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
Thank You Molly Jo!
People do need to take time and find out about others and where they are at! Don’t Assume! Thank you again for sharing Kate’s blog :-)
Thanks, Delvin! I found her through FLASHPOINT, and if she hadn’t told me I never would have known. She’s so brave and someone I truly admire.
Hi Molly, we would love to use this post on our blog. Can you let us know if that’s OK? You can either respond here or e-mail us at parents@njcts.org. Thank you!!!
TSParentsOnline recently posted..Embracing difference is key for my son
Yes, yes! Thank you so much. I would be so honored. All I ask is a link back to my own blog so readers can reach me; and please link the post itself here as well. I would love to track comments and interact with your readers. Thank you again for the exposure; both for my blog and for this subject.
Molly Jo recently posted..Am I One of “Those” People?
Thank you! Here is the link to our blog: http://www.njcts.org/tsparents/am-i-one-of-those-people. We hope your words reach many people because they were fantastic!
TSParentsOnline recently posted..Am I one of “those” people?
Thank you for YOUR kind words. I stumbled my way through this post; yet still didn’t say everything I wanted to. Perhaps soon I can have a part two.
Molly Jo recently posted..Am I One of “Those” People?
Bravo, Molly Jo!!!
Sylvia phillips recently posted..Monday November 12, 2012: Bethany Update
Thank you Sylvia. The real credit goes to Kate.
Molly Jo recently posted..Am I One of “Those” People?
This is such a poignant post. There are so many people out there suffering with something that others fail to take the time to understand with compassion. People are quick to pass judgment and make fun of something they know nothing about. Thank you for bringing awareness and help everyone realize that everyone has their own personal cross to bear, that in the end we are all remarkable in our own way. God made us the way we are, and He doesn’t make mistakes so who are we to judge anyone of his creation? We can only grow and become better people with knowledge and compassion.
Kathy
http://gigglingtruckerswife.blogspot.com
Kathy recently posted..My Favorite Place to Write
Thank you so much, Kathy. I do so appreciate your comment. I strive to always be better than I was yesterday, and can only hope the rest of the world will do the same.
Molly Jo recently posted..Happy Birthday, Dot!
I love that quote!
Though I do think sometimes people stare and don’t ask b/c they think it would be seen as rude to ask.
Shell recently posted..I Don’t Speak for the Trees: Pour Your Heart Out
That’s true, Shell. That’s partly why I don’t stop and ask. But that’s different than staring, and I hope I’m never that rude.
No – you are not one of “THOSE” people based on the kindness and the desire to understand your friend and the depth of empathy you show. In this case, you are speaking of a specific syndrome, but if you apply your way of thinking to all the differences between everyone in this world – and more people tried to feel that empathy more, I believe this world would be a kinder place.
A place where Kate, and many others, would not be judged or used as a caricature in a movie.
Kiran
Kiran@MasalaChica recently posted..Handsome in Pink
Thank you so much, Kiran. I appreciate your support. And yes, I was trying to use Tourette’s as a bridge to how I want to treat all people. Thanks for noticing.
Someone emailed me this comment:
“My daughter has had brain surgery and was able to come home early from the hospital and still had her stitches. We had to grocery shop. People were like “Oh my gosh! Did she fall?” or “What happened?!?” or “Poor thing.” I was very happy to share with them the blessings we received by having this surgery. She no longer has multiple seizures per day – she has none. She has no deficits from the surgery, even though the surgery took place in her language and motor cortexes. I am soooo glad people spoke up instead of just looking/staring/whispering around us.”
She asked to remain anonymous to respect her family’s privacy. What a treasure!
Molly Jo recently posted..“What’s the Word?” Wednesday: November 14, 2012
Kate sounds like she really has a good outlook on life. Thanks for sharing about her.