Guest contributor: Thierry Kauffmann

Anxious Bode is not Like Other People

categories: Cocktail Hour / Guest Columns


Anxious Bode

It was another day of quiet thunder. A day where the sky took notice of what was happening below and prayers rose to all souls glow. For ninety minutes, the star neurologist whom I met once in my hospital inferno days eight years ago, sat with me and my mother, for a visit. He remembered all about me, and smiled as he listened, speaking softly while his mind mapped a multidimensional world of knowledge and possibilities. I had dyskinesia, I moved too much, and we talked about what could be done and he asked what I did, and took note of photography, painting, singing, writing, piano playing and composing.  He said, “You don’t really have inactive periods in your day, do you?” and I said, “you’re probably right.” Then he mentioned a possible deep brain stimulation and explained which part had anesthesia, and I said “There is no global anesthesia for this part, I like it.” He turned to me. “You do?” And I said, ‘Yes, I want to be awake, I want to be there.” He said, “everybody says they want to sleep, that they don’t want to be awake, but you do.” There was a pause. “You’re not like other people.” My mom laughed. Then he reached for a microphone to dictate his letter to my physician, describing in detail what had been said and decided. I was seated, without speaking, not a muscle moving, looking at him and he was dictating the description of my unwanted muscle moves when he realized that all he was describing had vanished. His slowly put the mic down. He said “It’s all gone. Your dyskinesia is gone.” And I said “Yes. When I don’t speak, I have none. I am glad you could see this.” And we talked about art and Parkinson’s, how he wished I could have helped the hospital with their collaborative work with the museum and I showed him my youtube page where I play piano while having the disease and he wrote down the address of my channel and I said, “What you did with the museum, you cannot do again, it’s too much work as you said. But for me, that’s what I do, every day.” When we parted he gave me the program for the past exhibit and set our next meeting in twelve months. It was a day, of quiet thunder and furiously beautiful love. An unbearable grace.

[Anxious Bode is Thierry Kauffmann, who lives in Grenoble, France, where he studies sleep, and fights Parkinson’s, all while keeping his chops on the piano.]

  1. thierry kauffmann writes:

    hi Debora,

    Good to hear from you. I don’t know if Deep Brain Stimulation is good for me. My brain is already deep and sure dont need more stimulation 🙂

    • Debora writes:

      Hahaha! Your brain IS deep! AND comes up with best stuff…that’s what we love about Frenchie! Keep it coming for us.

  2. Debora writes:

    Thierry’s back! Another good piece. Love that day of quiet thunder–beautiful. So much going on with the brain these days…Deep brain stimulation, I’ve read about. I wonder if you will be writing your experience?