“The basic fact is that all sentient beings, particularly human beings, want happiness and do not want pain and suffering.” Dalai Lama

August 15, 2017 will mark 12 years since I had my bleeding stroke. I’m sure lots are saying 12 years! Time flies when you’re having fun. This is a big deal because I have exceeded the expected longevity from my bleeding stroke. Rightfully, this is a Ta Da!

The quote above is from a book called The Art of Living (A Guide to Contentment, Joy and Fulfillment) by His Holiness the XVI Dalai Lama. After I finished the book, I went on-line to do some more research on it. I was surprised to find so many postings about the fabulous pictures in the book. So I went back to look at the pictures. I was so focused on the text that I completely missed the pictures! Now isn’t that a metaphor for life?

There is a Hallmark movie called Moonlight in Vermont (you can see most of them on the computer on YouTube) and a woman says she realizes that it’s not the place but the people and memories that make it a great experience. I like that.

I often ask others how they are doing. I hear “I have good days and not so good days”. This, I totally get. Many people don’t see those “not so good days” … I’m a great actor and for the most part, I figure people have their own things upon which to focus. Matt and I don’t do as much as we used to. We still try to do special things. Matt is great about asking me what I want to do and keenly aware of the things that will provide a fabulous experience. My best time is in the morning, I’m pretty useless in the evenings. There was one day that I went to bed at 8:30 pm because I was so tired. The next morning, Matt brought me my tea in bed and by 8:15 I figured that I better get up because I didn’t want to be in bed 12 hours! I found recently a piece that I wrote in high school that contained the line “sometimes you eat the bear and sometimes the bear eats you”. I now get it!

One of my favorite pieces of jewelry is one made by a talented and creative friend (Elizabeth Weaver). It is a lariat necklace A lariat necklace does not have a clasp or hook at the back of the neck like most necklaces. Instead, you fasten a lariat necklace by tying a knot it in the jewelry itself. Lariats are often described as a lasso. It is a single, continuous strand of jewelry. It’s great for me because of the ataxia. It’s a beautiful piece with a lot of my favorite colors and I can wear it with various things. The reason I point this out is to see that things have differed but it’s the end result that matters. I’ve told a few people this. We went to see the movie La La Land in the theater when it first came out. I had heard an interview with Ryan Gosling where he talked about playing the piano. He said he knew how to play the piano but he took lessons to learn to play jazz piano. I doubt many of us would know the difference!

We have friends who live just north of San Francisco in a cohousing community of about 30 households. We went to spend a weekend with them about a year after I had the stroke. I think I was using the quad canes the first time I went up there. One of the things that struck me most was how the children were curious about me and my status and so they asked Matt and me questions without judgement and were very talkative. The whole experience was eye-opening.

The SF Giants are having a rough year in baseball. Lots of people are upset and looking for a reason for their standing in the division. I’m probably not as upset as others. (I’ve had lots of experience with this!) As I look at it, one can do everything right and still have a difficult time. Just like with a stroke!

In the book the Tibetan Book of Living and Dying, the XIV Dalai Lama says “As a Buddhist, I view death as a normal process, a reality that I accept will occur as long as I remain in this earthly existence. Knowing that I cannot escape it, I see no point in worrying about it. I tend to think of death as being like changing your clothes when they are old and worn out, rather than as some final end. Yet death is unpredictable. We do not know when or how it will take place. So it is only sensible to take certain precautions before it actually happens. Naturally, most of us would like to die a peaceful death, but it is also clear that we cannot hope to die peacefully if our lives have been full of violence, or if our minds have mostly been agitated by emotions like anger, attachment, or fear. So if we wish to die well, we must learn how to live well: Hoping for a peaceful death, we must cultivate peace in our mind, and in our way of life.”

That’s what I’m trying to do … cultivate peace in my mind.

 

“How much wood could a woodchuck chuck, if a woodchuck could chuck wood?” Mother Goose

My mother was very good at tongue twisters. I remember when I got to do some in Speech Therapy. I read them, but it was a good start!

I’m sure most people have heard the saying about the light at the end of the tunnel. Some say it’s a train headed right at us and I just saw a sign that stated “due to recent budget cuts, the light at the end of the tunnel has been turned off”. It’s about our perspective!

Sometime ago, Matt and I saw a play (can’t even remember the title) where a woman is talking about a dream she had where she is fishing. She is having a difficult time catching anything when in the distance she spots a fish. While she is considering ways to catch it, the fish swims over to her, comes out of the water and says clearly to her “fish somewhere else”. Where are you casting your line?

Do you know the saying “if at first you don’t succeed, try, try again”? Notice it doesn’t say try the same thing over? Fish somewhere else, but keep fishing!

When Matt and I got married (September 1993), we put disposable cameras on each table for the reception since we figured it would be difficult for the photographer to get all the candid photos of guests and the event. Disposable cameras were the rage then. We searched diligently for a place that could expose the film (cameras required film in those days) and provide the pictures overnight as we had several people over the next day and we thought it would be a treat to see the pictures. Go figure? Today everybody has a digital camera on their cell phone and we go to weddings and other events where they make announcements about an acceptable time to take pictures. The whole concept of photos has changed! We used to use film which was exposed and the process of pictures was costly and timely. It required us to think about what we wanted as pictures. I used to say of people who took many pictures on vacation that they had to wait to get their pictures to see if they had a good time. Developing the film for pictures could be a lengthy process. Today things have really changed. A big deal for me is the whole experience. Having pictures available lets many have the experience with us. Now that whole example is to show you that perspective does make a difference. For me on this, it broadens the ‘those who experience’ circle.

I think I mentioned before that when I came home after the stroke, I had a different version of the house in my mind. We had lived here for about 15 years, but walls and rooms were different than I remembered! I mentioned this to a friend who said “it’s because your perspective has changed”. When I started using the walker to get around then I could see the layout. In many ways I see perspective like brain plasticity. We can change it and we can make use of the changes.

I shared this with Matt a couple of days ago. People know I’m a huge San Francisco Giants fan. They are having a rough year. Someone posted a picture of the standings for their division on Facebook. They are in last place in their division. Each league has three divisions. The picture was posted upside down and the post was “Look, the Giants are in first place!!”

I said that Matt is on the Board for the Magic Theatre in San Francisco. One of the many things I love about them is that they do new plays. You are not going to go there to see a well known play. I typically see each play twice during the run. There is not a bad seat in the house. There are three sections (left, right and center stage). When I had my stroke, Matt changed our seats to more accessible ones. Those happen to be left stage, front row. I love those seats as it has the benefit for me of focusing on the dialogue. As Matt is on the Board, we go to opening night of the play. It is a very different experience. That is the evening when press is present and the whole atmosphere is different. We usually sit in the center stage section for that. Because I know the plot, that allows me to focus on the scenery and the relationship among the actors. The perspective is very different. (It’s like seeing a brand new play!)

That Mother Goose quote/saying above ends “as much wood as a woodchuck could chuck, if a woodchuck could chuck wood.”

 

“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