steroid-song
in which I report on my very small and slow life during an autoimmune flare
Slowly, agonisingly slowly, the higher-dose steroids are starting to help. It's the sort of improvement that's so subtle that it makes you question your own perception - did I feel lighter there? Did I make that movement a little easier than yesterday? Did I really just raise my hand above my shoulder, or was it a trick of the light?
I read texts from friends. I drink tea.
Painstakingly I gain little crumbs of function, and as a result little chinks of power and autonomy break through the heavy fog of care surrounding my current existence. I can dress myself. I can brush my own hair. I can get in and out of the bath without assistance. Some wins are even smaller, more subtle – it no longer takes a herculean effort to roll over in bed. I can shift my body a little to look at something outside the window. I can sit at the table and have a conversation, my core and abdominal muscles pulling the double duty of holding me upright and powering my diaphragm. These are the grains of sand that make up the castles of bodily movement, and I notice each and every one, glittering.
I order new pyjamas online. I listen to the trees.
You can't stay on steroids forever and at the end of this period is a void. I imagine it like a sort of textured chasm, filled with puffs of smoke or perhaps moss in bruisey blues and purples. I don't know what happens in there; it is the Uknown. I have never been this sick before and I don't know what comes next. Before I got to this point I thought that steroids made you better permanently and I have only just found out that they often don't.
I watch other people do crafts on youtube. I read books of poetry.
There's a whole dimension of movement that is completely lost with this kind of illness, which is expressive movement. Walking with a spring in your step, jumping for joy, or punching the air in frustration. Anxiously drumming your fingers on the table. These are movements that, when muscle use is so rationed, must be sacrificed in favour of all the morsels of function that can be eked out of any particular muscle. Instead of your mental state your body expresses only its illness again and again - limping, tripping, hunching, leaning, collapsing.
I think about things. I buy comfy socks.
My grip strength is unaffected but the stabiliser muscles of my upper arms are, and so I struggle exquisitely with aiming my hand for the thing I want to pick up, as if I have become one of those arcade claw machines designed to suggest success but never actually win. One thing I can do now that the steroids have restored some diaphragm strength is yell in frustration as my hand refuses to go where I direct it.
I appreciate a vase of flowers on the windowsill. I take pills.
In spite of all this, in every moment I am completely and strangely, almost absurdly alive. Things are beautiful. Sometimes I feel very sad and that can be beautiful too. I live a tiny life inside a tiny square but it rings with all the dimensions and richness of the larger, more sprawling lives I have lived in the past and may live again in the future. My tiny life in this steroid song is not muted or faded. It has the full amplitude of any other life and then some; it is only the wavelength that has collapsed, so that everything must vibrate on top of itself in strange buzzing harmony.
I am alive, goes the song. I am here.
