Friends

Everything happens for a reason. That’s something I try to tell myself often, even when it gets tough. However, it’s hard to think so when it comes to the questions that I ask myself; such as: “Why do I have TS? Why doesn’t anyone I know have it, but I do?” Yesterday at night, after I finished writing, I accidentally send an audio imessage to my friend Ray*. It was an audio of me, after a long day, releasing my vocal and motor tics. As soon as I realized what I had sent, I was more than mortified. Of course, Ray* and my friends all know I have Tourette Syndrome. They are supportive and look beyond my tics. That didn’t stop me from feeling embarrassed and ashamed of my TS as I realized what had happened. I texted my friend Ellen*, telling her how stupid I felt and how I hated myself. My friend, being the sweetest person ever, responded by saying: “you shouldn’t hate things that you can’t change about yourself. And honestly who cares I mean I certainly don’t. Okay you need to love yourself.” Then I received a text from Ray* saying that it’s okay, and that he punches things when he gets mad, too. That made me laugh. Apart from the thoughtfulness and understanding my friends provided me with, this small incident was not small for me at all. It proved to me that all things really do happen for a reason, and that good always comes after/with the bad.

(* Not their real names)

Our differences make us who we are

While growing up in two different places, I never really stood out in the crowd. I was just normal, in a good way I suppose, and I didn’t think much of it. Although I feared new environments due to my shyness, I was soon in America by the age of three. I spent five full and fun years and went back to Korea. As I recall I was very organized, did all my work, and focused perfectly well. Those were probably the few reasons why I didn’t expect myself to be in the position that I was, and still am now. I don’t think that I will forget the three years of my Tourette Syndrome experiences.

To begin with, I had never even heard of the word Tourette’s before I started to have tics. I don’t remember when it first started. I don’t think you can have tics, the constant movements or noises I make, all of a sudden. It might have happened slowly, but it also could have been rushed through, too. One thing I clearly remember is the time my mom and dad told me we were going to the doctor’s when I was eleven years old. They weren’t very specific, but I already suspected it was because of my head-shaking and eye-rolling. “But why?” I asked. When my dad answered the question, I started to yell that I would not go. That I was not mentally ill. But I had to, and I did. After waiting for an hour and half, (it was a very good and big hospital) and within minutes I was diagnosed with Tourette Syndrome. It was too much information that I did not understand at that point.

Although this post is not going to be purposely overly depressing, the first years were probably the hardest. It was when the truth hit me hard. My condition was worse than right now. Then, I had to accept the fact that I was “different.” Every time I looked around, I saw people. People just sitting, writing, laughing, playing. All doing so while staying still. But me? Why couldn’t I do the same? My Tourette Syndrome medicines increased to a high dose, and I started receiving antidepressants. I would have to answer the embarrassing question whenever I met someone: “Why do you do that?” There were a few times when some disturbing boys just had to imitate me, and I would get very emotional at those times. I would cry. I was never the one in control when it came to my tics. I was insecure enough―and I didn’t need them to point out the facts for me. And some days it was kind of annoying and depressing, unfair and just sad. For so many reasons, really. I hated when people who I didn’t even know stared at me as if I were strange, abnormal. I didn’t like how someone would judge me before they would even get to know me. It was inevitable, though. People would see my Tourette’s before they would see me. I didn’t like it.

Whenever I would share these kind of moments to adults, my doctor, parents, I felt like they would never fully, completely understand. I would spill the words out from my heart sometimes, but some days I would seal my mouth shut. I could never share these experiences to any of my Tourette’s-inexperienced friends, not even to my closest ones. They would never really get it. Even now, I’ve never really talked to them about it other than tell them about it. I knew that everyone was always there for me. But in a way, they weren’t because they would never truly know how it feels.

I sometimes admit that I think I have had a lot to benefit from having Tourette Syndrome. For example, I see more in people than I had before. I know what it’s like to be depressed. I understand how hard it is to be so hateful toward your own self. I know how sometimes, you don’t want to get out of bed; you just want to sleep forever. I also know that I’m no different than others. Our differences make us who we are.

But if you’re thinking having Tourette’s isn’t painful, or maybe not that bad let me tell you that you won’t want to have it. People stare. Your neck will hurt, and you’ll pretend to roll your neck naturally in school—oh, I’m just stretching—afraid people will notice. Anyone can use it against you; from petty girls to “Everyone likes me so I’m a good person” type of boys. It can be genetic, but in my case none of my parents had it. I could make a list of reasons why I don’t want it. When I look back at the past, I was a very sad third-grader. I was always stressed. I was this normal, popular girl in America, and when I came to Korea, I suddenly had these stupid, severe tics. I mostly cried everyday, and screamed a lot, too. I continued to read a lot. I only enjoyed reading English books, and it was one of my few remedies. I had only a few girl friends. Most of my friends were boys. I didn’t care though, until I got to fourth grade.

It was the first day of school in fourth grade, and as soon as I walked into the classroom, I was screwed. First of all, my tics were in bad condition. Especially my vocal tics, which are the sound tics. Second, I barely knew anyone in the classroom. ‘Forget good first impressions,’ I thought to myself. Almost everyone knew each other, which was very awkward for me. When I got to my seat I waited until my teacher came and until everyone was in the classroom. I still remember this, and I almost died of embarrassment, but I kept on clearing my throat. A boy, who was the most popular boy in our class later on, suddenly called out, “Who’s making that weird sound?” At the time no one knew except for me. Later on, everyone probably figured it out. It did not stop the girls from staring or constantly asking me why I was doing it or what I was doing.

I have recently watched a video called “I Have Tourette’s but Tourette’s Doesn’t Have Me.” I saw some things I already knew, one of them was there is at least one child with Tourette’s in every school in the U.S. It was one of those facts that I had to remind myself. In the video, I saw children between the ages of six to thirteen with Tourette’s. I found myself relating to them, especially a boy named Seth and a girl named Anna. When I heard her talking about seeking true friends, I ached because I remembered how bad I longed for a true friend for years. I cried while seeing Anna pounding her stomach, seeing her cry, scream, and talk. I cried because I saw myself. I cried because I felt her pain.

Even today, I am sensitive about my Tourette’s. I think it’s because knowing that I’m no different, and feeling like it are two different things. However, I am more truthful about it now. I have told a few of my friends what I have, because I think it is wise to. My doctor, thinks that I should tell my friends, too. I don’t think I’ll have to lie about it again. I am not embarrassed anymore. I previously had one incident, caused by my Tourette’s last year. It made me feel so many emotions at once and I quickly burst into tears. I don’t want to cry for something that is not even worthy of my tears. It’s been done too many times. I know my tics aren’t going to suddenly go away. I don’t expect them to. I know it takes time. I don’t have any stress or depression. I think the stress was one of the harder stages. I will continue to find my way, and the more I do, I think the more I will accept my Tourette Syndrome.

2017 NJCTS Youth Scholarship Award Essay: “That’s Life”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

TommyL

When I was twelve years old, I was sitting in the lunch room, and in an instant, the school went into lockdown. For most students this is not a serious issue. They stay quiet and out of sight. For me, lockdowns are a challenge because I have Tourette Syndrome (TS), a disorder characterized by involuntary movements and sounds called tics. While the rest of the cafeteria was quiet, I couldn’t help but involuntarily yelp and twitch my neck. It felt as though the eyes of the world were glaring at me with their ears wide open to the noises I was making. I was not expecting the comment that would hurt worse than the constant staring and whispers from that school year. This unlikely offender was a quiet, but kind person who sat in front of me and asked, “Why are you doing that? What’s wrong with you? Someone should put you in a cage or something!” It was at that moment that I knew that I had to speak out about Tourette Syndrome and advocate for myself.

About a month later, a person from the New Jersey Center for Tourette Syndrome and
Associated Disorders, Inc., came to my school and educated my peers about TS. During both presentations I stood up and stated that I had TS and I deserved respect. Through speaking out at the presentation, I became more confident and unafraid to say I have TS. In a span of six months, I went from being bullied, and afraid to feeling confident and free to be me. I learned through that entire experience that I wanted to be the one up in front of a crowd helping kids with TS come out of their shells. I later became a National Youth Ambassador and Patient Educator for Tourette Syndrome. I continued on to speak at schools, hospitals, and universities. My most rewarding experiences were when I spoke to children with TS and their peers.

Out of the adversity I have faced, I have learned to be resilient. I have developed thick
skin that has made every comment and stare bounce right off. I have learned to get back up after each defeat and push through to every victory. Throughout every tough event in life, I have turned to music to get through them. It is a known phenomenon that people with TS don’t tic while performing. Music is the reason that I wake up at 5:00 every morning to be at my before school choir class. Throughout my life I have had two passions: music and Tourette Syndrome. It is my hope to combine them into a career in music therapy. I hope to do research to figure out the correlation between the reprieve from tics and music in Tourette Syndrome patients. Hopefully, one day I will come up with a viable way to treat people with TS through music.

Through my past experiences I have learned to see each challenge as a gift. If I didn’t go through what I have in life, I wouldn’t be me or have done half the things I’ve accomplished over the years. My past experiences are what made me who I am today, and I wouldn’t change any part of them. They are what gave me the drive to be successful and create a positive change in the world. I will meet each new challenge and goal with the same intensity. I will continue to be resilient, because no matter what I do in life there will be staring, comments, and people who say I won’t succeed. If there is one thing I have learned, it is that people say many things, but they aren’t always right. Someday I will be living proof that nothing, and no one, will stop me from accomplishing my goals in life.

2017 NJCTS Youth Scholarship Award Essay: “Tourette Syndrome will always be a part of me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Trevor S.

At ten years old, I was diagnosed with Tourette Syndrome and it has had an impact on my life at first. Being so young, I did not really understand what Tourette Syndrome was, or what I was diagnosed with. It made it a little difficult to communicate with friends and let them know exactly what I was doing or why I ticced. One of the things that I wanted to do when I grew up was to learn more about Tourette Syndrome so I would learn more about me as a person. I moved to New Jersey two days before the start of my freshmen year. At the start of junior year, my mom found out about the [NJCTS Tim Howard Leadership] academy and it was an awesome experience. It helped me learned more about myself as I learned a lot more about TS than I previously had. The time I had at the academy left me feeling great that I finally understood who I was and I could explain to people about TS. I explained what TS was to my friends who were curious and I ended up becoming a youth advocate for TS. During the first couple months of school, I attended a presentation and answered questions for the students about TS. I have also attended two TS walks. I have recently been accepted to the academy again and look forward to attending it. Tourette Syndrome has had such an impact on my life that I do not believe I can imagine my life any other way. My letter for college was about Tourette Syndrome and how it had affected my life. I have been accepted into all but one of my colleges and have received the presidential scholarship at every university. Tourette Syndrome is, and will always be a part of me. It does make certain things interesting such as school and sports but it invites me to see new things. In school, I do well and I get to have extra times on my tests when it is needed. While there are some negatives, the positives outweigh the few negatives by a lot. I have made many new friends through the academy and other places and my knowledge in general has increased.

2017 NJCTS Youth Scholarship Award Essay: “The Same Kind of Different as Normal”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Rose P.

“All the world is full of suffering. It is all so full of overcoming.” – Helen Keller.

We never think of the simple tasks we do from day to day like getting dressed, making our bed in the morning, even just writing our name on a piece of paper as difficult. These are things that normal people take for granted, but in second grade these were my biggest struggles. I was constantly losing control of my body and then gaining it back just as fast. It’s a misunderstood neurological disorder called Tourette Syndrome.

As a child I didn’t understand what was happening, why I had changed and became so different from my classmates. Why I could no longer be just as normal as they were? I could still run, jump and play. I was constantly exhausted because even when I tried to sit still, my body was in constant motion. I often had to be sent home because I was unable to sit in my chair at school when my tics became too severe. Every day I would go to bed with the desire to be “normal.” Every morning I would wake up with the hope that one day my tics would go away. The only thing was, it never happened. Through it all I began to admire Helen Keller for how she lived her life and had been able to overcome being both deaf and blind and still learned to speak and go to college. I knew that if she could overcome her differences so could I. That one day I would be able to beat my Tourette Syndrome.

Even today I may struggle doing things when I have a day with more tics than usual. I have never let my Tourette Syndrome get in the way of what I want to do in school and in life. I am able to dance, perform in plays and compete both in swimming and on my school academic team. I have come to learn and accept that being different is being normal for me. The word normal can only be defined by how you see yourself and shouldn’t be defined by how others see you. I feel that because I am not as normal as others, I am able to understand people from a different point of view. I can better understand what people go through medically and emotionally when they are unsure of what may happen next. I have also wanted to help people my entire life. As a first grader, my dream job wasn’t to be an actress or movie star like other kids my age; I wanted to be a scientist and work at St. Jude’s Children’s Hospital to help cancer patients. I didn’t even know what cancer was, but I wanted to find out and make a difference. Now, my dream job is to be a nurse at the Children’s Hospital of Philadelphia. Tourettes has never stopped me from following my dreams before, and I don’t feel that it will stop me now, either. I was able to overcome many things as a child; I still do every day of my life. Being a nurse will allow me to help the children who may be going through their hardest life challenges, whether they have cancer, or another disease or disorder. I will not only be able to help them medically, but I will be able to show them that if you are determined enough to do something, anything is possible. Just because you have a disability or disorder doesn’t mean you have to live your life as such. We all determine our own destinies in life, for me that’s beating Tourette Syndrome and becoming a nurse. Normal and different is only what you make of it. It doesn’t matter how others see you. You are your own kind of normal and that’s the best kind there is.

2017 NJCTS Youth Scholarship Award Essay: “Life’s a Twitch”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Anna B.

One of my all time favorite quotes is by Scott Hamilton, “The only disability in life is a bad attitude.” From my own experience, I can honestly say this is very true. Life with Tourette is very unpredictable and sometimes you just have to learn to roll with the punches. I am not always the best at this, according to my parents my attitude is, “less than awesome.” At least it used to be, with age and acceptance it has improved tremendously.  

As a twelve year old who’s tics were becoming more obvious by the day, I decided to make a difference. I wasn’t going to let my so called ‘disability’ hold me back. I knew without explaining myself the kids at school were going to make fun of me because they didn’t understand. That’s why I did research and wrote my own speech to present. If the kids are uneducated and pick on me it’s just because they don’t understand, but if they understand and still are unwilling to accept me then that’s their problem. I gave my very first speech to my class in the sixth grade which coincidentally was also the day I got my diagnoses. All the positive reactions empowered me. During my research I came across the National Tourette Syndrome Association’s Youth Ambassador Training program in Washington, DC, and the New Jersey Center for Tourette Syndrome (NJCTS). I was trained to be an advocate for TS and given a presentation to use in schools. I began presenting professionally to small classrooms but it wasn’t until I became involved with NJCTS that I really began making a difference. I attended the first patient center education training and another training on how to present in classrooms. My sophomore year of high school I spoke to around 50 doctors and other medical professionals about Tourette. Every presentation I did gave me a little boost of confidence, which for a shy kid was life changing.

Though my transition through it all seemed like smooth sailing was far from it. To put it gently, freshman year I was a hot mess. I had developed coprolalia and let it get the better of me. My bad attitude really was crippling. I focused on what was going wrong instead of focusing on how I could use it to my advantage. [NJCTS Family Retreat Weekend at] Camp Bernie changed that for me. I made amazing friends who I am actually talking to as a write this four years later. Hearing their experiences and sharing coping techniques was huge for me. Being in a place where my differences were not only accepted, but embraced as well, was utterly life changing. Steven, a teacher who also struggles with coprolalia, made me realize that even if I didn’t improve I could still be successful and teach special education as well. Once I was able to come to terms with my Tourette I was able to help others do the same.  

Now I am a happy, successful, eighteen year old pursuing my dreams and doing my best to empower those around me to do the same. My favorite example of this was a presentation I did a few years back. A third boy was being bullied for his TS so I did a presentation at his school. After the presentation, he came up to me and said, “Thank you, I think I’m going to have friends now.” It all starts with a good attitude and self acceptance.

2017 NJCTS Youth Scholarship Award Essay: “Growing Up with Tourette”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Tess K.

Eleven years ago: I sit, legs crossed, looking down at the brightly colored shapes and
letters covering the carpet below me. I’m in my kindergarten classroom. The teacher walks through the door and abruptly stops. “Tess, are you crying again?” I squeeze my eyes shut and desperately attempt to stop the tears. My teacher stares at me. She’s disappointed, I can tell. “Do I need to call your parents again to take you home?” I nod and get up to follow her out of my classroom.

Getting home always felt good, like I was finally in a place where I could be me. My six year old self never questioned why I felt so out of place; I would just cry in my room because something felt fundamentally wrong. Five months after kindergarten began, I finally realized why. I began to hear countless adults tell me, “You have Tourette Syndrome which means you will experience some movements and sounds that you won’t be able to control, but don’t worry, you’re ok.” However, no matter how many times I heard these words and saw the encouraging smiles that so often came with that sentence, I was still scared. I wondered why I couldn’t finish a sentence without uncontrollably sniffing, or why I couldn’t stop blinking. I didn’t want to do these things, and I hated that I wasn’t in control of my body. I barely understood what I had been diagnosed with, and the unknown terrified me.

For six years, I hid my Tourette. I only told my closest friends and family, and I relied on my parents to explain my situation to anyone else. My coping mechanisms were successful, but nevertheless untruthful. I would lie about my Tourette, telling people I just had a cold or there was something in my eye. Every time I made another excuse I felt guilty about hiding who I really was. My life was good, but I still lacked the necessary skills to advocate for myself and others with Tourette.

Five years ago: I stand in my synagogue, pacing back and forth, holding a speech, my speech, tightly in my hands. I see people file into the room. I start to shake, doubting myself and the decision I have made. Hello everyone, my name is Tess. I’m in 7th grade, and I’m here to talk to you today about a neurological condition I have, called Tourette Syndrome. I think to myself: Can I really say these words and can I say them with confidence? I walk up to the front of the room. I take a deep breath, calming my body and mind. I smile and begin. I hear my voice, a strong powerful voice I barely recognize. I think: Is this really me? Am I really doing this? I am.

Present Day: I sometimes recall memories of when I gave my first talk. It’s hard to even
remember that scared little girl I used to be. From the moment I finished that speech I knew I was not that child anymore. Now I proudly advocate for my disorder and I am not embarrassed about who I am. I want to become a voice for kids who haven’t found theirs yet. I present in classrooms to students with Tourette so they don’t feel the need to hide their disorder in school. I present in hospitals to doctors to share my personal struggles and story. I am finally comfortable in my own skin.

The Future: Educating others and explaining how important it is to accept one another is something I will always be passionate about. I’ve made it my goal to publicly speak about Tourette whenever I can. I want to continue doing this throughout my life. I will always make it my mission to share as much knowledge about Tourette as I possibly can, because then hopefully someday others will too.

2017 NJCTS Youth Scholarship Award Essay: “What It’s Like to Be Me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest. I hope you enjoy it!

Rachel M.

I have Tourette but Tourette does not have me. I have told myself this from day one, when I was diagnosed at 5 years old with Tourette Syndrome. It is a part of me and I let it help describe what kind of person I am. I feel like I am stronger because I have had to deal with this; more aware that I have seen other people just like me and some even worse; smarter because I now know how to deal with my disorder and how to figure out my goals. There are times when it gets rough but I learn from those times; how to handle my body differently; how to distract myself so I do not hurt myself; how to advocate for myself and how to make up work quickly at school; how to calm myself down. Things that help with my tics, are things like, petting an animal, crafting something (like a wreath), playing games on my phone, playing on my laptop, hanging with my friends, getting a hug, and just concentrating on something for a while. Since there is no specific medicine to cure Tourette, it has been experiments from day one. Try this, and try that. It gets frustrating when things do not work and it is relieving when medicines decide to help. And sometimes, the side effects from the medicine were not worth it. It was actually better to be ticcing than to be on a medicine that made me gain tons of weight, or have changes in my hormones, or get a huge permanent birthmark. From first grade through middle school, I would stand in front of my class and advocate for myself; telling my classmates about my disorder. I loved hearing when they had questions. It showed that they wanted to understand more about my condition and more about me. There were some kids that were not so nice, but everyone has those kids, regardless of if you have a disorder or not. I just kept myself away from those kids and kept moving forward. In high school, all the bullying magically stopped. It was probably because I completely switched school districts. But, I do have to admit that there were times where those kids got to me; made me wonder why I was not born “normal”. But in reality, there is no normal. You can be, whoever you want to be in life. I learned not to be the person that everyone wants you to be, but be the person that you want to be. Be a person that satisfies you. Do not let anyone stand in your way just because you have a disorder or you have acne, or you are not as smart as some of the other kids. That is just you. You are special in your own way. I have learned that throughout my years of dealing with this disorder, I cannot stop it. I could not prevent it. I was born with it. Just like people are born with blue eyes or freckles. Be who you want to be in life. Don’t let anyone or anything hold you back. I am living the life I want to live. I am making something of myself. I am going to succeed. For a while, I let my tics overtake me. And I was just getting lower and lower. I did not know if they would ever let up and stop. Finally my friends told me to hold my head high again and push through. So I did. And yes it was hard. But I succeeded. Maybe I will be able to tell more people about my disorder, the older I get. Maybe I can learn to advocate for myself better so that I can create a club. Maybe I can meet more people with similar or even the same disorder and we can discuss our problems and how we overcame them.

2017 NJCTS Youth Scholarship Award Essay: “The Imaginator”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

MichaelP

It was Halloween season and the teacher handed out gigantic Goosebumps posters. Without warning, they exploded into a creature made from green ooze, multiplying, contaminating, and encroaching the whole school. The creature splattered out like syrup that someone had microwaved. Its mere presence made me falter, go numb, and want to scream. Terrified and alone, I was surrounded by classmates who were now infected by a horrific parasitic slime. I hid under a desk to protect myself.

For months, this surreal episode haunted me in school every day. Eventually, I was diagnosed with Tourette Syndrome, Obsessive Compulsive Disorder, and General Anxiety Disorder. My motor tics were both involuntary and compulsive. I also created mental compulsions in my imagination to combat anything ‘bad’ to keep me safe: First, I focused on my defense, using my mind to create an energy shield all around me. I then built up my offense: I kept billowing imaginary fire from my body to blast and obliterate the green slime until it burned up into clear smoke.

I had to be home-schooled for a year before returning to middle school. At one point, I wondered exactly how long I would live with these disorders. With the support of many people, I slowly gained better control of my tics and compulsions. I was gradually integrated academically and socially. I learned to control my ‘imagination’, to bend it to my will, and master it instead of letting it run wild. It was no longer a curse; it was a blessing. I gradually developed the ability to harness the power of my imagination to help me face my circumstances and view my world in new and unique perspectives.

When I had few friends, I created my own friends and various worlds in my mind.  These friends were different versions of me: a hero, an explorer, a swimmer – all different types of characters with their own personalities.  They shared with me their stories and aspirations. They whipped me back into shape when I needed some tough love. They reassured me it was cool to wear “socks with Crocs”, and honorable to stand up for a friend being mocked. I was determined to be an independent thinker who does not follow the masses or seek approval from my peers.

Nowadays, I rarely need to purge my fears with imaginary fire. I no longer need the crutch of my imaginary friends. My imagination has become my arsenal of inspiration. During swim races, I create vivid images of a world where water becomes air, pierced through by my wings as I fly through the air like a falcon. Other times, I become a jet fighter flying over the Pacific, touching down on an aircraft carrier. Each time I finish the race into the wall, it is like my wheels slamming upon the metal deck of the carrier as I screech to a halt. When I study Chinese characters, the lines move, forms bend, and shapes dissolve to reappear in my mind as pictograms that the characters once originated from. The pictograms become animated images. The Chinese characters literally become characters with dialogues and actions in a story.

The images and stories in my customized universe, created by my ever-active imagination, have become the source of my strength and my vision. They encourage me to overcome the impossible and inspire me to reach beyond the seeable and the thinkable. The characters and creatures are akin to my children; they are my legacy. I have a spot for every one of them in this technological age of virtual worlds and merged reality, where anything is possible in video games and digital animation. I dream of bringing them to life and turning their stories and their worlds into stunning, exciting, and unique sensory adventures.

As I reflect on my TS and OCD experience, it’s hard to believe I was that fragile kid and how far I have traveled in this journey. Through force of will and discipline, and with the support of many people, I steadily overcame my adversity. I have learned to face down my fears and stand up to negativity. I am more confident with who I am, and more compassionate towards other people’s unique situations. Since my symptoms never truly disappear, they are daily reminders to keep fighting. Working extra hard and advocating for myself, I have come to terms with who I am. I look forward to a bright future.

I have this thing…

Do you know that feeling when you have something to say but you don’t know how to say it? It’s like you know the thoughts and you can feel the emotions, but you don’t know the words.

Every morning you wake up, brush your teeth, put some clothes on, eat some food, go to school or work, meet people, eat food in between, come home, do more work, eat more food, wrap up, and go to sleep only to repeat it all over again the next day, and the day after that, and so on.

And each day when you go through your routine, you think:

Nothing’s wrong

Because the fact is, you can’t put into words exactly what is wrong. It’s like you’re forgetting something.

No, not some ‘thing’, some ‘thought’

And not ‘forgetting’, more like ‘needing to know’

You don’t know what it is you’re supposed to think but it’s there in your brain. It’s an abstract, mind boggling idea churning through you like you’re in the middle of a giant city and you just. Don’t. Know.

You don’t know what you’re supposed to be doing

Or where you are supposed to be going

Or even who you’re supposed to be.

All you know is:

Where you are now.

There is something that has been plaguing me for 9 years. 9 and a half actually. It’s very real, it’s very alive, it’s something that I can’t change. And it’s taken me this long to come to terms with it.

I have this thing, which causes me to be awkward in public—not in what I say, but more in what I do.

I have this thing, which causes people to look at me weirdly—not that I’m disgusting but more like I’m crazy and mental, and not in a good way.

I have this thing which causes me to be so self conscious but at the same time in the heat of the moment I forget I have that thing until someone reminds me with just one look, one laugh, one smirk.

I have this thing…

I have tics.

No, not ticks like from deer that make you break out into rashes and look like a tomato.

According the Merriam Webster a tic is:

Full:

“Local and habitual spasmodic motion of particular muscles especially of the face. A frequent usually unconscious quirk of behavior or speech <”you know” is a verbal tic>”

Simple:

“A small repeated movement of a muscle especially in the face that cannot be controlled. A word or phrase that someone frequently says or an action that someone frequently does without intending to.”

Cannot be controlled. Without intending to. Unconscious.

People don’t see that. All people see are the spasms and the repeated movements and the frequent words or actions. All they see is what annoys them and not what the person is going through—they see the funny weird things that they don’t know about and they laugh, they imitate, they take someone’s weakness and exploit it.

Because that’s all it is…

A thing.

A thing with no cure, a thing that doesn’t go away, a thing I am stuck with for the rest of my life.

I can’t even have a conversation with someone without getting stared at. I know in the other person’s head they’re thinking, “What is that? What is she doing?” because it’s written all over their face.

What am I doing?

I want you to open your eyes, right now, and keep them open…

Still keep them open.

And open

Did you blink yet? Eventually, you will because after some time you will blink naturally. This is how I feel every day. The unexplainable need to go through with the action is, to me, as automatic as blinking is to you.

But what are these actions?

Tics are either motor or vocal. Motor tics consist of nose twitching, hair fixing, obsessive touching, face grimacing, hand stressing, and more. Vocal tics involve grunting, humming, blowing, or saying actual words, like curses. They worsen when under stressful conditions, but are also temporary until the next need arises.

Around 200,000 people in the U.S have the condition, however there is no exact number because many people are not diagnosed. Symptoms typically show in adolescent years and over time, most people improve. This condition isn’t something I just picked up from someone sneezing, its genetic, passed down through many ways but to me specifically, from my aunt.

Treatments include taking drugs that make you feel like you’re drunk.

Sometimes I want to feel like I’m drunk. When I’m all alone in my bedroom on a Friday night because no one wants to be associated with the mental girl. When I’m on my way back from the bathroom and I overhear my cousins laughing at what I was doing, imitating me.  When my parents are yelling at me to stop because they don’t understand that I can’t stop, that I don’t know how to stop. And I don’t know how to tell them, any of them, about what I have.

How do you tell someone that you have a disorder?

Sometimes I feel like I’m gay and I’m coming out of the closet, except I’m not gay and there is no actual closet… I want to scream at the world that I am in fact not crazy, that what I do is not uncommon, that just because I do weird things on the outside doesn’t mean I’m a bad person on the inside. I wish that I could make people understand what I have.

*          *          *          *          *          *          *          *          *

I miss the me that I was back then. Years ago, when we were all friends—laughing and smiling. Not worried about impressing anyone or our looks or being the best. When we were just. Us.

Now, we worry. We worry about who is dressed the best and who has the most followers on Instagram, and likes, and pictures. We worry about making that shot in basketball to impress a girl or worrying about not tripping over our heels while we are already tripping over our words to impress a guy. We worry and we worry and we worry, about being like everyone else, about fitting in, about being liked and loved, about having friends and being popular. But never do we actually take the time to think about ourselves.

Life is made up of moments. Hard fast and blinding moments and when they pass they pass only to make room for more moments. And those moments make you, You. I have a moment, a hard fast and blinding moment, where I realized I have a thing—a thing that makes me, Me.