MY PERSONAL JOURNEY WITH ATAXIA: RELEASING THE GRIP, THROWING AWAY THE LABEL. Tom Clouse, MD
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 lose 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.