2015 NJCTS Youth Scholarship Award Essay: “Living with Tourette’s”

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!

Tourette’s hasn’t played a small part in my life, it’s played in a majority of it. I like to think that I have it under control and that it doesn’t control me, but it still dictates most of my daily life. I don’t do these things because I want to, but because I feel the need to. I have to.

People sometimes give me funny looks and ask if I’m alright. I’ll just nod because if I told them I’m not alright and that I feel bothered all the time, they wouldn’t understand. Because they can’t understand what I am going through is the reason why I try to hide it. Suppress it.

I also have OCD so during school, most of my time is either spent doing tics or checking things, or, trying to stop these things from happening. I get so caught up in my image that I forget to actually live my life sometimes. Medication and therapy has helped me come a long way, but there is only so far someone can walk away from their true self. This is who I am, and no amount of medication or therapy can change that.

People will sometimes ask me I if took my medication that day. I take it at night anyway but the point is that I can’t change who I am, I’m stuck like this. If I could have changed, trust me, I would have right when I heard that diagnosis.

The physical effects are hard enough to bear but couple that with the mental hardship of knowing almost no one understands and that you can’t fix your problem. It eats away at you. The social stigma associated with mental disorders doesn’t do me any justice either. People stereotype me for something I can’t change, much like an ethnicity or nationality. No one wants to take into account that everyone is different, and that you don’t have to judge everyone all the time. Everyone just wants to make themselves feel superior and target people like me in the process. The result of being a potential target of ridicule has led me to better understand and accept others better. I may still laugh at how someone dresses or holds themselves, but I will never laugh at things that they can’t change, I just won’t. I’ve been through what they have and have realized,they don’t need any more hardship in their lives, especially for something that can’t go away.

Tourette’s might have brought me suffering, but it’s also brought me the ability to feel empathy towards those suffering around me. It has molded me to be the person that I am today and in conjunction with a recent death in the family, has guided me to select medicine as a career so I will be a pre-med major in college.

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!

New Jersey students get lessons about Tourette from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

“Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all,” NJCTS Education Outreach Coordinator Gina Jones said. “He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion.” Continue reading

Tourette Syndrome is so much more than tics

Sorry there hasn’t been any posts in a while. All of us are busy with exams at the moment.

I would like to share with you my speech I did for my GCSE English Speaking exam about Tourette Syndrome so here it is:

Tourette Syndrome is a neurological condition which is categorised by “tics”. Tics are rapid and recurrent uncontrollable movements and noises. People who suffer from Tourettes are usually diagnosed at around 6-9 years old. Although, people may be diagnosed earlier or later than this. I, personally, was diagnosed with Tourette Syndrome 9 years ago, when I was 7 years old.

I have always been treated differently due to being adopted and, therefore, having older parents. I was always known as “the weird one”. People can be very mean when you’re different. I have always had Tourettes since I was little. I would often do something without realising and then get told off because of it.

I still do occasionally get told off for my tics, but then the person remembers that I have Tourettes and that I can’t help it. Even my parents do this sometimes. I may be tapping on something and they’ll tell me to stop only for me to remind them that I can’t help it. I feel like this only happens due to peoples perception of what a tic should look or sound like, but the thing is that there is no structure to a tic. They can be anything at all. My tapping tic is where I have to tap an object using a certain pattern which I have to repeat in sets of four until it feels right and if I mess it up, I must start the pattern all over again.

I can understand how my parents sometimes do not realise this is a tic, because it isn’t just a tic. It is also due to OCD. The counting part is OCD, and the part where I have to do it again and again if I mess up is also to do with OCD. It isn’t as though I think something bad will happen if I don’t do it, it is that my OCD makes me feel as though something might happen if I don’t complete it.

Due to Tourettes I also have other, related, disorders. OCD is the one I just mentioned.

I also have ADHD which causes me to get distracted very easily, causing me to often get told off in class for not concentrating, and I often miss things the teacher says due to getting distracted by others or writing down notes – I find it hard to concentrate on writing and listening at the same time.

There is also Sensory Processing Disorder. This means that I do not process sensory input in the same way as others do. There are certain noises I do not like and the only way to explain how they affect me in a way you’ll understand is that they hurt me, that is why I have my ear defenders. They protect me from these noises and I can also use them when I need to write and there is too much noise.

Due to this, at dinner time, I tend to sit in a different room to eat or listen to music while I eat so I don’t hear the sound of cutlery scraping on plates. My parents try not to do this, but it is hard to eat without touching your plate with the knife or fork so everyday, except Sunday, I sit in a separate room to eat. Hearing these certain noises that I am sensitive to makes it extremely hard to concentrate as all I end up thinking about is how I want the noise to stop, or that I want to get away from the sound.

All of this is just due to having Tourette Syndrome. People always assume that they know everything about Tourettes but it is so much more and can affect those with it in many different ways. I need people to know that there aren’t only tics that I have to deal with, but there are also OCD rituals as well as concentration and sensory issues too.

Tourette Syndrome is so much more than just tics. I want others to see that. Thank you.

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading