Daniel Rubin: Aspirations like any other

Josh Winheld was reading the columns I wrote about the troubles disabled people have getting around, and thought he might add perspective. He's a grad student in urban studies, writing his thesis on access.

By e-mail, he directed me to a blog entry in which he'd recounted nearly killing himself and his nurse trying to board a SEPTA train.

Maneuvering into passenger cars requires that Winheld make a sharp turn with his powered wheelchair while crossing a threshold. One day last summer he got stuck, dislodging his armrest. His nurse, Frank Howard, tried to help.

But by accident, Winheld hit the joy stick, throwing the chair in reverse at ramming speed, out of the car and into Howard, a big man . . . just as the train started moving.

The lesson: "If you feel a little self-conscious while people are looking at you, use that attention to do something impressive."

I loved Winheld's sense of humor. What I didn't realize until meeting him was just how much effort must go into writing his e-mails.

First, Howard or another of his nurses must position his headset so a reflective dot on the tip of the microphone points at the computer screen. Then he aims toward a virtual keyboard on the screen, and when he holds his gaze long enough, the character he's pointing to appears on the screen. It's called SmartNav.

He's a speedy typist for someone who can barely move his hands. And a prolific one. Recently he finished writing a 75,000-word book.

By month's end he expects to be celebrating the release by Little Treasure Books of

Worth the Ride

, a chronicle of his life with Duchenne muscular dystrophy, which has been sapping his strength since he was 4.

It's a guide, he says, for families grappling with the disease, which Winheld matter-of-factly says is fatal. At 29, he has lived with it for a long time. He says he also wanted to celebrate the things his parents did right - "they treated me like a normal child" - and show others how much someone with Duchenne can do.

That would include attending a senior prom, obtaining a college degree, taking trips to treasured baseball parks and great American cities, which are his passions - in part because once he's there, he can get around on his own. He loves Chicago, Boston, New York. Especially Philadelphia, except the no-championship part.

He wasn't sure how well he would be able to discuss matters such as sexual desire, depression, body function. But he knew the story needed it; he was trained in nonfiction writing at Temple, where he graduated in journalism summa cum laude.

For precision, he mined 500 pages of his medical records, which allowed him to detail what his body has gone through. Writing about major medical interventions wasn't difficult - the spinal fusion surgery, the defibrillator implantation, the tracheotomy.

"Only afterward," he said, "would I read what I'd written and get very emotional."

The book, like his Winheld's World blog, opens a window into the mind of a sensitive, hard-charging soul who happens to have used a wheelchair since age 10.

I visited him at his family's home in Cheltenham on Friday, the day after he got a good report from his cardiologist. "It's the heart that usually kills someone with Duchenne," he said. His heart is no worse than it was last year - an accomplishment that called for a trip to D'Alessandro's in Roxborough.

"I did what every good cardiac patient does to celebrate news like this," he blogged. "I ate a greasy, artery-clogging, but delicious Philly cheesesteak sandwich!"

It was just him and Howard and Zoe the dachshund at home. Winheld was scooting from room to room, speaking over the steady purr of his ventilator, which hangs from the back of his power chair like a jumbo laptop.

Every half-hour or so, nurse Howard leaned in with a glass of water, offering the straw to Winheld's lips.

Voice-activation equipment in his room puts Winheld in command of the television, the radio, the phone, even the position of his bed. He gives a demonstration, the electronics around him turning off and on like some Rube Goldberg contraption.

"If that machine learns suction and how to give meds," Howard says, "I'm out of a job."

Not likely. Winheld keeps his companions busy. With the book about to be published, he's focusing on another goal - completion of his thesis. He says these goals are essential to his mental health. Time is precious.

He wonders whether he will have the opportunity to move out of his boyhood house. And he longs for a woman to love and be loved by.

"Everyone wants to meet someone you can spend your life with. That's the last goal. I just want what everyone else has."