A Latter-Day Gehrig Survives, and He Demands to Be Heard
Gordon M. Grant for The New York Times



This week, Chris Pendergast will take another of his long wheelchair rides to raise awareness of A.L.S.


By PETER APPLEBOME
Published: May 4, 2008
STONY BROOK, N.Y.

For a man so active, a blur of energy climbing mountains, running fishing-boat charters, fixing cars and moving, always moving, it began as weird glitches in the gears.

There were twitches in the eyes and hands, spasms and cramps in muscles he didn’t know he had. Then it got worse. Chris Pendergast, then a 44-year-old elementary school teacher from Miller Place on Long Island, who could hike forever, would be walking across the lawn and then fall on his face as if some microscopic shift in terrain were too much for him. There were tests and more tests, and when he received the diagnosis on Columbus Day, Oct. 13, 1993, he had an obvious question.

“Well,” he asked the doctor who had just told him he had amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, “what’s the treatment?”

There wasn’t any response, so he repeated the question, figuring he hadn’t been heard. But it didn’t take him long to figure out that the silence was his answer. There was no treatment, there was no cure, and as he soon learned, he would almost certainly be dead in three to five years.

Even Mr. Pendergast has no idea why he’s alive today.

Luck of the draw? His own manic, stubborn will? Divine intervention? Take your pick. But if sometimes sickness leads you into the light as well as into the dark, who could ever invent the journey that Mr. Pendergast has taken since he was given his prognosis?

Last week marked an anniversary forever etched in Yankees lore — May 2, 1939, when Gehrig, his strength ebbing by the day, took himself out of the lineup after 2,130 consecutive games. He announced his retirement on June 21, after receiving the diagnosis of A.L.S. He gave his speech proclaiming himself “the luckiest man on the face of the earth” on July 4. He died on June 2, 1941.

Mr. Pendergast will mark an unlikely anniversary of his own on Sunday. Eleven years ago he came up with an idea that horrified family and friends, who soon realized that Mr. Pendergast was so stubborn he was actually going to do it. He set out from Yankee Stadium on a circuitous, 350-mile, intricately mapped, 16-day route that would take his motorized wheelchair to Capitol Hill to call attention to the need for more A.L.S. research and immediate access to Medicare and Social Security benefits.

He did that ride for two more years. Since 2001 he’s made an annual wheelchair ride between Montauk and Manhattan. This year he plans to make the trip again, with perhaps 10 other people with A.L.S., who will do parts of the ride with him over the next seven days. Every year someone says that maybe it’s time to stop. Every year he says, no, it’s not. His foundation, Ride for Life, has raised $3 million for research and patient services.

Sitting in his wheelchair at Stony Brook University Medical Center, speaking through an amplified microphone, Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in — one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

“They say the squeaky wheel gets the grease, but since there’s no surviving constituency for A.L.S., there’s no squeaky wheel,” he says. “The patients die quickly and die in the most difficult environment, and the families just close the book and walk away. There’s no survivor to rally around, no celebrations, there’s just heartache. The disease lingers generation after generation, and every five years another poster disease comes along that gets the attention and massive research money, while this one keeps killing and killing, 6,000 people every year.”

He adds: “The answer isn’t to take money from your group. I don’t think different disease communities should be scrapping for pieces of the pie. I would like to have a bigger pie.”

Sometimes all the money in the world doesn’t buy a miracle. After all, before there was Chris Pendergast, there was Lou Gehrig, whose name turned A.L.S. from an unpronounceable medical oddity to a household name. And there is still no cure and precious little progress.

But sometimes miracles do happen, whether it’s his 15 years with the disease, those 11 years of improbable voyages, seeing his first grandson born a year ago, the way he’s transferred all his stubborn manic energy to this stubborn, manic cause.

“Thinking back to 1993, given the choice between being cured then or being where I am now, I don’t know,” he said. “I think I might choose where I am now, because of the joy and peace it has given me.”

The amplified voice was quiet for a moment.

“That being said, I’ll take the cure now.”

E-mail: peappl@nytimes.com

http://www.nytimes.com/2008/05/04/ny...l?ref=nyregion