NJ Walks for TS really making a difference all over New Jersey

My name is Sarah. I’m a senior in high school, a Youth Advocate for the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) and Youth Co-Chair of the 5th annual NJ Walks for TS event in Mendham, NJ.

I am writing to urge you, your family and friends to come out and join us when NJ Walks for TS at Mendham on November 15. Click here to register.

All proceeds from this very special event support the NJCTS Education Outreach Program which provides information and training to teachers, doctors and students statewide to ensure greater understanding and acceptance for kids and adults living with Tourette Syndrome.

I have been a part of this program for the past four years and have personally presented a message of acceptance and stigma-conquering facts to well over a thousand school kids, teachers and doctors.

Not only does the program educate professionals but it provides kids like me with an opportunity to develop skills as a public speaker and advocate; and it also strengthens my ability to deal with my own Tourette Syndrome diagnosis.

Parents of kids with TS also present workshops to teachers and doctors and TS experts join our team to present grand rounds at hospitals in every part of New Jersey.

To date, more than 60,000 NJ teachers and doctors have attended our presentations. Please help this program to continue to grow by giving generously to our Walk and throughout the year.

We are happy to provide any additional information on this and other NJCTS program offerings. Thanks for helping us make an enormous difference in the lives of so many kids and families.

See you on November 15 when NJ Walks for TS at Mendham. Here is another way you can participate, too!

It is what makes us family

This whole month has been a crisis. Just when you think it is over, you think you have it all figured out, you don’t; or at least I don’t. I have gone about three years without taking medication. But all of a sudden it is all back and worse than ever. I cannot even walk into a library without feeling uncomfortable.

I was yelling metal and coffee, like seriously. I understand it is a part of me and everything, but no matter how much i try to cope with it, it just will keep digging and digging and won’t stop until I feel super uncomfortable. I just don’t know what to do anymore, I don’t want to go back to medication, I can’t ignore it, it is so obnoxious.

And I know a blog could be inspirational, but I just am being honest. This is really getting old and I hope everyone out there is doing great, all I know is that going to school and realizing you have something that other people weren’t born with makes you feel so uncomfortable, and don’t know if they will accept it.

I just am stoked for the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) 5th annual NJ Walks for TS at Mendham on November 15! This one will be so fun, and that’s honestly what I am looking forward to. So if anyone can make it out this year, I hope to see you there.

But just so all you know, having Tourette brings all of my fellow ticcers together. We’re a a family and we don’t let anyone get us down. Keep your head up, This has been the 10th year for me living with Tourette and I plan have it as a gift instead of a curse.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

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.

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.