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.

Friends are our first line of defense

Feeling a little better about my new swearing tic thanks to my amazing friends! I was texting one of my best friends in college who is going to live in my suite this year and I told him about it. He was so amazingly supportive like always. We’re going to be in a class this year together and so he texted me back saying, “if you do it in class, i’ll give a mean glare to whoever looks at you!” He also said, “I was going to say that I would swear with you, but then I realized that would cause more problems. haha, if we aren’t in class I’ll definitely join in.

I have the best friends in the world! I was feeling so nervous about starting school with this new tic earlier today before I talked to him, but now I’m feeling so much more confident and less nervous about it. Out of all the things I can try to do to make myself feel better when i’m ticcing or nervous about ticcing, nothing helps more than when other people make me feel at ease about my tics by standing up for me when people stare, joining in with me, or joking with me/making light of my tics.

Accepting and supportive friends truly make such a huge difference in my life that I can hardly put it into words. Thank you to all those friends out there who are our first line in emotional support. You do more for us than you could ever imagine.

My annual Tourette message = a big success!

Sent my annual message to my RA (the student who is technically in charge of our floor in the dorms) letting her know about my TS. I do this every year. My tics have never caused a problem in the dorms, but I still tell my RA each year just to make sure she is aware of it on the front end.

I have no idea if there would have been problems or not if I had not told my RA each year about my TS, but I really prefer to be safe about it rather than putting myself in a difficult or uncomfortable situation (which has happened a few times when a professor/teacher/or other person i’m around hasn’t been told about my TS).

Anyway, my RA responded to my e-mail, and like all of my RA’s in the past, she sounds amazing and accepting. Here was her response:

Thank you so much for getting back to me! I had a friend in high school who also had Tourette’s, so I am familiar with it, but there are definitely more things I can learn from you! Looking forward to meeting you soon!

It always makes me so happy when someone I’m trying to educate ends up already having known someone with TS!

2014 NJCTS Children’s Scholarship Award Essay: “I Have No Regrets”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

When the word “disease” is said, overcoming is definitely not the first thing that comes to peoples’ minds. In my opinion, having Tourette’s is a battle. I have been bullied, ridiculed, and laughed at. I think a lot about the kid I could have become, that is, if I surrendered. But luckily, I didn’t.

I managed to muster the strength and courage to face my problem. In fact, I sometimes convince myself that I no longer have TS. I have accepted the fact that I will never be cured of this. So what does this mean for me? Hide behind excuses for the rest of my life? Succumb to being a nobody? Not anymore.

Ever since I entered high school, I slowly started to see the best out of every situation. I have used my tics to my advantage by channeling my energy into something positive: setting goals and achieving them. Why should I let TS get in the way of challenging myself? I found that I can use this obstacle to my advantage.

When I was in middle school, I definitely didn’t have the same optimism about having TS as I do now. Unfortunately back then, I fell into the trap of self-pity. I would always make excuses for myself. I didn’t challenge myself in school because I thought my mental abilities weren’t sufficient for mainstream classes.

My bizarre motor tics made me feel out of place and ashamed. My fear was that people would make fun of me, especially this one tic in particular (that I still have today) where I tweak my neck to the side to feel temporary relief. If I held my tics in, I felt like exploding. Often times I would tic then nonchalantly try to cover it up by using “normal” gestures, such as cracking my neck.

Once I gained the courage to move into mainstream classes in my last year of middle school, things weren’t as bad as I had anticipated.

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2014 NJCTS Children’s Scholarship Award Essay: “Born to Stand Out”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

At a young age, I was faced with a choice. Let the diagnosis I just received define me, or accept it as part of who I am and embrace life head on. I chose the latter. I was diagnosed with Tourette’s, OCD and ADHD.

When some people hear Tourette’s, they automatically think of society’s inaccurate portrayal of a disorder where people shout out obscenities or inappropriate words. They treat it as a joke, as if people who live with Tourette’s choose to do the things they do, or could stop it if they wanted to. Very few people understand what having Tourette’s is really like.

Over the years, l’ve experienced a wide range of tics. My motor tics included excessive blinking, sniffing, jerking my neck, and popping my shoulder, often making everyday life uncomfortable and awkward. l’ve had vocal tics where I would constantly clear my throat, grun! or make strange noises that would often draw confused and disapproving looks from those around me.

Living with this disorder has been far from easy, fraught with physical pain and many ups and downs. When I was younger and just learning to cope with my Tourette’s, my tics would make it difficult to focus in class. Having an eye blinking tic or neck tic would make it difficult to read. Nevertheless, I pushed myself to make the honor roll every marking period from third grade on.

Whenever the classroom got quiet and the teacher was speaking, I would feel the eyes of my classmates burning deep into the back of my neck. lt was as if they had laser vision, with eyes fixated on me, examining my every move. Regardless of whether anyone was looking or not, I was different, I stood out and thought they were staring at me.

I would try to suppress the tic. But that’s just like trying to stifle a sneeze or resisting scratching an itch. Eventually you just have to do it, just as I do when the urge reaches that point of becoming no longer bearable. With time, therapy, and educating myself on Tourette’s, l’ve learned to adapt to the struggles this disorder entails.

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