June 7th 2003 & 2016

Today’s Tawpic for Coffee Tawk:

Image _1 for 6_7  The legacy of Muhammad Ali is vast.  We could tawk every day about his wonderful one-liners, philosophy of life, professional and athletic greatness, political activism and spiritual lessons.

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

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

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

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

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

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

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

The World’s Greatest

By R. Kelly

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Songwriters: ROBERT S. KELLY



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


June 7th 2003,

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

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

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

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

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

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

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

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


June 7th, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

I was making good strides on the mountain of ice cream.  I had momentum on my side.  I loaded and lifted and shoveled it in.  But as the bites became smaller and the pauses between each grew longer, I thought what if I changed the goal?   What if I made a different ending to the story?  I could be sane and stop when I was full.  That is a healthy message to send.  I could make the goal to share with my husband. I could get a spoon for Tim, so he could enjoy a real amount of ice cream on the hot day too.  I could ask him to help me.  Even though I am asking for help to accomplish a truly cuckoo goal, it is still asking for help.  It is still the hardest thing for me to do.  It would still be good practice for becoming more dependent on those who care about me.  It would be a less defiant act than I tend to make.  It would be a big change in my pattern.  And it would prevent me becoming disgustingly sick by my own hand. Next year, the goal could be to come here on the day it opens.  That would be a different kind of goal. It could work.   All these options were before me.  Image-_3-6_7

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


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







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