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.

Copyedits for Override!

Got through 9 chapters (out of 29) on copyedits* for Override today!!! All I can say is thank goodness for vertigo meds, which calmed down the constant spinning to an acceptable level so I can at least get some work done.

As I do my read-through, I'm struck by what a strange thing it is to write a book like this--one that I've rewritten from scratch at least three times. I know the story so well that all the different permutations kind of overlap. Reading through it now, I was laughing - oh the story logic seems so simple now, but it was SUCH a struggle to figure it all out! Note to self: don't ever have someone who can see the future in my other books, it makes for some wicked plot knots. There's this one scene that I literally wrote more than ten times, and now it reads all smooth and simple. But when I read it, I see all the struggle that was behind it. I see all the failed plot-lines and mis-steps it took me to finally get here. Really, I hope that no book I write in the future is EVER this much struggle again. And yet, beyond all the difficulties, I think I (with the help of my amazing editor and some very helpful beta readers) have managed to produce a good book with some wicked twists that I think readers will really enjoy!

Strange world. I've learned SO much over the past two years. Stuff I hope I can integrate into future books, and lessons about life I will try my hardest never to forget. In short: Life is beautiful. Find good work you find satisfying. Hold tight to the ones you love. That is all.

* Copyedits are (theoretically) where you’re just fixing grammar mistakes, logic problems (like, wait, wasn’t she just sitting down, but now she’s walking around with no transition? or bigger world-building logic inconsistencies) and doing a last read-through to make sure everything sounds right and you aren’t repeating the same word three times in the same sentence.