The Importance of Listening Even When You Don’t Know Your Body’s LanguageGuest Post, · Categories: Guest Posts · Tags: health, progress, self-advocacy
This summer, I thought I caught a cold. I was feeling off, and a cold seemed like a small, simple explanation.
I asked Google, who told me that the average cold lasts 7 to 10 days in the average adult.
As day 11 dawned, I realised I was wrong. It must be the summer flu. Of course. Here was a diagnosis that could fit around my symptoms like a blanket around shoulders. So comforting. Pass the blankets, hand me the Golden Girls omnibus.
But I was wrong.
The thing is, when it comes to health, I’m an idiot. I once sat with a throbbing, hot appendix, read about someone else’s constipation, and asked a boy to bring me laxatives: the final step after three days of peppermint tea cures. (I mean, come on. If I was really sick, I wouldn’t be able to Google so many illnesses.) Even by the time I got to the hospital, they postponed my surgery because I didn’t complain enough. There was no way it could be that bad, that close to bursting.
It was, it did. I didn’t die. It’s fine.
Sort of. I mean, that story ends with a hernia years later, because I didn’t let it heal right. When it started to hurt again, I told myself that it was fine, it was normal. (If there was something really wrong, how could I be having so much fun in the gaps?)
Too much, too soon, too optimistic, as ever.
In fact, I only fixed the hernia because someone told me You don’t deserve to be in all this pain. I don’t? You don’t. Okay. This person is the reason why my body is still here at all. They like me to look after myself–sometimes they insist. I’m flabbergasted. But I play along, and my life edges towards a better place.
ANYWAY. This time around, the doctor said, It’s summer, everyone’s tired. That should have made me more angry, but I’m Scottish and when a doctor tells our people it’s probably nothing, we blush and make a vow never to ask anyone for anything ever again.
(I’m also a woman; this is probably relevant too.)
So: it wasn’t a summer cold or the summer flu, but it was summer and I couldn’t get out of bed any more. I couldn’t help thinking it was something, no matter what the doctor said, no matter how many times my embarrassed genes flared in protest.
The dizziness made me feel like my body was unravelling. I’d stand up, the world would shift, and suddenly it was if there had never been anything beneath me. Not a thing. In a moment, all the sweet outdoor pretty sights would twist and turn into horror shows. Like swimming out beyond the ledge and the trench cracking open—an infinite subaquatic drop that logically won’t hurt you, but what if buoyancy forgets how to work? What if you lose the surface, you plummet?
The first time it got really bad, I was alone in the park, trying to write my novel, after staying up late the night before with my favourite poet friend. I lay in the grass, the sun cast down on me, and I swooned while already horizontal. My arms sank. I saw bugs running all over my skin, and I was struck by a deep and unholy terror—a terror that refused to abate when I realised they were, in fact, real (I was sitting in a pile of ants).
I went home, I vomited, I panicked.
My loves came round and comforted me, but from that day on, all the things in my life that had been my favourite—the sun on my skin, a night in alone, a plunge into the cool water of a lake—felt tinged with fear.
I’d always enjoyed so many things, but something changed, and I couldn’t anymore. It wasn’t just that I couldn’t gather the energy to leave my room (although that was part of it)—it was the lunatic accompaniment to this feebleness that hissed: what if you’re never able to do anything ever again? And more: what if you just went crazy?
I’ve always been terrified of losing my mind.
So stupid, so paranoid, right?
You’d say that, except that my last lover, the one who refused to bring me laxatives when my appendix was bursting, did lose his mind. All-of-a-sudden, the way you don’t expect it. I can’t explain it to you, except to say that: if you don’t understand it, you don’t understand. But sometimes, somehow, it comes out of nowhere.
So maybe I was going crazy because I didn’t look after him well enough. Maybe I was losing my mind because I carried on living after things fell apart. Maybe my punishment for not understanding him was to go through this: a grotesque summer play where I had to sit tight in the front row and watch my own mind unravel.
It felt like that. I had been in bed for a month. I kept jumping at the sound of car engines on the street. I thought I’d pass out in the hammock while things vibrated too loudly in my blood. There were gaps between things that I didn’t know how to fill. Maybe I would fall; maybe I would accidentally stab these scissors through my hand.
I still didn’t know what was happening.
I fell deeper into Google. Symptom checkers and Wikipedia pages.
I remembered having a tick bite years ago: it’s probably that.
I spoke to a friend with glandular fever: oh that, it must be that.
Oh look, I must have a fever.
But I didn’t have a fever. I didn’t even have a sore throat. The blood tests came back and said everything was fine. Yes, I had been bitten by a tick. But that was years ago. The shitty, stupid doctor said that it looked like I was getting better. That I should just wait. That it’s summer, everyone’s tired.
But I wasn’t getting better. I was unravelling. Nothing was fine. No one else was that tired. Other people were capable of walking to the park, of lying in the sunshine, of walking hand in hand by the canal. I hated them, all of them. I hated the ones with hangovers, who had no idea just how great they felt. I hated the old people I saw on the street while I hobbled back from the doctors, the ones who were twice my age but didn’t look like they were dying, like they were terrified of the sun.
I didn’t want to be terrified of the sun.
And then a week later, a week after the doctor said my blood tests were fine, another doctor—a woman, who was there to test my balance by shooting hot air jets into my ear canals—took one look at my blood test and told me to go to A&E. Find a neurologist, and for god’s sake, start taking antibiotics. Now. Of course it’s the tick. And this double vision, it’s worrying. This hearing loss. The infection might be in your brain already.
“A week later”—that sounds a quick segue. It wasn’t quick. It was seven more days of lying in my sweat and twitching. I just don’t feel right, I told my person, crying again. Crying all the time. Crying in the afternoons while I drew the curtains against the sunshine. Crying while they stroked my hair, I know. I’m so sorry. I love you. It’s going to be okay…while I Googled everything, while I cried onto my keyboard, onto them, holding out my laundry list of diseases: I don’t want to have all of these things.
When they admitted me to the hospital, they tested me for all of these things. They tested my blood and they tested my piss and they tickled my feet with a tiny metal hammer to see how much I’d twitch. They put me in an MRI scanner, which sounded like dial-up modems cranked to level eleven. “Level eleven”: that’s a Spinal Tap joke, which is appropriate, because they also gave me one of those. The trainee doctor said “oops” during it and the pins and needles exploded all over my toes.
My neurologist was very, very cute.
My hospital meals were not.
Perhaps I shouldn’t have lied and told them I was vegetarian. Perhaps then I wouldn’t have got rice pudding and iceberg lettuce for lunch every day.
Can you tell I was feeling better by this point in the story? In some ways, I was still terrified about everything, because I did not want to have things in my brain, things that came from ticks, things that were making me see weird things in the corners of my vision. But it was such a relief to be in the hospital. In the hospital, they took my blood three, four, five times a day. In the outside world, they told me to go home and wait.
And in the outside world, while I was waiting, I couldn’t stop looking around inside my body. I couldn’t help noticing that it was so obviously, stupidly broken. The shit doctor was like a drunk teenager promising me that when the adults arrived home, they wouldn’t notice the puke on the rug and the shattered glass in the patio door. But who could miss these things? How could they not see that everything was ruined?
Things were different with the beautiful neurologist, in the hospital ward, in bed number seventeen. Here, I still had to be tested, but now if I failed, I wouldn’t be sent home to die. Here, the doctors embarked on a communal project to make me the most perfectly well human. They were deeply, personally, invested in the fray.
I passed the spinal tap. I failed the eye test. They gave me a prescription for glasses.
More blood, more iceberg lettuce.
The antibiotics started kicking in.
I fell into the routines of the day. I reread old Stephen Kings, where it didn’t matter that I could only catch every third word. I told myself I was starting to feel like a human person again. Was I? Did it even matter? If I started dying any harder, this was the best place to be.
That was the thought that kept me from panicking.
On my third day in hospital, my person took me out to walk in the park. Leaving the hospital ward felt like getting away with a heist. All the way down the stairs, I tried to look serious, in case somebody changed their mind and dragged me back to my bed. But when I hit the street, I cackled. With the cannula in my arm, the bruises and the bandages, I knew I looked like a crazy person. I liked it.
Maybe I could just keep on walking, onto the ubahn and home. Who would want to come near, to stop me?
It was two days before I would leave the hospital, although I didn’t know that then. In two days, I left convinced I was all better. I spent the next months learning lessons about recovery, and the myth of linear progress. Slipping back, clawing forward, trying my best to stay away from Google.
But for now, I was walking in the sunshine, cackling, not even trying to hide my bandages. Through the rose garden and past the water, holding hands, catching my breath. Did you know this park was here all along, that there were always such majestic trees? Did you know, by the Reichstag, there are bunnies in the grass?
I feel an urge to tie this all up now—to tell you that these days, I’m better. Or that I’ll never get better, but I’m working out how to cope. A final sentence, as if I can somehow step outside my body and explain how it is, inside it, when I’m not a part of all that.
The truth is, in the last three weeks I’ve started feeling like Jane again. I’m giddy and foolish with the promise of it. Touching wood whenever I utter that sentiment out loud, in case my body will hear me and decide to prove me wrong.
The truth is, I’m still an idiot when it comes to health. I don’t understand it, this body of mine. I’m nervous of tripping over it—in case I’ll still, someday, die. But I’m trying to slow down and pay attention. To practice being quiet, so I can hear what my body is saying. To notice the bunnies in the grass.
Jane is an over-excitable pervert with a penchant for ridiculous metaphors and glitter. When she’s not writing, she likes to play cello in the riot grrl band Razor Cunts, teach creative writing, host queer events, and rollerskate down Tempelhof runways in hotpants. Oh, and she likes opossums. http://janeflett.com