DYSTONIA, PART 2

8/16/2018 by Linda Stober Opp

dystoniajerkcl.jpgThree months ago I blogged about my dystonia and the beginning of occupational therapy. I now have a story of a small but significant victory, and how I got there. I realize that multitudes of people are fighting bigger battles than mine. But I can only write about my own battles, so please read on.

The occupational therapist has cut me loose. She didn't say as much, but I think her bag of tricks is empty, and now it's up to me. Actually, I'm in possession of my own literal bag of tricks: a large canvas bag that holds instructions for exercises, a pair of finger splints, an electric stim machine, a split and angled computer keyboard, and a squishy glob of theraputty.

The process of retraining my brain continues. I live with the knowledge that dystonia is never going away. What's more, it could spread. What is two curling fingers and a neck tremor today could become perhaps a worse neck tremor, or added curling fingers, or twisting limbs. So I appreciate the blessing of slow-spreading dystonia, realizing that worrying about the future won't help.

The exercises are honestly quite boring. The stim machine is annoying, as is the split computer keyboard. The theraputty is kind of fun, though. Playdoh for adults. It provides resistance for all kinds of hand gymnastics, and pops like chewing gum when I squeeze it.

All of this therapy and exercise are making a difference. The two fingers on my right hand that spent a couple of years curling and slipping off the piano keys have come out to play. They have to be supervised though, by me thinking about keeping them out there. Over the last few months as I put in my time week after week, I began to be astounded by what was now becoming possible.

Things were improving so well that, after not playing the piano in public for seven months, I thought I might be ready to try again. But I was afraid. Stage fright is woven into the fabric of performing. You can harness it, but if left unchecked, it spirals. The more freaked out you are, the more freaked out you become. You talk yourself into believing you can't possibly perform. Because you could play badly and embarrass yourself, and then you'd have to move to a different town. But something told me that if I didn't get out there soon, I might lose my nerve forever. I decided to make myself do it.

I immediately ran into another problem. I'd been concentrating on my right hand for so long that my left hand had been playing hookey. So between supervising the right hand, keeping an eye on the left hand, not letting abject fear take over, and endeavoring to play musically instead of mechanically, I had a lot of plates to spin.

The thing that kept me going, overcame my fear, and prevented me from canceling at the last minute (besides much heartfelt prayer), was the wondrous fact that fingerings I had written into the music back in the day when fingers 1, 2, and 3 also had to do the work of fingers 4 and 5, were no longer needed. Fingers 4 and 5 were back on the job. Oh joy! I still had to compensate here and there, and let 2 and 3 take over for 4 and 5. But never for very long. 4 and 5 put up a good fight. They just needed an occasional breather.

I played! I played well, even. All the plates spun as one plate, and I made music. After thinking I'd never play again, this was indescribably satisfying. Am I back to where I was before my fingers went AWOL? No. But you don't have to be perfect to be successful.

This battle will never be over. I want to be cured, and move on. But my canvas bag of tricks is, I fear, a lifetime commitment. When I slack off on the exercises it's apparent immediately. Fingers 4 and 5 are determined to return to the curl. At times I glower at the bag of tricks, my albatross, with something bordering on hatred, but I remind myself of how far I've come. I consider the sacrifice my husband has made to juggle his schedule to drive me into the city and back through horrendous traffic, appointment after appointment. I remember the expensive therapy sessions I've benefited from. It can't all go to waste, so to demonstrate my gratefulness I turn on the stim machine, open the container of putty, do my mind-numbing exercises. When I get lazy, gratefulness, combined with a little guilt, is great motivation.

But the greater motivation is knowing that I am making music once again.

COMMENTS

  • Catherine Leggitt

    8/16/2018

    And your music was great! I'm so appreciative that you've done all this hard therapy work so that we--the congregation--reap such awesome benefits. Thank you for not giving up. You're way too young to do that!

  • Linda Opp

    8/16/2018

    Thanks Cathy!

  • Marcia A Lahti

    8/25/2018

    I don't think I'm getting notifications of your blog anymore. I saw this on Goodreads. (I rarely visit Goodreads). I didn't even know you played the piano. Have you heard of Hoopla or Libby Apps (Public Library) You can get audiobooks for free. Would your therapy allow you to listen to a Bosh book?


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