Frank Lozzi’s journey with Tourette syndrome is a story he has told before but will never stop, as life with TS evolves every day.
What does it mean to be normal? If it’s twitching every second of every day, suffering thoughts and urges that yield pain – both physical and emotional – and living each day not knowing what your mind will tell you to do next, then welcome to my world – the world of Tourette syndrome – where I will never be fit the traditional stereotype of a “normal” person.
I entered it when I was 10. In a new school with new kids, fifth grade was a big year for me. That year, I started getting urges to do things like blink really hard or shake my head.
At the time, I figured it was just nerves – I was a pretty shy and nervous kid – but when it continued through the year, it started to scare me.
“Blink three times in a row,” my mind would scream loudly. So loud, in fact, I thought others heard it too. If I didn’t listen, I felt like something bad was going to happen.
In the next four years of middle school, I experienced things no one would want to. I started getting new twitches every month or so, alternating when I attempted something different. I would blink so hard my eyes hurt, bite down on my teeth until it hurt to chew and twist my neck until I couldn’t look up. Meanwhile, I endured torment by my classmates and emotional damage it caused.
Worst of all, I had no idea what was going on.
My parents eventually told me about TS, but I had never heard of it. My dad told me he also had TS, a genetic disorder found more commonly in boys. Though I have it, my sister does not.
My parents tried to help. My dad said it was something I’d have to live with, and certain symptoms would fade with age, just as his twitches had grown less frequent. My mom didn’t understand as much, but it didn’t matter; nobody could make it go away.
TS is a neurological disorder caused by an imbalance of neurotransmitters in the brain. Doctors don’t know much about it, except those with TS seem to have excess amounts of dopamine neurotransmitters, which trigger natural reflexes in the brain. Abnormally high levels of dopamine cause my reflexes to react more than usual. The psychological side of it is still not understood.
Over the years, it turned from a simple extra blink to having to shake my head, twist my neck and jerk my hands. During my senior year of high school, I had a sudden urge to twist my back in history class. I did three twists every 20 seconds until my teacher pulled me into the hallway to ask if I was OK.
Two years later, I still have urges and tics every day.
On a good day, I get my first urge when I wake up to twist my back. Getting ready to leave, the OCD comes into play. I have to check my schoolbag twice to make sure I have everything because I’m an evens person. If I look one way, I have to look the other. If I crack my left middle finger, I crack my right one. The list goes on forever. Imagine a voice in your head screaming instructions. If I disobey, it isn’t pretty. I’ll start to sweat, shake and get nervous. When I finally feel better, the whole process starts again.
Walking to the subway, my left arm and shoulder – the more sensitive side of my body – will start jumping up, as if somebody’s hitting me from behind. Sitting on the subway, I listen to my iPod, drumming beats to every song while trying to suppress my urge to kick the seat.
In class, my head begins to shake, making me lose focus. During a test I start drumming with my pencil and play beats with my teeth. When I’m waiting in line for food, I shift from side to side because my feet tell me they need to move. By the next class, the blinking begins. I try to resist, but my mind tells me to do it more and more.
When I go to work, where I ring as a cashier, I have to count the money multiple times and make sure every bill is facing the same way. My bags cannot be touched by anybody, and they have to be set up a certain way. As I lean down to the floor, I’ll twist my back, causing a shot of pain down my back.
At night, when I try to fall asleep, I try to ignore the neck and back pain I’ve endured throughout the day.
My body seems to thrive on pain. If I do something that hurts, my mind will encourage me to do it again but with more force to see how far I can go. For example, if I twist my back and pull a muscle, my body repeats the movement to test how much pain I can take. The only thing to stop it is another painful tic.
When I was 17, my parents and I met with a neurologist, Dr. Liang. At one point Dr. Liang, a young doctor from China, asked them to leave so he could talk to me. He drew a triangle on a piece of paper and wrote obsessive-compulsive disorder, attention deficit hyperactivity disorder and Tourette syndrome on each corner. He said people with one disorder have ties to all three.
I told him how I felt and everything I thought and did. After years of speculating, I decided it was time to try medication that could help. In June 2009, I went back to Dr. Liang. After a long discussion, I decided to start taking Klonopin, a drug for people who suffer from seizures or anxiety disorders.
But it only lasted a week. The Klonopin made me drowsy and weak, causing me to zone out and lose focus. Since I’m such an active person, the medication drained me. I decided it wasn’t what I needed after all.
Without medicine, I had to fight TS on my own. Over the years, I’ve learned how to help myself.
As an escape, I turn to physical activity. I’m a hockey player, and skating on my roller blades helps me dodge my thoughts. I also have a getaway at a lake near my house, where I can go if I ever feel unbarred. If I can’t get there, I blast my iPod or take a walk to get rid of an urge.
When I’m with my close friends, I get urges because I don’t have to worry about being made fun of. When I’m with new people, I will try my best to suppress them – something I’ve learned to do over the years. If I’m around a girl I like, it usually won’t happen, which is a plus.
People who know me say it doesn’t seem like I let TS get to me, but the truth is, I just hide it well.
The only way I can continue my fight is by never allowing myself to get down. I’m encouraged when I hear things like, “You’re so brave,” or “It’s amazing how you deal with it.” If I were to mope around and not show any fight, people wouldn’t say these things, and I would hate not hearing them.
With TS, every day is a new adventure. I wake up not knowing what my mind will tell me to do. But my story grows with every tic, and I know the answer to the age-old question, “What is normal?”
Being normal is being yourself, because we all have different ideas as to what that means.
Frank Lozzi asks readers to stay updated by visiting his Facebook page. The full version of his story can be found there. He can be reached at firstname.lastname@example.org.