Writing While Chronically Ill

Posted by Kerry Freeman

Twenty years ago, I was diagnosed with Crohn’s disease, a severe, incurable disease of the digestive system. I’ve taken numerous medications and lost count of the number of times I’ve been hospitalized. I’ve had six surgeries, which have resulted in losing a good bit of my bowel. My latest surgery was in February 2011. I missed two months of work and lost another foot of small bowel. It will probably not be my last surgery.

I made a choice early on that I wasn’t going to let Crohn’s win. The bastard fights dirty, let me tell you, but it has not gotten the upper hand. My last bad bout, which began in the spring of 2010 and ended right before I returned to work after my surgery in 2011, almost did me in, but I’m still hanging in there, still giving Crohn’s the double middle finger every chance I get.

To survive without losing my mind, I’ve had to get up every morning and put Crohn’s out of my mind. Sure, it’s there, and it’s hard not to remember it when I look at the road map of scars my abdomen has become. But I can’t worry about it every day. I can’t obsess over every little ache and pain without going batshit crazy. I’ve got to go through life as if I’ll never get sick again and deal with it when it happens.

Usually this works pretty well. My day job is as a web developer on a large team. While I’ve got projects I’m responsible for, things are handled when I’m on medical leave. I know my coworkers will make sure our customers are taken care of.

My first story was sold just before my surgery last year. The publisher rushed the edits to me so I could make sure everything was done before I went into the hospital. After my recovery, I sold my first book, which I’d written for NaNo the year before. By the time we worked on edits, I was feeling great.

Remember that bag of medication up there? I have Remicade infusions every seven weeks. It is the only medication that works for me, and it’s crucial that I have my infusions on time. However, the medication suppresses my immune system. Sometimes when I get a sniffle, it turns into a raging sinus infection overnight. Sometimes a raging sinus infection spreads to my chest and gives me raging bronchitis. It doesn’t help that it also means that the mono I got in July 2010 has resulted in a chronic Epstein-Barr infection.

My new book was contracted based on a proposal, and I didn’t have it finished when the proposal was accepted. No problem, though. I had plenty of time before the full manuscript was due to my editor.

Yeah, no problem. No problem until I got a sniffle that turned into a week at home on all kinds of antibiotics and decongestants. I wrote every day, but my word counts were hampered by the fact that I’d pretty much pass out after a couple of hundred words.

The attitude that had served me well through my illness and my day job bit me in the ass when it came to my writing. Pretending I’d never get sick meant I didn’t bank tons of words when I felt well for days when I didn’t. And the days I didn’t feel well really fucked up my schedule. My beta reader (hi Trinity *waves*) and my editor (hi Jules *waves*) were both very understanding, but I hated it.

My lesson learned: write as much as I can on the good days so I don’t have to beat myself up on the bad ones.

Another lesson: Don’t let the nurse stick your wrist if you want to get any work done

Tags: chronic illness, Crohn's disease, Crohn’s disease sucks, infusion, Remicade, writing