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Victory
over Stroke - An Amazing Journey
Most of the things I will share with
you have come to me through some very difficult lessons. However, I am writing here today to proclaim loud and clear that
there is life after stroke! And, depending on how you view your world, life after
stroke can quite possibly be better than anything you have ever experienced. The writing that follows is a revised and condensed
version of a speech I gave as the keynote speaker for the Peninsula Stroke Association in Palo Alto, California.
Art has always played an important role in my life from coloring in coloring books with my grandmother
as
a child, to becoming a free lance artist, a fashion designer, teaching art in public high school, and eventually, after my stroke, getting a master's degree and becoming an academic counselor and instructor
at Cabrillo College in Aptos, CA. As I traveled my path through my life in young
adulthood, I had no idea of the hardship, pain, and suffering that I would face or that my drawing and painting would play
such a profound positive and life saving role in my personal struggle to recover from a devastating left hemisphere brain-stem
stroke, which I experienced four days after my 36th birthday. I have often thought, if I were to write a book about
my experiences, that I would call this book 'Happy Birthday Sweet 36 - A Journey of Self Discovery' by Casey Shannon.
It has been a few years ago now that I went to see an art exhibit by Yoko Ono at
the San Francisco Museum of Modern Art. Yoko is a conceptual artist where the idea or instructions for painting are more important
than the visual result. Her art focuses on experience. At the exhibit, I realized she was not the mean lady that broke up
the Beatles but an incredible talent in her own right. Her entire exhibit was so exquisite and thought provoking that it got
me thinking (again) about life, it's meaning, and where I had been on my journey. Yoko writes beautiful Japanese Koans, which
are words of wisdom and I purchased her book in the museum bookstore. Yoko's book is called Grapefruit, a book of instructions
and drawings originally published in 1964.
On
one of the pages, I found these instructions.
Clock Piece
Select a clock.
Set it on time.
You may rewind the clock but never reset it.
Call it your life clock.
Live accordingly.
For me, Yoko's words struck home
like a straight arrow piercing my heart and reminded me of one of the primary lessons I learned from experiencing my stroke.
We select our life, plan it, we can learn our lessons, recharge and grow, if we want to, but we can never change the past and start the life over. This is our life. Live accordingly. I believe
we can be conceptual artists for our life after stroke, where the life instructions and resulting learning are more important than the physical result, which in many
cases is less than desirable.
It
is very interesting to me how the universe can tell us things, (insights, premonitions, warnings), if we only take the time to listen. I can't tell you how many times I have heard stroke survivors
say, "if I only listened to my body, if I only
headed the warnings, if only I hadn't pushed myself so hard, if only I hadn't stressed out so much, if only I didn't smoke,
if only, if only,..........!" Well, that time has passed. This is now. And now the only question
remaining is, "So you had a stroke,
what are you going to do about it?" Feel sorry for yourself and become a victim, or as Yoko Ono says, rewind the clock.
My stroke happened in October of 1983.
At the time, I was living in Southern California in Huntington Beach. I was happily married, or so I thought.
My beautiful daughter, Kelly, was
13 and just starting high school as a freshman. I was having so much fun driving her and her friends to the high school football games on the week-ends. I was teaching
art at Santa Ana Valley
High School. Valley HS was an inner city, low income, multi-cultural
HS and the students were not easy to teach. I remember my job as being pretty stressful but I was succeeding because I was
teaching art (my heart's desire) and making a difference in my student's lives. I occasionally sold a piece of
my personal artwork. I was an avid snow skier. During summer vacations, my family
and I would travel. We went to Mexico
a lot. Life was good. I was riding high and on top of the world, or so I thought. Please don't get me wrong here. This was
not Donna Reed's life by any means. I thought my life was great. There were some underlying issues in my life that I chose
not to recognize,
as we all do sometimes.
Then late one chilly October night my
stroke occurred. It hit hard, it was quick and
it was deadly. I can recall that night in my mind as if it happened yesterday,
instead of all those years ago. I was up late working on a presentation I was going to present to my peers at a convention
of the Orange County Art Educators Association. When I finally crawled into bed, I felt OK but I was very tired. A few hours
latter, I remember being woken up by a strange burning sensation across the bridge of my nose. I sat straight up in bed and
woke my husband to tell him that
I didn't feel so good. He said, "Go back to sleep, you'll be alright". The sensation continued. I sat up again almost immediately and said, "I really don't feel so
good". The words came out fine in my head but my husband said, "I can't understand you", and began dressing to take me to
the hospital.
I remember sitting on the side of the bed trying to plead with him not
to take me. I have always hated doctors and hospitals. I didn't “get” that I was having a stroke but luckily he
did! I was trying to plead with my hands but my right arm would not work. Then I suddenly felt sick and tried to get up to
go to the bathroom and vomit.
However, I couldn't get up because my right side would not cooperate at all. So, I vomited there at the side of the bed. Not
very attractive and not something
I would have wanted to do in front of my husband. I remember him carrying me to our jeep and strapping me in with the seat
belt. By the time we arrived
at the hospital, which was only about 10 minutes away, I was slumped in the seat and profusely drooling.
I was taken to the emergency room where
it seemed it took doctors and staff a really long time to figure out what was happening to me. Because I couldn't speak, doctors
assumed I was not of present mind and did not communicate with me personally. I was moved to the Intensive Care Unit and remained
there for about a week. At this
point, all I could do was roll my eyes. The right side of my body was completely paralyzed and my left side in total shock.
I couldn't breathe on my own, open my mouth and wiggle my tongue, or swallow. They fitted me with a feeding tube. My vision
was upside down. And I remember watching it right itself over about 3 or 4 days. Slowly, slowly, my vision clicked like a
clock counter clockwise until it had righted itself again. That was very strange! Man, I thought I was hallucinating and I
was very scared. That first night in ICU, the woman next to me died. And I thought to myself, "This must be really serious.
I must be dying here!" It wasn't until the next day when they finally let my husband into ICU to see me that I was told what was going on. He looked into
my eyes and realized I was
in my body. With tears in his eyes, he said, "You know everything that is going on don't you?" When I nodded my head, he told
me that I had a stroke. Well, that information did not really help me. You see, I am an art major and I slept through
every health class I ever had so I didn't really know what a stroke was. Besides, didn't strokes just happen to old people in their 90's?
The prognosis for my recovery was not
good. I was told I might recover a little movement
but probably would not walk or talk normally again. I would not be able to regain the use of my right arm and I certainly
would not be able to teach again. I guess we are told the worst so if we make just some progress we will be happy with that.
I was devastated. I was scared, angry, depressed, and would cry for days on end. I was hysterical. When I got home, I remember
crying so long and loud one day
that the neighbors from two houses down actually came to see what was going on! Anyway, I was eventually moved to a regular
room in the hospital and then to Long Beach Memorial Hospital where they have a special rehabilitation unit.
I spent a little over a month and a
half in the rehab unit where I underwent physical, occupational, and speech therapy. After a month and a half I begged to
go home. I couldn't speak yet but I had a little word processing machine attached to my wheelchair. To my relief, they let
me go, if my husband promised to bring me everyday for therapy. This probably was not the best thing for me but I did it anyway.
I was a bit nasty and feisty. I refused counseling, I refused to wear my AFO (leg brace) and refused other assistance because
I thought, 'Hey, I don't need your help, I can do this on my own". Well, that attitude was really stupid. When you have a stroke, you need all the help you can get. At
that time, I was just sure that the whole thing would go away by the time I was 40! Surprise! Surprise!
I went through the beginnings of my
recovery kicking and screaming. I was not like Ram Dass. You know, Richard Alpert, who wrote 'Be Here Now' in 1971, and 'Still
Here', in 2000, after his stroke. Anyway, Ram Dass drew upon the strength of his faith and says he tackled his devastating stroke and the challenge of recovery
by being a silent witness to what was happening to him and by not being a victim. When I read that, I thought, "Come on Ram
Dass, are you kiddin' me?" Silent
witness? Please! In the beginning of my recovery, I was victim all the way and inside screaming bloody murder! I spent months in rehab
at the hospital until my insurance ran out and then years doing rehab on my own at home.
It's interesting how the universe likes
to play tricks on us. When something devastating happens to us in life, it's like the flood gates are swung wide open and
all hell breaks lose. Other areas of your life begin to fall apart as well. Marriage difficulties, financial upheaval, job loss, you name it! Well, I encountered
it all! My husband left and Kelly and I had to make it alone. Without money coming
in, we could not pay rent or utilities and we were evicted from our home. We ended up on food stamps and welfare. We faced many challenges. Actually, we
went through several years of hell until my teaching disability payments finally started. As the American Indians would say,
"we walked the long red
road and entered the dark shadow of the night". And thru it all we were able to laugh. Well, most of the time. I am a firm believer in the healing power of laughter.
My daughter is a fun loving spirit. She has a great sense of humor and no matter how crazy things got or what predicaments
we found ourselves in Kelly would find something funny in the situation. She would always do or say something hilarious and
she would get us laughing.
One time Kelly took me to a dance club. I think it was in Newport
Beach. Kelly knows how much I had loved to dance before my stroke. I was sitting there
dancing in a chair. I was getting down girl! All of a sudden, Kelly and a girlfriend of hers drag this chair out into the
middle of the dance floor to the odd and surprised looks of the people dancing. Kelly says to the other people on the dance floor, "Mom's cool,
just dance around the chair,
she'll be fine, she likes it!" If you haven't read The Healing Power of Humor by Allen Klien, I highly recommend it.
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| Healing Power of Humor by Allen Klien |
When you experience a stroke, you undergo
a tremendous sense of loss spiritually, mentally, and physically. Stroke swiftly robs you of your identity, your sense of
who you think you are. I felt I was no longer a mother, a teacher, an artist, a skier and on and on. And I felt, if I was
no longer these things, then who the hell was I? I found my stroke eventually humbled me to who I really was, however, I first
had to feel the pain. I found it difficult to not constantly long for the woman I used to be.
A positive practice that is essential
to stroke recovery is to resist the urge to constantly compare ourselves after stroke to who we were before stroke. Ram Dass
writes in his book Still Here "The stroke was like a samurai sword, cutting apart the two halves of my life. It was a demarcation
between two stages. In a way,
it's been like having two lives: this is me and that was "him". Seeing it that way has been an important part of my recovery, part of the way I have worked
with the stroke. Seeing it that way saves me from the suffering of making comparisons, of thinking about the things I used to do but can't do anymore because of the
paralysis. In my past life, I had an MG with a stick shift, I had golf clubs, I had a cello. Now, I don't have any use for
those things. New life!" I used to drive a TR4 with a stick shift, I used to Snow ski. Now,
I also have a new life!
I have found that it is important to
love ourselves again, to be accepting and tolerant, and be open to what our lives are now. To help me with this concept, I
learned about wabi-sabi, the art of imperfection. Wabi-sabi is the Japanese tradition of celebrating the beauty in what's
flawed or worn. It offers an inspiring way to look at your whole life. To discover wabi-sabi is to see the singular beauty
in something that may first look decrepit and ugly. Bringing wabi-sabi into your life requires a mind quiet enough to appreciate
muted beauty, find courage not to fear, and a willingness to accept things the way they are. Wabi-sabi depends on the ability
to slow down, to shift the balance from doing to being, to appreciating rather than perfecting. Wabi-sabi can be adopted as
a way of seeing and being in the world.
To acquire wabi-sabi, I began practicing
meditation for stress reduction. I eventually started doing a lot of things my intuition told me was the right thing for me
to do at different times during my recovery such as: message, visualization, working out at a gym, acupuncture, yoga, and of course, drawing. Recovery, by the
way, is an on going thing. I will be in recovery the rest of my life. The important thing is to always follow your heart, your truth, and remain open to what comes your way. Once in a while, I still take a trip down that now familiar
long red road and visit those dark shadows, but for the most part, I focus on other things, maintain a positive attitude and
remember what I've learned.
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| Wabi Sabi for Artists, Designers, Poets, and Philosophers by Leonard Koren |
In recovery, it is important to make
the shift from what you have lost because of the stroke, to what can I do with this experience now? It is important to think
about, what lessons am I learning here? How will this experience help me grow as a human being? Why am I on this path? If we choose to look at our experience in this way, having a stroke can be a profound spiritual
journey. I am who I am today because of my stroke. I am a better person
and I would not change a thing. I have learned what is truly important in life. I have my priorities straight now. At the
top of the list for me would be the love of family and friends. I have learned to be more tolerant and compassionate toward
myself, and others. I have learned to appreciate the little things like hugging a tree or watching a spider build it's web.
I believe my stroke happened for a reason. Knowing what I know now, if
someone had told me ahead of time that I would have a stroke, I would say "Bring it on, I'm ready!" I think a lot of folks who
have faced disabilities or
extreme hardship would feel the same way.
As I mentioned earlier, art has always
been a part of my life. As soon as I could sit for more than just a minute in my wheelchair, I began practicing holding a
pencil in my left hand and started doodling and scribbling and such. I intuitively knew that, for me, I needed to get drawing
again. And fast, if I was going to-save myself.
I learned about Fredrick Perls, the
existentialist, in graduate school. He theorizes that every mark we make on paper, every color we use, is an extension
of ourselves, our thoughts and our feelings. I must have known this, for I began drawing with a vengeance. I drew everyday at least 5 drawings a day. I incorporated it into my home rehab routine. I am not saying
drawing is for everyone. It is important for you to listen to your truth and find what feels right for you. However, I have
found drawing to be a profound healing tool. There is a tremendous power in the act of creative expression. I found it to
be inspiring and it improved my self-esteem and self-worth. During those first dark days of recovery, my art and my creative
expression told me 'never give up!' I
am pleased to report that after years of personal struggle and determination, I walk, I talk, I teach, and I paint. However,
I did not regain the use of my dominant right hand and arm.
My heartfelt mission is to tell everyone on the planet that there is hope and life after
stroke or any traumatic life-altering experience. I want to inspire others not only with my words but also with my art.
Click on Drawings to view some of my pre-stroke art.
Click on Recovery Art to view some of my post-stroke recovery art.
Click on Meet the Artist to read about my path as an artist and Instructor.
Be sure to visit my Portfolio of Galleries to view my current and elegant Sumi-e paintings. I have several beautiful galleries here.
Be well,
Casey Shannon
Artist - Instructor - Stroke Survivor
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