Where the Music Dwells

The flute makes a lonely sound, its high, floating tones evoking a kind of ineffable sadness that rises over the accompaniment of other instruments.

It could have been the mood I was in that made me feel that way as I drove away from the small, dark apartment occupied by Steve Fowler.

He had given me a compact disc called “The Last Blue Sky” that I listened to as I edged through the blistering heat of North Hollywood on a cloudless Valley day.

Fowler produced the album and plays the flute in it. I became absorbed by its sound and imagined it came from someplace deep in the man’s soul where that sadness must inexorably dwell.

At age 50, living alone, Steve Fowler is a dying man. He suffers from amyotrophic lateral sclerosis, Lou Gehrig’s disease. It kills the body slowly while leaving the mind intact to monitor with agonizing awareness where destiny takes it.

In some ways, Fowler is the epitome of ALS. An accomplished musician in a family of musicians, he is reduced to listening to the sounds of his own music on tape while heartbreakingly aware that he will never compose or play an instrument again.

He will die with the music locked in him.

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I became aware of him when a friend sent me a eulogy Fowler had written for himself, its depth and beauty transcending illness to achieve a plane most writers never know.

Alternately bright with poetry and dark with reality, he writes of the Utah of his childhood, “a hundred miles of clear air across the Great Salt Lake to the blazing desert.”

He writes of his move to L.A. in 1975 as a stranger in a strange land until “eventually the leaves outside my window seemed to sparkle with the same intensity that they had in Utah.”

And he writes of his illness: “Now as I find myself slipping beneath the dark surface of a bottomless pool of suffocation and paralysis, I find . . . the onset of terminal illness brings to focus the essential meaning of otherwise abstract words--anguish, grief, loss.”

Fowler’s prose glows with an energy that ALS seems to give him. “Illness of this magnitude,” he observes, “is existentially exhilarating.”

As I sat with him in his small apartment, leaning close to hear his muffled words, I could feel the frustration of a man with so much talent trapped in a body whose functions he was gradually losing.

Frail and gaunt, the mask of a ventilator covering his nose, he survives by will and by the air pumped into him through a machine. Without that and without hired assistance, he says, he would be dead in an hour.

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ALS is a degenerative nervous-system disorder that causes muscle wasting and paralysis. More than 5,000 Americans are diagnosed with the disease each year. Its victims usually die within two to five years. There is no cure.

Fowler was diagnosed in March 1997. “I was on the road with a band,” he says as we sit together in his North Hollywood apartment. “I went to pick up a beer and dropped it. I knew something was wrong.”

As I listen, I become aware of how much life there is around us in contrast to the frail man I am interviewing. Far off, a dog barks. Voices from passersby drift into the room. A car horn sounds. Outside, roses gleam in the relentless sunlight.

“My doctor sent me to a neurologist,” he says, gesturing slightly, barely able to move his hand. “He tested me and said, ‘I believe you have ALS.’ I sat there unaware of what that was. He said, ‘You have Lou Gehrig’s disease. You’ll die within three years.’ ” Pause. “It wasn’t a great day.”

Dying isn’t the best thing we do. But Fowler faces it with an equanimity of spirit that is both remarkable and elevating. He isn’t anxious to die, to fly “to that destination of inner peace and clarity of self.” He clings to the hope that an ocean of research being conducted around the world will lead to a cure that will save him.

“I would like to play again,” he says, his voice and his hope both filtered through the mask of the ventilator. “There is music in my soul.”

But if a cure doesn’t come? “If I am unable to stay,” he writes in his eulogy, “I have hoped at the very least to escape back to that spellbound world that defined my youth, where I can lie on my back in the cool shade of a summer day, chewing on an impossibly sweet blade of grass, smelling the purity of summer in a branch of sage.”

The memory of Steve Fowler burns in my memory. His written words resonate. Driving away, I listen to the tears in his music, the lonely cry of his flute, and I feel a great sadness.

Al Martinez’s column appears Sundays and Wednesdays. He can be reached online at al.martinez@latimes.com.