Living with CFIDS: Personal Stories
If you're reading this, chances are that you or someone close
to you has CFIDS. As such, I'm not going to delve into the clinical aspects of
the illness here: You're more familiar with them than you'd like to be.
Instead, I'm going to explore a question that's been whirring
in my head like a chainsaw: Who would I have become if I hadn't developed CFIDS
almost fourteen years ago?
August 17, 1991, my mom and I were at a jewelry show. I was
twenty-four years old, worked as a domestic violence victim advocate, wrote
freelance, walked six miles a day, and my roommates and I were throwing a party
later that night. Mom was a deputy prosecuting attorney at that time and we were
taking a much-needed break, looking at amber and burnished silver and
Here's the part of the story that I have to tell as if it
happened to someone else. In my mind's eye, I see myself from a distance, like a
character in a film.
"I feel dizzy," I say to Mom.
"Let's get you some food," she replies.
We go outside and get hotdogs and Diet Cokes from a vendor. We
sit for awhile, careful not to bask directly in the mid-afternoon sun. I feel
more stable, but not quite right. Still, I want to look at jewelry.
"Let's head back in," I say and toss our debris in the trash.
"I'm sure I'm fine."
Five weeks later I was in a wheelchair. Of course, nothing has
been the same. In the past fourteen years, I've had periods where I worked
full-time and I've had an episode where I was again wheelchair-bound. I've
written and directed and produced two plays, and I've had months where I've
walked with a cane or crutches and needed help with the simplest tasks. At no
point have I been symptom-free, however, even for a moment. That day at the
jewelry show was the last time, perhaps for the rest of my life, that I didn't
feel like I have a powerful flu.
I'm an optimist. (Sardonic, but an optimist.) Since becoming
ill, I've published dozens of articles and fallen in and out of love and had
great sex and dinner with friends and imbibed organic dark chocolate at matinees
and read countless books from the teetering stacks in my bedroom. I don't let
CFIDS define me. But everything is refracted through its prism and I hate this.
If I take on a deadline, how much cushion should I leave for when my fever
inevitably spikes and I can barely concentrate? If I need to use a cane that
evening, should I go on the date or cancel? If I sit up through the film, will I
still be able to drive home? And how I can expect someone I love to live with my
illness when I can barely stand to live with it myself?
So, who would I be today if I hadn't developed CFIDS? Would I
still take stairs two at time? Would I have moved to
? (This is the only one I can answer with the utmost
certainty: Yes.) Would I have completed my book? Would I take my health for
granted, as if it were gravity or the sun's burning? Conversely, would I have
learned to appreciate how finite life is? (What is illness, really, if not a
reminder of death?) Would I be as resilient as I am today? (When you have to
fight your body in order to stand or walk, transacting with editors is not that
big a deal.)
I'll never know the answers to these questions and perhaps, as
such, I should stop asking them. But there remains a part of me untouched by
CFIDS, and she wants some answers. For her, I'm grateful. Without her, I'm over.
She deserves some answers. With a treatment or cure, maybe she'll get them.
Dremousis wrote, directed, and produced the plays, "If I Wake Before I Die" and
"9:00 in the Afternoon". Her work appears in McSweeney's, The Believer,
BlackBook, Paper, MovieMaker, Poets and Writers, Paste, The Black Table,
Bookmarks, Kitchen Sink, Skirt, Cranky, and on NPR. Among others, she has
interviewed Augusten Burroughs, JT LeRoy, Sherman Alexie, Tim Blake Nelson,
Amanda Koster, Stacey Levine, and Alien Crime Syndicate's Nabil Ayers. She read
her McSweeney's piece, "An Open Letter to Keith Richards' Immune System" (visit
NPR in April and her short story, "A Young Irene Dunne, Maybe", at the
in May. Her interview with The Long Winters'
John Roderick will appear in The Believer in June and her cover story on Death
Cab for Cutie will appear in Paste in August. She is a winner of BlackBook's
Hemingway Short Story Contest.