NB. I wasn’t going to post this on my blog – I was going to maybe try and post it somewhere in an internet magazine, or even see if I could get paid for putting this up. It’s a bit off topic from my usual autism-centric fare. But after today, I said ‘fuck it’. I want this up somewhere where people can read it, especially since I know so many on the spectrum of neurodiversity – not just autism – that deal with chronic pain. And if I’m honest, I need to let all the sorrow in my heart flow out somewhere. So bear with me.
If Newton’s Third Law is true, it means that for every action, there is an equal and opposite reaction. That means somewhere on this planet, or on a flip-flopped Earth somewhere in the multiverse, there is a hospital where the watchword of the staff is dignity. Crazy, isn’t it?
Imagine it. ERs where Fox News isn’t playing at an obscene volume, jangling already-frayed nerves weighted down with memories of sobs. Desks where admitting nurses talk to you not only competently, but with actual sympathy – even a tiny frisson of something that puts you on the same side of this momentously unfunny cosmic joke, a don’t-worry-we’ll-help-you nod or wink or even handing your insurance card back in a way that telegraphs confidence. Staff of all types who understand what neurodiversity is, how it plays into anxiety, and know to react first and judge later, behind closed doors (because they always judge!). Doctors who have been educated on what chronic pain actually means, and know that endometriosis is depressingly fucking common in women; certainly a lot more common than Munchausen’s syndrome.
In this world, though, I’ve learned that in emergency rooms, moaning too loud is seen the same way as neighbors see it during sex. Your pain is an inconvenience; an embarrassment to be quietly hushed up. This is the American health care system, not an opera house; there’s no applause to be had by telling the world how much you hurt. We all do. Except it isn’t quite true. Not this pain. It’s a unique cocktail, this stuff – your insides are on fire, but then it’s garnished with a gasoline shot of sexism, apathy and suspicion of those who can’t just pull themselves up by their bootstraps, even when they show up at your door barefoot.
I’ve learned that nurses often have the comfiest boots. They’re on their feet a lot, after all. They work hard, overseeing their charges and doling out exactly as much hope and bonhomie as they feel is necessary in their professional judgment. It’s better if they’re female; it’s better still if they’ve had gyno problems and painful periods and stories of OBGYNs treating them like drug seekers, too. If they haven’t, they get comfortable in their bootstraps, pulling them as they talk to you as if to show you how simple it should be to stop hurting and move on with life, why can’t you do it?
I’ve learned that hours in tiny rooms are a new and different level of claustrophobia. You get used to feeling like archive material; you’re catalogued and shelved away until someone moseys down the ward and decides to open the door to take a peek. At least there’s terrible TV and forced conversation to pass the time; it’s a welcome change from being tied to a chair and watching someone you love writhing like the priests aren’t exorcising fast enough. Waiting for a doctor is bad enough – half the time I want to hum the Death March when a doctor comes within ten feet of me. They’re harbingers of injustice, inequality and pain.
I’ve learned that unlike skydiving, job interviews and first dates, the wait is actually not as bad, most often, as the hammer falling. Unless things have gone terribly wrong, most first dates don’t accuse you of drug seeking with voice or eyes or quirk of the mouth. But here, oxygen might as well be narcotic, accompanied by a canticle of well-intentioned but futile advice from baby-faced doctors too young to care so little. ‘Neurodiverse’ is an attention-whoring word in this context, even though it causes different interpretations of pain and is, well, a factor in a person’s mental health care that should be respected, novel as the idea might be. Endometriosis can cause pain so severe that sitting is impossible, even in people with normal perceptions of pain, and yet I’ve seen people mercilessly judged and told in no uncertain terms to get help for their crippling addiction to having a normal life. If this is an addict factory, I think, it is bred from your apathy, not your prescription pad.
I haven’t just learned from people. I learned about rage from the shake attacks that happen every time they hurt you and call it diagnosis. I learned about prejudice and ignorance from every knowing glance and scribbled note – endometriosis affects one in every ten women, but those fuckers talk piously about wanting children and over-exaggeration. I learned about laziness from the records that show that one person could have headed this off at the proverbial pass, and while it isn’t in me to harm another living soul, I fantasize about visiting all my knowledge upon him. I learned about righteousness when I was the only person pleading for the professionals to act on their oath (do no harm, my sweet ass!) and getting excuses in return.
I’ve learned to be thankful for pharmacists who judge not, and for psychiatrists, period. I’ve learned to value quiet time, and value the eyes of the storm. I’ve learned that sometimes you have to drive long hours and go without sleep. I’ve learned that no one chooses chronic pain. I’ve learned that the universe laughs at my desperate need for routine and my pathological fear of failure. I’ve also learned that hospitals keep their internal temperatures bone-chillingly cold, which can’t help the ice in its heart.
Mostly, I’ve learned that righteousness only gets you so far. I’ve learned that this is a scary place. I’ve learned that what stays with you the most is a pitch-black bedroom, where the only sounds are sobs. I’ve learned that very often, your cats are the only people who care, and their inadequate – yet loving – furry bodies placed strategically on painful areas are the only solace you may find.
I’ve learned that no one in the world should have to live like this.
But I’ve learned that I don’t have the answer. And I probably never will.
I didn’t learn that you and all your sisters deserve better from cold emergency rooms, though.
I promise you. I already knew.