tend to be more like Po, the young impulsive foodie panda.  I have moments of calm, punctuated by stretches of chaos.  But I don’t live in the survival mode anymore.  Whatever the storm, it passes and gives way to sunshine and new life.

 

May 18^th 2003

After revealing my swallowing prowess to Mom on Mother’s Day with the applesauce trick and telling my Dad about the Cadbury Crème Egg incident, I prepared for the ultimate “reveal,” to Carole on Monday morning.  It had been a longer than usual weekend with all the developments.  When I woke up in the morning with the swallow still intact, I began plotting and planning how to break it to Carole.  It had to be, let me figure how to put this, worthy of her.  I mean, I can’t imagine that her job has a very positive vibe.  A lot of her patients seem to be worse off than I am.  She has worked a miracle with me.  And I totally don’t think that she has any idea that it would happen over the weekend.  She didn’t talk to me at all about what to expect, or seem to think it was likely that this would happen, this fast, if at all.  All I can do to say thank you to Carole, is to make it a really good surprise.  I want her to see her success, first hand.

My appointment is at 9:00am at my hospital.  I get there early again, but I don’t tell the folks in the waiting room my secret.  I brought my suction and a wad of tissues.  No one seems to notice that I am not using it.  Don’t they realize how different I am?  Don’t I look different?  Things have changed, can’t you see?  Thank God Carole is on time coming out to get me for the appointment.  She always is prompt, but today I don’t think I could wait an extra second without giving away my secret.  Inside me, I am doing cartwheels and screaming and eating a hamburger.  But outside, I sit calmly in my seat and don’t wiggle even a bit.

I see Carole turn the corner from the hall and walk through the PT area.  Her white coat is fresh and bright on a Monday morning.  I wonder if it is a new coat, it should be for a day like today. I smile and say hello and begin asking about her weekend as I follow her purposeful walk back to the room.  In the room, we sit for a second and she gets set up.  She pulls her chair over to be able to face me.  The swabs are set up on ice in the big bowl.  When she gets up to grab the trash can and bring it over to next to her table, I get up saying I need a tissue or something from the corner table.  Carole nods, acknowledging me.  The corner table has a box of tissues, some cups and a pitcher of water.  That pitcher had become part of my plan the second we walked into the room. My execution was seamless.  As she turned to get the trash bucket, I got a cup and hid it in front of me.  As she sat back down on her chair and prepared her chart and pen, I poured an inch of water into the cup.

I knew she would notice the cup right away when she lifted her head to begin the DPNS.  I would only have a second to make my move.  I sat. I held the cup.  She got a swab in hand.  I began raising the cup to my mouth.  She raises her eyes to me.  I open my mouth and take a small sip out of the cup.  Carole’s eyes bug out.  She cries out loud.  I swallow.  I smile.  She stands up and sits down.  “What did you just do?  What just happened?  No!  Are you ok?” Carole can’t stop making comments and asking questions.  Her face has turned red with excitement and matches her fiery hair.  This is too great.  I did it.  I surprised her, in a good way.  And she did it. She brought my swallow back.

The clock is ticking on our session.  It is 9:09am.  A miracle has been revealed and celebrated in under 8 minutes.  But there is much to be done, says Carole.  The swallow is not back all the way.  It needs to be re-trained in a certain way.  We cannot back off on the DPNS.  The stimulation needs to continue to ensure the swallow does not regress, but instead gets stronger.  I need to follow a strict program of what to eat and how to eat it.

BUT NOT UNTIL TOMORROW!  What was that?  Don’t eat until tomorrow? We will have our regular session of swabs today.  Carole will stop a minute early to schedule a Barium Swallow for tomorrow.  She will set up this special test, with a bit of luck, during our scheduled time tomorrow.  She needs the information from this test to make and submit a plan to the hospital, now that things have changed.  But until I have that test, all things should maintain.

For the next half hour, we will do all our swabs and stimulate the swallow, I hope.  For the rest of the day and night, I will bolus feed the formula into my tube for nourishment.  For the rest of the day and night, I will add the water to my tube for hydration.  For the rest of the day and night, I will crush my pills and get them into me through the tube, to keep my blood running at the right pace.  Until I see Carole tomorrow morning, I will resist the urge to try to eat and drink the old fashioned way, I hope. I will do this because we don’t really know what the status of my swallow is until the test tomorrow.  Carole says we need to proceed in the correct way as indicated by what the test says, for my health and safety.

There is one major exception.  I can “manage my secretions.” I don’t need the suction.   Carole reminds me of this extraordinary achievement as my shoulders sag and hunch with the news about not trying to eat or drink until the test tomorrow.  I try to rebound, for her sake.  I stop frowning and blink back the tears and the whine about to escape my lips, for her sake.  I don’t want Carole to be disappointed with me.  I don’t want her to worry about me until tomorrow.  I will (try to) be a good patient, for her sake.

I don’t want her to get in trouble.  I have been “in the system,” long enough to understand that there are very rigid channels that have to be gone through to satisfy the hospital and insurance.  They want things done a certain way, or they will not “cover” the procedures.  Everything that they do to me, and for me, has to be “authorized.”  Otherwise, if they don’t deem it to be required, I get a big bill in the mail.

It has already begun.  The mail used to be filled with get well cards that came in bright colored envelopes with beautiful handwriting and the best stamps adorning them.  Now the mail is filled with statements, decisions and bills, all arriving in white business envelopes with New Times Roman font in black, printed on the outside.  The contents tell my fate.  What do I get to do to try to get better?  What do they deem necessary for the patient? What am I allowed to try, according to their judgement? I have never met them, but they determine my schedule and progress.  They decide how and when I move forward.  They, whoever they are, have the control and the power.  And it is hard to sit with.  Today, I know that my body is better.  This part is working better.  I know it. But for Carole, I will sit tight.  For the next day and night, I will do it their way.

Tuesday Morning at 9am finds me back at my hospital.  I meet Carole in a different part of the hospital.  We are on the first floor now, south side.  We are in the depths of the hospital, far away from any rooms that might have real light from windows.  I was in this room before.  They brought me here on a gurney or in a wheelchair. I can’t remember which, but I was on wheels.  It was right after the stroke.  They brought me in to evaluate my swallow, which was “absent.” It didn’t take them long to figure out that the barium test was useless.  They put some liquid into my mouth, told me to swallow and then watched as it oozed back out my mouth and down my chin.  Someone handed me a napkin.  They realized that there was not some swallow to be measured.  It could not be marked on a scale of 1 to 10.  It was a zero.  My swallow, and I would argue my spirit too, was “absent,” as defined in medical terms.

So as quickly as they wheeled me in, they wheeled me out.  I remember how “less than” I felt at that moment.  I remember so little about how I felt right after the stroke.  But I remember feeling so insignificant in that moment.  I felt humiliated and degraded to the point that I wished I were dead. I knew that I had no swallow.  I knew I would fail whatever test they were going to have me take.  I knew it.  But no one asked me.  And sure enough, I didn’t even really start the test then, and I failed.  And no one asked me how I felt.

Here I was back again, in that room, faced with that Barium Swallow test.  But today, the room seemed brighter.  Carole was with me this time. That’s a good thing. She makes me feel safe.  This time I walked in the door, under my own power. Today, I sit in the big chair, and do what they ask me to do. This time I have a swallow.  There is something to measure.  I know there is, not that anyone asks me.

And I know what my reward could be, should be for passing the test. I saw the reward last time.  I saw what people get for passing the test when I was in my room on the Neuro floor.  I heard about the prize from other speech patients: Lorna Doone Shortbread Cookies. That’s it! The rectangular yellow package with aqua blue lettering and the red Nabisco triangle in the top left hand corner was the holy grail of my hospital. I am not sure why this particular cookie was the material used to evaluate levels of swallow.  But it was.

And inside, the sugary, buttery, crumbly yumminess awaited and surely satisfied all that gained access.  I remember that I had this cookie down the Cape one time, at Gramma Harriet’s house.  That was decades ago and I had only had a few.  But I remember that they were yummy and I left no crumbs.  I had never bought them for myself though.  I guess I was more wrapped up in cookies with chocolate, like Chocolate Chip Cookies, Oreos or Milanos.  They were my go to choices.  I was too young to go for the simple shortbread.  That was “my grandma’s cookie,” not the choice of hip, happening youth.  How silly that notion…  Here in my hospital, I swear there was a black market ring going on for the Lorna Doone.  I mean, our hospital was cool.  We had a Dunkin Donuts, a pizza shop and a sandwich shop too.  I had smelled the coffee with my very own nose. I had had to sit with my family in the atrium while they ate.  I knew there was “real” food in this hospital, beyond the hospital food, which didn’t look too bad either.

But the Lorna Doone Cookie, oh that golden cookie, had a certain undeniable attraction for all here. Certain nurses had them as snacks. They kept their stash somewhere safe and seemed to give them out to certain patients for special treats.  Sometimes they would run out of the Lorna Doones and talk about when the next delivery might be, like they were on a separate delivery schedule than other snacks.  I don’t imagine the cookies were that much more expensive than other snacks.  Why wouldn’t they be on the same order of snacks and in the same volume and delivered at the same frequency?  Why the secrecy?  Why the mystery?

Carole had a few packages locked in her desk for her patients.   When a patient had Lorna Doones in a session, I might see the package wrapper in the trash can, under a layer of my swabs.  There were never any leftover cookies, not even a crumb.

So today, during the Barium Swallow, my eye was on the prize.  Would the swallow be good enough for the Lorna Doone?  Carole made sure I was sitting up straight in the big chair.  She stood beside me and walked me through the test.  The Lorna Doones were sitting on the table, along with cups of water and applesauce. I kept my eyes on that yellow and blue pouch while I did my best on the test.  I did what I was told. Hold this in your mouth. Swallow this.  Swallow that.  Swallow three times. Wait…Check, Check plus, Check plus, Check plus.

And the prize was mine.  I tried to eat them slowly and carefully, but I admit to rapid devouring of the sweet, buttery, golden, and yummy shortbread cookies. Carole went over with me and sent me home with, a strict set of guidelines for eating. We would continue the DPNS four times a week for a while.  The swallow was not secure, she needed me to know that and be careful.

                      

She wanted me to set up an appointment with a nutritionist. I would need to start PT too at the hospital to work on my lesser disabilities now that my swallow was improving.  She said the PEG tube removal surgery would be scheduled soon.  All this she said.  And all this I committed to as my new plan.  I could do this, with cookies.

May 18^th 2016

The past few days have been a roller coaster.  There have been high highs and lows.  I am not very good with the roller coaster anymore.  I used to live in the drama and crave the chaos. As my students say, “you been there Miss, you done that.” Now I really do better with keeping things low key, middle of the road, kinda routine, and on an even keel.  But sometimes life gets crazy busy and stuff happens.  That is ok, sometimes.  I love that my life is filled.  I would not want it to be empty and alone.  That is my choice.  It is my choice, too, to respond quietly and calmly to high highs in my life, and not react viciously, sarcastically in ways that harm myself and others.  Those are my choices.  And so I agree and often quote Charles Dickens’ words in A Christmas Carol. “May you be happy in the life you have chosen.” Yup.

A recent high, high is the Heart Walk and one of the final activities for the year in that area is the Cookie Raffle.  Every child who makes a donation to our red wagon, gets a raffle ticket with their name on it.  The tickets are kept a big bucket.  If you donate more money, your name goes in again.  So the more you give, the more chances you have to win.  And what you win is a Sugarhouse Cookie.  Each year, I pull out all my heart shaped molds.  I make a double or triple batch of Sugarhouse Chocolate Chip Cookie dough and bake 5 different sized BIG cookies.  The cookies are wrapped.  They are brought to school and my kids pick the winning tickets out of the big bucket of raffle tickets. 

This year I made 5 big heart shaped cookies from a double batch of dough.  I love seeing the faces of the kids as they collect their prizes.  “Wow, it’s such a big cookie and it’s shaped like a heart!” exclaimed one second grade winner, with eyes bugging a bit out of his head as he carried away his Big Cookie Prize. What a gift!

Another definite high high was our first time going to the Hanmi Tae Kwon Do “Heart of Massachusetts Tournament.”  Jason actually wanted to be a part of the tournament.  Brave.  The young master suggested that he enter the Forms, Breaking and Sparring events.  He did.  Impressive.  We showed up for the day before 9am to make sure we got a good seat.  Good advice and we followed it.  Inside the school, which I had never been to, were swarms of people from our studio and others.  They were busy getting ready for a day, with their tags and bags, shirts and gear.  They knew what to do and where to go and we did not.  On the inside, I was a bit scared and out of my comfort zone by a lot. On the outside, I hope I appeared calm and encouraging for Jason.  He found a group of his friends to stretch, play and practice with.  I snuggled into a spot on the bleachers and waited.  A young man from our studio, already a black belt, sat quietly beside us.  I had seen him many times at the studio and I wanted to respect his space here today.  But I asked one question about the tournament and that led to quite a good chat. He takes a moment of calm and peace to get ready for the day.  This is his 9^th tournament and for him, what works best is not running and playing before, and using a lot of energy.  He needs a quiet moment, and takes it.  He gave me the inside scoop on how things work for the day.  I felt so much the better for the chance to get to know this remarkable young man, just a little bit.

Last year there had been just over 100 competitors.  This year the numbers swelled to 200.  And each competitor has a team from their studio and family and friends to support them.  The gym was packed. Crowds of people I don’t know in a new place, doing something I don’t really understand, loudly, is tough for me.  It is outside my comfort zone. I know that I spend my day in a big, very loud building with 400 or so kids and I only really know 50 of them well.  But somehow, the smells, sights, sounds and activity of my school became a comfort zone to me over time.  This venue is not my school.  And I am a bit uncomfortable. But I am there.  I am glad I am there and I am doing things to make myself feel safe, like talking to the young man.  And I am there with my “mens” and for Jason.  I can show up today. After all, this day is not all about me.

At days’ end, I can reflect on the event.

1. First and foremost, Jason is amazing.  He is talented.  He is dedicated.  And he was able to maintain great focus in the midst of all the hub bub.  I couldn’t do that.  He won a gold medal and 2 bronze.  I am proud, so proud.  But I can’t ooze too much of this when he’s around, don’t want his head to get even bigger. Tee Hee.
2. The day was long.  It was 2 hours longer than we thought and we left early.  But all 3 of us had the stamina for the day.  Jason to focus and demonstrate skills all day, and Tim and I to sit stillish and quietish on hardish bleachers.  Well done!
3. Our studio is the best studio, for us.  The event itself and all the students and masters involved, demonstrated a level of grace, dignity, agility and strength that was, if I were to give it a teacherly grade, A plus-all the way and all day.  Really and truly beautiful to see what they have taught and so many have learned.
4. Lack of manners, ticks me off. I mean why can’t folks sit down, stay seated and stop talking all the dang time. I wanted to unleash my teacher voice several times in the morning.  Tim helped me see what an over the top loony direction I was heading in. And I did calm down before actually acting on the bezeek thoughts.  I am so grateful for him.  I need a hand of reason in my life.  He is it. I hope I help him half as much as he saves me.

And 5.  Most important note to self: Next year we can bring our own food into the event.  We didn’t think it was allowed.  So I went hungry choosing not to eat what they sold. Tim and Jason went broke trying the foods they sold.  Meanwhile, our studio friends were smarter than me, with a big cooler bag.  I saw it opened and spied 3 bags of cookies, nuts, juice, sandwiches, seltzer, water and a big bag of already unwrapped rolo candies.  They had mercy on me and I ate 3 Rolo treats.  That chocolatey caramel yum on my tongue, vastly improved my mood and made the day better.  Next year I already have a plan to come prepared.  Even if we can’t bring food, we will come.

A low point of the week continues to be some choices that my students make that I don’t think are the best.  The combined effect of their less productive and cooperative choices is a pretty chaotic and kind of hostile vibe in class.  One student, in particular, is seriously struggling.  He is in pain and I can’t take it away.  I hate that feeling.  So I try each day to add sunshine and sweetness to the vibe.  Some days it works.  Some days, not so much.  I am just not that powerful.  But I do have the power to leave that vibe at school.  I choose not to bring that trouble home with me. That is a good choice for me.

Another low point centers around home.  A member of my small, but strong family is sick.  He is in the hospital where he needs to be.  That is a good place to be.  They will help him while he is there.  But I worry.  I can’t make well.  I am just not that powerful.  And worrying doesn’t help.  As a family, we have lit a candle for him and we say prayers.  That we can do.

And stroke creeps in as the day’s final low.   Seems that stroke is never far from me.  It is never far from most, I think.  When one person has their stroke, their family and friends, neighborhood, job and religious community are forever changed.  The effects ripple out like waves from the person who has the stroke all the way out to the edge of their community.  Today, a coworker with one of my favorite names, came to me with sad news.  The father of a staff member had a big stroke last night.  My coworker didn’t have many details.  But he wanted to share what he did know, with me, the resident stroke survivor.  He said that it was sudden and it was bad.  He didn’t know how long it was before the father got to a hospital.  He knew the father had been transferred already from one hospital to another.  We found out from another staff member that things don’t look great to the father who just had his stroke.   His child is of course absent today to be with family.

My coworker came to me and all we can do right now is say a prayer.  Check. We talked about a card or meals going forward, but not right now.  We talked about the heart wagon and heart walk and all the good work we have just done in our little community raising awareness for stroke, getting the message out FAST.  We are helping make a difference in the 80% of strokes that are preventable.  But this father’s stroke is here.  It hit home.

I talked about the present system that gets someone care when they do have a stroke and how I don’t think it’s good enough.  I told him how Time is Brain for someone who has a stroke.  Every minute in the stroke, kills 2 million brain cells.  The right care needs to happen fast.  It is frustrating.  The state is trying to coordinate care, but it is not happening yet.  A possible plan for a better system is stuck in political gridlock. And that is not good enough for me.  My coworker with a favorite name listened to me vent and came out with a great line. The system should “do what makes sense, not only what makes cents.”  A brilliant and probably accurate line.  But stroke doesn’t wait for us to get ready.  It comes.  And it blows one life and all those who care about him, to smithereens.  It strikes fast and severe.  And here it is again, near me.  But I could be there for my coworker, with a favorite name, to talk to.  We could pray.  And we will be there for our coworker in the days to come.  I can be there for people today.  And they come to me, which is incredible to be a part of a caring community who see that I have something to offer.  I am so lucky.  Most people who have strokes are not so lucky.  I just wish for a day when new strokes don’t savage so many lives, quite so frequently.

With high highs and lows, I do what I can to find balance.  I bake.  Tonight after a walk with my 2 and 4 legged “mens,” I made a batch of my own Lorna Doone Wannabees.

They are too hot to eat right now.  But the house smells sugary and buttery.  My house smells like Lorna Doones! V. Cool.  And with that blessing, I am more than content to climb into bed and cozy up with a cup of tea and a velvet eared beagle.

Stroke Awareness Month Tawpic for the day: 

“We believe what we tell ourselves.”  Hmmm.

After 43 years, I have to agree.  Nancy, my Buddhist Reiki Master, would talk about the “stories” that we tell ourselves.  She said that often we “have old tapes running in our heads.”  These powerful tales become truth. I became defined and limited by the stories I told me about me, and about life.  In 2003, my story was one of a warrior. I told myself to survive my stroke and rehab.  I defined myself as a fighter.  I fought and I won a couple rounds.  I didn’t die from the stroke.  And I drove again.  And I got my swallow back. But after a while, those tapes weren’t enough.  I existed in survival mode. The body healed but the spirit was sick and dying. Today life is very different: intentionally, on purpose and authored for joy on a daily basis.  The tapes are not old ones. And the stories I hear, make and tell myself, change daily.

Story I lived in April 2003:  Fight on Rachel!  Don’t give up! If you just get your swallow back, everything will be ok. Everything will go back to normal.

Story I lived in the rest of 2003 and beyond:  I can swallow.  I survived.  I did not get my life back. Everything is not ok. Nothing is the same except the mechanics. I am not a teacher.  I am not loveable.  I don’t know who I am.  I don’t like what I see.  Why did I have a stroke?  Why me? Why me?  When will this be over? Why can’t I just die?

Stories I live today:  Why not me, have a stroke?  I was saved for something.  How can I best be of service today? What can I create and share? What do I dare try today? What would my mentors and angels want me to do today?  I can be a better teacher.  I need more coffee.  I love my family.  What else can I make Blue for Stroke Awareness?  What should I bake today?

What are your stories?

 

 

May 12-15^th 2003

I feel good about the work with Carole this week.  She did a lot of note taking.  She said there were many responses.  But now it is the weekend.  I am alone and there is no stimulation.  The Coumadin dose was upped from 12.5 mgs for the week to 12.5 alternating with 15mgs a day.  The blood is too slow.  That is not good, especially on the weekend when there is no one. On the feeding side, I am quite a professional.  It is good to have the mobility, not being attached to the Kangaroo.  Lola and I take short walks now, up and down our street 5 times a day.  She is my nurse and I follow her instructions.  She says that walkies are good.  So we do.  Ciro is spending a lot of time during the day on the porch relaxing in the sun.  It is good to see him relax a bit.  At night, he is right by me with Lola.  The two of them seem to take turns watching me.  It’s a good thing. My baby Zoebug is having a bout of her barfing.  Is there bulimia in the animal world?  She seems to have a good stretch, put on a bit of weight and then turn around and throw it all up til she is back to skin and bones.  Now is one of those times. I give her food and love and keep an eye on her.

Weekend nights are the hardest.  The sun seems to set earlier on the weekends, although scientifically I know that’s impossible.  The nights are so long anyway.  And there is no work with Carole during the days to get me tired or make me feel like I am doing anything. After the evening walkies with Lola and cookies given and a can slammed, then what?  More time to be alone and worry.  I check my pupils in the mirror a lot more now.  I check for even pupils.  I check for the pupils to react as I turn the bathroom lights off and on and off and on again.  I think I am doing ok.  But I am not sure. So I check a lot because I am alone for so long on the weekends.  No one would know if it came.  I want to be able to call 911 before I can’t speak or move.

Tonight I check an awful lot.  I just can’t get comfortable.  When it is time for my last can of the night, I head into the kitchen where I keep the cans.  I get it ready, undo my tube and pour it in.  As I say the “glug, glug, glug,” something happens.  Something was different.  Breathe. Breathe, Rachel.  Get your suction.  Where is the suction?  Grab the phone.  What just happened? I found the phone.  I have the suction.  I don’t need the suction.  My mouth is dry.  I don’t need the suction.  I said the “glug, glug,” and I think I swallowed. I think I did.  Did I?  Focus, Rachel.  You can do it!  Grab your suction in one hand and the phone in the other.  Be ready now.  Do it again.  I did it. I swallowed.  Yup, all the parts from the lips to the tongue, over the back of the mouth and down the throat, worked together to take that spit down the old fashioned way.  It feels so weird.  I better check my eyes.  Maybe I hurt something when I swallowed. Maybe it is right before the next stroke now.  Lights on and  Lights off.  Nope, the pupils are reacting fine.  I head back out to the kitchen, looking for Lola.  I stand very still and tell her to watch me.  I focus on the sequence, visualize the spit sliding down inside me.  And then, I do it.  I swear, that dog smiles at me.  I do it again and again.  I am smiling a lot and babbling to Lola.  Ciro and Zoe come to see what’s going on in the kitchen.

In my mind, I think about how I have to test out how good this swallow is.  Tonight I am the Freaky Strokey Frankenstein monster.  But I am the Scientist too.  It is middle of the night in my fortress.  I have to know. I mean, spit is one thing.  But what about food? Could I? Should I?  Of course I should.  I mean, why not?  If I can’t swallow something more, then I will just dig it out with my finger and suction.  I’ve got the tools for swallowing problems. I mean, what’s it gonna do to me if it doesn’t work? What do I have to lose?

I grab a can of formula and quickly slam it back down onto the counter.  Really Rachel? You are not going to break this fast with that crap, are you?  I guess it counts as sustenance.  It has kept you going.  But is it meant to be actually taken orally?  Nahhhhhhhhhhh.  So get something else.  And get it fast, before the swallow disappears again.  But what?  The cupboards and fridge are bare of food, except cat and dog food.  I haven’t had any need for food.  There is none.  Oh great. It’s the middle of the night, and I haven’t got any food.  I start pacing  around the house, rage and sorrow building.  It is night and the babies get excited by the laps I am doing.  But it is not play time.  Focus Rachel.  I stop in the dining room and breathe.  And there it is;  the answer to my prayers.  (Chocolate is the answer to just about any question imaginable.)  There is the stash of REAL English Cadbury Crème Eggs that my Dad brought me.  The set of 9 is complete, minus one.  I had my Godmother over two weeks ago and I asked her to eat one, enjoy, and tell me every last gosh darn detail of the experience.  She didn’t want to.  But I was losing hope of swallowing, it was egg season, I had the eggs, and she came to visit and I really had nothing else to offer her. She did it for me.  And she told me every touch and taste and smell detail from the foil wrapper, through to creamy milk chocolate with the yellow and white cream inside, not too sweet. Very thick and rich cream with the perfect thickness of chocolate covering the liquid heaven inside.  She walked me through the whole thing describing every single detail.  I knew at the time that she really didn’t want to, but did it for me, and I was so very grateful.

I had put the rest of the stash of 8 eggs on the big shelf of the built-in along with Ken’s Maple Syrup.  My sterling silver coffee service and favorite footed tea pot kept them company.  I went right to them.  I took a plate from the set of china.  And I moved to the dining room table behind me.  But I did not sit.  I stood strong.  I found the seam in the foil and gently peeled it back, carefully trying to get the foil off in one piece.  The chocolate underneath is smooth and perfect. There is not a nick or a ding on the egg.  Some eggs get bashed and damaged in transit, but not this one. I smell it all over.  There is the sweetest smell ever from Real Cadbury Crème Eggs.  Whenever I read “Charlie and the Chocolate Factory,” and Dahl describes the chocolate waterfall, the one that Augustus Gloop falls into, I KNOW what that smells like.  And I know what it tastes like.  It is this Egg. Every single Cadbury Crème Egg is consistently sublime.  It doesn’t change.  It never disappoints.

My mouth doesn’t open wide easily right now.  The muscles are all buggered. During my sessions with Carole, I stretch and get the mouth working good.  But right now I am not very patient.  I don’t really want to do the stretches.  I don’t even know if this will work, if I will work.  So I better cut the egg into pieces.  I get a small knife from the kitchen and bring it back to the egg on the china plate on the table.  I do sit down now.  I cut through the perfect thickness of chocolate once.  Now the egg is in two pieces.  My hands are shaking.  I stop cutting and tell myself to pull it together.  Calm.  I do and I take up the knife again.  I make another cut.  I do it right this time.  Well done.  Stop cutting and try Rachel.  Try to eat before the swallow goes again.  I put down the knife and pick up a small piece of the precious chocolate with a good sized dab of the crème on it.  I can smell it coming to me as I raise it up. I open the mouth and pop it in.  I shut my mouth and I stop thinking.  I stop planning.  I am not the scientist anymore.  I chew a bit.  And then I just swallow the creamy, chocolate, gooey goodness.  I do.  I do.  It goes right down.  But it does feel strange and the bits and bobs inside me are confused.  I do have to sort of tell it to keep going, all the way down to my tummy.  I think all of me forgot this thing called eating. When it is done, that one bite, I find that I am just sitting there in my dining room.  I have no idea how much time has passed since the first swallow.  I check the clock on the tv.  It is after 11.  And I notice how quiet the house is.  And the street beyond is quiet too.  Strange that it should be so silent there, when inside me there is so much life and noise right now. Regular folks are sleeping by now, even on the weekend I don’t see many lights on in the neighborhood.  I can’t sleep now.  I can’t rest.  I sit right back down at that table and eat that egg.  Carefully and methodically, I eat.  Slowly I make sure that I swallow each bite.  And I do it.  And now I look at the clock again. It has taken time to eat the egg.  It is after midnight.   It is a brand new day.  And today, I swallow.

I can’t settle down.  I can’t settle into bed.  I sit on the couch and watch TV.  I keep the suction near, just in case. So much is happened tonight.  And it is a good thing.  But I am not comforted. I feel a bit more uneasy than usual and I am not sure why. I know I am getting really tired and I know it is really late so eventually I crawl into bed and doze. When I wake up, I reach for the suction.  Then I remember and I try and I swallow again.  It still works.  I am still swallowing. I go to the kitchen and pour in a can of formula after I feed the babies.  I have to take the Coumadin, colase, etc.  They are in pill form.  I don’t dare try that maneuver. And I don’t try to drink the liquid canned formula either.  Liquids, I have learned from Carole, can be tricky to swallow.  I do what I know works and crush the pills and pour the can in my tube.

Today is Mother’s Day and I have to go over and visit Mom after church.  I am going to bring her some flowers.  And I will sit with her while she has lunch.  I take Lola with me, because hmmmm.  Why do I take her?  I need her.  I feel safe with her.  On the way over, I stop at Price Chopper to get the flowers.  I bring the suction with me in the car.  But I leave it there with Lola while I pop inside.  I have the tissues wadded in my hand if I need them, but so far, so good.  The flower department is right near the door on the left.  But as I walk in, I turn right.  I head straight past several aisles and then turn left onto aisle 9. I go halfway down the aisle, turn left and stop.  There in front of me are the little tubs of applesauce.  I pick up a pack.  Just one pack.  At the “home” and from Carole I have learned that applesauce is the right consistency for people with swallowing problems.  It is thick, but not too thick and thin, but not too thin.  It is not hot or cold, but room temp and that is the best.  It is bland and not spicy and that is the best too.  I have to try this out today.  I have to see if this swallow is real in the daylight. Now, I head for the flowers, totally unaware of what I buy.  I take the flowers and apple sauce to the register.  I check out.  As I am standing there at the counter, inside my head is screaming, “I can swallow.  I can do it. Yesterday and for so many yesterdays, I couldn’t.  But today I can.  And I am going to eat this applesauce. I will!”  But I don’t say a word out loud.  I know better.  A person yelling excitedly about being able to eat, essentially baby food, is likely a nut job.  I don’t want that right now.  I just want to be normal.  So I pay for the apple sauce and flowers and no one there knows.

Over at my Mom’s, I give her the card and flowers.  She is very appreciative and sets about getting a vase from the cupboard over the stove.  She picks the blue purple metalicky glass vase fills it with water. She is chatting to me about church, she saw Farmer Ken and he sends his best to me, while she trims the flower stalks and arranges them in the vase.  She cleans up the counter, throwing away the stalks and washing the knife and cutting board. She puts the flowers on the dining room table next to the two candlesticks in the center.  All the while I am thinking of the one tub of apple sauce that is inside my purse.  My purse is sitting on a chair in the corner of her dining room near the chair that I sit at.  I have a wad of tissues in my hand.  But I haven’t used it for my spit.  Very carefully and quietly, I have been swallowing my spit while she talks.  Focusing on the swallow is probably why I haven’t really heard much that she is saying.  My mom gets her lunch ready, bread and cheese and fruit are cut and arranged nicely on the plate.  I only brought one tub of applesauce into her house.  The rest are in the car.  Lola is under the table, hopeful that Mom will drop her or give her a bit of cheese or cracker.  As she is eating and chatting about the sermon at church, I get up and go to the kitchen.  I grab another tissue, but I also grab a spoon. I head back into the dining room and sit down on my chair, with my purse on my lap.  While Mom tells me about the hymns that they sang, I open my purse.  I put the apple sauce on my lap and the purse on the floor.  Without fuss or t-do, I put the tub on my placemat and begin peeling back the foil.  I am not sure when Mom notices what I am doing.  When she does she asks what I am doing.  I hear her in the distance, but I don’t look up.  And I answer that I am just going to show her something.  I dip the spoon into the tub and get some sauce on the spoon.  I lift the spoon, open my mouth, and in it goes.  And down it goes.  And now I look at Mom.  I think she was holding her breath.  Now she exhales and smiles.  Slowly and carefully I take my time, but I eat every drop of cool, smooth, sweet sauce inside that tub.

I tell her about what happened last night with the Cadbury Crème Egg.  I will call my Dad and tell him when I get home.  It has been 12 hours now and I am still swallowing.  I have eaten the egg and I have eaten the tub of applesauce.  It’s a good thing, right?  I look ok, right?  This is what I ask her and she asks me if I am ok doing this.  I am not sure.  But I have done it. I tell her what I know about applesauce being a good consistency for me to be eating.  She seems to accept that.  The chocolate egg, late at night, worries her a bit.  “Was that safe?” she asks.  I don’t know, but I see Carole first thing tomorrow morning.  If I am still swallowing then, she will take it from there.

After I am sure she thinks I am doing ok, I head home.  I really want to eat more applesauce.  I am not hungry.  But I want to taste the sauce. I want that sweet blob of sauce inside my mouth, on my tongue and inside my cheeks. I want to feel it move around and then send it rocketing down my throat.  I will not try anything else.  But I need to do that.

How do I tell my Dad this story?  I am still in doubt about what happened in the dark to me alone last night.  How could the swallow just switch on like that, in that moment?  I don’t believe in miracles. But it was gone and then it was there.  I can’t believe I ate the egg, except I can see the wrapper in my trash, and I was there. And are there magical healing properties in the English chocolate?  I mean it seemed to help my swallow on all fronts. And I can’t understand where the spit in my mouth has gone for the past 18 hours.  My Mom was floored by the applesauce and she saw me do it.  I saw the total shock and awe on her face.  The scene played out fine in one take.  It was right out of a thriller flick.  It is also an Easter resurrection story of sorts, complete with miracle.  But we are not a religious family. And this part of my story was sweeter and family friendly with the transatlantic traveled Cadbury Chocolate as the centerpiece. It is a fictional, wild, fairy tale to be sure.  And that is how it should be told.

I dialed the international code for England and followed with the cell phone number to reach my Dad and Step Mum on the boat.  With any luck, and I do believe in luck, they would be moored somewhere there was a signal.  “Ring Ring,”  trilled the line.   I had gotten across the Atlantic.  My Dad picked up and I launched in with my tale.  It was a dark and stormy night, I began.  Well it was dark, but not stormy, except inside my own body.  No, I was not so dramatic in the telling.  Last night, I told them, I got my swallow back.  And I wanted to eat.    I had to break the fast. But there was nothing in the house to eat, except for one thing.   I had the Cadbury Crème Eggs he had brought me at my hospital for Easter.  And that is exactly what I did.  I broke my fast with the only food I had at home, the good stuff, real chocolate that had crossed the Atlantic with my Dad, because it was Easter and that was our tradition. I heard him laugh and in my mind I saw him smile, with tears.   That was the story, the simple, inconceivable truth.

 

 

 

May 12^th 2016,

Tale of Tears and Toenails

(A 6^th grade Soap Opera-so says my “gem”)

As all good stories begin, once upon a time there was an exceptional 101 year old, neighborhood school in our fair city. And in that exceptional school, there was a sixth grade class nearing the very end of their elementary school career.  The lights of middle school loom large and bright.  Fear of the unknown, growing up and pimples, runs deep through every child.  And every child has been performing difficult deeds spanning many days, in the subjects of mathematics and literature to show the kingdom their level of academic prowess.  The tremendous trepidation of 7^th grade, coupled with extreme exertion has made for some less than ladylike and gentlemanly behaviors.  Children have been seen doing and heard saying that which should not be, in school.  Respect for the Elder Esteemed Educator has waned.  Defiance is on the increase and due diligence to duty decreases daily.  The Elder Esteemed Educator (me), AKA E3,  has lost heart, been beat down, humiliated, ignored and is otherwise not feeling the good vibes right now from her young prodigies.

To illustrate this vibe is one of the daily conversations between E3 and sweet Shakespeare.  This wee one can’t be more than five years old.  Shakespeare and E3 meet at days end every day, when the wee one loads onto a great yellow carriage with a score of her fellows to go home for the night.  Each day the line, or lately lump, of children file up the carriage steps.  And each day Shakespeare stops the line and pauses.  She raises her thoughtful eyes to E3 and queries, “Miss, Did any of the youth say bad words to you today?”  She has heard about and indeed been witness to some foolish comments directed at E3.  This apparently insults her sweet sensibilities.  At first E3 would tell the wee one that she had indeed borne some discourteous language.  Then E3 changed her response to asking Shakespeare how her day was and had she done her best.  Both E3 and Shakespeare daily agree that they have done the right thing by their varied tasks.  E3 looks forward to the angelic face that always checks on her day, stopping a flood of fellows in their tracks and makes sure all is well for her endeared educator.

E3 greets each new morn with good heart puts her mind on the potential of the day.  E3 and the Greek Goddess coteacher, AKA the G2, valiantly lead the students through their day.  But the sassy and silly, brazen and bold behaviors of the many are taking their toll on our 2.  When the bell tolls at the end of day, E3 and G2 wearily, weakly and sadly stagger to their trusty steeds and ride off home for the night.  The evening is not one of rest for our two.  Love of home and family sees them on an endless journey in service of their beloved spouses, children, church and 4 leggeds.  Laundry, food shopping and meal preparation, cleaning, washing, teaching, organizing and activities of the beloved heirs fill the hours til sunset, and beyond.

After educating the youth, E3 ran home and changed clothes.  Water was grabbed, a quick cuddle given to Gus and the heir was picked up from his academy.  All celebrated with an hour at the park, soaking up sunshine and enjoying the fresh air with friends.  It was glorious.  When they returned to the Blue home, bedecked with bunting and lanterns of blue in honor of Brain Attack Awareness, the heir worked on homework dutifully.  E3 prepped supper for her family.  The 4 leggeds were fed and cuddled.  E3 bathed herself and supervised the heir.  She set about to finding and making a suitably divine double chocolate cookie as a Thank You for a coworker who had generously given our E3 her prize winning basket of canine goodies.  (Insert image of cookies and link to the recipe here.)

With this accomplished, she rounded up Ciro for his annual vet appointment.  The other four leggeds in the blue home, Gus and Rondo would have their visit tomorrow, together.  But the Green Eyed Elder, sweet love of E3, Ciro would go to the vet by himself.  This ensures complete attention of the new Doctor could be given, undivided, to himself.  The ride over the roads was a noisy one for E3 and Ciro as he howled a sad, desperate song in her ear for the duration.  Once at the vet, a mistake was discovered.  The visit was unnecessary.  There was no need for a needle today.  Elated and still in possession of her coins, the two went home and all in the Blue home enjoyed the marvelous meal of perfectly grilled Hamburgers and fixings. Ahhhhhh, bliss!

After supper, E3 and her Magnificent Man aka M2, relaxed and enjoyed a great Red Sox Game on the telly.  The heir to their throne came loudly upon them, crying pain and distress over the severe hangnail of the big toe on his left foot.  E3, tsssked the toe nail, for growing so long and breaking off so deep.  There would be pain for sure in the removal of the offending nail.  She offered the clippers.  She offered the scissors.  She offered to tear the nail right off. But each loving offer of help, was vehemently denied by the heir, repulsed even.  In fact, he exclaimed “Mom, I don’t TRUST you.”  What did he say?  What did he mean?  Oi, the knife in her maternal heart struck deep.  E3 excused herself and behind the closed door of the loo, she broke into sobs.  Hot tears ran down her face. Her shoulders wracked with the rejection.

But tears are not in E3’s nature.  She is, as one sweet friend often regales, “too blessed, to be depressed.”  This is true and E3 began to calm and collect herself with this awareness.  The muscles in E3’s face are another great reason not to weep, for they are spastic in nature after our dear lady endured a brain attack, years back.  When she weeps, the muscles in her face freeze and her visage contracts into a distorted, less than beautiful sight.  Before this dreadful event occurred, E3 took deep breaths and gave herself a “good talking to,” as her beloved Grandmamma Harriette of Cape Cod had taught her.  E3 weighed the day’s events, both home and school.  School had worn her down severely revealing an emotionally sensitive side rarely seen for our dear lady.  The heir had issued but one snide comment.  Her reaction was way too grandiose for the offense committed.  She was assured, in her heart and soul that the heir adored her.  Yes, on a daily basis, he would banter and word joust with E3 and M2.  To be sure, he was flexing his wings and often the result was sassy and stinging.  The safety and security ever present in our Blue home was felt by all who resided there. There was no question about that.  Fiery Personalities and Passion abounded, but always the root, was love.  And so E3 reflected that she must “check herself before she wrecked herself.”  This wise wordage adorned the walls of her classroom at school.  Tonight she, herself, would heed the wisdom that she oft quoted to the prodigies.

And sweet slumber fell over the Blue home.  On the morning of the 13^th, E3 geared up for a good day.  Copious cups of coffee with cream filled her tank.  She kissed M2 and Gus, patted Ciro and Rondo, and after blowing the heir a kiss of luck, headed off to school.  Prodigies this day were at peak volume.  Undignified arguing was done by one usually, on the beam student.  Young Carter engaged in offensive word jousting against a much esteemed colleague of E3. Shocking.  Other prodigies were invading each other’s space and making a mockery overall of the days academic pursuits.  Sadness fell across the sixth grade of our exceptional school. It was barely an hour into the school day and a black cloud of less than coolness, shrouded our heroes once again.

E3 and G2 exchanged knowing looks across the school room.  The unity of their spirits gave E3 an idea.  Perchance, she might tell the prodigies a tale, of toe nails and tears. In the bleak desolation of this moment, would she bare her soul to the youth and risk the full rejection she had but sampled from the heir the night before?   Would the minute flicker of hope for peace inside her, be enough to bring forth a tale that might inspire the youth for better thoughts and deeds? She wavered for a moment and then began.  All youth closed their mathematics for the moment. E3 began to tell the tale, the very same tale I have shared with you, dear reader.  And with each sentence she quietly, carefully, gently and oh so honestly uttered, the black cloud lifted inch by inch.  “You see, my dear ones,” she said, “it is not enough to just get by and make it til the last day of school.”  Our next 23 days together are too precious to me and to you to dishonor them in this foul manner.  Each day is a gift and I have learned that things change on a dime.  If today is all I have, then I must enjoy and celebrate this day, with you.  I love my life.  And you are in my life.  And I do not just “get by.”  I am worth more than that.  I cannot afford to refuse the gift of today, when I am not guaranteed a tomorrow.  My brain attack has taught me this. So come along with me. Dear ones, you are nearing the end of this part of your childhood.  You can see that your life will be in your own hands fully, in a matter of mere years. This is terrifying and exhilarating for you, I know.  But do not continue to practice this basest of behaviors.  You know that I will not assess you the “mean” way.  You are not merely the average of all your day’s efforts.  You are a work in progress. You must do better for others, be better for yourself and strive for greatness in each breath.  That is a pursuit worthy of your time, and mine.”

The words were said.  The day continued with mathematics, literature, science and geography.  At day’s end E3 and Shakespeare met again before the great yellow carriage. “Miss, did the kids say bad things to you today?” she kindly queried.  This day, E3 smiled big, paused for a moment, and gently cupped the wee one’s face in her warm hand.  “No, my love, today was a gift we all enjoyed.”  The words were true and heartfelt.  With Shakespeare’s face still at hand, E3 inquired how her day had fared.  Had she heard bad words today or had it been fair?  The wee one answered, “No bad words did I hear, Miss.  But Saint Nicholas, my friend- the lad behind me in line- was not saintly at all.  He slapped me across the face. Indeed he did.”  With that, she uttered a hope for a better tomorrow and head held high, climbed the steps into her carriage, and headed for home.

E3 didn’t what to think about what Shakespeare said.  She was caught off guard.  Her own day had been so much improved from the previous.  There was a pink cloud of joy and peace around her.  This news startled her and darkened the pink cloud a bit.   The one comment was not enough to darken her spirits for long.   As she charged over the roads towards the Blue Home, she smiled.  This moment was to be cherished.  E3 had followed her heart and been true to her sensibilities.  Fueled by the strength of her convictions and with the support of her angels, goodness had triumphed over evil, for a bit.

The Blue home was again bustling with activities of the day.  There was so trip to the park for the young heir.  The promise of playing football with M2 after supper was enough to keep the lad on track without tantrum.  Homework was done, reading begun, and water and snack devoured with relative serenity.  Young heir prepared himself with uniform and belt for Tae Kwon Do.  The practice of which centered his energy, conditioned his body and regulated his spirit.  He awaited M2 to bring him to the studio.  E3 flew to the attic and got the cat carrier, dog harness, lead and several towels.  The back door was locked to limit the whereabouts of Rondo.  He hid in plain sight in the living room.  It didn’t work.  E3 scooped him up and jammed him into his carrier.  Cage door secured, Rondo began a whining discontented yowl.  Gus happily got into his harness and lead under the misidea that he was going for a walk.  The heir opened doors as E3 came forth with cat carrier in the left hand and dog lead in the right.  Three in the car hurried to the vet, one 2 legged and 2 four leggeds.  The heir waited at the Blue Home for M2.

At the vet, both were checked in.  “Do you have any concerns about Rondo?”  the tech queried.  “Rondo bags many bats from our attic.  But it seems to agree with him.  He is the picture of health.”  Notes were made in the file for the Doctor, while chuckles came forth steadily.

“Do you have any concerns today about Gus?”  the still smirking tech asked.  E3 lovingly began, “He’s our best puppy luppy.  We love him so.  He is not the more slender since last year.  And above his hips there is a large bubble.  It is not tender or seem to be a bother to our Gus. I worry a bit, but my beagle friends tell me, it is a beagle thing and not to be alarmed.”  Again, notes were made in the file for the Doctor, while the tech shook her head back and forth in bemusement.

E3 remained v. concerned about meeting the new vet.  What would she say about Rondo, AKA Batman?  Was he overly robust?  Was the onset of rabies imminent? Would she look shamefully at the girth of Gus?  Would she report E3 to the DDS (department of dog services) for the condition of his nails which remained untrimmed since the last annual visit?  Was it neglect?  What were the masses above the sweet Gus’s haunches?  How much would this cost?

Dr. V came in and led the visit and her meetings with E3’s beloveds with treats.  For each lovely she produced a suitable pillow on which they would lie while being examined.  And when the needle drew near, she distracted them with a sumptuous vittle.  Neither of my babies ate the treat then, but did appreciate the obvious sign of respect being given in the offering.  Both were marvelously behaved.

The results of the visit are as follows:

• Rondo weighs a perfectly perfect 11.5 pds, up half a  pound from last year.
• Rondo has the shiniest softest coat.
• Rondo took his shots very well.
• Rondo needed an extra booster of rabies shot as he will not cease and desist destroying bats.
• Gus can be lifted onto an exam table by a mere mortal.  I saw it.
• Gus gained 3 pounds from last year and weighed in at 46.3 pounds.
• Gus’s weight gain went unmentioned and seemed to elicit no concern.  Therefore Gus is perfect, as we knew.
• Gus’s bubbles and growths on haunch are not a problem.  They are and I quote, “his new love handles.”
• Gus’s breed being beagle, apparently has a beloved and ever expanding sized status with the veterinary world.  The beagle is not held to similar health/weight standards.  I want to be a beagle.
• Gus has almost no teeth left.  Evidently beagles don’t need teeth to gain weight.  Again, I tend towards a beagle.
• Gus did extraordinarily well with his manicure and pedicure.  A true gentleman.
• The bill did not make, me, E3 faint.

With glowing reviews and a clean bill of health, the 3 headed home for a supper of chicken and quinoa and green beans, oh my, with her Blue Home family, prepared by her mom.  Scrumptious.

Another was over and slumber beckoned.  All had exerted and all needed rest.  To bed with all!  Good night!

The new day would dawn and back to school E3 would go.  And the youth were back to the youthful tricks.  The moment of glee and peace was over.  The pink cloud passed, fueled by some preteen sass and attitude. The day was spent being truly human and wavering between acts of great kindness and mild baseness. Cellular Division was scholarly explored, but the volume of Rectangular Prisms, not so much.

Weekday exertions gave way to weekend celebrations.  The Blue Home celebrated the anniversary of the return of the swallow of the Brain Attack survivor, E3.  True to tradition,

We brought out the Real Cadbury Crème Eggs that have long since expired for eating, but not for admiring and due reverence for their magical and sacred powers.

We brought out the celebratory seltzer bottle, a truly blessed batch named “Unicorn Kisses,” The name is truly venerated by the family as a reference to a mystical, mythical beast, smooches of love,  and the most importantly as the name of E3’s father’s beloved Narrowboat, in England.

We brought out this year’s real Cadbury Easter EGG of the Dairy Milk, in purple majestic foiled splendor to devour on this blessed day.

And so, befitting the genre of our tale and the nature of our epic’s heroes, we can proclaim with confidence to all:  THEY LIVED HAPPILY EVER AFTER, just for TODAY!  (nowhere near THE END of their story.)

 

 

Stroke Awareness Month Tawpic for the day:  

I can certainly identify with these words.  Most of the time and most of the people I know, don’t understand what it means to be ill or disabled or in pain, when you don’t look the part.  And I don’t wish that most people truly, personally know how I feel.  I do not want them to identify with what stroke survivors can go through on a daily basis.

Right after my stroke, I did look and act sick and different.  I was disabled in my speech and I couldn’t eat and I moved super slow and stiff.  I shuffled my feet when I walked and couldn’t move fast or far.  You saw Rachel and you knew she was ill.  But over time, I have changed and healed in many ways.  I don’t often look or act sick (other than the colds and bugs that are shared when you work in a school), I hope.  In my head, I think I sound and look a lot worse than I do. In my head, if I am very honest, I mostly see the Rachel that my students 6 weeks after my stroke: weak, suctioning, drooling and drooping.  My view of self was so altered by the sudden severity of my stroke.  The pictures of me stuck in my head, and stick there still. I know what this stroke survivor’s body and soul deals with on a daily basis.

In reality, now, I don’t look the part of someone who has had a stroke.  You could say, that now I have the “invisible illness.”  My face doesn’t droop too severely, I only slur my speech when I am totally exhausted, I can swallow and eat, I don’t drag my foot (much) and I haven’t got a claw hand.  I don’t look sick.  Even 13 years out from my stroke, at age 43 I am still well below what society thinks is the appropriate age for stroke.  I am not elderly.  I am still too young to have had a stroke.  (Although, the statistics will burst that illusion, if I just become aware of the facts.)

And it has been 13 years, I do look fine and I am still young, so what is the big deal about having my stroke.  It’s over, right?  It’s a part of the past, right? I can work.  I have a family.  I don’t need the machines anymore.  Aren’t I fine? What do you think?

Everyone has a story.  If you survive, life happens to you.  In fact, each face we meet, lives with a whole host of daily dilemmas, scars and past war wounds.  We never know what somebody endures and survives, and so we teach our children to be kind to everyone they meet.  We know, in our hearts, that what we see of our fellows exterior is not the whole story. I don’t want to imply that I believe that we are ALL ill.  No, but we all have an “invisible” self that would feel better, be better,  if we were all a bit kinder and gentler with each other.  It’s that simple.

 

May 10^th 2003

Yesterday the Coumadin dose was 15 mg.  During my session with Carole from 11-12, I was encouraged that there were responses in several areas of my mouth and throat.  She had to break more often to make more notes.  This is good.  I try to visualize the responses getting stronger and stronger and working together.  On the way home from the hospital, a leaf or something fell towards the car and I saw it out of the corner of my eye.  On reflex, I tipped my head back and looked out the sunroof to see what it was.  Oh crap!  I don’t want to tip my head back and sever the artery.  All night I wavered between visualizing the DPNS working on my swallow and my artery erupting from my tipping my head back.  No sleep.

Today is a new day and I am not swallowing or stroking just yet. Coumadin is back down to 12.5 mgs today.  They tell me to add one extra can of formula today to my “feeding” schedule.  I guess they think I have lost enough weight.  I think not.  The one benefit of this d#@n stroke is that I am skinny. I know that it has been quite a rapid 30 pound drop.  And hey, it’s not like I am recommending that anyone have stroke for weight loss as an good alternative to Jenny Craig. But I am 30 years old, sitting at home alone with no man, no babies, recuperating from a big ole Stroke!  For the first time in my life, I am not battling my weight.  I have lost weight and am considered skinny by those charts that hang in the doctor’s office.   I am going to vainly and smugly enjoy that simple fact about me, for today.

I have Carole at my hospital for DPNS from 9am to 10am.  I get there way early and just chat with folks waiting for the PT or OT or Speech appointments.  I am ready with my suction in our session.  She is moving fast with the frozen swabs.  She grabs the packet and rips off the top.  The swabs are flying around my mouth and throat quickly jabbing at the dead receptors.  The cold vapor is still rising off the new swab. The used swabs are chucked into the trash can with one hand while the other reaches for a fresh packet.  Sometimes Carole misses the trash can and the swabs land on the floor.  I have time to grab them up, make sure they get in the trash, and swing my head up with mouth open wide enough in time for the next swab.  Quite a team we are making these days.  Carole marks some reaction in the points on my tongue and at the back of my mouth.  They are almost in sequence even.  But the swallow needs a powerful thrust and contraction of several groups of muscles, in sequence, to get the food down.  A few perks of reaction, at a couple of points is nothing to write home about. I don’t get excited about a few blips on the radar.  I just get back to work and make sure I don’t keep Carole waiting.

May 10^th 2016

Woo Hoo!  The “Crack” was a big hit at school with kids and staff alike for a post-test reward.   You just open the container and this sugary buttery cloud wafts dreamily up your nose.  Ambrosia! All testing students smelled the sweet treat before testing, dreamed of it during testing (or perhaps it was just me with visions of “crack” dancing in my head) and tasted the reward after testing.  The indulgent nature of the sugar was too much for some students. Some students knew better and politely declined to eat the treat. No worries!  Giggles abounded as the kids devoured.  They worked so hard on the testing, I mean all really tried and worked towards solutions. I brought the remnants to the staff lunch room.  When the bell rang at the end of lunch, I left the container on the table and my coworker giggled and said, “You can’t forget the crack!  It might fall into the wrong hands.”  Laughter and sugar, and outdoor recess in brilliant sunshine that is finally here after a week of cold rain, is the best reward in my book.

And after school, I have another “Woo Hoo” to shout!  Yippee works too.   Today is BOTOX DAY for me.  It has been six months and I am seriously ready. I get the botox, which is the poison botulism in a medical form, to deal with the spastic muscles in the left side of my face and neck. Spasticity means that damage to the brain during the stroke, blocks messages between muscles and the brain.  So the muscles are stuck in a very strong contraction, involuntarily for long periods of time.  The spasms decrease mobility and can be wicked painful. The muscles spasm, thus the name “spastic.”

The sternocleidomastoid muscle which runs along the middle of your neck and sends tendons off all over the place are arguably the strongest muscles in your body.  And that’s the one that is spastic on this stroke survivor.  You probably are familiar with the “claw” hand on stroke survivors.  The hand is curled up and not able to be uncurled and used with much dexterity, if any.  This is a very common condition for Stroke Survivors.  My brain stem stroke gives me conditions all over myself with a bit less rhyme or reason than the norm.  Remember that the right side of my entire body has no feelings of heat, cold or pain. That is a blessing if you have spasticity, I suppose.

So my left side spastic muscle in my neck and on my face leads to pain like someone has the left side of my head in an iron vice and is really turning the screws. Cozy. It also messes with the trigeminal nerve which is responsible for a lot of face sensation and things like chewing, speaking and making my nose run wicked bad too.  Fun.  It gets hard to breathe through my nose, so I become a mouth breather. Ick.  And at night, trouble breathing and pain and congestion really help make for a good night’s sleep. Not.

I am so grateful that I have the 3pm appointment with Dr. K, my beloved neurologist at my hospital.  From school I dash home, give Ciro a nibble of wet food, brush my hair, give Gus a quick cuddle and grab Dr. K’s treat.

I always bake for my neurologist.  He, and anyone in the neuro office that he shares with, is always appreciative.  Gramma Harriet taught me well.  Good service should be rewarded, and home baked goodies rarely fail to please.  Thank You’s are so important.  I am not great with the written notes, but I am consistently dedicated to giving thanks with goodies.

I am so grateful to be able to do something for Dr. K.  His care of me since day 1 in 2003, is second to none.  I only see him twice a year now, for the Botox which gives me such a miraculous relief of pain for a month or so. Each visit, I give him a big hug.  We talk about our families.  He asks me how the baking is going.  This time, I can tell him about the writing I am doing. Each time I see him, I ask if it is getting any better out there?  Are people listening to FAST and getting help soon?  Dr. K tells me that it is not much better.  People still think that if they get a good night sleep, they will be better in the morning.  Not with a stroke.  Time is Brain.  I want to spread this message so badly.  80% of strokes never have to happen, if we heed the warnings and PREVENT them.   Every time I see Dr. K, I want better news from his end and I want to tell him about what we are trying to do to get the message out.

Back in the day I saw him all the time.  I had multiple MRIs, consultations and new treatments for the variety of neurological conditions that came over time and was constantly being re-evaluated on the healing process of my artery.  Was the artery opening back up?  Was it healing open wide enough?  Were there any pockets?  I had no real idea what any of this meant back then.  But I felt safe with him.  And now, he helps me.  I am a good patient for him. I trust him.  And so I must bake. His favorite in Chocolate Zucchini Cake.  But today I have Blueberry, Lemon, Zuke Bread with a Cinnamon Sugar Swirl for Dr. K.  I made two loaves.  As it is the first time I am trying this recipe, http://www.yankeemagazine.com/recipe/watchtides-lemon-blueberry-zucchini-bread

one loaf was immediately cut up last night for tasting.  I mean, what if it were horrible?  I couldn’t give Dr. K something gross.  We have to taste test, right? So we did and it passed with flying colors.  My mom noted that it might be a contender for my Quick Bread entry at the Spencer Fair this year, High Praise indeed. I mark the recipe on the August page of the calendar to remind me.

Once I have the goodie in hand,  I  pick Jason up from school. The two of us go to my hospital together.  Jason goes into the fantastic hospital gift shop and picks out a present.  Yup, I go to the doctor and he gets a present!  He picks out a plush, stuffed Siberian Husky.  He doesn’t pick the smallest one either.  It is a great choice and I buy it because it sits next to the stuffed doggie that I got when I was in the hospital for my stroke.  Thirteen years later they are still selling the same puppy: If it ain’t broke, why fix it?  The stuffed dog, quite beaglelike really, was a gift and a comfort and treasured by me to this day. I tell Jason about my puppy at home and we introduce them when we get home from Tae Kwon Do. 

New treasure in his hands and bread gift in mine,  we ride  up the glass elevator and sign in to the appointment.  The office already has my dose of Botox.  I called the specialty pharmacy a month ago, ordered, and paid for my dose to be delivered to my hospital.  Today I make a copay for the visit when I arrive. The ladies that manage the office are so nice and always so impressed by Jason. One, is a big Red Sox fan and I am glad our team is doing well so we can chat cheerfully.  The second lady saw me on TV in the Heartwalk PSA.  She thought it was me, but she wasn’t sure.  And she wanted to check with me but had no idea when I’d be in.  But I did come in and she did remember and I was flattered she recognized me. The new canine treasure in Jason’s arms brought about a whole chat about dogs.  We showed a snap of Gus and she showed her Pitty, Beau.  Then she HAD to show us her new granddaughter.  What a gift!

The nurse took us into the special room and we made ourselves comfortable.  This is no ordinary botox that I get.   No one just takes out the needle in a regular office and injects the botulism into wrinkles on a forehead.  (Believe me, I have urged and bribed Dr. K with goodies to get him to put some of the Botox into the ever increasing deep wrinkles on my forehead.  But he never does!) This special room has a big machine.  It is an Electromyogram Botox appointment so I assume the machine is the electro part. It makes a lot of noise and gives a lot of info to Dr. K about the level of spasticity in my muscles.  Based on the levels that he detects through lines stuck on me, he knows right where to inject the Botox.  This Botox essentially paralyzes the muscle for a bit.  The spasm stops, so the muscle can move with ease and be a bit more under my direction and guidance.  I have had great success with this treatment.  There is a risk that my swallow could be affected as he is poking about in the same region of my body to inject the botox.  But I trust my Doctor, and have felt only good vibes after treatment, never a problem swallowing.  So it is full steam ahead.

When Jason was little, he sat outside the room or went for a walk to the desk when Dr. K came in with my dose. He might have been a bit put off by the needles or noise.  Recently, he is intrigued by both and chooses to stay for the visit.  So this time, I ask him if he will take some pictures during the procedure for the blog.  I want to get the wires, machines, needles and bizarre facial expressions I have to make to help Dr. K find the best spot to inject.  Jason is all for it.  But he says he will have to take a video too because he needs to get the noise from the machine.  Seriously?  Yup.

Dr. K comes in and I give him the goodie.  He says it is too much and I shouldn’t have and then tucks it under his arm to bring to his office while he gets my dose of Botox.  He says he heard I spoke for the nurses and says they were impressed.  I love that he hears about me through the grapevine and is proud of his patient.  He introduces me to a woman interning with him who is going into rehab medicine.  Excellent.  He asks if I need the Botox and I answer yes before he finishes speaking.  I am rude to interrupt, but v. excited to get treated.  Dr.  K leaves to get my dose and the intern asks me about my rehab experience and a bit about my stroke.  I get going, excited to share.  Jason chimes in too.  And the three of us pass the time happily talking about stroke stuff.  (Does that sound bizarre, happy and stroke in the same sentence? Truth for me though!)

When Dr. K comes in, I hand Jason the camera.  Dr. K attaches two probes to the back of my neck with the lines that run to the machine.  I face the wall. Dr. K asks me to resist his push and grimace, to make the muscles really pop.  I do and he takes the needle in hand, inserts it into my muscle and pauses, turns on the machine which shares great banging info and slowly injects some Botox into the muscle.

The needle is big and goes in deep, I think.  The muscle is hard and painful, I know.  As the medicine goes in, the pain is sharp so I dig my hands into a fist and wait, forgetting to breath.  I say the pain is sharp, but I am a wuss and am not sure this description is accurate.  Dr. K stops the machine and takes out the needle.  He repeats this in 4 or five locations on the left front side of my neck.  Jason records the lot.

The needle comes out.  The machine goes off.  Dr. K removes the lines and wipes that seeps a bit where the injections went in.  Jason tells the intern that last time, “the blood gushed a lot from each hole in my neck.  This time is nothing.”  Out of the mouths of babes.

I give Dr. K a big hug and a handshake to the intern.  The next appointment is made for November and Jason and I head out, up the stairs of the atrium, past the waterfall and out to the car.  I love the sky outside my hospital.  We have to fly home and get Jason changed up for double Tae Kwon Do.

The neck, my neck hurts a lot right now.  I try not to worry about a possible harm to my swallow from the poison that I dearly love.  I focus on the pain and visualize the medicine meeting the muscle and doing its job.  At the end of the day, the pain fades.  All in our house are tired from the day and I am optimistic that tonight I will finally, at last, after a couple of months, sleep well.  That is something to be so grateful for.  And I am.

Stroke Awareness Month Tawpic for the Day:  

It’s another way of saying, living life on life’s terms.  It’s another way of putting the Serenity Prayer.  I need to hear this message 100 times a day, every day.  I KNOW that my default setting is isolation.  But  today I also KNOW that my human happiness comes from being  with my peeps, always (2 legged, 4 legged or no legged nature.)  So I must “retrain my brain” for life on life’s terms. 

This stroke survivor has to practice good things, every day  to really know stuff.  “Retrain the brain,” is the phrase my Crochet Guru taught me.  I saw her making beautiful blankets that grew and grew.  And she told jokes that made me laugh and laugh, when I didn’t know I could.  When she heard that I was a stroke survivor, she told me that I should learn to crochet and make Granny Square afghans.  She told me that she had read research that said that this particular stitch, when you crochet it, actually reconnects synapses in the brain. The repetition of the action, from hands to brain, actually makes the brain healthier.  I believed her and did as I was told.  I believed that I could be teachable.  And I had faith in my Crochet Guru to teach me.  I think it works, for me.  And even if it doesn’t, I got an endless supply of blankets that people seem to be loving getting as gifts and I love making.  So healthier brain or not, I am happier and that’s good enough for me.

       May 7^th 2003

       15 mg. of Coumadin is the dose for today.  That is up 2 and a half mgs.  So today I will take 3, orange 5-mg, tabs crushed in the PEG tube. I guess they think that the blood should run a bit faster. I guess they think the blood is too thick and running slow.  I guess that means it might get stuck going through the artery.  I guess the artery might not be healing right.  I think the next stroke could be today. 

       I have Carole at 10am down at my hospital.  I need to pick up more of my pills at the pharmacy. The post office is next door, so I will mail the mother’s day card to my mom then.  I have to put the car insurance bill in the mail too.  VNA might come today or tomorrow.  And my Godmother, dear friend and coworker, will visit today after school.  Busy day.  And I get to drive myself today.  The route of errands is mine to make.  V. Cool.  I bring the suction machine packed in its bag.  I made sure to charge the battery last night.  I am all set on formula for now.  I will bolus a can when I get home from the errands.  That will be lunch. Right?

Driving is good, but weird.  It comes back easily and I feel strong driving.  They told me I was safe to drive and I believe them.  Sometimes when I am stopped at lights, I reach over and grab my suction tube.  My mouth is full of “secretions.”  I turn the suction on and very quickly put the tube to my mouth.  I get the “stuff out” and drop the tube back to the passenger seat.  I hope I did it fast enough. I hope no one saw the tube and me using it.  They will think I shouldn’t be driving because I use the tube.  I am not well enough to drive and they will call the cops.  What if a cop sees me use the tube?  I make sure there is no cop around when I grab the tube.  Should I pull over and park when I use the tube?  Is this legal?  They said I could drive, but do they realize that I have to use the tube?  My mouth is clear now.  I don’t think anyone was watching me.  The light turns green and I am on my way.

At my hospital, Carole goes through the swabs at great speed.  I have to use the suction a lot today, but I keep up with her and she never has to wait long.  Usually, I grab the suction when Carole turns to her chart to make notes on where she used the swabs and if there was a reaction.  She has made a couple of notes today that there were a few reactions.  They are happening like fireflies in summer, not predictable or sequenced, but definitely visible.  Definitely real. We need to work on the sequence of reactions.  A lot goes into a swallow.  I never knew.  But now, as Carole tries each area in order, I visualize a blinking firefly on the hot summer night.  I visualize watching the firefly on a very specific flight pattern. 

After the session is over, I notice all the folks working on their PT and OT in the big room outside Carole’s little room.  I think I want to work on the flexibility and strength now that I am driving.  But they have said that right now, all I get is the Speech.  But I watch them for a minute before I check out and visualize my muscles getting stronger too.  I hit the pharmacy and the post office on my way home and accomplish both goals.  I do bring my suction into both stops in case the lines are long at the counters.  I have to use my suction at the Post office but I escape the pharmacy without needing to use it.  I cannot look at the lady behind me in line when I use my suction at the P.O.  I cannot bear the pity look. 

At home, I am grateful to visit with my Godmother, dear friend and coworker.  She is exhausted after school, but still has a smile and stories for me.  And she says that everything is set for me to visit school tomorrow.  I don’t want to go.  And that is the understatement of the year.  I really don’t want to go there.  But she says that I am expected.  She says that she will be there.  And if I go tomorrow, I don’t have to do it again. With that thought in my mind, I know that the Coumadin will do its job today and I will not have the next stroke today.  I have to get to school tomorrow.  And then we will see. 

May 8^th, 2003 

       Today is my Dad’s Birthday.  This year it falls on a Thursday.  Some years, his birthday is on Mother’s Day, but not this year.   I will call him later.  Or maybe I should call him now.  He is on the boat with my step mom. Do they have passengers?  Or?  I have no news, but I should call.  He might be in a place on the canals where there is no signal.  So I should try now.  But I have to get ready to go to school.  I try now.  I do not reach him.  But his voice is on the message and I say Happy Birthday.  I wonder where they are and what deliciousness they will eat for his birthday.  Are they moored up in the countryside and going to grill lamb chops maybe?  Or are they in a town where they are right next to a good pub or a fish n’ chip shop for a meal out?  Will Dorothy make trifle or Chocy Cake or what?  I hang up and get dressed. 

I gotta be extra careful taping up my PEG tube.  Last week, I came out of speech and got into Mom’s car at my hospital to head home.  As I sat into the passenger seat, I didn’t notice that my tube was not taped up across my belly.  It was loose.  I didn’t notice.  I just sat into the car, careful to roll my head forward.  (I NEVER tip my head back at all.  That will sever the artery.  I know it.)  So I sit in the car and HOLY HOLY HOLY PAIN.  I have never felt anything like it.  I moan for a second and quickly check myself so as not to alarm my mom.  When my breath comes back, after a couple minutes, I tell her what happened.  My PEG tube was loose and I sat on it.  It was pulled, yanked from me and stuck under me.  The pain, shock, tugging, yanking, gut grabbing sensation was unlike anything this girl ever knew.  In that instance I got a glimpse at how boys feel when they land on their “crown jewels.”  I told my mom that and we both giggled.  I know the sensation I felt is not exactly as a man feels when he hurts his “privates,”  but I truly think that I got as close as a girl can get to knowing that pain.  It does take your breath away, for sure.  But after a few minutes, I moved on. 

       So the tube is safely taped across my belly and I have clothes on.  They are still home clothes, not school clothes.   But the top is a sweater that I haven’t worn since I got home.  I brush my hair.  I spray perfume and put a little powder on my death pale face.  That is as good as it gets.  I head to school.  I use the suction at each of the two lights on my 5 minute drive.  I sit in the car for 5 minutes and use the suction.  There is nothing in my mouth, but I sit.  The car is turned off and it is getting hot inside the car on this sunny day.  But I don’t get out yet.  Finally driven out of the car by lack of oxygen, I walk as tall as I can,  towards the loading dock door, which I pray is open for trash to be taken out.  It is.  I head through the empty cafeteria and try to avoid the lunch ladies.  They spy me and wave and say how good it is to see me.  But I can’t stop and chat.  If I stop, I won’t make it. 

I head into the office and wave again and try to smile back at the people staring at me.  I know they care about me, but there is pity in their eyes.  I can’t stop and sit and chat with anyone.  I have to make it upstairs.  I walk up the ramp, winding around to the third floor.  In one corner of the ramp, if there are no kids, there is a sort of blind spot where I can suction before I hit the classroom.  I take a second and suction.  At the top of the ramp I could go right in the side door of the room that was mine.  But I don’t.  The side door to the second grade class across the hall is open, but I rush past that too.  I hear kids and see my fellow teacher.  But I rush on.  I head down the corridor and go through the double doors into the pod that has the three first grades, two second grades and two third grade rooms opening off it.  I go through and rush into the teacher’s bathroom. I suction is safety, even though I know I blew past kids and teachers recognizing me, their shock and talk,  I need 10 more seconds before I can face. 

1. I have to go in.  There is someone by my side.  I can see through the glass pane in the door to a mass of kids, their hanging papers, the bright red, yellow and blue cubbies, the flag near the board, the alphabet above it and a lady teaching above the heads of smiling kids. She is taller than I am and skinnier than I was when it was my room.  She has curlyish hair in a bob, I think.  I can hear the laughter of the kids, the sound of a pencil sharpener whirring, a chair scraping the floor and the teacher  giving a direction, “OK. 1, 2,3, eyes and ears on me.” I don’t open the door.  I don’t know who does.  I don’t step into the room, only into the door way.  And so I am in the colors and sounds of the room.  I see warm smiles,  busy blinking eyes  and hands covered in marker and paint pointing at papers they have done that I must see.  I hear a hundred voices at once.  I smell pencils and snack.  I can feel the heat of all their bodies and motion.  But I don’t go a step further into the room.  I watch and see. I see the teacher lady moving around asking kids to show me a few things.  I watch and listen.  I don’t know how long I stood there.  My mouth is full.  I say goodbye.  I think I drooled a bit.  Crap. I have to go. 

I turn and now I am out the door, around the corner, through the double doors and behind them in the corridor, I suction.  I breathe.  I can’t remember getting to the car.  I don’t remember the drive home.  I can see and feel and smell all that was in that classroom still.  But it is not mine.  I am home now.  I am cold.  I can’t speak to Lola or Ciro or Zoe.  I feel like I could cry, but there is nothing inside me to let out.  I am so cold.  I strip off the sweater and cover the tube with plastic wrap.  I head for a hot shower.  Lola sits on the mat outside the tub.  Ciro is on the sink.  Zoe plays with the tissues in the trash can next to the sink.  She finds a q-tip and bats it around the bathroom.  I stand under the stream of hot water.  I stand for a long time.  I did it.  I went there.  And now I am back.  Slowly and mercifully, that which I saw at school, all that I smelled, and everything I heard fades a bit from my eyes.  I focus on breathing and standing tall.  I focus on washing my hair and rinsing it well.  And eventually, I turn off the water.  I open the curtain and there are my 3 angels.  It is time to feed them.  I have to take Lola outside.  My hair will air dry. I am due for a can of formula and there is a Poker Tournament coming on soon.  

 

 

 

May 7^th and 8^th 2016

Some days are tougher than others.  Friday was a tough one at school.  I am overly sensitive right now.  And I hate being emotional and touchy feely.  I think that doing all this writing about the early days after my stroke is a really good thing, but I am sure it is bringing up a lot of emotions.  My Reiki-Master- Buddha Nancy taught me that “if I really touch the pain, it will lose all power and disappear.”  I know it is true.  And I know it is time.  But it is hard and I am raw.

 My students are going through their own things.  I would not, for $1,000,000 go back to their age. The brain is on fire with growth, but so are the hormones. They are on the razor edge of child and adult, and it almost always draws blood.  My students are no different than I was.  And yet, I kept every crazy thought and pain and feeling inside me when I was their age.  I was silent in my agony.  My students are more vocal.  They share their angst, loudly, angrily, with me.

And I am not wearing my usual super hero shield which deflects all this energy back into the universe and absorbs none of it.  For it is NOT about me.  My friend/angel Jennifer told me over and over, “You are just not that important Rachel.  It is not all about you.”  This may sound harsh to some.  But to me it was/is the greatest comfort, relief and gift. I would worry about whether or not so and so was talking about me.  Or I would worry about whether I did the right thing.  Or I would whine about how this one and that one seemed upset by the color socks I had chosen that day and should I go home and change them. And my friend/angel Jennifer would tell me, “you are not that important, Rachel.  It is not all about you.”  And I could breath. I could get right sized and move forward.

In this case, on Friday at school, I know that my kids are not angry with me.  (Although the words they yelled at me could be interpreted by a thin skinned person to be that.) They are not in strife or turmoil over what I do, have done or will do. (Although some behaviors could be interpreted by less strong veteran to be insulting or rude.)  I have reviewed my actions and words, and they were all good. No,the pain and outbursts of the few students (not the majority) are NOT about me.  I am not that important. Usually I know that in the moment and can let it go.  Today, not so much.  I left work feeling pretty poopy, to be honest.  But I did the next right thing and picked up Jason at school and headed to his friend/my friend’s house for a play date.  We moms of our sons have become friends.  And she is a gem.  We chatted.  I listened to her and saw some of her great work of the day. She listened to me about my day.  And as I shared the happenings with her, the pain and poopy feelings lifted.  I got right sized.  Her nodding head, encouraging words and smile, healed me.  I was utterly exhausted when we left, but infinitely better at heart. 

At home, we had a quick nosh of cheese, crackers, salami, and 2 cupcakes that Tim had brought from the Queen’s Cups.  I had wanted sugar at school.  I had needed sugar at school.  Tim brought me sugar (the cupcakes) at school, but I wisely chose not to spoil either the cupcake or my tummy by eating them when I was so emotional.  I gave 2 cupcakes to the two students who joined my Heart Walk team and were going to come to the walk the following day.  The other two cupcakes came home with me.  I love it.  Tim and Jason and I made meat and cheese sandwiches and had at the cupcakes with forks.  The crumbs were cleaned with finger tips and I felt better.  We dashed to bring Jason to Tae Kwon Do class.  I did the food shopping.  After we unloaded the groceries, we jetted back to the studio for the Board Breaking Evening.  Jason, and about 60 other kids, broke boards in 3 rings of the studio.  No child broke all their boards in the same way.  Some boards took many tries to break.  But teachers encouraged and all families cheered and clapped for every single student.  The smile on everyone’s faces with the accomplishment of a split board was huge.  The room was alive from the energy of the audience and participants.  What a rush!  And I was only watching…

Back at home, in the dark, I baked the rest of the cookie dough into Blue(ish, not green) cookies for Stroke Awareness Month. I have given up on a name for them, we just eat them.  That’s the best.  Then Tim and Jason and I headed to bed.

Saturday MAY 7^th was the Central MA Heart and Stroke Walk. I defrosted some chicken bone broth that was accumulating in the freezer and threw it, chicken and veg into the crock pot.  Tonight, after the day, there would be hot, homemade chicken soup for supper. Today is also Kentucky Derby day.  I found a recipe for a Kentucky Hot Brown Casserole and would make that this afternoon to go with the soup and the race.

So the walk was really here. After all the preparation and planning, it was here.  And in keeping with May of 2016, it was raw and cold and damp outside. There have been years at the walk when people walked fewer laps because it was so hot.  Or maybe I just walked less those years and used the heat as my excuse.  This year folks walked more, I think to keep warm.  Other years, after walking Tim and Jason and kids have played ball on the field kicking up lots of dust into the dry sunny sky.  Not this year.  The field was wet.  There weren’t many kids and the air was a bit too cold for good football. I got my white survivor cap at the survivor’s table again this year. But this year, another woman got a white cap when I got mine.  We smiled and patted each other, one stroke survivor to another.  That was the only other white cap I saw that day.  But that is still a 100% improvement over last year.

Tim had managed to turn the FAST bumper stick I designed and the title he had given the blog, into T-Shirts.  And they were done yesterday.  He made it happen, with the help of a great recommendation of Guertin’s from the great friend who runs the shop where Jason gets his baseball cleats.  Tim had gone down to Guertin’s shop and organized the design format and picked a color and paid and they had made them and now here they were.

 

Everything about the shirt and how Tim did them, amazes me.  They’re perfect. 

And Tim wore one to the Board Breaking Event last night.  And right away, a woman we never met, commented that FAST was about Stroke Signs.  And she proudly rattled off Face, Arm, Speech and Time to call 911.  It was amazing and exactly what we thought could happen, spreading the message of FAST somehow and helping prevent the 80% of strokes that can be prevented.  I knew it was that simple and the first 5 minutes debuting the shirt, proved it to me and Tim.  Yes, we did a fist pump right there, right then. 

So I had to wear my shirt for the Heart Walk even though it was 40 degrees out. I went up in the attic and found the bag of thermals that Barbara had given me before she moved south upon retirement to a warm land where thermals don’t exist.  I found the bag and quickly put on a nice warm thermal shirt and all day thought of my friend hugging me from far away.  It did warm my heart, but the thermal shirt with T-shirt over it didn’t quite warm the rest of me.  It was like Halloween when I was a kid. If I had a costume that I wanted to wear, there was no way that I was covering it up with a coat while trick or treating, just to avoid pneumonia.  Nope, not me.  Too vain.  The shirt looked great for the heart walk.  But the cold in my bones today is brutal.  Oh well.  I could have done what my supah smaht student who came to the walk with his mom did.  He slipped the T-shirt OVER his winter coat.  He was warm and sharing the message.  Oh, the genius of youth.  Not my youth though, he wore the t-shirt and covered it with a flimsy sweatshirt.  He was happy and unzipped to reveal the shirt for pictures which made me happy.  Tim was probably freezing cold too, but he wouldn’t tell me and “dampen my spirit.”  HA HA on the weather related funnah. 

At the walk, I saw my AHA guru and he absolutely gorgeous 5 month old son.  I had reached out to the AHA over the internet years ago and become connected with her.  Year after year she has given me opportunities to be involved and to help. She has watched Jason grow and change.  And now her son is here.  I had seen pictures, but this was real and so much better. Her hugs to me and Jason and Tim are the best.  She admired the shirts and asked if she could buy one.  “Of course not,” Tim and I said as we gave her one from our bag.  And she put it right on, right then, over her AHA work jacket.  That was great.  I couldn’t stop purring inside at my pride over my family and the joy of seeing her growing family.  It was a great moment.  In retrospect, I might not have been purring, I might have had the onset of chattering cold bones.  Hmmmm.

Many members of my team were smart.  They submitted their donations online and stayed warm and cozy that morning.  So our team looked to be just us 3 Henrys.  And then I saw my supah smaht student and his mom.  There they were, ready to go.  And so we were 5 with the power of many.

 The demo team from Hanmi Tae Kwon Do came.    In white uniforms on a grey day, they stood in formation on the green field.  The rain spit and then the music came on.  For 3 minutes, their moves made the crowd hot as if it were midsummer. They were on fire.  As soon as they were done I said, “I have cookies.”  I didn’t think.  I just spoke.  Who says things like that?  I do, I guess.  And I did have cookies.  And they did devour them.  Their yum yums and smiles warmed me a little bit more. With all that warmth and spirit fueling us, we did our walk. 

As we rounded the far end of the park, I saw a minivan pull in the gates. A few more steps and I heard a voice say they were looking for “Mrs. Henry and the Heart Walk.”  I stopped and there was one of my students with her collection envelope in hand.  She wanted to get her donations to me.  She had said in class that she would try to come.  And here, at an obscure gate of the park on the opposite side of the city from school was my student.  And at just the moment when she asked, there we were on the exact part of the route where she was.  There are no coincidences.  I squeezed her in a big, huge hug.  She found us. What a great surprise gift.  Thank you God.

We only did one lap.  Jason only played a couple minutes on the field.  The icecream truck that was parked next to our car, turned on his lights. So of course, in the almost ice, gentle falling rain, Jason and the supah smaht student got icy cones to cap off the event. The heated seats in the car felt so good on our ride out of the park.  Usually we cap off the healthy walk with a big Italian deli sandwich and icecream.  We earned it. Right?  But this year, a cold meal did not appeal. My face/jaw was literally frozen pretty well shut from the cold morning.  So, unlike my usual selfish nature and driven too it out of necessity I asked Jason and Tim what they wanted for lunch that day.  Jason was too busy with his icy cone to answer just yet.  But Tim had a quick answer.  “What about Coney Island Hot Dogs?”  And that was it.  We had to go.  Ever since I have known Tim he has told me good stories of Coney Island Hot Dogs where he had gone as a child with his dad or when he was at the Boy’s Club.  It was such a good memory for him.  And with 36 years in Worcester, I had never evah been to this Worcester institution.  And so with Tim’s suggestion, the choice was made.  It was just after 11am and I wasn’t sure they’d be open.  But they were. Tim said that you go in the door and go left to the counter and order.  I agreed that I wanted the works on mine and a hot drink and then headed off to the ladies room.  I had not been able to face the cold outdoor port a potties at the walk and so was now quite focused on my mission at the back of the restaurant.  (And for any and all who are interested in such things, it was the cleanest nicest one person bathroom.)  Tim ordered and when I came out, the “mens” were heading for a booth up front in the window that Jason had picked.  We had our pick of the booths then as there were only a handful of customers.  But by the time we left, the line was 20 deep down the counter and booths were filling up.  And the wait then would have been worth it. So yum.  And Tim said we had to add our initials to the walls.  So we did.  

And we devoured our dogs.  I was grateful for the hot tea Tim got for me.  As I wiped my mouth with my napkin and patted my full belly, I saw that they make homemade macaroni and cheese.  We have to come back soon for that, definitely.

We headed through the cold rain and got into our house where the chicken soup was smelling like the cure to all that ails me.  I added two layers of fleece over my clothes and put together the Kentucky Hot Brown Casserole http://eatathomecooks.com/kentucky-hot-brown-bake/. I found the recipe tootling around Pinterest last week.

 We headed off to see our friends and I enjoyed a bit of crochet time on my latest blanket.  The colors are inspired by Easter and a basket and flowers.  But the pace of the afghan says it will be ready in late summer, not for spring.  My yarn ran out before I completed the row. That particular yarn is necessary to the blanket but just not long enough.  It is a discontinued yarn so only one thing to do, pull out a few rows and use the yarn on a smaller part.  So I happily pulled out the old work, wrapped up the yarn into a ball and began to redo the desired yarn, and sipped countless cups of hot tea:  A pleasant afternoon and home to the food and the race.

  

After supper, Tim and Jason assemble the mother’s day gift that I picked out for my mother for tomorrow.  Jason really does a great job putting it together.  I think it is a great gift.  It is practical but still v. cool.  And Jason can help her with it.  Fingers crossed.  With that done, we settled to bed early and slept a bit later than usual.

May 8^th 2016

Today is Sunday and it is both Mother’s Day and my Dad’s 80^th birthday.  Jason greets me as my eye cracks open with a wonderful card and story that he made at school.  He can be so sweet, sometimes. I will enjoy this moment. Jason and Tim give me a frame that says MOM with a picture of Jason a few years ago wearing His Red Hat and Cape from the Heart Walk.  Jason was born with chylothorax which makes him a heart disease survivor hero, like his Mom.  One year he got the hat and cape at the walk.  He still pulls out the outfit at times.  And I love the picture.  He and Tim are certainly my heroes!  Tim also gives me a hilarious, and seriously good cookbook.  You see, every week as I make the food shopping list and plan the future meals, I ask him what he would like to eat. Tim’s canned answer has become, “chicken, pork or steak.”  And I answer, “great idea, we’ll have eggplant.”  I never know what the f@#* to cook and he doesn’t dream of food the way I do.  (except when the suggestion for Coney Island Hot Dogs came out of his mouth yesterday.  That as inspired.)  So Tim got me a cookbook, WHAT THE F@#K SHOULD I MAKE FOR DINNER? The Answers to Life’s Everyday Question (in 50 F*@#ing Recipes)  by Zach Golden.  The middle two letters of the first expletive look like a fork and knife crossed.  For real?  Yes, this is the perfect gift for Tim’s wife and Jason’s mother: a woman who dreams of food but stumbles with turning that into the edible meals required by her “mens” three times a day.  The actual recipes are make me laugh and drool, but in a good way.

What a way to start this day, laughing with family, over food.  The day continued with the blissful pampering of the “mens” doing all the laundry.  Well in reality, Tim did the laundry and Jason thought about helping.  They played a game of chess on my dad’s chess board.  

It was a very quick game and not ending to Jason’s advantage, but both loser and winner shook hands firmly. And no one cried. All the Sunday odd jobs that I do for the week, Tim did for me.  He always wants to help, but I get going, not talking, just moving, through the list in a tornadic fashion and then they are done and there was no chance for assistance.  Today I was banished to write, in the study with cups of tea and coffee and Ciro curled up behind me.  I left the kingdom to the king and now I must say thank you. I went out to Trader Joe’s late today and alone.  I called my Cuzzin on the way to and my dear friend and mentor on the way home.  The weather in Tennessee and Florida is very different than in Massachusetts today.  But talking to them during my ride, brought the sun out for me for a time.  Good stuff.  Speaking of good stuff, I loaded up at Trader Joe’s with more yummies than we can reasonably consume.  I talked my way through the store to all the folks that are there every week.  They are the best people and have known Jason since he was an infant.  Even without him with me today, they still smiled and we chatted. Jason stayed home and tried to lure Tim into playing 10 games rather than doing  10 chores. 

After lunch, I settled back in to the study with Ciro to write some more.  I bounced up to get moving a bit and make a cup of tea after an hour. My Dad called as I was making the tea.  We had a great chat about his birthday celebration earlier in the week with my aunt who is working in England just now. What a gift to imagine brother and sister together with old friends in a special place. It sounds like they had quite the celebration.  My dad was getting ready for bed after a day as lock keeper duty. 

So when we hung up and I set the kettle to boil for a second cup of tea, I remembered that tomorrow at school, we are testing again.  This time is will be math.  And I have to make “Crack.” White Chocolate Cracker Candy is the more innocuous name for it.  My Crochet Guru introduced this delicacy to me as an alternative to the Caramel Matzoh Crunch that I make for Hanukah.  It is a close cousin to the crunch, but instead of matzoh this uses saltines, and instead of brown sugar you use white sugar and instead of semi-sweet chocolate you use white chocolate.  The name is certainly cause for alarmed excitement. The product guarantees similar results as the Monkey Balls from the previous round of testing.  This treat will surely have them laugh out loud and release pretest jitters or console posttest blues.  

I told the kids that I would make them “Crack” for Monday and I must be true to my word.  Yes, this treat is sinful to make and consume.  And yes, it is questionable to give it to young brains trying to excel on a test. But I will let you judge.

“Crack”

Preheat the oven to 350 degrees.

Line a cookie sheet with parchment paper. 

Cover the paper with two sleeves of Saltine style crackers.

In a heavy sauce pan, melt one cup of unsalted butter with 1 ½ cups white sugar.

 Boil for 3 minutes while stirring constantly.

 Pour this hot goop over the crackers as evenly as you can. Bake for 12 minutes. 

While this bakes, please scrub your sauce pan in hot soapy water. 

Seriously, if you don’t do this NOW, the sugar will become a permanent part of your pan.

Your choice.

When the timer dings, take out the sheet and spread a full bag of white chocolate chips on top.

Put the sheet back in the oven, with it turned off, for about 4 minutes.

Spread the chocolate, which is now melted, as evenly as you can over the top. 

Put the tray somewhere to cool. (I used the front porch on this cold damp day in May.) When it is cool, crack it into good sized pieces of “CRACK.” 

Here is the end result.  Can something that looks this good, ever be wrong? 

 

While you contemplate this deeply essential ethical dilemma, I head off to bed to snuggle with Gus and rest the cold bones a bit before the new week.

 

 

 

 

 

 

 

Stroke Awareness Month Tawpic for today:     Discuss.  (This Stroke Survivor needs these words today.  Sorry, I will use the first person when I tawk about myself.  I am paying the price today of doing too much and not being present.)

 

May 4^th 2003          

            12.5 mg of Coumadin today.  I have to up the dose of Colase and get my innards working more efficiently, if you know what I mean. I get to Bolus the food into the tube. It is so strange to me to intentionally, on purpose, put nutrients into myself, bypassing the throat and pour this “shake style goop,” directly into a manmade hole in my belly.  A hole that resists healing around a chunk of plastic (a kind of gasket I guess) that leads the tube through skin and fat, a lot less fat  than a few weeks ago, through and into my stomach.  All the internal workings from my mouth to the throat to the esophagus down inside me are dormant.  I imagine them as an abandoned cowboy town in the Wild West, tumbleweeds roll through empty streets.  The wind whirs about picking up dust and taking it through broken windows into an abandoned saloon.  So I crack a can of formula, undo my taped up tube and “Bob’s your uncle.”  I actually make “glug, glug, glug” sounds as I pour it in.  I don’t feel hungry before I pour and I don’t get full afterwards.  Oh well.  It works.  They say I am stabilizing and getting stronger.  And Carole says that there have been a few reactions during my sessions.  Maybe more soon?

My Cuzzin is coming up today.  That makes it a good day, especially true as today is one month since the stroke.  A whole month, and life goes on I guess.  But I worry about the 10 o’clock hour.  I fear what will happen.  My Cuzzin won’t be here til a bit after that time.  But she will come and then I will be ok.  I feel bad for all the driving she has to do to come see me, only to stay for the afternoon.  And then she drives all week for work.  My Cuzzin goes all over the Cape helping people find and keep jobs that are good for them.  I never really realized the importance of what she did before April 4^th. But now I do.  Not everyone can make themselves fit into the specific requirements of a job that they want or are even qualified for.  And what we are able to do for work and want to do, changes over our lifetime.  I see that. We, I mean me, don’t always know best about how to help ourselves.  And sometimes, always lately for me, can’t help ourselves.  Sometimes, all the time for me, I need help from qualified professionals, like my Cuzzin gives to her clients. 

So after her work week is over, she drives two hours each way to hang with me, and she helps me.  I am so grateful that she comes.   My Cuzzin always brings fun things to see and smell.  She has stories of life by the ocean.  She smiles and I laugh.  Sundays pass quicker when My Cuzzin comes and she brings a warm, alive, feeling into my house.  We take Lola for a walk.  And I can and do go a little bit further, without even really trying or thinking about it.  I just follow my Cuzzin and take each step with her.  (Let’s be real.  I haven’t even made it all the way down my street, but I am further along each week.)  It is a good kind of tired when we get back to the house.  And the house is happy with her there.  She plays with Ciro, Zoe and Lola. Their toys get dusted off and end up all over the place.  She talks to my babies and moves around the house, sitting in different chairs in different rooms.  We don’t even hang out in the bedroom while my Cuzzin visits.   And when she leaves, before the traffic gets too bad, the house stays feeling warm and safe. Her laughter and energy lingers.  It’s like the house has life in it and it smiles.  The smile lasts on the house, my 4 leggeds and me, into the new week. For that, I am so grateful. 

 

 

May 4^th, 2016

        We are 4 days into Stroke Awareness Month and things are coming together here.  The reinforcement blue lights have come for the front of the house.   It looks pretty good.  I did add a deep blue house flag.  It has a great blue heron on it.  I saw one at Elm Park on May 1^st so it seemed like a sign to me.  The blue heron is a brave regal symbol for the month of stroke awareness.  And you can’t get a blue, stroke awareness house flag,  Yet. Note to self:  Next year, I need to do the pear tree and other shed with blue lights. 

Inside the house, I have the blue mugs out: the new blue glass tea mug from the outing with Mom and Jason, a blue and white mug with the skyline of Provincetown (a town I love) from a friend I love, and a sponge painted blue mug with a heart on it from Mom.  I have a blue plate out that comes from a powerhouse lady friend of ours who passed away a year ago. On the plate I can put the “Blueberry Thrill” cookies I just made.  I have a standard cookie dough recipe that is tried and true for me.  I added blue “things” to it: chocolate covered blueberries, milk chocolate bars with rice krispies inside, crushed butter wafer cookies and a splash of blueberry soda.  Bizarre set of ingredients on paper, and maybe the dough even looks slightly more greenish than blue, but they work, believe me.         

        I finally finished the blue fleece throws that go on a kitchen chair and the recliner.  Every year on Black Friday, Jason and I trek out to Joann Fabrics.  They have an incredible sale on Fleece that day.  I load up for the year.  Jason picks out a new fleece for a winter blanket, this year was Pokemon.  I got a raccoon and deer covered pattern for a new blanket for Wessyfoo. There are so many incredible, snuggly, soft, and decadent warm fleece patterns. And the price is only one day at year.  This year I also got Blue with White Polka dot fleece.  My hope was that I could make Stroke Scarves, with the FAST letters somehow on the white dots.  I couldn’t figure out whether to embroider, draw or iron on the letters.  And the fleece is so thick to make a scarf.  And as May is Stroke Awareness Month, is fleece the right medium for the message in spring?  So the fleece stayed folded in the study, waiting.

 And then the idea came.  For years, I have been putting two pieces of fleece together, cutting strips the entire way around and knotting the two together to make a tie blanket, very thick and luxurious, and no sewing.  But I had wanted to try a new technique.   Pinterest showed the way. There is a rotary blade cutter that makes holes like a paper hole puncher on fabric as it rolls over the material.  V. Cool, if it works.  I Googled the success of the tool, especially for a techno eejit prone to hurting myself with said tools, and was encouraged that it might work for me.  The item was purchased. I pushed the tool cover to reveal a very sharp blade.  The blade, I kept my fingers away from and rolled it around the edge of the fleece, and then used the holes to crochet a border into. It is a super simple way to use one layer of fleece and use up lots of bits of yarn.  (And my hands fatigue quickly with all the cutting if I do the scissor method.  I totally ignore that tiredness, make the blankets for Christmas and then wonder why I can barely move my fingers for two weeks.) The Blue Polka Dot STROKE fleece, became two throws in the past few days.   Ciro immediately cozied up to the one in the kitchen.  It must look good if he thinks it is good enough for him. 

Outside the house, the blue lights shine.  Inside the house, there are blue blankets, mugs and baked goods. And on me, there is blue too, of course.  The Blue Handbag is out for the month from my collection.  Tim got me this handbag for World Stroke Day a couple of years ago.  I mean, I had to have it, Right?  Right…  And there are blue clothing pieces for all layers, except the undergarments. Yet!  You see my dear friend Jennifer taught me that you must have matching and beyootiful sets of “foundation garments.”  You will feel better throughout the day, about yourself, if your bra and undies match! But I am lacking the former of the two, for now. So clothes are blue, and jewels too. I wear the necklace my Cuzzin gave me that day I got home from the “home.”  It has been reworked a bit over the thirteen years.  I love each reincarnation and the Cuzzin who makes em.

         On my right hand, for the month, I have two sacred blue rings to alternate between. One is the antique Navajo turquoise from Jean Granny.  (Good story about that.)  And the second is an antique, blue glass ring that I found on a wonderful post stroke trip with my college sister/friend.  On a scenic jaunt one day with her and her daughter, we stopped in a small antique shop.  And there, I found this ring.  Nothing special to most, but treasured to me for the company I was with and the good memories it brings when I wear it.  Both are blue, and along with the handbag,   musts for MAY. 

       And then there is Teacher Appreciation Day at Jason’s school to bake something blue for. I have been thinking about my college sister/friend.  One time, long ago, she took me to the Jordan Marsh near her house.  It had the bakery in it.  And they made those famous Blueberry Muffins.  I had heard about them from Mom and Gramma Harriet who got them in Boston when they were young.  I always made/make my Gramma’s recipe for blueberry muffins which comes from an old yankee cookbook called, RAIN, HAIL, and Baked Beans. But when my sister/friend had me try the Jordan Marsh muffin, I knew that someday, I would make it myself.  The store closed up shop years ago, but Yankee Magazine recently published the recipe.  Yippee.  I love thinking of that happy day with my sister/friend and I love trying a new recipe.  And I have to bake with blue “things” this month. I must.

So yesterday, after school, I set about to make the muffins for Jason’s Teacher Appreciation Brunch.  (Of course I doubled the batch to have some for “the mens.” More is better, right?)  The picture with the recipe showed a paper liner for the muffins.  And I thought that it made sense, but didn’t use them.  As the muffins baked, I finished reading the recipe which ended up highly suggesting paper liners as the number of blueberries involved makes the muffins tough to get out of the pan.  Classic Rachel to finish reading the recipe AFTER the food is in the oven. 

As the muffins baked, I prayed for their safe and whole exodus from the pans.  I mean, these are for Jason’s school.  They have to look good.  I let the muffins cool totally in the pan.  That was a suggestion from the recipe.  And then I used a thin metal spatula, which I usually spread frosting on cakes with, to carefully loosen the goodie.  I took my time.  I found myself gripping the spatula tightly, with all my might.  And the result?  Successfully excavation of 12 good looking muffins for the incredible staff at Jason’s school. 

I see something while I am baking the muffins.  And I know that my Jean Granny is with me, in spirit for a reason.  She is there because I look to my hand and see a tissue wadded in the palm, held by thumb.  The other four fingers are free to function.  I can bake, talk, teach, pack lunches, fill the bird feeder, clean the house, decorate and even drive with a tissue snug in my hand.  Jean Granny always had the tissue “at hand.”  Ha Ha on the funny!  Her hands and that tissue were always a comfort to me.  It’s strange the way I remember the hands of people.  Faces fade sometimes, but hands working, strong hands, are clear to me in my mind’s eye.     For Jean Granny, after her stroke and later in years, her nose ran.  I guess she found a way to be prepared, deal with it, compensate for the ooze.  At first it was a linen hankie in her hand.  As an antiques collector and Yankee, she had quite the collection.  There were ones with lace or pretty flowers on them.  But over time, and after the stroke, tissues often appeared.  They were, and are, not nearly as stylish, but they are easier in the hand and gentler on an active nose. 

        I look my own hand and see the tissue.  Two things come to my mind. The first is that I love how she loved me.   One, of countless stories I could tell to illustrate this BIG truth in my life is a follows. Jean Granny always told me this story about myself, over season and years she told the same story.  We used to walk around the yard.  Our route would start from the kitchen, where something fabulous was surely baking, go down the back steps, head out around the garden and perch on her bench for a minute.  Then back out and down past “the dingle” and the old apple tree to the “brick, ” AKA the brook.  The path was tried and true.  I can see it in my mind’s eye.  But this particular day, I was only just walking and talking, twoish I guess to be my age.  We reached the side yard with the sun shining and the daisies and buttercups coming up.  As I teetered, Jean Granny offered to hold my hand and help me walk to the brick.  My response was to grab my own two pudgy hands together and say “No, I hold my own hand.”  I wonder why this story stuck in her mind.  What did she see as its’ magic and meaning?  And why did she repeat it me so many times?  What understanding of myself, or her,  or life was I supposed to get from this moment?

        Countless times she told me and all around us, this story.  Countless times I have told this story. And the meaning changes over time.  Certainly today, I tell this story and feel the love and magic from Jean Granny.  One thing that I have known for my entire life, is that I had the two best Grandmothers in the world.  And they loved me. To feel that love around me 41 years later is a gift I treasure.  What is more important in life?  That feeling is what I run to and strive for and seek every minute of the day. It is what makes me feel human.  It makes my life matter.  And yet, that love is always in me and with me.  It is ever present and available to me, if I slow and see it and be still enough to feel it.  So as I catch sight of the tissue wadded in my hand, I think of that. 

        The second thought that comes to mind is, “yikes.”  I have gone too long, way too long for me, on warp drive and not really, seriously for me, slowed down to be present in my own skin.  I have really seen Jason and Ciro and Tim and Gus and my students and, and, and.  Who is missing from that list? Me.  I haven’t been listening to my body. And as the right half of my body is kinda quiet all the time: no pain, heat or cold sensation as it is, unless I do lots of Reiki, which I haven’t been doing. My body is half on very low volume/ mute all the time.  I mean, I banged my right arm hard the other day as I came around a corner too fast.  I said to myself that it would bruise up nice in a few days.  But I didn’t feel it happen.  And without pain, I didn’t really slow down to check if I was all right, register that it happened or consider slowing down to avoid a future bruise.

And the left side of my face has the spastic muscles which make breathing and talking and sleeping tough at times.  If I am stressed about work, check, or it has been almost 6 month since my last Botox injection, check, or if I am worried about the big bill I get from my insurance on top of the money I already pay to buy the Botox dose and the copay for the visit to my neurologist to get it injected, check.  If I am angry at the insurance company for setting the amount I need to pay so high and the amount they cover so low for the Botox because I am an outlier in needing this treatment within the population and yet it is so very very helpful to me and I don’t make a huge income as a public servant anyway, check, check, CHECK, CHECK!  If all this is whirring inside me, I ignore my stroke survivor body and soul.

        I don’t want to miss out on anymore of my days.  I have too many things that I get to do, can do and dream of doing every day.  I get “tornadic,” is that a word?, in my actions.  I whirl physically and spiritually.  “I move fast,” as Gramma Harriet used to say, about herself as she filled her days with activities and making things.

 But when I don’t listen, my body talks louder and louder until I have to listen.   My body screams at me and then slams me on my butt.  My face locks up.  I can’t fully open my mouth wide.  I get an ongoing headache on the left side of my face and skull. My nose runs more and I find myself with a tissue 24/7.  My tongue doesn’t work as fast and so my speech slows and slurs a bit.  My bones ache.  The cold feeling gets into the right side until the bones feel like they are teeth, chattering in the Arctic. I get even more klutzy and clumsy and bash my body into any and most available walls as I whirl.  On and on it goes.  And check, check, check on all of the above.  So last night I got body slammed by my own body! And today I am home sick from school.  I am down for the count. I do rebound quickly IF I slow down, and do the things that they taught me: rest, sleep, warm compresses, and massage my face like they taught me in PT/OT and Speech years ago. Today this teacher is getting a lesson, at home.

The Golden Girls are on TV and Gus is on the bed as I write this.  Tim just got back from taking Jason to school, with the muffins.  Jason went into school alone.  He didn’t want to walk with Dad on his mission to drop off the treat for the staff.  Jason gave his hugs at home, but at school, he goes in alone.  I admire his independence.  I feel bad for his, slightly rejected and dissed, Dad.  I am glad to be in bed, cozy and warming with a cup of tea, in a Blue mug.