Betrayal from Within

I recently submitted a pitch to a website that was asking for essays about being a disabled writer. Being that I’m going blind, I thought it was a decent fit. The response was your typical polite rejection – fairly toothless, the kind of rejection that says “We don’t really care but thanks anyway” in the nicest way possible – but one of the things that really hit me in the gut was when they said “It’s an interesting idea and you should write it anyway.”

Like this was fun for me.

The only reason I had even bothered to submit the pitch was that I need new publication credits. That was it. I’m in my 40’s and I’m going blind, I need career traction now. That’s the fact, and I’m not going to sugar coat it or pretend otherwise. I have to be mercenary about this. No one else is going to do it for me.

But I decided after tweeting some petulant shit that I would, in fact, write the essay anyway. That there was no reason not to, and a few good reasons (like the preservation of what little sanity I have left) to do it. So here goes. Here’s an essay about what it is like to be a writer whose eyes are slowly deteriorating.

The first thing is that everything is born out of panic now.

Every time I write something, it could be the last thing I ever write. I have no idea if and when my eyes will decide they no longer want to work at all. My right eye is already too far gone to write or read with. I’m using it now just to see if I can do it and this entire sentence will be preserved in whatever form it ends up in. This is purely muscle memory of the kyeboard.

I’m actually proud that I managed to do that with only one typo.

So there’s that overwhelming sense of panic. In some ways, the panic is helpful. Before the eyes started getting bad, I wrote my first book back in 2002/3. You’ll notice I didn’t publish another for a decade, and my first novel didn’t come out until 2016. That was due to many factors including a crippling case of depression that hit me and stayed with me right up until just before the diagnosis. I was already aware something was wrong, of course. It was impossible to pretend things weren’t deteriorating when I couldn’t even tank certain fights in World of Warcraft anymore due to an utter lack of vision on my right side. That sense of panic got me to do Nanowrimo for the first time ever, and led to me finishing Nameless in December of 2015. It is very much a book rooted in that sense of terror as my body became incapable of doing the thing I most rely upon it to do.

Suddenly there was no more time for depression. I still feel it, and keenly – I go into petulant rages, I sulk, I weep and thrash around at the unfairness of all of it – but I can’t afford to waste any more time. I already wasted too much. The year and a half since my diagnosis has probably been my most productive ever, in terms of pure writing. I published both Heartless and Faceless in that time, and I’m proud of both books.

But the panic is still there. And worse, there’s more than just panic. I work freelance for Blizzard Watch, and they’ve been pretty damn good about accommodating me and my eye issues, but the fact remains that I have to write posts for that job in addition to working on my own writing. And in either case, writing hurts now. My eyes do not like being exposed to light. I can’t leave my house without a pair of sunglasses on now if the sun is out. Sometimes I even need them when it’s cloudy because the glare from the sun through the clouds is too much for me. Stabbing, icepick pain in one or both eyes is a common occurrence for me. In order to use a word processor of any kind I need the screen to be black, with as little white as possible, or the pain increases. Even with a black screen the strain invariably gets too much in about an hour.

I want you to imagine writing a 160k word novel in one hour increments. As in, you can write for an hour or two and then if you don’t stop the pain is so bad you start crying and can’t stop. Whether it’s your novels, posts for your work, whatever it is I end up spending most of my day crying. My wife (who is amazingly helpful and supportive) often asks me what is wrong and I’m simply worn out from having to try and explain it, because it’s just always here. My eyes always hurt, now. Always.

I get eye injections on a fairly regular basis. Every time I do, I post pictures to twitter. People invariably ask me how I can take that. The truth is, it’s no worse than my every day – my eyes always hurt. The injections are uncomfortable and they ratchet up my panic attacks to whole new levels, imagining that this is the time the doctor blinds me – but they don’t actually hurt any worse than just being awake for a few hours does.

So that’s my life now. A constant stream of panic that motivates me to do the thing I once loved wholeheartedly and unreservedly but couldn’t fight my way past depression to do, which means I get to experience it again, but with a constant drumbeat of terror that this is the last time I ever do it and also in continuous, mounting physical pain that only gets worse and worse until I go hide in the dark. And every time I do go hide in the dark my brain starts telling me that when I turn on the light again I won’t be able to see it.

I don’t know how this affects the writing. If my writing has changed because of it, I can’t tell. I’m not a good critic of my own work. I was working on a book with my friend Pete Milan before all this started, and it’s one I dearly hope we get finished and published somewhere, because it was supposed to be the book that brought writing back for me… and it wasn’t born out of panic over my eyes going bad. It was a celebration of stuff I’d loved as a kid and in college, and I love that book in a way I can’t say I love the Nameless books. I do love them, but differently. They’re the books born out of my fear and my anger over all this.

Because that’s what I feel. I’m not brave. I’m in fact constantly afraid. I’m not strong. I’m in fact constantly thrashing about in rage that my eyes are slowly breaking down and my ability to do the only thing I’ve ever been good at is on a timer and I can’t even see the numbers. Some day I’ll wake up and I’ll be done writing, physically incapable of it. That drives me now. That drives everything I do. That’s who I am now.

So here is the essay. It’s probably not as good as it would have been if I knew it was going to be published somewhere. Knowing it’s just here on my blog means it’s more just me freaking out, and I apologize for that. But it’s what my day to day is now – resenting myself, fearing the future, and tapping these keys as fast as I can hoping I can hold out long enough to make someone take notice. That I can sell enough books to take care of my family once I can’t write anymore.

I’m very much hoping that day is years away.

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