Living with disease, one has good days and bad days. Sometimes it's easy to forget that one is living with disease when a whole lot of good days make you forget about the bad. But every once and awhile one comes along to make you remember. A reminder that something is living in your body, eating away at who you are, screaming from deep inside as David Wojnarowicz screamed :
"THERE IS SOMETHING IN MY BLOOD AND IT'S TRYING TO FUCKING KILL ME!"
Memories that smell like Gasoline
(San Francisco: Artspace Books, 1992), 59.
David Wojnarowicz remains to this day one of the few voices I found after coming out of the hospital that spoke in a manner I understood. He felt what I was feeling and he spoke about it, sometimes screaming about it, as it seemed the only way to express his frustration about being sick. Bad days bring back all those feelings. Sitting on the toilet all morning, being a slave to one's body, being tied to one's medications and to a particular set of circumstances because of pills and timing reminds each of us what it is be sick. To be consumed by a disease. We have to rise above it and try and not let the disease define who we are. To become more than a body with a disease, to become a person who is not defined by sickness but rather someone who happens to be sick. But bad days make it so hard. Sometime anger, frustration, self-pity and fear take on a weight larger than deserved. Sometimes it is hard to see past the walls imposed by the confines of our bodies. What Elaine Scarry in The Body in Pain calls the "incontestable reality of the body."Pain can become so consuming. So world destroying, making each us so small and insignificant, making the simplist of tasks difficult. My own way of dealing with such days is to channel the energy I have on good days into forgetting about the bad. Into reclaiming a life lived in the most "normal" manner possible, but never forgetting how pain can at any moment cause a life to come to a halt. How pain causes each of us to withdraw into ourselves to become defined only by our bodies by the confines of the self. But also how it enables each of us to reach outside of ourselves to imagine the pain of others. Pain is constant in the lives of all of us and understanding its relationship to ourselves, our identities can enoble our attempts for empathy and compassion. My own work has been fascinated by the inability of art to describe pain. To make others understand its importance. In the face of the indescribable to always make an effort to describe it. To give the formless, form, shape and substance. It is a fascinating concept that makes my own experience more manageable.