I wake up in cold sweats in the middle of the night, losing hours of sleep trying to figure out if things could be different, if there is a way to get us back to where we were before. My eyes jolt open and without meaning to, my brain gears go into motion. I know I’m in for hours of not sleeping.
You say “my friend has cerebral palsy.” You mean me of course. You say it like it’s a point of pride: she has cerebral palsy, but look how much she’s overcome. But what you say isn’t strictly true. I don’t have cerebral palsy. I don’t even suffer from cerebral palsy.
I wrestle with cerebral palsy. It saps my energy in a knock down, drag out, hair pulling, sucker punching, war that occurs on a daily basis. My time is spent in our society (perhaps wasted?) fighting fights that should never have the be fought in the first place.
My life can best be compared to being Mark Watney in The Martian. I am on an inhospitable planet, where nothing is built for me, there is no infrastructure for my basic needs, and I have to live a life that no one else has ever attempted. A basic thing like figuring out where breakfast (and lunch, and dinner) is going to come from is enough stress to keep one busy every hour of the day.
Maybe I’ve shielded you from this. I put on a pretty smile and go about my day. As an actor I am trained to live in the moment, a skill that is even more useful if you have a disability. Focusing on the onslaught of possible problems is enough to drown anyone.
Or it could be that I was very honest with you, opening myself up to share bits of my disability I would rather brush under the rug, choosing to show you the vulnerability behind the smile, admitting I was tired or in pain when the world would keep turning if you didn’t know.
Both, in their own way, are the price of friendship, both are the price of love. I don’t mind paying either.
But somewhere, things got off track. I got put on a pedestal and, for a long while, it worked for us. I was the inspiration, the frail beauty that you came to when you needed to feel good about yourself, I was the one you took care of for a day creating Facebook memories and gleaning unforgettable stories along the way.
And then I stepped out of line.
It could have been a thousand different ways but it did happen. Maybe I called you out on the sexist way you were treating your girlfriend when you were dismissing hers concerns by saying “some girls just babble.”
Or there was the friend who when I pointed out her flagrant ablism got so mad she her hid behind her friendship with me as “proof” she was a good person.
There was also the friend who took me out to a show, only to ignore me all night when his all too cute twenty year old student suddenly appeared and started flirting with him (despite the fact he’s already in a relationship). The last words he texted me in a drunken stupor were “It’s not my fault. Stop talking before I lose all respect for you.”
Perhaps you are the friend that played games for years, going months without talking to me and claiming I was the one who “changed” for the worse, only to act like best buddies whenever the time suited you. When you did it again this spring, I said I wasn’t going play anymore. Then you became aggressive, demanding “but I thought we were friends. How sad.”
In all of these cases I wasn’t stepping out of line. I admit occasionally I do just that. I am human (despite being disabled). I do fuck up.
But to the friends with whom I have cut contact, let’s be clear. I quit the relationships because I have too many other battles to fight. I couldn’t fight your expectations and demands as well.
For the five, seven, ten years that I knew you, you may have thought we were friends, but more fundamentally I assumed we were equals.
And this is why I wake up in a panic every night, spending sweat drenched hours listening to the Goldberg Variations and trying to slow my brain down. Because I want to go back to that time when I assumed you weren’t using me as an ego stroke. I miss the days when didn’t know I was some vibrator to stimulate your recuse complex. If I could get back to that state of ignorance and enjoy your company again, I would.
I wake up because for years I didn’t see what now seems so clear. What I have to fight isn’t just my own body. The people’s whose hearts and minds stand in my way, aren’t just faceless ignoramuses in some far off place, easy to be dismissed as ‘backwards people’. They are in my own camp, people who I thought loved me.
In the still dark hours of the early morning, I flick on the blinding blue screen of my iPhone to listen to Bach yet again. I think about going back to you, knowing that it may very well help me rest better for a while. But in the end I cannot make you see want you do not want to know. There is very little I can do to change you.
Yes, I might lose sleep. But I will not waste time.
The Period Route
March 24, 2017
Subtitles? Transcriptions? The debate with disability and media