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The Girl Without Hands: Writing, Carpal Tunnel, and Silence
c is for cat
catvalente

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.

[rest]

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.

[rest]

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…)

[rest]

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.

[rest]

Mirrored from cmv.com. Also appearing on @LJ and @DW. Read anywhere, comment anywhere.


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All the love and healing to you, dear. You're missed in books and online.

I also empathize. I was trapped at home with labyrinthitis and resulting mal de debarquement syndrome for nearly 5 months last year. I couldn't teach. I couldn't sew. I could barely type and read, I would be dizzy in just a few minutes of working. I couldn't even watch TV without spinning. I slept a lot.

It's so frustrating when you're faced with a disability that limits literally everything you do - everything you love. I imagine it's what being a ghost must be like.

I wish and hope for all the best for you and your healing. You're missed.

What a perfect image. Yes. I have felt like a ghost. Haunting my life, anchored only by my house and my family.

It's good to hear your voice again here in LJ-land.

I know a lot of how you feel (I, too, have arm mobility problems, though of a different nature and thankfully not to the degree that you've gone through). It's horrible. I hope you get all the support you need to keep keeping on.

I'm sure people have already bothered you about this -- but have you tried any sort of adaptive speech-to-text software? It would allow you write and use the computer without having to use your hands. The method has its drawbacks, of course, but it could be a good option. (Dragon Naturally Speaking is the best option, from what I've heard. I haven't tried it myself because grad students without monies, running Linux boxes, are not the best candidates for expensive commercial software.)

Edited at 2014-02-18 04:50 pm (UTC)

Ah. I did forget to mention that. Though it might work for blog posts, I have never, ever been able to dictate fiction. Writing is, unfortunately, kinetic for me. The flow between my brain and my hands, my fingers and my thoughts. Speech is a different part of the brain, a different skill, and it doesn't come out the same way.

I definitely understand! I don't have a huge disconnect between the two, but it's enough of one to be noticeable. (And as a linguist, oh yes, so on the "spoken and written language are not identical" boat.)

As someone who did lose her career due to illness, with no hope of returning, I can relate in parallel. The loss of identity is gaping and scary. It has been five years now for me, and I can say that it does get better. It is a grief process, and as such it is unique and time-consuming.
It is odd that I don't really know you, but I love you. Your writing means so much to me that I am tearing up just trying to find the words to convey that meaning.
You are in my thoughts and prayers.

Thank you so much--you are so very kind, even if we don't know each other in the world.

It's so good to see you back.

I'm so sorry you've been going through this.

I love you.

P.S. This is Shawna. I changed my Livejournal name from foxipher to sheistheweather.

I'm glad you're in recovery, however slowly. I'll keep you in my thoughts!

Love you. I have had severe tendonitis in my thumbs on and off for years. I know your pain.

We can always FaceTime if you get bored :)

I would not wish this on anyone; it's a club none of us want anyone else to join. I'm sorry this has happened/is happening to you.

Edited at 2014-02-18 06:45 pm (UTC)

I was diagnosed with ALS in 2012. Lou Gherig's disease - my body no longer works like it is supposed to, and won't ever again. That's been a bizarre learning curve, having to figure out how to live without being able to feel my feet, or if I do feel them, having them be exquisitely painful to the point of not being able to even get to the bathroom without drastic measures. It's been a fantastical journey of self-discovery - how strong am I today? How much will I be able to accomplish, if anything? So what did I do?

I became a distance walker. Yes, you read that right. Even without full feeling, I have completed 11 half marathons since January 2012, about to hit #12 this coming Sunday. My theory? It's gonna hurt anyway, and the reality is that I will be in a wheelchair sooner rather than later. So while I have the privilege of walking, I'm going to use that like it's my bitch. Just last year, I lost myself and faceplanted 200 yards from the end of the Portland (OR) marathon - but because I am who I am, I got up, wiped off the blood, and went to the finish line.

It's hard. So hard. My husband even left me last November because he couldn't deal. But it's my reality, and I no longer take for granted walking to the bathroom, or 13.1 miles, or being able to grasp or swallow or...

My, this has gotten rather long. At any rate, I wanted to share this with you, as it's a brilliant piece about chronic disease and how we cope. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Today, I have few spoons, but I am traveling across the country to do my next marathon at Disney World (dream come true!), so I'll use them all up with joy in my heart, knowing that I will be racing again, at least until I can race no more.

I adore you, I hope you come back to Portland (mine, not yours) soon, maybe we can have coffee? ;)

P.S. This is Jenna/Purplesmudge

Much love. Welcome to the club that no one wants to join. *wry grin*

I can tell you that you will eventually you will... perhaps not accept it, but reach an uneasy sort of peace with it. You'll find ways around the worst parts, and ways through the rest of it, and you'll go on. Not the same as before, no.

I will make an exception to my I HATE THE TELEPHONE for you, if you ever want to talk (I hate it a little less than I used to lately, anyway) and I'm in front of a computer most days for work; we could Facetime or Skype if you want.

I also have a number of tricks up my sleeve for managing pain, if you'd like to poke me for info on that sometime. I have a policy of not offering unsolicited advice because I know how incredibly exhausting that gets, but I am always willing to share what I know.

I am looking forward to seeing you when I can.

Ugh, that super sucks. I remember crying like a fool when I learned I was going to be on levothyroxine for the rest of my life, and for Christ's sake the only real imposition is taking a pill every morning. But I do empathize with the resentment at "...the failure of my body to keep being a body, to keep being useful.."

Anyway, I miss your posts but I'm glad you're taking care of yourself and that you have a good support system.

I use this when it gets really bad and my fingers on my left hand go numb or I can't do a shoulder roll. Most computer people I know can't even do the whole strech with it without working up to it.

http://www.wristwand.com/

Regular use has kept me carpel tunnel free for 15 years of 10+ hours a day on a computer.

Also keyboard commands are your friend, and you might try the pen that records your writing as text.



I had a relatively minor flare-up of carpal tunnel during my interminable time in grad school (one of the various ways that Consuela the Reluctant Dissertation was cruel to me) -- it really did put extra emphasis on all the things that fingers and hands do.

I'm sorry to hear the new keyboard didn't help, but hooray for reentering the world of writing. Heal up quickly!

While I don't know what you are going through, as an artist the thought of losing use of my hands is a fear of mine. I pray that your situation improves.

I hear ya. I've had bouts of tendonitis that left me unable to do much of anything with my hands. I remember writing my SAT essay sophomore year of high school with my left (non-dominant) hand, because only one finger was splinted, while my right had two. I wrote a little note at the end apologizing for my penmanship.

I'm sorry you're going through this. If you like, you can email me, diatryma, gmail, with your address and I will write to you. Your replies don't have to be anything special or anything at all. But it is a way to keep in touch with people afar and a way to make keeping in touch slowly into an art rather than a limitation.

Thank you; for writing this, and for being you.

Kiralee

So happy to see you back - and so sorry that you’ve been away for the reasons you have. Given that all interaction involves mostly type, there’s probably nothing I can do - but if there is, shout or whisper.

Ouch. Yes. Been there,luckily only one wrist, but trying to get a childproof lid off of the painkillers ...
Much sympathy.

I am so very sorry. I had a typing-related injury to one shoulder. It was not as dire as carpal tunnel in both wrists, but even that had a severe impact on daily activity, and I could only (only, ha, I bet you'd have been pleased to do this) write fiction in longhand for about six months. So I wasn't cut off from communication as you were, but dramatically slowed down, as if I'd decamped to the 19th century and could only view the 21st hazily from a distance. I know many writers do prefer longhand at some stage of the process, but I never looked back once I learned to type.

My best wishes for continued improvement.

P.

So glad to know what's been going on. <3 I love you. Thank you for using your precious energy for this.

Oh, Cat. I am so so sorry. As a chronic pain sufferer myself, this is something you never wish on *anyone*.

Anything else I would or could say is just not sufficient. *holds you in the Light*

Missed you! <3

*good thoughts*

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