Friday, September 14, 2012

Not Defined By Negative Space: My Thoughts on Chronic Fatigue Syndrome

I’m a writer, but I still can’t figure out a way to write about CFS that doesn’t sound like your grandmother’s boring list of complaints about her latest ailments. You either have to be funny (which I can occasionally manage in social settings when I’m feeling well enough to get out, but am rubbish at when I write), or you have to weave a story that draws the reader in.

The trouble with that last bit is the kinds of stories you can tell about CFS. You see, the thing is, sick people don’t get to actually do much of anything. There’s no natural building tension that arcs up to a climax. Sick people are all dénouement. We live in the evening after all the exciting things have happened. We can recall back—remember when I was 19 and running around the city? Remember our first date where we walked to the beach by Navy Pier and ate Subway sandwiches, and I was embarrassed about having ordered a meatball sub because they are so messy to eat and I wanted to impress you? Remember when we walked back to the college and you held my hand because it was cold, but then you never let go the whole twenty minute walk home?

But now I watch movies about people who decide to change their lives—they go back to college, break out of old patterns, take up dancing or biking or reinvigorate their love life. And I feel like those people are aliens. The longer I’m ill (and it’s been over a decade now), the more separated from normal life I feel. It’s a foreign land populated by foreign people. I read about these people doing their exotic things like walking their dogs or driving to pick up their children from soccer. I watch movies where people fall in love and kiss in the rain. I get out of the house once a week and my husband drives me around and I see people jogging on the beautiful path by the river. And I stare at them thinking: I cannot even fathom what life is like for you.
I don’t want to be one of those people who is defined by the things I’ve lost. I don’t want to be the piece of art where all the negative space tells the story. But then there are days like today, where I barely manage three hours of work from my couch, and the rest of the day I’m all but catatonic, laying down and closing my eyes to still the spinning vertigo and resting my exhausted limbs. Days where I just want to scream at the top of my lungs at how crappy it is that I can’t drive a car, or get out of the house, or cook a meal, or contribute to the housework at all, or even read a book.
But the kinds of stories I want to tell have to end on a hopeful note. Even the story of my own life. So instead I’ll try to focus on the fact that some meds have allowed me that three hours of work a day, that I’m getting through my copyedits and will be done by the due date, that I get to be a writer and have a wonderful career that I love with work I can do from my couch, that I have a beautiful son and an amazing husband. And I try to remind myself that no matter the bad crap, this life I have is very good.


  1. Wow, Heather. I've heard of CFS, there was a woman on the US Soccer team that developed it and went from playing full time to barely being able to tie her shoes. I've just never really heard a first person account of it before. I had no idea it could affect someone to that level. It's fascinating and frightening at once. Give yourself those moments to scream, because you need them. But I am sooo impressed that you're also able to focus on the positive. Thanks for sharing, I know it wasn't easy.

  2. Thanks Libby. Yeah, it's just this insane thing that came and parked itself in the middle of my life and there's nothing to do except try to find ways to have a life around it. But I'm glad to share awareness whenever I can, and thanks for stopping by.

  3. Have you read Still Alice? As an example of a novel that portrays a disease, it's first-rate. I think you could do the same. :)

  4. I have Fibromyalgia, and the symptoms of that and CFS are similar. I totally understand what you are going through. I am beyond exhausted all the time and constantly in pain. I don't work outside the home and I know that people see me as lazy. I think that is part of why I love reading so much - it doesn't take much energy, and I get to escape my life for a while :) Anyway, I haven't read Glitch yet, but it is definitely on my to-read list. I've heard great things about it - congrats on your success!

  5. Heather, you are a huge inspiration! I have CFS and want to be a published author one day. Thank you for writing about CFS even though it's horrible to try and explain and impossible to get anyone to understand what it's like (even the people who are there every day and see you struggling). I do understand what you're going through and it motivates me to keep writing, so thank you!!