2015 NJCTS Youth Scholarship Award Essay “Tourette Syndrome: An Artist’s Journey”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

Shtick is the Yiddish word for ‘weird habit.’ I am a young woman who has multiple ‘shticks’. For the most part, it doesn’t bother me as I have always blinked my eyes, jutted my chin, jerked a leg or twitched my nose. These shticks first appeared when I was three years old and each would come and go like old friends dropping by to say hello and then moving onward after a brief visit. My friends noticed but didn’t care (they knew to sit to my right during lunch or else be kicked by a leg with ‘a mind of its own’) and I did well in school and life went on.

EmilyB

EmilyB

In my freshman year of high school things changed. My once relatively innocuous shticks were seizing greater control of my body and mind. Rather than dissipate, they lingered longer and longer. I started to tap a finger. It was just one finger and a tap here and there but like an avalanche, the taps started multiplying faster and faster until the action monopolized my thoughts. Tap. Tap. Tap. I became distracted in school and at home.

Tap. Tap. Tap. My finger bruised and calloused. Tap. Tap. Tap. It hurt. Tap. Tap. Tap. I couldn’t stop.

A visit to the doctor diagnosed Tourette Syndrome with accompanying Obsessive Compulsive Disorder (OCD). What I hadn’t realized until that moment was that I was riddled with OCD behaviors which were slowly strangling my thoughts and dictating my daily routine. I had to fight back. The neurologist armed me with klonopin, a narcotic which in her words ‘had street value’ and ‘should be hidden away’. With the endorsement of my parents, I tore the prescription up as soon as I left the office. I was determined to combat

this diagnosis on my terms with a lucid mind. I googled “Tourette Syndrome’ and my journey began.

I’ve always had a passion for painting, sketching, and expressing my emotions through the visual arts. Art serves as both an escape and catharsis. When I paint, my mind is completely focused on line, texture, shadow and form. I am drawn into a world of my making as I interpret the world around me. I am temporarily free from the hindering effects of Tourette Syndrome and OCD but like an electric charge that needs to be released, the urge is never completely dormant. My canvases reflect this struggle. I employ chiaroscuro or the use of strong contrast between light and dark. My surfaces are never still as the eye follows the ever changing pattern. There is an energy that simmers beneath the surface of my compositions. Form is never completely encapsulated by line. It seeks to break free.

A google search of Tourette Syndrome led my parents and me to the New Jersey Center for Tourette Syndrome (NJCTS) located not far from our home in central New Jersey. The center offered a wealth of educational material and guidance. We learned the official definition; “Tourette Syndrome is an inherited, neurological disorder characterized by repeated involuntary movements and uncontrollable vocal (phonic) sounds called tics”. I like shtick better.

From the information we received at NJCTS, I was led to the office of a wonderful behavioral psychologist who I have been working with for the past three years. Ridding the shackles of OCD is not easy. It is difficult work. The process is slow. There are often tears. Yet, it is also empowering. I now understand how my body and mind react to Tourette Syndrome. I am able to quell OCD tendencies before the behaviour grows

suffocating tentacles. I am in control.

I painted recently a canvas of a young woman holding a pair of scissors. The cool steely blades frame her eye and are poised to snap shut on her eyelashes. Her compulsion is not to cut her long black hair which frames her face but to hack off lashes which normally would fall out quietly. The image is unsettling. I wanted the viewer to experience anxiety triggered by OCD. However, upon closer inspection, the viewer realizes that the hand holding the scissors as well as the scissor’s handle are non-existent. The long silver blades trail to the edge of the canvas and then disappear. They are literally ‘cut off from the mechanism which can cause the blades to open and close. She is safe.

I will always be an artist. I will always have Tourette Syndrome. While I will continue to strive to understand how each influence the other, I am empowered to shape the direction of my journey. Looking back over several years of struggle, I found that art was my way to break free. This fall, I will be attending the prestigious Rhode Island School of Design in Providence, Rhode Island. I am excited to immerse myself in everything which RISD offers and look forward to a career and life filled with creative possibilities!

A mentorship relationship has changed my life

I know I haven’t blogged in a while, but there has been a lot happening in my life and things have been pretty great. I want to update you all about something that has given me a lot of inspiration and hope about my future (and write this for myself to chronicle my college journey).

I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into. I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed).

I KNOW that my tics don’t effect my ability to be a student, to write, do research or succeed and move forward with my goal of getting a PhD in a very research-oriented area in ANY way. But that thought of “what if she doesn’t understand” was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!

Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/mentorship however, has blown me away.

Putting things in perspective for my readers a little: My professor (who I will call Dr. Brown) is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers and is as I have said a prominent and well-known researcher in her field. In other words, she’s awesome and anyone who is anyone in this field knows how she is.

In the beginning of the semester I went to meet with her to tell her about my Tourette’s/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn’t seem concerned at all.

Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken.

I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.

I stopped focusing on my tics in class, and more and more they weren’t even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.

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How CBIT has helped me and my tics

OK, so I promised I would write more about my experience with CBIT. CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don’t get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe.

One thing that’s helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn’t. We’ve had to make a lot of adjustments to the original CBIT protocols because paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT).

So we have had to get rid of that part competently,and also rearrange a lot of other things as well. With a lot of tweaking, though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication I’ve been on and the best part is NO SIDE EFFECTS!

So today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my junior or senior year of high school (about 3 years ago). What I’m going to do is I’m going to paste that list here and I’m going to cross out all the tics that I no longer have.

Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let’s see how many tics I’ve gotten rid of!

  • Eye rolling to upper right corners
  • Fast blinking
  • Hard blinking/squinting
  • Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
  • Grimace with mouth combined with eye blink
  • Pursing lips silently
  • Pursing lips to make a slight and quiet kissing sound
  • Lifting upper lip
  • Pouting lip
  • Slight raising of lips into fast smile
  • Sticking tongue out
  • Chomping teeth
  • Opening mouth really wide (looks like a silent scream)
  • Twisting lips to the left or right side of face
  • Entire face squint (just-tasted-something-really-sour face)
  • Slight neck bend to left or right side
  • Neck turning which results in neck cracking
  • Violent head/neck jerking forward
  • Shaking head fast from side to side
  • Bending head backward

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Happy Valentine’s Day!

Happy Valentine’s Day everyone! What are you doing to celebrate? I’ll be spending Valentine’s Day with my amazing boyfriend who accepts me, tics and all. Although I haven’t been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn’t change his opinion about me.

Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said, “Of course they like you! You’re so laid back and sweet. You’re the kind of person who a child would naturally feel comfortable with and open up to”. I so appreciated his compliment! It made me feel great and so special. 🙂

I SAID YES!

Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes! 🙂

So now I can say that we’re officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist.

We always have something to talk about and it’s always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.

Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really OK with it and didn’t seem to think much of it at all. It didn’t seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more.

This gives me more confidence that if I told him about my tics, it wouldn’t affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it’s just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won’t reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.

I’m not sure when exactly i’m going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I’ll keep you guys updated on what I decide to do! Please wish me luck! 🙂

OCD IS REAL!!!

It hurts so much to be told by the ones who you love the most that your OCD isn’t real and you should just “get over it”. It hurts so much when I try to explain that OCD is just as real as any other disorder and when my mom tells me that that’s complete BS. She screams at me that it’s my fault and makes me feel so much shame over something I wouldn’t wish on my worst enemy.

This isn’t the first time this has happened, and I’m sure it won’t be the last, but it hurts just as much every time. Mental illness is real. I live with it every day and I know all too well how real it is.

Thank you to everyone who offered me encouragement on my page

Thank you so much to those of you who commented on my post from the other day by coming over to my Facebook page and offering encouragement! Everyone who commented brought light to my day and encouraged me so much. I am so glad to hear that I have helped so many people though my page.

One of my absolute favorite things to hear is that a parent is sharing my posts with their child who has TS. Some of you commented to say that your child looks forward to my posts and that my posts encourage them and make them feel less alone. I cannot express how good this makes me feel and how much I love making a difference in your children’s lives.

I also love hearing how your kids are doing and about how my site is helping them, so please comment on my posts to let me know how things are going or send me a message and it will probably make my day!

Also thank you to those of you who are adults with TS who commented letting me know my posts have helped you! I love to hear that my stories and posts about my “adventures” as a college student living with TS are helpful and inspiring to you.

Today is a much better day. Even though my ticcing is still pretty bad, my body seems to be less sore and seems to have gotten used to the increased ticcing. Also my OCD thoughts are better and I’m moving though my day with a better attitude. I know that all of your comments have contributed to the fact that today has been a lot better .

Need some encouragement today please

I need some positivity and encouragement today, so if you could, I would really appreciate any comment on this post to let me know how this page has helped you or how I have helped you and your family.

I have one week left of classes, reading week and finals, which leads to a lot of stress, but on top of all that I have extra anxiety going on because of something I found out about a family member over Thanksgiving break. I can’t go into much detail about that situation, but it is pretty devastating and life-changing for this person and the rest of our family to say the least.

Yesterday and today my muscles have been extremely sore from ticcing (mainly muscle tics in bed, and even when half asleep). Every time I sneeze, cough or do any type of vocal tic, I am in pain because of the pressure and aggravation the ticcing puts on my already very sore muscles. I was sore and exhausted all day.

My best guess was that I was ticcing through most of the night and didn’t get a lot of deep sleep, hence the sore muscles and exhaustion. A few times I woke myself up from ticcing last night and the night before. My tic where I hit myself in the chest has come back as well, and that’s a rough one.

What is happening is affecting me because not only is this person a member of my family, but my OCD/anxiety is acting up about the situation as well. It’s making my OCD thoughts worse and is making my compulsions worse as well.

Even though it’s very upsetting, one positive is that it’s made me even more grateful for the life I have. It has put a lot of things into perspective and even though my tics are bad right now, I am grateful for my life, all the opportunities I have been given, and for my ability to take full advantage of these opportunities and work hard to finish my college education, apply to grad school (next year), and hopefully use this education I have been given to make a difference in the lives of others through research and clinical work in my future.

I am also grateful that I am able to make a difference in the lives of others now. I love volunteering at my local Children’s Hospital, forging long-term connections with the patients, volunteering at Camp Twitch and Shout, and making a difference in the lives of all of you through this page.

So if you could, please comment about how my Facebook page has helped you and anything else you can think of that you would like to see on the page to help further.

An awkward public encounter

This week is a strange one. I’ve never had a stranger out in public comment about my Tourette’s in my life and then suddenly it happens twice in one week. Craziness. I was getting food and did a facial tic and the server asked me “What was that?” I hadn’t even realized I did a facial tic so I said, “Sorry, what?”

He then said, “That thing you did with your face.” So I told him I had a medical condition. He responded with “Oh, I thought you were upset with me”. I assured him that I wasn’t upset with him and I had tics which were involuntary. I guess he felt kind of awkward and didn’t know what to say next so he said, “Do you cuss people out? Like in me, you, and Irene?” I told him no.

I later looked up the movie and found out it’s not even about Tourette’s. It’s about multiple personality disorder … lol, I just laughed. Definitely an interesting encounter.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

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