Why Tourette’s Syndrome Is The Best Friend I’ve Ever Had

We can learn positive lessons from just about anything, if we keep our eyes and ears open for them.

We can learn positive lessons from just about anything, if we keep our eyes and ears open for them.

There has been much tragedy in my life; at least half of it actually happened. — Mark Twain.

We’re all broken.

Some more than others, some carry their breaks on the inside, and some wear theirs on the outside. But we all deal with something.

No life is untouched by loss or tragedy – it’s just part of the package. It’s how we deal with them that matter most.

For me, it’s been Tourette’s Syndrome.

I’ve had TS my whole life. And looking back, it was probably one of the best things that ever happened to me. As a matter of fact, TS may be the best friend I ever had. Because of what I’ve learned from it and how it changed me, what once seemed like a burden to live with has become a blessing I’m not sure I could have lived without.

Just to be clear, there are two reasons I’m posting this.

  1. I’m often asked to meet with friends’ parents whose child has been diagnosed with TS. I guess they feel that since I’ve ‘made it’ to a relatively ripe age I have some perspective to share. In most of these cases, everyone’s freaking out at the outset, and grasping for some clarity. And that’s understandable – we all want our kids to get a fair break.
  2. This post is about transparency. I meet and work with a lot of people in a lot of industries. Some – but not all – are a little put off or embarrassed or uncomfortable with ‘it.’ I know this, because sometimes there’s just no way anyone this side of Helen Keller could not notice – and these folks say nothing.

So, this is to help some parents relax, and give some of my current and future colleagues the opening to talk and laugh a little about it, if they want to. For everyone in either position, take my word for it – it’s OK. At least more than you might think it is at first blush.

BTW – If you’d like a pretty good description of what the TS symptoms I have can look like, imagine unpredictable outbreaks of Elaine dancing on Seinfeld while imitating Tom Waits singing scat. Only Elaine’s bald.

Here are a few of the blessings and lessons I got from having a friend like TS:

  • Things Are Rarely As Bad As We Think They Are – For the first 33 years of my life, I thought I was as crazy as a football bat. (Of course, anyone that knows me can confirm this based on factors other than the TS, but I digress.) I had no frame of reference, no information, and no name for what would cause me to tic, flail or make sounds. So, I got good – I mean REALLY good – at masking it. I’d reach for things, scratch my ear, clear my throat or make moves that made me seem only restless. Man, THAT was TIRING. Then one day, I was diagnosed – like most people of the time, I’d later learn – from a TV show. At that moment, I had a name. A decal. Something to latch onto and understand. It was like a weight was lifted. But I thought, almost immediately, ‘what had actually changed?’ I still had TS. It wasn’t like it stopped. TS taught me that whatever we’re going through, we often overblow or over dramatize things, especially in the lack of information. If you’re dealing with TS today, you have more information than those of my age had. So, there’s that.
  • Don’t Take Things Too Seriously – Just how good do YOU think I was at Hide & Seek? Yeah, that didn’t go well: “ … 8 – 9 – 10. Here I come!” “BUMP!” “AJ’s in the closet.” The same goes with that whole ‘Marco-Polo’ thing. And I’ll share a secret with you, one that I probably shouldn’t – I don’t have copralalia, the symptom of violent and loud swearing and cursing out loud that’s most often associated with TS. But that hasn’t stopped me from using it on occasion as an excuse. There, now my cover’s blown. The fact is, TS helped form my senses to look for humor in many things that others sometimes don’t. And it’s a good friend that can give you a rich blessing like that.
  • Focus On What Really Matters – I went to a neurologist after I was diagnosed. I thought there was something that might help. He confirmed that I had TS, and we talked about treatments. I tried medication for about 2 weeks, until I found it took some of my spirit and made me feel like I was walking through soup. All to mask the symptoms – and for what? To make everyone else feel better?  To get better at Hide & Seek? I realized that by focusing on our limitations, we make them bigger and more important than ourselves. I wasted a lot of time on that stuff already, and I’m not doing it anymore. I discovered yoga late in life, and I’m a regular practitioner. I’ve discovered running, and I love it. I’ve been a life-long musician, and I’ll rip into a guitar like Orson Welles on a veal cutlet. These are positive outlets that helped stifle the symptoms, and shifted my focus onto things that were valuable in many ways. And this lesson has helped me in all areas of my life. TS, I owe you a cold one for that lesson alone.
  • What Opinions Are Like – It’s an amazing lesson for a white man that grew up in the South in the 50s and 60s – to experience first-hand how many of us are toward others that are ‘different.’ For parents of children with TS, this is usually the seed of their initial fears – that their child will be ostracized, ridiculed or discriminated against. The short answer is: They will be. I was. And they’ll learn to recognize the positive and negative qualities of people through those reactions. And they’ll see where things like prejudices manifest themselves. And that’s a valuable lesson to build a wonderful life on – that all people judge books by covers. TS taught me that I don’t want that for myself, and not to marginalize others in the same ways. And, most importantly, TS has taught me to gracefully transcend prejudices I was exposed to in the South and the military early in life. Thanks, TS.
  • Accept & Overcome Our Limitations – There are so many more successful people than me. But I spent 10 successful years in communications in the US Navy. I’ve been blessed with a wonderful family, and with a son that makes me more proud every day. I have friends that I love and that love me. I’ve had great, great experiences at various engineering, communications, writing and business development positions in my life. I’ve had the great privilege to work with and learn from hundreds of companies in myriad industries. And wherever I was, I learned to find ways to work through or around the TS. That’s a debt to TS I can’t ever repay.
  • Be Compassionate & Accept Others – TS has given me a strong sense of recognizing – and overlooking – the flaws in others. I found that while TS helped make me unique, others’ imperfections make them unique, too. Every one of us carries a cross or two, whether they’re ‘visible’ or not. And it’s liberating in many ways to realize that and move forward. In other words, the playing field is a lot more level than we might think it is. I feel I only could’ve developed that acceptance of the value in others from living with TS.
  • Be Patient – In every single case, each initial, uncomfortable reaction by others to my TS passed and led to a deeper understanding and appreciation of each other. None of us are universally liked, but I’ve never found that TS remained as the cause of that.

Oh, don’t misunderstand – there have been plenty of times I asked ‘why me?’ and all that goes with it. I guess we all get down from time to time, huh? But it never lasts, either. I’ve come to the point where I feel like I’ve gotten so much from TS, along with so many great lessons that I’ve only recently begun to understand, that I can’t imagine life without it.

Challenges like TS don’t make us superior or inferior to anyone. They just make us human. And, in a fantastic way, more  normal.

Look, I know well – better than most – that there are those with much more debilitating levels of TS that NEED the sort of help that medication and other treatments provide. I’m not saying no one needs that – but what I am saying is that, for me, dealing with it straight on gave me a clearer perspective of it, and a greater appreciation of its important lessons now. Otherwise, I might have missed ’em.

Should we ever meet or work together, I hope this gives you the confidence to understand that I’m cool if you want to talk and learn and laugh about it, or if you’d feel more comfortable leaving it be. Your choice.

If you’re a parent of a child – or even an adult yourself – that’s been diagnosed with TS, take a deep breath. Relax. Assess the balance between symptoms, personality, and your social conditions as best you can, and go from there. I can tell you that so, so many of us with TS have lived blessed, productive lives. But it starts with love, communication, acceptance and humor. And maybe treatment, but maybe not.

Regardless of your situation and how you deal, remember this above all else – there are often unexpected blessings made to appear as curses.

Heck, I found my best friend in one.

(I don’t necessarily have answers for you. Every journey is as different and unique as each of us are as people. But if you’d like to talk about these experiences, share perspectives, or just laugh some, feel free to give me a shout.)

Written by AJ Sweatt