Woman makes long-delayed CD before ALS silences her singing

Pam Lyskawa

Associated Press

GRAFTON, WIS. Pam Lyskawa was having her picture taken and she needed something to smile about. "Stand over there and make me laugh," she told her 11-year-old daughter, Kim, who promptly planted herself behind a newspaper photographer, stuck out her tongue, waggled her head and crossed her eyes, trying to coax a giggle from her mother. Until this year, smiling had never been a problem for Lyskawa, former cantor and soloist with the choir of Divine Word Catholic Church in Cedarburg.

But last summer she was found to have amyotrophic lateral sclerosis (ALS), an incurable degenerative illness that progressively affects various muscles of the body. Since then, the disease, commonly known as Lou Gehrig's disease, has affected her voluntary muscle control. The 40-year-old Lyskawa, who lives in Grafton, can no longer walk, has difficulty moving her hands and fingers, and her face remained near-expressionless despite a photographer's proddings on a recent afternoon. "It's hard to make myself smile," she said. "When I do, it looks really fake. But the kids can make me laugh. That's involuntary."
Gift of song One of her favorite voluntary activities, and for which she had a great talent, was singing. For 13 years, Lyskawa, a 1979 graduate of Homestead High School in Mequon, was cantor at Divine Word and at St. James Catholic Church in Mequon for 10 years before that. Knowing that she would lose that ability, Lyskawa and friends recorded a compact disc of inspirational music last winter.

The CD was completed in July and is on sale through a foundation set up by Lyskawa and her husband, Don, to benefit ALS patients. She and Lana Schumacher, choral director at Divine Word, had for years talked about recording a CD of inspirational music. "But we let it slide because of our workloads; we just never had the time," Schumacher said. But in July 2000 they decided to make time, while driving home from Madison, where Lyskawa's diagnosis was confirmed at University Hospital and Clinics. "It was a very sad day. The initial shock was devastating," said Schumacher, who accompanied Lyskawa and her husband, Don. "We decided on the ride home to do the CD" and fill it "with music that touched her heart," Schumacher said.

The recording took place in December, with most of it done in a single session "and then we sang a wedding in the afternoon," Pam Lyskawa said. Lyskawa remains cantor at Divine Word, but her voice began faltering. She remained in the church choir through Easter, by which time speaking, and even breathing, had become a problem. She now can't sing. "Singing has been something that was an expression of me and of who I am. I feel like a part of me has died," she said. "It was like breathing for me. I miss it tremendously." For Lyskawa, the CD represents a legacy. "First, I want to share a gift that touches hearts and enriches lives with the word of God," she said. "Secondly, I want to raise awareness about ALS and get the message out." The Lyskawas formed the Prayers and Miracles (PAM) Foundation through which to sell the CD.

The company where she works, Marking Services Inc. in Milwaukee, paid for the CD's production so that all proceeds from its sale could benefit the ALS Association, Lyskawa said. She's been with the company for eight years and is a senior sales representative. Her children -- Kim and Tony, 15 -- have taken her disease in stride, she said. "This isn't easy, but we're doing pretty gosh darn good. You never think something like this could happen to you. I guess that was the most surprising thing about all of this -- that it happened to me."


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