by Molly Jo Realy @MollyJoRealy
Kate is a valued friend of mine. We haven’t known each other long, but she’s become important to me. She supports me. We talk almost every day. She never fails to uplift and encourage me. She trusts me. So when she asked me to proofread this essay, I asked a favor in return: to publish it for her here on my blog.
This is Kate’s Story.
Living with Tourette Syndrome there are many things I have come to accept. I accept that there is no cure, I will always be “different”. I have learned to deal with the aches and pains that often accompany my incessant tics. I have learned techniques to minimize my symptoms though I will never fully master them. I have accepted that others will always stare, that some find my loud “wah ahh” sounds funny. I have even accepted that because I am different, being bullied is just a part of my life. As much as I try to educate everyone I come into contact with about Tourette’s, not all will be understanding.
My life is what it is and I had accepted that until my friend Jeromy suggested I read “Twitch and Shout: a Touretter’s Tale” by Lowell Handler. It was great to read that someone else had a similar experience with not being diagnosed until early adulthood. I was enjoying the book until I found myself suddenly enraged by the fact that we faced such similar tales of a lack of understanding about our shared condition, twenty years apart.
Has nothing changed in twenty years? After venting my frustration to my Facebook friends I realized that something has changed. In the 1980’s Handler met very few people who had even heard of Tourette’s. By the time I was diagnosed in 2001 just about everyone seemed to have seen the movie “Deuce Bigelow: Male Gigolo” and while I’ll admit I did find it funny and I love the way he took his “client” with Tourette’s to a ballgame where it’s OK to swear, that perception that Tourette’s is a “swearing thing” made life with Tourette’s even harder. Where Handler encountered people who had never heard the term “Tourette” before, I encountered people who said, “Oh, you mean the swearing disorder?” Or the oh-so-memorable incident in the grocery store when a teenage girl said, “Oh my god, you are sooo lucky, you can just, like, swear all the time.” (She’s sooo luck I didn’t punch her!) In the twenty years between our experiences, Tourette’s had gone from being a little known neurologic disorder to being the punch-line of a joke; one that’s not very funny to those who suffer from it.
The night I read the book, I had a nightmare. I was out with my young friend Ryan. She also has Tourette’s. We were in a crowd when someone started mimicking my vocal tics. As always happens when I feel self-conscious, my tics increased in frequency and severity. The mimicking turned to taunts and my tics got even worse. I had no control of my body and was even unable to get myself and Ryan away from the situation until someone else stepped in to help. Once out of the crowd my rescuer asked if I was okay. I responded with, “I’m used to it, this is just part of life with Tourette’s .” Ryan exploded. “How can you accept this? Is this what my life will be?” While I’m thankful it was “just” a dream, it was actually more than that.
How can I accept that as a normal part of my life? Even before I knew what Tourette’s was, I was always “the weird kid”. I knew I wasn’t normal. Other kids and adults who saw my behaviors as a discipline problem constantly reminded me of that. The bullying I experienced as a child just continued on into adulthood. The guidance counselors always said that bullying was just part of life so eventually I just accepted it. I learned to handle it because I know who I am; those who pick on me, don’t. I never thought of my acceptance of my situation as affecting anyone but myself … until I met Ryan.
Tourette’s is hereditary so I’ve always know that if I have kids there’s a chance I may be the parent of a child with Tourette’s. I always thought of that in terms of fighting with schools and making the tough decision of whether to medicate. I never thought of how my current acceptance of the way things are would affect those who come behind me. But Ryan is behind me. Twenty years my junior, and very similar to me. At ten years old she is reaching that age where the comments will start being directed at her, not her parents. She will have to endure the same ignorance of our shared condition, but why should she? Shouldn’t my having been through it have some positive impact on her future? Is my not standing up and fighting back, not abandoning my own fears and stepping up to lead a campaign of Tourette’s awareness (similar to autism’s Autism Speaks), my accepting that this is just part of my life.. really me accepting it for Ryan? Am I accepting this for all the Ryan’s out there? Maybe it is time for me to move past my fears and do something so twenty years from now Ryan won’t be feeling the same way.
In a recent conversation with Kate, she told me that while there’s a lot of activity to research Tourette Syndrome, not much is being done in the way of actually helping those who suffer from it. She credits knowledge as a main staple in helping her, and enabling her to help others. If you know someone who suffers from Tourette’s, compassion and education is key. None of us are alone. And we all have something to offer. Thanks, Kate.
For more educational information, visit www.tsa-usa.org
And Frankly, My Dear… that’s all she wrote!
I can tell that Kate is a strong person just from reading this post. I say good for her for not just accepting things for the way they are. Show ’em what you got girl.
Thank you for sharing, my daughter was diagnosed with mild tourettes and tics last summer, she is now 11. I hurt for her at night for the muscle pain she was going through, some kept asking her why she was seriously winking at them and then we had her friends that just loved her because she was their friend. We had gone to neurologist who kept upping her dosage on psych meeds. We finally took her off and put her on a high dosage of Magnesium, 8 months later she has very minimal tics. They arrive only when she is very nervous and we are learning how to control them. Thank you for your story, it touched my heart.