“Why does no one take you aside and tell you what is coming?” David Foster Wallace

Isn’t this a great quote? It’s at the beginning of Sam Shepard’s new book The One Inside. I just started reading it. Let me talk about shoes for a bit. I’ve always maintained that you can tell a great deal about somebody by their shoes and teeth! Before I had the stroke, I would say it was about someone’s outside appearance. Post-stroke, I still notice the shoes and teeth but I see it as a reflection of how people view themselves. I’m not talking about spending a lot of money in those areas either.

There is a movie called Kinky Boots which came out during the time I was hospitalized. Great movie! The basic premise of the (true) story is that a man inherits a shoe factory after his father’s death. The man Charles Price (played by Joel Edgerton) may have grown up with his father in the family shoe business, but he never thought that he would take his father’s place. Yet, the untimely death of his father places him in that position, only to learn that Price & Sons Shoes is failing. While in despair at his failed attempts to save the business, Charles has a chance encounter with the flamboyant drag queen cabaret singer, Lola (played by Chiwetel Ejiofor). His complaints in cross dressing are about the inadequate footwear for work which leads to a suggestion for the plant to change their product and in the meantime create a chance to save the business: make men’s fetish footwear. Lola is convinced to be their footwear designer and the transition begins. Now the disparate lot must struggle at this unorthodox idea while dealing with the prejudice of the staff. One of my favorite lines from the movie is “and remember. You are not making footwear. You are not making boots. You are making two and a half feet of irresistible, tubular sex!” They remake their product — same factory and same people but a completely new end product. Makes the saying “put your best foot forward” very meaningful. I love this idea.

I was in a wheelchair for about a year right after the stroke. I’ve said that I had a foot drop. I love shoes! My height allowed me to wear high heels. The process of renewal meant learning to use flats. Learning to walk in flats! I didn’t even own a pair of flats. I did own a pair of tennis shoes, so that’s what I wore for the first year. This alone was a big deal, since before I had the stroke, I never even wore tennis shoes out in public! So now when I look for clothes, I think about the type of flat shoe that will work. (Not all clothes can be worn with flats.) This becomes a big deal. So now the quote about putting your best foot forward means much more. They also say in the movie, “In these shoes? (I don’t think so!)”. I still love shoes but I appreciate them very differently.

There’s a saying that goes “When things don’t go right, go left”. That has been one of my mottos post-stroke. It’s been a metaphor but I can use it literally. I’ve said that the ataxia is worse on my right side and almost non-existent on the left. Things that I used to do with my right hand, I now do with my left. It hasn’t been easy and I still try to do things with my right hand (it’s an automatic response) but I quickly realize that I can’t.

The title of this post comes from a book by Michael Dorris — A Yellow Raft in Blue Water. The title alone conjures an image. I’ve mentioned the book before. It was first published in 1987. Three generations of women tell their story. I read it when it came out and re-read it post-stroke. There is a twist revealed in the story and I was totally taken by surprise when I first read the book. Now 30 years later, I was still surprised. I attribute it to the changes in life of those 30 years and I love that title as I see that we are yellow rafts in blue water. It helps to see the yellow raft in all things. In many ways that is an example of what the stroke has been for me. I recall the big picture but I don’t recall the details. Remember the color thing that I mentioned a couple of months ago? As I’ve said before, what happens to us affects others and vice versa. Might as well make the best of it.

Here’s a story. Matt’s birthday was a couple of days ago. It usually falls on/around the Memorial Day Weekend. That’s a holiday in the U.S. He deserves a holiday to celebrate his birthday! When I had the stroke, I retired and the credit card I have has the bill going to Matt. I ordered something on-line as a birthday gift. It came to the house in my name. He didn’t know about it. Matt got a call from the credit card fraud department about the purchase and he asked me. So I told him that it was probably something I had ordered for his birthday. That’s when he said “is it really a present if I have to pay for it” and I responded “it’s the thought that counts”. It is at this point that I bet you are smiling at all of this! You’ve probably heard the saying “tread lightly” but I’m thinking it may be time to strap on the (metaphorical) stilettos!

See? It’s the yellow raft in blue water!

“When you talk, you are only repeating what you know. But if you listen, you may learn something new.” Dalai Lama

May is the month designated to focus on strokes. Each May I try to share something new and unique about strokes, but as I was thinking about it, I thought why something new and unique? If I say finish these sentences, “Like a good neighbor …” or “the best part of waking up is …”, I bet most of us would say (or sing) a message we have heard several times. These examples might be from advertising in the United States but I would imagine there are others from many countries that invoke the same thing.

I’m going to use Spring Training in baseball as an example of the value of repetition. (It gives me another opportunity to use baseball as an example of life.) In Major League Baseball, Spring Training is a series of practices and exhibition games preceding the start of the regular season. Spring Training allows new players to try out for the roster or position spots and gives existing players time to practice prior to competitive play. In summary, Spring Training allows players time to practice new plays, review the basics and work on team camaraderie before the regular season starts. One thing I really love about this concept is just that we all benefit from reviewing the basics while we work on new things.

I love this quote from the Dalai Lama. There is a study by one of the universities where there is a “monk study” about meditation and compassion. The Dalai Lama has given several funds and supported the monks in this study. There are many ways to describe the study but basically it is about several scientists trying to understand the brain. When we think about it, most of us would be hard pressed to think of a group of people who remake their brain everyday.

I’ve said I love to read. It’s been a different experience re-reading something. (Pre and post-stroke makes one look at things differently.) I’m going to switch gears and talk about the theater. I’ve said Matt is on the board for a theater. We try to see each play a couple of times during the run of the play because I see different things each time. The first time I focus on the plot, the next time I’m much more aware of the language, or the costumes, or the scenery. The same is true of television shows. I record things I watch live and then re-watch them. (Of course my memory is so bad that I usually don’t remember watching it once before!) The same thing is true about reading. I remember a book was good but I don’t remember any of the details. So repeating gives me an opportunity to see or imagine things again.

Strokes are called “brain attacks”. May is the month set aside for stroke — to educate the public about their personal risk factors, increase awareness and celebrate survivorship. I see the stroke as two parts: Stroke Awareness and Life After a Stroke. This is FAST — a way to remember the signs of a stroke. I am aware that we all know this (or we should) but it’s a quick and easy way to be aware of strokes.

Stroke Awareness

  • F is for FACE – Does the face look even?
  • A is for ARM – Does one arm drift down
  • S is for SPEECH – Does the speech sound strange?
  • T is for TIME- Then it’s time to call 9-1-1 (or your emergency number!)

Remember a long time ago, I printed a C. S. Lewis quote that is used in the movie Shadowlands about prayer which is “It doesn’t change God, it changes me.” Whoever your God is, if you pray, this is a good example of the value of repetition. I need to be reminded of things several times and I think most people do also. So yes, I pray for the same things many times.

Do you know about a sand mandala? It ranks right up there as one of the most beautiful things I have ever seen. Several years ago we were attending a church which had a group of monks build one. We were able to go and see the process involving the creation made from colored sand. A sand mandala is ritually dismantled once it has been completed. This is done to symbolize the doctrinal belief in the transitory nature of material life. When I saw it, I did not get it! Now after this adventure, I see things very differently, I think I would get it today. It also makes me wonder, how many sand mandalas have those monks built? (Without judgement that they had done it before!)

Remember FAST

 

“If March comes in like a lion, it will go out like a lamb” English Proverb

Those who live in the Northern Hemisphere are probably familiar with this saying. With March being such a changeable month (in which we can see warm spring-like temperatures to late season snowstorms or continued rainfall) we can understand how this saying holds true in many instances. It is our hope that if March starts off stormy, it will end on a calm note. The key word is hope. However, this saying seems to be more of a rhyme or myth, rather than a true predictor! I don’t know about all that and in many ways, that’s the essence of the post-stroke adventure.

I’m also going to share in this post the Wind and the Sun from one of Aesop’s Fables. I was recently reminded of this fable and anyone who has had a similar thing happen in their life will totally get this. Here is the fable in a nutshell. The wind and the sun were disputing which was the stronger. Suddenly they saw a traveller coming down the road, and the Sun said “I see a way to decide our dispute. Whichever of us can cause that traveller to take off his cloak shall be regarded as the stronger. You begin.” So the Sun retired behind a cloud, and the Wind began to blow as hard as it could upon the traveller. But the harder he blew the more closely did the traveller wrap his cloak round him, until at last the Wind had to give up in despair. Then the Sun came out and shone in all his glory upon the traveller, who soon found it too hot to walk with his cloak on. I particularly like this fable and this is how I see it relating to hope. It’s always more meaningful when we have that ah-ha moment and do things ourselves rather than at someone else’s urging!

Here’s how I see this whole post-stroke life as it relates to these two points … if you need to change something to make it fit or work, do so! Things don’t always turn out like we expect, but we can make things work in the long run. It was the Danish existentialist philosopher Søren Kierkegaard who said “the most painful state of being is remembering the future”.

I love this fable, especially as it relates it to my post-stroke journey. Most of us would think about the wind blowing thing as our first (and obvious) option. Then as we hear this story and think about it, the sun activity makes complete sense. That is a great example of the post-stroke journey. It’s not always the first or easy option, sometimes we need to think about other ways that we can be successful and accomplish our goals.

One of my favorite songs from a movie is The Rainbow Connection from the Muppet Movie. I love the first line of the song which goes “Why are there so many songs about rainbows and what’s on the other side.” Somebody said it’s about hope, optimism and love. Last month after one of our rainstorms, there was a double rainbow in our area. Our neighbor saw it and thought he would take a picture to preserve the moment He went outside to get a better picture and the best he could get was taking a picture of the rainbow over our house! How cool is that?

I’m going to stay with songs. One of my other favorite songs is I Wish You Love. It was adapted from a French popular song Que reste-t-il de nos amours? from the 40’s. It’s been used in many movies and been covered by many artists. My favorite line of the song is “to give your heart a song to sing” and that is a great definition of hope.

I’ve said before that Matt is a captain of one of the projects by the Peninsula chapter of Rebuilding Together. There is a huge service day at the end of April that gives people an opportunity to volunteer. When we describe what they do, many people say “like Habitat for Humanity? I know them.” Not really. While there is a need for both, one is working with a blank slate and the other works with what we have. (Much like a stroke!) Rebuilding Together has a great public service announcement done by the actor Morgan Freeman where he says “what does hope look like?” I just love that because I do believe that “hope” looks different for each of us.

Sometime I mentioned an HBO special (TV) by the late comedian Robin Williams where he does a great bit on the game of golf. He explains why our swings are called strokes and how each hole has a pole which has a flag on the top as a target … it’s to give us hope, he says! We see it 18 times in a game. Once is not enough. That has been a huge learning in my post-stroke adventure. The poet Emily Dickinson wrote a poem that starts “Hope is the thing with feathers that perches in the soul — and sings the tune without the words and never stops — at all.”

What does hope look like?

“7-letter word: Coming together again for the first time”

I love those Hallmark Channel movies. I call them “feel good movies”! This is from The Irresistible Blueberry Farm. I’m sure they have a profound meaning but I’m not focused on that, they just make me feel good. Most of us have enough of a difficult time in life and it’s just an opportunity to feel good. “Coming together again for the first time” was a riddle or crossword example in this movie. I knew what the answer was immediately when I heard the clue! I know the first time many hear this, it feels very foreign. But think of a person you haven’t seen in a long time and you cross paths — all of a sudden you’re talking like no time has passed and you pick up right where you left off. Later one of the characters in the movie says “it’s like coming home again, only I never lived here. So it’s like coming home for the first time.” That is a great way to summarize the whole post-stroke adventure!

There is a woman named Mary Maxwell who did a great bit after she gave the invocation at a Caregiver of the Year dinner sponsored by one of the agencies that provides caregiving and other services to people in their homes. She has a very quick wit and as part of her talk on aging she says “the thing about old age is you don’t get a chance to practice!” The same can be said of a stroke. Remember a long time ago when I did the post on ‘act as if’? I get that most people know exactly what that means. I’m thinking that many can describe the process as ‘pretending’, but it’s more than that. There are many things that I do to remember. For the most part, it is association I use to make things work. So the idea of reunion makes sense to me.

I’ve said that the concept of reading is an important one to me. There are a few books that I’ve re-read post-stroke — mostly to check my memory. Was it as good as I remember? One of the books that I re-read is Still Life With Woodpecker by Tom Robbins. (It’s one of Matt’s ‘Good Reads’.) I love the way Robbins uses words and the visualizations he creates. One of the quotes at the end of the book is “it’s never too late to have a happy childhood”. It’s been linked to many sources of origin, but this is my reference. Now I don’t mean it from the standpoint of denial. Let’s face it, life is difficult for many. But in reality that’s a perfect saying and outlook. The book is really about how we make love stay (and also about writing the great novel). There is a line that says “we waste time looking for the perfect lover instead of creating the perfect love”. There are other lines from the book that stand out to me like “Price Charming really is a toad and the beautiful Princess has halitosis” and then there is the one that says “there are only two mantras … yum and yuk. Mine is yum.” This fits right in with my philosophy that it takes the same amount of energy for any outlook on life. As I’ve said, it all takes effort.

Last year we got an art piece by Brian Caraway called The Convenience of Forgetting. Isn’t that a great title? We got the piece through the San Jose Institute of Contemporary Art. The piece is fabulous and it’s the very notion that forgetting is a convenience that is a big deal to me. (And that’s the story with which I’m sticking!) I saw another Hallmark movie recently where they said “life is the art of drawing without an eraser”! We all have things in our life that we wish we could erase. Sometimes we can’t and so we make something out of the experience. I often call my post-stroke life, my adventure. (Turns out it’s Matt’s adventure also!) The point is, it’s about our outlook. It’s a reunion.

In the U.S., the college basketball championship happens in the month of March. It’s called March Madness and it’s a big deal. 68 teams get picked to be in the single-elimination championship initially, culminating in a championship game between the two top teams. As a family, we have always been into the whole March Madness event. I personally am not a huge college basketball fan, but my association is this … when March Madness times comes and it’s time for the championship game, the baseball season is about to start! It’s new every year. Lots of things don’t feeI familiar, but that’s a big part of being a stroke survivor. No chance to practice. I’ll just act as if it I’ve been there or done it before (especially if I’ve forgotten) so I can have that reunion.

Yum!