Daniel Rubin: As time ran out, 'he got it done'

Josh Winheld was 8 when he picked up a pamphlet about his "problem," as they called Duchenne muscular dystrophy in his household, and learned he was going to die young.

The boy had two thoughts. One, fear that his parents would be angry because he'd read something he thought he wasn't supposed to see. And two, disbelief.

At the time, life expectancy for people who inherited the disorder that wastes the muscles was about 20 years.

"How could I die?" he wrote in his autobiography. "I feel perfectly fine. That's not going to happen to me."

He was the boy on the posters of the Southeastern Pennsylvania Muscular Dystrophy Association that year, 1986. In many ways, he was the face of Duchenne all his life.

Against the odds, Josh kept pushing, becoming the first boy with his disability to be mainstreamed through the Cheltenham schools, graduating from Temple summa cum laude, lecturing doctors and nurses across the country about living with Duchenne, writing a book, blogging, struggling to complete his master's thesis before his body failed him.

His body finally gave out Dec. 5 at Elkins Park Hospital. It was a snowy day, like the day he was born in that same building, 31 years earlier.

"He was a gift to us then," says his father, Mike. "It was time for the gift to be returned."

I first heard from Josh in early 2008 after I wrote a column about how inaccessible the city is for those in wheelchairs. He was studying the subject for his thesis, he wrote, and invited me to visit.

At his parents' house in Cheltenham, I realized how much sweat had gone into his e-mail. Since losing control of his arms, Josh typed using a reflective pointer attached to his headset. He'd aim at a virtual keyboard on his computer screen until the correct letter appeared.

He wrote his 75,000-word book using that system and voice-recognition software that never adapted to the inflections in his voice. He'd grow frustrated, curse, then yank the swear words from the manuscript.

Josh became my Facebook friend afterward. He'd weigh in after particularly tough losses by the Phillies. After the 2008 World Series win, he was ecstatic.

Ruth Zoe Ost, director of Temple's honors program, says his love of baseball stats was reflective of a scholarly brain. "What a character," she said. "What a celebrity student he was in so many ways."

Lauren Rosenthal talks about how Josh interviewed her and many other childhood friends to refresh his memory and gauge their impressions of him as a boy.

She never knew until reading the book how much he'd struggled to put on that brave face. Over 353 pages, Worth the Ride shares the bumps and all, telling of his fears, embarrassments and regrets, his sexual desires and emotional longings.

"It was the first time he really talked candidly about so many of the things that were challenging for him," says Rosenthal, an artist and bookseller. "So many of the feelings he hid underneath this projected self - that he was just like everyone else, that he was always fine, always cheerful and positive, never a burden."

Mike Winheld says his son struggled epically to finish his work on his thesis for the geography and urban-studies program. Twice this summer, he was rushed to the hospital.

Josh seemed aware the end was nearing and was anxious about going to sleep, his father says. "I don't know if he was afraid of dying, maybe he was."

Yet Josh was able to turn in revisions on his thesis last month and was waiting to hear whether it was accepted when he went into the hospital for the last time.

At the funeral, attended by hundreds, some of his professors invited the family to his graduation in February. He'd earned his master's.

There's an image Mike Winheld holds in his mind.

He was in the hospital when Josh's heart failed. The doctors were unable to resuscitate him, and Mike asked to stay awhile in the room with his son.

"All of the tubes and IVs and needles were gone. His muscles actually relaxed a bit. And he appeared really normal. It was the first time in a while I saw him at peace.

"It took everything out of him to do it all, but he did it. He had certain things he needed to accomplish. He got it done."