The future

Hey everyone, this first appeared on my Life’s A Twitch blog site back in July, but I wanted to share it here, too. Thanks for reading!

I’m kind of in a rough spot right now. I used to always have everything planned out. I knew my future and I knew what I wanted. Now that I’m getting closer to college, I’m not sure what I want to do anymore. It’s really affecting me. I like to have everything planned out right away. It’s part of my OCD. I live about three years in the future constantly. I can’t see anything in front of me.

I’m going into junior year of high school and I feel like I’m starting sophomore year of college. I do not see a computer in front of me. I see a small laptop in a tiny dorm room. I don’t see three large windows next to me. I see a loft bed and tons of textbooks. I can’t live in the present. It’s not how I work.

I need to live so far ahead that I know everything is going to be OK. I am going to be 16 years old in two months and I do not know how to drive. I have not even considered Drivers Ed in the past because of my Tourette’s. I have driven before on a few back roads, and it was terrifying. I kept taking my hands off the wheel and my eyes off the road to tic. Driving is a sort of trigger for tics.

As you already know, I don’t live in the present. Three years from now, in college, I need to be able to know how to drive. I can’t drive at the moment and I need to be able to. It is all a part of the plan. If I look farther in the future, I need to drive to my job, right?

All of you know it is true. Everyone has to do it. Go to college, get a job, get married, buy a house, have kids, retire, die. This is how life works. I want to go to college, get a job, get married, and have kids, but how can I? My Tourette’s is in the way of everything.

I know a lot of people with Tourette’s say they can drive, but I can’t. I’ve tried. If I can’t drive, I can’t conform to a normal life. Maybe I’m not meant to do things the normal way.

My Tourettes has been really bad lately. I don’t know how I’m getting through it, but I am. I haven’t been depressed for a while now, thankfully, but suicide has crossed my mind. It crosses every person’s mind though, doesn’t it?

What isn’t so normal is that today I got really stressed out about my future and then it started blurring. I didn’t want to have a plan anymore. It all seemed to be falling apart. How in the world could I accomplish anything I wanted to do? What did I even want to do?

I started planning a suicide. I think a lot of people do that, though. Maybe I’m wrong. Maybe I’m part of the not so many that actually stress out to the point that they start planning their own demise. I was so sure that tonight I was going to swallow a bunch of pills and it would all be gone. Everything would be gone. I would be gone. I wouldn’t have to worry about anything anymore. I wouldn’t have to tic. I wouldn’t get depressed from time to time. I wouldn’t be planning everything in my future, because I wouldn’t have a future. It sounded so nice to be done with everything.

Even so, there are so many repercussions from a suicide. I’m sure my family would be devastated. I’m sure my friends would be upset. A lot of times when the thoughts come to me, I think that no one loves me and that no one would care if I was gone.

Today the thoughts did not come. It was nothing like the times I was depressed out of my mind. It was not like when I felt worthless. It was different. I was stressed out of my mind and upset. I wanted to be gone. When I was able to calm down, I was still thinking about a suicide, but after putting everything into perspective, I decided against it.

I still don’t really know what my future holds, and that scares me. I like control. I like being able to know where everything and everyone is and everything that is going to happen. I don’t like that my future is shaky and blurry and that I can’t see into it. I don’t have a definite future, and it’s so frightening. I feel stressed, not in control, and unhappy, but most of all, I feel scared.

How others view my Tourette’s

The other day my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak, I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished.

Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette’s. I told her that she has my permission to educate all future guests about my Tourette’s and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette’s, which she found helpful as well.

She must have done a very good job educating our guest poet for today because I had no troubles at all. Professor B didn’t even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class.

I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high-pitched squeaks, a sound that sounds like “uh” “uh” or “ah” “ah”, and my tic where I say “woof”.

I really appreciated this positive experience with a new professor, who I had never even met before personally, and was very impressed with my professor’s ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling, though, when I’m having a lot of tics in a class or when I meet a new professor or adult that I haven’t previously talked with about my Tourette’s that the professor or adult has an automatic negative feeling toward me and my tics or is annoyed by them or doesn’t like me because of my Tourette’s. Continue reading

What is Tourette’s?

Tourette’s. It’s the thing you didn’t ask for. The thing you don’t want.

It’s there. But not just there. It’s much more than just there. It’s on your body. In your body. All over your body. What can you do? Nothing.

Tourette’s. The last thing on this Earth that I could see myself being completely grateful for. Sure, it connects me to others who have TS as well, but what other good is it?

Tourette’s. Worse than any of my depressive episodes. I can’t sleep. I can’t sit. I just move. I move, I move, I move.

Tourette’s. Pop some pills and pray for the storm to calm down. Hope that you’ll be better soon. Aspire to find a cure, but then never go to medical school.

Tourette’s. It’s the thing you didn’t want. It’s the thing that’s the most there. It consumes you. It takes you in. It holds you tight and whispers in your ears, “I’m never letting go”.

Tourette’s. It’s a hell of a ride. Ups and downs, ups and downs. It takes you not only on a physical, but an emotional roller coaster ride. Up. Down. Up. Down.

Tourette’s. You ask it to leave, then you plead. Leave, please. It won’t. It’s an unwelcome guest that stays in your mind and dictates your movements and sounds.

Tourette’s. It’s like that one person that you can’t stand, but have to keep around because they are a family friend or something like that. Except Tourette’s wouldn’t be a family friend. It would be a nemesis of any family. Consuming sons and daughters and taking them on wild unsupervised trips.

Tourette’s. It won’t define you. You tic, you think. You do so many things. So much noise. So much movement. But, that’s not you. You’re not Tourette’s. You’re you. You’re different and better than Tourette’s.

Tourette’s. A neurobiological disorder. A nuisance. It’s there and it won’t go away. It sits there at the controls of your brain and tugs. It tugs at the controls and bangs on the buttons that control your central nervous system.

Tourette’s. 3 AM. You’re not asleep. You took your medicine. Why are you still ticcing?

Tourette’s. It’s the worst thing that’s ever happened to you. Worse than your dog dying or losing your favorite teddy bear. Worse than even losing a loved one.

Tourette’s. Tic, tic, tic, tic, tic. Will it stop? Ask it. It won’t answer. It just sits at the controls and bangs. Bang, bang, bang. It won’t listen to you. It hates you. You hate it. You’re your own enemy. Except you aren’t Tourette’s. It is not you. Remember that.

Tourette’s. The distractions won’t work. Why aren’t the medicines kicking in? What’s going on? Why is this rough patch lasting so long?

Tourette’s. It’s the thing you didn’t ask for. The thing you didn’t want.

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

WANTED: Teens for new TS clinical research trial

Dr. Roger Kurlan of the Atlantic Neuroscience Institute at Overlook Medical Center in Summit, N.J., is currently recruiting for a clinical research trial for a potential new medication for Tourette Syndrome. Participants must be between the ages of 12 and 17, and must pass a screening evaluation to be sure they are eligible. For more information, please contact Diane Babek, RN, at 908-598-7991 or

New Jersey teens headed to Yale to talk Tourette with resident physicians

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) and its renowned Patient-Centered Medical Education (PCME) Program will take center stage during a”Tourette Syndrome Youth Advocates: A Patient-Centered Education Model in Action” grand rounds presentation at 1 p.m. Tuesday, October 8, at the Yale School of Medicine.

Giving the presentation — a collaboration between NJCTS, the Yale School of Medicine and Yale Continuing Medical Education — will be NJCTS Education Outreach Coordinator Melissa Fowler, MA, MEd; Stuart Green, DMH, LCSW, the associate director of the Family Medicine Training Program at Overlook Medical Center in Summit, N.J.; and three NJCTS peer advocates: 18-year-old Grace Hawruk, 14-year-old Tess Kowalski and 14-year-old Tommy Licato, each of whom has presented multiple PCME grand rounds over the past several years.

Patient-Centered Medical Education is a unique education program for pediatric and family medicine physicians and residents that provides an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety.

The PCME grand rounds format features a discussion led by adolescents/young adults with TS and their families that is augmented by an experienced medical clinician. The learning objectives include identifying and differentiating between the signs and symptoms of patients with varying tic disorder; describing and identifying the most common associated conditions in individuals with TS; giving the latest advances and comprehensive approaches for treatment for individuals with tic disorder; and presenting a patient-centered perspective of life with TS.

The PCME program has been presented at more than a dozen New Jersey hospitals over the past several years and has drawn a wide array of praise, including the following testimonials from Saint Peter’s University Hospital in New Brunswick, N.J.; Newark Beth Israel Medical Center in Newark, N.J.; and Goryeb Children’s Hospital in Morristown, N.J.:

“The attendees gained valuable insight into Tourette Syndrome and came away with a dramatically expanded perspective on the difficulties patients and their families face. I would strongly recommend that you consider scheduling this type of grand rounds at your institution.” — Saint Peter’s

“It was great to learn about the day-to-day life experiences directly from the patient. Both Tommy and Sarah were bright, honest, articulate and courageous young adults. No one left the session unaffected.” — Newark Beth Israel

“Their ability to relate personal struggles and how physicians can improve their skills was well appreciated. It was refreshing to see two young men maintain a sense of humor with what is clearly a life-altering condition.” — Goryeb

More information about Tourette Syndrome, Patient-Centered Medical Education or the New Jersey Center for Tourette Syndrome & Associated Disorders is available by calling 908-575-7350 or by visiting

It’s Disabilities Awareness Week on campus!

This week I found out about a new student group on my campus. It’s called Wash U Disability Awareness Campaign, or WUDAC for short. For some reason, I didn’t know about it until now, but now that I know about it I am excited about joining!

This week is WUDAC week on campus, and as a part of the week they have a large painted square in the underpass (the area that student groups use to advertise and which every sophomore and freshman walks under to go to class) that says “What does disability mean to you?” and provides sharpies for people to write on. That was a huge success as many people shared their thoughts on it!

Also, they are doing a photo campaign which I participated in yesterday! Every day of the week this week they are at a table in the main eating area on campus encouraging students to write a statement about disability on a board and have their picture taken, which will later be put up on Facebook.

This is my picture for the photo campaign that they took yesterday!

It’s already up on Facebook, and when I shared it on my personal Facebook page, people seemed to really like it. A bunch of the girls from my sorority liked it, and these are the girls that I always worry would judge me about my Tourette’s — even though I know they are really just as amazing and accepting as everyone else on campus.

People from Camp Twitch and Shout liked it, too, as well as my friends from high school, elementary school and college. In total, it got about 40 likes! I think that’s a new record for anything I have posted on my personal Facebook page before!

Happy October!

Hello everyone. HAPPY OCTOBER!!! Another year going by very fast for me as usual. I’m very excited about Halloween … and I am a huge fan of The Walking Dead, so I’m ultra-excited about that, LOL!

I also have been sick for the past 2 1/2 weeks. My moms just got very sick. While I have a cold, they got something (I don’t know what) that made them throw up. It was very bad. They are recovering at the moment. They still have to go to work, which is an extremely difficult thing to do. I honestly don’t know how they do it. I hope they get better soon.

So, what are you guys excited for this month? Hope you all are having a nice and cool day.