Lessons From Chronic Fatigue Syndrome in The Time of CoVid.
28th March 2020.
I lived with Chronic Fatigue Syndrome for a long time. To be honest, I think I still live with a less severe version of it, but I learned over a long period of time how to manage that living.
I’m writing about it now, because I wonder of the experience of it might be useful to people who’ve never experienced being forced to stay at home and have to change their life routines for long periods of time.
There are practical things about how to manage day to day, but the first thing that comes to mind is about identity. When I first got ill I couldn’t listen to music for a very long time: it seemed to invade my nervous system and overwhelm me, especially anything with drums. I’d spent most of my life since I was a teenager identifying myself through my ability to make music, not to mention all the hours spent listening to it. I’d literally walked the streets for many years carrying my violin and many other instruments … carrying my ‘musician’ identity with me. Suddenly all that was gone and seriously, I know longer knew who I was. Was I anyone without being a musician? Was I anything at all?
I wonder if right now, without necessarily realising it, some people might be going through something similar. With the loss of regular roles and routines I imagine it could be easy to have that question hovering around in the back (or even front) of your mind: who the fuck am I now?
For me it was a long journey and a painful one. I resigned myself to the fact that music was probably gone for me forever. I had a long period of just feeling like I was no-one, nothing. It’s hard to stare into that nothingness – really fuckin’ bleak.
Music came back to me eventually (although never in the same way), but that staring into that lack of identity was really important for me. It sounds obvious, but it was a long, long and painful journey to realising … like proper, deep-down-inside realising … that I wasn’t just a musician. That my right to exist didn’t depend on what I did. That just being a human, an animal, a creature was enough.
We’re all losing things right now. Some of it is stuff many other people in the world never had the privilege to have in the first place. For some the losses will be irreparable.
In the experience of the particular loss I experienced in the years of illness it was literally life-saving eventually to come to realise that I wasn’t those things that I relied on to make me feel of worth. Loss is painful, really painful and I don’t want to get in to ‘everything happens for a reason’, or some kind of ‘be positive’ bullshit … I’m talking about a really tough and painful experience of loss of identity, but you can lose a lot and through hard experience discover that those things aren’t central to who you are or your right to be. Somethings may return; like my music, some aspects of it might never return and you will never be the same again. But without them you will still be a human, an animal, a creature … enough.