I’m in a spaceship. Wires taped on my face. On my fingers. On my ears. On my soul. I’m wearing a helmet that’s twice my size and I can’t move. Someone is driving. Someone is drilling. Someone is screaming. Someone is eating an apple. My shoulders are up to my ears. My face is just — making a face. Emotions. Someone burps. Eats cereals. My brain goes into overdrive. A tear rolls over my cheek, the drop full of mascara and hope. Hope that it’s over. Hope that I don’t have to hear more of this. I’m alone in a magnetically shielded room and, given the circumstances, I think I’m doing pretty good.
This is not a post-apocalyptic world, and I haven’t been abducted by aliens. I’m in a very real neuroimaging center on Queen Square, in London. In my very real reality of being a dysfunctional human being. Volunteering in a study led by one of the brilliant doctors who cared enough about my pretty-unknown and quite-rare disorder to prove it exists.
I’m here because I hate sounds. Some sounds. Loads of sounds. I like bearded men, but the sound they make when they run their fingers through said beard … it’s like sandpaper in my ears. I love strawberries, but the sound they make when they’re devoured makes my lacrimal bone go weak. And l love you, but the sound you make when you’re living makes me want to die.
Until 2016, the name people gave to my disorder was relou (that’s “annoying” in French). I never really accepted that diagnostic. But there was no better one. So I considered myself relou. And I did for a very long time.
I’m six, maybe seven, when it starts. My brother is two years younger. I hate him. Not like siblings hate each other. I just really, truly, deeply, strongly hate him. (We’re good now.) I can’t explain why. I’m a child. I can’t explain anything yet. But I hate him. And there’s one thing he does that is unbearable. He clicks his tongue. Too often. For no apparent reason. He fucking clicks his tongue. (Sartre’s “Hell is other people” would have made a lot of sense to me then.) When my brother understands that he has the power to kill me on command, he decides to use it. He’s five years old. He’s dumb AF. And he’s my biggest threat. My parents can hardly punish him for clicking his tongue. So instead I get a lot of “Oh, come on” or “Grow up.” And my brother keeps tongue-clicking. Incessantly.
I’m in a spaceship, crying, because someone is vomiting in my ears. I want it to stop. But I want to help the doctor prove that I’m not relou. I’ll do anything for everyone to know that I’m not relou. So I stay still. And listen to the sounds.
The more I grow up, the more trigger sounds I develop. There’s chewing, whistling, typing, and French kissing. But also crispy things, and watery noises. Burping. Snoring. Foot tapping. Candy being unwrapped. Beatboxing. Knuckles cracking. And nails — anything nails. Plus whispers. And even things that pop. Anything that pops. Stop popping stuff. The list is long like Shaquille O’Neal’s legs.
The more trigger sounds I have, the more hatred runs through my body. The larger the gap between me and the rest of the world, which doesn’t understand what’s wrong with me.
The more I grow up, the more I learn to live with my condition. The singers that come through my phone are my best friends (I’m still standing largely thanks to 1999 and 2002 Moby), and having a low-battery signal or losing my headphones is synonymous with tachycardia. I wear them pretty much all the time. At work. At home. In the street. I feel protected by them. Sometimes there’s no music on. They’re just there. In case. Ready to rescue me.