Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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Our connection with Tim Howard & NJCTS … in print!

Hi everyone! Some of you may have seen this article on CentralJersey.com last week that talked about “a mother’s connection between her children and a soccer legend.” I just wanted to share with you the e-mail my mom sent the reporter that led to the wonderful story. I hope you enjoy it!

PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, "The Keeper: The Unguarded Story of Tim Howard," about the soccer legend’s life with Tourette Syndrome.
PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, “The Keeper: The Unguarded Story of Tim Howard,” about the soccer legend’s life with Tourette Syndrome.

I know you saw me in the emotional place of just having seen my children beautifully described in a national book, but bringing it home and quietly having the time to read Tim Howard’s book has been a very rewarding experience.  Of course it’s a story of his life in the world soccer stage, but I know that very close to his heart is Tourette/OCD advocacy.

He describes extremely well what it feels like to have tics, sensory issues and compulsions — something that so few people understand.  He also describes his own evolution as a TS advocate and wanting to keep that cause central to his work and how that advocacy grounds him.

It started with contacting the amazing and wonderful Faith Rice (the director of the NJCTS) many years ago, and continued with winning a $50,000 Pepsico grant to support programs for kids with TS (which has ultimately led to the development of the unique and extraordinary Tim Howard Academy — http://www.mycentraljersey.com/story/news/local/outreach/caring-communities/2014/07/17/us-goalie-tim-howard-gives-face-tourette-syndrome/12795993/  and  http://news.rutgers.edu/feature/world-cup-superstar-tim-howard-inspires-tourette-syndrome-program-making-debut-rutgers/20140720#.VI7ITNxb474), and also joining the NJCTS board of directors so that he can help very directly.

It’s been 3 years since our trip to the UK to meet Tim Howard.  Today, Tess is 15, and is homeschooled; Paige is 11 and attending public school and is thriving.  In many ways our trip to meet Tim Howard (and his mom, who is lovely, too) still looms large in our lives.

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Tim Howard’s book “The Keeper” is now available!

Here’s are two excerpts from Tim Howard’s new book, “The Keeper,” which came out yesterday, December 9. The first is from the chapter called “Like Coming Home” and talks about arriving at Everton Football Club:

“At the start of the ’06-’07 season, I step out onto the field at Goodison Park, where Everton plays. It’s the derby with Liverpool, the hometown rivals. I love the feel of the place — the rickety old stadium, as historic and un-corporate as they come. I love the fans, their pure, passionate, and deafeningly loud dedication to the team. I love the fact that the team has taken a chance on me, that they’ve pulled me out of a dark place. Standing there on the field, about to play Liverpool, all I want to do is play my heart out. I’ve come home.”

This one is from an early chapter called “Goals That Matter”, when Howard first learned that he had Tourette Syndrome & OCD:

“I struggle in school — I’m hyperactive, and I have trouble sitting in my seat. My mother, aware of my desperate need to move, to run, signs me up for soccer by age 6. I fall in love with the game. I love the fluid back-and-forth, the challenge of playing a game using only one’s feet. By age 11, I begin to show strange behaviors; I touch things compulsively. I become obsessed with picking up random items for no logical reason. Then I develop tics — twitches and jerks that I can’t control no matter how hard I try. Mom and I learn that I have Tourette Syndrome (TS) and Obsessive Compulsive Disorder (OCD). The doctor tells my mom that often, these conditions have a “flip side,” and he’s seen cases where kids have special gifts. It is only on the sports fields that I feel relief, so I focus on my athletic skills exclusively….obsessively.”

You can read much more about Tim Howard, who is a Board Member of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) here:

New Jersey sub shop to host Tourette Syndrome fundraiser on November 5!

Youth Advocate Tommy Licato has done a lot of awareness work on behalf of the Tourette Syndrome community for years now — and he’s still in high school. Tommy’s incredible efforts on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) once again have yielded an opportunity for people to show their support for TS.

This time, Tommy has teamed up with Mr. Subs of South Plainfield to host a benefit fundraiser on Wednesday, November 5. From 4-8 p.m. that day, 15 percent of all proceeds at Mr. Subs will go toward the 5th annual NJ Walks for TS at Mendham, which supports the NJCTS School In-Service Program.

The School In-Service program educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Tommy has been attending the walk for years and hopes that you will, too! But if you can’t, this fundraiser is a great way to take part. Or you can donate to the cause.

Mr. Subs is at 100 South Plainfield Avenue in South Plainfield. Hope to see you there on November 5!