Monsters Screaming In My Ear

What living with OCD is really like

Confession: I have OCD with severe intrusive thoughts. And every day I see people laughing about how they’re just “so OCD!” because their shoes are color-coordinated, or because they like to put all their pencils in a row.

And no, before you go there: I’m not “offended” by these people.

I am a little saddened, though, about how many people still reduce crippling mental illnesses to a joke, to a catchphrase, to a pop-culture idea; I’m a lot saddened by how deep the stigma and misunderstanding still run. So few people seek help already — and hear me on this one — some of these illnesses can be just as debilitating as any physical disability. And yet, so few people really understand that.

So, let’s start everything at full disclosure of the worst: At one point about fifteen years ago, after a horrible break-up, I didn’t leave my house for over three months. By that point the compulsive rituals necessary to “safely” go out the door had multiplied until the process often took me almost an hour.

I have a horrible memory of being hunched over, dripping sweat because it was 70° in my apartment but I’d already put my winter coat on to go outside, adjusting a stack of parts near my TV for the twelfth time in a row and literally weeping. And then if my eye fell on something else, it’d be that thing next. And so on. And so on. And so on. Oh, and now that same stack I just adjusted looks like one thing in the fourth row down is crooked again? Better fix it RIGHT NOW. Like being in one of my own SAW traps.

Made it to the door? Better make sure it’s locked; and as a synesthete I’ve always had an extra-weird sense of what “feels” a certain way. Nope, it can’t just not turn the knob, or rattle, or open in any way; it has to FEEL locked; is the tension against my wrist just right? Did I hold it for too long?

Quick, turn toward the little pseudo-breezeway, not because you have to check the mail, but because you have to press on the corner of the mailbox lid, with one certain finger in one certain place; firm pressure, not too quick, seven times, if even the tiniest thing is off you have to start over. Doesn’t matter if it’s 15° or 105° outside, rain or snow or sleet, doesn’t matter if you’re carrying heavy, awkward, painfully uncomfortable items, doesn’t matter if you’re sick or shaky or exhausted. You do it until that little voice-that-isn’t-actually-a-voice turns off the panicked internal “PLEASE KEEP SEATBELT FASTENED” sign in your head and something clicks over. Only then do you get to breathe again and move on.

And once you’ve finally made it past the end of the house… you’re free, right? Except… yeah, no. Look, a sewer grate! Can’t we just walk arou — nope, we saw it, gotta walk past it only you HAVE to step on the direct middle of it, and then kick the back of your other foot once, like some screwed-up game of marbles, without breaking stride, or you have to backtrack until you DO get it right, knowing the entire time that it’s ridiculous, that the neighbors think you’re a fully insane person, that it’s taking you 3x longer to walk half a block… but you do it anyway.

And people who laugh, who make it a punchline, have never tried to walk away from that compulsion; that voice which immediately and matter-of-factly informs you that if you DON’T fulfill the conditions exactly, right now, something horrible is going to happen.

You suddenly just KNOW in your bones, in your nerves and your heart of hearts, that IF YOU TAKE ONE MORE STEP YOUR MOTHER IS GOING TO DIE IN A FIRE and it is completely implacable and you can’t take it back and even though you know in your rational mind it’s impossible and your mother is home safe and it’s stupid and ridiculous and you’re literally screaming at yourself inside your own head and begging yourself to just LET IT GO, you CAN’T do you do it anyway because it’s like the Cenobites’ hooks in Hellraiser and the pull is horrific and inescapable. So you do it.

And then ten yards further on, you do it again.

There were a million things like that, great and small, during the worst of it. Everywhere. And eventually I decided that the emotional torture of that impossible gauntlet wasn’t worth the benefits of leaving my house, so I… just stopped. If my few friends couldn’t come by, I didn’t see them. I’d often ask a buddy to go to the store for me. The only thing that got me outside, ever, was walking my dog; he depended on me, and I absolutely could not let him down.

It took years of literal brute force of will, help, and medication to stop that. To be able to be comfortable walking in and out of places. And when I’m really stressed or severely overtired, I still jump in and out of bed to adjust or tap or straighten(SOMETHING AWFUL WILL HAPPEN), but sometimes I can tear(and physical tearing is exactly what it feels like, make no mistake) my mind away from it and manage to shut it mostly down with huge mental distraction. So it’s “better”, in the sense that I can leave my house and function, and has been for a while.

I still can’t stand mistakes in my typing; I’ll erase and re-post an entire piece if something is improperly capitalized or I left out a word somewhere. But these are little things. There are many. These I can manage.

But I fight intrusive thoughts often; whether they’re just strange, disturbing, repetitive, anxious, suicidal — it doesn’t matter, they go around and around and around. What if my test results are bad? I wish I were dead, I’d be better off dead. Oh my God, it’s meningitis, I’m running a fever, I’m starving, what if my blood sugar goes too high I shouldn’t eat I was supposed to finish this thing I’m pretty worthless everybody else did the thing I’m too broke to do the thing but I could contribute so much if I wasn’t broke did I have a stroke the other night? I need to eat, song lyrics images of tragedies oh god why am I here and not there I could be helping oh shit my shoulder popped and the pain is hellacious, what if it stays that bad all week? I’m supposed to Do the Other Thing, I never do the thing I wish I were dead —

I also, due to multiple serious medical conditions, have health anxiety: which is its own separate circle of Hell. Is every headache a stroke? Unlikely, but vaguely possible because I have a condition that causes raised intracranial pressure. Is every heart palpitation seconds before my last heartbeat? Probably not, but it could be. You feel every twitch, every dizzy spell, every moment of tiredness, with the clarity of life-in-danger terror. There is no time to relax. No time to unwind. Even while you’re reading, or drawing, or writing, it’s always there, every breathing second, and let me tell you — constant, unending terror is EXHAUSTING. There’s a reason it’s a form of torture. And, if I didn’t have an outlet at all, I have no doubt I would have buckled under this, all of this, a long time ago. It’s like a backpack full of poison bricks that you can’t put down.

Or maybe just imagine that pic of Chris Pratt from Jurassic World- with the raptors- if there were fifty more of them all armed with multi-bladed razor what-if murder machines. And sometimes when you’re tired, you can’t keep your head up far enough to keep them all in sight, and that’s when they swarm you. Resolving them one at a time seems impossible and fruitless, and you just lie there bleeding to death. A lot of times I tell people that at its worst, it’s like trying to think and speak and make decisions with three people screaming into your ear from a foot away. It’s almost unendurable.

Some days it’s easier.

Some others it isn’t.

I truly believe, though, that art is the singular weapon against the darkness of mental illness. I know that when I’m composing, my obsession often shifts to the piece I’m working on: I’ve been known to do twelve or sixteen-hour binges at the piano when I was in the middle of my opera. (I paint the same way; in a mad rush, forgetting everything else.)

But in doing that, in pouring all that fear and intensity into something that I’m creating, it becomes my sword and shield; it becomes my voice. At the risk of wandering into purple prose, the monster is no longer breathing at my back; we are equals in the arena. I turn around and see its face, and set it down for the world to see. I shape it. I control it. And it comes out of me in a form that allows me to make it understood; to unmask it, if you will. And isn’t the most terrifying beast the one we can’t see or understand?

It’s bloody work sometimes. Like all battles are. And it’s not a cure. But writers, artists, creators… there’s a little bit of madness in all of us, is what people say so flippantly, as if “madness” is a thing to be romanticized. It can be used. Sometimes, it can be harnessed to save yourself.

But before you dismiss someone’s OCD or any other disorder, keep in mind that it might not be what you think it is. When someone tells you they’re suffering, don’t tell them to “just get over it”.

Because that way DOES lie madness. And it’s surely not a joke.

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