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.

New Experiences, New Material

This photo represents one of the first bright spots in my new life as a disabled person (with ME/CFS). Last weekend was the first time in nearly five months I’ve been really able to move around outside the house, thanks to finally getting a power chair that supports my neck and torso.  We went to Disneyland for my daughter’s birthday wish, and we did it to the nines.

I’ve been working on the next two installations (for the Contemporary Jewish Museum and the San Jose Museum of Quilts and Textiles), with the assistance of friends. I know I will need to hire assistants for new projects, but I’m still feeling freshly vulnerable in this state and I need to adjust.  Also, while I love inviting strangers into certain phases of my process,  I’m very picky about who I let into other parts of my process. Thankfully I have amazing people around me.

With my current condition, half the people get better within two years, and most of the rest never do.  I made the mistake of waiting a year for my back to get better nine years ago, and until my muscles stopped working (and compressing my spinal nerve), it never did.  I am thankful to be out of that level of constant pain, though I know I would trade back the pain for mobility in a heartbeat.

So… I am not wasting time now.  My art is moving on, and I have a fire under me to make new work about this experience.  I am very aware that disabled or not, I am very fortunate.  I have good insurance, my husband’s job supports us, freeing me to do my art without the constraints of whether it will sell or needing another job to support it. We have enough money that my condition is not bankrupting us and I was able to buy the expensive chair that allows me to.  I have supportive friends, an education, the tools to self-advocate, and so much more.  But this has thrown into relief how if this is so hard for me, how much harder it must be for most people.

After my recent experience of traveling with a wheelchair, the systemic lack of consideration and ability to do simple things like take a cab with any reliability, get on a plane you were assured you could take your chair on, or arrive with that all-important chair in one piece have given me fire to push for awareness.

I knew I had been thinking about a piece on Access for a while, but I didn’t realize it had been this long!  June 2013!  Usually with something that scale and cost it really helps me to know it will have a space to show first, but I don’t care anymore.  I will build it, and I will find it places to show.  As soon as the next two installations are wrapped, this is my next project.   I have been thinking about it on and off this whole time, and developing it, but now I have new first hand experience of being confined to home and wheelchair to add.

All that said, this new piece isn’t only about disabled access, it’s about all kinds of invisible access- financial, educational, social, racial, cultural, linguistic, etc.  It is about making people aware of what they can do without even having to think about it, and where others are barring and struggling to get in.

 

Overcoming Challenges

It has been a while.  I have two pieces going up in museums shortly, and there will be another post for that, but I wanted to tell you what has happened to me recently.

For the past four months (since May 20th) I have been pretty much incapacitated.  It started as suddenly feeling odd, tired and wrong at Maker Fair (while hydrated, fed, cooled and well slept).  By the time I got to the car I was too weak and tired to move my arms without effort.  There were many tests, and for over two months, no consensus on what was wrong.  As a woman with a hard to diagnose medical problem (a group classically ignored and patronized by doctors), one doctor told me it must be psychosomatic (though thankfully he was only one out of six and the others did take me seriously).  It turned out to be CFS/ME, a condition that many derided as not real.  Thankfully Stanford finally developed a blood test that shows it is in fact a real thing and published just this July, and NIH has begun taking it seriously with research and funding the last two years.

So… even typing while lying in bed with my head propped has been difficult.  Holding my head up has been a effort that left me sore like an intense workout (and as a competitive gymnast, 15-year martial artist and circus person I know what that feels like).  I was not sleepy ever- my mind was fully awake, but my body could do almost nothing.  It turns out this probably started over a year ago when I had a severe virus that sent me to the ER for _four_ bags of saline.  They told me I was lucky to be alive, and I haven’t felt quite right since, with random bouts of weakness.

With this going on I have not been actively looking for shows and commissions, but when the Contemporary Jewish Museum asked me to do an installation I could not turn that down.  I also kept with the other museum show at the San Jose Quilt and Textile Museum I was already signed up for because I knew I could do it with assistance.  And I am.  I will be there with my art even if I am in a wheelchair, and my art will not suffer for it.

For a while there was no sense of any time recovery might happen (if at all), but for nearly three weeks now I have been on an experimental antiviral treatment that seems to be helping, so fingers crossed.  Not knowing was very hard, but today I am hopeful.  If nothing else the experience gives me more empathy for those in similar situations.  In good news, my back hasn’t been in pain every day for the first time in nearly nine years! Apparently the muscles are too tired to tense enough to squash the ruptured disk.  Little victories.