I Have Tourette Syndrome and Why I Love It

Famous Marvel Universe screenwriter and producer Christopher Markus said, “hardship often prepares an ordinary person for an extraordinary destiny.”

He couldn’t be more right. 

When I was 8 years old, I was diagnosed with a rare neurological disorder called Tourette Syndrome. (aka TS)

This is my story of being diagnosed with TS and why I love it. 

The diagnosis. 

It all started when I was about 7 or 8.

I started having these weird, uncontrollable movements with my body.

I couldn’t explain them. My parents couldn’t explain it. No one could explain it.

At first, these uncontrollable movements came in the form of flexing certain parts of my body like my hand, arm, or neck. Then, I eventually started making weird sounds that I couldn’t control. The sounds were even more unusual, like small grunting sounds or a faint barking. (I know, it sounds really weird) 

It was insanely scary. 

My parents didn’t really know what to do so they sought help from neurological experts and doctors where it was finally determined that I had a rare neurological disorder called Tourette Syndrome. (aka TS)

The worst part: I was about to enter my tween and teen years with an affliction that awkwardly drew attention to myself through very unnatural means. The tween years and teen years can be mean and cruel, and that’s without without drawing attention to yourself with TS.

Here I was making noises and movements that resembled something out of the Rob Schneider movie, Deuce Bigalow: Male Gigolo.

The next 5-10 years would be pretty tough.

What is Tourette Syndrome (TS).

First, let me explain what TS is not.

TS is nothing to be scared of. It’s not a disease, it’s not a bacterial infection or a virus. You can’t spread it by shaking someone’s hand or by breathing on someone.

TS is a neurological disorder. Meaning, I was born with it. 

To give you some context, here are some common types of neurological disorders that you’ve probably heard of, that are similar to Tourette Syndrome:

  • Epilepsy
  • Alzheimer’s
  • Multiple sclerosis
  • Parkinson’s disease

TS is nothing like the devastating nature of Alzheimer’s, Parkinson’s, or Epilepsy, but living with it (especially as a kid) is still hard. 

TS is characterized by one main symptom: repetitive, involuntary movements and vocalizations called tics. Remember the weird movements I talked about earlier? Those are called tics.

Tics are a part of life for TS’ers. Tics can change, they can go away, and they can get worse under stress.

That’s what TS is and isn’t.

Living with Tourette Syndrome (TS).

The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years.

TS occurs in people from all ethnic groups; males are affected about three to four times more than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics.

Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their teens, with improvement occurring in the late teens and continuing into adulthood.

While having TS is challenging, you can live a pretty normal life. 

Normal being running, jumping, making decisions, and doing long division. 

Dealing with Tourette Syndrome (TS).

In many ways, I felt like a guinea pig in growing up with TS.

Not only was I on medications that had other unintended consequences, but there wasn’t much in the form of support, outside my family. 

Dealing with TS wasn’t as simple as taking a magic pill and the problem went away.

Dealing with TS was far from easy. At the time, the late 1980’s, TS was rare. Less then 100,000 people worldwide were diagnosed with Tourette Syndrome. That’s less than .002% of the entire world’s population being diagnosed with TS. 

If only there was an actual easy button, like the Staples commercials.

I dealt and coped with TS through a variation of ways, some good and some bad.

  • Medication helped me cope, but it also messed with my metabolism and caused weight gain. (as if having TS and being a teen was bad enough, I was instantly the resident chubby-kid)
  • I would cope by isolating myself from the shame and embarrassment of not being able to interact with my friends because my tics were so bad. 
  • I struggled with a negative self-image of myself because I was overweight and stressed, and I was suicidal and depressed. 
  • I read books and comic books. (Silver Surfer was my favorite comic hero)
  • I would write.
  • I even read the dictionary and encyclopedia when I ran out of books to read. 
  • I played baseball up through little league and developed a love of soccer.

Dealing with TS has other interesting challenges, too. I tend to be a perfectionist, who hates clutter on desk surfaces and counter-tops. I rearrange things when I travel and even fluffy carpet needs to be pointed 100% in the same direction. 

Sounds nuts, I get it. I’ve had to get really creative in working through the struggles of having Tourette’s. Looking back, however, I wouldn’t trade the experience of dealing with it for the world. 

What I learned from Tourette Syndrome (TS).

Christopher Markus, one of the screenwriters for the Marvel movies, said “hardship often prepares an ordinary person for an extraordinary destiny.”

I believe he’s right.

You can consider hardship as this terrible, unfortunate event, which makes you hard and bitter. Or, you can use hardship to learn and grow.

I’ve never viewed hardship, trials, or failures as a bad thing. I’ve always viewed trials and hardship as something to mold me and shape me. 

Don’t get me wrong, I don’t enjoy pain or humiliation. I don’t think any reasonable person does. But, I also understand that trials in life exist and that life isn’t fair. Not everyone wins, not everyone gets a trophy (and shouldn’t) and not everything is rainbows and unicorns. 

Even though life ain’t always fun and sometimes you wonder if the good Lord is punishing you, you must choose where to emotionally live.

When encountering life’s trials and hardships, you have the freedom to chose how it affects you. We all have this freedom. You can choose to live in these circumstances or you can choose to move past them and focus on finding the joy in your situation. 

A CEO friend of mine put the word grateful into his companies core values because of how impactful it is to find joy when walking through the valley.

When battling the symptoms of TS, in the in the thick of my teen years, I was ridiculed by my fellow students, mocked by mean kids, and teased incessantly. I wanted to die. I thought my trial would never end and most days wanted to be invisible. 

Then it all changed. 

How Tourette Syndrome (TS) changed me.

As I grew through my late teen years, many of my more severe tics and symptoms of TS went away.

I eventually stopped taking the medications that helped subdue my tics, and my body returned to normal. 

My tics slowly went away and my confidence improved. I began the journey of healing through many of the emotional hurts and wounds I had experienced during the worst times of growing up with Tourette Syndrome. 

It was like a new beginning. I refused to be a victim and refused to live defeated. 

TS has changed a lot about how I view things.

At 40, I now view trials through a different set of lenses. My life, and yours too, is a direct reflection of the perspective we hold.

When you and I look at the state of our lives, what does it reflect? What does it reflect about who you are and how you see yourself? What does it reflect about your relationships, your work, your hobbies, and your purpose?

Is your life merely happenstance, or are you intentional in creating a life that reflects a rich tapestry of moments?

TS changed me in that I started to realize that my life doesn’t need to be an artificial state of bliss, yet it doesn’t have to be dead, either. Just because I have a physical ailment that’s awkward and sometimes embarrassing, doesn’t mean I’m doomed to living a pessimistic, monotonous, and frustrating existence chock full of cynical patterns.

I love that I have Tourette Syndrome and that the experiences of living with TS refined my attitude. I embrace my 32 year old diagnosis because it’s a part of me that’ll never change. I’ve overcome many things that others have not. I’ve learned forgiveness, perseverance, and empathy when many around me will never get to endure this life-lesson.

What’s your Tourette Syndrome?

Everyone has a “thorn”, or their own version of Tourette Syndrome. 

In 2 Corinthians 12, the apostle Paul writes, “Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away…but he said “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses…I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

That “thorn” is some weakness or experience that’s shaped you or impacted you, something to keep you grounded because of your weakness. For me, that grounding is in Christ because I am weak, so His grace and strength lifts me up. 

Maybe you’ve struggled with, and beat, breast cancer.

Maybe you’ve gone through a divorce, or the death of a child or spouse. Perhaps you’ve suffered emotional or physical abuse, had an abortion, are a recovered drug addict, or a recovered alcoholic. Perhaps you’ve even cheated death.

Whatever it is you’ve gone through, you have a choice when learning to live with your thorn.

You have the freedom to choose to use this adversity as a means to finding purpose in your life, as well as incredible joy and growth, or you can fall into the common trap of letting something negatively define you as some sort of victim.

Whatever it is you’ve gone through, or are in the midst of, use your experience as your ministry to encourage others and encounter tremendous joy.

And if you’re a fellow TS’er, like me, I’d love to hear from you and encourage you. Email me by clicking here and I’d love to listen to your story. 

 

 

 

 

 

 

 

 

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