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, 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 responds to changes in the body so triggers like a flood of adrenaline through the body meant that my ability to control my body's convulsions (or tics as we call them) would send searing pain to the nerve endings recently cut by the breaking of my left clavicle.
A very vile cycle was created and no matter how hard I tried I could not get out of it. My body was acting against my will, doing as it pleased, which was to torment me with repeated bursts of agony.
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. How this guy knew of Dr. Cadman I will never know, but I am thankful that he did.
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. When he gathered all the data he needed he introduced himself and asked my mother to schedule an appointment with him sometime soon. He said that he would clear his calendar 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, through a childhood made infinitely more complicated, and a decade of adulthood trying to convince myself that it wasn't really apart of me, that I was "normal".
"Tourette's Syndrome" he said. "I haven't seen a case quite like yours in all of my time working with it. I want to help him learn how to live with it well."
A few days later I found myself on an exam table with Dr. Cadman describing to me everything that I had been feeling for as long as I could remember. He gave me words to use, and more importantly helped me to see that I was not alone.
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. Like with so many living with T.S. my adolescent years were hellish. Raging hormones created a tornado inside of a hurricane for me. 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 reflect. I went to some dark places in those moments. Maybe I'll write more about them some other time. But for now I can say that my parents' loose affiliation with the Tourette Syndrome Association got me through that incredibly difficult time.
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, then images of them and their embarrassing looking tics would force me to accept myself in a new way. I wanted to be "normal" and not the Tourette kid in my school.
After a brief period in upper elementary when I was treated like a micro celebrity, I quickly realized I didn't want the help that I clearly needed. I resisted my one on one tutors, and despised the term I.E.P. By the time I was 10 I already resolved myself to pretending that it didn't exist. This meant that I needed to stay away from anyone that would shatter the mirage.
But one time, as a poor family from the Appalachians I wasn't given a choice and I was brought kicking and screaming to Veterans Stadium in Philadelphia. I knew we were invited to a Phillies game, but I didn't know any details other than that. So I was initially very surprised when my parents had my name put on a list, and once confirmed we were immediately 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 as I sat stunned, and much to my chagrin, felt my heart melting at the idea that these people knew me, that they were me! And then it happened. A man walked out wearing the friggin Phillies uniform and introduced himself. "Hi everyone, my name is Jim Eisenrich and I am so very excited that you could join me today." I do not remember a word that he said, but his facial twitches and neck jerks have been seared into my mind. 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! AND he lives with Tourettes Syndrome! 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, this moment 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 difficult. If the tics weren't acting up it was usually because my triple diagnosis friends, O.C.D. and anxiety were taking a turn with me. As I look back now as a man starting his 4th decade I have the benefit of a little hindsight that midlife brings. I now know that this condition and its friends who are often co-diagnosed with it, are not a plague. It's not something to be ashamed of, and in fact, it has shaped me in very unique ways into the man that I am today. If it were not for having to learn how to embrace Tourette's syndrome in my life I do not know who I would be. But I can say with surety that I don't really care because I very much like the man I have become.
PART 2: LESSONS LEARNED
Resiliency and Perseverance:
By the time I was 25 I had chosen to go off all of my medication and had for the most part learned how to hide and control my Tics. With the clarity that post adolescent hormonal consistency brought me I began to learn how having Tourette's had shaped my development.
My capacity to endure is very high. Degree of difficulty? Set backs? Elongated timelines? Shooot son! (Brushes shoulder with back of my hand). In 3rd grade I had to learn how to deal with the fact that it was going to take me about an hour to read an assignment designed to take 20 minutes. Almost every assignment from every teacher for all of my school years brought the same increased levels of mental exhaustion and emotional self-degradation. By the time I entered my Sophomore year in college, and students around me were vexed by having to study 2 to 3 hours a night, I had been forced to build capacity to survive. This has translated in every area of my life and has served me well as an entrepreneur.
SUPER HUMAN EMPATHY AND INTUITION:
I am a part of the generation that has seen Tourette's Syndrome reach periods of intense interest from the public at times. Growing up I watched documentaries and talk shows featuring people living with the condition, have had long chats with friends about how "What About Bob?" and that one "South Park" episode accurately and not so accurately address life with T.S. I had to learn how to read people quickly. Are they interested in me because of curiosity? Was my purpose with them to be a relational side-piece? Something to talk about with their group of friends? Did someone want to be my friends because they needed someone to pity? Or was my Tourette's just another interesting thing about me that added another sweet layer to a deepening friendship?
I've had to deal with bullying in high school regularly. Me simply existing close to them required kids to tap into a reservoir of patience that most cannot access until well into parenting years. When their patience was gone and their frustration boiled over they retorted to impulsive angry mockery. A few did target me specifically, as I was an easy one to go after. Therapy and growing up has helped me to understand that brutal part of high school. Also, my experiences have given me eyes that can quickly see the hallmarks of "down and out". The truth is that everyone has periods of life where we are just simply wrecked. I am able to meet people there in their "at wits end". Not in pity, or out of a desire to have a project, God no! I know that place well and can easily sit with them metaphorically and literally until they see the light again.
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, as well as literally everything else he has created. But, if you are in the trenches right now in the midst 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 eventually. And the tools that the current season are giving you will be powerful and a great aid. Until then, keep the next three ideas in mind. Maybe they will be as much of a help to you as they were to me.
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 you need to find yourself some heroes who can stand as reminders of what is possible for your future. Jim Eisenreich, Tim Howard, Dan Aykroyd, Billie Eilish, possibly Mozart, Howie Mandel, Carrie Ann Inaba, and more have all found success in their fields by turning Tourette's into a friend. 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 and mentors.
Try to enjoy the uniqueness of the journey:
Your life whether you like it or not is permanently 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. Just a moody one! Never let yourself forget that 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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