“Oh I don’t know, Tourette’s can be kind of fun. I knew someone with TS and he would throw the “F” word around all the time,” the stranger said with a laugh.
Silence. Suddenly I was bombarded by the image pain of Jake sticking his finger down his throat hundreds of times a day. I was reminded of the time I stood in the kitchen doorway, unknown to him, as he repeatedly punched himself in the stomach, tears running down his face. He was six. I recalled the angry stares of strangers who judged him every time we were out. And I felt my words stick in my throat as they so often do.
Sadly, this is a scenario that has played out in many forms over the years. I have since learned to speak out for Jake and other people like him who live with the suffering that accompanies Tourette’s and OCD. I can assure you none of them are having fun.
When Jake was diagnosed I was under the impression that his biggest problem would be peer bullying. Kids can be cruel. What I have learned instead, is that adults tend to be the worst bullies of all.
Over the years I’ve wondered about this. Why, when adults have so much more life experience, are so many lacking in compassion? How do they justify such insensitive remarks?
As adults we tend to inhabit our own space, both physically and mentally. The longer we remain earthbound, the easier it is for us to grow cynical and care less and less about the “big” world, concentrating instead on our personal lives. Unless a person’s life has been touched in some way by disability, and special needs, I think they just don’t get it. Instead, they are driven by the media’s skewed stereotypes.
All people with Tourette’s curse. False. Less than 10% are afflicted with coprolalia – a tic that causes them to use obscene language. I once met a twelve year old boy who was deaf because one of his tics was to box himself in the ears. I’ve seen a fifteen year old girl in a wheelchair because one of her tics was squatting while she walked. Hilarious,right?
All people with OCD are neat and are germaphobes. Just give them some hand sanitizer and all is well. False. Jake’s OCD immobilizes him at times, making him unable to leave the house. He struggles every day with repetitive thoughts and fears, causing him severe social anxiety. Good times, yeah?
Clearly, there is no humor in these conditions or any others.
So what’s different about how children process these differences. I think that children are simply more connected to the world than we are. They are newer beings on this Earth and are naturally curious. They haven’t been media-trained in the ways of callousness. We have so much to learn from them, and such a responsibility to protect them from becoming hard-edged.
But I think it’s important to note that compassion is more than just caring. As connected Beings we all need to practice empathy more than sympathy. And if we allow ourselves to reconnect with our spiritual side (not religious – that’s completely different and man-made), we will realize that it’s our natural state because we are all connected.
We are the ones whose hearts beat on the outside. The quiet ones who don’t like conflict because it hurts too much. We already feel enough pain.
We are the ones who apologize to every animal we see dead on the side of the road. We feel pain that was never intended for us, but affects us anyway.
We feel like a raw nerve most days. Like every thing we read or see is ladened with a sadness we can hardly bear. And yet, we must.
And this is just who we are on a good day. Who we are often leads to depression and anxiety because we have no idea how to manage ourselves.
We long to shut out the world, if only for a moment, because we feel that we might implode if we see one more homeless person, one more abused animal, one more child in need.
And we help. And we care for. We go out of our way to give…for others, more often than not forgetting ourselves in the process.
So today as I was faced with a BP reading of 161/101, I was reminded of all of this. I let myself run out of my blood pressure medicine. I’ve been so busy worrying about other things in my life, other people in my life that I placed myself in the back of the line.
I talked with my mother tonight about these things – these emotions that are too heavy to carry around day after day, pretending that I’m ok. Why can’t I just forget things, or turn my head and look the other way? Why is it that every sad story finds a home in my head?
Tonight my mother answered that question. She told me that she believes I am meant to be this way. I am meant to be this way because the hurt I feel, leads me to act. I am meant to keep that ache within me as a constant reminder that I am here to help whenever and however I can. And I will. I always will.
However, I am trying very hard to practice the art of self-preservation by being selective about what I read, what shows I watch and who I spend time with. I know I’m not very good at this. But I also know that if I don’t get a handle on it then I won’t be able to help those who need it. As cliche as it is, I’ve got to help myself first so that I’ll be able to help the others who need it.