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.

Transitions- continuing my art through illness

The corner of my empty studio

Since becoming sick with ME/CFS, I have had a lot to contend with and it has changed my practice.  I have limited energy, and I have to spend it wisely.  I have only minutes at a time of standing, walking, holding my head upright, etc. before I need to take a rest.  Then again, my practice changed a great deal when I became pregnant, and it turned out to be the best thing that ever happened to my art (I did the first Identity Tapestry while pregnant and it brought me into Installation).  The main effect is that I have to pace myself, and think through everything many times before I make the effort of _making_.  I suspect it will generate more thoughtful new work. I also have new reserves of patience, and new understanding to feed my empathy.

Right before I got sick I had come to an inflection point in my work where I knew I would have to start hiring assistants to complete large projects, but I was dragging my feet.  For those not familiar with how art at a certain scale of production goes, this is pretty normal and has a long history reaching back to the studios of the famous Renaissance painters and before.  Even without being sick, I needed to accept that I now needed assistants.

For the three shows I did in the first year of my illness, I relied on the help of an awesome network of friends and my husband (who even learned how to dye wool!) to help me do my work.  They were my hands. They got me through the installations at the Contemporary Jewish Museum, The San Jose Museum of Quilts and Textiles and at the Marjory Barrack Museum.  Initially it was hard to conceive of hiring strangers to come into my home in the vulnerable state I was in, given that I had already resisted it before. I wasn’t ready then.

At the same time I became sick, we realized we had to do major repairs to the foundation of our house, and it became a huge remodel complete with moving out.  After I did the museum shows that year, I buckled down to the task of packing and purging the house… again with the help of my amazing friends.  My outside studio space was unreachable for me (and not wheelchair accessible even if I had the energy to work after driving there and parking) and essentially became expensive storage while I hoped I got better.  I turned down some shows and applied to nothing while I used all my energy to move house.

Today I am a little better overall.  The house is moved into a temporary space, and I finally let go of my studio of 14 years.  The new studio and shop space I will have in our house will be an absolute dream though, and I can’t wait.  In the meantime, I have use of our temporary garage and have set up the studio there, complete with a chair that supports my neck and torso so I can sit up longer.

Now that I have the moving hurdle done, I am back to exciting new projects!  This spring I will be doing a new participatory installation that I have been thinking about since 2014 and am super excited about: Access.  There is also another installation in another country coming up in the summer which I can’t wait to do.  Details will follow when everything is confirmed, dried and dusted.

In the meantime, it’s time to take the leap and hire some assistants.  Whatever my condition, my work will continue.