A Day In The Life Of A Disabled Writer

I’m disabled.

You wouldn’t know it by looking at me, but my body is pretty much attacking me from the inside. My blood tests have revealed a severe inflammatory condition, and x-rays and MRIs have indicated early signs of spinal arthritis. I have been diagnosed with fibromyalgia syndrome, which is a lifelong condition under the same umbrella as multiple sclerosis and lupus. I am relatively lucky in that my FMS will not kill me…but there’s no promise that the cyclical depression won’t kill me instead.

I continue to write because I have nothing else to offer of myself. I couldn’t finish my degree, and I couldn’t return to the civil service job I was really good at. Instead, I live off of a small disability income (well under the poverty line, I might add) provided by the Ontario government. Sometimes I have to use the services of my local food bank. Conservatives act like those living on disability are just lazy people sucking up tax dollars, but I can assure everyone reading this that a person cannot feel lower than when they have to beg friends and strangers to feed them and lend them money. It’s a position of utter desperation and degradation. So fuck you, conservatives. Until you have lived like a disabled person lives every fucking day of their lives, you have no right to say a goddamn word. You have no right to judge. And, I’ll remind you–I PAID THOSE FUCKING TAXES TOO.

I write to keep myself going, and to keep myself sane. But there are some days, and some weeks, where I can’t write. I have severe chronic joint pain. Imagine the aches and pains you get when you have the flu. Now imagine dealing with those pains all day, every day. I cannot stand for longer than 10 minutes. I cannot walk without pain and stiffness. I cannot sit up without a pillow and/or an ice pack or heating pad, and even then I need to take breaks to move around every half hour. I am dizzy. I get migraines. I am exhausted all the time–and I’m talking “I have to go to sleep NOW” exhausted. My medication gives me severe side effects.

This is my life. This is my future. And I’m only 26.

When I prepare to write a review for my blog and/or Bitch Flicks, although the pieces are usually short, they often feel like a major university assignment because of the amount of effort it takes for me to finish them. I would write more often if I could. But sometimes, after finishing writing, I feel like I’m going to faint. If I push myself too hard, I can easily end up in the hospital.

First, I have to come up with a film or TV show I can babble feminist theory about. I fortunately have a knack for this sort of thing, but it’s harder than it looks. Back to the Future is my favourite film, but there is literally nothing feminist I can note about it besides pointing out a Bechdel Test fail. And I don’t exactly feel like condemning something that I love. The reality is that the vast majority of films and TV shows lack feminist themes/representation. And that’s a hard reality to write around, because I hate giving negative reviews.

I always do a rewatch of the film/TV show, and take notes, before I write about it. If you’ve ever wondered why I review so few TV series, it’s because they take so long to watch–even the short BBC ones. There is a good chance I will pass out while I’m watching a film. Imagine being in a university class and trying to take notes, and then falling asleep right in class. That’s what I have to struggle against. Every week.

Then I have to make sense of my notes and decide what direction I’m going to take in the blog post. Do I do a character analysis? Do I discuss representation of minorities? Do I praise the media? Do I condemn it? Do I write formally? Do I write satirically? Do I have anything to say about this film whatsoever?

Then I write. I almost always write the entire review in one sitting. I did that in university too. I find that if I take breaks while writing something my train of thought goes in completely different directions, and I like to try to keep my thoughts and tone consistent. But then I get the side effect of my body absolutely hating me for giving effort on anything, even mental effort. I have to nap or take a shower immediately after finishing a review. This is what FMS does to me. It attacks me for living.

I gave myself a little extra work by deciding to incorporate animated gifs into my reviews. They don’t really take too long–10 minutes per gif, on average. The real time sucker is when I add captions to the gif, because I have to edit every single frame and make sure the text is consistent. I could just stop doing them, but I actually have something unique to offer. For once. The gifs don’t exhaust me nearly as much as the writing does, which is nice, but I’m likely to make mistakes when I’m fighting off sleep.

Then I post the review, and hope people will read it. The majority of my reviews get ignored, especially if I review a film that is older and lacks a cult audience. It’s demoralizing and damaging to the ego. I should get used to it when something I write isn’t noticed. I still have no idea why or how some of my reviews became popular, but others didn’t. The Sailor Moon and Last Unicorn reviews continue to get thousands of hits on Bitch Flicks. The Addams Family review continues to get passed around on Tumblr. I love that some of the things I have written are successful. But when I have just busted my ass on something that nobody besides family and close friends bothered to read…it makes me not want to try anymore. I mentally beg to those readers, “This is not all I have written. Please don’t just move on. Read what else I have to offer. Or else I have nothing.”

And I think that reaction is the depression talking. I have so much trouble finding joy in things that I start to take the good things for granted. I have something I can give to the world, but sometimes no one wants it. Why continue to write? Why not continue to write? I could just say “I’m done, buh bye” and begin an existence of sleeping all day and listlessly consuming media. But that’s not enough for me. Even if no one reads my work…it’s something I was born to do. It’s the last thing that my broken body can give.

I wouldn’t wish my condition on my worst enemy. The thing I fear most is my depression. It may have been a cause of the FMS in the first place. But then living with FMS causes depression. On and on, around and around. I’m on a ton of medications. I’ve tried to reach out for professional help and gotten none whatsoever. The top Rheumatology doctors in Toronto can do nothing for me. I’m scared. I’m scared that this pain is my life. That I will be too tired, achy, and poor forever. I’m angry. I curse whatever fates decided to strike me with this condition, because I have already suffered more than enough. I’m ashamed. Because mental illness is still so stigmatized. Because FMS is still poorly understood, and some doctors even believe it’s psychosomatic. Look at my blood and MRI tests and then tell me it’s all in my head, assholes.

So if I miss a week when I write a blog post, please forgive me. I don’t do it on purpose, because, despite it all, I still love to write. There are so many thoughts in my head, I have to put them down somewhere. I’ll do the best that I can. There is little hope for me, but at least my mind still works and my fingers can still type. I’ll work myself to exhaustion just so I can get some thoughts out there.

All I ask is that you read them.