By Claire Levine
Bobby “Soxx” Petersen never lost his will to live. But early on in his illness he lost his music. And that may have been the most heartbreaking aspect of Bob’s fight with Lou Gehrig’s disease.
It was the music that enriched Bob and Teri’s lives during the last year and a half of his life. Support from volunteers at the Jeremy Wilson Foundation (JWF) and financial help from the Musicians Emergency Healthcare Fund kept Bob connected to his friends and his favorite music, as well as the material things that made his final months a little easier.
The technical name for Bob’s illness is amyotrophic lateral sclerosis (ALS). Its common name comes from revered first baseman Lou Gehrig, known as the Iron Horse for his strength and stamina, whose career was cut short by ALS.
Bob was diagnosed with ALS in early 2016. But Teri learned later that he had been struggling for months. A stellar guitarist with a lifelong love for the instrument, Bob had been able to play only the drums for months. The small muscles in his fingers were one of the first casualties of ALS.
Teri said, “It’s devastating, because it takes away control of your voluntary muscles – the ones that let you move, speak, swallow and breathe. Your senses and creativity remain, but they’re trapped inside.” To the end, Bob’s intelligence and humor showed through.
When Bob’s motor skills started to slide, so did the family’s income. Teri cut back on work to care for Bob, so even less money was coming in. And where they had once grown much of their own food, their gardening time grew limited, and they had to spend more money at the grocery store.
Jeremy Wilson and Bob had been friends from “the Satyricon days” and through eastside venues including the Laurelthirst, as members of Portland’s close-knit rock world. “It doesn’t matter how much time goes by,” Teri said, “they are all members of a big family.”
So it was a natural that Jeremy, JWF, and the entire community would step up. And as all recipients say, the gift of the foundation was more than just about money.
“I was able to get a small grant through the ALS Association, and it was helpful, but it didn’t mean as much as Jeremy’s help. Through JWF, we had the backing of an entire extended family. It was a godsend.
“They were immediately responsive and sincerely dedicated to doing whatever they could,” Teri said.
JWF paid for groceries, rent and basic supplies. Eventually they arranged for Bob to have a hospital bed and equipment to help him breathe easier as his muscles failed him.
Teri is grateful for the continued presence of Melanie Bobbett, a social worker who specializes in connecting people with long-term illnesses to public and private financial help. And one of the most important contributions was JWF’s help keeping people informed of what was happening.
“There were friends, collaborators and even family from across the country that we hadn’t seen in years. JWF volunteers spread the word – not only to get us financial assistance, but to make sure that people who wanted to spend some personal time with Bob had the chance,” Teri said.
Teri had to start scheduling visits because so many people wanted to talk, laugh and play music with Bob when he couldn’t leave the house.
“It was such a comfort to know that we could rely on Jeremy and the foundation. He would always call, even if it was just to check in.”
As the disease progressed, Bob had a desire to mix down some songs that he had been working on in the “Three Owls” home studio. He also wished to explore his thoughts about spirit, soul and afterlife with his fellow musician and good friend Kevin (Bingo) Richey. JWF arranged for Bingo to fly up from Southern California to help Bob compile the recordings while exploring the metaphysical questions that had become most important to him.
For Teri, “It was such a relief to us both, it was palpable.”
“The people who live in a world of art and music are different from most of us. Many people just clock in and out of a day job. For musicians like Bob, their occupation is also an all-encompassing love, the sum of their lives, all day, every day, awake and asleep.” It’s never about the money. But it is about friendship and love and commitment as much as it is about the notes they create.
The Jeremy Wilson Foundation and the Musicians Emergency Health Care Fund recognize the material sacrifices many musicians make to pursue their craft. They also build on that unique bond among musicians themselves and the community they have enriched with their gifts.