Nov 12, 2012 |
I have an online friend who suffers from Tourette Syndrome. She’s not shy about sharing her story, but I’m ashamed to admit I often wonder how I will react when the day comes that we meet in person.
I like to think I’m not judgmental or instinctive with my responses. I realize she can’t help the things she sometimes does. When we talk, I feel so much pain for the sorrows and challenges she sometimes endures. But when faced with the thought of being in that moment with her tics, can I be the kind of person she needs me to be? Can I not have that knee-jerk reaction I sometimes have when faced with the unknown, that instant instinct to shush someone else or turn away? Can I not just stand there, not knowing what to do? Can I reach beyond myself to be that compassionate, caring friend; the same as she’s been to me?
Kate is confident. Able. Capable. Accomplished. Her Tourette’s is just a small facet of the wonderful person she is. I don’t want that to define her any more than I want my poverty to define me. It’s just a moment, just a glimpse of the totality of this life.
She often fills her Facebook page with helpful links and wonderful insights. Tourette’s is mistakenly (or often intentionally, carelessly) used as the brunt of Hollywood jokes, a means of excusing bad behavior and foul language in a manner reminiscent of the Three Stooges’ foolery instead of open, honest dialogue.
The truth is, if it’s misunderstood and can get a laugh, that’s what people pay to see. It’s disgusting and disappointing. Society often ridicules what it does not understand, making it all the more difficult to understand it. If it weren’t for Kate, I still would have a minimal perception of her reality. Hers, and the millions more who suffer this syndrome.
Y’all know me and words. I love words. I love their definitions. I love the words behind the words. “Syndrome” simply means a group of symptoms indicative of a particular condition.
But that’s just it. It’s a syndrome. It’s not her. It’s not her life. I’m saddened with the reality that Tourette’s is often the only thing people notice about those who suffer. It’s not just a momentary tic but the overall stigma, the fear and mockery that go with it. To label anyone in totality with just one description is unfair and incomplete.
I’m just as much to blame as other ignorants; I haven’t tried to give much understanding to it before I met Kate. I’m not good at reaching out when I don’t understand something. I assume they don’t want me to learn more; they want me to leave them alone and act like it doesn’t exist. I don’t want to embarrass the other person, and I’m inadequately prepared to offer what they need.
Not Kate. She’s not afraid to say she has Tourette’s, not afraid to share how misperceptions, prejudices, and even bullying are parts of life she’s had to (but shouldn’t have to) deal with. This morning, her Facebook wall had this post:
Tourette Syndrome
Oh, how this reached me, reached into me. Is it my own discomfort that caused me to be one of those insensitive people? Have I unwittingly made fun of someone else, instead of showing them understanding and acceptance? How often have I walked away instead of choosing to stand firm? What kind of example am I setting if I choose to not promote understanding and acceptance, if I choose to not seek it out myself?
What I know about Kate: she makes ornaments. She sells handmade jewelry (I can’t wait to buy this pair of Christmas Earrings). She’s smart. She contributes more to society than a lot of people. She cares. I mean, she fundamentally cares about all of humanity. And through it all, I’ve never heard her complain.
Even though she has a right to. I asked her about this, and she simply said, “It’s hard to complain when there is always someone worse off. I think seeing others in front of me needing help makes me focus on their needs rather than my own…”
Her post made me face my own demons and insensitive behaviors. Whether it’s someone struggling with Tourette’s, anger management, or just a bad day; how often do I think to myself, “There’s something wrong with them” and “Don’t get involved”.
I can be a selfish person. I don’t want to be. I have my beliefs and assumptions and have let them color how I see people. I like to think I’m sympathetic, but I have far to go. Certainly, I’m not a bully. But I see now I’m far less understanding than I could be. I hold no ill-will toward others, but neither do I step out often to help a stranger.
I want to write so much more about society’s misconceptions, but I’ll leave that up to Kate. I’m ashamed of my lack of support toward others. I’m choosing to make a strong effort to look beneath what I see. To get to know the person, not the behavior. No matter who you are: We all have struggles. Some are just more evident.
My motto should no longer be “Live and Let Live” but rather “Do Unto Others”. When I am hurt, confused, struggling, or misunderstood it means more to me than money to have someone come alongside and walk with me, to share my journeys. I want to be that for Kate, and all those I know.
Is it too soon to make a New Year’s Resolution?
And Frankly, My Dear… that’s all she wrote!
For more information, read Kate’s latest Blog post: Is Tourette’s Cursed?
This post is also linked up with Shell at Things I Can’t Say for POUR YOUR HEART OUT
Aug 11, 2011 |
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!
