October 15, 2020

ALS champ and prolific fundraiser Chris Pendergast dies after record-breaking 27-year illness

Author: Liza Frenette
Source:  NYSUT Communications
chris pendergast
Caption: Photo provided.

A mighty oak has fallen.

You could take the measure of retired teacher and long-time ALS survivor Christopher Pendergast by the $10 million his organizations raised to help wipe out this cruel disease.

You could sharpen the portrait of his life by zooming in on his endurance and tenacity as a wheelchair-bound man with immovable muscles who typed out a manuscript of his journey by blinking his eyes to move a key — letter by letter.

Blink — it was the first word in his recently published book: Blink Spoken Here: Tales from a Journey to Within, which was just released three months ago. In it, he wrote:

“It was not a dramatic event like a building collapse but a more steady deterioration similar to a bridge failure. I was imploding…My contact with the world was severing, one function at a time. Angry, scared and saddened I was like a stubborn mule fighting with tenacity for each inch I surrendered.”

As his body weakened his resolve strengthened.

“I simply wanted to fight. I never thought I’d be here all these years later. It’s like an out-of-body experience,” he said from his Long Island home last year on the day of his 70th birthday celebration, whispering in a barely audible voice, each word a loose stone. “The day I stopped dying from ALS and began living is a metaphor for turning my disease into a vehicle to do good.”

Waning words: waxing wishes. The man was moon shine.

Losing his voice was a terrible blow to a man who by then was a quadriplegic.

“To the educator, the voice is a powerful tool,” Pendergast wrote. “It commands respect, informs and on occasion, inspires. The voice becomes our signature for the world. Losing it is catastrophic.”

In his long and muscled turn to move his disease from affliction to affirmation, year after year after year during his 27 years with ALS, he arched himself back in his extended wheelchair and hosted school assemblies. He talked with students about hope and defying the odds — in later years, doing so with his breathing mask clamped on his face while his computer spoke for him.

Pendergast wasn’t just talking about his own plight – he knew students could be struggling with divorcing parents, bullying, addiction, poverty and other hurdles. In 2019 alone, Pendergast and company conducted 80 school assemblies coordinated by retired teacher Barbara Brown, North Babylon TA.

Pendergast said he merely widened his curriculum: “I now teach life,” he said.

As a former science teacher with the United Teachers of Northport, he was very comfortable in schools, where his own classroom once held critters of all kinds that he used to help his students learn about nature and responsibility.

On Pendergast’s annual day-long ALS Ride for Life, held since 1998 with other ALSers and with volunteers, he would stop at each school on the Long Island route and direct his vivid blue-eyed gaze from his wheelchair to students standing outside with posters, cheering.

While the high-school choir sang "Fight Song" or "Blowing in the Wind," “he would look at each of the kids in the eye,” said Charlotte Johnson, a music teacher and member of the Port Jefferson Station Teachers Association.

Johnson had her students prepare and sing a song every year for the ALS Riders when they stopped at the school. In her first year at Port Jefferson in 1993, she met and worked with Christine Pendergast, a physical education teacher. That same fall, Christine’s husband – Chris — was diagnosed with ALS and given 2-5 years to live.

Johnson, like so many others, has since been a regular fundraiser for the “Pendergast promise” to find a cure for ALS. Money raised is spent on research and treatment, and grants can also provide families dealing with ALS with respite care, vans, wheelchairs, and other specialized equipment. Scholarships are provided to students whose lives have been affected by ALS in a family member.

Along with the ALS Ride for Life, Pendergast and his crew of helpers have organized ongoing bike treks and golf tournaments to keep generating funds for the mission. In 2014, Pendergast jumped aboard the Ice Bucket Challenge ALS social-media frenzy and hosted a Bold the Cold event, urging supporters to “ice ALS.”

He once spent 16 days traveling in his wheelchair all the way to Washington D.C. He successfully advocated for waiving the waiting time for a person with ALS to collect disability. Prior to that, “maybe half would die before getting one penny of their money,” he said.

He also successfully advocated for the 2009 creation of an ALS registry through the Centers for Disease Control which collects data on ALS patients, funds research, and provides information on clinical trials. The more ALS is acknowledged and recorded, the more doors are opened for funding for research and trials, Pendergast explained.

ALS is insidious. Known as “Lou Gehrig’s Disease” in memory of the Yankee baseball hero who suffered with it, the illness kills nerve cells controlling the body’s muscles. People with ALS will lose all motor coordination and the ability to move or breathe on their own – sometimes at warp speed. Then, there those like Pendergast, whose not only courageous but awe-inspiring 27-year battle with ALS was record breaking.

Pendergast’s work was recognized and honored with the creation of the Christopher Pendergast Center for Excellence at the State University of New York Stony Brook Medical Center. Ride for Life donations help support the center, which was the first ALS medical treatment facility on Long Island. Prior to that, patients had to find a way to make cumbersome trips into New York City for care and treatment. Now, patients can access care for body and mind through rehabilitation, psychological support, physical and respiratory therapy, speech pathology and many other needed services at the clinic.

Pendergast’s mind remained sharp, and he said his purpose, his writing, his faith and his ability to ask for and receive help aided him. His illness and its subsequent revolution of his life have required him to rely on others to help him in his quest to outwit ALS.

At its onset, it was his local teacher’s union, the UTN, which enabled him to continue teaching in the early stages of his illness. The local advocated getting him an assistant and some practical teaching tools. Colleagues banded together to provide him rides to and from school in dense Long Island traffic and even put together a book called “Driving with Chris.”

In 2008, Pendergast was honored by NYSUT at the annual Representative Assembly for Exemplary Community Service award.

Through the organizations he created, his service to community, neighbor, and strangers with ALS whom he never met will now live on through his work.

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