Apr 01, 2019

Growing Up With Tourette Syndrome

By Lori Draz and Jacob Gerbman

Each month our young authors write, in their own voice, stories that will educate and inform fellow students and parents. If you are a teen who would like to write your story, contact The Journal. We’ll help you polish it up, so don’t worry, let’s just get to sharing!

This month’s author is Fair Haven’s 17-year-old Jacob Gerbman, a junior at RFH with a passion for music, performing, announcing and communicating with audiences. He also has Tourette Syndrome. Through learning to cope with his condition, Jacob unleashed his authentic voice which he uses on stage, behind the microphone at his school’s radio broadcasts and, most importantly, as an advocate, speaking to groups of students to raise their awareness and understanding of Tourette Syndrome. He is an active fundraiser, recently raising more than $6,000 shaving his head to raise funds for the New Jersey Center for Tourette Syndrome. Jacob is living his life center stage. Here is Jacob’s story:

In the Broadway smash “Wicked,” Elphaba and Glinda sing, “Because I knew you, I have been changed for good.” For me, that “you” was thrust upon me on a cold February morning in 2012 at some fancy high-rise doctor’s office in New York City. I was diagnosed with Tourette Syndrome (TS) as well as minor cases of both ADHD and OCD. The one thing from that day I will never forget is that I felt happy, elated in fact. Looking back, I realize what I felt was an extreme moment of relief.

I was diagnosed in the fourth grade. Up to that point, I was having the worst year of my life. I had been showing signs of TS since third grade, and my symptoms kept getting progressively worse. At first, I made coughing noises that my parents and I simply assumed were allergies. Soon I realized this conclusion was far from true. The cough turned into squeaking, which turned into arm flailing and eventually other sporadic body movements and sounds. Something else was wrong, but I didn’t know what. I went to a psychologist to see if the symptoms were related to my anxiety at the time. They weren’t. For what felt like an eternity, I twitched, coughed and squeaked with no control. I felt lost, afraid and scared. My parents were running out of ideas of what it could possibly be, and I was just as lost. School was tough at times. People gave my looks and stares like I was crazy or something, and I don’t blame them. They didn’t know what was wrong with me. I didn’t even know what was wrong with me.

After my diagnosis, I made sure to tell everyone in school about my condition. I became a big believer in the power of knowledge and communication. How can you expect someone to understand something they have no knowledge of? You can’t!  My passion to raise awareness led me to become a youth advocate for the New Jersey Center for Tourette Syndrome (NJCTS). I visited area schools to advocate for other students with Tourette Syndrome who couldn’t advocate for themselves. In eighth grade, I did my first a presentation for one of the fifth grade classes at Deal Elementary School. I can confidently say it was one of the most rewarding, yet also terrifying experiences of my life.

On a personal level, after my diagnosis, I began working through different ways to cope with my TS. Until recently, I took medication for my tics. I also went to the Rutgers Tourette Syndrome clinic where a counselor tried to teach me methods to control and/or surpress my tics. I struggled through, becoming very frustrated at myself and my condition. I was starting to give up, but my mom said I had to decide – I could continue pushing through the frustrations or figure out a way to work around my TS. I knew I would need to learn to accept my TS for what it was. So I decided I would work around and with my condition instead.

Throughout most of my middle and high school career, I’ve learned to plan ahead and keep organized so my TS or my lack of attention from my ADHD won’t set me back in my work. I also quickly learned that my passion for the performing arts was a way to cope with my condition. I noticed that my tics would stop when I was performing in theater or music because I was focused on doing the thing I loved: performing! Recently, I learned to practice transcendental meditation, which I do every day. Its calming benefits help decrease my tics.

Now, I am having some of the best years of my life. In school, I am able to manage multiple extracurriculars on top of my academics, which is something I never thought I’d be able to do when I was in middle school. Most prominently, I am involved in the performing arts, including the choir, drama club and marching band. I just had the amazing opportunity of playing Fester in my drama club’s production of “The Addams Family.” I shaved my head to play the role, and I used that moment to raise around $6,000 for NJCTS!

In addition, I am also a part of my school’s broadcasting club, and I’ve done play-by-play and color commentary for the basketball team live in front of hundreds of people. When I was first diagnosed, I never imagined that one day I’d have the will or the passion to talk to hundreds of people. Now, I love it! And of course, I am still a part of the NJCTS youth advocate program. So if I could say anything to my TS now, it would simply be this, “Because I knew you, I have been changed for good.”