I’ve been thinking about writing all week.
The word “WRITE” is scrawled on sticky notes, in my paper planner, and in reminders on my phone that ping every few hours. I’ve asked friends and my partner to keep me accountable. I say out loud to myself “Today I am going to write.”
But when I finally crack my laptop open to commence, there’s just one problem…
I have a chronic illness.
And in this particular moment, it is screaming louder than my sticky notes and pathetic reminders.
My hands are quite literally shaking. The kind you get when you have too much caffeine, except I haven’t had more than my normal cup of coffee today, and that was at least 5 hours ago.
I’m suddenly soaked in sweat and have to start removing clothing. I switch my fan on but I can’t cool down fast enough. I feel faint, queezy. My bones feel tight against my skin. The light in my room is torturous and I shut my blinds as fast as my shaky hands will allow.
I close my laptop, shameful and disappointed. How can I write if I can’t even stand the sight of words on a screen?
I close my eyes and don’t wake up for 5 hours. My day has melted away like the setting sun. I’ve missed dinner and two calls from my boyfriend.
It’s days like these that make me doubtful that I will ever publish again; that I will ever be able to endure my own body long enough to put pen to page. I tell myself that the first book was a fluke. I was healthier then—less tired, less achy and shaky. I didn’t need blackout curtains then.
If hindsight is 20/20, looking into the future is groping around in the dark with no flashlight.
I wish I could see a few years ahead. At a book signing, a performance, maybe another TED talk. I wish I could see myself healthy and doing what I do best. And most of all, I just wish I could wake up without my joints feeling like cement.
Maybe there are some of you out there who will say, “Well, that’s just getting older!” But I’m not old. I’m not even 32 yet. Yet here I am, feeling twice my physical age and consistently being told I’m too young to feel the way I do.
I won’t get on a soapbox about it (today), but dang, it pisses me off!
What could be just as damaging is that I was raised in a society that told me if I didn’t push myself to absolute exhaustion, then I was doing it wrong.
I’ve seen this play out in micro and macro ways throughout my life—from going on back-to-back-to-back online dates so that I could find “the one” and not end up alone, to never taking a single sick day my first year as a high school teacher.
Of course, I feel shameful when I rest. That’s what society wants for me!
To say I’m exhausted just doesn’t quite hit the mark. A more accurate depiction might be getting hit by a bus going full-speed down a highway, something (I’m almost afraid to say) I’ve wished upon myself more than once so I could just have a single moment of peace in a hospital bed if I were to survive.
I know that’s dark. But you don’t need to worry about me because I have therapy in like an hour.
The point here being: late-stage Capitalism can suck a big one, but it’s also about time I learn how to rest no matter what is going on around or within me.
A lot of people assume because I’m a published author that I write every day, all day. I don’t know where the actual fuck this myth came from (Hollywood, perhaps?) but I can tell you it’s nothing more than that: a big fat myth!
Do you have any idea how much focus that requires? How much eye strength to stare at a screen all day and make up stories and characters and entire universes? Do you even understand the level of sciatica running through my ass at this very moment?!!
It would be great to get paid to do this all day, don’t get me wrong. But even if I did, I don’t think I would be able to. Simply because my body would crumple into a pile of dust that our robotic vacuum cleaner would have to come clean up during his daily rotation. His name is Lurch, by the way.
It’s taken me 10 years of writing to realize, but the rest is just as important as the writing. Dare I say even more so.
When I’m tired you might as well throw me in the bin because I’m useless. I can hardly form sentences, let alone string them together to make something meaningful. Words? What are those? I have aphasia, which is the inability to understand or express speech. Ever get a word/concept stuck on the tip of your tongue and can’t say it? Yeah, that shit happens to me like 10+ times a day!
How on brand of me to become a writer—a sorcerer of stories, a wielder of words.
I hardly feel like a sorcerer today, writing this from under my fuzzy blanket with a heating pad wedged under my ass. But hey, some days are like that. And I’m doing the best I know how to with the broken brain I’ve been given.
On the “bad brain days,” I have to remind myself how far I’ve come.
It wasn’t too long ago that I was taking naps on the dirty couch in the teacher’s lounge in between teaching classes. Classes filled with teenagers who either didn’t respect me or couldn’t be bothered to show up to my class in the first place.
That place and that world seem so distant now—only accessible in the dark recesses of my brain where I store all the past versions of myself.
And even though I’m not thrilled that my current version of self is tucked under the sheets in complete darkness, at least I know I never have to set foot in that windowless classroom ever again. At least the room I’m in has windows. And I can open them up and let the light in when I’m ready.
I will be honest. I’m not entirely sure where this piece is going today. I’ve been interrupted about 3 times since starting this post and I desperately want to finish it so I can go to bed atop my pile of unfolded laundry. I realize that’s not the momentous ending either of us hoped for today, but it’s the one we’re getting.
So I guess I’ll end with this. If you’re tired, chronically ill, or just plain ol’ human—I hope you take rest when you need it and know that you’re not any less of a writer for doing it.
<3 M
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