"Wanting to be accepted" hits home for teens with TS

Hello all, I am Harry K and I am a senior in high school. I recently completed all of my applications for college, and like millions of other anxious teens around the country, I’m just wanting to be finally accepted.

“Wanting to be accepted” is a feeling that clearly speaks to everyone.  For me now, it pertains to college, but when I was only 11 and diagnosed with TS, it meant an entirely different thing and felt way different than it does now.

After a frantic call to our pediatrician by my mom saying, “Please fit us in today, my son is leaving for sleep-away camp and must have a tick because he is constantly picking at his scalp,” we were seen immediately. As the doctor and my mom recounted recent symptoms listed on my medical chart I sat half listening, my mind wandering to being at camp soon.

First, it was the constant sniffling and no indication of a sinus infection, then the constant eye blinking, understandably justified by my pre-Bar Mitzvah jitters and now the picking of my scalp; of course it must be just a deer tick. The doctor, however, after piecing together all the information, literally blurted out “he has Tourette Syndrome” and the only reason he could verify this was because his son was also diagnosed.

My mother was in utter shock.  Her instant tearful look said way more than words ever could.  She thought, “How could this bomb be dropped so haphazardly on me, let alone my son? What does this mean for my son now and his future?”  Realizing that I could not be sent to the waiting room alone while my mother had “adult talk” with the doctor, she opted to just leave with me.  In the car ride home, she assured me that I would be fine.  We would figure this out and I would be fine.

What happened next is hugely responsible for why it is important for me to be part of the Teens4TS blog.  My mom became obsessed with her computer. She Googled every conceivable site having to do with TS and became increasingly knowledgeable yet overwhelmed. She made appointments with doctors, read books, copied articles to highlight and review with my dad and unfortunately got a first-hand look at the most dramatic, worst-case scenarios that desperate parents looking for answers posted online.

Information, stories and videos of children suffering from the cruelty of this disorder filled the computer screen day-in and day-out.  It was not until she realized that I was secretly doing the same that things began to change.  We moved from the “gathering stage” to the “proactive stage,” which when dealing with a problem or situation, is a way more comfortable place to be.

I was able to realize how I felt living with TS prior to the official diagnosis and understand that the label was perhaps the hardest component of all.  I was able to think about myself as a whole individual made up of many characteristics and qualities, many much more significant than the TS component.

I was a bright and diligent student, hardworking, a tennis player, a fan of all sports — especially football — a supportive older brother, and a loving and appreciative son.  I confided in friends and dealt with the waxing and waning of my tics to the best of my ability.

I was impacted socially, academically, physically and mentally, but through all of my struggles, I consider myself a successful conqueror of TS while looking back on the challenges which have only made me stronger.  I have learned to live with it and get past some of the issues, in order to get on to the bigger picture, which is ultimately living and fulfilling my goals and dreams in life.

While my thoughts now turn to the next chapter in my life…college years, graduate school, and then eventually my career, I think about the new challenges I will clearly face.  I’ve also come to realize how much better off I would have been if I had been provided the opportunity to privately correspond with others like myself, also inflicted with TS… teens perhaps that feel alone and terrified of the impact of this diagnosis.

After speaking with Faith Rice, the executive director of NJCTS, we mutually decided that it would be a good idea to provide an official space on the web for teens diagnosed with TS to communicate with other teens with TS.  This community will serve as an atmosphere for teens to support each other in their journey to defeat TS, and give advice for what to do in certain situations, socially and academically.

As we blog together and comment on each other’s stories, we can hopefully learn from each other’s experiences, and use this information to better the circumstances of TS in our daily lives and the future.

I would like to personally invite and encourage each of you to share your stories, as I will be blogging as well, telling my story, what I have learned from TS, and some advice that I have picked up throughout the years of dealing with my diagnosis.

I would be happy to respond to any personal questions if anybody has them; you can reach me privately at hdkamin@gmail.com.  Thank you and I hope this blog has a positive impact on you, your family, and your overall experience with TS.

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