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

Todays’ Topic:    Tawk amongst yourselves.

  

April 30^th and May 1^st 2003

4-30-03 I see Carole from 11am to 12 noon at my hospital. (The session goes so fast.  I am a good patient.  I open wide for the swab and try to feel the cold.  I try to feel the swab.) Coumadin is at 12.5mg Feed 180/ 9hrs

5-1-03    VNA comes, Karri.  4pm to 5pm Carole. (It is late for my appointment.  Carole and so many are heading home soon for the weekend with family and baseball games and maybe a first barbecue. I  am on the ball today.  I open wide for the swab and can get to my suction before she reloads swabs for the next round.  I got it going on.  I try really hard to have something inside me respond, react to the cold swab.  I visualize it. Maybe next week.) Coumadin is at 12.5 mg. Feed 200cc/8 hours

I see Dr. K, my neurologist next week. (I will not ask him why I had a stroke, again.  I will not ask him if I am going to have another stroke, again.  I will not ask him how much I will be able to recover, this time.  I will only ask about the coldness.   This coldness on my right side is savage.  IT feels like ice, only tight and painful ice. It feels like the arm will just crack right off like a broken icicle.   I mean, I feel like ice on the right side.  My right side hurts.  That’s how I should tell Dr. K.  In bed, I have Lola lie on my right side and I imagine her warmth becoming my warmth.  Eventually, if she stays near, I snooze and don’t think of the cold.

I put a call in about driving again.  They think I am more stable, so it will be safe.  When I hear back from the powers that be, I am going to visit school.  I am going to visit when I can drive there on my own.  At least I will walk in under my own steam from the driver’s side of my own car.  They won’t know that, I know.  But I will know and it is something. Everyone says that I am missed at school.  My kids are so young.  They sent me beyootiful cards that all say “get well.”  But some of my school friends say, and I believe, that the kids really need to see me, for real.  I don’t know what they will think of me.  I don’t know how it will help.   But I will go to them because, because… I am unsure how to finish that sentence.  I guess I will go because they asked me to. 

 My suction is sort of disguised in the backpack bag thing.  I can go into the teacher’s bathroom on the pod, just outside the back door of the classroom, before I go in the room.  I can stay near the back door, where there is a light out above.  In the shadows, I can say hi for a minute.  I don’t have to sit down.  I won’t stay long and I can head to the bathroom to suction when I need.  I also need tissues.  I hope I don’t drool in front of them.  But that is only a plan right now.  I have to get the legit ok to drive.

Beautiful cards come regularly from everyone.  I save them for the evening.  I get a lot of love in the mail every day.

Bills come regularly from everyone.  I open them right away. Today is a bill for speech.   Each session with Carole costs how much??????????  $1,843.00    I am sure Carole doesn’t get paid that.  My bill totals $28,900.75 for speech so far.  But I only owe $140.  But I can’t swallow.

 

April 30^th and May 1^st 2016.

        You wish you had smell o’ vision and taste o’ vision here the other evening.  The school day had been long.  The week had been long.  And I was preoccupied, no, be honest worried for someone I know.  I hate that helpless feeling I get when someone I care for is suffering.  Life is not being good to him and I cannot fix it.

 I can hold his hand.  I can look into his eyes.  I can tell him that I KNOW what he is going through.  I KNOW it is hard and it hurts.  I can tell him that I am sorry it hurts so much.  And I can try each time I see him, to allow him to and make space and opportunity for him, to have peace and joy, if only for a moment.  And I can pray.  I pray to accept whatever the day brings me, and keep him safe.

         I did that.  I don’t know how or why I was able to  reach out to him and connect.  I think, no, I know my angels were involved. Thank you.  But the feelings sit and slosh inside me like the sludge in a clogged drain, nowhere to go.  And so I bake.  The day was long, the sun was setting and I bake.  I spy the bananas, just right ripenesswise and too many for breakfast tomorrow.

 I just saw a recipe that would be perfect.   Yahhhhh, like I don’t spend the bulk of my time googling foods… I saw a recipe for Chocolate Chip Banana Bread with Peanut Butter Frosting.   And I bake.  The house smells sweet.  I imagine the sweetness blessing all for the night.  I smile and head to bed.  For the weekend ahead is busy. 

        Jason has his second baseball game.  He is incredible.  The amount of focus he has for the entire game, on the ball in play, on all his teammates and cheering for them, on a player holding at second base that he can chat with, on the location of HIS batting helmet at all times, what his coaches say to him about his “good run to first base,” and his focus on where his fans are in the stands to give a wink to, all this he does.   Proud Momma am I.  And after the game, he downs the water and granola bar I brought for him, and is chatty and smiley and all around ready to carry on with the day.  Phew, much better today.  Jason carries on with the good vibrations all afternoon.  He enjoys the sun and tosses the basketball around with his Dad.  I hear the giggles from both, and I smile.  In the backyard, I make the weekly collection of Gus’ “donations,” for the week.  Then I walk around the yard and water a bit, all the growing things.  The bleeding heart is almost blooming.  It is a new one this spring.  (The contractor from he** last summer trampled my ancient, beloved bleeding heart.  I am not nearly as bitter as I was.)  This bleeding heart is pure white.  I had forgotten it was a change from the old one.  It is beautiful and delicate, but super strong too.  Love it.

        After the yard and Gus are sorted, I tackle the BLUE lights.  Tomorrow is May first. May is Stroke Awareness Month. And as I decorate the house for every season and holiday, of course I gotta decorate for STROKE month.  Our color is blue, as I have told you.  Yes, stroke is a part of heart disease and the American Heart Association.  Yes, the American Heart and Stroke Association are one big organization.  Yes, the color of heart disease is red.

But we are a “Brain Attack.” The Stroke Association makes wonderful Stroke Strings, Blue Stroke strings for stroke awareness.   Power to End stroke has a blue logo.  So Go Blue for STROKE in May, I say.  And I have been collecting blue lights for the decoration. After Christmas, the blue winter lights are on deep mark down and I snatch them up for this month and World Stroke Day, in October.  So today, as Jason and Tim play ball, I excavate the blue from the attic.  I hang up what I have, and get Tim’s help with some of it.  But it is not enough.  At sunset, Tim goes outside with me and he agrees, the house needs MORE BLUE.  Have no fear, additional blue will arrive at the house on May 2^nd and be hung right away. Then I will share.

 My theory is this:  Most people are aware of the pink ribbon for breast cancer awareness.  The cause has done a great job “branding” the color pink and raising awareness, and money. Most people are aware of the red ribbon for heart disease. Most people recognize the red dress symbol to Go Red for women’s heart health is February.  And many public buildings, like the statehouse in Connecticut for example, actually GO RED with lights on Go RED day in February.  Buildings with their lights and people with their fashions, go RED all over the country, for that day.  It raises awareness. I want to do that with BLUE, in MAY, for STROKE. It’s that simple.

One way that awareness is raised for the AHA and ASA, is through Heart Walks.  All over the country, at different times of the year, there are walks in our communities that raise money and awareness for Heart Disease and Stroke.  And, all the money raised by the event, stays in our community and helps with research, advocacy, awareness, prevention and treatment.  The event is local, and those involved are local.  It is a great way to become “a part of” and not be “isolated from.”

My journey with the CentralMAHeartWalk.org began in 2003. I reached out over the internet to the AHA in the fall, and the Boston chapter let me know about my local heart walk.  That year, the walk was in the fall.  It was at Institute Park, which was right next door to where I had grown up.  I had played in that park most days.  And the Heart Walk was there.  I did not sign up ahead of time. I did not join a team.  I did not raise money.  I just showed up, with Lola.  It was fall and everyone was back at school, busy with fall and family.  But we were not.

 I registered for the walk, as a Stroke Survivor.  I remember how strange it was to identify myself as such.  The people at the booth were so friendly, and seemed curious about me and my story.  But I was not ready to do more than just check the box on the form. So we walked, just a half mile that year.  But we did it.  And although we arrived alone and knew no one there, we did not walk alone.  Our former mayor was there.  I forget why.  And as Lola and I started to walk, he joined us.  And we chatted.  I told him that I recently had a stroke.  I knew who he was.  I told him that I had been a teacher in the city, before the stroke. He listened to me. He walked with us.  It was sunny that day.  And I remember that I was not cold for that half mile. 

It was a start for me.  And although I did not continue much with the walk or the AHA/ASA for a couple of years, when I was ready, I came back. And I got strong.  I got involved.  And I got better. I started a heart walk team with the school nurse at my former school.  We raised money by collecting spare change and we raffled off the big cookies.  We walked together and were joined by other staff.  The walk was in the May now and that felt right.  After all, it is Stroke Month.  The walk was downtown.  We walked through the city. We walked by my hospital.  (I walked by my hospital, did not go in, but talked about my time there and cheered for them for saving me. A very healing journey.) I walked with a team of coworkers and friends and their families.  And I saw people on the walk I knew, from the city, from church, from City Hall.  Then they walk moved down near the lake.  It is so pretty there.  That is where it is this year.

Every year I am a part of the Red Hat wave.  At the walk, survivors of heart disease are given a red hat to wear for the walk. I don mine with pride.  I look around and see many people like me walking, all ages, survivors.  Before the walk begins, the RED Hats are asked to stand together for a group picture.  And when they tell us to, we all wave our hats above our heads, together.  And people cheer.  It feels really good to be together.  I love that part. 

Then two years ago, when I signed in at the survivor’s tent,    the hats changed.  There were red hats for heart disease survivors and now white hats for Stroke survivors.  Hmm, I thought, recognition that we are different from heart disease and this is our month.  I like it.  So I put on my white hat with pride.  And I admit, I strutted a bit back outside over to Tim and Jason.  And later, I cried a bit.  (I would cry more, but the spastic muscles in my face get all fired up when I cry.  I can’t breathe at all.  The left side of my face totally locks up for several minutes and snot abounds.  Not pretty.  As it is hard enough to walk a couple of miles, with my wonky breathing, it would be impossible if I were to have a good cry.)     But I want to have a really good cry.  And here is the reason:  for two years, I am the only WHITE HAT I see.  RED HATS abound.  Their numbers are strong.  There are all ages, shapes and sizes wearing the Red Hat proud. 

But I am alone in my White Hat. I cannot see one, even one other White Hat, like me.

You see MOST people with Stroke are not as lucky as I am.  They are not strong enough to walk.

Or they can’t get out of bed.

 Or they don’t know about the walk. 

Or they don’t see themselves as able to get involved with the AHA/ASA as a survivor.

 Or they don’t have any money to share with the event as a survivor. 

Or they only identify themselves as stroke victims.

 

Or they did NOT SURVIVE their STROKE.

  It’s that simple.  It’s that sad. 

But this is a new year and we will see what we see on May 7^th at the 2016 Central MA Heart Walk with Columbus Park Has Heart.  http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1141392&lis=1&kntae1141392=23756BB7FCB84A0FAD357180009BAF25&team=6641800&tlteam=6478459

 

April 28^th 2003

I get to go back to my hospital today.   But first I have to go to my Primary Care Doctor.  She wants to check on my progress.  Dr. S came to see me in the ICU.  She came to see me on the neuro floor of my hospital. But now, I have to go back to where I had my stroke 24 days ago.  I have to walk in those doors and go in one of those rooms.  Will I walk out this time?  Mom drives me there. I walk in and the nurses have a “happy but terrified to see me” look on their faces. I guess it was a bit out of the usual routine to have a 30 year old Caucasian healthy female patient stroke out in the office. I get it.  I am a rare case.

But, Ugh.  Everyone is looking at me and whispering.  I have my suction machine, but not the Kangaroo.  I am going to start Bolus feeding soon, so I am taking a break.  (Bolus means that I do not use the Kangaroo, I put the formula straight into my tube in my directly. Some freedom in that I suppose.) So the nurse checks me into a room to see my doctor, but not My Room, where it happened.  When she is done taking my vitals, she goes to leave and shut the door. “NO,” I say loudly.  I didn’t think to say it. I don’t know where the voice came from. It just came out.  “NO, don’t shut the door.  I can’t have it shut. Never again.”  I repeat. And inside my head now I am crying, I need to hear the voices in the hallway.  I need you to be able to hear me.  What if this time you don’t come fast enough?  What system will shut down on me next?  Even though, my mom was right there with me and I would not be alone in the room. Even though, the nurses probably have me down as a frequently checked on patient.  Even though, I am with a building of 50 or so medical professionals. Even though, the doctors are telling me that I am healing today.  Even though.  Even though.

During the appointment my Doctor talked to me about how I was doing, asking me how I was feeling.  “Not much,” was my immediate answer.  Stroke for me was not painful. Stroke was Silence.  My whole body is deathly quiet.  And I don’t trust it anymore.  So the silence covers fear.  She said that the fear was normal.  I was doing really well, she said.  I was young and healthy, she said.  And I had got care FAST, she said.  She “suggested,” translation, “you are going to make an appointment with” a Medical Social Worker.  I have no idea what they could say or do.  (The voices inside my head scream: What can we talk about?  Have you been in my shoes?  You are older than I am, but you came to work today and after you see me as a client, you can go eat a big hamburger, go to the gym and drive home. What’s the point? ) But what I say is that I will set the appointment and show up. (And in the car ride downtown to my hospital, a new mantra has awoken in my head.  Why the he** did you save me Doctor S.?  Why didn’t you let me die? And I know this is a horrible thought.  And I don’t want to upset my Mom more. So I just listen to the radio and look out the window.)

It is great to see Carole at my hospital.  She works out of the PT suite.  The PT room is huge and so sunny with a whole wall of windows.  People are working and talking and smiling and moving.  The space is alive.  And off this huge room, there is a hallway.  Carole’s room is the second on the left.  There is a nice table and chairs and the lighting is nice and Carole is there.  There is something about her, here, that gives me Hope.  Her warmth and smile, her skill and confidence, her touch, all lift me up.  I believe that she believes I will swallow again.  And in that belief, I have another new direction and purpose for living.  I take care of my babies and I WILL swallow.

The big bowl is full of swab packets and ICE.  (This photo was taken inside my freezer on 4/28/16.  Yup, I have saved two packets of swabs for 13 years.  I brought them to my new house when I moved.  I never want to forget where I came from.)

 

 

April 28^th 2016,

The Monkey Balls were a big hit with my students, in case you were wondering.  That sweet treat is a gauranteed laugh and YUMMY.  My kids worked so hard.  I am proud of them. I wonder often if when I was in 6^th grade, I could have worked so hard on a standardized test.  I am definitely not convinced that I would.  I am in awe of what this generation of kids does.

The test is about two hours.  For the remainder of testing days, I try to have engaging lessons that are something new and fun.  For two days we worked on 6 Word Stories.  Ernest Hemingway wrote, “For Sale: baby shoes, never worn.” Hmmmmmmmmmmmmm.  There are an infinite number of interpretations or tales that come out those 6 words.  There are articles, magazines and blogs dedicated to the publication of 6 word stories.  I posed this story to them.  They had a variety of interpretations. Good.  I wanted them to write their own: 3 stories, using only 6 words.  The first story is about yourself.  The second story is about 7^th grade and the third story is a free choice tale. All stories must be 6 word stories. But just sending them off to write by themselves, with that small intro, after tirelessly taking the test, not gonna happen.  So I have a group write.  One of my gems gets up and scribes on the board all the words the students share about one topic: Mrs. Henry.  I am shocked at the positive words they use: baker, sweet, chocolate, silly, brave, courageous, and devilish.  All pretty good sounding labels to me.  After listing the words, they had to write a 6 word story using some of the brainstormed words.  One story was:  Mrs. Henry: sweet baker or devil?  I’ll take it.

At school and at home, we are busy with the Heart Walk, which has crept up and is now only a week and a half away.  I have now heard from two sources that I was seen in an ad about the Heart walk on TV.  Yup, it’s true. Last year at the walk someone with a video camera and a microphone asked a bunch of us, “Why do you walk?”  Here is what I said used in their PSA for the Central MA Heart Walk this year.  https://www.youtube.com/watch?v=besOSc-7yu4

I captain a team called Columbus Park Has Heart.  We raise money at school by collected spare change at lunches from the kids.  (Last year we raised $600. Awesome. Our goal this year is $1000.) Each donation gets your name on a raffle ticket.  When we are done fundraising we raffle off BIG SWEET Henry Sugarhouse Cookies.  The more money you bring the better your chance to win. “SWEET!”

This year I added a bumper sticker to our fundraising.  I have not found a STROKE identified bumper sticker to my liking for years.  It has to be Blue, as that is color of Stroke Awareness.  And it has to say F.A.S.T. as that is the campaign we are pushing to raise awareness to most and prevent strokes for most.  I have been unsuccessful in finding one that fit those requirements, so this year Tim and I designed our own and had some made.   I am selling ‘em for $5 each and all proceeds go to our heart walk team.  If you want one and are local, let me know and I can get one to ya.  I want to sell them all during MAY: Stroke Awareness Month. So here is a shameless plug for my team and a great cause. http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1141392&lis=1&kntae1141392=23756BB7FCB84A0FAD357180009BAF25&team=6641800&tlteam=6478459

This link goes right to our team page.

Please help if ya can.  I am so honored to be a part of such a great event.  Over the weekend, I’ll tell you how I got involved in the Central MA Heart Walk. (My first time was 2003!)  But right now, my Gus God Dog, Jason and I are due for an evening stroll, especially after a yummy supper of grilled chicken, pesto from our own basil, and lemon ricotta ravioli.   Oh  my!  

 

,.

 

I am “friends” on social media with many stroke related groups.  In the past 5 or so years, their inspirational posts have been a great daily boost to my days.  The encouragement is always needed.  The positivity is affirming.  The posts remind me that I am not alone.  I am part of a community.  I matter.  I make a difference.  So today I want to start a new part of each blog entry. I am going to share one of the AHA/ASA posts with you.  Here is the first one. Right now I am picturing that old SNL sketch “Coffee Talk.”  Here is a “topic.” “Discuss.”    

My thoughts on the post: I immediately zoned into the word “unplug.”  I was literally plugged into machines for survival.  And now I choose to be plugged in to technology.  And so often, my answer to a problem with the techno world, is to unplug, count 10 and then it actually does just work again.  And me, so often I need to unplug my head, (get my head out of my backside) and just be in the moment.  Unplugging is a reset for me.  But back then I had to trust the machines worked best for me, plugged in.

 

April 26^th 2003

            I have been home, from the “home” for a week now.  And it is M.O.T.S..  My favorite Boston weatherman of all times, Dick Albert, coined this term. (At least I give him credit for it.)   It stands for More Of The Same.  And that is how it goes for me.  I am still getting the visiting nurses for all therapies.  I really haven’t left the house, except to take care of my Lola’s duties.  On Monday, I will head back to my hospital to see Carole.  Thank Goodness.  I cannot drive yet, maybe in a week.  So Mom offered to drive me.  Thank Goodness.  I know it is a pain in the arse to schlep me around, but I know my hospital will help me. 

            I have zilch energy combined with massive terrors.  Great combination as I look like a pile of day old pudding on the outside, but feel like a tornadic volcano of fear on the inside.  I take care of my babies and my Kangaroo responsibilities. I try not to look in the mirror at a face I don’t recognize with half of it looking like a pancake slipping down off the plate and the other half bloated, ghostly pale, but otherwise relatively normal. I try not to talk to much and hear a voice as slow as a snail where just a few weeks ago I was a Speed Talker, that slurs and drools.  I doze and nap with the TV in the bedroom.  I check my pupils.  (I am looking for different reactivity and sizes in the pupils. That is an indicator of the next stroke. I check a lot. It is sinking into me that I HAD A STROKE. ME! )  

            My one break in this routine was changing me sheets this morning.  I figured that out of the 168 hours in the past week, I had probably spent about 150 hours in that bed.  So I thought a change of sheets was in order.   I disconnected from the Kangaroo so I could maneuver better.  I was near my suction.  And I can walk around three sides of the bed, so I could easily do the corners.  I thought it was going to be a cinch. To quote Casablanca, “what right do I have to think.”  30 minutes.  It took half an hour to make the bed!  I am 30 years old and have been making my bed since I was in the single digits, regularly.  And today it took 30 bloody minutes and afterwards, I was beyond pooped.  Really?  I was saved for this?

 

April 26^th 2016

        April vacation is over. “My unplugged time” was invaluable as I can be better for my students after a break.  And I need to be better, as The Testing marathon begins today.  My students are very good testers.  They are able to buckle down, sit super quiet and give their best for the testing periods.  I am so surprised that the vast majority of my students really take this testing seriously.  (On a regular spring school day, 6^th graders are cuckoo bananas, and rightly hormonally so.)  But these students rise to the occasion and I do my part to help them succeed.  What do I do?  Bake, of course and push sugar. I bake Monkey Ball Bread every year for the Testing breakfast.  Years ago, my rockin mentor teacher who showed me the ropes of teaching 6^th grade and was rated “V. Cool” by all, made a school wide cookbook as a fundraiser.  Students and staff submitted recipes.  I bought the cookbook and was introduced to Monkey Balls.  Yup, that was the name she gave the recipe. I love food. I love making sweets, eating sweets and sharing sweets.  I love that rockin mentor.  I love giggling.  This dish combines all the above.  It is definitely good medicine.

  And when I followed suit with a cookbook, I made sure the recipe lived on.  Since 2001,  I have made Monkey Balls for all in countless varieties, savory or sweet, fruity or chocolatey. (You can Google: Monkey Bread for hundreds of varieties. There is even Gorilla Bread out there. Don’t even smile over that name.)

 The truth is,  I am still always nervous around people, especially people who don’t know my story.  I worry that everyone thinks I am drunk and stupid cuz I still talk slow at times.  I never know how to make small talk.  I worry that you think I am a super freak show. And yet I want, NO need, to be in relationship and community with people.  That is how I am a happy human. Being with folks (2 or 4 legged) is how Rachel knows she is alive and human!  I have to find a way to stick my neck out and be social, darn it!   But it terrifies me when I get strange looks from people or if they whisper and stare.  I am way too sensitive, I know. I am working on that too.

 And so I lead with my goodies, my baked goodies that is.  I find out what you definitely like or decide what I think you might like.  And I bake.  And I offer the goodie with all my heart.  And I can respond with ease to the look on your face.  I am happiest when you even lap up the crumbs. I do get resentments when there are leftovers. I am working on that too.  I don’t need necessarily to talk to you.  I just consistently show up with my basket of goodies.  You smile when you see the bag, knowing that something yummy for you is inside.  It is so simple.  I am happy.  You are happy.

What better way to bless the student warriors as they face The TEST  than with a warm treat that makes ‘em all giggle the pre-testing jitters right away.   Here is the recipe. 

And here are today’s Monkey Balls.   The smell in my kitchen is off the hook, yummy.  There is no better way for me to get ready for Testing than with this tried and true Henry Sugarhouse tradition. We’ll see how my students this year react to the delicacy.  We’ll see how Tim and Jason react when I tell them there isn’t a single Monkey Ball for them to eat.  We’ll see what the day brings. 

       

 

 

 

           

April 23^rd 2003

Visiting Nurses are wonderful.  They come every weekday.  They do blood pressure checks, temperature, pulse, and some of the physical or speech therapy too.  One lady came and tried to do the DPNS.  I had the swabs and she used them.  She wasn’t trained in the technique.  So I don’t think there was any help for my swallow, but I didn’t let on that I knew.  She did her best.  She was here.  She smiled at me.  And that did help.

The nurses check the schedule I make for the day : 6am- feeding, 830am- crush and add Levothyroxine to the fluids in pump, 1130am- change formula, 230pm- formula, 530pm add Coumadin (12.5mg which I used the pill cutter to make from my bottle of 5 mg light orange pills and the 1 mg. pink pills.  Today that is 2 and one half of the light orange pills.  Or two light orange and 2 and a half pink pills.  The adding of the fractions is something I am very good at.  I take my time and figure it twice.  But it is good to have the nurses check. ) crushed into fluid, and 900pm crush the Paxil and Colase and add to tube.  The Coumadin thins the blood and the last INR said what the next dose is.  The Paxil is supposed to help me stay calm and sleep and not worry. (Best of British Luck on the Magic Medicine.)  And the Colase helps my innards do their job AKA The Poop Pill.  I fill out a daily schedule and keep it near me at all times.  The nurses check it for me.

They help me with the Kangaroo Pet 2100 Enteral Feeding Pump. (Yup, my robotic feeding gadget is sweetly referred to as a kangaroo.  How familiar.)   The pump goes into the frame.  The container, filled with formula (aka my food) goes onto frame.  Prime the line.  Press tubing into channel, being aware of roller clamp.  Install pump.  Close loading arm.  (Then I can thread the pump through carrying case and put entire unit into case, if I am going to leave the bedroom and maybe go outside while feeding.  I am not.) The final step is to connect the pump to my feeding tube.  It’s kind of like the space shuttle docking at the space station.  The speed of the pump for the formula is still slow and needs me to be hooked up pretty much round the clock.  I am getting the procedure pretty much down, but I love the nurses helping.  With their hands working on the pump, they chat about the system in a friendly way.  There is no shame or pity in their work with me.  They talk to me too, and touch me to for all the various tests, evaluations, etc.  When the Visiting Nurses are here, I am working with them in the moment to make my day and me better.  I connect with them and my machines for a few moments of safe healing.

I get up and move around for those 6 scheduled times a day.  I get up to take care of Lola, Ciro and Zoebug.  Lola goes out into the yard for each of my 6 times.   That is 6 sets of stairs/day.  I don’t even think about it now.  It is the routine.  Down 6 steps, a landing turn, down 7 steps, back porch, down three to the yard, and the reverse on way back up.  I don’t put the leash on Lola as the yard is fenced.  I disconnect from Kangaroo and leave the suction upstairs.  I have a ball of tissues in one hand and a “cookie” for Lola in the other.  The cookie secures her speedy return to me after her business is complete. But after each time outside with Lola, I need the couple hours of rest.  I zone out with the TV mostly, cuddle with my babies and wait for the next appointment on my schedule of food, fluid or nurse.  That was yesterday.  This is today. And now that the schedule for tomorrow is written and Lola has had her last cookie, to bed for the night we go.   All in the Family is on tonight, 4 episodes and later, there are a couple hours of Curling on.

 

 

 

April 23^rd 2016

The end of April vacation is always ludicrously busy, even if there is not tons to do.  I have had a taste of rest and relaxing, but know that the final 6 weeks of school is there, jammed packed of testing, activities, projects, and graduation.  So my head is running a mile a minute.  I have a hard time staying in the moment, being present when the rabid bats are up in my bat cave AKA chaotic thoughts in my head.

I get up school early, even though it is vacation.  Ciro is needing some food and Rondo needs the loving.  Gus snores.  3 mugs of water, “down the hatch,” as Gramma Harriet said.  The coffee is perking away.  All is right with the world.  Before the coffee is ready, I go to my new, well practiced, default setting.   When I feel like this, I bake, even more than usual.  “Keep calm and bake on,” says one of my rubber spatulas.

Gramma Harriet, AKA my Cape Cod Gramma, used to bake for everyone in her life, at holidays and just everydays.  At Christmas, the firefighters over the back fence got a coffeecake, the dentist, doctors, and nurses got cookies, the neighbors got brownies, and the gals at the bank got Lemon Poppyseed Cake.  That is what I will bake now.  We get to see some friends after Jason’s first baseball game of the season today.  The cake is just the ticket for our friends.  (When I get home I need to wrap up fixung two blueberry pies too.)

Lemon Poppy Cake is in the oven, bright yellow zest making the sun shine on this rainy morning. I get the first cup of coffee to myself, and then the baking sounds and smells bring “the mens.” Breakfast is more of the Breakfast Burritos.  I made 6 yesterday, because we had tortillas going to waste, filled with scrambled eggs, bacon, cheese and leftover potato-cauliflower mash.  Three were eaten yesterday morning and 3 are today popped from freezer to microwave.  That’s what the recipe said, a couple minutes in the nucolator to thaw and warm them from frozen.  It took a couple, few minutes, but it worked.  They were yum.

After breakfast, there is a few minutes to write and then off to the ball game, up the hill near the airport we go.  The sun is supposed to win out, but hasn’t yet.  I am grateful for the bright yellow team shirts and hats that Coach gives out. They positively glow.  Jason picks number 22 this year.  His first time running the bases, Coach calls him out for great running. He hits well each time at bat.  He gets to catch, equipment and all, catching and returning the missed balls to the Coach/pitcher. As catcher and as first baseman, he catches and tags out players.  In the dugout, he cheers on his teammates.  Impressive outing!  Momma is proud, and cold, and hungry when the game ends.  We head home, maybe we should go out to lunch?  Not so fast Proud Momma.  For whatever reason, or for no reason other than he is 7, Jason has an equally impressive meltdown in the car.

So I pull up my big girl panties, remain calm(ish) and make lunch at home.  The ball player showers and hydrates. And once the 6 hot dogs have been divided between 4 eaters, things look a bit better.  (Gus is one of the 4.  When we first adopted him, hot dogs were the only human food he ate.  Imagine?  How we have corrupted, I mean spoiled, him.  So Gus, of course had a hot dog too.) The ball player heads back to his room after lunch to do the time for the crime.  I head back to Bake on!  And Tim works on a customer’s order.

Apple pies are a Henry Sugarhouse favorite, blue ribbon winner, tried and true.  But the request today is for blueberry pie, so that is in the oven.  A friend of Tim’s helped us out at the last minute, big time.  Of course I offer a “thank you baked goodie.”   Yesterday I made a double batch of Sugarhouse Pie Crust and put it in the fridge to chill.  After lunch the pies went together.  And of course if you make one pie to give away, you must have one to sample here. With 5 minutes left on the timer for our pie, you can see a well floured sweatshirt on me while I write, sitting with Ciro who purrs beside me.

Here is what I did for the Pie:

1. Crust:  Put 1 2/3 cups King Arthur Flour, 1 TBSP sugar, ½ tsp. salt and ¼ tsp. cinnamon the bowl of the mixer and combine.  Add 1 stick of unsalted butter, cold and cut into cubes.  Add 2 Tbsp. Crisco.  Combine well on low speed until butter is well mixed in.  Slowly add ¼ cup ice cold water until the dough STARTS to ball.  Stop and make into a ball and put it in the fridge.  (I doubled this to make dough for two pies)
2. Filling: Mix ½ cup King Arthur flour with ½ tsp. cinnamon in a large bowl.  Add 4-5 cups of frozen blueberries and toss.  Add ¾ cup sugar to berries and toss.
3. Divide pie crust ball in half.  Roll out one half to line a 9 inch pie pan.  Put blueberries into the crust in pan.  Add the juice of ½ of a lemon over berries.  Dot with 1 tablespoon of butter.  Roll out the other half of the dough and put on top of the berries.  Seal the pie shut.  Give the pie openings to vent. (Don’t we all need openings to vent now and again?)
4. Bake in a 425 degree oven for 35- 45 minutes.

 

 

The timer dings.  Now We have to have a chat about what happened with our young lad and then head out with the Lemon Poppy Cake and my crochet, to see our friends.  Thank God we have pie to go with our chat.  A spoonful of sugar sure helps the medicine go down.

 

April 20^th 2003,

Easter Sunday and I am home.  Ciro, Zoe and Lola have varying degrees of affection for me punctuated by periods of hostile, back-turned-to-me ignoring.  This has been the way to treat pet mommas for as long as two leggeds have left the 4 leggeds home alone for the day.  And in their case, they were without me for 17 days.  But now, I am more sensitive and take the cold shoulder personally.  It’s embarrassing to me how much I crave their cuddles and loving, attention and touch. I am so different today. Fortunately, all three aren’t cool towards me at once and the whole drama doesn’t last more than 24 hours.  Taking care of the 3 of them and running my own mechanics of daily care, that is my life this Easter.  I had two big events in my homecoming that exemplified the new me.

1. I was so excited to be home.  The sun was out.  It felt a bit like spring.  So I “ran” around the house and threw open all the windows.  I swept the wood floors. (I guess I did not sit down and plug into the food drip immediately as I was supposed to. Oops.)  And then I set out to water all the plants.  I have 20 or so plants, from before and with all the new ones that were gifts for my stroke recuperation. I had plants everywhere.  My mom was there, urging me to sit a bit, rest, save some of this work til tomorrow.  She tried valiantly to get me to slow down, but no luck.  I had been a pretty compliant patient in the hospital.  But now I was being a pretty bull headed daughter at home.  Sorry Mom.  So the plants were everywhere, as I said.  One new plant had been set down on top of the TV in the living room when we were unloading me from the home.  There it was.  And I watered it.  I watered it real well.  A very liberal dousing it got, so did the TV.  TV’s don’t like to be watered, FYI.  (Although, now with flat screens, you couldn’t set a potted plant on top of a TV, however briefly.)  The TV made a not very TVlike sound and then died.  I tried to use the hair dryer on it.  Nope.  No luck.  No resurrection for my TV.  I told my Cuzzin about it.  She laughed and assured me that we would find a store open when she came up for Easter and we could get me a new one.
2. The second big event of my homecoming was the shower.  I had quite come to rely on my showers at the home for comfort, even in my short stay there.  I was safe and independent in the shower.  I felt warm and soothed in the shower.  I thought of showering, self-care, as a way to help myself.  So of course, I wanted a shower at home.  It was Saturday evening.  Lola was all set for the nite with her trip outside and bedtime cookies laid on.  Proper cookies now for my angel.  It was wonderful to give them to her.  I had bought special treats for her on my way home from “the home.”        Mom had taken me to the Pharmacy to get medicine, local pet supply for food and treats for the 4 leggeds, then the medical supply store for the pillow, and the specialty food store to get things for Easter Sunday. What did I need food for?  Well, Mom and Deb were going to come to my house for a visit on Easter.  The wonderful local specialty food store had been there forever.  Mom helped me get wonderful sandwich fixings and fruit for Sunday. It was simple, easy, no fuss and going to make a nice meal for Easter.  (I was so uncomfortable standing at the counter, ordering the foods.  It was obvious to me that I was sick.  I felt that everyone there was staring at me and wondering I was out, when I should be in a hospital, away from everyone else. I was so self involved, I quite forgot that Mom and Deb would need more than what I had for myself. I had my lovely food drip.)  Fortunately, all these shoppes were nearby and with Mom’s help, we got all the bits and bobs home.

All my 4 leggeds were sorted for the night and Mom had helped me organize and find spots for all my new necessities.  I had starting keeping a calendar of times and amounts for all my machines.  I needed that to have a place.  The kitchen counter was the spot to lay all that stuff out.  I mean, what was I going to use it for?  Mom went home to her house, and her kitty, to have supper, rest and relax.   I had reassured her that I was all set and gonna be fine until morning, and wasn’t she exhausted and needing to get to her nest.

And so when I was there alone and it was getting dark outside, then I decide I want to take a shower.  But I was terrified.  I did not feel safe.  There was no nice health aide to check on me and make sure I was ok.  Uh-oh.  I thought and thought.  I could cover the PEG site with the same stuff we used at “the home.”  And, to be extra safe, I would add a layer of Saran Wrap over the top.  Overkill, but it reassured me that I would not take on water in the shower and sink like a stone, and be found drowned in the a.m. by family there for Easter.  I tried out getting my leg over and into the tub for the shower.  I did it slowly and could hold the sink and the window sill in turn.  That felt ok.  My machines were all set in the bedroom for right after I got out of the tub.  I could collapse into bed and rest to get some energy back.  Lola was following me around closely, and that was such an incredible feeling.  I talked to her.  And she listened.  And she stayed.

So instead of screaming inside my head, I talk to Lola. “But what if I fall?  You always hear about invalids falling and they can’t get up.  What if I tip my head back and hurt my artery?  What if I slip?  What if I burn myself with the water?  What if the tube jiggles bad?  What if I stroke out and no one knows?”

My solution was to call my mom.  I asked her if I could put the phone on the edge of the sink, near the shower, and leave the line open while I showered. If something happened, I could yell to her for help.  Or if I couldn’t yell, she could just call 911.  It was embarrassing to ask.  But I did.  She listened while I showered.  I was fine.  And when I got out, I told her I was fine, and we hung up for the evening.  I took my shower, on my own.  I took a quick one.  But I did it.  I was utterly exhausted from all the activity.  I had the TV in the bedroom on and reruns of the Jeffersons were on all night. (love that show. I knew so many episodes by heart.)   I was cozy in my own bed.  Lola and Ciro kept a careful eye on me from inches away.  (My independent Zoe was a bit of a cold shoulder that night.  But I saw her check her head in the doorway regularly.  She’d come round.) As wiped as I was, and as cozy as I was, there was no way that I could sleep.  Vigilance was my code that night.  I kept watch, over myself.

And I made it through that night.  I took care of all my medicines, feedings, fluids, and bandages.  I made sure Ciro and Zoe and Lola had their breakfasts.  I made sure the house was ready for my mom and Cuzzin.  When they arrived, I was ready.  I had taken care of things, just like I said I would. Cuzzin took me out and helped me get a new TV.  The guys at the store laughed at the tale of the watered TV and helped us to the car with the new TV.  (Inside my head, I was screaming again.  What a freak I was with my stroke, my tubes, my weakness, my screw-ups. The guys knew I was a freak.  Ugh.  This sucks.)  But I was so grateful that Cuzzin helped me.  She somehow made it a fun adventure and I was smiling at home with her, Mom and the new TV.  They made sandwiches for the Easter meal.  I puttered around, getting them plates and stuff.  I smelled the food and helped lay it out.  But it was not very interesting to me that day.

For a long time I stared at my Cadbury Cream Eggs.  My dad had brought them for me from England.  He brought them to the hospital, just like Farmer Ken and yet not.  See, my dad and I have a Cadbury Cream Egg history. English Chocolate, made in England is different than American.  The first ingredient in most chocolate here, is sugar.  In England, the first ingredient is the milk, resulting in an entirely creamy dreamy sweet gift.  Every year, if my dad was not here, he mailed me my Cadbury Cream Eggs.  They had the smooth creamy milk chocolate egg with the white and yellow filling, not sicky sweet, just divine.  I waited all year for the chocolate box.  And while I wanted to be a good ambassador for the right Cream Egg, spreading the word and educating Americans, I wasn’t ever big on actually sharing the chocolate for a live taste test.  But this year, the eggs just sat in a basket on the built in.  Actually, the basket had to be in the built in cupboard.  Zoe loved to rocket the eggs expertly out of the basket with her paw and crash them around the house, at 2am.  So I put them in the cupboard every night.  And there they sat on our Easter table.  And no one ate them.  But I stared at them, dreaming in my mind’s eye of what it looked like under the foil wrapper, when I would get my first whiff of the chocolate cream combination and how many bites it would take to devour it.  Six bites was my dream number today.   But then I heard Mom and Cuzzin chatting and I was back to reality, back to watching the holiday meal.

The colors of the goodies Mom and I picked for the food were brilliant to see.  But I saw it more as a pretty painted landscape than a consumable foodie meal. I watched them eat and we chatted.  And so it seemed to me, that I became a part of the landscape painting that day.  Not very active, hardly decorative, but rather just a part of the scenery.

 

April 20^th 2016

Wessyfoo is where I want to be today.  And I am there, with Tim and Jason. There is wonderful warm spring sun and lively crisp winds blowing.  It was supposed to rain yesterday.  And we need it.  But it didn’t.  My aunt and uncle are in the barn when we pull up the driveway.  They have a new foster cat in residence.  An inordinate number of strays find their way down our road every year.  A dozen or so make their way inside our hearts and the house.  A most glorious display of feline breeding has graced Wessy over the years.  All the cats are taken care of at the vet, if you know what I mean.  Each cat becomes the last of their bloodline.  And yet the stream of cats never ceases.  Maybe there is a sign on the Pike letting strays where to go? We wonder.

In town, there is a friend who fosters cats and rehabilitates them.  When she comes across a cat in need of a quarantine rehab, for whatever reason, she calls Wessy.  My uncle has built rooms in the barn of chainlink fencing. Each room has all the comforts of home for the inmate or patient, whichever term you like for the cat guest.  Some of the cats have become domesticated enough to be adopted and others are released to be barn cats at local farms.  What a labor of love from my aunt and uncle for these lucky, lucky cats. My uncle is manning the door of one room, while my aunt takes care of food, water and bed fluffing.  With the rounds complete, my aunt is let out and the door securely fastened.  We hug and head to the house for coffee.

“The Mens” decide, with Jason’s power of suggestion to my uncle who needed no nudge at all, to head up to the golf course where my uncle works and “practice putting.”  Well played “mens!”   I get to follow my aunt on her rounds of the yard.  We are on the lookout for the evil red beetles that devour and destroy the lilies.  The warmer weather is bringing them out.  Everyday she goes among her plants because they change everyday. These are not showy plants.  They are indigenous wildflowers.  You have to get down to their level and know what to look for. Ma, her grandmother, taught her names of the beloved.  And my Jean Granny taught me and now my aunt continues the legacy with me.  She touches every plant, and tells them she loves them.  She thanks them for their beauty.  And they thank her every day with their glories. There are Mandrakes AKA May Apple and the blood roots have come on fast.  And there are he trout lilies, AKA adder’s tongues,  wood anemones AKA wind flowers, the little white violets, deep purple violets mixing with Jill o’er the ground, proud skunk cabbage, trilliums, one jack-in-the pulpit coming out, blossoming quince, flowering almond-in bud, bluets AKA piss-a-beds (according to Ma, don’t ask), star of Bethlehem just poking out of the ground, and poor forsythia that will green without blooming bright yellow thanks to an ill-timed storm .  One wild bleeding heart is out on the terrace.  The taller garden bleeding hearts, like my tattoo (tell ya later) will be here in a few weeks. We notice several dogwoods, maybe that have taken hold in the side yard near their elders.                                           

 

 

 

 

 

 

Our rounds end and the “mens” return.  We take time to play with the recent “tag sale find” of a horseshoe set.  Jason and my aunt, more Jason, set scoring guidelines and then work on perfecting their moves.  Play is followed by a Skype chat with my dad AKA Grandad in England. Jason requests my aunt’s garlicky, buttery, salty popcorn. (I eat most of it before Jason can get to it.)  And lunch follows from there. We gather around the table to feast on the Vegetarian Chili my aunt made from last summer’s bounty over quinoa.  I try my aunt’s suggestion and have my chili over cottage cheese.  Holy Yum. I have brought oatmeal with dark chocolate peanut butter cup cookies for dessert.  But we already sampled them with our 11’s coffee.  Jason always has ice cream in Wessy for afters.  The freezer never disappoints and a cone is found for the mint chocolate chip icecream.  My aunt brings out her Ginger Orange “cheesecake,” which is neither cheese nor cake, but rather almonds and coconut oil and other really good for you ingredients.  No one tells Tim the real nature of what the dessert is.  And he loves it.  And I love him.  I love Wessy and all who live there.  I am grateful to be a part of this family and this yard.  We made a beautiful day together.  Thank you.

April 19^th 2003

My Cuzzin visits today and brings me one of her original beaded necklaces.  I immediately put it on.  It is a healing necklace.  I am not taking it off.  The center is a Chinese symbol of life.  There are other healing stones and there are beads from something my dad made my mom at their wedding.  Special Blessing,   Sacred and Healing.  I’ll take it.  I need all three for today, a good luck charm or amulet.

Today is Holy Saturday.  Tomorrow is Easter Sunday.  It is the weekend here at “the home,” which means no treatment for me.  The treatment I need  and can get, is from my Lola.  So, I am going home today.  I am going home AMA, against the doctor’s say so.  They want me to stay here to keep the DPNS going.  They want me here to monitor the feedings, fluids and the medication.  They want to make sure I am stable.  But they don’t have to live here.  They aren’t here 24/7.  They don’t know what it is like.  And they don’t have to.  But I do.  And I need to leave.

They are letting me go, but there are some conditions.

1. I have to start the DPNS back at my hospital Monday.  Yippee!  I wanted to do it with Carole anyway.  That condition is fine.  I cannot drive yet, so I have to have rides.  I hope Mom will be ok with that.  I know I am a burden, but it won’t be for long.  They say I can drive in about two more weeks.  CHECK
2. I have to be responsible for the feedings.  I can increase the rate of the drip of the food.  But I still have to be attached to the feeding machine the majority of the day, including sleeping etc.  Not much time off for good behavior.  (I really like how much weight I am losing.  And I am not hungry.  But they are not amused with this information.)  I am told I can disconnect for taking Lola out for doing her business and doctor’s appts.  I will get a delivery from a medical supply company to my house with cases of the food, as needed. CHECK
3. I have to crush my medicines into powder and put them into the fluids flush.  Okay.  And I have to take the Coumadin, Colase (to make the bowels work.  Evidently bowels aren’t too excited by my present diet)  and other meds once a day.  And the fluids are to be pushed at 4pm and 8am.  CHECK
4. I have set up the Visiting Nurse to come check my INR (translation:  How fast is my blood running?  We want the blood thin and running fast through the arteries.  We don’t want it too thick so that it clogs and can’t get through the site where it is healing in my brain stem.  And we don’t want the blood running too thin and quick.  I am not sure why or what damage that would do.)  and BP etc. I am totally ok doing that.  It will be nice to have the nurse come check on me.  CHECK
5. I have to have a portable suction machine ordered and received by me, before I leave “the home.”  Right now, the suction is hardwired to the wall.  The receiving cup is emptied as needed by the staff.  The tube is used as I need, often.  The tube is hardwired for power to the wall.  (When I go for a walk here, I take a bunch of tissues and spit the goop into them. Romantic?  No, but really effective.  And super necessary) I guess I am going to need a portable suction machine with a big old rechargeable battery pack. I can keep it plugged into the wall when I am being a good robotic patient hooked up to all my machines.  And when I am mobile, I carry this thing around. CHECK.  The machine arrived.  It is about a foot cube in size and maybe five pounds in weight.  The machine has a removable tank for the gunk.  There is a hose attached to the tank with the probe sucky thing on the end.  And there is a nice black shoulder bag to carry it in.  Styling.  (I have to order the supplies like sucky bits and I have to agree to clean out the gungy tank every day.)
6. I have to set up elevated sleeping.  (Funnah medical Peeps, like I sleep. Really?)  At my hospital and “the home,” I have one of those great adjustable beds.  I put the head end up high all the time.  They say I can lower it quite a bit at bed time.  I guess I only need a 45 degree elevation of my head to prevent aspiration in the event of excess secretions during the night. Right…  That comforting thought is not sufficient in my present reality.  I keep the head of the bed right up.  The foot of the bed, I love to play with that.  It is a fun robotic indulgence that I enjoy.  So at home, I need to elevate my head in bed.  My HMO will gladly pay for a fully electric fun medical bed for my apartment, to the tune of about a grand.  I have questions about this.

-I live on the second floor of an older two family.  Would the big bed make it up the turns of the stairwell to get to my apt.?

-Would the bed make it in the doorways of the apartment?

-Where would my bed go while I have this bed?

These persnickety details make me say, no thanks to the bed.  The other option is a Wedge Shaped foam pillow that I can get at a medical supply place for $33.33.  CHECK.  Their concerns dealt with and I am good with the choice too.  Guess what, My HMO won’t cover the pillow that costs $33.33.  HA!  This is ludicrous.  I don’t understand the logic.  I don’t have to.  I pay for the pillow.

7. And, I have to have “a significant bowel movement” before I can leave.  Bottom line for all concerned, this condition is non-negotiable. CHECK. Not so fast, Rachel.  The Colase is not enough, today.  And I have a mission.  Time is Ticking.  I gotta go, so I gotta go.  Desperate times call for desperate measures.  Bring me the suppository.  (Gross, but seriously, this is the only thing standing between me and my angel, Lola.  And isn’t what so much of life boils down to?  What we put in and what comes out.)  The “sample is sufficient,” they say.  And I am free to go.

 

 

April 19^th 2016

On Patriot’s Day, every year that I could, I would drive down to the Cape.  When my Gramma was alive there were two reasons for the drive.  But since 1995, My Cuzzin was always the primary destination. She would feed me the most amazing yummies.  I got to play with her pups and kitties.  Her beads and new crafting opportunities were there for me to try.  The woods beckoned for walkies.  The kayaks were there for trips to see and sea.  Her great friends were there to laugh with.  Shops are fun, and Cuzzin knows the best.  Tattoos could happen together.  P-town had our whale watches and Ciro’s Restaurant, and shopping.  And even now with the Cuzzin moved down south to an equally gorgeous nest, there is the ocean that I need.   The ocean and its remarkable healing properties.  For me, in every season of the year, the ocean is the answer. All it takes is two minutes of the eternally consistent sound of the waves, massaging sand in my toes, refreshing waves on my feet, picking up seashells, searching for beach glass and the salty smell.  And I am well.  The best medicine.

And this year, I need that medicine like always. But now, I get to share it with “the mens.”  This year we are making the Patriot’s Day trip together.  And we, our family together,  is the ultimate family destination.  As we get into the car, I start to breathe better.  I know the road we take in every season.  There is such comfort in the routine of the known.  I know the ocean, it never disappoints.  The radio announces a car accident causing a big back up on our route, Tim alters the plans, and rightly so.  We are going to go through Providence instead.  It’s a great alternative route for us.  But it is not “the route.”  I don’t know it, the markers, or the stops along the way.  Anxiety in me rises.

And then I remember my goal for vacation.  Just three days ago, I had committed myself to the idea and then, my family, we had set a course together of a vacation of shared goals and mutual decision making teamwork. (My default setting of isolation, masked in the noble characteristic of independence and all rooted in my fear, picked a tough road with such a communal goal.) But I know I am happier living my life “the mens.”  I know I am safe with them.  And I know that I am happiest when I know they are happy too.

Tim knows the road well and we made good time.  I sat in the passenger seat, definitely doing my share of backseat driving to calm my nerves.  Of course we got there.  And of course the trip was a good one.  But I was off the beam.  And I knew the problem was not with the road, but with me.  Along the miles I had an idea.  Tim and Jason had not been to one of my favorite places on earth.  And I knew they’d love it.  Tim loves to try new things with us anyway.  CHECK.  Jason loves adventures, mazes, unknown twists and turns.  CHECK.  I know I love this spot. CHECK.  So, I proposed the Knob as our first stop of the day, without really any other details or explanation. “The mens” were intrigued and agreed.  I remembered it to be pretty soon off the bridge.  But it was rather farther down.  It is not in Falmouth, but Woods Hole.  After resisting Google’s assistance and instead directing abrupt stops, turns and lane changes to the driver, Tim,  for a few minutes, I gave in and got help.  Oh yeah, we are headed for Quisset Harbor.  It is just beyond.

So, off the main road, down a winding curvy narrow lane, around the ocean inlet to the end where the gate is, we parked.  We walked into the woods, uphill slightly.   A sign says the area is now a protected birding area.  Good.  The woods open and the ocean is on left and right.  Forward we go, following a natural stone and sand bridge to an island like promontory.  Up to the top of the hill, and then the ocean is all around us.  Every part of the trip is mysterious and surprising for Tim and Jason.  And for me, I am giggling inside, loving every beautiful step of the present trip to the Knob, remembering and appreciating the history I have here with ocean, trees, birds and Cuzzin, and so psyched at the obviously awesome impression this adventure is having on Tim and Jason.  How blessed I am.  CHECK.

 

April 17^th 2003

            I have spent two nights in “the home.”  And I really need to go my home, now.  I don’t know what there is for me at my home, other than Lola and Ciro and Zoebug.  But I know that my home is better than this home at night.  Nights here are right out of a horror movie, for me.  And I never watch horror movies.  It is dark and too quiet one moment. And cold, there is a bitter draft from my windows, even with the brown drapes pulled tight. ( My warm hospital had soft voices and dim light at night that made me feel safe. ) Here, the eerie lifeless silence gives way the next moment to wailing cries.  I don’t know who moans or why.  I am ok as long as every scary thought I have, every pain, every “why me?”, every minute by minute terror waiting for the next stroke, and every single “I can’t handle this!” stays inside my head.  But in the home at night, all those sounds come out into the dark.  And everything that is holding me together, unravels. 

            I’m sorry.  But I can’t take it. 

            The days are bearable.  Each morning, I leave my room early, after taking care of my meds and a 200cc flush of fluids.  (I never thought of drinking water to stay hydrated before.  I just did it. Now I have make sure I push the fluids into my tube 2x daily. )  I disconnect from the machines and head down the corridor, past the nurse station and out onto the roof top terrace.  The latch to open the door is right at my eye level.  (I am glad it is not above my head.  I am so afraid to tip my head back. The doctors say that my artery is beginning to heal a bit.  They say not to do things like painting a ceiling when I get home.  It is not good to tip my head that much.  And I hear that and so I don’t want to tip my head at all.  I look up at things with my eyes now.  My head doesn’t have to move.  Please don’t let the next stroke come when I am alone on the terrace.  It needs to happen when I am at my hospital, not here. )

Most residents that I have seen are in wheel chairs or need two hands on a walker to move.  But I can press the door release and go out whenever I want.  What I call a terrace, is really a rooftop covered in concrete or something.  There is a bench and a few potted big plants that aren’t very lively this early in the spring.  And I can’t get to the edge of the terrace.  There are railings that keep me back.  But the sky is open to me.  The air is free.  There are distinct smells at each time of the day, even this early in the season.  There are things alive, even in the cold.  The breeze carries tree smells, slushy smells, kitchen smells, and even exhaust smells from vehicles or vents are interesting to me.  I take a big breath and try to blow the night before out of my system and replace it with life.

            After a time outside, I have 8:30am DPNS with Abby in my room.  The second session of the day is at 1:30pm.  It takes about 45minutes. We face the two big chairs in my room to each other. Abby pulls a small table over.  On the table she puts a big bowl.  The bowl is filled with ice and about 100 swabs.  Picture a Q-tip and make it about twenty times bigger.  The cottony end is soaked in something like lemonade and it is frozen.  I sit with my face near hers.  I say “awwww” and she uses each swab to hit one point inside my mouth or throat.  She touches one point, with one swab at a time,  in a sequence.  The cold touch in a certain order, over time, may stimulate my swallow.  The big thing we really, really want is for me to Gag!  Yup, twice a day a highly trained professional comes at me for 1 ½ hours with the goal of making me gag.  So far nothing.  She records each group of swabs in her notes, where did she swab and what was the response.  So far, there is none.

            Between sessions I keep pretty busy.  Yesterday, Lola came to visit.  My neighbor friend brought her.  Pets are allowed to visit, even encouraged to see more than just their person.  I met her at the elevator and she twirled and wiggled her bum endlessly.  Lola smiled at me and then I realized how much I missed her.  My heart ached then and has not stopped since her visit.  My neighbor friend brought Lola to me for two reasons.  Of course seeing my dog is great comforting medicine to help me feel better.  But there was something I could do for her too.  The hair of my Red Pomeranian is luscious and long.  When it is not trimmed around her bum, the area becomes quite dirty and not very lady like.   

            So my first order of business with my angel Lola, is to clean her backside.  I take her back to my room and use all the supplies that are stocked for me, on her.  I can lay out a big protective pad, wet clothes or gauze, cut the dirty fir and clean and powder and then get rid of all the dirty stuff in a sealed hospital bag.  Pretty as a picture she is, once again.  But something is missing.  At home, when I clean her unmentionable bits and bobs, we always have a cookie after it is over.  I mean, this is a bit unnerving, this kind of interaction.  So we always clean up and we both get a reward for our efforts.  My reward is her visit.  But I have no food for her.  Nothing!  Not good.  I ask the staff if they have any crackers or something that I could give Lola.  But as I said, it is Passover.  No crackers, but rather an endless supply of Matzoh.  The unleavened bread comes in big sheets.  I secure a sheet from the common room while they are getting ready for lunch.  And Lola has a rather substantial snack.  I break off a piece at time for her to beg, bark, and pirouette to get.  I make it last.  But I can’t make Lola stay.  She goes home, with my heart.  I stay.  For the first time since 4/4/13, I have a goal for the future.  I want to be with Lola.  I need to take care of her.  That is my job now.

             Mom visits too.  She brings me fresh laundry and things from home.  She also brings the mail, full of bills. Ugh.  She brings the report cards too, from school.  It is April and they are due.  It seems forever since I saw my kids.  I try to focus on filling in the accurate grades and writing comments so they can be read.  My hands are so weak.  It takes a long time to complete each one and the writing is sloppy.  Come on Rachel, FOCUS!  I keep repeating this to myself. I’ve got to get them done.  Somehow I do, but I do not remember much of what I wrote. That world is so far away from me now.

            And there are many visitors.  My Godmother, dear friend and coworker comes and collects the report cards.  She fills me in on school and her goings on.  I love seeing her face and hearing her voice.  I am listening intently, but honestly, I can’t remember WHAT she told me.  Three other fellow friend teachers come.  Their smiles and energy is beautiful to me.  But I am so deathly and lifeless in comparison.  My humiliation is great.  Maybe some make-up would help, I think to myself briefly.  The next thought is, why bother.

            A beloved sister-friend comes to visit with her baby daughter, bringing their light and love.  We had been so close. And then we were so estranged.  (And I am not very clear what happened.  Our lives were going in different direction to be sure.  I had been shutting her out and had walked away from her for a while, to protect myself from pain.  What pain?  My pain was here, now. And real.  And she was not the cause of my pain.)  But for some grace, she is here. She came to my hospital several times too. .  And I am so grateful.  I have nothing to offer her.  But I feel safe with her and so I smile when she comes in my door.        

            When the visitors leave, I can take another shower alone.  The heat is good and I am confident in the routine.  I keep myself safe while I perform my daily functioning.  I take care of the wound.  Once a day, I head downstairs to the gym.  I work a bit on balance and the stairs.  There are PT folks there who are friendly to chat with for a minute between their patients.  I can walk out to the terrace. I can and do watch a lot of T.V. in my room.  I started off with nice romantic and funny films or sitcoms.  But I can’t laugh with them or at them.  I can’t stand outside regular people and smile.  Because I am outside.  I don’t fit into the world anymore.  So I change the channel.  There are winter Olympic sports on.  I like watching the Luge and curling is cool.  A bunch of people on cold ice with brooms yelling at a big stone circle.  Makes sense to me.

There is also a lot of poker on TV.  I grew up playing poker with my dad.  He has been a part of the same poker game for 30 odd years.  When he is home, they play one Friday a month.  And my dad taught me how they play.  He said I have a good poker face.  I hate losing my money.  I love winning somebody else’s money.  This sense of competition combined with the desire to be good at something that my dad loved, proved to be highly motivating.  My dad and I would sit near the fire in the kitchen at Wessy.  The light was cozy, the fire warming and the logs crackling, comforting.  We would play closed hands of games I knew and then open hands when he taught me new games.  I love 5 card draw and 7 card stud.   Poker time with my dad made me feel so safe and yet exhilarated,  a strange combination of emotions.  I played off and on with him and friends over the years.

 I remember one time after college.  My boyfriend had grown up in a nearby town and stayed friends with the same group his entire life.  They had a poker game one night and I was invited. I was beyond excited for a chance to play in an adult game of poker.  It was like being asked to play in my dad’s game, which I had always wanted to but never asked if I could. I had collected my coins, found out their ante and their limit from my  boyfriend before the game.  He laughed.  It was a friendly game, he said.  More about getting together, having a few drinks and catching up than serious poker.  I heard him.  But still, this was my big chance to prove my poker prowess.  And sure enough, at the party everyone was drinking quite a bit and playing cards.  I waited patiently for a while, until I was invited to play a  few hands of poker that night, I did not consider the idea of a “friendly.”  I played to win.  And win I did.  And I collected my winnings.  The rest of the table laughed and polished off their drinks in my honor.  They asked me to lay down and show the hand I had won with.  My immediate answer was, “pay to see.”  Those words my dad had taught me well.  Even though I wasn’t going to play with these guys again, and even though there was so much drinking that they wouldn’t remember, I would not reveal what hand I had.  Pay to see whether I took your money with a winning hand or a winning bluff.  I was dead serious and they all roared in laughter. My line was the hit of the night.  I remember that.  

So back in the home, I tuned in to the poker tournaments.  I watched them play a game I didn’t know called Texas Hold-Em.  I liked to watch Phil Ivey.  There were women who played in these very high stakes games.  It was hard core, big money poker.  And the TV showed what all the players had in their hands.  So I watched the “poker faces” around the table.  I could get totally engrossed in how each would handle the next card they were given.  The personalities each had different tells and a range of dramatic or practically comatose reactions to the game.  It was a game.  And yet, to me it was real.  And so I turned the TV up louder at night in an effort to make the World Series of Poker my reality and drown out the sounds of the home.

I couldn’t escape my reality for long.  My machinery beeps, my tubes tug inside me, the spit collects and chokes me, and the fear comes back.  But for that hand of poker I am free.  And so I am grateful for my TV and the volume button on the remote. 

 

April 17^th 2016

        I am on vacation.  The calendar says so.  But it takes a while for me to transition, to turn the volume on the teacher brain down and change the channel to Mom Brain, Wife Hat and Home as my favorite channel.  So of course, sleep is not happening much yet.  And Rondo doesn’t help much.  He can be a bit of a night owl.  Really, he can be a nocturnal party animal.  We used to lock him out the back door in the middle of the night if his playing disrupted sleep too much.  He had the whole attic with cozy arm chairs, Tim’s not yet finished computer office, mountains of yarn, many windows and his own litter box.  It’s not like we were locking him out in the cold.  He would just curl up and go to sleep most times.  But I have been hesitant about banishing him to the attic since the incident with Clarisse the starling.  So I keep him inside.  And he completes a circuit of sitting on each bureau, knocking stuff off each bureau, stretching while climbing the curtains and jumping onto my bladder.  Good times.  But I love him so.  And in between bouts of terrorist activity, he stretches out along my left side, cozy, warm, purring and safe.  Really Good Times.  In those moments, I rest enough. 

        I love having the day time with “the mens.”  We are all so frantic with work and school usually.  My goal for the vacation is to really be conscious of the three of us, being a team, working together and enjoying each other.  And we do.  

 The day is off to a reassuring start with bacon and eggs and toast.  Rondo has to get locked up during breakfast, as usual.  Ciro gets a crumb of toast with butter and Gus has one or two or more nibbles of bacon.  Laundry under way, we head out for a bit.  Jason  needs new cleats for baseball.  A dear family that I have met through being on an AHA/ASA Advocacy Board, have a gently used sporting goods store to raise money and awareness for sudden cardiac disease in atheletes, CPR training for all students, and AEDs available.  Their family speaks from the heart and knows that lives can be saved.  The shop is open once a week and Jason, Tim, and I are there.  We dig through soccer and baseball cleats of all sizes, and emerge victorious with the right ones for the season.  Success.  We mark our success by stopping by our cousin’s cupcake shop.  Tim gets a whoopee pie , Jason wants a rice krispie treat that is made with fruity pebbles or something like, and I get a chocolate chip cookie.

        The candy cane lights that surround the shed and the wreath on its window, along with a wreath over the mantle in our living room, finally come down.  I love Christmas all year round and I go a bit nuts decorating during the season.  These final remnants of the season have been lit since the day after Thanksgiving. For me, the light and hope I see in them is comforting.  But spring is really springing so I am ok with taking them down. As long as I have two more sets of hands, we take down the Easter decorations (That holiday was super early this year.) and clean up our second floor front porch.  Cups of tea are best sitting outside.  And Ciro so loves curling up on his wicker in the morning sun on that porch.  It warms his bones. And his green eyes smile at me.

I take Gus for two short walks.   His toenails are too long and his girth has expanded over the winter.  That is not a very flattering depiction of my beloved God Dog.  My Gus bus puppy luppy, is the best.  He is another angel in my life.   

        Lola got sick very fast about 5 years ago.  She had glorious years with me and Tim and Ciro. Tim was her sweet love, from the moment she laid eyes on him.  I continued to dote on her and she returned the favor.  Ciro was always her partner, or opponent in a wrestling tumbling match.  Ciro never won.  He would wrap Lola up and bunny kick her head with his hind feet, but she barely felt it.  And then he would try to bite her, but the he got was a mouthful of red fur.  So they would roll around like tumbleweeds until we broke em up for a cookie.

Lola grew to love Jason, I hope.  I think so.  She would cozily nap next to baby Jason on our bed.  And when we went for walks with the carriage, Lola would walk a few blocks on the leash with us.  When she got tuckered out, I scooped her up and she rode in the very large bundle basket of the stroller, under Jason’s seat.  It was a sight to see.  Jason would wave at people he saw on our walks that were coming toward us.  Once we passed the people, Lola would bark her head off at them from her seat down below.  She only got them after they passed by.  They would spin around startled by what dog was barking so near, and then look down, see Lola and giggle.  Lola loved the walks and the rides with Jason.   And we don’t need to go into what she thought about the crazy undignified youth I inflicted on her. She sort of denied Rondo’s existence. So, nuff said about him.

So when we saw every system start to fail her, we knew.  When the day came that Lola was not happy, we scheduled her appointment with the vet.  She would not suffer a day in her life with us.  When she had had enough, when her life was not the cake walk I promised her, she gave me a look.  Lola did not give me a smile that day.  She looked at me and needed my help.  It was my turn to “put on my big girl panties,” as Jennifer had said.  I didn’t avoid her look.  Tim and I had a plan for her last day with us.  That day we cooked one pound of bacon.  This is a common event in our house.  Bacon is one of our most sacred and beloved, deeply appreciated foods.  But on this day, it was uncommon what happened to it.  Lola had the lot.  Yup, it was all for her.  And she ate all of it like a champ.  She lapped the plate clean.  Then we took her out to the back yard in the warm morning sun.  And for the first time in weeks, her body moved freely and she scampered around joyfully.  We all said our goodbyes, Tim and I took her to her Doctor for 8:30am, and I held her in my arms while the medicine did its job and she left this world for the next.  Life on life’s terms, a sad one for us and I think for Lola it was a gentle, loving, trusting and very delicious morning. 

        We had done the right thing.  And our hearts were broken.  But there was a big hole in our lives.  I only made it a week before I was checking the shelter’s website for a new family member.  And they had a Pomeranian that day.  Jason and I raced over after school.  We went in and asked to meet the Pom.  She had been adopted already, of course.  So I asked to see a young pup I had noticed on the web site.  Jason and I kneel down on the floor and wait for her to be brought out to us.  The young pup comes out and bounces vertically in the air above our heads in her excitement.  Gorgeous, but a bit high energy for our home.  My face must have dropped.  The nice lady asked us if we want to meet Gus.  Gus?  Gus, the older adult beagle who had been rescued out of Kentucky?  I had not considered him.  He was bigger, older and not Pom like.  But she said Gus should meet us.  Jason and I waited and watched while Gus came out, most gentlemanlike from the kennels.  His tag wagged a bit when he neared Jason.  The nice lady told us to take Gus outside and walk him around their field area for a bit.  It had been raining most of the week since Lola passed.  But we went outside with Gus, and the sun came out.  And Jason smiled.  The two played in the field in the sun for a while, Jason giggling and Gus smiling.  (And beagles, I now know well, have smiling or guilt giving eyes like nobody else.)  And I knew.  Our new GodDog had found us. 

        So the start of our vacation has something for everyone under our roof.  The Mom and Wife Brain is ON!  Our Home is calling loudly to me and with a very grateful heart, I listen.

       

 

         

 

           

April 15^th 2003

Surprise Surprise!  And it is not a good one.  I am leaving my hospital today. All they say that I really need is the speech therapy technique for my swallow.  And they really want me getting that every day.  I can walk ok.  They had me practice stairs.  I can reach to wash all my bits and bobs by myself.  So I don’t need to stay.  Other than Carole, my speech guru here at my hospital, there is only one person in the county who does the technique.  Fine.  But she is at a nursing home.  Really?  The rehabs around here only take stroke patients with more than one need.  And even if speech is a need, they don’t do the DPNS that might bring back my swallow. So, I am going to a nursing home.  I am going the very nice nursing home that is about a mile from my real home.  I am going to be a patient at the nursing home where my mom’s dear friend and mentor lives.  She had a couple of bad strokes and can’t speak.  She lives there.  And I will live there too, for now.

 

 

 

 

It takes a massive delivery cart to load up all the gifts I have gotten in the past 11 days.  The plants alone, number 10.  It takes a while to pack up the cart, a bag of some clothes has to be coordinated my home, plans for my transfer have to be written and there is a mountain of paperwork to be signed, sealed and delivered.  I don’t want to leave my roommate.  My room is sunny.  I need my nurses.  The atrium is pretty at night with twinkle lights.  Farmer Ken is here.  I am safe here.  Inside my head, it is screaming again.  “Please, please, let me stay.  I need to be here.  When another stroke comes, I want to be right here where you know what to do.  I have friends here.  Please, I beg of you… I am not ready.  I can’t do this.”  But out of my mouth comes my polite good byes and questions like “Did you get my slippers from next to the bed?  Do we need bubble wrap on the crystal vases?”  Really?

I ride across town, over streets I have driven a million times.  I drive past the side street for my school.  I pass my favorite restaurant.  Mom and I have gone there at least once a month since I was 6 and we moved here.  I always order the Bacon Cheeseburger with Fries and Onion Rings for supper and the Peanut Butter Pie for dessert.  Sometimes, I can’t finish the fries.  But I always finish the Peanut Butter Pie.

We pass the supermarket I shop at and head down the road further into the West Side.  The snow has melted.  The air is still cold but the sun is starting to get warm in the middle of the day.  The complex with the nursing home is huge.  There is a big gym and school out front and there is short term care behind that and then all the way at the end of the drive, in the woods, is my building.  I start shaking with cold.  But no one notices.  The shaking, freezing terror is settling deep into my bones.  I follow staff.  Up the elevator we go.  One floor is the locked floor for patients with Alzheimer’s.  The doors open and there is a glass wall.  The door in the wall opens to a huge terrace, I think.  As we turn to check in at the nurses station, something outside on the terrace catches my eye.  It is not something, it is someone.  A patient.  Maybe I can go out there too.  I meet nurses at the desk.

They take me back down another hallway and we go in a big brick room, no windows  with a walk in tub at the end.  I never knew there was such a thing.  The walk in tub is also a scale.  They want a weight check.  I open the side door of the tub and sit on the seat.  22 pounds.  I can’t believe it.  In 11 days, I have lost 22 pounds.  And I smile.  Freakshow, I know.  So there is a benefit to this stroke thing.  It is a very successful diet.  And I am not even hungry.  Wow.   No one smiles or laughs as I am saying this.  Awkward!

Now we can get me to my new room.  Out that door and back down the hall, pass the nurses and straight and down a long corridor.  I don’t see anyone in the halls and peeking in doors as we walk past, I can’t see anyone.   Almost to the end, on the right is my room.  The rooms are all doubles.  But mine will have only me.  They aren’t having me share with a resident.  Why?  I am 30 and the patients are all over 70 right now.  They think it is best.  The room has brick walls.  There are big windows looking into the woods and up a small hill.   The sun does not come in my room here.  Very dark and I am very cold.  I have my own ½ bath with sink and toilet.  There are two beds, a desk like table, two bureaus and two big arm chairs.  There is a TV on top of one bureau.  I turn it on and leave it on.

On the wall above the desk is a calendar.  I use it. The DPNS will not start until tomorrow.  And I will have two sessions a day on weekdays.  Nothing will happen on the weekend.   What will I do the other 23 hours of the day?  It is the afternoon.  My family heads home.   The day shift heads home.  The residents/patients are getting ready for supper. At the end of the hall beyond my room, is a big open community room.  Residents who are able, eat supper there.  It is Passover and the home is keeping kosher.  It actually smells good to me, familiar herbs and onion.  But, of course, there are no food orders for me.  So I don’t go to the community room.  Why would I?  I don’t need regular nursing care, so staff doesn’t come in much.  The halls are pretty empty, so I sit alone, scared to leave the room.  Before supper time, a nurse’s aide checks in with me.  Am I settling in ok?  Do I need anything?  Do I want to take a shower?  She goes to leave, and I compute what she has just said.

I call to her loudly, out loud, “YES.”    I haven’t had a shower since the morning of April 4^th.  They didn’t offer at the hospital.  And I didn’t wonder about that.  My bathroom here has only sink and toilet.  So where is this shower?  I don’t think she meant now, for a shower.  But I did.  Realizing I wasn’t going to need supper and maybe hearing the urgency in my voice and possibly seeing how out of place my unwrinkled face looked, they nice aide said she’d be right back and I could have my shower.

She settles her other patients, checks with the nurses about my case, gets a key, a towel, some medical supplies and me.  I disconnect from my machines and follow her closely back down the corridor to the nurses station.  We don’t turn right towards the elevators and terrace, but instead keep straight.  Three doors down on the right, she stops and uses her key. It is the room with the tub scale.  There is a curtain hanging on the right side of the room, just inside the door.  Behind the curtain is a room, long and deep.  First there are two benches with hooks above them. The nice aide has me down my things like towels and soap and washcloth.  Then she puts down the medical supplies.  She shows me a big gauze square that has plastic on one side.  Gently she puts that over my peg site.  She shows me how to tape it and tells me that water shouldn’t get in the wound, but to keep an eye on it while I shower.  She tells me that she will wait outside the shower area, on a chair near the tub scale.  If I need her I can call, but I should be fine and she wants me to have privacy.  Knowing  that  she is the one who offered the shower to me and got the key, and believing that she is sitting just outside, I am safe.

The rest of the long room is all showers. I take off the soft sweatpants that I got from home today.  The flannel shirt is way too big now, I notice.  The clothes from home were a comfort.  They have cat and dog hair on them.  Special, blessed garments.  But now I want them off.  The tiled floor in clean and has two drains in it.  There are three shower heads, one on the left wall, one on the right wall and one on the rear wall.  I reach out to turn on the shower head to my right and adjust the heat dial towards hot.  In a second I see steam and head towards the water.  I lead with my right leg and then screech, out loud.  Nice Aide comes to me.  She takes my left hand in hers and touches the water stream.  With the left had I can sense the temperature.  I guess I can’t feel that real well with my right.  My left hand, and hers, says the water should be turned down a bit.  All set now.  She heads back out.  And I head in.  Now I turn on the left shower head.  I check the heat with my left hand and stand in between the heads.  The water is hitting the sides of my legs. The warm water rushes over me. (I feel the spit in my mouth, but I can just spit down towards the drain.  No need for the suction here.  No one to watch me struggle.  No one to pity me.  )

The warmth comes into my bones a bit, pushing back the aching freezing terror.  I look at my PEG tube and the water is nowhere near it.  Now I look at the back wall of the room.  The third shower head should be on too.  Again, I turn the dial to hot, and test it with my right hand.  I am getting the hang of this now.  I turn my back to the rear stream and slowly move back under the water.  I let the water just stream down my back and legs.  I am not ready for the water to actually hit my stomach.  But the warm water and heat caresses me, and I stand for a long time.  I am actually getting sleepy and feel myself relax.  I shut my eyes and feel cozy.  The nice aide lets me rest in there for a long time.  After a time, she asks if I need help with the soap or shampoo.  I snap back to the present and remember that I have more to do here.  I do suds up and I relish the smell of the soaps and the bubbles. My skin is warm and clean under my own touch.  When the last soap bubbles disappear down the drain on the floor, I turn off the water and dry off.  The air in the room is warm and soft.   As she opens the door, the cold medical air of the home hits my face.  Oh yes.  Here I am again.  I start shaking inside again with terror.  But nice aide, as if she knew, tells me right then, that whenever she is on shift and has time, she will let me take a shower.  Other residents need supervision in the shower and only get them at certain days and times.  But I, I can have as many as I want.  She trusts I am safe in the shower.  And with that, I feel a bit better.  There is something to look forward to.  She takes me to my room. I am so grateful for her time and her gift to me.

 

April 15^th 2016.

This morning, on my first cup of coffee, I looked out the window into the predawn quiet moment.  The big bunny was back again.  I can barely make her out down under the bird feeder.  She is so still and it is not light yet.  But she raises her head, that nod making me know she is there.  And I raise my coffee.  Both of us have a quiet morning routine before our families arise.  And I am blessed that she was there again today to start my day with me.

At school we celebrated our fabulous student teacher on her last day.  The kids made her a card and all signed it, without me or Miss knowing about it.  I got her a poetry anthology and had all the kids sign it without Miss knowing. I made a cake with Henry Sugarhouse Buttercream frosting.  Of course I baked.  That’s what I do.  I have to give the kids the credit.  I was so wrapped up in sad feelings of her leaving and excitement about the April vacation,that I spaced out about having a sweet treat to say goodbye.  Thank God that my kids are who they are and told me to make one for her.  After all, what is a party without cake?  And so we had cake and hugs and tears.  I am not good at goodbyes.  I hope Miss stays in touch.  Maybe I can help her down the road.  Maybe she will want just to call and vent about HER classroom soon. Maybe.

Even saying goodbye to the kids for a week of vacation is tough for me. (All of our behaviors show that school is a safe place for us.  It is a comforting routine.  And even as we Love, Love vacation, we are nervous about the unknown.)  I worry about the kids.  I worry a lot.  But two things help.

1. My first year of teaching, I told my mom how scared I was for some of my students.  She told me, “you have no idea, how small a thing it takes to save a child.”  Those words echo in my head and come out my mouth a lot.  I know that my impact on my students, matters.
2. One of my dearest crochet friends told me what she does when she worries about her loved ones.  She imagines there is a big trampoline in her backyard.  And she puts her loved one on the trampoline, in her mind.  And she bounces them up to God.  Once they are in God’s hands, she can let go.

The sun shines after school and friends of mine, whose children are friends of my son’s, head to the park.  I sit on the warm playground and chat with friends.  Cool breezes are no match for warm sun.  Spring is here.  Giggles galore explode from our children.  Spring is here.  I want to get home to Tim and the 4 leggeds. I can’t wait to give him a hug and a cake I made for him.   We have a whole week together.  What a gift!

April 14^th, 2003

            During the day, there are so many visitors.  Friends and family come.   They bring me beautiful gifts of flowers and vases and stuffed animals and toiletries and inspirational presents too.  My bedside table and the window sill overflow.  I am touched.  And I try to spruce up, smile and not use my suction too much. I am getting many cards too.  It is overwhelming how fast the word spread and how many people reach out with best wishes.  (In my head I think about the gifts, calls and cards:  I am 30 and unmarried and a renter.  So I have had no showers or housewarming parties.  And this is the way I get all the “stuff” and attention that my friends get.  Nasty selfish, ungrateful thoughts, but they are mine.)

            I think about my PT and OT and Speech sessions.  It is about 1 and ½ hours per day.  I wish it were all day.  That is the way to get human again.  I want more of that.  But I one get 1 slot a day.  So while it is great to see people who know me and care about me, I admit that while I am with them I am thinking about my therapies.  When can I try to be human again?  When can I be with the folks that don’t know me?  Medical staff don’t wish me to be just like I was.  They want me to get better, from where I am now.  They don’t remind me of what I can’t do. They make me feel safe.   I think about that when I look into the eyes of my visitors.  I try to avoid eye contact with family and friends.  I need to avoid their looks of pity and I can’t let them see my abject feeling of failure in my soul.   

            Somedays, my family visit all together.  And the room is not going to be able to seat us comfortably.  So we go to the Atrium. In my hospital, down near the Dunkin Donuts, there is an atrium.  The walls are glass, it is 3 stories tall, with trees, waterfall, a walking track and even some birds that have come inside.  You can sit at tables with umbrellas and have coffee and snacks.  So we sit: my Jean Granny (the one who had the stroke.  She walks in.  She eats and she has coffee.  And she goes home.) My aunt and uncle are there.  My dad came from England. My Cuzzin comes from the Cape. And my mom is there too.  They all come, drink coffee and have bagels perhaps.  And at the end of the visit, they walk out and go home.  Not me.

  And so I wonder about this special time with my family.  It is wonderful to be with them, in one place.   I memorize the visit; not just drooling over what they all eat and drink, but the colorful ensembles they wear, the smells of home cooking on their clothes, the plentiful pet fur that travels with all the best people, the strong hands around my shoulders, and the loving sparkling eyes. These are the people I love most in the world.  And I know they cherish me.  And yet I feel shame about myself.  They are ALL my elders.  All of them.  I am the only child and only grandchild on both sides of my family.  I am the end of the line.  And I am the one in the hospital? I am the one who can’t eat?  I am the youngest.  Some hope for the future I am.  What future?

 

April 14^th 2016

        Here is the proof.  I didn’t kill all the red tulips.  I am just not that powerful.  Last week I was playing Mother Nature by taking the snow off the plants.  Then I was playing God by saying they were dead.  Two big roles, not mine.  Way to get me right sized, and smiling.  “Life is funny,” I say as I shake my head at the very much alive bloom.  I am repeating a treasured line of my Jean Granny.  She had so many.  I stored the words and her saying them, in my mind knowing at the time, that she was right.  What she said was true, and smart and important.  We would sit on her bench in the garden in fair weather of close to the wood stove in foul.  Jean Granny would tell a story and say “life is funny” as the closer of the tale.  And the line is still perfect.

        I smile at the flower and head inside. I am still on cloud 9 from speaking at my hospital the other day.  To say what so many stroke survivors can’t, to say thank you, to tell my story in a way that “moves them,” as they shared with me, is a priceless gift to me. But, I am also exhausted, to the bone tired.  At school we are gearing up for vacation and then PARCC testing right after.  Our wonderful student teacher is going to pass the torch back to me, have her last day this week, complete tests at college, graduate and head off to find her own classroom.  And we are better for time with her.  At home we are trying a new recipe for supper, cheeseburger pie.  Jason has homework, time to play with friends, baseball practice, and new forms to learn in Tae Kwon Do.  Tim is busy with fixing computers, ordering parts, designing systems, our taxes, coordinating camera systems and hopefully putting the electrics into an old oil lamp I got from dear friend and mentor.  (Tim can do so many things already and is always up for learning something new.  And I sure keep challenging him with things like the lamp.  I am so grateful for him. )  And Stroke Advocacy projects are growing with the speaking engagement done, we are now heading full swing into fundraising for our Heart Walk Team.  I GET to do all this today.   I think, no, I KNOW, that I have pushed my limits, a bit too far. So it is now my time to sit on my bench with Tim and a cup of tea, warm my bones in the spring sun, kiss my son and head to bed. 

April 12, 2003

The “site” of my feeding tube is “tender.”  Translation, this hurts.  I mean, this gob of plastic is trying to live inside my belly, but not be sewed closed inside.  It is sticking outside too.  And this is not normal.  Several times a day, they “flush” the tube.  Great, now I have a Six Flags water park ride going on.  Ick.  They are happy because I am getting nutrients and stuff.

The area is beyond tender.  The nearest point of reference is, remember how it feels when you put your finger inside your belly button and push a bit?  It’s that feeling, but weirder and you know that you are touching inside your body too.  Not just the outside.  Not normal.  The bandages are stuck down with the plastic tape.  There are two kinds of tape in this hospital.  There is a nice soft cloth tape.  It moves with your body and breathes and you don’t feel it on your skin.  It doesn’t hurt when it is pulled off either.  And then there is the plastic tape.  I believe it is really Duct Tape, only white and in narrow form.  It is stiff and harsh.  When I move, the tape stays put and rips skin is in its path.  Taking the tape off is equivalent to shaving with a really dull razor.   And today, I feel plastic tape.  Not going to move much today. Nope.

 

April 12, 2016

Today I am at school.  It is a busy full day as I begin to take back over my class a bit.  My wonderful, first ever student teacher’s last day is the 15^th.  So we are transitioning.  Less watching and more doing in my room today.  And I am wearing a fancier, slightly more special outfit to school today.  After school I get to speak at the Nurses Symposium at St. V’s.  I spoke two years ago and I am psyched that they invited me back.  Nurses are my audience.  Nurses that may have cared for me when I was here in my stroke. The theme this year is “unexpected life events.” Perfect.

Here is what I am going to say and do with them.

Unexpected Life Events  4/12/16

 

 

Good afternoon.  Thank you so much for having me back to be a part of a day about “unexpected life events.” Advocating for Stroke Awareness, sharing my survivor story and speaking for those stroke survivors who can’t, is a real passion for me.

Today, I have 3 things that I want you to take away with you.

1. Let’s spread the FAST campaign of Stroke Signs. 80 percent of strokes are preventable. We have the power to be the change!
2. I have the power to tell my story.  Hear what Stroke is like from the inside out. And hear what power YOU have in the survivors’ lives.  You heal.  You Matter!  Thank you!
3. Just keep an open mind.  Be open to the truth that all of life is “unexpected.”  Be open to our conversation about the choices we have in our lives.  And keep an open mind that our lack of control, is a gift, not a punishment.   Believe that I believe.

 

Thank you.

Start with #1.  My stroke is a part of history.  It happened. But as we know 80% of strokes are preventable.  They never need to happen.  I see my neurologist, who you know well, twice a year for botox.  Every visit, I ask him if things in Worcester are getting better.  Are people learning the signs of a stroke and getting help FAST? Dr. K is not very positive in his response.

I have an idea.  A few years ago, I saw a story on the national news about a 3 year old boy who was working with his dad in the back yard.  Dad cut himself with a power saw and was bleeding out.  The 3 year old knew to call 911 and get help.  He saved his dad’s life.  As a teacher, I know that kids are the untapped resource to save lives.  So, I believe that if we teach kids FAST (Face, Arm, Speech, Time to call 911) then as they are in their homes and neighborhoods and schools and if they see a Stroke Symptom, then they can call 911.  And since Time is Brain for the stroke survivor, you do the math.  I had my students learn a FAST song set to the YMCA melody.  We recorded it and it is on YouTube.  https://www.bing.com/videos/search?q=fast+by+elm+park+students&view=detail&mid=A115C86270AB369A4BDCA115C86270AB369A4BDC&FORM=VIRE

They did a  great job.  But I am working now on recording it again with fewer students and clearer impact.  My goal is for the Worcester tv, radio and school email to share the new video.  If each teacher could just play the video in his or her classroom, and supersmart kids learned it and brought that knowledge into their lives?  We can prevent stroke.  (And my idea is local and FREE!)  So that is #1 of my agenda today.

Prevent Stroke and kids are the key to getting the word out FAST!

#2  My story.  Not all those that have strokes can tell their story.  I know stroke from the inside.  And I know how you have helped me heal.  I can bridge to gap.

On  April 4^th, 2003, I went to my PCP at Fallon May Street, now Reliant for a check up on my thyroid. And right there, I got hot, I slumped, I slurred, I lost my swallow and I had my STROKE.   (my case is now practiced protocol at the office! Legend!)

The nurse came in and got help fast.  I remember her hand, strong and soft supporting my side. Dr. S came in. quiet and busy.

I remember the ambulance ride… the EMS man calmly helped me breath and chatted with me, right next to me the whole ride.  I think I heard in the ambulance that I was having a stroke. In the ER here at St. V’s – I remember the bay I was in.  I got in FAST.  Mark, the ER nurse, gave me a suction tube to take the secretions that were choking me.  I remember thinking that he was a genius working for God to have that solution.

The doctors and neurologist came in and updated and offered TPA and other things.

I heard them say stroke….I listened and made choices….But Rachel was not there.  (I am not sure who was making the choices.) The Rachel I had known was gone that instant.  Surreal does not cover it.

I mean………….Stroke didn’t happen to me.  I was and still am, a big fan of the Golden Girls.  Sophia’s stroke was funny.  It gave her a freedom to be honest that I yearned for.  But it was TV and Sophia was old. I was not laughing.  This was real.  And I was only 30 years old.

Stroke happened to my Grandmother…..when she was old  and totally reduced her quality of life………….stroke can’t be for me. If stroke was mine, in that moment, it meant that my life was over. If human beings eat, sleep, walk and talk…and I could not eat…… At that time Stroke changed me from Rachel the human

To a non human alien super freak……………….

What and who was I?  I certainly didn’t think stroke could be a god given gift.  I do now.

From the ER, I was up to ICU.  Every beep that night I heard was for me dying, I was sure.  I was afraid to move, I think I remember thinking that I might explode or bleed out or rupture….Insane new thoughts.  And I never said these thoughts out loud.  If I didn’t say STROKE, then I hadn’t had one……right?  The nurses of the ICU were my care and comfort.  They touched me, saw me, heard me and I knew that at least I wasn’t dead.

But most of my time in the ICU, I was alone. There were walls aside me separating me from other folks who needed INTENSIVE CARE.  In my mind, the ICU was for folks who might die.  We might not make it.  That was our reality.  I did not want to shut my eyes and die and disappear.  I had no FAITH that I was in safe hands.  The human illusion of CONTROL was having a hard time getting right sized.

My minister, my mom and my best friend came to the ICU.  My minister massaged my feet.  Hands on….I was uncomfortable with her doing that.  Stiff upper lip New Englander was not used to this….And yet I craved the touch.  It warmed parts of me that I thought were dead. Her touch assured me that I was alive and not a leper.  I wanted so much for her to stay….and yet I NEVER asked again for touch or comfort after that.

Soon I was moved to the Neuro Unit. I was seeing medical peeps after medical peeps.  The docs and docs in training surrounded my bed at regular intervals.  I remember thinking of Jesus in the manger with all the wise men.  People came from afar to see the freak.  (I was friendly and helpful to them…but that is how I felt.)  I read the board for shift change and my new routine was your routine.  The nurses set a safety net for me.  You were a constant, caring lifeline.  I wanted to stay close to you….the only faith I had grew out of feeling I could trust and rely on you.

Farmer Ken, my night nurse and friend from church…brought the challenge of fresh maple syrup in a big jug to my bedside.  I hated him and that challenge.  Now I see the gift. Mark the er nurse came up to the neuro floor.  He took me for walks to the outside.  To the spring sky.  I craved that fresh air.  I felt alive for a few minutes.  He did not have to….HE gave me human moments.  (Those moments appreciating breathing and sky outside are a part of RACHEL now. I choose that!)

The PEG tube went in as soon as they realized my swallow was not returning at all.  And that sealed my fate from human to freak complete with robotic feeding tube.  I felt a character on the Jetson’s. The amazing and talented Carole, speech guru at Med City, said 1 technique might save my swallow.  (And the only place where I could go inpatient and get it was JCC nursing home! I was 30 and everyone else was old……..it was horrible.  I was scared. I was isolated.  I was having a massive identity confusing life crisis.  And it was all inside my head.  There was no one to talk to, nor was I in the habit of considering and sharing thoughts like these.   I didn’t know who I was anymore and I didn’t trust my body.  I kept all this talk inside me. DPNS (describe) occupied 1 hour a day.  The other 23 hours I paced the roof top terrace.  I was obsessed with sky and fresh air.  I had never truly appreciated those things before being in the hospital for 2 1/2 weeks.  Thinking back, this was the first thing I was grateful for post stroke.  (That and the first shower! Wow was that a luxury!  But I was afraid that the PEG tube would take on H2O and I would drown.  I taped so much saran wrap over that sucker!)  It was report card time, so my friend brought my report cards and I got them done in the home.  I remember that!  But those brief incidents only spotted the days. And so I signed out against medical advice, the day before Easter and went home alone to my apartment.  Not bright!

Carole,  my speech guru and Dr. K, my neurologist sent from heaven, worked hard.  And so did I.  I continued the therapy and eventually got my swallow back about 9 weeks months later. My body operated ok.  New stroke symptoms in new parts of my body popped up and then disappeared without warning.  One particular thing that has stayed with me and I work on still were spasmodic muscles in my face that made me sound slurred, slowed my speech to a snail’s pace,  and I thought I looked like a super freak.  It could improve, but I couldn’t get passed the shock and do the work or accept that I might look and sound different than I had on April 2^nd!  Many times a day I stood in front of the mirror and looked at my pupils.  Were they even?  Was it going to happen again?

Over 9 months I did heal, in many ways physically.  But spiritually and emotionally, I was increasingly deathly ill.  I did not want to live in the changed body, did not want to accept the changes (like no sense of hot or cold temps or pain sensation on the right side of my body.  I had to retrain for cooking and bathing to check heat levels with my left hand.! During winter the cold in the right side sets in deep.  I can’t regulate my body heat.  Even now, I deny the stroke symptoms and ignore my body….it doesn’t work. But then, I resented the change and saw only deficits, not opportunities.  I spent a lot of time advocating for my rights and services.  I filed something like 14 grievances with my HMO in the first 8 months. I had to fight for my rights.  It felt good to be doing something and I remember realizing then that so many stroke survivors aren’t able to do what I did to get what I needed. (my swallow alone cost $1,000,000 to get back! I saw the invoices. HONEST!) One time, I couldn’t get an answer from the HMO.  No one would talk to me.  Hours on the phone. So, I got in my car, drove to the HMO administration offices and told them that I would wait until someone heard and saw me.

I lived, trying to die, a couple of very dark years.  I would not accept the way I was changed. Reality stunk!  And that was it! My family, my friends, my job, community did not understand the changes any more than I did!  I was ISOLATED! I was Angry.  I sat in isolation for a couple years after my stroke.  I sat in the anger at how I had lost control and how I had changed.  I cowered in the corner of life, locked in fear….Hopeless.

But I did not die!

And then Things Changed.  I changed.  I had always asked “Why did I have a stroke, why me?  And why didn’t I just die rather than live like this?”  One day the questions changed to “why not me have a stroke?  And Why was I lucky enough to have it in the doc’s office and receive immediate lifesaving care?  And what was I saved for?  What can I give to the world?”  Since that day, and I am not sure what day it was or what inspired the change.  I guess I went so low, didn’t die, and I had nowhere to go but up!

I teach full time, sixth grade.  I have a different set of life principles that the kids seem to really respond to. It is nearing the end of my 20^th year teaching.  I do need an assistant in the classroom to help me. But I have it and accept the help.  (Honestly, how does one person do my job alone?) My handwriting stinks and that is not good for a teacher.  So the city provided me with a laptop and a printer.  They invested in me and I believe I am a good investment now. Honestly, the kids are my heroes and I tell them so.  My students have a very diverse and challenging experience.  Most do not have the gift of a safe and innocent childhood.  Their capacity to grow and learn and love with so many direct obstacles is a daily inspiration to me.  I can see them clearly now.   I do have other passions too.  I bake and eventually want to do it full time. I am blessed with a husband and son poststroke. Being open to the best man I know, my husband is a gift of my stroke.  Being open to what life has to offer, something stroke survivors learn at the exact moment of their stroke.  We know we are not in control.  Life can change in a heartbeat.  And if you can move beyond the anger and fear of that, you can be open to the best in life. My pregnancy was also a total surprise.  Talk about an unexpected life event. But we are so grateful.

You, on the front lines, were the first to meet the New Rachel. You didn’t know me before.  And I was brand new from the moment of my stroke on.  Stroke took my humanity.  You gave it back. Your touch,comfort,care….just saying my name.

Here is where I paint a word bubble over my head like in a cartoon and fill ya in on this stroke head______________

(Inside of the stroke patient is a survivor.  I believe that we are the strongest, most resilient folks.  We are forced to restart our entire lives and beings.  Our bedrock is ripped out from under us and we have to begin again.  Everything,inside and out of our bodies and spirits, changes. We are face to face with a new self.  And we have to accept that.  We have to grieve the death of that person, of that sense of stability.  Compound that with the fact that, in the early days out from our stroke, we are terrorized.  We do not trust our bodies.  They are not under our control and we KNOW it.   And all of you caring professionals are our life lines and our security.  You make us feel human again.  Know that!)

And this all bring us to #3, perhaps the most important.  So now I need you.  I gave you a paper with 7 things to fill in. On the back of that paper are the words to one verse of a song by OK GO.  It is a song and video recommended to me by the mom of one of my son’s friends.  I learn the best things at the school fence waiting for school to let out!  “Upside down and Inside out is the song.”  I’d like to show you one part. http://www.vevo.com/watch/ok-go/Upside-Down-Inside-Out/QM4TM1600002  The whole song rocks.  But the verse I want to attend to is from 1:07 to 1:30. The lines are “so when you met the new you, were you scared, were you cold, were you kind?  Yeah when you met the new you, did someone die inside?”  That hit me hard.  Often what I want to explain, I hear in a line of music, or a riff on the Golden Girls.  And here is a great way to look at stroke, at unexpected life events.  YOU MEET THE NEW YOU IN THESE MOMENTS, BECAUSE OF THESE UNEXPECTED EVENTS.  IT HAPPENS AND HOW DO YOU REACT?

#1 asked you to fill in the blanks with two words, two names that you have for yourself.

I am a ___________ and a ____________.

Would anyone share what they wrote?

Be open to other names.

#2 said Name 3 activities that you loved to Do when you were a child.

Would anyone share?   Consider loving new activities.

#3  Name 3 things that happened when you were a child that you had no control over.

Would anyone share what they wrote?  Know that you made it through those times.  But most likely, not alone.  You had help.  Be open to those that help you through tough times.  They are everywhere.

#4 Name 3 things you love doing today.  Please share those things.  Spend more time and energy on those things.  Be open to following your smile.

#5 Name 3 things you’d LOVE to do, but don’t know or haven’t tried.

Who would like to be brave and share?  Be open to the possibility that you WILL try them. SOON.  And know that you will be safe and taught well by new friends.  Believe that I believe.

#6 At what age are you too old to learn a complicated new task?  Can I hear the ages please?

You are never too old.  If you wrote a number, cross it out and write that you never stop learning and growing!

#7 Name 3 things today that happened that you have no control over.  Please share out the small things, like traffic and the big things, that make ya cringe!  Thank you for being brave, opening your mouth.  You are getting right sized.  Be open to your very small, unimportant place in the grand scheme of things.  Be open to the truth, you mean everything to somebody.  Your smallest action, word or small means everything to someone.  You are that important!   You are to me.

 

Now I get to go see Jason have his first class as a Blue Belt.

Life is good.