rash-glasses

in which I communicate from the depths of my haunting and die in various fictitious settings

I am surprised, in a way, that only a month has passed since my last post. This is because I write this during a very strange time, and it feels as if I have lived many lifetimes and possibly died and been reborn in several of them. This will probably not make much sense to you unless you have ever been very ill.

Being very ill feels rather vintage. I remember being about twenty-one and realising that if I had lived a hundred years or so earlier, and managed to survive into adulthood, I would probably be someone's invalid cousin who lived in a sanatorium, perhaps in Switzerland. It's interesting because nowadays there isn't really a social role for the young and very ill in the same way. We all like to continually labour under the delusion that modern medicine has done away with this phenomenon once and for all, and that simply by taking multivitamins and going to the doctor you, too, can be just as healthy as you like. Which I would imagine, for most people, is very healthy.

figure 1: consumption chic, image via

I have been ill for ten years now, in a patchy, turbulent, random sort of way, which I think is fairly standard for autoimmune disease but quite weird otherwise. In many ways it does feel like being inhabited by some kind of malevolent supernatural being that at times is quiescent and at other times (when Mercury is in retrograde?) surges up out of the underworld to feast on your tissues. This current surge of demonic tissue-feasting activity is my worst flare to date. In a way this is good because it makes doctors pay attention to me and take me seriously in a way that they sometimes prefer not to. On the other hand it is not so good because at times I have been in acute agony for several days at a time.

Life takes on a particular strange rhythm during a haunting such as this. Last year my disease demon started eating my core and legs, and unfortunately it has yet to tire of these targets, which is annoying because demonic possession in your muscles makes it exceedingly difficult to move. I spend a lot of time in bed, switching regularly between supported sitting up and lying down, watching the light change outside my window, noticing which birds go by and on what trajectories, observing the structural arcs of the cobwebs that hang in the corner of my room. The room itself starts to take on more and more detail the longer I stay in here and look at it. I notice tiny holes in the wall. I notice what times of day wasps try to come in. I watch a spider eat a live entrapped fly and feel rather more affinity with the fly than I would like to.

fig 2: the cathartic imagining of literary death

Other times I lie here and don't look at the room at all, but examine my own mind and imagination and memories. These, too, can become almost excessively detailed (and full of tiny holes) if you look at them for long enough. Sometimes I write them down. Sometimes I read other people's writing and imagine that overly vividly as well, especially scenes where people are sick or dying. It was strangely comforting to read the bit about Melissa almost dying of a fever in Justine by Lawrence Durrell and to have a sense that being very sick and feverish was a sort of unifying human experience and not just a thing that I am doing alone in my room for weeks on end. Right now I am reading My Antonia by Willa Cather and people keep dying on the prairie and I sometimes like to imagine I am one of them, just to try out something different for a while.

Sometimes I have suddenly really brilliant and strange ideas while lying there hanging out in my own head. Sometimes brain inflammation kicks in and I fall asleep in the middle of a thought and wake up with my face in a bowl of cereal and no idea what is going on.

fig 3: my rash variations.

I have developed a rash. My rheumatologist is terribly excited about it. I feel quite proud of my body for producing such a rash after years of being enigmatic and misleading about its intentions. The rash is bizarre and idiosyncratic. Sometimes it looks like red eyeshadow, and other times it looks like I am trying to produce a pair of spectacles out of my own skin. Occasionally it looks like I somehow gave myself two black eyes (perhaps while I was thrashing around in the throes of death on the prairie). When I am occasionally outside of the house I wear sunglasses because my eyes are very UV sensitive, but I feel a certain thrill at the idea that no one knows that I am wearing my own personal rash-glasses under my sunglasses, and that no one would know what to make of this if they did know (except rheumatologists, who would all start frothing at the mouth to stick me in an MRI machine).

I have been hiding and not updating this newsletter because I kept thinking that if I hid long enough and ate enough multivitamins I could pretend to be a marvel of modern medicine and wouldn't need to admit that I am currently haunted. I think there is a bit of societal shame around being haunted in this day and age. It is no longer so au fait as it was back in the day. But now that the cat is out of the bag, I plan to try to communicate every week again (perhaps by ouija board).