Member-only story
Inside a Life With Tourette’s
Growing up with a disorder that almost no one understands
In July 1995, partway through a monthlong road trip as far west as Glacier National Park, I began to do an odd thing. This was the summer I was 9 years old, between third and fourth grades.
My parents had discovered that camping was an affordable way to sightsee. They bought a cream-and-gray Coleman trailer, lightly used, that hitched to the rear of our Dodge Caravan and uncoiled by hand crank to reveal two beds that unfurled like wings, a little modular plastic-and-canvas room, cabinets, a foldout table, and a sink. The vehicle was like origami in reverse.
Midway through the trip, I began to do the odd thing: I shook my head too often, and too violently, as a woman might to sweep hair from her face. But my hair was short, and the act seemed involuntary. By evenings, my head ached and my small neck throbbed from exertion. The prior year, my parents had noticed a lurching of my eyebrows; I raised them every so often, as though quizzically. It did not seem like a big deal — an uncle had a mild facial tic, a subtle twitch of his nose, and they reasoned that kids go through phases. I meanwhile suffered from allergies, and as we drove from the Badlands to the Tetons my parents guessed these symptoms were connected. They bought me over-the-counter allergy pills. I continued jostling.
After we returned home to New Hampshire, my parents brought me to a homeopath, who recommended vitamin B6 and a magnesium supplement. These helped about as much as the allergy pills. My parents then made an appointment with a doctor, who ran some tests, including a CT scan. All showed an ordinary 9-year-old brain. But my strange habits were multiplying: I began to jut out my lower jaw to one side or the other, enough to cause swelling. The doctor referred me to a pediatric neurologist, who prescribed a small dose of a pill called Clonidine. The jerking of my head ceased almost entirely. My jaw and eyebrows stayed put. The neurologist predicted that after a few months of relief, I could taper off the medication during winter vacation from school, and I likely wouldn’t need it again.
By December, though, I resumed fidgeting and grimacing. I began to clear my throat compulsively, half-coughing. While I…
