My Lifelong Struggle with Tourette Syndrome

I had a conversation with my daughter yesterday that really gave me the push I needed to share this episode. I won't go into any details, but I'll just say that my daughter is 12 and she has dealt with a form of OCD that has caused her some pain. This pain has created a very special bond between father & daughter that I would never remove. We sense each other in a extra sensory sort of way. She knows when I am hurting and likewise and we each have a supernatural ability to calm each other. It's a benefit of the lifelong struggle I never thought possible when it started at 10 years old for me. She came to me with a recent struggle and instead of commiserating and allowing her to pull the victim card, I got bold with her and said "You need to get tough!" She was surprised. I went on to tell her that there are no perfect people and that God has a beautiful way of turning our greatest struggles into our greatest victories IF we allow Him to. There are tons of wonderful people with disabilities that have to work harder than we do just to get dressed and start the day, yet they recognize that they will literally have to outwork others in every area to win. They choose not to be the victim. I told her that I've struggled for 33 years, but it has made me stronger. I've had my pity parties, but for the most part, I've used my disability as fuel to win. I challenged her to change the way she thinks. "Stop coming to me with the struggle and asking how to get rid of it. Instead, embrace it and use it as fuel to turn your 'I cant's' into 'How can I's'"! She was energized after this conversation and I truly believe my 33 years of struggle lead me to that one piece of advice that will alter the trajectory of her future. I know for a fact that there are others listening to this episode struggling with the same thing. My prayer is that it gives you hope and a new resolve to embrace your disability, use it as fuel to win, and fight harder every day to achieve the God-given dreams you were put on this planet to achieve. With that, let me share my lifelong struggle with Tourette Syndrome.

I remember playing Nintendo after school with Mike in the 5th grade with this sudden insatiable desire to stretch my arms completely out. When I did it, I felt better. It was like an itch that got worse and worse that needed to be scratched. The movement of my arm scratched the itch. I was full of big ideas and creativity. I was an only child, always playing alone so creativity was my best companion. My mom was finishing her psychology degree and newly married. Many changes were happening in my life. I can remember playing ping-pong with my dad in the basement and the itches expanded to my legs. Now, I had to stretch my arms and legs constantly. These nervous tics only grew from there to nose snorting, squeezing eye blinks, licking my lips, biting the inside of my mouth, neck and head twitches, hand stretching and knuckle cracking. It happened so fast that my 10-year-old brain overloaded and my psycho-analyzing mom could not keep up!

Middle school was torture. It's already hard to enter the teenage years, but doing so with undiagnosed Tourette made it near impossible. I had no idea how to control my tics, nor did I understand them. I got teased a lot. Some kids called me a pig because of my constant snorting. Others pointed because I kept blinking and twitching my head. I went from being a creative, full of life boy to embarrassed, ashamed, shy, and angry. I blew up so easily. To compound things, my mom in her love for her son did her best to "fix" her son. She started parading me to shrinks for understanding. But I wasn't a quitter. I excelled in math, art, school in general with straight A's, bowling, baseball, tennis, and ping-pong. My mom gave me a sister, which was like therapy for my hyper anxious mind. I started noticing that the more excited or stressed I was, the more my tics increased. Playing with my baby sister relaxed me and reduced my tics. This was a vital discovery for me!

This is also the time when my mom attempted the dreaded Tic Chart. She's not proud of this, but it's important to share it as there are moms out there right now that have no idea how to help their kids. My mom made a chart for every day of the week and gave me a tic limit of 30. She said that I had to limit my tics to under 30 for a week. Success meant reward and failure meant punishment. It was horrible. I was consumed in my thoughts with my tics. I had to force myself through the torture of not itching 95+% of the time in order to choose with 29 tics were worth it. Let me just say. It sounds bad. But to my mom's defense, it's all she could think of as the shrinks weren't helping us at all and she was apprehensive to drugs. I succeeded in my mom's Tic Chart and I remember how happy I was to go to Kiddie City to buy a Capsela set. We then went to my mom's friends house and I remember playing with my new Capsela while watching Karate Kid 2. I was so happy. Plus, I was allowed to tic again. It was a bad decision by my mom, but it showed me that I did have control over my disability. This was the second vital discovery for me as I got ready to enter high school. During this time period, OCD starting emerging as well. I would take 10 minutes every night to set my alarm for the fear of missing the bus. Routine became very important as well.

High school was worse. As I started getting self-conscious of everything and liking girls, the tics made me resign to shyness and always sitting in the back of the class. My mom ramped up the shrink visits and she gave in to experimental drugs. None worked and they ALL made wiped me out like I was carrying 2,000 pounds. I can remember working as a bus boy in a restaurant in the 10th grade and being so tired that I'd take constant breaks to lean against the wall. Let me take you inside my head and explain what it feels like. The average person just gets up, thinks something, and does it. Most people can simply have a conversation with other humans. I had to expend tremendous mental function to overcome my internal thoughts of 'am I twitching?', 'what are they thinking of me?', 'what do I say?' before I could make eye contact and open my mouth. Everything in my life was like that. I had to expend 50% of my energy controlling my disability before I could anything to propel my life ahead. My Pop-Pop taught me from childhood that "Winners never quit and quitters never win.". I embraced a winner mentality somewhere in early high school. It was an incredibly difficult 4 years, but I had great support in my family, my close friends never judged me, and I crushed it in school and some sports. I was an math and art prodigy. I was varsity tennis in 10th grade, the 5th best in my school, the best ping-pong player in my high school, and held a 192 bowling average. I graduated in the top 15% of my class (#37 of 237). I was accepted to Penn State Main Campus for engineering. I finally learned how to apply the lessons from middle school without any drugs to control tics. I wasn't as shy anymore and had a few girlfriends in high school. I decided not to play the victim, not only accept but embrace my disability.

I met my bride in college when I was 21-years-old. By this time, I would have passed my mom's Tic Chart test every week and life was getting easier. Don't get me wrong. I still had to consume half of my energy every day just to participate in life like the 'normal kids'. But I was used to it. As I look back at my secondary struggles, so many things line up. I have always been great at hyper focusing on one goal and completing it. But once I introduced a second, the first fell apart. I could never "walk and chew gum" as they say. I chose a career in engineering because I loved math and solving problems. It was awesome in college, but the real world ripped me apart. The job I had at GE was high pressure and I always felt like I was being criticized. The other engineers were looking for the wrong in what I worked on verses the good. This put me into orbit as I started my career. My tics increased with my stress. This is the perfect place for you and everyone else in the world who has asked me this question, "Why did you leave engineering for cleaning?" I could not endure that environment of negative and live a long life. I also struggled big time to multitask with all of the projects GE needed me to complete. GE short circuited me and I looked for a way out. During this time, I starting experiencing neck pain and visited a chiropractor. X-rays revealed that the discs in my neck had worn down due to years of neck twitching. That was another reason to get out of the high stress environment.

I was transformed by accepting Jesus two years after starting GE. Teresa and I started using our creativity in a different way by starting 3 side hustles. One of them was cleaning. Although it was difficult work, cleaning was so satisfying and therapeutic. It relaxed my tics verses enraging them. Cleaning gave me an outlet for my tension and creativity. My wife is my secret weapon as she has found scalp massage helps her husband a ton. She is amazing. I have also found that guitar, outside play, and creative expression help me a lot as well!

The CDC reports on June 12, 2020: "Tourette Syndrome (TS) is a condition of the nervous system. TS causes people to have “tics”. Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. For example, a person might keep blinking over and over again. Or, a person might make a grunting sound unwillingly. Having tics is a little bit like having hiccups. Even though you might not want to hiccup, your body does it anyway. Sometimes people can stop themselves from doing a certain tic for awhile, but it’s hard. Eventually the person has to do the tic."

• Studies that included children with diagnosed and undiagnosed TS have estimated that 1 of every 162 children (0.6%) have TS."
• Among children diagnosed with TS, 86% also have been diagnosed with at least one additional mental, behavioral, or developmental disorder, such as:
•     63% had ADHD.
•     26% had behavioral problems, such as oppositional defiant disorder (ODD) or conduct disorder (CD).
•     49% had anxiety problems.
•     (33%+) More than one-third of people with TS also have obsessive-compulsive disorder.3,4
•     25% had depression.
•     35% had autism spectrum disorder.
•     47% had learning disabilities.
•     29% had speech or language problems.
•     30% had developmental delays.
•     12% had intellectual disabilities.
•     42.6% have at least one co-occuring chronic health condition.
• Children with Tourette syndrome are more likely to struggle with social competence, particularly when they have moderate to severe Tourette syndrome and when they are diagnosed with other mental, emotional, or behavioral disorders."

I have Tourette Syndrome and OCD. There are many similar diagnosis in my family on both sides like bipolar, autism, OCD, Tourette's, depression, anxiety, etc. This family of disorders are genetic as well. I don't share this with many people, but I do want to reconnect with the 6th sense part of this. Maybe this is common with disabilities, but I have always been able to sense when someone else struggles with tics. They may not even know or they are trying to hide it. I can just tell. This knowledge connects me to that person. It's exactly why my daughter and I have such a special relationship.

I want to end with this story. A few weeks ago, I attended the Total Life Freedom Mastermind Retreat in Pittsburgh, PA. I met a new friend there. I noticed right away that Dennis Clark had Tourette Syndrome. I felt funny approaching him about it, but I sensed that he knew about me. Sure enough, we were at dinner and he was so out in the open it surprised me. "I have Tourette's. That's why I do all of these tics." I said. "I know. Me too." He replied. "I know. I saw you licking your lips a lot." This started a connection with Dennis that only two people with TS could appreciate. We shared our struggles and how we overcame. Our stories were so similar that I wanted to highlight him in this episode as well. Here's a short bio of Dennis that he wrote up for me. "I am a freelance photographer at the NY Post. I have been with them for 17 years. I have worked for the NY Daily News, Newsday and the AP before that. I have been a photographer for 25 years. It was hard to break in and get consonant work. Especially with Tourette’s. When I was younger my tics were worse than now. I didn’t fit in, and sometimes said things that make people cringe. Most of the problems I have encountered are being in a scene, crime scene, and police think I’m on drugs because I tic. When I get stressed I tic more, which is common for people with tic disorder. Once someone “labels you” without getting to know you it’s hard to get rid of that label. I feel there are a lot deeper questions to ask then just the surface ones. I feel I would be more Successful if my family supported me and my Tourette’s better." I was so moved at how open Dennis was about his life condition that I knew I would have to do a podcast on it. Then I had the conversation with my daughter and it all came together. 

Are you or your children struggling with any of the disorders I've talked about? Do you relate to my lifelong struggle? Please hear me. Your life will be harder than others. You will have to work harder to achieve the same things others do. You will have doubts, let downs, loved ones who don't understand, critics that put you down. None of that matters. You can find a career like Dennis and I have found where you can excel. You can have a wonderfully blessed family life and not live in shame. You can win. The decision is yours.