Gerry Maciuba gets by, with a little help from his -- book-loving -- friends.
Maciuba, owner of the Paperback Trading Post on Seneca Street, has muscular dystrophy that has become so severe he can't move his arms or legs. He needs help eating, bathing, dressing and breathing.
Still, he's in his shop five days a week, all day, chatting with customers and tracking the book orders that pour in via the Internet -- even though he long ago lost the ability to type on a keyboard.
How does Maciuba, 58, do it?
With the help of a small circle of dedicated friends -- who are also dedicated readers.
"I read everything," said Debbie Barr, a West Seneca resident, with a laugh. "So it's an awesome deal for me."
Maciuba pays his five helpers -- ranging in age from a teenager to a 76-year-old -- in stacks of paperback books.
In return, they each come in to the Trading Post for a few hours a week -- some on weekdays, some on Saturdays -- to help him out with all the tasks of running a small used-book business: sorting and shelving books, checking e-mailed orders, packing and shipping books and running errands.
"I'm comfortable, I'm able to survive," said Maciuba, who has owned the bookshop for 30 years. "So I'm very happy with that."
All told, Maciuba ends up with about 15 to 20 hours of volunteer work time per week, under the system. That's the rough equivalent of a part-time employee -- and, Maciuba said, it enables him to keep his shop open.
"This is a very small-scale operation," he said of the jam-packed shop, which contains 30,000 titles.
Nevertheless, by putting his store online -- at www.ptpbooks.com and through sites like alibris.com and abebooks.com -- Maciuba ships books all over the world.
His helpers include Shannon Berkel of Blasdell, a college student; Joanne Zdziarski of Blasdell, a retired government worker; Alice Forbach, a retired teacher's aide; and Debbie and Kurt Barr, a married couple who both work as accountants.
All of the helpers -- avid readers -- got to know Maciuba through his shop.
"I was here all the time," said Forbach, a Tuesday regular, who takes mysteries from the shop as her "payment," but then usually brings them back for Maciuba to sell when she's done reading them. "I like reading. I don't watch a lot of TV."
"I think I'm helping Gerry," Forbach added. "I think we all feel that way."
Debbie Barr, who grew up in South Buffalo next door to the Trading Post and now comes on Saturday mornings with her husband, Kurt, to help out, also met Maciuba because of her love for reading. Now she helps him handle sorting and alphabetizing, and Kurt tackles the store's online operation. "We like to say, I'm receiving and he's shipping," she said.
Barr says she still takes home lots of books from the shop.
"My husband calls my side of the bed at home 'Paperback Trading Post South,' " she joked.
Maciuba's wife, Rose, was his main helper until several years ago, when she injured her back. Since then she's had five back surgeries and has become unable to handle the physical exertion of caring for Maciuba -- whose health has declined steadily in that time -- and running the shop.
Rose Maciuba said the volunteer helpers keep Maciuba independent and positive.
"He needs to have the store open. That's his reason to get up every day," she said. "He needs to have that store open, no matter how much pain he's in. It's really good for him -- it gives him something to look forward to every day."
Maciuba, who grew up in Depew, was born with muscular dystrophy. His mother, Sophie Maciuba, was diagnosed with the condition at age 41. She died in 1991.
Muscular dystrophy, which is inherited, is a genetic degenerative disease which destroys the ability of the body's muscles to function. The "limb girdle" form of the disease, which is the type Maciuba has, hits especially hard at the muscles in the arms, shoulders, hips and legs.
Over time, Maciuba said, he has seen his limbs degenerate.
As a young person, he walked on his own, although in school he struggled because he wobbled when he walked and ran. By his 20s, he needed a cane, then two canes. In his 30s he moved with a walker, then after about 10 years of that he needed a wheelchair -- a manual one, which he could still manage with his arms.
Today, he's in a motorized wheelchair -- an old one that he's had since 1999, and that badly needs replacing. He requires feeding tubes to eat, oxygen at night, and aides come to help him get up and dressed in the morning.
"This year he's really gone through a lot," said Rose Maciuba, who met Maciuba when she was working as a nurse to his mother during her final decline. The couple married in 1990.
"But he's being so independent," she said of her husband. "What's really hard for me is to watch him deteriorate and not being able to do anything about it."
For Maciuba, the progress of his condition has made him realize the importance of trust.
For instance, he said, the reason he chose the helpers he did is because he needs to have people around him he can trust with his safety and financial security.
"With the shop being in my home and my being incapacitated, there was a big trust factor," said Maciuba, who lives with Rose in a flat above his Seneca Street storefront. "There are books in my attic, and the (helpers) have to go through my apartment to get them. I had to absolutely trust them."
Zdziarski, a retiree, who comes in on Mondays and Tuesdays, said she's pleased to be able to help out at the Trading Post.
But, she said, she herself gets a lot out of the time she spends there, too.
"Time just slips away from me there," Zdziarski said. "I kind of miss it when I can't go."
And -- jokes about paychecks masquerading as big bags of books aside -- Maciuba said he knows the real reason why his friends help him out.
"It's not me compensating them with books," he said. "They do it out of love."