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MS Can’t Cripple Art and Soul

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<i> Tainsky lives in Santa Monica</i>

I danced with all my heart when I was part of my university’s touring modern dance ensemble. It was the end of the ‘60s and grace and fluidity were as much a part of my world as Bacchus, Brancusi and the Beatles.

There were signs back then: the numbness of a hand, a tremor in a leg. But they would soon pass and be forgotten.

So I danced for joy and freedom and to nourish my soul. On the stage, the sweat dripping down my face, life was palpable. I was centered in this whirl of energy. I was connected.

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And still I love the dance, but now my life has changed. Four years ago multiple sclerosis exploded in my body, and today it is crippling me. I no longer walk so much as hobble.

At first I would wake with terrible headaches and not know why. My right leg was constantly in pain and I developed a limp. Then both legs grew weak and I began to fall.

It would take nine doctors, two orthopedic surgeries and 33 months before I would know why my legs were failing me.

“I’ve seen worse,” said the neurologist examining the pictures of my brain and spinal cord.

He had just told me I had MS, a disease I remembered being referred to as the “crippler of young adults.” His comparison of my case to others brought me only cold comfort.

I sat in his examining room, a dumbfounded smile on my lips. I could feel the color drain from me, and my stomach went into free fall. I was so stunned with his news my face went numb.

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He suggested I read “Multiple Sclerosis” by Dr. Louis Rosner and Shelley Ross. The following day I went to the library and limped into the stacks in a daze. Overcome with Angst, I would begin to read about this disorder that now claimed me.

This incurable disease, I found, could blind me, cripple me, slur my speech and cloud my mind. Yet it was not contagious, nor was it fatal. The first thing that sprang to mind was that I would be present to witness my own deterioration, if it was to come.

At any time, in any combination, MS would let loose numbness, loss of balance, paralysis, weakness and a host of other plagues. In the night I would wake to hear my knees bubble and hiss.

Had God visited this bane upon me?

No, but it would take time to realize--and accept--that this was one terribly powerful neurological disorder. First, I grieved. I futilely searched for someone or something to blame. I sank into despair and depression, and I wept.

But with my tears came a realization that if I was to go on I had little choice but to accept what had happened. What was the alternative? A headlong rush to oblivion fueled by drugs and alcohol?

Not for me. And it was at this juncture that I chose to forge ahead. I would accept the new conditions imposed on me and make the best of it.

One choice I made soon after diagnosis would profoundly influence the way I would deal with this disease.

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When I found out I could lose the use of my hands, I knew I had to play the clarinet. Perhaps it sounds strange, but the idea of taking up this instrument just popped into my head. I’d played it as a child and hated it. Now, I could appreciate the beauty of its sound as well as its flexibility. Jazz, pop, classical--they could all be at my fingertips, as long as my fingertips still worked.

The phrase play it before it’s too late emblazoned itself on my brain. I saw myself playing “Danny Boy” and “Stranger on the Shore.” I rushed to the music store, rented an instrument and started taking lessons.

The steadying influence and emotional succor playing the clarinet has provided me has been priceless. When I hit a low E on that woodwind, I vibrate with the universe.

And now I can play those two tunes I mentioned and a fair number more.

Armed with music I decided to enlist this disease in my cause, to lead as full and rewarding a life as possible. I would combine my first love, writing, with a subject I continue to grow more familiar with every day--disability.

My first published article was about a foreign dignitary’s visit to a local computer training center serving the needs of people with disabilities. I am working part time for the Westside Center for Independent Living and looking for writing jobs.

There is such drama and heart to be found chronicling the lives and activities of those who make up the community of people with disabilities. Their stories are the stories of the human spirit, in all its magnificence, as it battles to overcome adversity.

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As for myself, I recently met a woman, one who is bursting with life. She too grapples with MS. But perhaps, this is a story for another time.

It is, to be sure, unnerving to live with this disease, but there are two constants I entertain as I would welcome guests. They center me and connect me once again to the joy of this life. They are the desire, and the courage, to always dance with all my heart.

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