I’m sorry for going quiet, and I am hugely grateful for the patience of anyone who supports my work. I’ve been laid up unwell for the last seven or eight weeks, and haven’t been able to work beyond the absolute bare minimum, and sometimes not even that. I also haven’t been able to go out, or protest, or really do much of anything. The tedium of illness makes a good teammate for self pity, so I won’t go on about it too much, but can at least reassure both you and myself that it’s not a flare up of the chronic condition that both structured and destroyed my life for well over a decade. It’s only been in the last few years that I’ve been able to get it under control, or at least to a point where it’s an aspect of my life and not the deciding factor.
I started to get unusual symptoms in 2011, and very quickly became aware that I was, as per my worst and most persistent social fears, becoming a drag. I tried to think of different ways of saying “much the same really” when people asked how I was, but there really is a limit to that. It didn’t take very long for people to stop asking, and for me to settle into my new role as a sick person, and as a drag. Being a drag is not high on the list of bad things about chronic illness (I’d say the brute material reality of severe limits being imposed on your working life was higher, the humiliation of trying to explain that your inability to do most work is incapacity and not preciousness, the wasted days, the wasted years), but at first it seemed a fair trade. I had always been an unusually healthy person, almost offensively so. When I got chickenpox as a child I got precisely six lesions, and was back on my usual routines two days later. I found out in the first year of university that I am genetically immune to mumps. I never cried when I fell over, I’d never broken anything, I barely got colds. I was more than due for a reversal of fortunes, and even though this was not related to what came after, my first experience of being seriously unwell was when I picked up, of all things, swine flu.
This was fine by me, for a day or two – I had a nest on the sofa, and E4 still existed so I could watch hundreds of hours of twenty-minute sitcoms. I worked on my pig impressions, and came up with some pig characters, all of whom had the flu. I think I envisaged a kind of pig hospital, with all of us on special diets until we were well enough to return to the farmyard. My then husband tolerated this amiably enough, and brought in soup at intervals. However, I didn’t really get better. My gums, tongue and throat swelled up, and I couldn’t eat. The idea of a drip, a joke based on the pig sick bay, started to become a real fear – I began to get intrusive thoughts about dying. You could die from flu after all, and it seemed particularly unfair to die of pig flu. It wasn’t as if I was hoping for something called glamorous frightening harpy flu, but maybe a more dignified animal. I’m very fond of pigs, but they’re not as noble as say, an eagle, or a large glossy horse. I rang the line you’re meant to ring, and described my symptoms – I was told to make an urgent doctor’s appointment. I said “but I have flu. There’s nothing you can do for flu, apart from rest and fluids”. The trained medical professional on the other end of the line was admirably patient, and said that in extreme cases there was medicine I could be prescribed. “I’m not an extreme case”, I said, thinking “I’m unusually healthy. I’m stoical. My optician said that my optic nerve was so perfect it could be used to teach optometry students what an optic nerve in the picture of health looked like”.
“You said you couldn’t eat”, she said. “That’s extreme.” I went to the doctor, and got given an antiviral. I told the doctor that I thought you couldn’t treat flu, apart from with rest and fluids. I don’t know why I became so keen on the expression “rest and fluids”, but I’d developed a kind of echolalia with it, and muttered it to myself from time to time. The doctor repeated what the woman on the phone had said, which is that in the main flu is self-limiting but if it’s bad enough, yes, there is medication. I took the medication, and got better. The symptoms started not long after that, and although my brush with a hog-sanctioned death should have reframed my attitude to my own health and my own functioning, my own participation in life and the wider world and my own capacities, and how fragile this all was, and how easily I or anyone else can become incurably and indefinitely unwell, shunted to the margins and no longer asked how they are. I still thought I was a peerlessly healthy person, I was still the six year old who hadn’t cried when she fell off a full speed roundabout, I was still the the girl who accidentally cut her shin open badly enough to scar and stuck a plaster over it and went to a party. It never occurred to me the first time I went to a doctor to see what was up with this new and entirely alien set of symptoms that I was entering a new reality, similar to this one and definitely parallel, but distorted. In this reality I was a sick person. In this reality I was a drag.
Next time! More on the year 2011, which I have been thinking about since I have not been able to do anything else
As a proud member of "sure, it'll be grand" #WeExisit
God what a great piece
What a cliffhanger ending...! Like a twenty-minute sitcom episode, perhaps?