by Beth Boyle Machlan
The problem with harbingers is that we recognize them only in retrospect. I did not know that Tourette Syndrome affected children until I saw a poster on the train I took to work every morning. It featured a small boy gazing out from the wall, abashed; the caption read: “Maybe he can’t ‘just stop it.’ Maybe it’s TS.” I mentally congratulated the advertising team on the snappy rebranding of a disability usually associated with dirty old men, and went back to my New Yorker. A few months later, when my eight-year-old daughter started humming, I didn’t think about Tourette Syndrome. I thought, “For the love of God, stop humming.”
El did stop humming. Then, around Christmas, she started again. Soon the humming became a sort of wordless singing. I called our pediatrician, who told me that it was common for a child El’s age to develop a vocal tic. If it lasted more than a few weeks, I should call back. I called back when the singing sharpened into something that sounded like barking. My daughter cannot be barking, I thought. This cannot be real. I am a writer and a teacher of writing, but I had no words to describe the noises El was making. I couldn’t tell her it would be okay, because I had no idea what “it” was, nor could I describe what was happening to our family or close friends in any way that they could understand. El did not seem to be sick; it was more as if she was malfunctioning, like a stereo speaker spitting feedback, or a car with a broken clutch.
We had just moved from suburban New Jersey to Brooklyn a few months before, and had just gotten used to the hum of the Brooklyn Queens Expressway when El’s noises began to drown it out. I had hedged about making a move to the city for over a year. While it would make almost all aspects of my own life easier, it would make my daughters’ lives much more complicated. It meant exchanging a school with its own nature preserve for what looked like a prison yard, and leaving the sort of neighbors we could depend on in any emergency for friends who, while I’d known them for years, had never even met my children. Then a promotion made the choice for me. At first, I was amazed by the ease of my daughters’ transition — new house, new school, new friends — but when El’s sounds started, all the complications I thought we’d avoided caught up with us, big time. El had been popular enough at her old school to turn yelping into a trend, but now kids were starting to stare. I couldn’t blame them, really. Every time she yelped, I cringed, and I hated myself for cringing.
I wasn’t used to worrying about El. In my mind, her older sister, Em, was the complicated one. Em became extraordinarily verbal at a very young age, making it hard for her to relate to most other children. I’d pick her up at birthday parties only to find her in the kitchen, chatting with the adults. Usually they thought she was a hoot, but other times they regarded her as uncannily precocious — as did her peers, not that they had the language to explain why. By the age of ten, Em was a coltish 5’4’’, which certainly didn’t make it any easier to fit in. She read, she drew, and she tried to ignore the contempt of the other girls. In short, she was exactly like I was at her age, when a delegation of my “friends” boycotted our school’s essay contest because I always won. I tried to tell Em that I knew it was hard, but things would be okay. I refrained, however, from mentioning how long that might take.
El was different. Or rather, I should say, she wasn’t different, the way I considered Em and myself to be different. She was blonde and blue eyed, her height and weight fell right on the 50th percentile, and the oohing and aahing her Gerber-baby looks had elicited since birth evolved into an army of friends and a constant stream of invitations. She was by no means a mean girl; in fact, the parents of socially struggling children often requested that they be placed in El’s class, because they knew she would protect them. Until the tics broke her stride, she exuded a sense of being at home in the world that her sister and I had never known. Then the daughter whose happiness I’d taken for granted started crying every day after school. For me this was almost as disturbing as the noises she couldn’t stop making.
I was given the names of developmental neurologists, none of whom took our insurance or could see us in less than three months. One long bad day when I had almost given up, a wonderful doctor told me that El’s symptoms sounded like Tourette Syndrome. (When you’re worried about brain tumors, Tourette Syndrome seems like good news.) We began behavioral therapy, in which El practiced controlled responses — deep breathing, gentle movements — which she performed when she felt the urge to tic. It wasn’t easy. Just as she’d mastered one tic, another one would pop up in its place, whack-a-mole style. And it wasn’t just the noises; sometimes she rolled her eyes, or flicked her wrists. Tourettes can be treated with medication, but the drugs can be debilitating. Besides, without medication I could convince myself that this was just a phase. The clouds would clear from El’s sky and she’d be herself again.
As I struggled to help one daughter adjust, the other changed without me. Em was much happier in her new school — not the belle of the ball, as she’d be the first to admit, but no longer mocked or left out. She still draws pictures at recess instead of playing games with the other kids, but now they wander over to watch her, and sometimes even pay her a dollar for a drawing they particularly like. The city suits her for the very reasons the suburbs excluded her. When she submitted a sketch of a ghost to a contest to create a new school mascot (School Spirit! GET IT??!!), they didn’t choose it, but at least they laughed. Turns out, Em’s not that much like me. I never would have been that brave.
“Raising daughters is like blowing glass. There’s a painful immediacy to every stage, fragility born from sand and fire.” I wrote that in 1990, when I was twenty and pretentious and knew nothing about daughters except that being one sometimes sucked. I’ve been a mom for more than a decade now. I wish I could say that Younger Me had it all wrong, that mothering isn’t difficult, happiness hard-earned and precarious. I know how incredibly lucky I am. If Tourette Syndrome is the worst thing lurking, I’ll take it with a smile. Even so, I think the skinny bitch was on to something. Our daughters are our daughters, of course, but they’re also girls, and even through the lens of unconditional love we sometimes see what other girls see. I would like to believe that El has lots of friends because she’s funny and generous, not because she looks like Barbie’s kid sister, but I have to admit that it’s probably both. I hope that Em will meet other girls who are as tall as their vocabularies, but she hasn’t yet. (She looks like her best friend’s babysitter.) And El will not be herself “again” because she’s been herself all along. I’m still not used to the fact that even her silence is never silent — she tics when she reads, when she watches TV, and sometimes even when she sleeps. (Like the poster said, she can’t ‘just stop it.’ It’s TS.) But if she’s okay with it, and these days she seems to be, I am, too.
Now I’m glad we moved. New York is, after all, a smorgasbord of disjointed noises. Like the city, El’s sounds are loudest when she’s happy, with no need for control or fear of judgment. The other day, while walking through Rockefeller Center on the way to her doctor’s office, she emitted a flood of yelps that were somehow in tune with the street and the people. Every once in a while, when we were waiting for a light, someone looked over to seek the source. No one frowned or backed away from her. The light changed, and we all moved on.
Beth Boyle Machlan teaches writing and rewriting to college freshmen in New York City. She has written for The Awl, the LA Review of Books, and Nerve.com. Last week, she and her daughters assembled an IKEA sectional in less than 20 minutes.
More information about Tourette Syndrome is available at the Tourette Syndrome Association.