Summer comes to an end just as I am finishing up some of the
hardest months of my life. I just finished nearly six months on a super-aggressive
antibiotic treatment for Lyme disease again—years after I thought I’d never
have to go back on them again. Being on any medication long-term is hard on the
body and so is coming off of it.
Sick sucks. It’s limiting at best. At worst, it makes the
best moments miserable. These days I am in awe at how easy life is when I feel
well.
I had plans to end this phase of treatment in style by
heading back out to Burning Man but I bailed at the last minute. I have
outgrown it. It is so easy for people to say, “Well, yea, outgrow it already.
It's just a party in the desert,” but for me, it is about so much more than sex,
drugs and electronica. It was the first thing that I did after being diagnosed that
made me believe myself to be a part of this world. The first year I went out,
four years into treatment, I was still so sick that I slept most of the time,
the same as if I were at home, and had to watch myself carefully so that I didn’t
collapse.
Out there on the playa, after years of living close to home,
of hooking up to an IV at breakfast and dinner, of living the saddest half-life
I could have ever imagined, I felt like a part of something communal, something
bigger than myself instead of isolated outside of it. Becoming a part of the
world again allowed me to believe in my potential to heal and grow stronger.
I have outgrown Burning Man, yes, but not in the way of
someone in her mid-thirties has outgrown partying like a 25-year-old. Years
following my first burn, even with knock-me-on-my-ass treatment, I do live with
both feet in this world. It’s taken a lot for me to get here, though, and it
all started by being around the crazy vibrancy of people playing in the desert.
Years of shuffling from doctor to doctor and wilting under a barrage of
medication, I had forgotten how to play and laugh. I had forgotten how
wonderful life is.
This year, instead of dancing under the open sky, wild and free, I want quiet and the chance to tend to myself. This city is
giving quiet to me right now—San Francisco is never so vacant as mid-week into the
burn. I am healthier than I have
ever been, but I still have a ways to go. I want quiet because I am finding that the hardest thing so far about
chronic illness is putting together a life when the illness is nearly over. It
feels a little bit like showing up to dinner when everyone is already on
dessert.
