One thing about me that I have never shied away from is the fact that I have Tourette Syndrome, “TS” or “Tourette’s.” I have lived with it my entire life. We didn’t know what it was when I was a kid, though. My Pops would just yell at me, “stop that grunting!” and I would snap back wide-eyed because I had no clue what he was talking about. My Ma used to say she could pick me out at football practice, not only because I was the skinniest kid on the team (believe that or not) but because she could see my “wing flapping.”
My friends were good about it and asked about it sometimes but for the most part, made more fun of the things I did on purpose than what I couldn’t control.
My friend Salem and I were talking recently and she said that her daughter was doing the things I described, little habits and jerking motions or coughs or grunting. We TS folk call these tics. I asked Salem if I could talk to her daughter about it, to see if she had any questions, to ask if she thought it was something bad or just know that others live with this “disorder.”
Salem agreed, and so did her daughter, Graylen. We decided to record the conversation and put it out here for people to hear, whether you have TS or not, whether you know someone with TS or not. I think the chances are that you do and may not even know it.
1 in 200 folks have TS but in my heart, I believe everyone has it and perhaps it never manifests itself into anything noticeable. It is on the “spectrum” somewhere.
According to the non-profit Tourette Association of America website:
- Tourette syndrome (TS) belongs to a spectrum of neurodevelopmental conditions referred to as Tic Disorders.
- TS and other Tic Disorders are not rare. Tics occur in as many as 1 in 5 school-aged children. Some occurrences may be transient, while others will persist into adolescence and adulthood.
- The combined prevalence of TS and other Tic Disorders is estimated to be over 10 cases per 1,000 (1%, 1:100), suggesting that over ½ million children have a Tic Disorder in the US.
- The best estimate for the prevalence of TS is 6 cases per 1,000 (0.6%, 1:160) children, which means that approximately 300,000 children have the condition in the US (based on 2010 Census data).
- There are currently no reliable prevalence estimates of TS and other Tic Disorders in adults but are expected to be substantially less than in children as tics often decline with aging. Mine actually got worse as I got older, but that, obviously, is rare.
- Further research is needed to provide better estimates of the prevalence of TS and other Tic Disorders across all age groups.
CNN wrote: “Many know it only as the ‘swearing disease,’ but only about 10% of people with Tourette’s syndrome swear uncontrollably. People with Tourette’s syndrome suffer from involuntary tics, which can be either verbal or physical. Physical tics may include jumping or twitching. People with the syndrome describe a tic as being like a sneeze, impossible to hold in without extreme discomfort.” This fits me exactly. This is what it’s like.
There are celebrities that have TS like actors Dan Ackroyd and Dash Mihok. Musicians Jamie Grace Harper, Michael Wolff and Billie Eilish who confirmed she had TS when a compilation video of her came out in November 2018. Former MLB star Jim Eisenreich, soccer stars David Beckham and Tim Howard who has also made a lot of public appearances on TS and living with it. Also, Marc Summers who was the host of Double Dare for a long time and now produces many of the Food Network shows, has it, too. Wolfgang Amadeus Mozart (1756-1791) and Dr. Samuel Johnson (1709-1784) both had it. Howard Hughes, too.
I think Tim Howard said it best. “It’s something that I live with every day. For me now in my life, it’s like breathing for me. If I woke up and didn’t have Tourette’s syndrome, it would feel weird — not better or worse, just different. So I’m very happy and comfortable with it,” he said. If I had the opportunity to get rid of it, now, knowing what I know and being who I am, I wouldn’t. It makes me who I am, what I am.
I want to thank Salem and Graylen (and the other girls from the family) for talking with me today. Here is the conversation:
Until tomorrow, same blog channel…
“You know, we don’t all curse.” – Tim Howard