When I was ten years old, I ran through a plate glass door. I thought it was open; it was, rather emphatically, shut. My legs were cut to pieces, including an extremely severe gouge to my right thigh. I ended up with a couple of hundred stitches and a chunk of missing muscle in that thigh. It kind of looks like a giant was playing golf using me as a tee and took a divot out of my leg on his upswing. My doctor took a kind of Swedish Chef approach to sewing me back up again and left messy, ropy, uneven scars which, a number of plastic surgeons have told me, represent some of the shoddiest patchwork going in the 1980s.
It took all summer to get to the point where I could walk and run again. I remember the fantastic luxury of getting to spend my days in my mother’s huge king size bed playing Nintendo and reading–and nobody could tell me to go outside and play and get my nose out of books or quit rotting my brain with video games.
Until this Christmas, that was my only experience with compromised mobility, with an injury that brought my life to a screeching halt. This is what’s called able-bodied privilege, and bow howdy, is it a thing.
Carpal tunnel is, if your work involves keyboards, more a question of when and how bad rather than if. Of course I’ve had aching wrists before at the end of marathon writing sessions, banging toward a deadline with my usual barrel-girl over Niagara Falls habits. And yes, my hands had been going numb during those last weeks of the book. I woke up in the night completely fuzzed out from the forearms down. But I didn’t think much about it, because I don’t think about much else when I’m pushing my body to finish a project. And then, some combination of finishing Radiance and immediately sitting down at my spinning wheel for hours on end to make Christmas presents pushed me over a line I didn’t know was there. I woke up, not numb, but in agony, with a burning ache in my wrists and forearms and hands. I was trying to cut up fennel for dinner and couldn’t keep a grip on the knife; I dropped it, my hands shaking.
And that’s how I became the Armless Maiden, the Girl Without Hands.
It’s been this way for two months now. At first, I couldn’t do anything. I had to keep my wrists immobilized completely or the pain was overwhelming. Even laughing too hard or nodding too vigorously jostled my hands and caused pain. I got arm braces, thinking it would help, but they made it worse. After wearing them for three days, the muscles in my forearms weren’t even up to the minimal activity they’d been able to manage before. My world shrunk down until it was just barely the size of my body inside my house. I couldn’t manipulate anything. I couldn’t use my touchscreens–that thumb-scroll motion was too much. I couldn’t type, which meant I couldn’t work. I obviously couldn’t knit or spin or cook or walk my dog. The cold made it worse, so going outside became a needs-only proposition.
I decided I would use the time to read–I’d had so little time and space to read and love books the way I wanted to. It would be good for me. And when I tried to lift a book to read, my hands crumpled. I didn’t even have the strength to hoist a paperback. I burst into tears. You use your hands for everything, everything.
I have never felt so helpless in my life. And embarrassed. Humiliated by the failure of my body to keep being a body, to keep being useful, to keep being good. I felt inhuman–our opposable thumbs, our ability to manipulate objects, use tools, affect the materiel of our environment, is a defining characteristic–what we get to play with in the animal kingdom instead of claws or razor teeth or spots or tails or exoskeletons. And I couldn’t even feed myself.
And I couldn’t work. All the stories I’d been working on froze in place, schedules rearranged around not knowing when I’d be functional again. But my mind wasn’t numb. My mind kept churning along, making things and planning things, but it had no fingers to make them happen, to make them real. I can say I felt impotent, but it doesn’t begin to cover it. So much of my pride, my emotional life, my sense of self, rests squarely in my work, my feeling that I am worth the air I displace, that my life has motion and a shape. And it was gone. I couldn’t even talk to most of my friends, who are so far flung that the tap tap of the keyboard is our speech and hugs and warm smiles. The world shrunk and shrunk and I couldn’t do anything about it. And the intense boredom of being forced to be passive ate me up inside. I could read or watch. I could not write or act.
I’ve been lucky, I’ve been cared for by those I love. No one is at their best when they’re helpless and in pain, and they deserve all the cake and cocoa for putting up with sick-Cat, which is the worst-Cat.
By the fact that I’m writing this, it’s probably clear that I’m better. Better, but not the same. I suspect never the same again, or at least not for a long time. The last few weeks have been a slow improvement. I can do more, though it hurts afterward. It’s better than doing nothing. I use creams and anti-inflammatories and ice packs. I’ve read like Cookie Monster, if he ate books–and I feel so full of those books and grateful for them. I soaked up unlimited reading time the same way I did during the Plate Glass Summer and it has been intensely good for me.
I got a SafeType keyboard, which looks like something out of Star Trek and has a learning curve like a sheer cliff. I tried, I really tried, but it made me feel like a stupid child, plunking away at keys at the fabulous speed of 4 words a minute. And as there’s no place to rest your arms, you end up needing some real endurance to hold your arms up for hours at a time. After two weeks of practice and pain, I got up to 24 before realizing that the cost in hopelessness wasn’t worth the benefits. To every day feel like this act which has come to define your world is impossible is an all-access pass to the pits of despair. I found it easier to learn the accordion. I’m writing this on my old keyboard, my wrists resting on a towel. I’ve ordered a different brand of won’t-break-you keyboard, hopefully it will be better. (And hey, if anyone’s in the market for a SafeType…)
But things have changed. I thought they would change back quickly, a couple of days of rest, no problem. Or maybe a couple of weeks. But it hasn’t yet. My world is ruled by a simple question, asked every morning the moment I wake up:
How bad is the pain today?
Not am I in pain? That answer is always yes. Every day. It’s only a matter of how bad. What can I do today? What will I suffer for tomorrow? I’ve never had to ask that question–and that’s privilege in a nutshell. Your privilege is comprised of the questions you’ve never had to ask. Which questions, how many, how often. Having gone through my life without chronic pain, the utter tyranny of this question presses damnably hard on my heart and my spirits. To all of my friends who’ve lived with pain for much longer (and with much worse) than I–I only understood intellectually. I get it now. I get how hard it is every day to do simple things. And I’ll tell you something–it’s nice to not get it. It’s nice to feel sympathy without a concrete idea of what is happening in the bodies of those you love because yours is fine.
This is the first day I have felt I could work, and I am trying. I have given myself two hours to write what I can, resting when I need to. I’ve noted when I had to stop writing this post because my thumbs had gone numb or the ache got to be too much. It is hard. To have a blog post be a physically punishing task. I have blogged for all of my adult life. And now I ration my strength for it. I have been saying for years that I need to slow down and figure out more sustainable work habits–well, my body has decided it’s tired of waiting for me to figure it out and holler as loud as it can.
So I am trying to think of my daily work not in terms of wordcount but in terms of time. Two hour segments. Not pushing so hard I feel like my eyes are bleeding. Tortoising it up–slow and steady. Anyone who’s met me knows how much that galls. But pain is a wonderful enforcer. You change or you suffer.
But this is the first day of me being, tentatively, back in the land of the living. Reviving this blog, which went rather dark last year for a whole host of other reasons. Getting through the backlog of emails. (Please be patient!) I’m at the outer limits of my ability to not speak–online, in my books, with the keys that are the core of my life. The Girl Without Hands got new ones, eventually. I hope, with all my jangled, pinched-off nerves and frenetic brain, that I will too.
Now, if you’ll excuse me, there’s an icepack with my name on it.