Voluntary Responses to Involuntary Sensations
“‘Tourette’s syndrome?’ my mom said. ‘Is that what you think Chelsea has?’”
The hill man first came to me while I was in my bed one night. The hill man walked up the hill until he reached a medium-sized rock about three-quarters of the way up. The hill man stumbled over the rock, fell down to the bottom of the hill, picked himself up, and started walking up the hill again, where he again stumbled on the same rock, fell down the hill in the same way, and started walking up the hill again. It was like a very boring 8-bit video game, and it lulled me to sleep within an hour.
I thought of the hill man for most of the next day, while making self-portraits in acrylic on tiny canvas boards. Hill man’s journey up the hill had no beginning and no end. He was stuck on an endless loop. I pointlessly waited for something else to happen. By the end of the day I had thought of hill man (with varying degrees of focus) for almost ten full hours, and he still had not made it up the hill without stumbling over the rock.
Same thing the next day.
Same thing the day after that.
As far as unwanted repetitive thoughts went, this wasn’t so bad, content-wise. For as long as I could remember, after thoughts like I’m feeling great, or I’m having fun, my mind compulsively listed all the things I regretted most in my life: Ruined my mom’s childhood doll on purpose. Faked tears when my great-grandma died. When people of authority talked to me I would often think don’t kiss her, don’t kiss her, don’t kiss her, until the authority figure stopped talking to me. But hill man was far and away the most persistent unwanted thought I had ever had.
One night in bed, after a couple of solid weeks with hill man, I concentrated intently on his journey. I believed that if he made his way over the rock and to the top of the hill, I could finally stop thinking about him. But my brain was stuck in a loop. Over and over and over, the hill man stumbled over the rock. I laughed a little in my bed in the dark, thinking that I was pretending to myself that I could not control my imagination. Then I redoubled my efforts and tried again. I zoomed in on just the man, the way his legs moved, carefully guiding his foot over to the other side of the rock. But it wouldn’t work. He always tripped. I had no control. I felt at odds with my mind, as if it were a separate entity from myself. It was like I had been tricked my whole life into thinking I had the ability to think what I wanted, and was suddenly given concrete proof that I did not have that control. I could not imagine the man going up the hill without stumbling, nor will him and his pointless journey out of my mind.
The hill man remained with me in some form almost all waking hours of my life. Sometimes I would lazily let the images loop in my mind, not trying to control the hill man at all. Other times I would concentrate deeply, trying to help him overcome the imaginary rock that now seemed like one of my biggest problems in life. I thought if he did this it would free my brain of the constant nagging urge to imagine him walking up the hill.
The neck thing was the same but different. It began several weeks after the hill man. I would feel the sudden urge to firmly flex the left side of my neck, causing my head to tilt to the left, slightly but awkwardly. I didn’t know why I was doing this. There was no reason for it, and it didn’t feel particularly good. I didn’t feel the sudden need to flex the right side of my neck.
In theory, I had control over the movements of my body. The neck thing wasn’t a spasm. I performed the neck flex just as I would perform the series of movements necessary to scratch an itch. It wasn’t unconscious. It was deliberate. An unwanted, deliberate action. But, then again, not twitching my neck made me feel uncomfortable, just as leaving an itch unscratched would. I wanted to flex my neck. I couldn’t stop thinking about wanting to flex my neck. I simply had to flex my neck. Sometimes flexing my neck would satisfy me (but was it really me who was being satisfied?) and sometimes it wouldn’t. Sometimes I had to flex my neck multiple times to feel satisfied. Sometimes dozens.
I didn’t know how visible my neck twitch was, but I wanted to keep people from seeing it. I would pretend to itch my ear, cover my neck muscle with my hand, or I would put my hood up, preventing my neck from being seen from the side. Sometimes I would go to the bathroom and flex as hard as I could, trying to satisfy the urge.
I didn’t want to tell anybody. I had never heard anyone describe the persistent unwanted thoughts and uncontrollable body movements I was experiencing. It would sound freakish to explain that I could not stop imagining a man trying to climb a hill, even though I didn’t want to imagine it and the thought wasn’t interesting, and that the man couldn’t even climb the hill all the way, and that I was obsessed with getting myself to imagine him getting up the hill all the way, even though, as previously mentioned, I did not care. And the neck thing, which was possibly related, seemed to be a punishment for not being able to complete the hill man scenario in my mind.
These could only be symptoms of something very bad, I thought. A personality disorder. The beginning of my inevitable psychotic breakdown that everyone had probably been secretly predicting for years.
Eventually, I told my mom. I tried to approach the subject delicately, as I didn’t want my mom to think I was crazy.
“It’s silly but I can’t stop thinking about it,” I said, describing the man on the hill. “Sometimes I think about him for hours.”
“Have you tried doing anything to relax?” my mom asked. “Like massaging your temples or deep breathing?”
“I’ve tried but I just think about him even while I’m doing that stuff. It’s like I don’t have control over my own mind. Also, I keep doing this thing with my neck. Like, flexing my neck muscles. I’m afraid people can see it and my neck is always sore.”
My mom made a doctor’s appointment for me a couple weeks later, and the doctor referred me to a neurologist.
“I think about this man who walks up a hill and then falls down. He does it over and over, and he never makes it up the hill because there’s a rock that he trips over. Once I start thinking about him, I can do it for hours. I picture him going up the hill, tripping, falling, and then going back up the hill over and over.”
“That sounds like some pretty intrusive thoughts,” the neurologist said.
“And then, I don’t know if it’s related,” I said, “but I have to move my neck a certain way, sometimes over and over. It doesn’t feel right unless I do it the right way. Even if I do it the right way, sometimes I still have to do it a bunch of times.”
“What happens if you don’t do it?”
“If I don’t do it I can’t focus on anything else. I just keep thinking about how I want to flex my neck.”
“Have you read The Man Who Mistook His Wife for a Hat?” the neurologist asked, looking at my mom. With the attention off of me, I took a moment to look around the room. The office seemed plain and notably un-brain-doctory. I expected an x-ray of a brain or something on the wall, or plastic models of brains scattered across well-loved bookshelves. There was nothing on the walls but the neurologist’s diploma. There were no bookshelves or decorations or even a rug. Just a desk and three chairs.
”No, I haven’t,” my mom said.
“Oliver Sacks is the author,” he said. “It’s a must-read. There is a chapter about Tourette’s syndrome. The way Oliver Sacks writes is just remarkable. The whole book is astounding.”
I don’t want to read a book, I thought angrily while nodding politely. I want you to tell me what to do.
“Tourette’s syndrome?” my mom said. “Is that what you think Chelsea has?”
“Yeah, it sounds like Tourettic tics with some obsessive-compulsive tendencies that are causing the intrusive thoughts,” he said, writing something on a pad of paper, “Tourette’s and OCD are often related.” He handed me the scrap of paper. The Man Who Mistook His Wife for a Hat, it read. Then he picked up his prescription pad and wrote me a prescription for a low-dosage antipsychotic.
My mom nodded and thanked the doctor. She seemed interested but unconcerned, the way she seemed unconcerned about most things, like the fact that I had no friends, or that I wore my eye makeup thick like a drag queen. For the most part, her lack of concern made me feel capable and trusted to make my own decisions. But in this case, her lack of concern made me feel alone with my problem.
The terms Tourette’s syndrome and obsessive-compulsive disorder were definitely terms I wanted to keep hidden. They were both terms that were misunderstood or barely understood, both by me and culture at large, and I didn’t want to be associated with them. I also believed that they weren’t the correct diagnosis. It wasn’t the doctor’s fault. I hadn’t expressed clearly the fact that I was in control of the neck movements. That it was the compulsion to do these things that was out of my control, not the actions themselves. If I focused hard and used all my willpower, I could prevent myself from performing the movements.
And the hill man. I still didn’t believe that that was anything more than me being weird, my attention-seeking personality tricking myself into believing I couldn’t control the outcome of a thought.
I blamed myself for describing my symptoms unclearly.
But at the same time, the terms also soothed me. I wanted them to be mine. If there were names for what I was experiencing, that meant my strange and embarrassing behaviors were at least common enough to be identified, which meant that there were other people who did the same kinds of things, which meant that maybe this wasn’t my fault, that maybe fault existed somewhere outside of my realm of responsibility, that deep in my brain some mysterious synapse was misfiring, the whole system inaccessible to my conscious desire not to do weird shit.
I had no idea what the drugs were supposed to do. I looked for changes of any kind. Did I feel calmer? Did I have less physical energy? Were my thoughts changing? Was I able to control my imagination more effectively? Could I remain still for any length of time at all?
The only thing I noticed was that I developed new tics in my left breast and left bicep. They ticced in harmony with my neck: neck, breast, bicep, neck, breast, bicep. An internal percussion that my body subtly but visibly swayed to. After a few days of medication, a tic in my left calf muscle was added, followed shortly by a tic in my left buttock. These additions were actually a relief to my neck, since it increased the time between each tic of my neck, which was becoming strained from so much flexing.
I could still stop the tics at any time, but it took all of my concentration, as it does for anyone trying to prevent herself from scratching an itch. I could sit and not tic, but I had to think don’t tic, don’t tic, just wait, don’t do it, and the second I stopped focusing on it, the whole chorus of tics would begin, like a child just waiting for its parent to look away to do something bad.
For the first time, I purposefully conjured the image of the hill man. More than wanting to put him out of my mind, I wanted to defeat him. Maybe now that I was on these drugs, I could get him over the rock and all the way up the hill, and at the top of the hill I wanted there to be a precipice, which I would make him walk out onto before falling off to meet his everlasting death.
I focused hard on conjuring these images. I was determined to beat him. But the man was trapped in the same old cycle. He walked up the hill. He didn’t seem to see the rock. He tripped over it. Stumbled down. Walked up again. Tripped on the rock.
I keep slipping, I thought, just like the hill man. We are both destined to carry out the same meaningless activities eternally, despite all logic. It will never end because no ending exists. There is nothing after the rock except for the beginning of the hill.
I made a careful effort to watch myself tic, trying to find the root cause. I wasn’t telling my bicep to flex, the way I would “tell” my arm to move if I were lighting a candle or pressing a button. And it wasn’t quite like an itch. My bicep muscle did not feel particularly unsatisfied before the tic, nor did it feel satisfied after it.
Was my mind broken in two, one broken piece at odds with the other? How long had this problem been developing? Did it really just appear overnight, as it seemed? Maybe I had been ticcing and obsessively entertaining pointless thoughts for years, only I was too focused on other things that I didn’t notice.
Soon it was September, and I had to go back to school. It was my sophomore year of high school, and I hadn’t maintained any friendships over the summer. My embarrassing and unexplainable tics disincentivized making new friends, as without people around me I would not have to work as hard to hide my weird movements from anyone. In class, I would try to sit in the back corner, where people couldn’t see me without turning around in their chairs. In classes in which I was assigned seating in front of other desks, I spent the entire period focusing on keeping my body still.
For the first time in my life, I found it hard to concentrate in school. I was completely preoccupied with the length and nuance of my tics, hiding the visibility of the tics from my classmates, and, when I had all of that under control, I focused diligently on the hill man’s progress up the increasingly symbolic hill. There had to be some secret code or way of thinking that I could use to defeat him.
Because it had been so long since I had a friend, or perhaps because I had been sitting in the back corners of classrooms and covering myself with heavy hoodies to cover my tics for months, and the symbology of that had leaked into my own idea of myself, I began to embrace the “social outcast” type. I became depressed and sort of enjoyed it. I listened to The Smiths and The Cure alone in my dark bedroom and counted all the ways I was alone.
Night after night she lay alone in bed, her eyes so open to the dark. The streets all looked so strange.
The music and lyrics conveyed bleakness and depression and hopelessness, which were things I heavily related to, but they did not express exactly what I was feeling, and so represented yet another reason I was utterly alone in the world. Which was perfect, because maybe I didn’t want to identify with anyone. Maybe I was beginning to revel in my outsiderness. Maybe defensiveness was the only choice I really had.
In class I stared at all the people who weren’t as fucked up or as complicated as I was, feeling superior for it. I was performing reverse psychology, tricking myself into feeling vindicated for not being able to find a single person to hang out with. And the trick worked really well. I stopped criticizing my behavior as much, committed to the idea that I wouldn’t let myself feel inhibited for the sake of people I didn’t like anyway. I gained a lot of confidence that way, as well as contempt for everyone else.
“Are there other treatment options?” my mom asked the neurologist during my next visit, “Chelsea doesn’t like the risperidone or however you say it.”
“We can try something else, sure,” he said, “Oh, and before I forget, I wanted to recommend you both read The Man Who Mistook His Wife for a Hat by Oliver Sacks. It’s really great.”
“Oh yeah. You mentioned that last time,” my mom said. “We haven’t read it yet.” It was like my neurologist had a particular strain of obsessive-compulsive disorder that caused him to recommend The Man Who Mistook His Wife for a Hat to his patients repeatedly.
“The man who has Tourette’s syndrome in that book tries medication, but he ultimately finds that the medications dull his mind and leave him a shadow of what he was with the Tourette’s, so he stops taking any meds and lives with Tourette’s syndrome.”
“It dulled his mind?” I asked.
“You’ll have to read the book,” the neurologist said.
“I’m in control of what I’m doing,” I said, trying to be assertive. “The tics, I mean. I’m physically doing them. My muscles aren’t just spasming on their own. I can stop doing it if I really concentrate on it. So is that Tourette’s still?”
“Yes. Sometimes patients with Tourette’s syndrome are able to suppress their symptoms, but will usually feel a build-up of pressure or need to perform the action of their tic,” he said.
“Yeah,” I said.
He was describing my exact experience, but I still felt unsure about my diagnosis, hesitant to believe him, convinced that I had not expressed myself clearly or conveyed my experience accurately. Part of me truly believed that the entire thing was imaginary. Plus the drugs weren’t working. So clearly there was some kind of problem.
But these things take time, and I know that I’m the most inept that ever stepped.
I developed a new tic in my abdomen. This tic was superior to all previous tics, because it didn’t need to be a part of the chorus of my other tics, it sustained itself for up to thirty seconds at a time, and could be performed at the same time as any of my other tics. It would be neck, breast, bicep, calf, buttock, neck, breast, bicep, calf, buttock, and all the while my abdomen would be flexed. Soon, the quick flexing of my other tics wasn’t satisfying me at all anymore, and they became sustained as well. Huge areas of my body flexed simultaneously for up to ten seconds.
The tics weren’t painful. My body adjusted to the constant flexing and sometimes I barely noticed it happening. But the neck tic remained a source of embarrassment at school, as it was the one that was clearly visible to others.
The abdomen tic evolved to include a small, controlled exhale that sounded like hut, which transformed into a series of small, controlled exhales that sounded like hut, hut, hut, hut. It was the first time I was doing something audible, and, though it was pretty quiet, it couldn’t be easily covered up.
I know what you’re doing, I told myself, not knowing at all what I was doing and not sure whom I thought I was addressing, and it’s not going to work.
I believed, or wanted to believe, or thought it would be most indicative of good mental health to believe, that I was doing all of this to myself. That I was trying to get attention. That I had nothing to offer the world so I was making up symptoms to make myself interesting. That I had successfully fooled my mom and the neurologist into believing I had a disorder previously unknown to me, but that deep inside I knew it was all a game. A sick, weird, mentally unstable game. If anything, my disease was being able to conjure symptoms of a disease out of nowhere, and convince everyone that I had the real disease.
“Have I told you about The Man Who Mistook His Wife for a Hat?” the neurologist said. I looked behind me like they do on sitcoms to mean are you talking to me / is this some kind of joke? Maybe recommending the same book over and over was some kind of subversive method of treatment. Was I supposed to become so perplexed that my body would reappropriate the energy it spent on tics and use it to roll my eyes and moan in agony?
“I think so,” I said. “And I think I want to go off the meds.”
The neurologist stared at me, and I imagined he was trying to gauge how dull my mind had gotten.
“We could try a different prescription,” he said, “There are lots of options.”
“I don’t know. It’s not getting any better,” I said, “and I don’t like being on drugs.”
My tics were, in fact, getting worse, more numerous, harder to control, increasingly impossible to hide, more difficult to imagine that I had any power over them at all. I had begun waking up with aching muscles. I seemed to be developing new tics weekly, the most recent of which was to open my eyes very wide and look very quickly to the right and left, as if I felt a sudden bolt of surprise and paranoia approximately eighty times per day.
He said he’d cure your ills, but he didn’t and he never will.
Morrissey was referring to things I had never come close to experiencing, but I interpreted his words to mean that medication was not the answer and that my neurologist would never understand me, just like everybody else.
I wanted it to stop. I wanted it all to stop.
But more than wanting it to stop, I wanted to stop thinking about it. Between having tics and thinking about my tics and hiding my tics and trying to stop my tics and blaming myself for having tics and accusing myself of fabricating the whole tic situation and going to the neurologist to describe my tics and taking little pills that did nothing for my tics, I was doing little else. I simply wanted to stop.
Maybe I couldn’t stop all of it, but I could stop some of it.
I bought The Man Who Mistook His Wife for a Hat years later, after I had had my abdomen tic so long that I was maintaining six-pack abs. As the doctor had promised, I loved the book, and it opened my eyes to the subtleties and complexities within the brain. There were a massive number of things that could go wrong, so many unknowns, so many strange connections. I’m strangely comforted by the fact that science is so far from even identifying all the things that could go wrong.
I realized the hill man was gone one day, realized I hadn’t thought about him for weeks. As soon as I stopped making an effort to obliterate him, it seemed, he went away on his own.
The hill man was replaced by other meaningless unwanted thoughts; for example, a boring loop of a dull conversation I had with a friend ten months before and suddenly remembered with great urgency. A sudden inexplicable obsession with mentally listing every present ever given to me by my grandpa. Rolling and rerolling imaginary Yahtzee dice.
Over time, my tics got better and then they got worse and then much better and then much worse then better, a cycle that promises no end.
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Knowing and understanding that I’m autistic has given me the strength to experience the excess of empathy that comes from reliving my vivid, video-like memories.