2014 NJCTS Children’s Scholarship Award Essay: “I’m Not a Diagnosis”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

I always want to be seen as the person I am, not as a diagnosis. I have very high functioning Autism and need social support and academic accommodations. I am creative, musical, artistic and have a great sense of humor. I also have ADHD and Tourette Syndrome.

I have been to some clinics for Tourette Syndrome, such as a clinic at The University of Alabama at Birmingham. That’s right, I had to fly from New Jersey to Atlanta, then hop on another flight to Alabama. The people at the clinic were so sweet and polite. They even offered me tickets to a football game at the school’s stadium as a result of telling them that I am in the marching band.

Having Tourette Syndrome is a challenge I have to deal with in life, and although I live with that challenge every day, I have acquired tools that help me cope.

My life has never been what one would call “easy.” Three months after I turned 8, my parents sent me to a residential school to help “at-risk” youth. My time there was spent teaching me how to deal with the frustration that my disabilities give me. I needed to learn how to calmly communicate without being overly emotional.

This was quite a challenge because I was only eight, The School was called The Andrus Children’s Center. Being apart from my parents was a very difficult experience, They came on weekends and eventually took me home on weekends so I could practice the skills I had learned.

I grew a lot as an individual at Andrus.

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Finding my voice

I can write a 20-page letter to someone in which I share my deepest secrets and fears. When I write, I can say things that I have never told another soul in my life. If I sit down to talk to another person face to face, you can just forget it. I will sit and stare at that person for hours and not say a word. I don’t understand it. It’s as if my mind freezes up and the words just refuse to come out.

Take the things I have written on this blog for example. I can not imagine saying these things out loud. Possibly, one day, I may just randomly acquire the ability to speak what is on my mind. I have not been able to as of yet.

In fact, I have had to keep journals for therapy and counseling. If it were not for me writing during the time between appointments with the therapists and counselors I have seen, I would not have been able to share any information with them. I have rehearsed conversations in my head before arriving at their offices to prepare myself so that maybe I will find the courage to say the things that I have felt and thought out loud. I have not yet mastered this skill.

My fiancé can confirm this fact. When we first met, I was totally out of my element. We were at my cousins’ house for a housewarming party. I knew most of the people who were present. Most of them were people I had not seen or talked to in years, though. I definitely had not seen them or talked to them since my Tourette’s had become so prominent, and I am sure most of them did not even know that I had been diagnosed with Tourette’s. I know they definitely did not know of the other things I had dealt with over the last several years.

Meeting new people makes me nervous and anxious. So, when my fiancé introduced himself, I was quite backward and seemed very indifferent to him. I was in a fairly large group of people. I was loud and twitchy and just wanted to get somewhere I could let my tics out in full force and be completely comfortable with myself. I try to put on an air of not caring what people think and perceive of me, but I think that if we are all truly and completely honest with ourselves, we all care at least a small bit at times. Perhaps not all the time, but we all find ourselves feeling self-conscious at times.

I have always been terrified of showing my feelings. I guess I am really afraid of being hurt by reactions to what I feel.

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It’s tough having so little control of my body

Had a rough night over the weekend. I went out to dinner with my friends and then went to their room to hang out, and all night my tics were really rough. It was the first time in about a year or more that I have cried about having TS.

I have a new tic where I say “I hate you.” I was clearly upset by this tic and was having a rough night in the first place, but then this guy who I’m kind of friends with but not close to said, “You should really try to change that tic” in reference to my “I hate you” tic.

This really hit me hard. I’m usually not very sensitive about these kinds of things, but I’ve never had someone suggest that I should try to change a tic. It really made me mad and emotional in general. If I could change the tic or choose not to say a certain thing, then why the heck would I be saying it in the first place?

If I could just choose which tics I could have or not have, then why would I choose to hit myself in the chest and stomach until I was in pain? Why would I choose to shout and make noises in class? Why would I choose to say things like “No” and “I hate you”?

I knew I was going to break down crying in a few minutes, so I quickly said I was going to go back to my room and left. I went back to my room and cried. Then my other friend who I’m very close to came and knocked on my door.

I’m really glad he realized I was upset and came over to talk because I really needed that. He knew something was wrong and asked and I told him. I told him that what the guy said to me hurt. I told him that I can’t just change my tics and that I can’t control it, things he already knew.

I told him how the comment pointed out in an all to poignant way to me how little control I have. He offered to stay with me and talk until I felt better, but I told him I just took some medicine and was going to sleep, but I really just wanted to be alone.

He also offered to go to brunch with me. That I took him up on. All in all, it was an emotional Valentine’s Day, a day where I truly felt the emotional effects having so little control of my body has on me.

My new video: “Wallpaper”

Hi everyone! Merry Christmas if you celebrate it. I finally posted a new song/video. If you have a minute, I’d really appreciate it if you could watch it. It’s called “Wallpaper,” inspired by troubling times and dark parts of my mind.

I wrote this song about nine months ago when I was going through a rough time, and honestly, I never really thought that I’d pick it up again after that night. Most things I write end up on the floor, but I’m happy that out of all the songs I chose to bring to life, that this was one of them. Bringing all the visuals and emotions that I envisioned together was indescribable. I’m hoping to maybe do some work in videography/film directing when I’m older.

I directed and edited almost the entire video out of my house. A good friend, who is also a very talented photographer, Lindsay Ralph, helped with the actual video shooting, lighting and make-up touch-ups. Can’t thank her enough! The painting in the video actually hangs in the hallway off our kitchen. The kids that I worked with were phenomenal and I’m amazed by how well they performed and took direction.

It was interesting to take these child models that are usually prepped and primped to look perfect, and turn them into the opposite; the “broken” people of society that we don’t see. It was all a really natural vibe, and really real as well. In the end, the entire thing was lots of fun to put together, although stressful at times, it was mostly fun. I know I haven’t posted in several months and I apologize for that; the support I receive every day is appreciated. Thank-you can’t even do the justice.

If anyone has any questions about anything at all, free feel to ask! Hope you like it enough to share it with your friends 🙂

Changing lives with “The Space Between You And Me”

The Space Between You And Me is a powerful art installation that moves people who experience it. It’s a captivating exhibit, managing to express what it’s like to have Tourette Syndrome through footage of interviews with youth with TS and interpretive dance inspired by the disorder, all projected onto a series of transparent and semi transparent screens and mirrored in various reflective materials.

At a recent exhibition attended by hundreds of students, one teenager said that The Space Between You And Me had “changed her.” Evidence of the profound effect this project has on teenagers can be found in a blog on the official project website, where teens share their own inspired thoughts and feelings on a range of issues.

Why does The Space Between You And Me strike such a chord with teenagers? No doubt it has something to do with the installation’s theme, and the special young person who sparked its creators. From the official website:

Paige Tomashewsky, the teen who inspired the creation of the project, suggested the title for The Space Between You And Me. Paige’s TS has forced her at times to keep a space between herself and others for their protection. Students always left a space around her at assemblies and in line-ups. Although she always understood the need for this, it was still very painful.

Even given theses boundaries she has a lot of friends who know the price of being in her space but they willingly accept it. The space is the physical and emotional gap that TS creates for Paige. Sometimes it is to protect her from people’s judgments or to protect others from the dangers her tics can cause. Continue reading

Are emotions real?

Sometimes I feel that my emotions aren’t real. I feel nervous about something or unhappy about something or stressed, but I feel like I try to block that emotion out and not feel it. I think I’m just so used to blocking my emotions about things that it’s actually only rarely that I feel an emotion to its full extent.

In my life, I have had to do so much emotion blocking and distancing myself from a situation that it is almost second nature. I had to distance myself when I was bullied in elementary school about my tics and when after I was diagnosed my parents didn’t really accept or want to believe that I have Tourette’s. I have to distance myself from the stares when I am ticcing, washing my hands for too long in the bathroom, or panicking and having anxiety in a store and am not acting like myself at all.

Distancing myself and blocking my emotions is something I do on a daily basis without even consciously thinking about it. Today, though, is one of those rare days where I cannot distance myself or block out my emotions. I am nervous, scared and worried about going back to college and having to meet new people and be in new classes and have to educate over and over again about my Tourette’s for gosh knows how long.

I am nervous and scared and worried in a real way that I can’t block out. I don’t want to go out of the house today, which is really the opposite of what I am usually like because I am usually always wanting to be on the go or always doing something.

When an emotion like this hits me hard, I feel like I am “stuck” in a way and don’t really want to do much of anything. Even writing this blog post is something I originally didn’t want to do. It feels like someone flipped a switch in my brain and put me in a completely different mental state than I was yesterday.

Yesterday I was so excited about going back to college and seeing my friends and was actually excited about getting to educate about my Tourette’s. I still feel that to some extent, but mostly I feel scared and anxious now.

I wish I could flip the switch back to where I was yesterday, but it’s like I can’t find the switch right now. I know though that this, too, will pass and that probably in a day or two I will find that switch. It will help a lot when I actually move back in with my friends from college and start getting into it.

The worst part of anything for me is the anticipation, and I have to keep that in mind in times like these. The anxiety and emotions that come with anticipation of something that’s coming up is always 100 percent worse than the actual situation itself.

When I’m in the situation, I tend to be fine, but it never feels like it’s going to be that way. I just want someone to rip of the band-aid right now though. I am fed up with the anticipation and the waiting! Four more days, though, until I move back, which feels both like a very long time and a very short time.

Camp is over, but it’s never REALLY over

Camp is one heck of an amazing place! I miss it so much already! I’m still speaking about camp in the present tense when I tell people camp stories right now. I refuse to speak about it like it is over. I am in denial that we are back in the real world. I cried quite a bit again now that I am home and realizing that camp is really over.

My awesome co-counselor, Becca, helped me calm down, though, and I have stopped crying for now, but know I will cry at least one more time in the next few days or maybe many more times. I just want to go back to camp or want all my camp friends to come live with me in St. Louis. Love you all, and of course I miss my amazing campers, too.

I just have to try to keep in mind what one of my campers said, that camp lasts all year because your memories of camp and the support from the people at camp who now care about you so much and will be there for you when you need them is always with you no matter where you are physically.

These girls are all so mature for their age. Many of them have to be to get though all they have gone through. Most of the time, the amazing words that come out of their mouths both surprise me deeply and touch me. This is what will get me though the year until camp again next summer. Hope this post makes some since even though I am super tired and teary-eyed right now . Just had to say this.

TS Documentary Preview #2: Meet Sam from New York

Hey everyone! As many of you may know from visiting my A Little Bit Different: Tourette Syndrome Facebook page, I’m in the middle of putting together another TS documentary with LoganK from Help Spread The Word About Tourette Syndrome. I thought I’d give you all a sneak peak at a few of the profiles going into that documentary.

Earlier today, I started with me. Now, you get to meet Sam from New York. Be nice to her! And to look at some of the rest, just check out the documentary album on my Facebook page!

My name is Sam, I am 13 and I live in Watertown, N.Y. I have had Tourette Syndrome since third grade … I believe I was 7 or 8 years old when the tics began. I have many tics right now. My most common tic is to crack my elbows and shoulders and also stretch my back.

I gag when something is gross, but the gag has to make a certain sound to be just right. I have had tics that I hardly notice and ones that are severe. When I go out in public, I get body tics and begin to bend at the waist. I crack almost every bone and I also bite my tongue.

The physical and emotional pain, that is the hardest part about having TS. Tics cause physical pain, and the people who don’t understand cause the emotional pain.

I am a kind person and I love playing volleyball, art, music, playing guitar, and I also love laughing. I’m a great big sister and friend. I just wish people knew that I do struggle with TS, even if I dont show it. But you have to live life, and I do my best to live my life happy.

It’s not easy when others do not understand TS and judge me or assume things. I am a lot like those without TS — I have passions and dreams — except sometimes I work a little harder to go after what I want. And sometimes, no matter how hard I try, someone gets in my way — or TS does.