Music, hope and joy in just one finger

Limited by ALS, Steve Senderoff composes pieces via computer

Courtesy of Steve Senderoff
“I don’t think I’m dying from ALS," Steve Senderoff says, "I think I’m living with ALS.”
By JENNIFER MARIE ZEBERKIEWICZ
Special to The News Journal
11/10/2005

When ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease) took away almost all his muscle movement, Brandywine Hundred resident Steve Senderoff found another way to fulfill his love of playing music -- using a computer.

"Life without music is completely unthinkable," Senderoff said. "ALS closes traditional doors. I look for doors and windows ALS hasn't closed."

Senderoff said his can-do attitude can be attributed to two things: the encouragement of his wife and the caring staff of the ALS Hope Foundation.

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Musician and now composer, Senderoff shared his work "Doors and Windows" Saturday at the Kimmel Center in Philadelphia.

Senderoff has been a musician all his life. At age 6, he learned the clarinet.

"My love of music started in 1959 when I went to see the Cleveland Orchestra perform," he said. "It was so exciting that I had to learn to play music and began the clarinet a few weeks later."

Senderoff has played classically for more than 30 years, and in the 1980s, he got interested in traditional Appalachian music -- guitar, banjo, fiddle and mandolin -- and other folk music instruments. In the '80s and '90s, he performed in dance bands and as a soloist in and around the Philadelphia area.

In 1997, signs of ALS began to surface. Senderoff said he slowly lost his ability to play the instruments he loved.

"ALS started to take away the muscles in my arms and hands. I first had to give up the guitar because the strings were too hard to push down," he said. "Then the banjo became too heavy. Eventually, I couldn't play the ukulele. Finally, I started having trouble breathing and couldn't play the harmonica anymore."

The musician who once was able to just pick up an instrument and instantly learn to play it on his own now was losing his big joy in life. He thought, "What was the one musical instrument I could play with just one finger?

"Then an occupational therapist at the ALS Hope Foundation told me about all the advances with MIDI -- musical instrument digital interface," he said. "Being an engineer, I was very skilled with computers, too, so a new door opened up for me."

Senderoff said MIDI allows humans to interact with computers in the same way a human interacts with musical instruments. Senderoff now reads, writes music, studies music theory and conducts using one finger. He said he hears notes in his head and he writes them down via the computer, and the software can play the music back for him.

"I experiment using graphics and mathematical formulas to turn into music," he said. "The computer has software for that, too. It's so surprising what wonderful things they keep inventing. And today, most musical recordings and productions are done by computers anyway."

Senderoff's wife, Trish Vierling, said his passion for music was very attractive to her.

"When I met him, music was integral to his personality, and it still is," she said. "I try to support any effort to keep music in his life. We attend festivals or get new software. It is extremely important to keep up with his interests."

"I admire the strength and courage he has shown in the face of this illness," said Terry Heiman Patterson, MD, Senderoff's physician and co-founder of the ALS Hope Foundation.

"He's composed yet another piece, and he's made it represent the disease. He tries to make a difference, to bring attention to the illness and express himself and his illness. He's holding his feelings open for the world to see, showing a lot of courage and strength He's inspiration to all of us."

Senderoff says he is doing more music now than when he was fully able.

"I'd still give anything to be back 15 to 20 years and be healthy again," he said. "But I can't, so I have hope. ALS is powerless against hope. And in a way, ALS led me back to music. I have the courage to learn new and different things, and I don't think I'm dying from ALS. I think I'm living with ALS."

His composition "Doors and Windows" is an impressionistic piece in which the individual sections represent the unique world of a person living with ALS. It encompasses many emotions he said he felt -- fear, anxiety, excitement, etc. The nine-minute piece includes themes and sounds such as the complex, conflicting emotions he felt at diagnosis to the rhythmic sounds of heartbeats and respirators when ALS made him lie immobile and finally a triumphal ending, suggesting the coming final victory over this disease.

"I'm just very thankful that I learned art and music education in high school. That was knowledge. [The] computer is my tool. And together knowledge and tools equal an open door, and I think 'Oh boy, I'm back in business.' "

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