Shaking and Alone: My Life with Tourette Syndrome

My mother has dementia.  She is in the final stages.  She does not really know who I am, but knows I am someone familiar and someone she loves and is loved by.  Recently, I have developed a new tic in which my left shoulder shakes forward.  My tics are worse when I am tired or stressed.  In my last visit to see my mom, I was both tired and highly stressed.  My shoulder was shaking.  My mom noticed and started to copy the movement.  Maybe she thought I was dancing and decided to dance with me in her wheelchair. Though, I could not help but think that perhaps somewhere in her mind was a mom who saw her little 6’7” 260lbs boy shaking, and she joined in so I wouldn’t feel alone.

I was diagnosed with Tourette Syndrome at a young age, especially for that time in 1987-1988 when early diagnoses was rare.  My parents had been getting reports of me being disrespectful at school. I was a very well behaved kid, so it seemed odd.  I had a vocal tic at the time where I had a loud throat clearing sound I would make and one where I’d repeat the time, and I would frequently look down (three tics I still have to this day, though the vocal tics for me are more rare and the throat clearing tic is so quite that it is often unnoticeable). The teacher thought I was doing these to be disrespectful.  I was taken to one of the worlds top neurologists at the Cleveland Clinic, diagnosed with Tourette Syndrome, and was immediately highly medicated.  That started a ten year phase where I was whoever I was medicated to be.

What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological disorder that lasts throughout life.  It has no known cause, and no known cure. It involves uncontrollable repetitive movements or unwanted sounds (tics).  It is often accompanied with other neurological disorders, such as but not limited to, Attention Deficit Hyperactivity Disorder, Anxiety, Depression, Bi-Polar and Personality Disorders, and Obsessive Compulsive Disorder. Tics that involve involuntary swearing or yelling obscene things, as often portrayed, is rare and affects only a very small percentage.

I grew up in a very loving and supporting family.  They were educated on TS, and often actively involved in my treatment.  The treatment for me growing up was mostly a lot of medication.  Each medication to control tics would come with side affects and require a secondary medicine to counter the side affects.  Often, a medication would work for a year or so and then become less effective and I’d be switched to a new medication.  I couldn’t really tell you what my personality was like as a kid.  Outgoing. Shy.  Life of the party. Loner. Happy. Sad. Talkative. Quite. I was all of those things and one of those things, depending on the medication I was on.

In 5th grade, I went through a particularly rough stretch. I was hospitalized for the first time for suicidal thoughts, at age 10.  The answer, more medication. I think lithium was one of the medications. I only remember being very tired and though a normally very active kid and a stand out in all sports, I was not interested in any activity that year.  I was noticeably different from who I was up to that point. I remember that year seeming to lose most of my friends. I was no longer one of the cool kids. My parents worked with the school system and decided to gather my entire class and have a presentation on Tourette Syndrome and share with them that I has TS.  This was one of the moments that would shape my life and how I managed TS.

In 1990, when the presentation on TS was made to my class, few people had heard of Tourette Syndrome.  A year later a hit movie called “What About Bob,” a portrayal of a guy with Tourettes, staring Bill Muarry, came out, putting Tourettes on the national map. The presentation to my class went like you’d imagine one would to a 5th grade class, with just a few kids paying attention.  As the presentation ended, they opened it up to questions.  A kid named Tony asked, “Will he die from it?”  The nurse replied, “No.”  Tony replied, “Darn it!”   Everyone laughed.  It was then that I knew, while I may get support from family and a few friends, I was alone.

My teenage years were tough.  I was always a stand out in sports, especially basketball, but other than that, I don’t remember too many happy moments outside of those shared with my family and my best friend, Aaron.  My childhood was very happy inside my home, but miserable outside of it.  With a big family, and always involved in team sports and theater, I was always surrounded by people, but always felt alone.  I had my battle I had to face, and I felt I was always losing that battle. I never told anyone how I felt, at least I never gave an honest answer.  From the age of 7 at my first counseling appointment, I learned to figure out what people want to hear, and if I said it, they’d let me go back to being alone.  I remember once turning my closet into a little refuge form the world, with pillows and blankets and a light. I wanted to be as alone as possible.

I continued to be heavily medicated on a wide range of ever-changing medications.  I was hospitalized twice for depression.  One of the instances that led to my hospitalization involved me holding a knife to my throat and my twin sister grabbing the knife, hand on blade, and taking it away from me. I don’t remember that or any of the behavior that led to the two hospitalizations, I only know what I’ve been told of it.   As an adult, I know those things were out of character and a result of medication, but as a kid, I did not have a self identity, I was whoever my medicine medicated me to be. I guess the goal was to find the magic combination of medication that would allow me to be me, whoever that was, and to be a normal kid.  We never found that magic combination.

Throughout my teens, the answer seemed to always be to try a different medication.  You name it, I’ve been on it.  After a year of seemingly non stop depression and feeling sluggish, shortly after turning 18, I stopped taking all medications.  I was told I’d not function well, or at all, without them.  I think everyone went along with it to appease me for a while, thinking I’d go back on medications soon. I didn’t.  I went off to college.

College was a very different time for me.  My first semester was tough. I had a roommate, and I jam packed my schedule with classes, activities and groups, basketball and running.  I did not cope well.  But then, I found myself.  There is no other way to say it but arrogantly, I was the man!  I excelled in college.  For the first time in my life, I excelled in the classroom.  I excelled athletically.  I excelled in my personal life, dating the prettiest most popular girl on campus (and eventually married her).  I became involved in a church and quickly started leading Bible studies. I won every leadership award the school had to offer, and even taught a course on leadership while I was still a student. It was in college that I realized I loved serving and helping others (a calling I was too selfish to fully accept at the time, but for the past ten years, I’ve dedicated my life to living for others and helping to fulfill their needs).  Life was great in college.  What was the difference?

In college, I was off medication and free to be myself, for better or for worse.  I was free to try coping mechanisms outside of medication.  I learned that Tourettes didn’t limit my potential; I could keep up with or out achieve my peers in anything I set my mind too. It was then that I learned that I could be off all medications, be alone most of the time, let my tics go wild, but then be highly productive in short periods of time.  Throughout the rest of my life, when I stuck to this, life was good and I was highly successful, and when I strayed from it, life was very, VERY bad.

To understand a bit more about how I cope with TS, you have to understand how tics affect me.  I am one of the rare people with Tourettes and has somewhat of an ability to control them in that I have times when my tics are worse.  If I am tired, my tics will be worse.  If I am stressed, my tics will be worse.  If I am anxious, my tics will be worse.  There is no little to be had in those times for me, even the most simple task takes much longer.  There is also little meaningful interaction with others during that time for me. So, I essentially shelter myself away when there is a chance my tics might not be controllable, which is more often than not.

Odd as it may seem, in the time that my tics are at the worst, when my head jerks down every few seconds making it near impossible to read or focus, when my shoulder shakes eventually tiring out and the muscles of my left arm until it goes numb, and I am all alone, I am most at peace. I let my tics go without any attempt to control them.  I feel free.  I feel weightless. When you see happy upbeat posts from me, or get a cheerful text, it is almost always at a time when I am ticking away non stop, but happy and at peace. The thing is,  I’ve never figured out how to be productive during that time, other than writing.  I’ve also never been able to incorporate other people into that time. Not my ex wife, or any girlfriend I have had since, not my family nor any friends see much of that side at all. It is the time I am most at peace and most happy, and in those times, I am always alone. I know no other way.

Shaking a lot tonight, and alone.  This is my life.  Still smiling.

15 Comments

  1. Awesome Mr. Kelly. My first time visiting and reading a post on your blog. I was watching a movie in which a guy had the tourette syndrome and I could not continue watching the movie. Just the mere thought of somebody actually living in reality with such a syndrome was incredibly shocking. I pray God to strengthen you and make you bigger. I celebrate you. Mr. Kelly you are a heroe.

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    1. I had the same question. I have found that I am truly never alone. It’s been through those difficult journeys that I found HIS promise to never leave me to be true. For me, I would say my greatest growth has come when being alone, yet never alone.
      I REALLY like your writings and will be following. My mom has dementia… interesting journey as I see God in it with us.

      Liked by 1 person

  2. What a remarkable, courageous, and highly influential man you are for typing your thoughts and feelings. I am certain you are helping and inspiring many others who are experiencing mild or serious afflictions like you described in dealing with TS. Tic, smile, be happy and carry on with your life the way you know best. If your thoughts should ever go in the opposite direction when you’re alone, please have the fortitude to reach out to your family, friends, Followers, or me to have a better outcome.

    Liked by 1 person

  3. Good afternoon,

    I stumbled upon your post and continued reading. I admire your positive attitude! It’s also sad at the same time. I know the feeling of isolation too well! In a nutshell I’m a survivor of childhood abuse by my father who was a narcissistic functioning drug addict and alcoholic. I was the chosen one from age 4 to 23 physically yes 23. I ended up in abusive relationships and in and out of therapy, meds etc. I’m 52 still functioning I’m a 6 year cancer survivor praise God! I’m a woman of faith without God idk where I’d be. I have four kids all adults and eight grandchildren. I’m medically retired from the cancer and treatment damage. I have good days and bad days good few and far between. You’re not alone in that feeling. I was not allowed to be in any activites whatsoever, no friends allowed so I grew up not trusting or bonding with “friends ” I’m married now three years, but still struggle since my husband is an ordained minister my illness is from the enemy?! I have a great relationship with the Lord hand in hand. If you saw me you’d never know I have been through anything. I’m attempting to write a book but going in circles with it. Anyhow I was intrigued by your story. I pray God wraps his loving arms around you! God bless you brother! 💝🙏

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