ME/CFS Project

So it has been a while since I’ve posted. We’ve all had that year with covid. I’ve continued to make new Identity Tapestries (for shows that are now postponed) and a few light paintings, but other new art has stalled… until last night.

I had an idea for a piece which has been slowly percolating its way through my brain for a while now and suddenly gained shape. I have been struggling with how to talk about ME/CFS (a condition that has caused me to be in a wheelchair for the past 4 years) in my artwork.

What has struck me is the power of the social media posts of fellow ME/CFS sufferers as a window into our lives. I have decided to create a work using these (anonymous and always with permission) together in one piece, possibly also with photo images. The text will be embroidered onto hand dyed fabric panels in various shades of blue. The photos if I decide to use them would be rendered into blue dye on fabric using photo-reactive dye. This will make the images a little less recognizable as specific people, but hopefully the sense of exhaustion they feel and their humanity will come across. If the images don’t work the way I want, I will stick to the text.

first super rough sketch

I think the anonymous raw, un-edited social media posts of severe ME/CFS suffers would provide a very specific, candid window into our lives. So many of us only show our best selves in public (if we have the luxury of being able to leave our beds) and even our friends and family don’t see how we suffer. The raw posts- with all the typos and things intact also show our mental state as it is.

ME/CFS is a terribly debilitating condition affecting a CDC estimated 2.5 million (likely more now since covid and “long covid”). Many experts think the parts of long covid that are not direct physical scarring or results of blood clots are actual cases of ME/CFS. It can happen after any viral infection. I got it four years ago as a result of a different virus and now need a reclining wheelchair to leave the home. Those who have the most mild cases can still work and walk, they just feel exhausted or flu-like all the time. Those who suffer most among us need stomach tubes, catheters, and total sensory deprivation (dark rooms, noise canceling headphones, etc.) so as not to overload our senses. I was pretty severe, but now am moderately severe thanks to careful pacing and many medications and supplements. Where I used to only be able to sit upright for 15 min, I can now do it for up to 2 hours, which allowed me to paint and sew again.

I want to tell our stories. I want to make this pain visible to people through my art, and I think I found the right way to do it.

If you have ME/CFS and you have a social media post you would like me to include you can alert me at contact@marymarch.com Ditto a headshot of a moment that really shows you struggling. Otherwise I will be finding them myself and asking permission.

If and when I ever sell this piece any profits above materials costs will go to Solve ME.