Saturday, April 26, 2014

New Year, Same Fear.

Ewings is a nightmare that refuses to end. Some of us, for some unknown reason, are granted the reprieve of remission-- we wake up in a fog, only remembering bits and pieces of the terrible dream, but the feeling, the overwhelming exhaustion of the struggle, the terror of confronting something so threatening and horrifying, remains with us. We are so relieved to see the day break, we go about our waking hours with a new appreciation for light. We try to forget the night, but deep down we know that eventually, sooner or later, our bodies will grow tired and this terrible dream will find us again.

How's that for an update?

I finished my year of chemo, surgery, and radiation in late October. I am in remission for the third time, but the indelible stain of the past five years remains fixed.  I don't understand why I'm still here while my loved ones are gone. It's not for lack of spirit, or fight, or hope. There is no reason and we must accept that. I feel like a veteran of war, except the war is inside my body, never-ending, and there is no escape. How to live, then? I've learned the art of detachment and it has served me well-- I am able to laugh, feel happiness, make half-hearted plans for the future, fall in love, travel, visit friends, make art, make mistakes, and not think of cancer. I pretend to move on and I pretend to be "all better", partially because it's what everyone wants, including myself,  and because it's the only way I can survive. Fake it 'til you make it. Or break it, whichever comes first.

So this is what I've been doing since my last update-- enjoying life as best as I can, pursuing new opportunities, blocking out the past. I'm still trying to make sense of this monstrous struggle that has consumed most of my twenties. Despite everything, the pain and the loss, I am happy with life.

Something noteworthy: After two years of fighting, appeals, and endless paperwork, I finally received my disability approval last month. TWO YEARS-- during which I relapsed, went through 12 months of treatment, was truly disabled, and desperately needed monetary support. Better late than never? Since finishing treatment I have taken a string of freelance jobs to support myself, now finding a niche working on production for visual artists in the NYC area. The pay is negligible, but I am able to set my own hours and invest my time working with artists I respect on projects that inspire. It makes me truly happy collaborating with amazing minds.

Which brings me to this show.

More detailed post to follow, but if you're in the NYC area Thursday May 1st please join me for the opening of Chemosynthesis, a visual and performance art show benefiting Ewing's Sarcoma research. Together with poet and fellow survivor Max Ritvo, we attempt to confront the complexities of a terminal cancer diagnosis in our twenties. Opening 6-10pm with a reading and performance at 8:30.

My next scans are scheduled the morning before I hang the show. It will be... a long day.