Over the last few weeks, I’ve been working on an essay about my childhood experiences with Tourette Syndrome. There are many misconceptions about Tourette and scientific accuracy is important to me, so I’ve been diving into reliable publications for facts and statistics about this neurocognitive difference. Typically, my resources for projects like this are the academic journals one can peruse at Google Scholar. I also rely on information from organizations that support TS research such as the Tourette Association of America. But one of my best sources for understanding my experiences with TS is my older sister Elizabeth. I’ve come to think of her as my historian, and I am incredibly grateful for the perspective she provides.
Beth and I are just 17 months apart, and we Hart ladies have excellent long term memory, which makes my sister a reliable source as I delve into my past. Our excellent recall is probably due in part to the fact that my sisters and I all have synesthesia. According to research by Dr. Jamie Ward, PhD, people with grapheme->color synaesthesia have a greater capacity for long term memory. While I remember some of my first experiences with Tourette Syndrome, I don’t have a clear sense of what my tics looked like to an observer. So I called my sister to get her take on things.
In her recollections, Elizabeth brought me back to second grade. “Do you remember that green dress you had, the one with white smocking at the top”? she asked me. I did remember it; it’s the dress I’d worn for my school photo. “You were wearing that dress and I remember watching you do this strange thing with your throat, like you were swallowing over and over. And you made this noise when you did that, kind of like the sound of gulping hard”.
I did remember that tic; it was one of my first repetitive behaviors. I also began compulsively clearing my throat around the same time. I remember the feelings I got from these behaviors, a sense of relief that didn’t last long, which is why I had to do these motions again and again and again. I remember the movements, I remember the sounds, I remember the sense of pressure that seemed to decrease if only for a little bit. But I have no recollection of what I looked like when I was beset by tics.
I sometimes doubt my memories of the onset of Tourette, in part because my parents never addressed my odd behaviors, and in part because, while I remember the sensorial components of TS, I don’t think I ever looked in a mirror when I was a kid and saw myself ticing. My family didn’t make home movies, so there’s no video documentation of my Tourette symptoms. This is why my sister’s recollections have such value for me. As I explore my past to get a better sense of my neurodiverse traits, my sister has been my best witness.
A few years ago I was in Spain for the Fundación Internacional Artecittà synesthesia symposium in Alcalá la Real. At that event, visual artist Ninghui Xiong gave a painting he created to author Patricia Lynn Duffy. I was unaware that anyone recorded the moment, but the video of this conversation between artists is available on YouTube. Not only does it document a wonderful encounter from 2018, it also inadvertently records my tics. At about 1:30 in the video below, you can see me making repetitive mouth movements, that might look like I am eating. I’m not. These are the motor tics that are a manifestation of my Tourette Syndrome. It’s a little discomfiting for me to see them, and honestly, I hate the way I look when I’m in full tic mode. But I’m comforted by keeping in mind that advocacy for neurodiversity is important to me. And, I can be the best ally for my neurodiverse community by showing up exactly as I am, tics and all.
