Ride For Life: His trek with ALS: Rolling from Manhattan to Montauk to raise money, awareness and hope

June 12, 2005

More than 200 people crowded the windy flight deck of the USS Intrepid, the Rocky Point High School marching band blasted the "Rocky" theme song and members of the NYPD's Highway Patrol maneuvered their motorcycles to block a sea of cars on 12th Avenue.

Smiling as he veered his electric wheelchair toward the podium, Christopher Pendergast was looking forward to the next 10 days - 10 days when he was in control.

"I'm feeling great," Pendergast said before leading more than 100 people on the eighth annual Ride For Life - a 150-mile voyage to spread ALS awareness from the crowded streets of Manhattan to the hilly roads of Montauk. "It's one of the few days that having ALS is fun."

Pendergast, 56, has lived with ALS, or Lou Gehrig's disease, for 11 years - astounding doctors and patients used to people dying only two to five years after their first symptom.

Lou Gehrig died 23 months after standing in Yankee Stadium on July 4, 1939, and famously declaring himself the "luckiest man on the face of the earth."

As his disease progressed, Pendergast lost the use of his legs and his hands. He cannot feed himself, and when he cries, someone has to wipe his tears. Eventually, the disease will claim his life. But until then, he lives as an adoring husband and father who taught his two children to take nothing for granted, love life and live it, no matter what; a medical miracle who is living with ALS, not dying from it; and the creator of an annual journey that gives weakening ALS patients a power they may never feel again - the power to make a difference. Even on the days when breathing and moving are difficult, Pendergast said he draws energy "from a power far greater than us" and his desire to honor "the privilege" of the unexpected years after his diagnosis.

"By the grace of God only, that's why he's here with us," said Pendergast's wife of 32 years, Christine Pendergast. "It's not always easy with his involvement because it's constant involvement. He lives this every day within his own body and with what he's doing."

Spreading the word

A week earlier, a gymnasium full of 300 Sayville High School 10th-graders quieted as Pendergast rolled his wheelchair to center court. He looked at the young faces, and old emotions welled up. "I am here because I am going to die," he said with tears in his eyes. "And I've been told there's not a damn thing anyone can do about it."

From there, he moved on to Lincoln Avenue Elementary School in Sayville: "It is a simple fact, and I have to share it with you," he said. "I have an illness that is going to make me die."

Gasps circulated through the cafeteria filled with fifth-graders, who raised their eyebrows in shock and exchanged puzzled glances.

The grim diagnosis is Pendergast's reality. He has shared his story in this school year with more than 10,000 students on Long Island, Manhattan, upstate New York and New Jersey.

ALS, or amyotrophic lateral sclerosis, is a degeneration of brain and spinal cord nerve cells that are responsible for controlling voluntary muscles. By the disease's end, patients cannot move their arms and legs, and weakness in diaphragm muscles makes breathing nearly impossible.

"These people are going to die from this disease," said Dr. Jeffrey Rothstein, medical director for the Robert Packard Center for ALS Research at Johns Hopkins University in Baltimore. "There's no if, ands or buts about it."

Although a cure for ALS is not in sight, doctors continue to research the cause and therapies for the disease. Research money is not what it might be. The disease kills far fewer people than heart disease or various cancers. And ALS patients are not necessarily the best advocates - they usually die soon after they are diagnosed, and those who are alive are often robbed of their voices.

About 5,600 Americans are diagnosed with ALS each year and another 5,600 die from the disease, said Jeff Snyder, of The ALS Association, a national group that promotes research and provides patient services.

Pendergast estimates that an American dies from ALS every 90 minutes. "Chris is an exception," Rothstein said. "He already is one of the few that live that long."

Early symptoms

ALS symptoms first invaded Pendergast's body more than 12 years ago. But at the time, he did not know what was wrong.

Suddenly, he lagged a half-step behind while playing tennis with Christine. He also experienced an unsettling twitch, a common ALS symptom.

"And at night," he said, "it felt like little leprechauns were dancing all over me."

By Columbus Day weekend 1993, when his doctor phoned, the Northport elementary school teacher who worked with high potential learners, had already diagnosed himself.

That night, Pendergast, a robust man at 6-foot-2 and 255 pounds, lay awake thinking thoughts of death - his death - and constantly replaying the how, the why and the when.

"It was the longest night of my life," he said, sitting nearly motionless in his blue reclining chair at his home in Miller Place. "I could not say Lou Gehrig's disease and my name at the same time without sobbing."

The diagnosis also forced Christine to expect the worst.

"I'm thinking immediately, that's it, it's over," Christine said. "You just think, I'm going to be a widow in two to three years; what will I do, my kids will still be young. Your mind goes all over the place."

But the morose thoughts have not been borne out.

Eleven years later, Pendergast has watched daughter, Melissa, and son, Buddy (also named Christopher), graduate from high school. This month, for Melissa's wedding, he happily anticipates taking short steps while escorting her down a portion of the aisle.

"Everything we thought was impossible is unfolding to be reality," Melissa said.

Family and fellow ALS advocates label Pendergast's longevity a gift - a blessing that helped push this fatal disease into the public eye.

But at first, advocacy was not Pendergast's intention. Newly diagnosed, he had searched for medicine to ease his symptoms or even cure the disease and a specialist who knew the ins and outs of ALS. Eventually, he became resigned to ALS and its difficult symptoms.

"If my disease has no cure, then it is my fault," Pendergast told students during his Sayville High presentation. "If my disease was not well known, that was my fault. If my disease does not have any hope, that also was my fault because I was not doing a damn thing about it."

A $1.5 million contribution

Ride For Life Inc. was his solution. The not-for-profit charity operates out of his home, where file cabinets, a fax machine and a large desk squeeze into his dining room. On the desk sits a laptop, where Aliti Tikosaya, Pendergast's live-in caregiver, writes e-mails, letters and presentations. Next to that, a large computer screen shows Pendergast every word he just dictated.

Taped to the side of the screen is a white piece of paper listing the typed names of 23 ALS patients, former riders who have succumbed to the disease.

Since 1999, the organization has raised more than $1.5 million, according to public records and Pendergast. Of that money, 50 percent goes toward research, 40 percent toward assisting patients and 10 percent toward education.

By far, the charity's biggest event is the Ride For Life. During the event, patients ride their electric wheelchairs while supporters walk an average of 12 to 18 miles a day.

Seven years ago, Pendergast, as a member of The ALS Association Greater NY Chapter, rode 350 miles from Manhattan to Washington, D.C., where he joined others on ALS Advocacy Day to demand more government funds for research.

"The thing that will find cures for diseases is public outcry," said David Deutsch, a 37-year-old father of two who lives in West Sayville and was diagnosed with ALS last year. "If Americans stepped up, we could do it. That's what's so frustrating to me: ALS has been identified for over 100 years, and we've made virtually zero progress toward finding a cure."

Reminded of the freedom rides of the 1960s, which awed and inspired him, Pendergast created the Ride For Life to fight the disease that was slowly attacking him. Since then, it has grown from two riders - Pendergast and Fernando Tedesco, an ALS patient from Baldwin who has since died - to a major production. This year, the event included 20 core volunteers, seven full-time riders, 20 ALS patients who participated at least one day, and more than 1,000 walkers. Jennifer Lowy, executive director of Ride For Life, said this year's ride was the largest yet.

On Friday, May 13, the Ride For Life moved from the Intrepid to Yankee Stadium, eight miles to the north. Taxi drivers honked at the never-ending line of white shirts suspending traffic, and shopkeepers ran to their doors to see what was causing the clamor. High school students flooded the sidewalks, handing out informational fliers and leaving no empty hands. Donation cans were stuffed to their brims.

By midday, the group, full of newcomers and old pros, was a traveling family reunion. The gathering included relatives of deceased ALS patients, like the woman who said the riders' motionless hands somehow triggered memories of her son; sons and daughters walking alongside their stricken mothers and fathers in wheelchairs, appalled at how fast the disease had attacked; and patients praying their 10-day-long protest would lead to a cure.

"What time is it?" a voice screamed.

More than 100 walkers and riders yelled: "Time for a cure!"

Medicine and faith

No one knows why Chris Pendergast has lived so long with ALS. Perhaps he has a variant of the disease or his body's cells can fight ALS better than the average patient.

Dr. Rahman Pourmand, director of the ALS Clinic at Stony Brook University Hospital and Pendergast's doctor, said all tests confirm it is ALS, not another disease, that is slowly attacking Pendergast's body.

Pendergast spends $1,000 a month on Rilutek, a medicine shown to lengthen ALS patients' survival by six to nine months - the pill is covered by his insurance. With 60 percent of his breathing gone, he sleeps hooked to a ventilator that pumps air through a plastic mask, allowing his breathing muscles to rest overnight. Sometimes, his speech is slurred and his legs capable of shuffling him only from his bed to his wheelchair and his desk.

It's not clear how long Pendergast has to live, but whenever death comes, he says, he'll be at peace with it. After his diagnosis, Pendergast, who attended Mass only on the major holidays, turned to faith. Now, he hates to miss weekly services.

Leaving Lincoln Avenue Elementary School last month, Pendergast asked Tikosaya, his caregiver, to turn on his song. The tinkling of piano keys filled the van. Then the hymn "How Great Thou Art."

Pendergast lifted his left foot on the dashboard, bouncing his knee and bobbing his head. He belted out, "Then sings my soul, my savior God to thee; How great thou art, how great thou art!"

An inspiration

On Day 5, a sunny Tuesday afternoon, the Ride For Life advanced along Deer Park Avenue. More than 150 high school students and walkers stretched one mile long. The atmosphere was light. Sporadically, they yelled "Honk your horn for ALS," and happily raised their fists at passing cars. One of the marchers beat a snare drum.

Students at Marion G. Vedder Elementary School in North Babylon lined the lawn, cheering and holding signs that read "Thank You Ride For Life."

Pendergast, eager to show his appreciation, asked a North Babylon student to "pick up my hand and let me wave."

The boy raised Pendergast's left arm, and his feeble hand jerked front to back.

Bill Blough, an ALS patient who traveled from Baton Rouge, La., to New York for the ride, said the journey would not be complete without Pendergast. "I can't imagine anyone else doing this," Blough, 65, said. "You have to be someone that has lived your life the right way to have the respect of people you have met along the way."

For Pendergast, the line between living with ALS and fighting for a cure blurred long ago, when he converted his dining room to an office and his garage into a storage space for T-shirts and five wheelchairs - the Ride For Life organization makes the chairs available for patients who cannot afford them or who need them immediately.

And as the Ride For Life took over Pendergast's house, it also took over his family life. Buddy was 13 when he served as both caretaker and advocate during his dad's first ride. Melissa celebrated her 21st birthday on the ride in a Maryland dive bar. The family has no regrets.

"It was a different way to grow up, that's for sure," Buddy, 20, said. "But I wouldn't change it. That's the way it is, and that's the way it's supposed to be."

On Day 10, rain-drenched riders, in yellow rain suits and with garbage bags covering their feet and wheelchairs, continued along Montauk Highway. In part, their persistence was inspired by those no longer here.

"At times, you feel like we're not getting anywhere - people are still dying," Christine said. "Over time, I realized that the ride has such an impact on people with ALS ... maybe it's not about saving lives from death, maybe it's about saving lives from the day-to-day living of ALS."

Rich Kornak, 48, of Middletown, N.Y., was diagnosed with ALS two years ago and said he "couldn't miss this opportunity to make a difference."

The sun beamed along the road as Kornak, Pendergast and 150 others left Hither Hills State Park and neared Long Island's end. They took in the Atlantic Ocean to the south and went by the famous Memory Motel and passed through Montauk's downtown circle.

The group sang loudly in call and response. "For ALS we walk today; Find a cure is what we say."

"From the city to the beach; A cure is what we have to reach."

Pendergast urged walkers to give pamphlets to every person on the sidewalks. With one corner to turn before the riders entered the local Catholic church, St. Therese of Lisieux, emotions climbed and cheers grew louder.

"This is the end," yelled a man standing on an embankment and wildly clapping.

"No," Pendergast said. "It's the beginning."

At 5 p.m., they were inside the church. The high spirits of the ride had transformed into reflection. Those gathered lit candles and read names of 90 people who have died from ALS. Some were former riders; others were people whose names were submitted by family and friends on the Ride For Life Web site.

Upon hearing the names of those he remembered, Pendergast bowed his head or looked above with a smile and a nod. Christine dabbed her eyes. Seeing that her husband also was quietly crying, she leaned over and wiped his tears.