My experience (written in 2009, senior year of high school)

            It seems to me, that people today are too quick to judge. If a person changes their clothes, hair, attitude, even weight, they are scrutinized. Yet, there are people born with things that they cannot change, such as mental and physical disabilities. They are stared at and on occasion mocked. I know what it is like to be, not the one staring, but the one stared at. My disabilities are only noticed when people really pay attention to me. These disabilities are Tourette syndrome (TS) and Obsessive Compulsive Disorder (OCD). Several years ago, I hit rock bottom, and couldn’t get out. It was then that I knew I needed to change. I will explain the problems that I faced, what I did to change, and how it has affected me and my outlook on life.

            In sixth grade, I was a seemingly normal 11 year old. I had friends, got good grades, and spent time with my family. In actuality, I was not normal. At age 11, I weighed 71 lbs, which was much lower than anyone else my age. The reason I was so underweight was that I didn’t eat, but I wasn’t anorexic. My reason was, that I was so stressed all the time I couldn’t eat. When I feel stressed, all my emotions go to my stomach, causing me to feel sick. This being what it was, my stomach shrunk, and I couldn’t gain the needed weight. Where my TS and OCD come into this, is that the stress I was feeling was ten times worse than what other people feel. Anxiety usually comes with OCD, as do panic attacks, which I started having later on. Every morning I would wake up, and start my routine, but it was though I wasn’t really there. Even though I was conscious, and could interact with my parents, I felt like a robot.  Doing the same things every day, it all runs into one long horrible day. At this point, my tics occurred so often, that I was constantly doing something, and they were annoying. I would push my spit out onto my lips, and leave it there, because it was comforting, but when I was out and about, I would cover my mouth. Another tic I had was a cough, but not just a normal cough, one that was pushed, hard, and unnaturally loud. It would be so hard sometimes, that I would gag because of it. For comfort, I had a tic that I had to pull the necks of my shirts away from my neck, and breath on my fingers. For some odd reason, the warmth on my fingers, and the condensation that was there made my stomach feel better. Of course it was all a mind trick, and I was just trying to find something to make me feel better. The tic that I have had since I was little was present too, the tic is that I blink my left eye often. So by the end of the day, my eye would hurt because I was blinking it so often during the day. It felt, at the time, that I was all alone, drifting away from everyone, and there was nothing to hold on to me. Just functioning like a normal person was difficult, it felt like a chore to get out of the house in the morning. Sometimes, I almost couldn’t. In all my life, I have never been as scared I was as then, because there was nothing I could do to control it.

            It was obvious to my parents that I needed help, so I started going to a nutritionist. On top of that, I started going to a different counselor, and I also went to my doctor every few weeks. I knew that it was supposed to help me, but it was hard. There were times that I wanted to give up, but my parents told me that if I did, I might need to be taken to the hospital. That was something I was even more afraid of, so I pushed on. With my nutritionist, I started having to write down everything that I ate in a day, and how many calories were in what I ate. My new counselor helped people with eating disorders, so together we talked about what made me so stressed, and how that was affecting me. At the time, I had also lost my best friend. She decided that she didn’t like me, and we stopped talking. This was really stressful for me, so my counselor focused a lot on friends, and how people were treating me. Slowly, but surely, I began to get better. My stress levels were going down, and I was gaining weight. This made me feel better, and gave me hope that I could get through it. Another thing that was helping me was the band Tears for Fears. Around that time, my mom gave my dad the CD Shout: Best of Tears for Fears. The lyrics and sound gave me comfort and strength, so for a long time, I listened to them every morning so I could function. Even thought it took time, I finally was well enough to stop going to the nutritionist, and the counselor. So by the start of freshman year, I was more or less back to normal.

            Going through what I did, changed me in ways I didn’t know possible. When I was little, there were things that I didn’t do because I was scared. I didn’t want to mess up or be wrong, and that held me back. Before I changed, I didn’t think I could do great things, I never knew I could win. Once I took control of my problem, I could do anything that I set my mind to, even if I failed. Now, years later, I still strive to do the best that I can, but if I fail, I get back on the horse and try again. Also, I stand up for people more than I did before, because I am not afraid of what will happen. When I am older, I want to teach people about TS and OCD, because when people have limited knowledge, they are willing to judge others even if they don’t know the whole story. It hurts when people judge me when they see only my tics. I have had times when I am angry or passionate about something, and my blinking tic becomes worse. People that don’t know me have asked me if I am winking at them, and when they do, it is always in a snide tone, which makes me livid.

Still today, I feel the repercussions of what I went through. If I lose weight, I drop quickly, and I takes me a long time to gain it back. At times when I feel nervous, my stomach is always the first to tell me. If I am excited, my stomach is the first to know, but I can tell what emotions I am feeling when my stomach starts turning into knots. Even now, I sometimes slip back, but my parents always call me on it, and I change. I change, because I never want to go back to that place. Out of all the things I have experienced in my 17 years, it was by far the hardest. Yet once I found help, I could accomplish greatness. It changed me forever, and helped me in many ways. Using my knowledge of my problems, I can make myself a better person, and help others with that knowledge.

Vent!

Okay. I need to quickly vent. There are a few tics that I have which rotate, but they are all equally annoying. Right now I have a neck tic which makes me twitch my head and tightens the muscles on the back right side of my neck. Last night I went to a musical on campus with my roommates. Everything was fine and my tic wasn't too bad, and then the lights dimmed and my tic went crazy. It wasn't as much of the twitch/shake of my head that was bad, but the tightening of the muscles. It hurt so bad!!! I had to sit with my hands behind my neck to try to stop it. After intermission some kids in the row behind me moved to the empty seats directly behind me. I felt bad for them because I kept on moving my head. What's done is done. The tic is a little bit better today, but I really hope the tic moves soon. I go home for spring break in two weeks and I really don't want to have the tic when I am home.

Why are you doing that?

As an adult, I have come to the realization that people are still so uneducated about the truths of Tourettes. Even now, years after I was diagnosed, I feel that there are so many things that people assume about me, about this disorder that they see.  People might assume that I am crazy, which may be true, but it is not because of my Tourettes. I am crazy for different reasons, such as the deep love I have for dancing, how much I care for my friends, the enthusiastic energy I get when I am in Disneyland, and the hundreds and hundreds of pictures that I take on any given vacation. I am a self-proclaimed artsy-fartsy (yes, I used the word fartsy) bookworm, who is an eccentric singer and dancer.  It is those things that define me, not my Tourettes.

I have a story to tell which makes me slightly frustrated when I think about it, but I’m over it. Last term I was having a bad tic day and in one of my classes a guy called me out. He came over to me during our work time and looked me in the face and asked me what was wrong. I told him that nothing was wrong, and that I was fine. Instead of just giving me the “you aren’t telling the truth” look and leaving me be, he pushed. “No”, he said, “What are you doing that for? Are you sick?” and proceeded to mimic what I was doing. Not in the mood to fight back, I just said it was nothing. He finally stopped and walked away when my friend sitting next to me told him that was enough, to leave me be. Walking away, the guy gave me look of disgusted confusion. I thanked my friend and we didn’t talk about it until later. It turns out that a few days after that happened in class, my friend saw the guy and told him that was he did was not appropriate and was rude. The guy was defensive and acted as though he hadn’t done anything wrong. When my friend told me about their interaction, I thanked him again because he did not need to fight my battle for me, but did anyway! Since then, I lost respect for the guy in my class. It is hard sometimes because I still know him and see him around campus. I stop my tics when I see him. I don’t want him to say anything about it again and I don’t want to put in the effort to explain it to him.

I wish that all people understood TS and didn’t think that I am the same as Tourettes Guy or the extreme portrayals in the media. When I meet someone for the first time, I never mention my TS. If they become a good friend of mine, I will tell them, but their reactions usually surprise me. Most of my good friends all say something to the effect of, “Yeah, I already knew, but I didn’t think it was important to say anything about it. It’s what you do” or “I didn’t know you had Tourettes, but I noticed you tic. I just thought, that’s you, it doesn’t change you.” I love hearing those responses because sometimes it is a burden to explain it again and again. With my close friends, I don’t feel like I have to explain myself, they understand that my brain is different than theirs and they don’t judge me for it. They never mimic me! I will say that sometimes I do go into great detail about my TS and the struggles in my life, but that is only to a select few. It is a vulnerable part of my and I need to trust a person before telling them.

These are my thoughts now, at age 19, a sophomore in college. Sometime I might post more of my story on here, but not yet!

My TS Musings 7/12/10

When people look at me for a split second, they probably don’t know what is boiling inside me. Without spending time with me, or knowing me for a long time, than they would have no idea what I have. Is it contagious? No. Is it strange? Yes. Would I want to not have it? Sometimes yes, but I am so used to having it, I wouldn’t know what to do with myself without it. Well, what do I have? I have Tourette syndrome. Tourettes is a neurobiological disorder, which causes me to move my body in ways that I cannot control. I sometimes I make noises, but not as often. I have always had tics as long as I remember. If I didn’t tic, I would feel off. My tics vary from shoulder movements, hitting my arm against my torso, flexing my neck, moving my head back (stretching my neck), and blinking.

You become accustomed to the pain. People think that we can control our movements if we have TS, and that telling us to stop will help. By drawing attention to our TS will only make tics worse, at least, mine become worse. It is horrible being in a place where everyone is being quiet, and they will know if you are making a noise. One embarrassing situation I had a while back was my parents and I went to the Oregon Shakespeare Festival to see a play. I can’t remember which play we saw, but I do remember which tic I had at the time. Before I finish the story, I should probably mention that my tics cycle, so I rarely have all of them at the same time. At that time, I had a tic that I made a quiet cough like noise in the back of my throat. While watching the play, I was ticking (Duh!). At the intermission, my mom said that she could hear me, and that I should move in between my parents so I wouldn’t disturb people next to me. My dad was on the other side of her, and hadn’t heard me, so they knew that people might not hear me if I was in the middle. I was mortified! At age 17, my mother was telling me that I had to move so I wouldn’t be a bother to others. I had never felt so embarrassed or singled out because of TS in my whole life. The only other times when it really bothers me is when people who I am becoming better friends with ask me. One instance, I was out on a first date with a guy I really liked (just so you know, we didn’t really date after the initial date, but we did hang out). While we were hanging out in Starbucks, I had a bad neck tic and blinking tic at the same time. You can assume what that would look like. Scary! Well, when I opened my eyes, I hoped that he hadn’t seen me tic, but he had. With a puzzled look on his face, he asked me what was wrong. I told him, because I didn’t want to lie. He was perfectly fine with it, but when I started talking about it, I just ticked more. Embarrassed, I covered my face with my hands. He told me that I didn’t need to be embarrassed, and he pulled my hands away from my face. It was really sweet.

One might wonder why am I calling Tourettes, TS. There is a logical reason behind that. When I refer to my Tourettes as TS, it makes me feel more normal. Meaning, when people ask if I am okay because I am making a weird face, it is easier to say, “Oh, I have TS. No biggie.” Granted, I usually have to explain what that is, but I prefer that. Or if my mother makes a comment about it, she usually uses the full term, which bothers me. By the way, I am making it seem as thought my mom always makes comments, she doesn’t. She just happens to say more things about it. Since my dad has it too (did I already mention that?) he understands, and doesn’t say much about it.

I wrote this when I was in high school and never finished it. My views are a little bit different now, but this was the first thing I wrote about my TS.

I will post my more recent opinions soon.