I’m 47 and I’ve been ill with ME/CFS for 16 years. For half of those years I was able to get around, somewhat sustain myself, be helpful to others, go for bike rides, and conceive of and create complex art projects, while crashing occasionally and then recovering.
Lately, most days both my mental and physical energy are sluggish at best. I crash 3-7 times every month, for 8 to 72 hours. On those days, it’s an effort to breathe, and I’m lucky if I can get to the bathroom, a project which requires an hour of mental preparation, 5 minutes of intense physical exertion (slowly scooting on a plant dolly across my apartment) and then a few hours of crushing recovery, a sensation which I refer to as “The Anvil’. On good days, I can get out of the house, see family/friends, walk around, interact, comprehend what is being said to me, make jokes, and approach tasks that have fallen by the wayside. I have maybe 60 truly good days in a year.
I rarely get ideas anymore. If I’m really lucky I can make a few blobby paintings, which have all but replaced the unfinished more cerebral project I put my heart and soul into for over a decade (arielkotker.squarespace.com). That project requires hand strength, steadiness, much keener cognition and a general sparky liveliness, all things to which I’ve almost completely lost the key. If I'm really, really lucky, I'm able to create a new piece for it about once year. If I recovered today, the first thing I’d do is hang out with my friends and my Mom, then happily buckle down and get back to work on my long-lost, much-missed installation project.
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