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'I'm Thankful for My Illness' - Dying With ALS

05/06/2014 14:03 BST | Updated 04/08/2014 10:59 BST

"I'm thankful for my illness," said Steve one day. I was shocked.

Steve was a patient with ALS (Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease), one of the most awful illnesses I've ever seen in my work as a hospice music therapist. Patients with ALS gradually lose their abilities to use their bodies, and eventually their breathing will be affected, resulting in death. But their minds remain sharp until the very end, so they're fully aware of their declining conditions. I don't know if there is any other illness as frightening and cruel as ALS. That's why Steve's comment surprised me.

He was a successful businessman in his early 50's. Only a few years before he was diagnosed with ALS and was no longer able to walk or use his hands. He was lying in bed all day now, and breathing was becoming difficult each day. So I often played Irish music on my Celtic harp for relaxation. While listening to music, Steve would close his eyes and begin breathing slowly. At the end of each song he'd say, "That's a nice song." As an Irish American, songs from Ireland must have given him comfort.

When Steve was young, he used to work in Japan. He fell in love with a Japanese woman, and they had a daughter together. Their brief marriage ended in divorce, and he raised his daughter on his own. Because I'm Japanese, Steve often wanted to talk about Japan. During those times I used Japanese songs for our sessions. Through the course of therapy that lasted for several months, he shared with me his thoughts about his condition and the meaning of life.

"The reason I'm thankful for my illness is that it's helped me realize what's most important in life. All my life I focused on becoming successful in business. I have three cars in the garage, a big house, and money in the bank, but they mean nothing to me now. If anything, they're causing a family dispute." Steve laughed.

"Those are THINGS. They are not important... I wish I had spent more time with my daughter..." He held back his tears.

"Everyone is concerned about things like how much money you make or which university you went, but what's really important is whether you're happy. That's all that matters, I think. And I finally realized that now." He turned to me with a serious face.

Steve was right. When we die, we don't take with us what we've gained. We only leave behind what we've given. I had heard other patients say similar things to me before, but Steve was perhaps the first person to articulate this so clearly.

One day I brought a Japanese song called "Sen No Kaze ni Natte (千の風になって, A Thousand Winds)." The song was based on an English poem, "Do Not Stand in my Grave and Cry," so I first read the poem to Steve in English.

Do not stand at my grave and weep,

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on the snow,

I am the sunlight on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning's hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry,

I am not there; I did not die.

(by MaryElizabeth Frye)

He said, "It's a nice poem." As I began singing the song on the harp, he closed his eyes. When the song ended there were moments of silence.

"Could you...sing this song at my wake? I'll be so honored if you can do that." Steve said. I told him that I certainly could. He smiled and closed his eyes again.

A few months later Steve died. At his wake where I sang the song, I met Steve's daughter. She was in tears when she said that after Steve became ill, they spent a meaningful time together.

Did Steve become "thousand winds"? His words still come to me often.

"What's most important in life is happiness."

(Click here to listen to the video, "A Thousand Winds")

All identifying information has been changed to protect peoples confidentiality.

More from Yumiko Sato Music Therapy Blog:

Hearing is The Last Sense to Go

Music in The Moment of Death

Do People Know When They're Dying?