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Tourette's Syndrome: An Internal Ally as Moody as Me.

PART 1: A VERY BRIEF VERSION OF MY STORY WITH TOURETTE'S


THE BEGINNING:

The story I'm told always starts in Louisiana where I lived for the first few of my formative years. "I still remember how you would randomly break out and what seemed like a tantrum with no real trigger. You would just start shouting and smacking us."my mother would say before finishing with dramatic flair "The doctors on the base said you were acting out because of the difficulty of leaving home. But I knew better!" She was right as mothers often are about these things.


I had a habit of breaking my collarbone as a child, the first time being at the tender age of 6. A few days after a nasty bike crash in which I ran into a barn (yes, it was the broad side), I was sitting in a little country church for Sunday school.

A crayon that I wanted to color with rolled onto the floor and as I pushed the chair away to pick it up I felt the now familiar "SNAP" of a bone breaking. It is all so vivid to me still, after all of these years, the scratched and dented cream-colored metal folding chairs, the gray and white speckled accordion room divider, the echo of my own agony, the stupified, silenced look on the face of the most talkative Sunday school teacher I've ever known, and my first memory of feeling like a part of my life was out of control. My little 6-year-old body was filled with hormones in a way that it had not experienced before. Tourette's can be triggered by uppers like adrenaline and the high amounts of it coursing through my system meant that my ability to control my body's convulsions (or TICS as they are called in the Tourette world) would send searing pain to the nerve endings recently cut by the breaking of my left clavicle. What I remember feeling most constantly only interrupted intermittently by painful jolts was fear. As hard as my little mind tried, as hard as I concentrated I could not stop my brain from telling my body to flex and twitch. In fact, it seemed that the concerted effort to stop twitching only made my body do it more. It was as if my wires had been crossed by the incident.


THE REVEAL:

When we arrived at the E.R. I was quickly rushed back to get x-rays and must have shared that I could not stop flexing my arm. This confused the E.R. doc who sent a note to Dr. Thomas Cadman, one of the few sub-specialist pediatricians at the hospital. While I was in a recovery room getting fitted with a special brace and sling he quietly observed me from just outside in the hallway. Walking into the room as we finished he introduced himself and asked my mother to schedule an appointment with him sometime soon. He said that he would clear his calender and make us the top priority. It was at this moment that I heard the name that would cling to me for the rest of my life, for better or worse, richer or poorer, I now belonged to a unique group that is linked by the name of a French doctor who died at the turn of the 20th century. My doctor said, "I strongly believe that your son has something called Tourette's Syndrome and I want to help him learn how to live with it well."


A few days later proudly sporting my movement-restricting brace I found myself sitting on the exam table in his office, feet draped over the edge and nervously crinkling sterile the wax paper with my fingers. After a brief conversation with my mother, he turned to me. Over the next 20 minutes put into words the mysterious and often demon-like things that I had been experiencing for as long as I could remember.


 

I felt heard, and even more than that, understood for the very first time.


 

A NEW PURPOSE AND RESOLVE:

In my mind, this marked the official beginning of my journey of learning how to live with this condition that would sometimes be a gift, sometimes a curse, but always present. It is well known to those of us within the T.S. community that most of the time Tourette's goes wild during a child's pubescent years. The raging hormones create a tornado inside of a hurricane for many of us and I was not spared its vengeance. In the moments between the mind-numbing effects of the pills, the emotional fatigue from the bullying, and the searing pain from bouts of tics I had little moments to think. I went to some dark places in those moments. I can say without exaggeration that the PA chapter of the Tourette Syndrome Association saved my life.


In addition to the resources that they were able to feed me and my parents they put together events for kids and families with T.S. I remember resisting several attempts by my mother to go to one. If I went to T.S. camp or a regional meet-up, and I saw other kids dealing with it, and images of them with their embarrassing and angering tics entered my brain I would be forced to accept it in a new way, which was something I wasn't willing to do. I had always been determined to be "normal". I resisted the help of my aids and despised the term I.E.P. I wanted to pretend that it didn't exist, and I was determined to stay far away from anyone, except my doctor, that would shatter this mirage.


But this one time, as a poor family from the Appalachians I wasn't given a choice and I was brought kicking and screaming (only partially because of the Tourettes) to Veterans Stadium in Philadelphia. We were ushered into the locker room that was already mostly filled with kids ticing their hearts out. My resolve to deny the condition's impact on my life had just experienced its first gash. True, a bunch of these kids were here, but if association means I get to sit in the actual locker room of the Philadelphia Phillies before the game then maybe, on occasion, it's not that bad. And then Jim Eisenrich walked out and greeted us. I do not remember a word that he said, but I saw his facial twitches and neck jerks. I felt them, I knew them! Here standing before me, in a crisp pin-striped outfit was a Philadelphia Phillie. A damn good one at that! I saw a future, I saw the potential for this condition to be something other than a complete curse. For the first time, I saw it as a possible ally. This talk changed my life and I can say with deep sincerity probably saved my life.


As I rode an emotional roller coaster throughout my teen years that pep talk in the bowels of Veterans Stadium would help me flip the script and find determination each time despair made home in my heart. I'm not going to sugarcoat it. Life was very, very tough until I got into my mid-twenties when pubescent hormones finally subsided and the new normal of young adulthood set in. From that time on instead of being, very, very hard, it was just hard. If the tics weren't acting up it was usually because the O.C.D. and anxiety were taking a turn with me. As I look back now as a man a few months away from 40, I have only recently started to learn to have grace with myself during these years. Simply getting to the point where I could say with conviction and determination that "I WILL turn this into a positive, and I WILL make it work for me like a superpower" is an accomplishment that I can be proud of.


 

PART 2: LESSONS LEARNED


PAIN CAN BRING POWER AND BEAUTY:

Eventually, the raging hormones of adolescence wained and the years of almost subconscious and instinctual practice bore fruit. Sometime in the middle of my 20's, I got much better at reading myself and learning how to make use of ways to self-calm. I began to learn how Tourette's was shaping my character. I realized that I was damn persistent when I put my mind to a task. I have seen how I have developed an increased threshold for pain of all kinds and how that has played out in both my professional and personal life.


As I started to see some of the positives that came about from living with Tourette I was still unaware of the emotional and social impact. I think that for many who grow up with the condition a focus needs to be put on how bullying, and even little strange looks from randos on the street will impact a young heart and mind. And there is also the reality that a profound sense of loneliness creeps in for many. Even those closest and most caring may not be able to understand the unique trials and pressures that the condition brings. A life with Tourette's can often leave one feeling like they belong on another planet. I think this feeling can be a gift that guards one's heart. But as one develops skills to manage and maybe even make good use of the physical elements of the condition there are some major risks to be aware of. The peace that comes from not having to deal with tics every minute of every day can lead to a sense of false confidence that others will take advantage of.


As I learned to see the value of life with Tourette's I was still very unaware of how these relating issues would make me critically vulnerable. I had learned how to make the tics work for me and how to craft a message around life with Tourette's that endeared me to people, but I was also fragile due to insecurities that were just under the surface. Unfortunately, this meant that I was an easy target for those who wanted to take advantage of my strengths at a time when I was vulnerable, and needed extensive external validation to have a sense of my own confidence. Because Tourette's is such a multilayered condition that will need to be unpacked piece by piece over time, many who live with it will have a season like mine where the dramatic and easily seen aspects such as the tics and Obsessive Compulsions are brought under control. Be careful as you enter this space though.


Only after someone has attained the capacity to take control of the physical manifestations will they be able to really begin the much more difficult work emotionally. In this in-between time, it is very important to have a few people in your life that will in effect "box out" for you. They will keep the sharks and wolves at bay as you go deeper in learning how to make the most of this life with Tourette's.


Part 3: Better Days Are Coming

One of my favorite musicians right now is Dermot Kennedy. His song Better Days is wonderful and worth a listen, Tourette's or no Tourette's. If you are in the depths of your Tourette journey put it on a playlist and blast it as loud as you can as often as you can. Life will get better, not today, maybe not for a while, but if you lean into the pain and immense discomfort you will find your way. And when you do the world will need to watch out! You'll be flying baby!


Find your heroes:

I'm sure that you will have more than a few dark days between now and the time that you break through the clouds. To help you stay oriented find yourself some heroes who can stand as reminders of what the future holds. Jim Eisnrich, Tim Howard, Dan Ackyrod, Billie Eillish, possibly Mozart, Howie Mandel, Carrie Ann Inaba, and more have all found success in their fields by turning Tourette's into an ally. Find yours and let them be your guide.


Find your team:

Tourette's will teach you to find the real ones and weed out the fakers. Your ride-or-die peeps. Find them, trust them, and let them in. Teach them about what you are experiencing even if you don't fully understand it (who does with this thing). Lean on them in your dark days and enjoy the gift of true friends.


Try to enjoy the uniqueness of the journey:

Your life whether you like it or not is marked by this condition. The sooner that you can figure out how to like it, at least at times and in parts, the brighter your journey will become. It may feel like a curse to you and nothing else right now, but it really is an ally. You are learning so much, in such a unique way. Try to enjoy the ride as you go, my friend! You got this.


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