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 ……”

The poet Lorie Hill states in one of her poems that March roars in like a lion and goes out like a lamb. I don’t know if it’s a U.S. thing or a northern hemisphere thing, but this is how I was raised. It’s fitting that my March post is about transition.

A lot of people ask me why I’m such a big baseball fan and there are several reasons. But for me, it’s a very social thing. It connects me to something else (other than the stroke) and lets me share something with others. Even people who aren’t big baseball fans get that it is important. The main reason I love baseball is a childhood thing which always connects me to that time and place. I am a big fan of March Madness. It is the college basketball championship tournament in the U.S. Now you may be asking yourself what does basketball have to do with baseball? Transition! I know when March Madness comes around that it’s the start of the baseball season. We have Stanford baseball season tickets (college) and that way I can start watching live baseball in February.

I’ve said before that the house cleaners come every other Tuesday. I have to put it in the calendar because I can’t remember which Tuesday it is. Before they come, we clean for the cleaners. We actually tidy up because I don’t want them spending their time doing that. Whenever we do something, I am aware that it affects the cleaning. There are somethings that I just make a decision that I’ll tidy up before the cleaners come and other things that I just put away as I use them. We also have somebody else clean to make sure that cleaning is done regularly for me as a stroke survivor and something we can do for Matt as the caregiver. A clean house is important for anybody especially a stroke survivor. It says a lot about the value of a person.

I’ve said when I had the stroke, I lost my sense of taste and smell and I was thrilled when the taste and smell of lemons came back. I have been disappointed that I can’t taste things when I can’t see them. Many spices are “wasted” on me. Recently Matt went to a cooking class and the instructor said a little lemon zest enhances the flavor of many pastas and people can’t see it. The last time Matt made some pasta, that’s what he did. I could smell the lemon zest! After 9 1/2 years, Matt is still mindful of that and it is a part of our lives. That is an example of the whole thing about transitions, our actions are like spices, we don’t always see them!

It was the author Mark Twain who said ‘everybody talks about the weather, but nobody does anything about it’. There are just somethings beyond our control. As transition for various aspects of weather, we dress accordingly. There are some things we wear for summer and somethings we wear just for winter. The whole idea of a wardrobe for the various seasons is a great start to the process!

Things don’t have to change for a transition, maybe just our description or perspective. I had many migraines before the stroke. The dark is best for a migraine. I just got used to the dark and I no longer have migraines. Matt calls me a mole. Before the stroke I would say dark is best for a migraine, now I just like it. I’ve used this quote by C.S. Lewis on prayer. (I think it’s a great example of transition.) “It doesn’t change God, it changes me.”

For the last three years, I watched a TV show on HBO titled The Newsroom. It was well written. On the last episode, they did the Tom T. Hall song That’s How I Got To Memphis. It’s a great song and not really about Memphis but rather how he got there and we can take it as how any of us get to the place where we currently are. I think it’s about the fact of what are we going to do now? I’ve said before that I spent a lot of time trying to figure out why I had the stroke. (I never got an answer that I liked!) May is Stroke Awareness month. I see that as very different than prevention. The source of my stroke was an AVM. It was congenital. I had it at birth. The fact that it burst when I was 49 is phenomenal! That’s the thing about transitions. We have to always be mindful of things. I can summarize all my transitions from the last few years in a single sentence. Whatever I’m supposed to learn from this adventure, I’m going to because I am not repeating this!

“It’s all therapy.”  Matt Sorgenfei
This is Matt’s saying and I totally agree.  I think this is great!  This is how I view things.  I’m calling this post the big picture because I feel things are bigger and more than we originally think.  It’s not just about right now but beyond that.  As I’ve said before, consider people who plant fruit trees.  It takes me a long time to read these days but before I had the stroke I had a goal to read all the books that were awarded the Pulitzer Prize for Fiction.  I still have that goal.  By the way it was originally called the Pulitzer Prize for the Novel and was inaugurated in 1917.   The award last year was The Goldfinch by Donna Pratt.  I started the book and at one point decided that I didn’t like it as I didn’t like the characters (they weren’t very compelling and certainly not anybody I would have as friends) but it had been awarded the Pulitzer Prize.  Here’s an insight I got about myself. I was stubborn before the stroke and that didn’t change!  I started the book so I was going to finish it.  In the end, I’m glad I did.  It was a great learning for me about friendship and how something that happens to one affects our entire life.  That’s the big picture.  It wasn’t just about the characters for me but about the story.   (There are some books that I just don’t finish.)
Those who know about Cirque Du Soleil will get this  My favorite show is Saltimbanco.  It ran from 1992 to 2006.  It was described as a celebration of life.  Its creators described it as an antidote to the violence and despair prevalent in the 20th century.  English has lost the word ‘saltimbank’ from current usage but it is still familiar in Spanish as ‘saltimbanco’ and in French as ‘saltimbanque’ or ‘street acrobat’ or ‘entertainer’.  According to the company’s website the word ‘saltimbanco’ comes from the Italian “saltare en banco” which means to jump on a bench.  The etymology of the word reflects its acrobatic associations.  A ‘salto’ is a somersault in Italian; ‘banco’ in this context is a trestle holding a board, set up as a temporary stage for open-air performers.  Saltimbanchi were those who performed somersaults on a temporary platform — wandering acrobats, performing in the open air, the platform giving their audience a better view.   (Not to mention that it helps to get the big picture when one is on a platform or bench!)  The Cirque du Soleil performers/artists have flair, dance skills and acting skills.  All the shows are a fusion of the worlds.  Performers have to express themselves without words and they go into a databank of talent.  The shows are fabulous as one sees how being part of a team is an important aspect for each artist (all of them are athletic).
 When it comes to life since the stroke, I’m going to use Matt’s comment — everything is therapy (and everything is related).  Everything I do (chores, going to sporting events, visiting with people, playing games, any social event, etc) are all therapy.  Once I had a goal in Speech Therapy to improve speaking on the phone — something many of us do frequently, when one doesn’t speak or speech is compromised, it becomes a big deal!  (How we breathe when we speak and where we breathe.)  Now every time I speak on phone, I think about all of that.  I did say to the therapist at one point, “I know what I’m saying!”  She just smiled and said “I know” but does everybody else?  Here’s a story I told my Physical Therapist and my Pilates Instructor (also a Physical Therapist).  The salon where I go for haircuts has uniquely (I think) these beds or tables where people lie on while they get their hair washed before a cut.  This fall when I was there, after my hair washing, the hairdresser told me she was done and for me to get up.  So I did.  She said “wow, your core is really strong!  Most people can’t get up or use their arms extensively.”  We have been working on my core strength!
Matt is on the Board for the Magic Theater.  We go to see each play a couple of times.  (I see something new with each viewing!)  I love the theater.   Before each play starts, they have a reading of the script with the actors, the director talks about the play and the set designer describes what they are doing with the scenery.  It’s a fabulous experience,  We take advantage of Matt being on the Board and do more things with the theater.  I consider this “big picture”!  It’s about being present with everything in life — sometimes we use that awareness right away and sometimes it goes to an awareness databank for use later.

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