May 7, 02:40 AM
In the winter of 2004, I penned an article entitled, 'The responsibility of a disabilityï¿½drivers with Tourette Syndrome, will you please step forward?' . In it I entreated any NASCAR drivers who have been diagnosed with this neurological disorder to publicly acknowledge it. I did it not to embarrass them, or to make them a public spectacle. It was a simple but deeply felt request to do so on behalf of the many families in the United States touched by it.
We all know the compassion and support that NASCAR drivers give to many charitable causes such as The Susan G. Komen Breast Cancer Foundation, or The Autism Society of America Foundation. One look at Jayski.com's Charity Page and it will confirm for you that drivers and teams have big hearts, and help bring awareness to many organizations that benefit those touched by diseases of all kinds. It is my dream that one day the National Tourette Syndrome Assoc. will be on that page as well.
As evidenced by such famous figures as Mike Wallace (the host of '60 Minutes', not one of the three Wallace brothers of racing fame) who has openly discussed his clinical depression, when someone well-known comes forward and admits that either they themselves have been touched by an unusual or misunderstood diagnosis, or one of their family members has, it inspires people to learn about the disorder in a way that no average person can.
I know that it was very difficult for Hermie Sadler to discuss his daughter, Halie's, Autism. No parent likes to publicly talk about such personal family matters, but in the instances of diseases and disorders not so well-known about, it is important to do so anyway. Being open, honest, and willing to educate people about these issues is one sure way of opening people's eyes about them, which helps lead to the next step, the one all special families crave: acceptance. It is an unfortunate fact that what people make up about things they see and don't understand is most always a whole lot worse than the truth.
As a family member of someone with Tourette Syndrome, I am able to recognize the hallmark of the disease, tics. These are uncontrolled repetitive movements that include anything from a shoulder jerk to eye blinking, to squinting or grimacing (for a detailed list of tics, please visit the National Tourette Syndrome Association's webpage or many of the other web pages devoted to this disorder). Being in the presence of someone with moderate to severe tics is a daunting experience, most especially if you do not understand what you are seeing. On the same coin, if you would see someone with mild tics, you might tend to chalk up those movements to stress or nervousness. Either way, you would be a better person if you knew what those body movements meant, and, I'm certain, be much more comfortable (and your ease would register with the person with Tourette, making it a win-win for everyone).
I have been for a few years writing occasional articles about Tourette Syndrome and the impact it has had on my family, and while there have been some individuals who have written me for information or sent me messages of support, I know that as a mere internet racing columnist from a small coal town in Pennsylvania I am not likely to reach a multitude of people. But if, for example, one well-known NASCAR driver would step forward and say something about Tourette, then the message will be heard by innumerable fans, and fans that have a reputation for being the most compassionate and loving of all. This would be a win-win for a whole lot of people.
A few years back I wrote to the PR department of NASCAR and suggested they start a foundation that would include and represent all of the charities that NASCAR supports, making it easier for fans to access the organizations, and for the organizations to spread awareness. At that time the response that I got was a quizzical one which was a great let-down. But The NASCAR Foundation has become a reality, and I am glad that someone out there realized the impact something like this foundation would have, and how many families it would help. That dream came true in just a few years, so I have hope that this dream of recognition for Tourette Syndrome can become a reality as well.
My request, therefore, is as simple as it was a few years back: Please step forward and say what you know about the disorder that you carry, for what this will do for the families affected by Tourette is immeasurable. What people are conjecturing and guessing about is so much worse than the truth.