2016 NJCTS Youth Scholarship Award Essay: “Living with Tourettes”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

EricR

EricR

I was diagnosed with Tourette’s Syndrome at the age often. My tics were much worse when I was younger, but have started to dissipate as I have grown. The diagnosis of Tourette’s is central to my identity and matters a great deal, as it has shaped who I am and how I interact with the world.

Having Tourette’s does not define me, however, it was a pivotal player in the shaping of my early years. I started showing symptoms around the age of six. The first observable tics included humming and blinking. My family had no idea what was happening, so they took me to see multiple doctors. At first the doctors said that I had transient tics. They could not make the diagnosis of Tourette’s until I displayed both motor and vocal tics consistently for over a year. This was a problem because my tics would change constantly. I could have one or a combination of multiple tics occur simultaneously and then they would suddenly disappear for months at a time. This occurred for a number of years. Therefore, it wasn’t until the age often, that a doctor officially made the diagnosis.

Tourette’s has come to shape my personal identity in different ways over the years. I have had to learn how to deal with it every day of my life, since elementary school. When I was younger, my tics were at their worst, so I had to focus more on controlling them than on the lessons being taught at school. As a result, my parents often had to re-teach the lessons to me, and at times I also needed tutoring. Once I became a teenager my vocal tics were the most noticeable and disruptive. Fortunately, my teachers and classmates were compassionate and understanding. They knew that I had Tourette’s and that I wasn’t making strange noises on purpose. It was during this time that various medications were attempted, but they only made my tics worse and gave me bad side effects. Despite the downside of distracting me from my early education, many positive things have come out of my condition.

Having Tourette’s Syndrome has allowed me to understand myself on a deeper level. I have become more confident as I grow and adapt to my disorder. Because of the confidence I have acquired, I am a more focused and dedicated student.

As a result of this dedication, I have been on the honor roll every year since entering middle school. I also hold memberships in both the St. Thomas Aquinas Honor Society and the National Honor Society of High School Scholars. During my sophomore and junior years, I received several Outstanding Academic Achievement Awards. In addition, I have been recognized as a member of the Sapientia Sanctitas Society.

My success did not come easy. Many hours of studying and tutoring occurred throughout my elementary and high school years. I knew that if I wanted to succeed, I would need to focus and concentrate on doing well. My determination and perseverance paid off, as I have been accepted into three colleges to study architecture.

Experiencing challenges at an early age caused me to have a unique and positive perspective of the world. I see the world in a different way. I am not quick to judge other people, as I understand what it feels like to be looked at oddly. When I was younger, I used to be very introverted. Now that I am older and my tics are more manageable, I have become more extroverted. I am no longer afraid of what others will think of me and I now welcome new challenges.

Tourette’s has helped shape my personal identity as it has exposed me to diverse and challenging situations. I have become less introverted and have formed a positive opinion of the world around me because of the confidence I have gained from adapting to my disability. I look forward to experiencing new challenges and more opportunities for growth, as I continue my education as an architecture student.

2016 NJCTS Youth Scholarship Award Essay: “A Journey with Tourette Syndrome”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

JordanT

JordanT

Tourette Syndrome has played a significant role in my life ever since I was diagnosed in fifth grade. Initially, it did not pose much of a threat for me. I was still able to focus during school, which allowed me to continue my education and learning. I was grateful for that phenomenon, but it did not come without a caveat. Even though my facial tics were not very severe, I still developed a shyness and self-consciousness because of them. However, I was surrounded by a group of kind and accepting friends, which greatly alleviated my anxiety.

I was able to prosper throughout middle school with the support of my friends and family, but high school was a much different story. I am currently attending the Academy for Information Technology, a prestigious school dedicated to teaching students about the vast possibilities of business, information technology, and computer science. Unfortunately, I was the only student from my middle school who enrolled that year, so I was in a completely new environment. I was terrified at first, but I was able to overcome my fears and make new friends, just as friendly as the ones I had in middle school. The course work was much tougher than in middle school, but I was able to succeed in my academic endeavors. My facial tics were under control as well, so all was well in life.

My senior year of high school was a major turning point for me and my Tourette Syndrome. At the start of the year, I felt an immense weight on my shoulders because of all the new responsibilities I had to assume. With more demanding school work, the college application process, and my extracurricular activities, I felt swarmed with an enormous amount of pressure. And with the additional stress, the frequency of my facial tics skyrocketed. The first few weeks were probably the worst. During class and at home, I could barely keep my eyes open. Not because of a lack of sleep, but from incessant blinking, one of my most prominent facial tics. The warm summer weather only aggravated my symptoms. My self-consciousness also reemerged, as I was afraid people might start noticing my facial tics. I felt like I was hopeless, but I resolved to overcome this obstacle.

Senior year marked a new precedent for my Tourette Syndrome, but I gained a valuable trait from my facial tics as well. My tics were starting to impede my focus, so I knew I had to something or else my learning would suffer. One day after school, I went into deep contemplation and emerged with a strategy for alleviating my troubles. I realized my Tourette Syndrome was a medical condition, so I would not be able to just make it go away. Instead of trying to arduously suppress my facial tics, I decided to embrace my tics as a definitive part of me. Whenever I felt a sudden wave of facial tics about to occur, I would just let it wash over me and run its course. With this method of coping, I was able to maintain my focus and composure while doing my school work. It took some practice, but after a few weeks, I was back on track for success. My facial tics now seemed like involuntary actions, just like breathing or walking. With my new training, I acquired the virtue of patience, which has paid off time and again in school and life. I was confident in myself once again with inspired passion that I could overcome such an obstacle. Instead of seeing Tourette Syndrome as an adversary, I can now see it as a motivator to help me continually improve myself throughout life.

NJCTS Youth Advocate Tess Kowalski delivers keynote address at Dare to Dream Conference

Dare to dream

NJCTS Youth Advocate Tess Kowalski delivered a moving keynote address at the 2016 Dare to Dream Student Leadership Conference at Mercer County Community College on April 29.

The New Jersey Department of Education, Office of Special Education Programs sponsors regional Dare to Dream Student Leadership conferences that highlight strategies and information to prepare high school students with disabilities for college and career readiness. Each conference features keynote presentations from accomplished students and young adults with disabilities who have demonstrated exemplary self-advocacy and leadership skills.

As teens and young adults living with Tourette Syndrome—a misunderstood, misdiagnosed neurological disorder characterized by involuntary sounds and movements known as tics—NJCTS Youth Advocates are uniquely positioned to speak to and inspire others who are overcoming obstacles. Advocates are trained to educate others about Tourette Syndrome promoting acceptance, tolerance, self-advocacy, and leadership.

“Tess did an outstanding job at the Mercer conference,” said Bob Haugh, Project Coordinator for Dare to Dream. And we couldn’t agree more!

NJCTS Youth Advocate Tess Kowalski delivers keynote address at the Dare to Dream conference at Mercer County Community College.

NJCTS Youth Advocate Tess Kowalski delivers keynote address at the Dare to Dream conference at Mercer County Community College.

It Has Been A While

Hello there!

I had been a blogger on here a while ago. Sadly, time had gotten away from me because of college and my studies, but I have more time on my hands so I wanted to get back into this!

I believe when I had started blogging I was either a senior in high school or a freshman in college. A lot has changed since then. I am currently a super senior in college. I have one final class this semester before graduating in December. College has been a lot of fun, and I truly feel that throughout this experience I have found myself. I know what I want to strive for to better myself and continue on my path of becoming the best me possible, and I believe I have matured into a woman who is a lot different then who I used to be (which I am very happy about). In high school I was very insecure. I looked to my peers on how to act, what was cool, and who I thought I wanted to be. I wanted to fit in, and honestly, who doesn’t? But high school was hard, I was only 18 when I graduated. Now being 22, almost 23, I realize how much I didn’t know about myself. I used to define myself only as the girl who has Tourette Syndrome. That was honestly all I thought people saw me for, but I was wrong. After some therapy and work, I was able to see that my TS was not who I was, it was only a small portion. I am a lovely, smart, funny, and charismatic woman who loves learning and being silly! Those are just a few words that I would sue to describe me. Now, I do not see my tourettes as a burden, but something that has made me stronger, something that I wouldn’t want to change. Instead of being ashamed of my tics, I have grown to continually learn more about them and myself and laugh with it. When I have a really excited tic, or when I’m really happy I usually tic and then giggle and smile. My friends know how I’m feeling without me having to tell them because of it. They know my happy tics from my mad tics, and my concentrating tics from my everyday tics. It has made me me, and now when people describe me and they say you know, the blonde girl who has tourettes? I’m not ashamed or mad, I’m happy about it. It makes me stick out, in my opinion, in a good way.

Granted, having TS can still be challenging. I still get some mean glares, or people making fun of it behind me back, but they don’t matter to me. If they knew me as a person and if they can’t put two and two together realizing that if I’m continuously twitching I’m not doing it on purpose, then I don’t care about them. They’re not important enough for me to spend time on. I’ll get this in passing sometimes, but it’s okay. I try to advocate as much as possible, but sometimes you can’t get to everyone. And honestly, I love advocating about it. I love when people come up to me and ask if I’m okay, even if it’s in passing. It makes me so happy because it shows me they’re concerned and care. I love educating and allowing someone to see if firsthand, so maybe the next time they see someone who has similar signs they’ll know and possibly be able to help or make the connection that this person has TS. Even if they can’t remember the name, they’ll think, oh hey wait I was that girl who had something similar to this, this person is okay.

I am happy there is more awareness and recognition for TS. I remember in 3rd grade when I was advocating for it in class, no one knew about it. In those years, times truly have changed. Almost always now whenever I tell someone I have tourettes and ask if they know what it is, they say yes. I still sometimes get ones who don’t know, but I love telling them and helping them understand its involuntary, just like a sneeze. I feel like educating others on it is so important, just like any other disability, or as I would prefer to call it, a little something extra.

Anyways, this post is already way too long. But it feels good to be back. I will be writing again soon, and I hope that if you guys ever have any comments, need help, or even advice, you’d leave a note. I love helping others, especially on this subject.

I hope you all have a wonderful day and I’ll talk to you soon!

Katie

Young Millburn actor with Tourette’s Syndrome prepares for college

Alec Wolf finds freedom when he is on stage and he doesn’t let his TS hold him back. We are delighted to have Alec chosen as a finalist of our Youth Scholarship Award and we look forward to seeing his continued success, in school and on stage!

PHOTO COURTESY OF CINDI WOLF Alec Wolf, as Dr. Fredrick Frankenstein, sings on his peers' shoulders in MHS Limelight Players' production of "Young Frankenstein," in November 2014.

PHOTO COURTESY OF CINDI WOLF
Alec Wolf, as Dr. Fredrick Frankenstein, sings on his peers’ shoulders in MHS Limelight Players’ production of “Young Frankenstein,” in November 2014.

Alec was recently profiled in The Item of Millburn and Short Hills:

The only time Alec Wolf says he feels free from Tourette’s Syndrome is when he’s on stage.

Wolf, 18, clears his throat and jerks his body uncontrollably several times a day, but he says the tics are part and parcel of the character he plays every day in real life: Alec Wolf.

In the theater, however, they’re nowhere to be found.

“I can have a million personalities when I’m acting, and it’s not the one with Tourette’s,” said Wolf, who graduated from Millburn High School last month. He was awarded the New Jersey Center for Tourette’s Syndrome and Associated Disorders (NJCTS) 2015 Youth Scholarship after submitting his essay, “The Things that Make Me Tic (Pun Intended).”

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In case you missed his essay, you can read it here.

 

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!

The final push

I have approximately a month of university left. A very, very scary prospect.

Before I forget – last semester I wrote a dissertation about the impact Tourette syndrome can have on educational attainment, which was interesting to research and write! I will share the results from this and the possible implications these can have soon, but I simply don’t have the time to write about it right now!

This semester is all about drama. I am directing a short play based on the book The Man Who Mistook His Wife for a Hat by Oliver Sacks which has been a really enjoyable experience (although it is testing my organisational skills!).

I am also going to be playing Dorothy in our university production of The Wizard of Oz. This is literally a dream come true for me. I never thought I would truly be able to tread the boards in a blue gingham dress with ruby slippers…but that’s what I will be doing in under three weeks time!

I feel lucky to be playing this role now, but a few years ago I would have thought it would be completely impossible for me to. But TS has not been a barrier to me achieving my goals and reaching my dreams! I have said things along these lines so many times before, and although I always tank I truly mean it, there is always a voice in my head to say the contrary. However, that little voice is now fading, and hopefully soon it will be gone for good!

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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Tics & Fitness

Hi! My name is Megan and I’m 23-year-old student with Tourette’s Syndrome. Tourettes is a neurological condition where one has vocal outbursts and/or physical spasms. I firmly believe that eating healthy and exercising helps reduce Tourettes. If exercise can help with Tourette’s it can help with ANYTHiNG. Exercise is your best medicine. Visit my Facebook page!

Tourette’s is a battle I deal with every day. I bite my lip and tongue until it chaps and bleeds, I wear a mouthguard to protect it but have tics where I spit out the mouthguard and it falls to the ground. Embarrassed and disgusted, I put it back in my mouth. Desperate time comes for desperate measures, so without a sink nearby I have to put it back in my mouth or wait.

I jerk my neck back repeatedly until I feel a certain pain. Not until I feel the pain I will never be satisfied. Once satisfied, the tic happens again — an ongoing cycle. I can’t write. Although I have beautiful hand writing, the beauty is useless because I either cramp my hands or throw my pencil at someone’s face.

There are so many more tics I experience that makes everyday a battle. But I am thankful. Thankful for the people who do love and understand me. Thankful for my family, friends, fiance, acquaintances, and kind strangers who give me a smile. I continue to strive in school. I continue to exercise and practice to be a personal trainer.

I still have the ability to save up money to attend the University of Washington to major in International Studies because I want to help the world. I am thankful. And all I ever want is to pay it forward.