Moving On

The best way I can describe having tics is like being a marionette that’s involuntarily pulled every which way. But nobody can see the cruel puppeteer conducting the strings.

I’ve been that doll for as long as I can remember.

Like one day in fourth grade, during a vocabulary test, my heart raced as I struggled to hold my pencil, my legs uncontrollably bouncing and hitting the desk. My eyes started blinking so rapidly that I couldn’t see the worksheet.

I pleaded with myself: Write, write, write, just write. 

I watched my classmates as they held their pencils steadily and printed the words perfectly above the dotted lines.

Ten, nine, eight. 

The timer ticked down, and I could not get my hand to stop shaking. Random pencil marks filled the margins of my test sheet. I could barely read my own name at the top of the paper.

Seven, six, five, four.

I knew the answers. But what I’d written looked more like ancient runes than English. I tried to erase as many of the extra pencil lines as I could until my hand jolted again, dragging a big rubber eraser through the center of my entire paper, leaving pink dust in its wake.

Three, two, one.

When I handed in the test, my teacher immediately scrawled “PIGSTY” in all-caps red on top of my chicken scratch. I watched with a sinking heart as my classmates received bright green stickers that read, “Great job!” My mechanical pencil flew out of my hand again with a sudden twitch. Another classmate whipped around, annoyed, shouting, “Can you stop moving?”

If only it were that easy.

I came home crying and told my mother everything. About how my hand seemed to take on a life of its own and refused to hold my pencil. About how my teacher could not read my work. About my classmates staring and laughing.

Mom eventually consulted a doctor. And a few years later, at 12 years old, I was diagnosed with a mild case of Tourette syndrome, an incurable neurological disorder involving repetitive and uncontrollable movements or sounds.

Destigmatizing Tourette’s

To be diagnosed with Tourette’s, there must be a presence of both motor and vocal tics that occur several times a day, every day, or intermittently for at least one year; an onset of tics before age 18; and confirmation that the tics are not caused by medications, other substances, or medical conditions.

That’s me. All of the above. 

However, Tourette’s comes in many forms. I, for example, have a mild diagnosis where I suffer from muscle spasms, neck movements, leg bouncing, eyebrow furrowing, nose scrunching, eye twitching, and the occasional humming vocal tics. Sometimes I’ll wake up and guess which tic will be the most prominent that day. I’m almost never right.

Tourette’s is one of the most visible invisible disorders in the world. Your suffering is on full display, but no one understands what’s causing it. And sufferers have to accept that they’ll never have complete control over their bodies, that their presence might make many uncomfortable. I’ve often felt the urge to apologize for existing in a body that just won’t stop moving.

Having tics makes you hyperaware of the separation between mind and body. My mind lives in a constant state of anticipation of my body’s next move and how I’ll have to deal with the social consequences of somebody noticing them—the stares, the comments, the potential laughter. Many can’t fathom that my body moves without my directive. You get used to being told to “stop exaggerating,” to “calm down,” or “relax.”

The physicality of this syndrome takes a toll, too. My muscles are rock solid with tension all the time. My body often shuts down from exhaustion after social events because of the extra energy it takes to try and suppress my tics—which rarely works, yet I still try every time for the sake of everyone else’s comfort.

A common misconception about Tourette’s is that all people with tics have the syndrome and formal diagnoses are not necessary, which disregards Tourette’s as a neurological and often genetic disorder. Tourette syndrome defines the spectrum of tics caused by a neurological disconnect in an individual’s brain at birth, and not tics exclusively developed as a side effect, commonly of medications or anxiety.

Meanwhile, the media and pop culture have painted Tourette’s as a person shouting curse words involuntarily. This narrow societal understanding means many who suffer from mild Tourette’s and could benefit from a proper diagnosis might not realize they qualify because their tics aren’t the same or as extreme as what they see on television. In truth, Tourette’s is a spectrum, which means no two people with the disorder are the same.

Regaining Control

Controlling my body and successfully holding writing instruments—two skills absolutely mandatory for a writer and dancer—have never been my strong suits. Whenever I talk about my passions, those who know about my diagnosis often assume that I’m making life harder for myself.

But they could not be more wrong.

Most can’t fathom why someone with tics would pursue two of the most detail-oriented and synchronistic fields, but it makes sense to me. It’s empowering to know that my life is centered around skills I “shouldn’t” be able to do.

Writing and dancing have been the two outlets that soothe my tics and give my body a taste of normalcy. Or as close to what I imagine “normal” feels like—composure, control, possession. That I am the sole owner of my body. That I call the shots. And that I know exactly what move my body will make next.

Growing up, I often felt underestimated because of my body. It’s hard to be taken seriously by those who deem you physically incapable compared to those without tics. To cope, I wrote daily journal entries and creative writing stories. I took non-competitive studio dance classes since I was anxious that I would not physically be able to keep up with a competitive team.

I lived life with “no” always on the tip of my tongue. I assumed my tics made me unqualified for most activities or that I’d let teammates down if I said yes. However, the more I independently pursued these passions, I noticed that my tics soothed when I would focus on crafting a story or learning choreography.

The occasional muscle spasm would still happen, but when writing and dancing, my tics did not feel debilitating. As if my body gave my mind a break. So I enrolled in my high school’s journalism and dance programs and found communities that encouraged me to challenge my limits rather than limit my challenges.

I became a human-interest writer for my school, illuminating the hidden stories and adversity of fellow students, the way I wished to be understood in the past. Joining a dance team gave me set hours in the week to have control over my body and to be physically functioning at the same level as others. I no longer felt like my tics defined me. I was no longer the girl who couldn’t stop moving; I was the girl who moved with flourish, whose words moved others.

Pride Over Pity

I turned 21 this past March. In addition to making it to the legal drinking age, I also made the list of one percent of adults with Tourette’s whose tics did not dissipate after being diagnosed as a child. Though they’ve gotten milder with age, and pencils no longer fly out of my hands, I still suffer from certain motor tics. But I like to think about my tics as a part of my childhood I can never lose. They’re a manifestation of that anxious little girl, always in motion, whose hand I always hold.

Having tics as an adult has not stopped me from succeeding academically as a college student and from living a fulfilling life. If anything, they’ve made me even prouder of my accomplishments. I continued pursuing writing and dance at Santa Clara. By studying English and journalism, joining the SCU Dance Team, and taking on leadership positions at SCU publications, I have created a routine that relieves the most inescapable, exhausting part of myself.

Every dance practice, halftime routine, writing class, and magazine interview provides outlets that free me from my tics. And on my more challenging days, I no longer let any looks or comments intimidate me but rather use them as an opportunity to open a conversation.

Even now, writing this very story has given me a moment of peace. I’ve told the cruel puppeteer to take five and I’m moving on my own, without strings, free.

Francesca D’Urzo ’24 is an English major with a double minor in journalism and Italian studies. She is a student intern at Santa Clara Magazine, editor-in-chief of The Redwood yearbook, and a proud member of the Santa Clara Dance Team.