How Art Can Heal: the Radiation Therapy Story
My brother was diagnosed with an inoperable, malignant, naso-pharyngeal, tumor in 1996 - a few months from his 24th birthday. The doctors decided radiation therapy was the only possible hope and my brother received the largest doses of radiation permitted at the time. It was an intense ordeal that burned the insides of his mouth, nose, ears, and the entire length of his throat. It killed the tumor and my brother healed quickly - we climbed Mt. Tom in Western Mass (the steep side with the telephone poles for those who know the 413) only 3 days after his last treatment.
When my brother returned to his job as a welder in a large surgical tools plant, he was told that his condition has raised the rates for everyone and that he needed to drop it or leave. My brother told his boss to fuck off and walked off the job that day. He would be uninsured for the next 11 years. Even though I would pay family rates for years that allowed me up to 5 children, I had only one child and was never permitted to add my brother to my coverage.
The radiation forged on, and in 2002 his voice simply stopped working- it became a forced, harsh whisper. Soon after, the scar tissue that developed in his trachea shrunk his airway to the width of a pencil and he worried he would drown in his sleep. That was when we began recording poetry.
With what little voice he had left, we began recording him reciting his own poetry and creating accompanying sound-scapes. We dubbed ourselves ‘Radiation Therapy’ and recorded several albums worth of music and poetry. Yet his health was declining and his breath was increasingly labored. Eventually a doctor manipulated his emergency room shift and coordinated with my brother to perform a tracheostomy; because my brother lacked insurance, it was not possible to have the procedure done without bringing him to the emergency room.
He regained his breath, but the radiation forged on, ruining the nerves in his tongue and throat and taking his words all but completely. His left arm has withered because his muscle tissue has died and may not come back. Through all of this, we continued to record music. We released our fourth album as an instrumental memoriam to a loud, proud voice now gone. We explored visual art including hand art and digitally editing photos and videos.
For my brother, the effects of the radiation have driven him into near hermit-dom. He can’t speak, can barely hear, has a withered arm, a paralyzed tongue that prevents him from forming words and causes him to drool on occasion - all too much for a proud Leo who used to be an ardent socialite. But the art kept us going; it gave us, both of us, something to live and strive for. For 2 or 3 hours, once a week for 9 years, we met drank, laughed and created. On May 6th, 2011, we had our first show ever.
It was a first Friday gallery show including 45 minutes on stage performing instrumental improvisations while our altered home movies projected behind us. My brother’s excitement and participation in getting this show together was unlike anything I had seen from him in years. He is proud of his art and excited to share it. He cared about the show and looked forward to it so much. Creating art and feeling involved in life has made a big difference for my brother and we hope to have many more shows in the future.
We need universal health care, we need hope and love, and we need art and artists. These things can all add so much to a person’s life - particularly those who feel there is so little to hope for at all.
Thanks for reading and if you are interested:
Link to art gallery tour
http://www.youtube.com/watch?v=081NPSnh-HILink to our first stage performance ever
http://www.youtube.com/watch?v=ih36jNASeZMand a link to one of our ‘Memory Modifications’
http://www.youtube.com/watch?v=3dacR2GlaVU