How Art Can Heal: the Radiation Therapy Story

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-HI

Link to our first stage performance ever http://www.youtube.com/watch?v=ih36jNASeZM

and a link to one of our ‘Memory Modifications’ http://www.youtube.com/watch?v=3dacR2GlaVU

He finally got approved for SS disability a couple of years ago. Not for his voice, ears, stomach tube, or trach, but because of his withered arm - the symbolism of that disgusts me.

your love for your brother shines through and makes the unbearable easier..

There was an 'Art Therapy' group when I was just finished chemo.. and we sat with huge pieces of paper and simple poster paints..

We talked and laughed and cried while drawing with the help of an art therapist.... it didn't matter how good the drawings were..

It was the release of emotion..

Hugs from afar... and best of luck to your brother and yourself..

And thank you for posting...

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

He went through a strange self-destructive/indestructible phase that involved a lot of alcohol, cigarettes, and raging depression - but every week we would pull it together and get a track down. The notion of having a legacy did a lot to salve the potential of dying. He was so close for so long.

*humbly*

through the tears. your story is very touching. thanks for sharing.

It's been a long crazy road, but one adapts and finds philosophy in things, I guess.

Thank you for your kind words.

There is too little beauty, too little hope, too little love and compassion in this world, and don't EVEN get me started on universal health care.

What a difference you've made for your brother. I wish both of you much more time together to create your art.

while I, and my employer, paid the family rate for insurance I could not use to the fullest (as far as number of covered individuals). The reason companies charge the same price for 'any' sized family and my brother was excluded are 2 sides of the same argument for single payer universal.

Thank you for reading, sharing, and understanding.

We are hoping for a medical MJ prescription to help with his appetite (feeding tube - he chokes on regular food and goes long periods without eating.) and arm pain (withering muscle tissue) soon. My friends are encouraging me to take him to Phoenix to sort it out.