Everything Changes - The Guide to Young Adult Cancer

For me, there has always been a strong dividing line between art for therapy sake and art with a capitol A.  The difference is an audience.

I gushed my cancer story into 12 journals during treatment.  Scribbling in a notebook was great for getting cancer angst out of my system.  But hammering out these rants was a quite different process, and created a different product, than crafting the manuscript for my book Everything Changes.  One had an audience, the other did not.

Recovering from surgery, two summers ago, I was doing a choreographic residency.  Blasting Led Zeppelin and stomping around the studio with my stiff, post-surgery neck helped me accept my incurable cancer.  But improvising in the studio was a very different act than choreographing the ballet-opera that became the final performance of my residency.

At times being an artist with cancer is a mind f***.   The cons: I want to write and choreograph about something other than my disease, but cancer so often enters my work even when I don’t want it to.  I also hate when people assume that my cancer was a great artistic opportunity.  I was a damn creative person before my cancer and didn’t need this diagnosis to provide content for my work.  Nor do I want an audience to feel cornered into empathizing with my experience of being ill.

But there are also pros: A life in the arts prepared me for how to live very frugally - helpful when you are young with a pre-existing condition.  I’m a really expressive person – quite useful when you are trying to communicate with doctors, and friends, and family about your needs.  And, I have a job that is fulfilling and provides a major distraction from thinking about cancer.  Well…. except for the fact that I keep writing so much about cancer.

I yearn for an art project, craft, or a hobby that is totally unrelated to health.  Some days I wish I knew how to knit.  But I fear that if I did I’d just end up knitting hats for chemo patients.  After treatment, I took a class in techniques for transferring photographs onto fabric.  I have never done anything at all with this artistic skill.  What a remarkable, relaxing relief.

Do you have any crafts that distract you from your cancer?  Is your profession related to cancer, illness, health care?  If so, how do you find balance?  Do you enjoy seeing or hearing music or artwork made by artists with illness, or is it not relevant to you?

Listen tonight to the Stupid Cancer Show when I interview artists and cancer patients Seth Eisen and Christina Falise.

For more about my life in the studio with cancer, read my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’m a geek. Just the word ‘library’ kind of turns me on. So imagine how enticing it was when I was recently asked to choreograph a site specific dance performance set in what was the circulation desk for the old main branch of the Chicago Public Library. And here’s the kicker…. It is for a festival where all of the work focuses on disabilities.

So the question is do I have a disability if I have cancer?

I think most people with visible physical limitations are immediately categorized as having a disability. (And some of us cancer patients do have scars, amputation, baldness as a visual cue of our disease.) But what about chemo brain, or needing someone to take notes for you because you have neuropathy, or missing work or class for radiation treatments, or having to take frequent bathroom breaks? Do these limitations make us disabled?

Cancer legal advocates fought hard to get cancer and even our long term side effects included in the 2008 addendum to the Americans with Disabilities Act. Wahoo! I say forget the stigma of the label ‘disability’ or if you wanna be politically correct then go for ‘different abilities.’  Young adult cancer survivors spend a lot of time with broken hearts, financial mayhem, and employment barriers because of the ways our bodies live differently with chronic disease.  I’m damn glad when our hardships are recognized, given some rights, and a little bit of performance space.

Do you think cancer is a disability? How do you feel being called ‘disabled’ -does this label help or hinder? If you don’t have cancer, have you ever considered it a disability in others?  The model in the pic has a heart disease that caused the deformation of her arm.  So if she had no arm and cancer, does that change the story?  If she had an arm and cancer does that no longer make her disabled?

I went to high school with a guy named Ram Gordon who is now a cardiologist. He has a great post today on the New York Times site in which he reminisces about watching ER with his roommates as a med student 15 years ago.

His post made me remember when as a kid and my whole family sat glued to St. Elsewhere on Wednesday nights, watching Mrs. Huffnagle’s death by hospital bed. Oh, Ed Bagley Jr. before his eco-trip. Oh, hot Denzel in his youth.

But I’m now jealous (only slightly) of my friends who have had a great Thursday night escape with what seemed like one of the few quality TV shows on air. Since my cancer diagnosis, I’ve tried watching ER many times, but couldn’t stomach the palpable reality of the hospital. It was as if I could smell the rubbing alcohol wafting off the screen. Great TV to one is post-traumatic stress to another.

Last month I rented Synecdoche.  I liked Charlie Kauffman’s other twisted and addictive movies, Eternal Sunshine of the Spotless Mind, Adaptation, and Being John Malkovich. But when Kauffman’s wacky brilliance mingled with the plot a theater director suffering from strange symptoms that shut down his autonomic body functions, it flashed me back to my life as a 27 year-old choreographer, when docs spent a year and a half trying to figure out what was wrong with my body before I received my cancer diagnosis.  Those were the days when I’d fall asleep in the morning on my cold bathroom floor after brushing my teeth because I couldn’t make it back to my bed. I turned Synecdoche off after 45 minutes.

Are you able to watch movies and TV shows about hospitals and disease?  If so, what are your favorites and why?  Are med shows and flicks comforting in their familiarity or do they hit too close to home?   Has illness or being a cancer survivor made you squeamish or desensitized?