Shannon KeoughWhat does it mean to be normal? This is a question we ask ourselves every day. The traditional stereotype of a normal person is interpreted in many ways, since people have become very opinionated over the years. But, what if I told you that people like me will never be considered normal in this society? You would think we’re all unique in our own ways of course. If normal is having to twitch every second of every day, suffering from thoughts and urges that only bring you pain, both physical and emotional and living each day never knowing what your mind will tell you to do next, then welcome to my world, the world of Tourette’s syndrome. My name is Frank Lozzi and here’s my story.
I was 10 years old and my parents put me into a new school. Fifth grade was a big year for me: new school, new kids, the whole new life experience. To be honest, I don’t recall much about my thoughts before this time, so I thought it would be a great place to start. During that year, I started getting these urges, these urges to do things like blink really hard or shake my head. At the time I figured it was just my nerves because I was a pretty shy and nervous kid. But, when it continued throughout the year, things started to get really scary for me. “Blink three times in a row,” my mind would scream at me, and I heard it loud enough where I really thought others would too, but it was all in my head. If I didn’t listen to it, I felt like something bad was going to happen. That feeling still goes on today and I have never learned what those bad things might be.
Over the next four years of middle school, I experienced things I doubt anybody would want to live with. I started getting new twitches every month or so, alternating whenever I found something new to do. I would blink hard until my eyes hurt, bite down on my teeth until it hurt to chew, twist my neck until it got to the point where I couldn’t even look up. Along with all of this was the emotional damage I took from the other classmates, which, to be honest, did cause a lot of damage to me. What also killed me was not knowing what was going on.
My parents told me about Tourette’s syndrome. I had never even heard of the term before. My dad told me he also suffered from it, so that’s where it came from. Tourette’s is a genetic disorder which is commonly found in boys more than girls, which explains why I got it and my sister didn’t. I can’t sit here and say my parents didn’t try to help, but to an extent it didn’t help. My dad always said it was something I have to live with and I would grow out of it. He would say how he doesn’t twitch much anymore and figured it wasn’t that big of a deal. My mom didn’t really understand what was going on, mostly because she didn’t have it. There was not much she could have done anyway, nobody could have made this go away.
Tourette’s is a neurological disorder which is caused by an imbalance of neurotransmitters in the brain. Doctors don’t know much about it. They do know that we seem to have an excess amount of a transmitter called dopamine, which helps with our natural reflexes, in our brains. This is what causes our reflexes to go off more than usual. The psychological side of it is still not understood.
Over the years, it changed so much. It turned from a simple extra blink to having to shake my head, twist my neck, jerk my hands. Sometimes all one after another. A little bit of OCD plays into it as well. I’m what I like to call myself an “evens person.” Everything I have must be in an even number. If not I will find a way to make it even. If I look one way I have to look the other way. If I crack my left middle finger I have to crack my right one. If I punch something with my left I have to hit it with my right. The list goes on forever. Imagine this little voice in your head, screaming at you to do whatever it thinks of. If you disobey, it isn’t pretty. I’ll start to sweat, shake and get nervous. But when I do it, I feel better, and then the whole process starts all over again. This goes on all day every day.
Senior year of high school is where it all went crazy. I remember one day in history class I suddenly had this urge to twist my back. It wasn’t all the way around, but kind of like a back jerk in a way. I would do it in reps of three every 20 seconds or so. My teacher eventually pulled me into the hallway and asked me if I was okay. I told him I had Tourette’s and that I couldn’t control it. Even on the way home on the subway I had people looking. One guy even walked up to me and asked if I was okay, I just said “yeah” and walked away. It’s been two years since I did that tic and I still do it today.
Let me just give you an idea of what goes through my head throughout the day. The first urge, to twist my back, starts when I wake up, once again three reps at a time. Getting ready to leave, I have to check my schoolbag two times to make sure I have everything. Even though I know I have it all. Walking to the subway my left arm and shoulder will start jumping up, as if somebody hit me from behind (it seems the left side of my body is the most sensitive). Sitting on the subway, I listen to my iPod, having to drum the beats to every drum on every song, while trying to suppress my urge to start kicking the bottom of the seat. While in class, my head shaking starts, which makes me lose focus. During a test or anything I start drumming with my pencil and playing beats with my teeth, which I know people can hear. Waiting in line for food I’ll start swaggering side to side because my feet tell me they need to move. Next class the blinking starts, as if I were winking at somebody. I try to resist, but my mind tells me to do it more and more. I’ll come home and play “Call of Duty,” where I’ll stop and duck for cover, then get up, and get back down for cover, then all over again until I feel satisfied enough to move but I’m already dead at that point. I go to work where I ring as a cashier. I have to count the money over and over to make sure every bill is facing the same way. My bags will not be touched by anybody and they have to be set up a certain way. Reaching up for things on the floor and I’ll twist my back as I’m in full stretch, causing my back to be shot with pain. At night when I set my alarm, I have to check it three times and read it out loud to make sure it’s set right, as I try to sleep through the pain in my back and neck from the entire day. And this is all on a good day.
My body seems to thrive on pain. If I do something that hurts me, my mind will tell me to do it again, but this time with more force to see how far I can go and if it will hurt more. An example would be my back twist. If I do it and I pull a muscle, I will do it again and again. The only way I stop it is by doing another painful tic.
People who know me will say that it doesn’t seem like I let this all get to me, that I take it all very well. The truth is I hide it all very well. The only way I keep going in my fight to beat this is by never allowing myself to be down about it. When I hear things like “you’re so brave” or “it’s amazing how you deal with it,” it really helps me out. If I were to mope all day about this and not show any fight, people wouldn’t give me those receptions and I would hate not hearing it. I am who I am and I’m stuck with it, so I have to make the best of it, right?
I remember the day I went and saw a neurologist. I was 17, before I got my job I currently work at. Even though my parents came with me, the doctor at one point had them leave and talked to me himself. His name was Dr. Liang, a very young doctor from China. First he drew a triangle on a piece of paper, and put OCD, ADHD, and Tourette’s syndrome on three corners. He said that people with one have ties with all three, whether they are small or severe. So I told him how I felt and everything I was thinking and doing, which made him give me the formal diagnosis of Touretts. He then brought up the name of a medicine, which I don’t remember what it was called. Although it might have calmed me down, the side affects were very extreme and most likely not worth it. After the appointment, he told me if I ever wanted to come back and maybe try out this medicine, I can.
Over the next few years, I learned all I can about it to help myself out. Without any medicine, meant I had to fight all by myself, and I was up for the challenge. It seems that when I got to college it got a lot worse. My tics got stronger and more aggressive and my thoughts and urges got even crazier. I’m currently typing this on my laptop, and I have to look over the top at my feet every minute or so. This is an example of a “non body tic,” which has nothing to do with the body’s natural reflexes. I also have to blow on my left wrist every so often. Now that one I really cannot understand at all. I remember the day I started doing it. It was about a month ago and I was sitting with my brother Louie watching TV. For some reason I blew on my wrist, then again sometime later. All of a sudden the urge ragged in my head and I had to keep doing it. Louie was asking me if I was okay and having trouble breathing. All I could say was “I’m okay, I can’t control it.”
The only thing that gets me away from all of it is physical activity. I’m a born hockey player, and when I play I don’t think about it. When I’m out rollerblading it gets me away from all my thoughts. I have this spot I go to near a lake in my area, my get away spot. If I ever feel it’s unbarring at the moment I’ll go there. If I can’t, ill blast my iPod or go out and take a walk. Anything to get rid of an urge. When I’m with my close friends, it will happen and that’s because I can do it around them without having to worry about being made fun of. When I’m with new people I will do it a little, since I’ve learned over the years of how to suppress it a little. If I’m around a girl I like it won’t really happen at all. I guess that’s a plus because I’d rather not have it bother me when I’m trying to make a good impression on a girl.
I decided that after all the years of speculation, it was time to try something to help. In June 2009, I went back to my neurologist to get some questions answered. After a long discussion, I decided to take a medicine he told me about, which is called Klonopin. To the people who dont know of this drug, its a drug which is used for people with seizures and anxiety disorder. It is also a very big street drug, because of the affects it has on your brain. He told me to try it for two weeks and call him back; I only lasted a week. It might have been the most interesting week of my life. It drained so much out of me that I couldn’t handle it, since I’m such an active person. It would make me drowsy, weak and I would zone out alot. I couldn’t even tell you if it helped with my tics because I was so focused on what the medicine was doing to me. I decided that it just wasn’t who I am, that it wasn’t what I needed after all. It just proved to me more that the way I have dealt with the tics will be the way I’m going to do it the rest of my life.
With every new day comes something new with my Touretts. Sometimes I’ll wake up and never know what my mind will tell me to do next, which means everyday is a new adventure to me in a sense. This story will grow with every big thing that happens to me and my tics, and I plan to stay on top of this for a long time. If after reading this has you seeing me in a different perspective, then I’ve done my job because I want people to see this side of me as much as they can. My hope is that you check back on this or ask me about updates when I add them to flozzi.wordpress.com. To answer the infamous question of what it means to be normal, the answer is to just be yourself, because we are all normal in our own way.
