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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.

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.)

AJ Sweatt
Website
25 Comments
  1. Amazing AJ. I’m truly happy to know you!

    • Nadra, first let me say that our band must practice, and that practice must take place in a garage. It’s just how I roll.

      But more importantly, thanks so much for the visit and note. It’s good to know you, too. You’re a quality person, and it’s a pleasure.

      Now, get to work on that set list so I can practice.

  2. Wow. GREAT article. An excellent blueprint for success, no matter how you (or any of us) are ‘broken’.

    Keep up the good work, darlin’!

  3. An amazing piece! You give insight a lot of us who are currently going through the rough stages of TS are starting to feel but don’t know how to verbalize. I wish I could make my tics seem normal; mine are indeed disabling, but I see many of the things you mention. We are discriminated against; and in some cases, there’s no point in contesting: yeah, I’m noisy, I’m in your movie theater,and I guess if someone complained, it’s time for me to leave and make another trip to see the movie, because I’m disturbing the entire theater.

    And I love the way you put it; that the bad times never last; so entirely true. Even if what was bad doesn’t change, one’s perception changes and it becomes tollerable. Your tics didn’t really change, but your perception did, and you see the good now. I wish there was a way to let other Touretters trying to cope know this, because the bad doesn’t really last, and they need to know that.

    • And so do you, my friend.

      You’re so kind for saying those things. It’s a kick in the head, ain’t it?

      Just relax. Find the things that you get the most joy from, or that you’ve wanted to learn or try, and focus your passions on those. It sounds easier than it is. But not if just do a little a day. Every day.

      I don’t know you or a thing about you, other than your letter – but it looks to me like that might help you some. Focus outside and away from it. Did you ever see “A Beautiful Mind?” What a brilliant allegory for where we can end up, if we try: walking alongside our demons, knowing they’re there, but choosing to keep our distance.

      Again, thank you so much for the well-written note, your honesty and spirit. You seem like such an authentic person … I hope you have as much fun as is humanly possible. Now go kick it, yo.

  4. Very well written AJ! I had no idea. You’re so fun to be around, and incredibly funny. And good for you for making the best of every situation, that is such a good attitude to have, and an excellent example of how we shouldn’t allow our flaws or handicaps to stifle our potential for success. I can only hope to do the same. I’m so glad I met you!

    • Trudy, it’s so sweet of you to take the time to stop by & drop a note. We’re all in some boat or another, I guess – and it’s important for us to remember that. But it’s hard to do, no? You and Mason rock the shizzle too, BTW!

  5. I was searching for some positive perspective on Tourette’s and found your story. It is wonderful to read and gives me hope for my six year old son who just started to tic. I have had Tourette’s since I was very young and my feeling about it is similar to yours. I had to figure out my condition on my own and decided to make it a positive instead of a disability. I hope to instill that in my son early on. Thanks for sharing this.

    • And thank you for the visit, Luci. You (and your son) are actually in amazing positions to learn and grow together, from some unique experiences. As parents, we all have those chances. For you guys, it sounds like you’ll have more than many others do. You made my day with your note. Thank you for that, too. My best wishes to you and your son. HAVE FUN & LAUGH – A LOT!!!!

  6. Wow! What a profound and inspiring story. It’s so heartfelt, real and transparent and I love that you’ve shared it. Thank you. I haven’t meet you in person but am glad you’re one of my “tweeps.” Looking forward to the day I get to shake your hand. I’m going to share this with a friend whose children have TS.

    • Zara!!! What a nice surprise to see you here, and how cool of you to be so kind & generous. By all means, share this in any way you think it might help anyone – that’s what it’s here for. Tell your friend that I pass on my regards, and thanks for the lift. I’m so happy this can help, even if it’s in some small way.

  7. Hey, AJ, my youngest son has what they now call Sensory Processing Disorder (SPD), which can come in many forms (variations of 1 or more of the 5 senses, of course). Most people supposedly have a bit of one or another, but for some it can be pretty obvious and difficult to overcome. For him, this has meant a lot of rough days in school through the years. Diagnosed when he was 3rd grade (I think?), tried private school for the past 1 1/2 years, and now half-way through 6th, we’re pulling him to homeschool the rest of this year. Lots of associated stress issues. So he’s had the benefit of naming ‘it’ young, and he’s generally a happy kid, but it’s still a matter of working through the ‘it’ to find what works for the ‘you’, and that’s where we’re still feeling our way and helping find his way.

    At any rate, your thoughts and descriptions and the aspects you’ve identified as positives really resonate with me and with the journey Ian’s been on. Thank you so much for sharing, bro, and lots of love in the new year!

    • Man, I can definitely relate to Ian’s issue. Sounds familiar. I know you well enough to know that you guys are all gonna do just fine. If he’s half as smart as his dad, he’s gonna kick it. And right back at you, man.

  8. Wow. Great post. I appreciate your openness and insights.

  9. I did not know this AJ. You are an amazing person. I thought so before just from the little pieces I know from social media and your presentations at IMTSedu and interview on IMTSTV. I am glad to have met you and you have my respect for your outlook on life and for the great way you write about it. I wish I had more time at IMTS to sit with you and really get to know you. Maybe at the next event we can have lunch if you are up for it.

    • Diyana, thanks so much for that … I’m not sure I deserve THAT much credit, but I’ll take it! HA! Next time I’m up your way, we’ll grab a bite. Please give my best to all the good people up there – Peter, Bonnie, LeeAnne, Greg, Steve, and, of course, to you, too.

  10. Thank you for this wonderful perspective. My 10 year old has it. Symptoms have been mostly at home but now symptoms are showing up when playing with friends and at school. Now we have to discuss it with teachers, parents and friends. I like your perspective and feel more grounded in the conversations our family is going to be having.

    • Yeah, Melanie – that’s always the tough part, IMO. As parents, we hope it wanes or just goes away. But when it doesn’t, and becomes so powerful that it creeps into other aspects of their (our) lives, it becomes more of a ‘thing.’ This is an awfully important phase for you and your child – not just because you have to ‘grease the skids’ for learning and discussion, but because the child is more confused than anyone else. He or she is watching what you and the teachers and friends and family are doing right now for clues about what’s going on. So try and focus most on him/her. And relax. It’s just Tourettes. My best to you and your family.

  11. Tourettes has been hell for me, especially with the disgusting and in humane way i have been treated all my life for that, but I realise something that these sick twisted narrow minded imbosiles have done me a favour, who wants to be near and involved with people like them anyway, I pity the sad demented lives they must lead thats all that I am saying

    • I’m so sorry about your experiences, and I know how you must feel. But I also think the one thing you can control are your feelings of bitterness toward them. If I could offer any encouragement, I’d ask you to try and look beyond cheap shots and ignorance to keep yourself open to the good in others. Try not to let this poison you, and keep you open to the good things that will come to you. Otherwise, you might miss ’em.

  12. This is a fascinating outlook. I have watched my 15 year old son deal with severe tourettes for many years. He is on a complex combination of meds that partially controls things. And while he has met with a lot of discrimination and plain insulting behavior from many (peers, teachers, church, community), I can see it has also helped him to develop compassion and courage. I have seen him defend the weak. I have seen him deal effectively with bullying, and speak up for his beliefs. And when his American peers refused to befriend him, he reached out to the immigrant community and now has close friends from many countries such as Saudi Arabia, Israel, England, Iran, India, China, Cambodia and Australia.

  13. AJ,

    Thank you.

    Our 5yo boy has been ticcing for a couple months now and it is getting worse. We are arranging to visit with a doctor and a few hours ago I finally admitted to myself that I think he has TS. I have felt sour, empty this whole sleepless night over it. I have been going over his pre-tic life in my head and it fills my eyes with tears to know the hopes I had for him are not going to go so smoothly.

    Anyhow, I finally had to get out of bed and search for anything with the words ”positive” and ”tourettes” so I could get some needed sleep. That’s how I came across your article. Thank you. I am so confused and numb right now and you helped me gain a little perspective.

    PS- Mentioning Seinfeld AND Tom Waits, two of my favorites, was like a sign to keep reading!

    DGW

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