The doctors look at you and ask you that dread question.
They asked it before. You answered it before. It never gets easier.
They look at you, while you try to find the right words, and the idea that you sit down and write stuff with any kind of eloquence but can’t tell this story to save your life leaves you flapping your hands in despair.
It’s not hard, surely?
Tell your story. Explain your pain. Do so in as few words as possible but in a way that has you taken seriously as a patient.
Oh, it’s not so hard to describe what pain feels like. Your pain, you know, feels like a joint trodden on by a shod horse. Merlin was the kind of gelding who would stand on your foot and then spend the next two minutes watching you shove at him before finally shifting his weight. No aggression, no intent to injure or maim, just the relentless presence of pain oddly akin to that of a horse who doesn’t notice there’s a toe-filled boot between his hoof and the ground and isn’t bothered by your shouting. Pain is a human boot landing on an insect who had been minding its own business. Pain doesn’t hear the insect scream.
What, metaphor isn’t helpful?
Okay, there’s bruising aches and a racing tingling along with the occasional ground glass now, for some reason, occupying a once-sound joint.
The problem, though, is that you are writer enough to know that isn’t the story.
That describes the pain.
It doesn’t describe what it is to live with the pain.
It doesn’t describe how pain wraps its fingers about your mind and chains you to the wall.
You try, first, with something simple. Reach for a cup or glass. Pick it up. Drink from it. Put it down again. Repeat throughout the day, however many times it takes you to finish a glass, refill it and finish it again. You took this for granted, once. You never stopped to think about it.
On bad pain days, pain shoots through your right thumb as you pick up a glass.
On moderate pain days, your thumb just aches.
You don’t get to take drinking for granted. Most of the time, though, you pick up a glass and drink without noticing the pain. You look back on the day, and you just don’t remember your constant companion. You don’t remember it any more than people are expected to remember breathing. You look back and you forget how much it hurts. You look back and forget that, once upon a time, you lived with the basic expectation that you can always drink without pain. You look back and forget how much it made you hesitate, delay and avoid.
You can’t pick up anything in your left hand. Pain flares immediately when you do. The whole joint gives way. If you want to drink, you use your right hand and hope today is a good day.
How about a pen? Pick one up. Push down the plastic lever that selects the colour you want to write in. Scribble notes on a notepad. Write the time and date and location of a medical appointment in your diary. Colour in a two-centimetre section of a colouring book. Twirl a pen through your fingers. Put it down again. Repeat. Write whole paragraphs of notes or thoughts. Write a list of all the things you need to say to your pain specialist or psychiatrist. Write it in a book because your fingers are too slow and clumsy to easily navigate the screen on your mobile phone.
On bad pain days you can’t pick up a pen. The whole idea is ridiculous. Having to sign slips at the bank when you withdraw money is a form of unnecessary torture.
On low pain days you don’t write at all.
On no pain days you have about five minutes of writing before the pain flares. You want to cry because you’re in an information session about chronic pain education, and because you have a book and a pen in front of you, but you know you’ll be in pain if you take notes. You just sit there and watch, in a sea of people suffering back, shoulder and hip pain, as they take notes. There’s no handouts. You know, because you’re autistic and can’t remember the names of things to save your life, that you won’t remember this information without writing it down. You’re not in pain, but you’re not learning. How are you supposed to be in control of your treatment without knowledge?
You have a box full of pencils, pens and markers on your desk that you seldom get to use for anything other than scribbling phone messages or shopping lists. You leave them there, five years on, while they gather dust. You live in hope. You’re not old. Someday, someday you’re going to be able to write and draw and colour by hand.
Now pick up a pair of scissors. Slide your fingers into the loops of the handles. Move your thumb back and away from your fingertips as you cut through a piece of paper. Hold the scissors open, by twisting your wrist and thumb into the right angle, so the blade can slide across the paper of fabric, minimising the cutting. Feel the handle of the scissors press into the base of your thumb as you cut circles, corners and angles. Feel the pain flare as plastic presses against skin, muscle and tendon.
On bad pain days you don’t even think about scissors.
On low pain days you take extra pain meds so you can keep working because you’ve already complained enough about repetitive hand movements and gotten nowhere.
On no pain days you take pain meds because you know that without them you will be in agony in five minutes.
In fact, you take pain meds before you know what kind of day it is. If you don’t, most of your days are bad pain days. If you wait for the pain to start, no pain med prescribed to you will help.
You’re too young for pain meds. You had to be suicidal before you were put on even tramadol.
Now pick up anything. Cheese slicers, knives. Anything. Try opening the zip lock bags you use to hold a week’s worth of medication. Try cutting up the obnoxious foil housing for pills so you can prep said med bags (in order to know if you’ve taken that day’s proper dose) when you’re on four different kinds of meds multiple times a day. Try holding a book, paperback or hardcover, while your wrist aches and turning the page sends pain jolting through your thumb. Try picking clothes up from the washing line and folding them. Try holding a plushie, and stroking the fake fur as a form of stimming, and shifting the plushie from bad right thumb to bad left wrist every few minutes because even something as simple as holding and stroking a stuffed animal causes pain.
Try not crying when people send you articles for your website proclaiming the virtues of the ink-and-paper word. Try not screaming every time some ableist arsehole talks about “real books”.
(The art you consume and produce is less by virtue of your disability.)
Your sewing box, a creative distraction, calls your name. Some days you can manage. Manage, but if you hold fabric in your bad left hand for too long, you’ll be in pain. Manage, but if you hold a needle in your bad right thumb and pointer finger for too long, you’ll be in pain. Manage, because you’re bored and lonely and you want with every breath in your body to create the way you used to, the way you took for granted years ago, so you’ll do it anyway. Pain is better than depression.
You choose physical pain over the pain of depression, and you keep right on choosing it, because at least, by the end of it, you made something. Society tells you that if you don’t earn, don’t create, don’t express some measure of purpose, you don’t deserve to live. You know that pushing yourself to create just reifies that crushing ableism. You know it and you push yourself anyway, because you want a reason to love yourself the next day when you’ve fallen out of love with the hands that betray you.
Those little things help you survive.
You still sew, because you can manage that, if you’re careful. You don’t make jewellery or rehair dolls, as much as you want to do both, because your thumb no longer allows you to use a pair of pliers. You don’t sculpt, you don’t embroider, you don’t paint. The list of all the things you used to do, the things that make the pain flare after a moment instead of after a few, rests coiled around your shoulders.
You fail to pace yourself on your good days. You want, so badly, just to make.
The wall exists between you and your profession, too. You sit at a keyboard. Type. Rest a hand on the mouse and push it back and forwards across the deck. Push it sideways. Use your right thumb to steady it while your right pointer finger does all the work. Marvel at the pain shooting down your right thumb even though you’re only steadying the mouse and use your wrist joint and fingers to direct it. Even pressure enough to steady it causes you pain, and you don’t understand this, and you can’t explain it to doctors and bosses, for all that you try.
You leap up, walk over to their desk, grab their mouse and demonstrate, but you still don’t see the comprehension in their eyes. You can click a mouse once, twice, and it doesn’t matter. They can’t see the sequence. Fifty times, though? A hundred? Five hundred? They don’t know, like you do, how many times you repeat the same sequence of subtle hand, wrist, finger and thumb movements in data entry, design and word processing. They don’t know the chain of movements you no longer take for granted. They can’t know how much you use your hands in a two-hour flyer job or one short article.
Only you notice the act of grasping, grabbing, picking, holding, guiding, moving. Only you notice the repetition inherent in almost everything you do. Only you know that each sequence of movements is dragging more spoons out of an opaque bag, and only you know that you’ll never know how many spoons rest in that bag or how many you took yesterday. Only you know the delicate balance in trading off bad left wrist and bad right thumb so that you can do something. Anything!
They – doctors, teachers, family members, friends, employers – don’t notice the role your hands play in so much of what people are presumed to be able to do. They don’t fear tiny, incomprehensible movements. They don’t know the relief you feel when you can, on a given day, work without pain, or at least in minimal pain.
You know what it is to be free for that blessed, wondrous moment, and even that is a story too difficult to tell in a way that touches the heart and mind. You can speak it, time and time again, but you know that your telling doesn’t spark the comprehension you need.
How do you tell someone a narrative that bears no relation to their own experience?
They don’t know that, after a while, you don’t notice the pain quite so much. It still stops you from doing what makes you happy, but you don’t notice that quite so much, too. You forget the list. You stop seeing the chains. You feel as though, on a good day, that maybe your pain isn’t so real after all. It’s all in your head. The chaos of criticisms and well-meant-but-awful attempts to encourage feel as though they have validity. Do you spend your day screaming in pain? No, it can’t be that bad! Be glad you don’t have whatever condition is the du jour for comparisons that remind you of your luck and strip away your right to express your grief, loss and isolation.
They don’t know that you bounce from doubt over the validity of your pain to the crushing despair caused by the reawakened awareness of your limitations.
They don’t know that you’ve written more than two thousand words, in pain all the while, and that you seldom write or make anything without experiencing it.
The deepest irony is that you can speak, without pain, but you can never remember the words through anxiety and autism and pain … or you can write, with eloquence, while trying not to cry at the horse standing on your wrist and thumb. What do you do, those days, when autism means the words in your head will not make it to your lips, but your hands are beyond grasping a pen or typing on a phone, and all you can do is choke in the utter, unbearable speechlessness wrought upon you by two disabilities? What do you do when autism and pain take away all ability to communicate who you are, where you are and what you need?
(Pain isn’t your only burden. The notion of a singular disability is a story told by people not you.)
Explain your pain.
It’s the hundreds of repetitive movements you should take for granted, and the more you make these myriad small movements in the quest of living the creative life you yearn for, the worse it is.
If you do nothing, nothing at all, you’re free of it.
The tragedy is that without the story, they just won’t hear you say that nothingness is no way to live, but few doctors have the time and patience to hear a story this long.