At 5PM, I finally felt good enough to leave the apartment and go to Starbucks. It had taken all day, the pain had been a fog that not only clouded my brain put clogged the cogs of my functions. I had meant to lie down for twenty minutes, it turned into two hours. But that couldn’t stop the work. I have deadlines to hit, and if I want my career I can’t let it stop me. My body aches its way out the door, my muscles in my back feel rusted, by neck in a constant state of malfunction. I make it into the coffee shop, only hours and hours late, and get to work.
I’m James Wylder, I’m an author, an editor, and I live with daily chronic pain. Actually, let’s be clearer: I’m in pain every day, and have been for over ten years. Every few years I get a day where I’m not in pain, and it feels like I’ve had weights lifted from every part of my body, like my brain got a CPU boost. But those are rare treasures, and you can never predict them. When I was 18 I went to see a doctor about my pain and discovered that my neck had an issue, “You have the neck of an 80 year old man,” he said.
“Do you like roller coasters?” he asked.
I replied that I hadn’t been on one.
“That’s lucky, you shouldn’t ever go on one, if you do you could die or be paralyzed.”
A time later I ended up at a theme park with friends, and I felt angry. How could my body betray me like this? I did track and field and cross country! I was a young healthy dude! The doctor couldn’t be right, I had my whole life ahead of me. And in my overly cocky stupidity, I went and found the least intense roller coaster I could at the park. It was for little kids and their parents, and there wasn’t much of a line. I got on, and zoomed up and down, got off, stumbled to a park bench, and spent the next few hours lying down in agony. Eventually my friends came by, and I smiled (while in pain), and got on with my day.
In hindsight, this was emblematic of how I’d live every day of the next ten years. Throughout all of college, I smiled through the pain. Most people had no idea that while I did everything, going on walks, going on dates, running roleplaying sessions, eating meals, I was pushing back a dull pain in my head. I opened up about it a few times, but I quickly learned it was a mistake. When people knew how much pain I was in, they offered me fewer opportunities. I was passed over for things that I thought I’d deserved, and told in private that I had to be so grateful I didn’t get to do my dreams, because I was already dealing with so much. The poor cripple!
So I shut up about it.
And I stopped complaining.
I stopped being honest about it.
I was fine. I’m always fine.
After all, like we said in cross country, if it hurts, fake it till you make it.
Opening up about my pain is hard, because in so many ways it’s been a secret of my professional careers. I’ve constantly been scared of losing work because of it, because I have in fact lost work because of it. I’ve been scared that I would be unemployable because of it. But there does come a point that keeping closed in about things eats at you, and I’m secure enough in how much writing experience I have under my belt that I feel like I’ve proved that I can hit deadlines and produce quality work despite my body turning against me (for the record: editor on five books, writer of 12, contributor to many more). After all, writing has been something of a dream job anyways on two very distinct levels. On the one hand, I’ve dreamed of being a writer since I was a small child. On the other hand, it’s also the job I’ve been in that that allows me to be in the least amount of pain every day.
For a few years I was a teacher at Elkhart Community Schools, a school disctrict that really respected my work, and while not my chosen career, was a rewarding place to work. My time teaching English under Kerry Donoho as the department chair being a real highlight especially. Getting to teach young people, and be there for them at an important time was something I valued getting to do. At least according to many of my students and teachers I subbed for, I was pretty good at it too.
The biggest problem was that I was in pain every day of that job. I’m not saying that I’m above being in agony throughout the day—of course it’s just a fact of my life. I’m not above working a day job if I need to, or think that being a starving artist is romantic—its very much not. But I was simply not able to care for my body on a day to day basis the way I am doing full-time writing. I can do weird hours, or take my pain medication that makes me practically immobile. I can work from home. I can limit situations that put strain on my body in ways that cause me to be in more pain.
See, thing is that I took a lot of sick days as a substitute teacher. This wasn’t a bad thing—you aren’t penalized for it since you’re just getting paid for every day you go in, but I was often laid up at home just trying to manage the pain that was so great I couldn’t move.
But there was always a dream ahead: I worked hard after work and on weekends to build up my writing business. It was the light at the end of the tunnel: a way out of pain.
I wrote books. I self-published them, and took them on tour. I got publishing offers (they all fell through). I wrote more books. I toured. Touring was a wonderful experience, and I really hope to do more of it. But it was also a lot of pain. There are a lot of picture of me smiling and being really friendly at conventions when I feel like my head is exploding, like my neck is going to tear apart. I loved doing conventions, and I hope to go back to more, but I was often limited on funds and slept on people’s floor’s and couches as I traveled, driving straight to a place after teaching, my body never having the chance to recover during the weekend. But the pain was worth it—I built up a career. Built up a following. Wrote more. Traveled more. Got a live show I hosted in Illinois. Times were good.
But something had to give.
Last year, I had several big health crisises. Along with having an unrelated emergency procedure, my chronic pain began to flare up in big ways. I was in high levels of pain so frequent that Soon, it became clear that I’d need to tour a lot less. I cut down on my appearances, put my live show on hiatus, and focused on trying to do well in other ways. It was hard. But it had to be done.
I didn’t want to though. I still don’t want to. I want to travel. I want to be able to live the life I see other people around me living. I don’t want to shovel down pills when people aren’t looking to get through the day. I don’t want to lie in bed all day. I want to run like I used to—be free out there in the wilds and blaze through the paths in the woods. I want to be free. Because my body is a prison, and I don’t know who my jail-keeper is. But even if it’s a prison, I can still write.
So I write. And I live the best life I can. I live for my work, for the people who care about me and for me, and yes I am getting medical care and working to improve my body in the ways it can be improved. It cannot be cured. I cannot rub peppermint oil on my neck and fix it. But I can make it nicer, and I am.
Still, I fear the possibility that this nicer way of living will end for me. Thanks to my health crisises last year, that possibility hovers over me still. I have long since abandoned the hope I won’t be in any pain (and no, I don’t need your home remedies that won’t work. I’ve probably already tried them) but that doesn’t mean I need to like it, or aren’t bothered by the idea that I’ll have to be in more of it. If my body is a prison, then I still don’t want to get locked up in solitary.
But life goes on. I’ll still smile. Still have good times. Still have friends. If you’ve known me since 2008, you’ve known me as I am now. Nothing has changed except a confession: every thing I’ve done, good or bad. Every smile. Every book. Every favor. Every day out. It’s all the same me. I don’t need or want pity. You don’t need to say you’re sorry. I’ve been like this. It’s me. I’m still here. Literally nothing has changed. If I could do it then, I can still do it now. So don’t you dare baby me.
However, it is also time to admit that perhaps I didn’t start this path on an equal footing. When my pain and health last year nearly ruined me, that was something that most people around me simply weren't dealing with. And I need to accept that this is the body I’ll be living in, and stop pretending it will be anything other than that.
I don’t know what the future holds. But I’m James Wylder, I’m an internationally touring author, and I live with chronic pain. How ya doin?
Leave a Reply.
Poet, Playwright, Game Designer, Writer, Freelancer for hire.