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.