Lying to my friends, and other facts of growing up disabled
This isn't my usual blog post. I wrote prose about my experience of social alienation as a result of disability. This is very personal. I'm tired of the shame that comes with the "weird" bodily functions that happen when you're disabled. I want people, especially abled and chronically healthy people, to know that shaming people for the effects of their disabilities or illnesses is a shitty thing to do – shittier than our pants at the end of the day. Content warning: eating disorder mention; some graphic descriptions of abnormal anatomy.
I am eight years old. Class goes to P.E., where we run, where a friend tells me I "run like a handic*pped person." I can never finish those mile runs. My knees and ankles don’t move right. It hurts. Doesn’t it hurt for everyone? It hurts for everyone, I tell myself. I lie.
I am nine years old. We go to recess. I couldn’t hold it.
Why does it look like you peed your pants?
I lie. My dog drooled on them.
My dog drools on my clothes too, they say. I sigh in relief.
I am eleven years old. Musical theater is my favorite course in school. We line up outside for our third hour of rehearsal that day. Friends tell jokes. I just pissed myself from laughing. I tie a sweater around my waist and lie: I had my period unexpectedly. So relatable.
I am thirteen years old. A girl invited me for a sleepover. We sit on her bedroom floor listening to music, eating pizza, gossiping. I lie to her.
My soda spilled! I’ll clean it up. Sorry about that.
She doesn’t say anything and I pretend it never happened. I know she knows.
Hello, Doctor. I am thirteen and I keep pissing myself. When will I stop pissing myself?
Drink less caffeine and do kegels.
I stop eating and it gets worse.
I am fourteen years old. I’m on a date with a boy. We walk around the local park. It hurts a lot, but the doctor said nothing was wrong with my ankle. We flirt. My flirting is encased with a lie – that implicit lie saying I’m not in pain and I’m totally fine. I wake up that night and toss back advil. It doesn’t help.
I am fifteen years old. I have a seizure and break my shoulder, dislocate it. People can see a cast that tells them, "I can’t do things, at least for right now." I want to go to that party, but not with this giant thing around my waist. I lie. I post a picture with me laughing about it. It’s funny. I need help to shower and dress myself. I didn’t want to go anyway, I lie. It’s funny. I can’t move my arm for a month and a half.
I am seventeen years old. Hello again, Doctor. What’s wrong with me now? My rectum pops out when I take a shit. It’s called a mucosal prolapse.
Just stop straining.
When I stopped abusing laxatives, it got better. I don’t have to push it in. But it never went away. Friends ask why I take so long in the bathroom. I’m just on my phone like a normal teenager, I lie. I have to push it in. Sorry, I got distracted! I lie. I got distracted pushing part of my rectum back into my body. Oopsy.
I am eighteen years old. I’m at university. We’re all excited about parties, and I’m also excited to learn. Friends dance into the early morning together. I leave at midnight, drunkenly stumbling onto the soft white ground. Where is my dorm? There it is. I told them I was very tired. That was a lie. My shoes are digging into my soul. My body sleeps until two pm without my approval. Why am I so tired?
I’m nineteen years old. We took edibles and got too high. My friend and I cackle. I piss myself, staining my new mattress pad. It’s because I’m high. I lie. It’s because I’m high. I’m normal. Everyone pisses themselves when they’re drunk or high. I lie to myself and shrink.
I am twenty years old. The bathroom in my house, the one adjacent to my room, has mold. We ask someone to tear up the tiles with a jackhammer. He roars a few feet from my head at 8 am. I sleep soundly until 1 pm. That’s so funny, I lie. I sleep so deeply, it must be that I need it. I lie to myself.
All the classes on my schedule are deeply interesting. I feel lucky to learn and learn and learn. I want to devour the information, and I almost succeed. I sleep through my final. I sleep through another final. I lie.
Dear professor, I have a sleep disorder. I slept through construction during the summer.
The truth is, Dear doctor, do I have a sleep disorder? I’m scared. I don’t know why I can’t wake up. Please help. I want to wake up.
I am twenty-one. I live with my boyfriend. My doctor gives me oxybutynin for something called neurogenic bladder; she says that it can happen with Ehlers-Danlos Syndrome. Interesting, I lie. I already knew about that. It’s my fault, other doctor said ten years ago. It’s my fault, I said. Now it’s not my fault. It’s not my fault. I think I’m lying to myself, but I’m not.
My boyfriend is so so funny. He tells jokes. I skip a dose. He makes me laugh and I pee all over our new couch.
I hide, but I don’t lie. He cleans it up and tells me he loves me. Why am I hiding? It’s okay, it’s okay. He’s not lying. He’s not lying? He’s not lying. Wow. What do you mean it’s okay?
I am gross. I am like an untrained child.
I know. But I am gross.
You’re not gross. It’s just pee.
Oh. wow. Is it okay? Is it okay? Am I okay? Is this okay? Am I okay? Am I okay to you? Am I okay to others? Will they still like me if I piss myself? Will you still like me if I piss myself? It’s not my fault. This pill helps me. It makes my eyes so dry when I wake up and it makes me okay. It makes me okay to others because it means I won’t pee myself in the cereal aisle at Trader Joe’s ten feet from the bathroom. I’m sorry. Thank you. It’s okay? Okay. Okay. You will still like me if I piss myself.