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MY
PERSONAL JOURNEY WITH ATAXIA:
RELEASING THE GRIP, THROWING AWAY
THE LABEL.
My journey "out
of the darkness" began with my frustration with what and who I had
become secondary to my diagnosis of Spinocerebellar Ataxia (SCA-14),
the resulting symptoms I exhibited and the desire to regain some of
my “normal”. I was also fed up with the perception of our
society in how I was viewed, referred to and looked upon. Like
many others I became very self conscious of myself and began the
process of “self imposed social isolation”.
I became an
embarrassment to myself.
With my move to
Florida in Jan. 2004 I unknowingly began the process of reversing
some of my ataxic movements. I moved into a neighborhood where
everything is flat. I wanted to go for walks, but worried
about how my new neighbors might react to this clumsy guy walking
around their neighborhood? In an attempt to limit my
“exposure” I started walking at night with the aid of the street
lights.
It was risky but I was determined.
(Walking at
night can be very dangerous for us. We loose a good portion of
our visual perception and therefore are more apt to stumble and
fall.)
My walks
gradually became
longer and my speed increased. Over time I noted that I didn’t
have to concentrate as hard to stay on the sidewalk. My gait
was becoming a little narrower. I felt some confidence
returning and it was great.
What a rush! I was like a
little kid.
Around this
time some of my new friends asked me to join them biking; the twenty
miles at a time type of riding. A glimpse of something normal
entered my mind for a couple seconds then the SCA began to speak.
“I’d love to, but I can’t ride a bike anymore.” “You could
ride a trike”, one of them said. “A recumbent trike would be
perfect for you”, he added. With that conversation a search
for a recumbent trike began and took about two months to complete.
I finally found the one I liked and began riding it almost everyday.
Each time I pushed myself to go longer and farther and I was soon
averaging 60 miles per week.
Not only did
the trike give me a release from the limitations of my disorder with
the freedom of mobility it provided, it also forced me to start
working at achieving better balance. I had to practice the art
of getting on and off the trike without falling. This proved
to be quite a challenge as it sits very low to the ground.
Every move had to be choreographed. I had to learn how to sit
and stand with little support. In the beginning months this
proved to be very difficult, especially at the end of a ride.
I found that I had to sit on the trike and rest for quite awhile
before attempting to stand. When I rushed the process, I’d
fall over out of the trike, and hope no one was watching. I
either did it the correct way or paid the price in pride, cuts and
bruises.
I slowly began
feeling more normal. The trike had provided me with a safe
mode of exercise, a socialization venue, forced me to address my
balance issues and increased my mobility. Not only was I
interacting with “normal” people on their turf, I myself was also
normal while riding that trike! (Helmet, locking pedals to
shoes and mirrors highly recommended.) “I’m on a “tricycle”, but
loving the freedom.” It was great, I was feeling better than I
had in years and I was having fun again. Now I wanted more!
Why a “tricycle”? The three
wheels provide for a very stable platform; the rider doesn’t have to
balance it as you do a bicycle. And add on the special biker
shoes which lock into the pedals and stabilize your feet; another
worry gone! The end result is safety and comfort. Once
you get down into the very comfortable recumbent seat, attach your
shoes to the pedals, you become a normal rider just like the rest of
them. And, you also don’t have to unlock your feet from the
pedals when you come to a stop like the people on a bicycle have to
do. Further, you won’t have the nagging discomfort of the seat
saddle irritation in your groin area. Hence, no “saddle sores”
because you are sitting in your “recliner”. Ah…how nice…and
add a cushion for more comfort if you wish! You get the
benefit of the exercise without the neck and back strains that many
bicyclists must deal with.
Enter another
friend at the right time. I met him when I had first moved to
Florida and we interacted quite a bit since we worked for the same
employer. Thus, he had witnessed my clumsiness and the
improvements I was making for myself through increased walking and
trike riding. One afternoon we were talking about dancing and
I remarked how I would love to have that ability, but – “I could
never do something like that because of my condition.” “Why
not”, he asked? “You need to go see the dance instructor I
took lessons from. She can help you”, he said, “you should go
talk to her.” I half heartedly laughed and said, “Ya right –
me dancing!” To which he replied, “I’m serious! She can
help you. Go out to her studio.”
I was intrigued
with the thought of the slight possibility that I could benefit from
dancing, but could not visualize how I could ever hope to “dance”.
I had never really danced before, or entertained the notion that I
could ever dance, and brushed off his advice for a few months.
Then one afternoon he questioned if I had ever gone to see that
dance instructor to which I replied no. I had all sorts of
excuses and reasons why I didn’t and couldn’t. “But how I wish
I could”, I complained; to which he challenged me. “Meet me at
a local dance this weekend and see some of it for yourself.
Give yourself a chance.” So I reluctantly agreed on the
outside, while an excited expectation mingled with a fear of the
unknown on the inside.
Two days later,
I went to that dance and was the typical wall flower. However,
I was soaking up every moment while studying the dancer’s movements.
How I wished I had the ability to move like all those “normal”
people on that dance floor. Everyone was smiling and having a
wonderful time. I felt like I was looking through a window at
a great party. I was clumsy and they moved so easily. I wanted
what they were experiencing, but couldn’t understand how it could
ever happen. How could I ever expect to fit into their world –
and dance? It was a good night, but another reminder of what I
couldn’t do and couldn’t attain. I was intrigued at the
thought and depressed at the reality of my condition. How nice
it would be…but I can’t!
The following
day my dancing friend approached me and asked what my thoughts were
of the dance the night before. I told him how great it was,
how I would love to move like that, but “I have to face the facts…I
can’t because of my neurological condition.” “I think you’re
wrong,” he replied, “go see that instructor!” I procrastinated
while he was persistent over the next couple of weeks. He
continued to recommend the same dance instructor on multiple
occasions. Finally, I allowed a sliver of hope to combine with
his resolve and I finally entered a dance studio for the first time
in my life. There I stood with a mixture of emotions, peering
at the dance floor upon which the instructor and a student
moved in unison, music filling my senses, struggling with the
internal "can and cannot...well...maybe I should...", then the
instructor walked up to me with a pleasant greeting.
It was a moment that would ultimately provide me with what I’ve been
wishing for. “Just let me be normal; that’s all I want.”
Over the next
two years I spent many, many hours working on the same basic
movements which my instructor led me through. We had to learn
as we went for she had never taught someone with a condition like
mine but had the determination that we could do it. We began with
some very basic movements then had to figure out how I could learn
them without falling, tipping or swaying. It was
overwhelmingly frustrating at times, but also mixed with moments of joy and
an increasingly more frequent, “I
did it”! The puzzle pieces started to align themselves as the
beginning footwork began to become recognizable as true dance steps.
With each gain
there came another obstacle to hurdle. How do we make me do
that and make it look right? To dance backwards, sideways,
move with my feet narrowly spaced apart, get up on the ball of my
foot and pivot, stop my movement in place without swaying, lead the
lady and not allow her to pull or push me off balance, step with
unison across the floor with someone directly in front of me….. and
trust. With each gain in my ability to perform a new dance
step sequence, there also followed another problem with my disorder
that we had to work with in order to combine everything together.
And she wouldn’t allow me to “cheat” or use my condition as an
excuse. That proved to be very valuable as I progressed.
Gradually the
steps became a recognizable pattern and then a dance routine
emerged. The Foxtrot, Waltz, Cha Cha, Rhumba, Swing, Salsa, Tango and Merengue became recognizable and I felt great. I was dancing
and enjoying every minute of it. There came performances
within the studio; then performances out in front of the public who
didn’t know of my diagnosis. The joy just flowed from within
as I continued with this new lifestyle.
And there came
another unexpected joy as the press and other people in the
community became aware of what I had achieved through dance. I
became an example of what anyone could achieve if they would only believe
in the possibility, then commit themselves to trying. I was
now referred to as an inspiration to others and was approached by
people who were amazed at my story because to them I was moving
around like “everyone else”. That’s when it really hit me for
the first time. In conjunction with my previous activities,
combined with the dedicated guidance of my dance instructor, I had
reconditioned myself, SCA and all its symptoms, into someone who
appeared “normal”. It was at that moment in my new life when I
realized that I had accomplished my goal and had received my wish of
“just let me be normal.” It was a profoundly humbling moment
and never to be forgotten. Still, I am simply me with SCA
trying to find where I fit; trying to find something meaningful
amidst this diagnosis and the cascading repercussions.
I can
dance! I have achieved something so many people kept telling me I could
not possibly do; with me being my biggest doubter. More importantly though, I have
achieved something I had convinced myself that I couldn’t do.
Finally...finally, I had broken through the muck within my own thought processes to
allow myself to give myself a chance. It was overwhelming when
this finally sunk in. I remember the moment like it was
yesterday. You can only imagine how powerful that moment was –
and many of you can have it for yourselves as well.
That studio,
those people you had become a fantastic network of supporting family
and friends, provided me with the tools I required to transform the
“No, I can’t pessimist”, into the “Why not optimist”. I had
stumbled into that studio with an ataxic gait in the summer of 2005
and eventually emerged as a “dancer”. And more importantly,
all of the movement skills which I had to learn for dancing were the
same skills I needed to learn for walking around out in the real
world. Learning to dance has taught me so much more. It
has taught me how to live again with a renewed freedom of movement
which I had lost; gone forever I thought. The reality was
simply that I didn’t trust myself, or believe in myself, that I
could ever again be anything but the ataxic, clumsy person whom I
had become. I lived the label of my diagnosis, Spinocerebellar
Atrophy 14, and had resolved myself to its control – but that
doesn’t work for me anymore. Now…now with knowledge of the
dance…I have choices…and so do you! You just need some help to
find them.
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