below is a personal essay I wrote in 2021 around the time of my 19th birthday. It’s the first piece of my writing to center on my chronic illness and marks a turning point in my career when my writing took on a more representational advocacy role. Please keep in mind it is still 4 years old and, like everything on this site, as imperfect as its author. That being said, happy reading!
The Battle for Tonight
I lie in bed. Again. It’s the only place I feel even remotely comfortable. In bed. Propped up against my favourite pillow, quilted lovingly by my mom, the seams splitting from years of overuse. I could stitch it back together. I have the skill. I know how to sew a mattress stitch. It used to be my specialty. That’s so incredibly low down my list of priorities though. Not to mention the eye spasms I’d undoubtedly get from that kind of visual precision. There are so many things I don’t do anymore. Like make friends.
My new roommate is right across the house in her bedroom. Probably bored, wishing I’d come hang out. Me and Marco. She really is perfect. Compassionate, friendly, non-judgmental, empathetic and she even loves my quirky rescue dog. I want to get up walk across the house to her room. I want to knock on her door and ask if she wants to watch the Blacklist. I know she’d say yes. Did I mention she loves my favourite show? I want to be her friend.
Safe in my bed, my favourite band on shuffle, my icepack on the back of my head, numbing the soreness from the excruciating injections I got yesterday to try and stop my migraines. It’s like the two pains are competing with each other. The migraine argues that my body is its domain. It has been with me for years, for longer than my body has looked remotely the way it does now. For longer than I’ve lived in my house, for longer than I’ve had my dog, for longer than I’ve known my best friend. It was with me all through high school and what little college it allowed me to attend. It is familiar. And it is as much a part of me as the hair it weaponizes against me in its battle with anything and everything else for my attention and control of my life. The new soreness at the back of my head bites back. “Just let me hurt a little more” it croons, like some twisted lullaby. “I know it’s bad right now but give me control and I’ll drive the other one out.” I don’t know if I believe it or not. I must to some degree; because yesterday, when I cried out in pain as my doctor forced the burning, searing, electrocuting medicine into my nerves, I sat still and let her. I didn’t change my mind. I sat still like a good patient. Like a “trooper” to use her word, while she finished the points in the back of my head and moved onto the front and sides. I closed my eyes as, to judge only from sensation, she drove an awl into the upper corners of my eye sockets. I cried, I bawled, but I held still and I let her do it.
And so now the two pains fight each other, using my body as their battlefield, my nerves as their infantry. And laying alone in bed, I feel I can almost stand it. Obviously I can stand it. I’m still here. Can you imagine if I couldn’t? What that would actually mean? I can only assume that people who can’t stand chronic pain die. But pain itself never directly kills people. It’s not like there’s a limit to the amount of times your nerves fire off and then they die. I wish that was the case. Because I’d rather feel nothing at all than feel this. As I lay in bed I fantasize about Occipital Nerve Stimulators. They’re these devices that are surgically implanted in the backs of the heads of people with chronic intractable headache. People like me. They sort of look like the kinds of devices evil aliens implant in their unwitting human subjects in scifi. Like in that one episode of Voyager. It seems so easy. I wouldn’t have to do anything. I would go to sleep and when I woke up I’d have a few incisions, a pacemaker in my chest, wires running under my skin, and 16 electrodes to shock my nerves into submission whenever they start sending pain signals. But I’ll probably never get one. The FDA has barely approved them as a migraine treatment and It’s unclear whether they actually work or not.
But this is what I dream about as I lay in bed listening to the shins, tears running down my cheeks, my dog snoring at the foot of my bed. I feel lonely. I don’t know how much time passes but I can feel that the tears have dried on my cheeks. I see it in my mind’s eye: I’ll get up, put on my soft grey dress and some underwear. I’ll open my door, walk out into the living room. I’ll cross to the chest freezer, replace my ice pack in the wire basket and get a slightly colder one. I’ll microwave my tea and coffee and with my drinks and my icepack I’ll be able to sit with her and watch tv. Outside my room. Outside my bed. My thoughts are too dark when I’m alone sometimes. Easily solved, I just won’t be alone. Simple.
I get up. The absence of my ice pack isn’t immediately felt and I walk through to the back of my closet where the dress I want is hanging. I haven’t worn it for months but it’s what I want right now. I slip it over my head, the needles that are my hair follicles pricking everywhere the neck of the dress brushes them on its way down. I walk across my room to the bathroom cabinets, still feeling somewhat functional. I deliberate which underwear I should put on. I’m wearing a dress; which ones will look the least conspicuous if my skirt rides up? I reject the hot pink ones, reaching past them into the dark recesses of the cupboard. I could turn on a light. I won’t. The next pair is blue with white polka dots. At this moment I’ve been without my ice pack for over a minute and the injection sites have finally noticed the absence. I put on the hot pink underwear as quickly and fluidly as I can, wavering as always when I have to balance on one foot.
I quickly cross to the bed and retrieve the old ice pack. I also take the thin towel it was wrapped in. I’ll bring it with me so I can use the new icepack in my roommate’s room. I leave my room, brushing aside the heavy blanket that protects the doorway from the sunlight of the rest of the house during the day. I stumble over to the chest freezer, still picturing a nice evening with my roommate. I glimpse a crack of light under her door. She’s still awake. Of course she is. I switch the icepacks and close the freezer. A wave of pain overtakes me and I need to sit down. I collapse into one of the armchairs in the living room, the towel screwed up into a ball in my clenched fist. The icepack in my other hand is cold enough that it should be uncomfortable to hold by this point. If it is I don’t notice.
I can’t go to my roommates room tonight. Her bed isn’t comfortable and I know I wouldn’t last two minutes. I adjust my plans. I’ll ask her to come to the living room. I’m sure she will if I explain why. If I can explain why. I look over at the much smaller tv in the living room. It will still be fun. A good distraction. My migraine-sore neck muscles complain I’ve been holding my head stiff, straight up for too long. I gently lean back against the chair’s headrest. The seam of the chair hits right against my injection sites and I immediately yank my head back up again. Right into the eyeline of the neighbor’s spotlights. There are four of them. They pierce through the living room window between the broken gap in the hideous venetian blinds that, in theory, block out light. My house is uphill from the apartment building with the lights so what they’re doing shining up into my living room window is anyone’s guess. I suppose the building manager is anticipating an attack from above. I wonder for the fiftieth time why the only section of any of the many flimsy plastic blinds in this house that’s broken is the one that might, maybe block those eye throbbing lights from my view when I sit in the one comfortable chair in the living room. What do I want? I want the evening I envisioned. But I can’t do it. Not tonight.
I’ll never get comfortable out here. Not tonight. My roommate is still in her room. I wonder if she’s heard me get up. My dog must have woken and noticed I was gone because he comes out of my room, still blinking sleep from his eyes. I drag myself to my feet. I ask him if he wants to go out and he wags his tail and crosses over to me. I open the back door for him. For a moment I consider going out with him. Sitting on the back porch in the cool night air. Holding my head in my hands for want of anywhere else to put it. But then I see the neighbor’s lights, and I close the door behind him. I lean against it for some length of time, until I hear the bark that means he wants to be let back in. I open the door and he walks back in. I catch one last look at those godforsaken lights and return to my room. I lay down in my bed in my dress that is not a night gown. I put the ice pack I’m still clutching between my head and the big pillow that’s still propped up just as I left it.
I’m alone again. Except for the dog. He falls back asleep quickly. I turn my music back on and all my thoughts return. It seems like a dream that I ever got up at all. Except my door is open and it was closed before. And the icepack behind my head is colder than it was before. That’s something. I don’t know what else to do. I reluctantly lean away from the soothing cold to grab my laptop out of the bag in my desk chair. I open a new word document. I write this story. I think it helps. It’s not a very good story, I know, but it’s mine. At least for now.