Below is what my friend posted on her Frankly, My Dear … blog today. We haven’t talked much lately, but I guess my daily Tourette Syndrome awareness posts are making an impact on my non-TS friends :)
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 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 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 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, 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:
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, 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?
You are human and doing your best! What a nice post.
Thank you so much; I’m overwhelmed at the acceptance of this post. I only wrote my heart, so glad it’s touched others.
My response on Tic Talk
yes, I can and have been one of those people. I believe we all have in some way. What a beautiful article. This is part of our humanness. It is nothing that I am proud of. I will place her words front and center of my awareness. Before my son became diagnosed I might have turned away,because I was ignorant. I understand that some people are so scared of
being different”. We can continue to educate others and at times our selves when we might turn away from something that is uncomfortable to us.
“What a beautiful article”. Thank you so much for your kind words. I only opened up to say what needed to be said, if not for myself then for so many others who may not have been paying attention until this.
Wow. It’s amazing to see someone “woman up” and admit they were wrong. Kudos to you, mate! Stigma is one of the worst things in this world. It’s basically prejudice.
Thank you. I only hope to be the person I strive to be.
Thank you so much for featuring. I can’t take much credit for voicing these awkward thoughts; I’m indebted to Kate for sharing her world so openly and giving me courage to do the same. My actions/reactions are not always something I’m proud of, but something I do admit to and am striving to better.