Shaking and Alone: My Life with Tourette Syndrome

My mother has dementia. She is in the final stages. She no longer knows who I am, not really, but she knows I am someone familiar. Someone she loves, and someone who loves her.

Recently, a new tic has developed—my left shoulder jerks forward. My tics are always worse when I am tired or stressed. My last visit with my mom, I was both. My shoulder shook.

She noticed. Then, she started copying the movement. Maybe she thought I was dancing and decided to dance with me from her wheelchair. Or maybe, somewhere in the deep, fading corners of her mind, a mother saw her little boy shaking—six foot seven, 260 pounds now—and she joined in, so I wouldn’t feel alone.

A Life Shaped by Tourettes

I was diagnosed with Tourette Syndrome young, especially for the late 80s when early diagnoses were rare. My parents had been getting reports that I was disrespectful at school. It didn’t make sense—I was a well-behaved kid.

At the time, I had a loud throat-clearing tic, another where I’d randomly repeat the time, and one where I frequently looked down. I still have all three today, though the vocal tics are now rare and the throat-clearing one is barely noticeable.

My teacher thought I was doing it on purpose. Thought I was mocking her.

So my parents took me to one of the world’s top neurologists at the Cleveland Clinic. I was diagnosed with Tourette Syndrome. Immediately, they put me on heavy medication. That started a ten-year phase where I was whoever the medicine made me.

What is Tourette Syndrome?

Tourette Syndrome (TS) is a lifelong neurological disorder with no known cause and no known cure. It involves uncontrollable, repetitive movements or unwanted sounds—tics. It often coexists with other neurological conditions: ADHD, anxiety, depression, bipolar disorder, OCD.

Contrary to how it’s often portrayed, involuntary swearing or shouting obscene things is rare, affecting only a small percentage of people with TS.

The Weight of Medication

I grew up in a loving and supportive family. They were educated on TS and deeply involved in my treatment. But for me, treatment mostly meant medication.

Each new pill came with side effects, requiring another pill to counter them. A medication would work for a year or so, then lose effectiveness, and I’d be switched again.

I couldn’t tell you who I was as a child. Outgoing. Shy. Life of the party. Loner. Happy. Sad. Talkative. Quiet. I was all of them at different times. I was none of them at all. I was whoever the medicine made me.

A Moment That Changed Everything

Fifth grade was rough. That was the year I was first hospitalized for suicidal thoughts. I was ten. The solution? More medication. I think lithium was one of them.

I only remember being exhausted. I had been a standout athlete, always moving, always playing. That year, I stopped. I wasn’t interested in sports. I wasn’t interested in anything.

I changed. And my classmates noticed. I lost friends.

My parents, working with the school, decided to hold a presentation on Tourette Syndrome for my entire class. Maybe they thought understanding would bring acceptance.

But it was 1990. Nobody had heard of Tourette’s. A year later, the movie What About Bob? came out, and suddenly, Tourettes was a punchline.

The presentation ended, and they opened the floor for questions.

A kid named Tony raised his hand. Will he die from it?

The nurse answered, No.

Tony shrugged. Darn it.

Everyone laughed.

That was the moment I understood. I might get support from my family. A few close friends. But outside of that, I was alone.

A Life on Borrowed Time

My teenage years were difficult. I was always a standout in sports, especially basketball, but outside of that, I don’t remember many happy moments beyond time with my family and my best friend, Aaron.

Inside my home, my childhood was good. Outside of it, I was miserable.

I was always surrounded by people—my big family, my teammates, my castmates in theater—but I always felt alone.

The battle never ended. I never won. I never told anyone how I felt. From my first counseling appointment at age seven, I learned that if I said the right things, people would let me go back to being alone.

Once, I turned my closet into a little refuge—pillows, blankets, a light. I wanted to be as far from the world as I could.

Through my teens, the answer to everything seemed to be try a different medication. I was hospitalized twice for depression. Once, I held a knife to my throat. My twin sister pried it from my hands, grabbing the blade itself.

I don’t remember that. Or the behaviors that led me to the hospital. I only know what I’ve been told.

As an adult, I can look back and see that wasn’t really me. That was the medication. But as a kid, I had no sense of identity. I was whoever the drugs shaped me to be.

We were searching for a magic combination—a way to control my tics, my thoughts, my emotions, while still letting me be me.

We never found it.

Breaking Free

After a particularly rough year, I turned eighteen and made a decision. I stopped taking my medication. Cold turkey.

I was told I wouldn’t function. That I couldn’t function. That I’d come crawling back.

I didn’t. I went to college.

The first semester was brutal. I had a roommate. I overloaded my schedule. I tried to do everything, be everything, and I struggled.

But then, I found myself.

For the first time, I excelled in school. I excelled in sports. I excelled socially.

I met the most beautiful, popular girl on campus, and she became my wife. I got involved in church, led Bible studies, won every leadership award the school had to offer.

Life was great. The difference?

I was off medication. I was free.

I learned that Tourette’s didn’t limit me. That I could succeed without medication. That I could be alone most of the time, let my tics go wild, and still be productive in short bursts.

When I stuck to that, life was good. When I strayed, life was very bad.

Finding Peace in the Tics

If I am tired, stressed, or anxious, my tics are worse. Tasks take longer. Interaction becomes impossible.

So I hide. Shelter myself away when I know my tics won’t be controllable. It happens more often than not.

Oddly, those times—when my head jerks, when my shoulder shakes so much my arm goes numb—are when I am most at peace.

I don’t fight it. I let the tics come. I feel weightless. Free.

When you see a cheerful text from me, a happy post—it’s often in those moments. Ticking away, alone, but content.

The thing is, I’ve never figured out how to be productive during those times. Or how to include others.

Not my ex-wife. Not any girlfriend since. Not my family. Not my friends.

That time, when I feel most at peace, I am always alone. I know no other way.

Shaking a lot tonight. Alone.

This is my life.

Still smiling.