I’ve said that before I had the stroke one of my goals was to read all the books that had been awarded the Pulitzer Prize for Fiction. When I (re)learned to read and I remembered that goal after the stroke, I tried to keep it.

Last year’s fiction prize was a book titled All The Light We Cannot See by Anthony Doerr. I’m about half way through the book. The premise of the story is that a young woman (Marie-Laure LeBanc) loses her eyesight at age 6 due to cataracts. To compensate for her loss of sight, her father who oversees all the locks at the Museum of Natural History in Paris in 1934 devices tiny intricate models of the places she must go, so that she learns to navigate by touch and then by memory. It’s the power of the mind that I’ve talked about. Our brains are amazing! Just the title alone is great! I think of it as a tribute of how our brains adjust. (Not to mention how important it is to have somebody love us!) I think this is a great title and concept. I often comment on the fact there is so much more that we cannot see. Some animals put humans to shame with their tongues and what they can do with them. That’s compensation. Consider an animal (like a giraffe) who has a rough tongue. Maybe they don’t taste flavor much but taste texture! I loved spicy foods before so when I first had the stroke and lost my sense of taste and smell, I figured I was lost. I tell the story that when I had salsa (I knew that was spicy) my tongue would get numb! Isn’t that great? I couldn’t taste the salsa but my tongue would get numb!

A couple of years ago when I did the post on Autumn, I mentioned the succulents. A lot of the smell has come back but not as strong as it was before. While I did not lose my sight, there are a lot of adjustments we made to compensate. Matt and I had somebody from a San Francisco nursery that specializes in succulents, design the back yard and its contents with succulents. The designer was very thoughtful in his design and something is blooming year round! Succulents are perfect for me because they don’t smell but they are wonderful in their appearance. As I said before, I highly recommend succulents to other stroke survivors who want to pursue their gardening interests and have similar issues. I have learned to appreciate the beauty of succulents. My original impressions about succulents they were all like cacti! Not so. There is so much more to consider. As I’ve said before (in staying with the gardening theme), remember people who plant trees.

I think most people know I love sports, especially baseball. One of the things that I like the most is the idea of “forgetting”. (I think most sports fans hang on to a negative situation — a loss, a bad play, a bad call, you name it, more than most players.) As a fan lof baseball I’m always amazed at players who have a bad game and yet go out and play the next game as if nothing happened. It’s the forgetfulness that is impressive. There are 162 games in a standard baseball season. That’s a long season. If you think about it (like life), a single loss puts things in perspective. For his birthday, I gave Matt a sweatshirt that says “For. Ev. Er.” It’s a reference/quote in the movie The Sandlot. I love that movie. It’s the big picture that I’ve mentioned before. We live in the moment but some things we do are for the long term. It’s the light we cannot see.

I have shared a lot of these thoughts before but called it something else. I hope you are as ok with it as I am. (My memory is not as good as it was before the stroke!) I’ve noticed that lots of things have a different significance than they did before I had the stroke. I’ve said before strokes are called “brain attacks”. It’s difficult to see what happens in a brain. Some people have physical things associated with a stroke, others do not. Since I have had the stroke, I am very aware that there are things we cannot see.

I love the poetry of Emily Dickinson. It’s difficult for me to pick a favorite, but I just heard one recently that goes to the top of my list. (Even if you are not into poetry, this is very good! The title alone is fabulous.) It’s called “Forever — is composed of Nows”. How great is that? I don’t know exactly when it was published, but Emily Dickinson lived from 1803 to 1886. Just think over one hundred years ago she wrote this. I’m always amazed at things like classical music, Shakespeare plays and Emily Dickinson poetry — how they managed to survive time! A couple of years ago I did a post on the stroke renewal process being a journey (not a destination). When I heard the poem, I thought that’s one of the reasons I use the word renewal rather than recovery. I think this poem is a great description of this process. What we do matters. I would imagine that Emily Dickinson was thinking about now when she wrote this. It’s the nows that matter.

Last year the San Francisco Giants won their 3rd World Series championship in 5 years. This is a big deal. The San Francisco Giants did a trophy tour where they took the three World Series trophies to various cities and published the schedule of the dates, venues and times. People were able to take a picture with the 3 trophies. This was something I wanted to do, so we picked a venue close to our home. I did a little research and found out that at one of the venues 1/2 hour before things were to start, there were over 100 people in line. It rained the morning on the day we chose (a great sign especially if you live in California), we got there early and Matt went to check things out while I waited in the car. The venue we chose was amazing! They had designated a line for people with special needs and Matt explained our situation and they gave him a courtesy card for that line. I was able to sit in the car and wait until I thought we should go to that line. We have a great picture with the 3 trophies! I had an opinion that metal was an inanimate object with no energy. When Matt and I got back in the car we both commented on the energy that was coming off the trophies. Back to the now …. Matt hung the picture of us with the trophies by the computer which I access everyday. Yes, that championship was won in October and the picture was taken in February, but having a picture that I see everyday makes it now. There is a great special about the postseason run and it has a song by David Parsons III featuring Bronte Stiles called “Let me Love You”. I love the line “through thick and thin” …. that’s what it is all about! The Giants came from New York City in 1958 and the World Series they won in 2010 was the first one in San Francisco. As I’ve said before, those 56 years were worth waiting. When the SF Giants won the 2010 World Series they published a book called Worth the Wait. That’s a great way to view the now.

I have been faithful to the TV show American Idol over the years (pre and post stroke). I know a little about music and vocals. I especially value that skill now having had a stroke. That’s part of my now. They have announced that next year (Season 15/2016) will be the last season for the show. This year’s Idol winner was Nick Fradiani. He has said the first single he releases (his coronation song) will be a song called “Beautiful Life”. It’s about the now. I see now as a way of acknowledging what is going on currently. (Even if we don’t think it’s all good.)

A couple of weeks ago several people from my high school graduating class had a Turning 60 get together. A great reason to celebrate and have a party. That’s a great example of honoring “now”. Many people (present company included) didn’t attend for various reasons but what a fabulous example. The person who does all the organizing doesn’t even live in the town — that requires him to trust others as he delegates various tasks. (I was in a fabulous class with many wonderful and talented people.) Many are very close friends. I share this as an example of now. I totally see this as the half full/half empty glass thing. I choose to see the nows as positive. Many see turning 60 as a curse and many see it as a blessing. However you look at it — it is now. We are not going to be 60 forever (I doubt people want to be 60 forever) but they are celebrating this time. 10 years ago there was a movie called 50 First Dates. It’s a great movie about treating each day as new. It’s a great example of now! In many ways this whole perspective of now makes gratitude come to the forefront — that’s what “now” does.

This is an entire month set aside for stroke—to educate the public about their personal risk factors, increase awareness of FAST and celebrate survivorship. I see the stroke as two parts: Stroke Awareness (which most of my May posts have been) and Life After a Stroke.

Stroke Awareness — I think the best way to be aware of strokes is with F.A.S.T.:

  • 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!)

There are many other signs of a stroke but this is an easy way to be aware of strokes. Strokes are called “brain attacks” and consequently in an effort to understand what happened and learn about strokes, I have learned heaps about the brain and how it works. I am totally fascinated by the neurology of it all. If you are on Facebook, take a look at the Faces of Stroke that National Stroke Association has as their cover picture currently. They have a great program supporting this concept. I would imagine that the face of stroke is much different than we originally thought.

Life after Stroke — I’m going to tell my ‘bangs story’ again. I think it’s a funny story (important in the life after stroke part for me). I had the same hairdresser for many years before the stroke. I had read an article about her that talked about how she was more than a hairdresser. She took into account someone’s lifestyle and their face structure and made recommendations about a hair style that would fit best. I loved that. She was the one that recommended that I not have bangs and while it was a bit of a hassle growing them out, I totally got that concept. When I had the stroke, Matt contacted her and she came to the hospital. I knew she was getting ready to retire from the hair business and she told Matt to go ahead and get another hairdresser when I got home. Through recommendations of friends, I found a new hairdresser. I tell the story that I was surprised to find I had bangs when I got home from the hospital. I had taken so much effort to grow them out. I knew I didn’t have bangs before the stroke. I loved the new hairdresser. It was in my 3rd or 4th year of seeing her that I mentioned that I did not want bangs. She said “but when you came to me, you had bangs so I kept cutting them!” I love that story! Bangs are neither right or wrong. (Just like the things we do and how we do them in life after stroke.) They just are. Today I have no bangs. I totally see that as life after stroke. What works for one person may not work for another.

I’ve said that I learned to read/reread after the stroke. Between the ataxia and other things, this has been a major accomplishment for me. Now I don’t pretend to keep up with Matt (he reads voraciously) but it’s been one of my major accomplishments. We both have e-readers. Matt has a traditional Kindle and I have a Fire. I probably would prefer to read books from the library (U.S. people know about public libraries, something to add to my gratitude list), but it takes me so long to read, sometimes I need to get the electronic version so I can take my time. One can also change the font size on most books which is a huge deal. There are also tons of free e-books available. This is where I say stroke survivors can do everything they did before the stroke but it may look a little different than it used to look.

People know I love sports. They are an important part of the whole journey for me. As I’ve said before, I see that as an important part of being a stroke survivor. I believe it helps every stroke survivor to have a passion about something. (For a brief moment, something else is important!) I’m going to use college sports as my example. I’ve said before that I think one can see the rules and strategy more in college sports. If you look at college sports, think about a coach’s thought process. People typically matriculate in 4 years, then the coach has to have another strategy. (Or maybe it’s the same strategy but with different people.) That’s a great example of life after stroke! The ever changing face of it all.

“Be kind, for everyone you meet is fighting a hard battle.” Plato

I’ve been thinking about the song One Headlight by the Wallflowers. In 1998, it won for the Best Rock Song. The song was written by Jakob Dylan (Bob Dylan’s son) and he says “I tend to write with a lot of metaphors and images, so people take them literally. The song’s meaning is all in the first verse. It’s about the death of ideas”. There are many interpretations of this concept, so I’ll add mine … we are all driving with one headlight. If you are a driver, you know while it’s difficult, it’s not impossible. That’s my perspective, especially as I interact with others.

These are two stories about my favorite niece (that’s easy to say, I only have one niece), that relate to this idea. When she was real young, she came up to visit and we did an outing to the zoo. We went to see the flamingo exhibit, she looked at me and said “they’re broken!” The other story is this, one of the pets in her family is a female chihuahua. If you’ve been around that breed of dogs, you know they shake quite a bit. When you ask my niece about it, she says “it’s her inner power!” I think both of those are great examples of what we do with one headlight.

I love the announcers for the San Francisco Giants. Both Duane Kuiper and Mike Krukow have played the game of baseball professionally and I’ve learned heaps about the game listening to them. I think people who have played the game give a unique perspective of what’s happening. They paint a picture of the sport having been there that is very special. They tell you what it was like and share the things at which they are looking. Mike Krukow announced last year that he has something called inclusion-body mitosis. It’s a degenerative muscle disease that causes progressive weakening in the hands, legs and feet. An article for one of the local San Francisco papers said people around Krukow find themselves trading in their concern for laughter. He has a great sense of humor. “I cannot do stairs” he says. “I’m like Tarzan shimmying down a vine.” Now doesn’t that put a huge smile on your face? It’s a great visual image. That is a great example of one headlight!

After I had the stroke, Matt made the bathroom in our master bedroom a “wet bathroom.” He took out the standard shower and put in lots of tile. He put a bench in the bathroom and everything can get wet. There isn’t anything stored in there. It allows me the freedom to be independent. As the song says “it feels like Independence Day.” Matt also calls me Elastigirl (Helen Parr from The Incredibles). In many ways that’s a perfect metaphor! I just need to stretch a little more! I can do it even with one headlight. Here’s another thing we did in the hose.  We have no carpet, everything is either hardwood or tile. It’s easier for me to get around on those surfaces.

I’ve mentioned that Plato quote before. For some of us, it’s easy to see what that one headlight is and for others, it’s not so easy. We are all driving with one headlight! Here’s a line from the song and it emphasizes the importance of others (real or imagined imagined) in this journey. “But me and Cinderella, we put it all together, we can drive it home, with one headlight.”

“This little light of mine ……”

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