The Path with the Fork in the Road- Writing and Chronic Illness
Updated: Nov 4, 2019
It's seven-thirty in the morning where I'm at right now--the sky's a little bleak as winter crawls toward the swampy tropics of Central Florida. Yesterday was 'sweater-weather' and I still ventured out in shorts because the soft blanket of humid air--even 80 miles from the nearest beach--kept the chill at bay. I'm lying here in this makeshift nest I created about six days after we moved into this house.
It's my over-stuffed chair which matches my sofa and love-seat, shoved in the corner of the bedroom. It presses against the side of my bed where my feet hang over so in the early mornings when normal spouses are having a cuddle, mine can wrap his hand around my ankle and hold it. It's the only acceptable form of touch my body can deal with on mornings like these--on weeks like these--where it feels like I have a tiny gremlin living under my skin, and it's slowly tearing me to pieces with its little claws. I have a comforter, a weighted blanket, and four pillows and sometimes it's easier to pretend I'm a spoiled princess than what I really am-- never, ever well.
I'm sick today. Which is a bit of a laugh and a bit of an understatement because in reality, I'm sick every day. I'm a writer with chronic illness-- like a badge or something I should be wearing. I sat at my laptop, not at GRL (half because I didn't know it existed until it was too late, and half because there was no way I was travelling that far after a long move), watching the photos and wondering how on earth anyone had that much energy to do any of that. On a good day I'd probably have managed a couple things. A meet and greet, maybe a lunch. That's assuming I could over-come the communication anxiety which grips me by the throat every time I try to socalise with people in a group setting. But that's a whole separate post. A whole separate therapy session (haha- except I'm not really joking).
I'm a writer with chronic illness--more than one, and they're a wild ride, let me tell you.
One of them is slowly eating away at the hearing I have left, which frankly that bit doesn't bother me about it. It's more the drop--the moments that my equilibrium just stops existing and I fall. I get hurt a lot that way. There's a reason our new house doesn't have stairs, and it's not just my husband's bad knees. I've spent hours in bed, fighting off nausea, unable to move because the world looks like someone threw it on a tilt-a-whirl, turned it up to medium setting, and then walked away. Today, that one isn't bothering me so much. I'm so used to the strange roaring noises inside my head, and the high pitched ringing, it's almost like a strange, robotic symphony these days. It's almost comforting.
One of them is why my doctor told me, "Well, the good news is, you have a back-up kidney." The stones are constant--about a dozen per month. When I tell people, "Oh, I'm having a kidney stone right now," they make that face--yeah, you know that face. Or they quote Friends episode at me, "Kidney stoooooone," (I had to nearly threaten to leave my spouse if he didn't stop that one). But in reality, I don't notice those much anymore.
One of them-- my best friend, the ever-present, life-changing, constant companion, is why I'm lying in my nest today. It's why my body feels like it was thrown into a wood-chipper. It's a little bit why I relate to so many of my characters who suffer from that disconnect and frustration with what their bodies can and cannot do. This illness, which crept in like a tiny saboteur with sharp knives and a clever plan. I was sick for weeks before anyone had any idea why. This illness barged in without knocking, sat on my sofa, and said, "How'd you like to change everything about who you thought you were as a person?"
I was active once. I was a gym-going, yoga-doing, Zumba-dancing, hike-loving nerd who had fresh fruit and vegetables with every meal. Who mostly avoided dairy and beef--but would suffer cheese belly for a good wedge of brie or buffalo burger wrapped in swiss. That all changed over a single weekend, when I spent seventy-two hours in bed unable to keep anything down, bleeding in places I shouldn't be, thinking maybe I'd contracted some obscure virus that was truly going to kill me.
It didn't kill me. Instead, it turned my body into this thing I still don't recognise. It turned my life into this constant cycle of just getting by, and making sure I have enough spoons to shower, and make sure my kids have done their homework, and sometimes cook dinner. It's a triumph when I have the energy and pain-tolerance to fold a load of laundry, to to wipe down a bathroom sink, to take the dogs for a walk down the street and back. Sometimes I just say fuck-it, and I go shopping, or head to the beach, or spend two hours roaming the streets of one of the oldest cities in this country even if I know I'm going to pay for it because while I'm sick from this illness, I'm also sick of feeling like my life no longer belongs to me.
Some months ago, I was looking at working in Crete for academic reasons. There was a position opening up for research at the Minoan ruins, working with the archaeologist team there. I applied, because that was the dream. Putting my hands in ancient dirt, staring for hours at art, and structure, and bones that existed long before the conception of my cultural God. It was an opportunity I had that I didn't think would come around, because I gave up this particular dream eighteen years ago when an unexpected pregnancy and relationship complication decided for me that I wasn't going to be some anthropologist studying my passion at the source. And here it was, staring me in the face, mocking because I applied, but I wouldn't be able to say yes.
The week I sent in the paperwork, I was bed-ridden. I couldn't eat more than simple, gluten-free carbs, I couldn't walk ten steps from my bed. I was where I am right now, at a fork in the road-- one side leading to recovery, the other side leading to hospital, and procedures, and treatments that'll make me feel worse.
I rarely make a choice for myself. Usually I just sit at that fork in the road and wait for whatever's going to come along to give me a great shove in one direction, then I stumble along reluctantly until I reach the next fork. It's the boulder to my Sisyphus, this never ending path, and I'm not sure which of the gods I pissed off (probably Zeus, he's such a dick) but lately I've been trying to accept the fact that there is no end. I have no light at the end of the tunnel. There's not a cure for the things I have.
I will always have vertigo-- I will always be going deaf. My right kidney will probably stop working one day, and if I'm lucky my left will stay strong enough to pick up the slack. I will always be tired, I will never be able to eat food without spending twenty minutes scouring the ingredients, and will always a crap-shoot on whether or not the food will hurt me anyway. I won't ever be a runner again, I'll never work on Crete, I'll never be able to stay away from home for longer than a handful of hours.
I can write, though. And this morning, as the sun is slowly creeping through a fog which will probably last most of the day, I can say those four words- "I can write, though," have probably saved my life--or at least, saved my sanity. I spent most of yesterday sleeping, but when I was awake, I was surrounded online by people who enjoy the things I've pulled out of my brain and put into words. I worked on re-writes and edits. I had a long chat with my editor about how much our bodies betray us simply by aging, not taking into account all the other things we have to deal with. I spent half an hour brain-storming new ideas, and creating new characters that--ill or not--I'll bring to life on the page.
Because in spite of the illnesses--in spite of those things robbing me of being the person I had always been--I can do that. I can pour all my joy, and anger, and frustration, and misery into those words. I can give them happy endings and journeys I'll never be able to take, and that's okay.
Sometimes I disappear from social media for hours--for days--for a week. But I'm still writing. It's a small comfort I can take on days like this when I just don't want to exist in my body. When well-wishes and platitudes are more exhausting than being sick because along with the illness, I suffer from a guilt where I feel like my story, my life, my existence, is a burden. It's not, I know that. But my logic brain is quiet sometimes, and hard to hear over how deaf one of these illnesses has made me.
But I'm still writing.