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.

Teens tackle Tourette’s with fundraising walk

NJCTS Youth Advocate Mike Hayden inspired his high school English class to organize, promote, and host a TS awareness event with “Teens Tackle Tourette’s.” They recently held their main event by hosting an awareness walk on their HS campus. Over the past few months, NJCTS and Mike have educated his class about Tourette Syndrome and answered questions about the misunderstood disorder. The T3 students are a passionate group and we are so proud of all they have accomplished. Check back soon for more pictures and details.

A group of students enjoy the Teens Tackle Tourette's (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

A group of students enjoy the Teens Tackle Tourette’s (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

Read the story in Pascack Valley Community Life.

Watch NJCTS Youth Advocate Tess Kowalski’s interview on ABC’ NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! If you missed the segment that aired on Sunday you can watch it here. Bravo!

Skier races toward Tourette Syndrome Awareness

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler of Oak Ridge, NJ, is making a name for herself not only as one of the top skiers in the tri-state area but also as an advocate for Tourette Syndrome.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Kyla was diagnosed with Tourette Syndrome in third grade but she never let it hold her back. This past March, Kyla represented the state of New Jersey in Gilford, New Hampshire at the Pice Invitational Ski Race for the second year in a row. She was invited to participate in this race after placing in the top 10 in her age group and third in New Jersey this year.

Now, this sixth grader strives to raise awareness of this misunderstood, misdiagnosed disorder and she is starting in her own backyard. On May 18, 2016, Kyla met with Mayor Russell Felter and asked him to recognize June 4th as Tourette Syndrome Awareness Day in Jefferson Township.

Kyla encourages everyone to learn more about Tourette Syndrome to combat the stigma these children face. Her efforts represent the spirit of The GreaTS movement which recently was launched by the NJ Center for Tourette Syndrome and Associated Disorders, Inc (NJCTS) and soccer star Tim Howard. The GreaTS is a worldwide movement which aims to help individuals with TS and associated mental health disorders develop the confidence, leadership, and self-advocacy skills necessary to overcome their challenges and find their own paths to personal greatness.

“We applaud Kyla’s good work and she is part of a statewide effort to have June 4th recognized as Tourette Syndrome Awareness Day in every corner of New Jersey,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making biases a thing of the past. Kyla is truly One of The GreaTS!”

The Butler Family proudly displays their Mayor's proclamation

The Butler Family proudly displays their Mayor’s proclamation

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

NJCTS Youth Advocate featured on ABC’s “Protect Our Children” special

PROTECT_OUR_CHILDREN_Date Time WABCOn April 16th, ABC aired the, “PROTECT OUR CHILDREN: COPING, STRESS, & MOVING FORWARD” special hosted by Eyewitness News Anchor, Diana Williams. This special describes what experts are referring to as an epidemic of stress-related problems plaguing our children. It’s not easy being a kid these days and the American Psychological Association says one in three teens is stressed. Doctors report they are treating kids as young as six for Migraines and Ulcers. NJCTS Youth Advocate Tom Licato of South Plainfield, NJ, was featured in the program along with other young people dealing with physical, mental, and economic stress-related problems.

“Meeting a 17 year old High School Junior on a mission to educate others about Tourette Syndrome, he’s clearly a leader and a powerful advocate,” said the special’s producer, Jeelu Billimoria. “Finally being diagnosed in 6th grade was a relief for him and he continues to be treated at Overlook Medical Center’s Neuroscience Institute.”

Click here to watch one of NJCTS’s finest advocates on ABC.

 

Award-winning Dawson Coyle to perform at Sunday’s NJ Walks for TS at Medford Lakes

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

The first South Jersey 5K for Tourette Syndrome is coming to Medford Lakes this Sunday and Dawson Coyle can’t wait.

The Gloucester County native is making a name for himself throughout the region as an award-winning singer/songwriter and will bring his sound to NJ Walks for TS.  He says encouraging audiences with his music is a big part of what he does, but this event holds an even deeper meaning for the 16-year-old.

Dawson was diagnosed with Tourette Syndrome (TS) at the age of five. A neurological disorder, TS is characterized by involuntary movements or sounds known as tics. As many as 1 in 100 children exhibit symptoms of TS which is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues, and learning disabilities.

“Having TS and being aware of the everyday struggle of all that comes along with it makes it a very real issue for me,” he said.

NJ Walks for TS is a day of advocacy and awareness, started for kids, by kids to benefit kids with Tourette Syndrome. In addition to encouraging peers and younger kids to embrace life by connecting with something they enjoy doing, Dawson would like to help bring the public to a greater understanding of TS.

“This is not a joke,” he said, “I’ve heard the term [Tourette] negatively in describing others as a joke my whole life and it’s not funny.”

“For me, personally, when I hold back my motor tics, it’s like holding back a blink but in every part of your body—it’s exhausting,” he said. “[TS] waxes and wanes, it’s very possible to see me not ticking for extended periods of time…there is no rhyme or reason.”

For Dawson, and many of the other 20,000 school aged children and teens with TS, the outward appearance is the tip of the iceberg.

“Many times we struggle with our thoughts,” he said. “Depression, anxiety, OCD and so many other things come along with it.”

Ultimately, he wants everyone—especially those struggling with the disorder—to know that “those things do not have to overtake someone with TS.”

Dawson credits his faith, parents and music for helping him keep a positive mindset.

“I really want to be an encouragement to others with TS,” he said, “to show them that they can find something they’re good at, work hard at it and, in return, can also encourage and inspire others.”

All proceeds from NJ Walks for TS at Medford Lakes will benefit the NJ Center for Tourette Syndrome’s (NJCTS) Education Outreach Program, which delivers in-service trainings to schools and hospitals across the state, youth leadership training, and scholarships.

To register or donate, visit http://njcts.org/walk. On-site check-in begins at 8 a.m., Sunday, Sept. 20 at Beach 1/Vaughan Hall (Tabernacle Road) in Medford Lakes.

For more information on Dawson Coyle, visit http://www.dawsonmusic11.com/

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.

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.