On Saturday I bought five books of poetry, a book about psychoanalysis, and a book about sailing from the annual library fundraiser. It was hard to get through the transaction. I felt like my skin was peeling off and I was casually attempting to hold it back without being noticed as the library volunteer asked me to enter my pin number. Smile. Say thank you. Say have a good day. Take your bag. Walk away.
My impulse is to hesitate before each action and contact. I don’t like to touch things without considering them first, without preparing myself. So I have to remind myself don’t hesitate and try not to wince at the contact with my paper bag full of books. Each minor agitation tells me I shouldn’t try to walk home. It doesn’t feel minor. And I was right. Just the sounds in the parking lot made me feel panicked and vulnerable. How could I have crossed even one busy street?
It’s exhausting to try to appear “normal” in this state. While I waited for a friend to pick me up from the library, I tried not to cry and shake. I tried not to let my hands coil and tangle. I tried not to stare blankly too long in any direction or let my eyes dart around in obvious distress. I sat where only people driving by would possibly see my face. The sky was darkening and the breeze hitting my skin smelled like rain.
I texted R (sort of) because I knew he would tell me it’s okay. He did. It helped. You’re safe. You’re okay. Stay here. Sit. Don’t cry. Wait. You can trust your friends.
Experiences like this used to drive me to isolation at home. Days or even a couple weeks would go by and I’d never leave the apartment without R or a close friend. Not even to take out the trash or recycling. I would avoid making any solid plans with people and feel tremendously guilty if I needed to cancel. I tried not to interpret the sound of their disappointment over the phone as annoyance and criticism. I tried not to imagine it if someone texted or called them on my behalf.
It’s easier now to take each day at a time and to recognize that the episode will end. I can’t go for a bike ride when it’s over, but I could go for a walk or wash the dishes. I can make dinner and enjoy the company of a friend.
My mom often used to tell me that as a child one of my favorite things to say was, “I can do it.” I said it with irritation, according to her, as if I was annoyed at the mere suggestion I couldn’t. As if I wanted to prove myself.
As I try to come to terms with being disabled, I frequently have to reaffirm for myself that I can do things. I’m under the impression that this is really common experience for disabled people (and I suppose very young children). How do you acknowledge and make accommodations for your disability without it ruling your life? How can I help other people see the full range of my capabilities while also not misleading them about my condition (which always leads to more complications, inconveniences, and worry)?
Quitting school was not a solution.
Isolation was not a solution.
Hiding was not a solution.
Lying was not a solution.
Stubborn pride was not a solution.
Pretending I would just “get better” was not a solution.
They’re still not solutions.
In the past two months I’ve sold more art and writing than ever before. I’m engaged in two separate collaborative projects and hoping to begin work on planning the next Cat Party exhibition. There are other ideas circling my mind that I haven’t had time to work on yet. My enthusiasm and curiosity has not waned at all.
I guess it’s not something you say. I am doing things to enact the belief that I can still do things. Otherwise I don’t know what I look like as someone who can. I can’t see anything now. I am feeling around in the dark for my well, for the words to connect and for my world to inhale deeply.