Our differences make us who we are

While growing up in two different places, I never really stood out in the crowd. I was just normal, in a good way I suppose, and I didn’t think much of it. Although I feared new environments due to my shyness, I was soon in America by the age of three. I spent five full and fun years and went back to Korea. As I recall I was very organized, did all my work, and focused perfectly well. Those were probably the few reasons why I didn’t expect myself to be in the position that I was, and still am now. I don’t think that I will forget the three years of my Tourette Syndrome experiences.

To begin with, I had never even heard of the word Tourette’s before I started to have tics. I don’t remember when it first started. I don’t think you can have tics, the constant movements or noises I make, all of a sudden. It might have happened slowly, but it also could have been rushed through, too. One thing I clearly remember is the time my mom and dad told me we were going to the doctor’s when I was eleven years old. They weren’t very specific, but I already suspected it was because of my head-shaking and eye-rolling. “But why?” I asked. When my dad answered the question, I started to yell that I would not go. That I was not mentally ill. But I had to, and I did. After waiting for an hour and half, (it was a very good and big hospital) and within minutes I was diagnosed with Tourette Syndrome. It was too much information that I did not understand at that point.

Although this post is not going to be purposely overly depressing, the first years were probably the hardest. It was when the truth hit me hard. My condition was worse than right now. Then, I had to accept the fact that I was “different.” Every time I looked around, I saw people. People just sitting, writing, laughing, playing. All doing so while staying still. But me? Why couldn’t I do the same? My Tourette Syndrome medicines increased to a high dose, and I started receiving antidepressants. I would have to answer the embarrassing question whenever I met someone: “Why do you do that?” There were a few times when some disturbing boys just had to imitate me, and I would get very emotional at those times. I would cry. I was never the one in control when it came to my tics. I was insecure enough―and I didn’t need them to point out the facts for me. And some days it was kind of annoying and depressing, unfair and just sad. For so many reasons, really. I hated when people who I didn’t even know stared at me as if I were strange, abnormal. I didn’t like how someone would judge me before they would even get to know me. It was inevitable, though. People would see my Tourette’s before they would see me. I didn’t like it.

Whenever I would share these kind of moments to adults, my doctor, parents, I felt like they would never fully, completely understand. I would spill the words out from my heart sometimes, but some days I would seal my mouth shut. I could never share these experiences to any of my Tourette’s-inexperienced friends, not even to my closest ones. They would never really get it. Even now, I’ve never really talked to them about it other than tell them about it. I knew that everyone was always there for me. But in a way, they weren’t because they would never truly know how it feels.

I sometimes admit that I think I have had a lot to benefit from having Tourette Syndrome. For example, I see more in people than I had before. I know what it’s like to be depressed. I understand how hard it is to be so hateful toward your own self. I know how sometimes, you don’t want to get out of bed; you just want to sleep forever. I also know that I’m no different than others. Our differences make us who we are.

But if you’re thinking having Tourette’s isn’t painful, or maybe not that bad let me tell you that you won’t want to have it. People stare. Your neck will hurt, and you’ll pretend to roll your neck naturally in school—oh, I’m just stretching—afraid people will notice. Anyone can use it against you; from petty girls to “Everyone likes me so I’m a good person” type of boys. It can be genetic, but in my case none of my parents had it. I could make a list of reasons why I don’t want it. When I look back at the past, I was a very sad third-grader. I was always stressed. I was this normal, popular girl in America, and when I came to Korea, I suddenly had these stupid, severe tics. I mostly cried everyday, and screamed a lot, too. I continued to read a lot. I only enjoyed reading English books, and it was one of my few remedies. I had only a few girl friends. Most of my friends were boys. I didn’t care though, until I got to fourth grade.

It was the first day of school in fourth grade, and as soon as I walked into the classroom, I was screwed. First of all, my tics were in bad condition. Especially my vocal tics, which are the sound tics. Second, I barely knew anyone in the classroom. ‘Forget good first impressions,’ I thought to myself. Almost everyone knew each other, which was very awkward for me. When I got to my seat I waited until my teacher came and until everyone was in the classroom. I still remember this, and I almost died of embarrassment, but I kept on clearing my throat. A boy, who was the most popular boy in our class later on, suddenly called out, “Who’s making that weird sound?” At the time no one knew except for me. Later on, everyone probably figured it out. It did not stop the girls from staring or constantly asking me why I was doing it or what I was doing.

I have recently watched a video called “I Have Tourette’s but Tourette’s Doesn’t Have Me.” I saw some things I already knew, one of them was there is at least one child with Tourette’s in every school in the U.S. It was one of those facts that I had to remind myself. In the video, I saw children between the ages of six to thirteen with Tourette’s. I found myself relating to them, especially a boy named Seth and a girl named Anna. When I heard her talking about seeking true friends, I ached because I remembered how bad I longed for a true friend for years. I cried while seeing Anna pounding her stomach, seeing her cry, scream, and talk. I cried because I saw myself. I cried because I felt her pain.

Even today, I am sensitive about my Tourette’s. I think it’s because knowing that I’m no different, and feeling like it are two different things. However, I am more truthful about it now. I have told a few of my friends what I have, because I think it is wise to. My doctor, thinks that I should tell my friends, too. I don’t think I’ll have to lie about it again. I am not embarrassed anymore. I previously had one incident, caused by my Tourette’s last year. It made me feel so many emotions at once and I quickly burst into tears. I don’t want to cry for something that is not even worthy of my tears. It’s been done too many times. I know my tics aren’t going to suddenly go away. I don’t expect them to. I know it takes time. I don’t have any stress or depression. I think the stress was one of the harder stages. I will continue to find my way, and the more I do, I think the more I will accept my Tourette Syndrome.

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.

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!

South Jersey teens with Tourette Syndrome train as youth leaders

NJCTS Youth Development Coordinator Melissa Fowler, M.Ed., leads South Jersey teens in leadership training at Virtua Health and Wellness Center in Voorhees on January 31.

Teens in South Jersey are ready to reach out and help peers and health-care professionals understand the complexities of life with Tourette Syndrome (TS).

TS is a neurological disorder characterized by involuntary sounds or movements known as tics. In addition, the majority of people with TS also have an accompanying disorder like ADHD, OCD, depression or anxiety. As many as 1 in 100 Americans show symptoms of TS, but TS is often misdiagnosed and misunderstood by the medical community.  

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is working to combat stigma and improve diagnosis through its Education Outreach Program.

“People living with a neurological disorder understand the world in a very unique way,” said Faith W. Rice, NJCTS executive director, “They can describe life with TS in ways that are having a profound effect on the community, healthcare providers, peers and educators – putting a face on an often misunderstood disorder.”

On January 31, 10 local teens and their families gathered at the Virtua Health and Wellness Center in Voorhees for an NJCTS Youth Advocate training session.

“There are families in this part of the state who are struggling without the proper diagnosis and appropriate treatments,” said Rice, “The teens we work with, because of their challenges, have an understanding and compassion far beyond their years.”

The goal is to produce teen advocates who will represent NJCTS in peer in-service trainings at local schools and will present information about TS to health-care professionals. The NJCTS Patient-Centered Education Program trains Youth Advocates to attend hospital grand rounds sessions and educate resident physicians on how to identify and recognize patients with TS.

“I now feel like I have the power to help people with TS on a larger scale,” said one participant, who chose to remain anonymous. “The training helped me realize how much more I can be doing.”

“These teens are uniquely talented, poised and capable of delivering a message that is already making difference across our state,” said Rice, “Our hope is that we will contribute to more accurate diagnosis and a safer environment for kids who are living with TS and other neurological disorders.”

To learn more about Tourette Syndrome, and the programs and services of NJCTS, visit www.njcts.org or call 908-575-7350.

Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

Me, my studies and TS

We caught up with A Level student Ellen to have a chat about all things TS.

How old were you when you got diagnosed with TS and how did you feel about this?

I have had Tourette’s for as long as I can remember, but I was never properly diagnosed until I was about 14. My parents tell me that I used to blink excessively when I was little, which, at the time, they just thought was down to me watching too much television, but I now know to be a tic.

Since I am quite good at suppressing my tics in public I was less sure that what I was doing had an actual name. I was always worried about what people might think if they found out the full extent of my tics and, what with the wide array of problems you find yourself faced with in your teenage years, having people discover that I had Tourettes Syndrome was not top of my priorities list.

Getting properly diagnosed was like a weight off my shoulders. To be able to give it a name and to know that I wasn’t the only one was a relief and it made me feel so much better about myself. I could now think, “Right, OK, this is what I have, and this is how I am going to deal with it”, instead of always worrying about why I was doing what I was doing and how other people might react.

How has school been supportive and in what ways have they helped you?

I first approached my school with the fact that I have Tourettes in the winter of year 11; the year of the dreaded GCSE’s. My parents and I explained how my Tourettes manifest and how high levels of stress affect my ability to suppress my tics in public.

Since the exam period was approaching my teachers and I discussed ways in which my exams could be made as stress-free as possible. Obviously, that time of year can be stressful for anyone, but, with Tourettes thrown in for good measure, I was worried I would struggle to cope.

My school offered me with the ability to do my exams in a separate room, and I could take time out if my tics became really bad. It gave me that extra bit of reassurance to know that I would be able to release my tics as I pleased, free from the inquisitive gazes of anyone else.

What inspired you to want to talk about TS to your sixth form?

I really wanted to raise awareness of what TS actually is and how it manifests in different people. The media often twists the reality so as to make it seem more interesting and attention-grabbing for people who don’t know much about it. I wanted to talk about what having Tourettes really means for people, especially teenagers, and how difficult it can be to deal with it, but also how it changes you as a person and the way you see the world. I was also tired of hiding and, in telling other people about my Tourettes, I felt better about accepting it in myself.

Were you nervous before giving your presentation?

I think nerves are unavoidable in any situation that involves speaking to lots of people. I am a theatre lover, and do love being on the stage, but I did feel a few butterflies. A small number of my close friends have known for a long time that I have Tourettes Syndrome, so it gave me comfort to know that they would be supportive no matter what happened.

What feedback did you get from your friends, do you feel you raised awareness of TS?

One of my main worries was that people would judge me for something that doesn’t define me as a human being. I felt that I was able to show that even though there are people who have Tourettes, it doesn’t make them incapable of being and doing other things. I wanted to be remembered as more than just “that girl with Tourettes” and everyone at school proved that that would not be impossible, which I am so grateful for.

What advice or knowledge would you give to other students who have got TS?

Don’t let it rule you! There is always someone that you can talk to, whether it is a doctor, a teacher, or a family member. If you have any worries about Tourettes or how it is making you live your life, don’t bottle them up inside you. Finding a way to deal with TS is different for everyone, but once you find what suits you, it can make all the difference.

TS Success Stories: Kristin, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Kristin’s Tourette Syndrome Story

Q: What is your name & how old are you?

A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.

Q: How long have you had Tourettes?

A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.

Q: What kind of tics do you have?

A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!

Q: Do you have any associated conditions?

A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!

Q: What’s life like living with TS?

Continue reading

TS Success Stories: Seth, 29

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Seth’s Story 

Q: What is your name and how old are you?

A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome?

A: I’ve had Tourette’s since I was 7 years old.

Q: What kinds of tics do you have?

A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?

A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?

A: While working I usually don’t have an issue with my Tourette’s. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I’ve broken furniture in the past. I’ve learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It’s much safer for me as I don’t hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,

especially if it’s something you can’t control.

Q: What is the hardest thing about living with Tourette Syndrome?

A: For me it’s watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it’s the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?

Continue reading

TS Success Stories: Martyna, 15

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Martyna’s Story

Q: What is your name and how old are you?

A: My name is Martyna, I’m 15 years old, and I’m from Poland.

Q: How long have you had Tourette Syndrome?

A: I was diagnosed with Tourette’s about 2 years ago.

Q: What kinds of tics do you have?

A: When I was younger I had a lot of different tics like eye rolling but they weren’t very noticeable. When I was 13 I started to shout and I didn’t know what was happening to me. My parents were really sad and angry. Now, I’m taking a medicine that really works for me so my tics are a lot better.

Q: What is life like for you living with Tourette Syndrome?

A: Life with Tourette’s is really hard. When I first started to have tics it is very difficult, but it got easier as time went on.

Q: What’s the hardest part about having Tourette’s?

A: I think the hardest part about having Tourette’s is meeting new people. They don’t know why I’m shouting and sometimes they are scared. It’s hard going to the movies and my main problem is going to church! I can’t stop ticcing in church.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: Don’t worry, just be happy! You must live the life! Dont worry about people who don’t understand. Think positively!

Q: What do you think other people should know about Tourette Syndrome?

A: Other people should know that our tics aren’t our fault and they should accept us.

Q: What are your strengths and what do you like to do?

A: I really love reading books! My favorite genre is fantasy. I am interested in learning more of the English language and next year I’m going to be in a special English competition.

Q: What are your goals in life?

A: When I grow up I want to be a doctor and help polish people who have Tourette Syndrome. I will be a doctor with my own experience with having Tourette’s. I would like to say you more but I can’t find enough words in English.

TS Success Stories: Steff, 23

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Steff’s Tourette Syndrome Story

Q: What is your name & how old are you?

A: Steff & 23.

Q: How long have you had Tourettes?

A: I was diagnosed when I was 7.

Q: What kind of tics do you have?

A: Most facial, some arm spasm like twitches .. when I type, like now…my hands twitch alot. When there is something wrong(toothache, knee pain, headache) my tics localize to that area. I’ve had a wink that I have had since I was diagnosed. That gets interesting sometimes.

Q: Do you have any associated conditions?

A: I have OCD, am mildly BiPolar, & have anxiety.

Q:What’s life like living with TS?

A: It’s life. I take each day for what it is & hope tomorow will be good too. My tics are worse at night, or when I am stressing and my anxiety picks up, other than that, I usually get by okay.

Q: What advice can you give others that are newly diagnosed?

A: Live your life! I am a regular person, I just move around more than others. I hate people on any TS site that hate the world. Yes, its rough, but it’s amazing also.

Q: Whats the hardest thing about having TS?

A: Meeting new people or getting a new job. People are so quick to judge. Seeing other people get down on themselves because of the condition.

Q: What do you think others should know about TS?

A: I am just like you, I just move more. You cant catch it, I cant help it, get over it.

Q: What are your strengths and what do you like to do?

A: I clean, alot. I also like to exercise. Not just run, but actually exercise. I also do alot with my dogs.

Q: What are your dreams & goals in life?

A: To help others with TS. To have a lovely family, with kids. They may or may not be born with Tourettes. But we will take that journey in stride when it comes.