The Compensations and Decompensations of (Unpaid) Writing

I've worked on the beginnings of so many posts for this blog. There are too many topics I want to delve into about being a writer who has disabilities. I have a catalog in my head of all the things writers "must" do to be real writers, which I cannot do:

• Read voraciously. (I have a print disability.)
• Write a certain number of words or pages every day. I don't even write every day. (I don't do anything every day, except breathe and make it to the next day.)
• Finish what you start. (That I finish any of the writing I start is because I have learned how to blog by lowering my standards steadily and repeatedly, until my blog has become something I could never have imagined in the beginning.)
• Attend writing conferences, workshops, or classes; network and meet other writers. (Maybe if classes and conferences could be held in my bedroom, it would be a start.)

This list is a puny beginning of how disability affects my writing. There are so many other posts I've started where I haven't gone further than a concept and a couple of sentences: How brain injury affects my word choices and the styles of writing I pursue  (such as flash and slipstream). How I manage, physically, to write, when I'm immobile and exhausted. Why I have a thesaurus in my bed. Why I publish erotica when, for most of the last five years, I've had no sexual ability or interest. The effects of mundane living and a sluggish mind on the ability to grok metaphor and make poetic leaps.

It's  such a struggle to introduce myself, which is to say, to introduce my life with disability, to a reader, an audience, a list-serv, etc. It seems to take a lot of effort, a lot of words, a lot of metaphor and explanation, to convey how small my life is. The topic of limitedness is too big.

Now, having written this, having gotten past my usual stall-out of a two-sentence start with a couple of links to buttress my point, the fear has its arms around my neck, hanging on me like a cape. The shames have flown in as a flock, landed on me, and started pecking. The jury is seated and taking these notes: "She is reifying every stereotype of disability. She is fitting herself into the tropes of the Poster Child and the SuperCrip. Those of us who are new to her are bored senseless. We don't want to hear her whining. We came here for entertainment and to learn something new that we can use. Those who already know her are even more bored. We've heard this all before. None of us goes to a blog for a pity party."

Except, Disability-Shaming Greek Chorus of My Mind, this is not a pity party. It's a reality excavation. The problem is that in this culture, a frank discussion of living with disability is filtered through the pity lens. The problem is that it's hard for me to talk about writing without talking about how much pain it causes, how much harm it does, even as it nourishes me and makes me feel more alive than anything else does. I suppose it was inevitable that an adrenaline junkie who is unable to engage in any form of physical exertion would find my thrills by leaping off mental mountains, and keep crashing to earth after.

Here's the issue that most people find very hard to understand: Writing makes me sick. It literally hurts me. It can be excruciating. I am trying to make a career of it, but I keep ending up writing things that don't pay. And I love it. In fact, the harder I work, the more excited I am about what I write, the harder I crash after. Which prevents me from writing again until I have recovered from that crash. Which makes it damn hard to have continuity in my work.

Today is a great example. Last month, I found out about the 5MinuteFiction challenge at Write Me! Every Tuesday at 1:30 PM, Leah Petersen posts a writing prompt on her blog. Writers have until 1:45 (15 minutes) to write a story that follows the prompt and post it as a comment to her blog. I was the winner the first week I tried it, and I've been a finalist the second, third, and fourth times. (The last of which is today. So, if you haven't read the final five yet, please read and vote!)

There are several aspects of the challenge that suit me. It's time limited. I only have to work for fifteen minutes, and then I'm done. No revising, no submission process, no carrying a long plot or argument through over several pages. The fact that it's scheduled at a regular interval helps because I can plan ahead and try to rest the day before.

Many of these factors also make it problematic. Doing anything on a deadline or in a hurry is a huge struggle for me. I never know how functional I'll be from one day (or moment) to the next. The longer the piece, and the shorter the deadline, the more unlikely I am not to meet it. This is not just because of physical functionality that gets in the way -- exhaustion or pain that makes typing (and everything else) hard or impossible -- but cognitive issues, such as word-retrieval problems. Normally, I use a lot of writing time trying to think of fairly basic words.

It's not so much what happens while I'm writing, though, as what happens after. One of my illnesses, CFIDS/ME is characterized by "post-exertional malaise," which means that within 24 hours of exerting, you get much sicker. This can last for days, weeks, months, years, or forever. And with CFIDS/ME, the level at which "strenuous" is marked is much, much lower than anyone without this disease, or a very similar one, can imagine. It is so low that activities that you never thought of as activities, that you never thought involved any exertion, are utterly exhausting: speaking, listening, having a facial expression, breathing.

Participating in 5MinuteFiction is incredibly demanding because it involves physical exertion (typing -- and typing fast -- and sitting up enough to see my computer screen, and not taking any breaks to rest my body or mind during those fifteen minutes) and tremendous mental exertion -- thinking up plots, rejecting plot ideas that I think others will use, getting into a character's head, choosing my words, trying to use correct grammar and punctuation and spelling, and doing it all as fast as I can.

It's this last bit, the "fast" part, that really does me in. Theories of CFIDS/ME all involve adrenal insufficiency and adrenal burnout. Any time I experience a rush of emotion, be it anger, joy, or sorrow, I will feel it in my body later. And if I use any muscles while going through those emotions -- if my muscles clench in anger or tighten during stress (whether good or bad), and if, God forbid, I cry -- later, those muscles and their neighboring bones and joints will be painful, inflamed, and possibly immobilizing. Crying and laughing hard not only use a lot of muscles, they also often trigger migraines.

Today was the worst payback from any of the Tuesday writing challenges so far. This is partly because yesterday was not a restful day, so I was starting out with a major energy debt. And it's partly because I'm using a new computer which doesn't allow me to lie flat. My new computer is much taller than my old computer, so even though I'm in bed and I have a support pillow, I have to be propped up, semi-sitting, to a certain extent. This means I'm using more muscles in my entire body, especially my abdomen, which is particularly susceptible to problems from overuse.

I used as many cushions as I could, but but by the time the fifteen minutes were up, my hands and feet were tremoring, and I had trouble controlling them. Despite having taken pain medication, my entire body ached so much I couldn't move some parts, and my legs and feet, in particular, were burning. I'd also lost the ability to speak, which is a symptom I developed after getting infected with Lyme disease and babesia in 2007. It used to be full-time. Now it's just occasional, when I have a really "bad day." It's partly neurological -- apraxia of the vocal cords -- but it seems to be made worse by abdominal muscle stress.

This is what fifteen minutes of creative writing can do to me. Since 1:30, I've been out of bed once, to pee, which required the use of my powerchair and service dog. I haven't been able to brush my teeth, flush my PICC line, give myself my shots, train my dog (who is quite grouchy about it!), talk (except for limited sign language), or much of anything else -- except write this blog. Writing this blog is utterly foolish! I am absolutely writing checks my body can't cash, but I get so tired of waiting for the next day, the next day, the next day to write what I'm thinking. I was excited by what I wrote today, because I liked it better than what I wrote the last couple of weeks, and I am tired of having the same post on this blog, week after week. So, when the pain meds kicked in, and with my PCA assisting me, and having figured out how to lie flat and type, I have been spending the rest of the day writing this post.

Because, as much as writing hurts me, it is also absolutely necessary for my survival. When I first became ill, I decided that my life could and would still be worthwhile with disability, and I put writing at the center of that creation of meaning. Later, when I became much sicker and lost the ability to speak and move, when I was in agonizing pain all the time, I told my best friend that I had to write. That my life had no meaning without writing. I was very angry when I was telling her this, because I could not write, then. I was physically and cognitively unable. I had lost interest in writing; I had no creative thoughts; I didn't know who I was without that. My most important goal was to get well enough to write again.

She thought my priorities were unbalanced. She flat-out told me that my strong feeling that writing was essential to who I was "made no sense." She was angry. She told me I should not feel the way I did. Looking back, I think she must have felt hurt that I didn't say my relationships with my friends were what was most important and what gave my life the most meaning. I know that that was true for her, because we'd discussed it. That was how she found meaning in her life. I'm sure that disagreement contributed to her decision not to be my friend anymore. I regret a lot of what transpired between us, but I don't regret saying that writing gives my life meaning, because that is true.

This might be easier for non-writers to understand if I was an investigative journalist, bringing to light great injustices. Or if I was a deeply spiritual person, writing novels that uplifted the soul. Or if I wrote poetry about the transcendent beauty of nature, and how a wild bird is like love.

But you'll just have to take my word for it that telling the story of a man who falls in love with an egg in less than 200 words, or describing my service-dog-in-training pulling my powerchair over on top of me, or writing a poem about what steps are involved in me getting out of bed is what makes my world go round. When I am lying in utter stillness in the minutes or hours or days after writing one of these pieces, unable to talk on the phone or type an email or train my dog, I can feel a sense of peace and joy at what I lived in those moments of writing. I know that all of that -- that unnameable force, call it juice, call it creativity, call it other people living in your mind -- is still in me, somewhere. Those times allow me to relax into the pain and exhaustion and just be with it, which is a much better way to live than to fight against it. I can be happy. In those few moments, I can even feel fulfilled.

I think that's why it was so important to me to write this blog today, in the wake of that utterly draining little piece of flash. Because even though it's fiction, and I did not grow up with a disability, and I did not attend a hospital school, I have been living my own Rapunzel story for sixteen years, and I just know people out there do want to read it, will want to read it, if it is compelling enough. I have to find a way to tell it, because if I don't, who will? There's the meaning, for me. And I guess if my inconsequential writing reaches someone -- or even if it doesn't, because it's already reached me -- that's what "makes sense."