Video documentation of Brian Goldfarb's Global Tourette Project includes interviews with a young charismatic* Argentinian man who suffers from neurologic disease, including severe Tourette tics. Chaotic unpredictable limb movements are almost constant with him; “inappropriate”** verbal outbursts are common. He was asked what is the most difficult part of living with his disease. His response was simple and devastating. “I have to be alone – because I am like this.” I burst into tears. When I watched the video I had just made peace with the reality that most people were now off limits to me, and that I would be alone because of my medical condition. It is just not possible for the average person to understand and it scares them.
Strangely, it is not my worsening neurologic tics that make me feel this way. Rather it is my autoimmune and mental health symptoms that distress me when I am around other people, because the suffering they cause is invisible but acute. It makes any social interaction seem surreal. It feels as if a clear heavy wall divides me from everyone else, because I am continually distracted by symptoms, episodes, and attacks that make it difficult or impossible to comprehend what is going on around me. And yet these terrible distractions are invisible to everyone else.
In comparison, the uncontrolled movements seem minor. I have been intrigued by my own jerking, spasms, stamping, chorea and tics. One hot day after over-exerting myself my right leg began stamping rhythmically and dramatically like a counting horse. I watched it bouncing. I found I could hold my leg down to stop it, but otherwise it just went on its own. It hurts when these spasms occur; it feels like shocks are going through my brain and body, and the muscles get hard and stiff. But the movements themselves are a relief – like a quivering cough that needs to burst out. Stretching out the spasming muscles is a relief; suppressing the movements in any way is difficult, distressing, and temporary.
The uncontrolled movements are a relief because they feel like a manifestation of the distressing little shocks that have interrupted my thoughts for a long time. Only now these shocks run through my body instead of just my brain. The visible manifestation of this disease is a relief to me because for the first time people can understand that I am being interrupted against my will. I am forever being interrupted against my will.
*I found this young man captivating, but I don't think the average person would perceive him this way. Which is a shame. Maybe I should call him.
**There is no such thing, really, as an inappropriate utterance. Every utterance, in its own way, is inappropriate.