San Francisco Chronicle - (Sunday)
Contractor gets aid to keep home after onset of disease
Until about a year and half ago, Gene DeSmidt was thriving. An accomplished woodworker and general contractor, the Oakland man earned accolades for rebuilding Berkeley’s famed Chez Panisse restaurant after a fire and constructing a conference center at thenMills College. He was, he said, enjoying a full life.
“I’m a bachelor with girlfriends, I had a lot of high-quality, high-intensity work, I was a musician writing songs, I was a photographer. I was living my best life at 76,” he said. “Then — boom — something crept up behind me and hit me in the back of my head.”
What smacked DeSmidt, now 78, was a little known neuromuscular and autoimmune disease known as IBM — inclusion body myositis — that has no treatment and no known cure. IBM, whose best known patient is rock star Peter Frampton, is a progressive disease that weakens the muscles.
DeSmidt was diagnosed with the disease shortly after he suffered what he called a minor stroke. He was climbing the stairs to the living area of his East Oakland loft carrying two bags of laundry when he fell, knocking his head against each of a dozen or more steps as he descended.
He survived the fall but went to his doctor and told him that his legs had been growing increasingly weak. The doctor sent him to a neurologist, who sent him to a specialist, who diagnosed him with IBM.
At the same time, DeShis
Founded:
Total cash distributed: More than $192 million
Number of households helped: More than 180,000 (approximately 5,000 individuals and families annually)
Total cash distributed to food banks: More than $31 million
Number of annual donors: Approximately 7,500
For more information and to make a donation: www.seasonofsharing.org
midt was also diagnosed with vertigo, and he has had two other strokes, which have weakened his left side.
One of the biggest dangers of IBM, according to medical experts, is falls — and DeSmidt has had five major falls in the past year and a half, he said.
IBM has affected DeSmidt most in his legs, weakening them to the point that he can’t walk more than short distances — and forcing him to quit his work.
“I really couldn’t carry on my business,” he said. “Going up to a client’s house in a walker is not a good sign.”
DeSmidt has an impressive and eclectic resume. In addition to the Chez Panisse and Mills College construction, he also did work at the remote Tassajara Zen Mountain Center and hot springs in the Ventana Wilderness in Monterey County, as well as numerous houses in the Bay Area. He described
style as “incorporating Western building techniques with Eastern sensibilities.”
Among his more unique jobs was a pyramid with a glass and copper top used for meditation, DeSmidt said — on the roof of the Mill Valley home of the late Marty Balin of Jefferson Airplane and Jefferson Starship fame.
“I really liked to do interesting jobs for interesting people,” he said.
Despite being in his 70s, DeSmidt said, he had no plans to retire. He loved his work and planned to keep at it until he no longer could. That time arrived unexpectedly.
“I wasn’t prepared for it in any way, shape or form,” he said.
With a meager income from Social Security and a small pension from some of his music he wrote or performed under union contract, DeSmidt found himself falling behind in his rent payments. While his landlord was understanding and wasn’t pressing him to pay promptly, DeSmidt said he felt the need to catch up.
An internet search for rental assistance yielded a reference to the Chronicle Season of Sharing Fund, he said. He contacted an Alameda County caseworker, Marisol Pinto, who works with the program. She helped him apply for help from Season of Sharing, which sent his landlord a check to make a dent in his backlogged rent.
“It let me reestablish that I am a trustworthy person,” he said. “I couldn’t be more grateful.” DeSmidt’s home sits in a small collection of lofts that’s an island of serenity and creativity — a community of artists, musicians and other creators — in a neighborhood populated by people living in RVs, trailers and trucks on the streets, piles of rubbish and discarded mattresses and furniture.
DeSmidt’s shop, where he worked on designs and woodworking, occupies the lower level of his loft with his living quarters up two flights of stairs. He said he loves the loft and the community of people who keep to themselves but help each other.
He said he’s always been used to paying his bills and simply working hard and pushing to solve any problems life threw his way. With IBM, he can’t work his way out of the problem — a source of frustration but not anger, he said.
DeSmidt says his sudden fall from self-reliance should serve as evidence that it can happen to anyone.
“A lot of people would think I’m a person who doesn’t need help,” he said. “I’m privileged, I have all these things going for me. But I went into a black hole. I was in a really bad place.”
He credits Season of Sharing for helping to pull him out.
“It really gave me a moment to breathe and not worry for a minute,” he said. “It really helped my spirits.”