“Life is too short to spend wishing things were not so. Things are what they are. Some occurrences are not our choice. However, we do choose how to respond. We decide how to live the life we get.” – Dr. Chris Pendergast, in an excerpt from “Blink Spoken Here”
With a simple blink, Chris Pendergast wrote one letter. Then the next, and the next — continuing on this way for hundreds of thousands of characters selected on a 15-inch computer screen.
And he used only his eyes.
The ensuing words unfold across the 314 pages of his recently published memoir, “Blink Spoken Here: Tales From A Journey To Within,” written with the help of his wife, Christine, almost 28 years after he was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, a devastating neuromuscular disease with no cure.
His prognosis was that he only had 36 months to live.
“I refused to simply wait to die,” he wrote in an email, using his eye-controlled computer from his home in Miller Place. “With Gehrig’s grit, I chose to live with ALS, not die from it. I wrote stories as our family made the journey. It evolved into the book.”
In it, he details the joys and blessings, the hope and faith, the terror, worry and torment of living with a terminal illness — the first section filled with reflections and stories from his personal life, and the second part detailing his advocacy work, including the ALS Ride For Life, which once started or stopped in Montauk, before moving further west.
“I relived some intimate and sobering times in some personal stories as I wrote them,” Mr. Pendergast said. “It allowed me to look at my behavior in a new and not-as-favorable light. At times, I cried, laughed and occasionally felt shame, but always marveled at the blessings I had. My family and friends are priceless. This was a gift ALS gave me.”
The longtime elementary school teacher shares memories of his beloved students and co-workers who became family, as well as his wife, children and grandchildren, whom he never imagined he’d live to see. He interweaves his prose with poetry, and recollects his travels. He faces the frustrations of ALS head on, careful not to sugarcoat his pain and sorrow — which can feel gut-wrenching and uncomfortable to read, but also necessary and intimate.
“When the book was published and actually in our hands, we fell in love with it, just like when we held our children when they were born,” Ms. Pendergast said. “The feel of the cover was like velvet. Seeing our words in print, the design of the cover mimicking the eyeball that Chris used to write the words, letter by letter — a perfect package. And best of all was the message that the stories relayed: all about living a life with hope and love.”
Despite its uplifting message, the writing process itself was exhausting and all-consuming, said Mr. Pendergast, who often found himself doubting whether it would ever be published.
When he did finally hold the book in his hands last month, he was ecstatic, he said. It was a realization of a “lifetime of dreams.”
“The book took me thousands of hours to write,” Mr. Pendergast said. “I sat staring bleary eyed at a monitor mounted on my power wheelchair. I wrote with my eyes using a specialized computer and software. I painstakingly chose one letter at a time, forming words, sentences and, ultimately, the entire book. The process was tedious, slow and intense, requiring tremendous patience.”
His wife stuck by his side through the entire journey and, together, they formed a team. He provided the framework and she was the fact-checker, reinforcing his admiration and respect for her.
“I always loved Christine,” he said. “From the moment I first saw her 55 years ago, I knew we were destined to share our lives together. Our relationship has its rough spots. Our marriage has been difficult at times. Through it all, we hung in and persevered.
“I never realized how tough she was,” he continued. “She has shown incredible strength and resilience well beyond ordinary people. Most wives of patients could not do what she has done. More than half our married life has been with me sick. It is the vows personified, ‘In sickness and in health, good times and in bad till death do us part.’ I am in awe of her. My love has amplified over time. She is a wonderful wife and an outstanding person.”
After falling in love as teenagers, the Pendergasts married after college and both pursued careers as educators. In the midst of raising their two children, ALS struck in their 20th year of marriage. Ever since, Mr. Pendergast has strived to be his wife’s partner, not her burden, he says in the book.
“I have known Chris since he was 15,” Ms. Pendergast said. “He was always driven to work and work hard. I was never surprised at that quality. What surprised me was that as ALS took more and more of his body, his drive and spirit grew stronger. He always was outpacing me with his energy and his ambition.”
Initially, the earliest symptoms of ALS raised no red flags, until the occasional cramping in Mr. Pendergast’s leg moved to his abdomen, neck and face, and soon, everywhere. Then, he began falling — once over his son’s bicycle that he tried to step over, and another time while standing on a log, performing a solid lumberjack impression while holding a chainsaw until he tumbled off, its buzzing blade brushing the leg of his jeans and shredding them.
They sought help from a neurologist, who ultimately delivered the devastating diagnosis on October 13, 1993, over the phone.
“I remember my wife and I held each other and sobbed, neither wanting to let go first,” Mr. Pendergast said. “Looking back, perhaps that moment was a metaphor for our lives. I think my strongest reaction was overriding fear. At 44 years old, I didn’t want to die.”
What came next he compares to a bridge failure, as opposed to a building collapse, in the steady deterioration of his functions, from dressing his 6-foot-2-inch frame to grooming, driving, walking, feeding and breathing. Today, he clings to his last vestiges of speaking, primarily using a voice synthesizer to communicate with the world.
“Knowing I have lived so far beyond expectations makes me thankful and joyful. It also leaves me with a tremendous sense of responsibility,” Mr. Pendergast said. “Over those years, I estimate 150,000 patients have died. I should have been one of them. In a sense, someone ‘gave up’ their seat in the lifeboat of survivors for me. I feel obligated to pay this precious gift forward.”
While he continued to teach for eight years after his diagnosis, Mr. Pendergast pivoted to advocacy work, founding the ALS Ride for Life organization in 1998. On a sunny May day, he met with a group of participants near Yankee Stadium — aptly, the Lou Gehrig Plaza — and began a 15-day odyssey on his electric scooter to Washington, D.C., in an effort to raise awareness and funds, which exceed $8 million today.
“I grew up in the ’60s, an era of protests,” he said. “I witnessed people struggling to right injustice. When I received my diagnosis, it was natural for me to ‘take to the streets’ to do good trouble.”
After three rides to the nation’s capital, Mr. Pendergast moved the event to Long Island, with rides often starting or ended in Montauk. And while the COVID-19 pandemic canceled the ride for the first time in its history, as well as all of his speaking gigs — which have touched 50,000 students over the last 15 years — they have not lost their impact.
The ride itself has made Mr. Pendergast a better husband and father, he said, and gave his life a sense of purpose and value. To that end, so did penning “Blink Spoken Here,” he said, as he considers what his future will now hold.
“As the euphoria wore off, I felt a bit lost. I had focused and devoted everything to this,” he said of writing the book. “At one point, I was manically working on little else. Finishing it left me adrift and I seemed to lose my purpose in life. The book was [a] culmination of a lifetime of dreams and summarized my passion during the last 30 years. The Ride event ended with the pandemic and my school presentations eliminated. Like millions of Americans, I had to reinvent myself.
“Unlike most Americans, I am a quadriplegic with a fatal disease,” he continued. “Reinventing myself will take time, but like each challenge I faced, I will overcome it.”
Writer’s note: Two months after this article appeared in the Southampton Press, Chris died from his illness. His memorial is below. It was an honor to know him.
Christopher Pendergast, 71, Dies After 28-Year Fight With ALS
Christopher Pendergast, a retired elementary school teacher, author, poet and family man who turned his Lou Gehrig’s disease diagnosis into a campaign to foster awareness and fund research for nearly three decades, died from the illness on October 14. He was 71.
Surrounded by his loved ones, the driving force behind ALS Ride for Life — an annual wheelchair ride across Long Island that has raised more than $10 million — died after several days on home hospice care in Miller Place.
Just 24 hours before his death, he had entered his 28th year living with ALS, a devastating, incurable neuromuscular system disease that has an average survival time of approximately three years.
While the disease took his ability to speak about a year ago, his mind remained sharp, his humor witty and his emotions unbarred. He both communicated and wrote through an eye gaze computer, allowing him to pen “Blink Spoken Here: Tales From A Journey To Within” with his wife, Christine, one blink at a time.
“I refused to simply wait to die,” he wrote in an email interview with The Express News Group in August. “With Gehrig’s grit, I chose to live with ALS, not die from it.”
From his motorized wheelchair, Mr. Pendergast led the first ALS Ride for Life in 1998, five years after his diagnosis. The ambitious, 15-day odyssey to Washington, D.C., started near Yankee Stadium before moving closer to home in subsequent years, once starting or stopping in Montauk before moving once again further west.
The money the ride raised has funded a variety of ALS-related research, patient and caregiver services, education about the degenerative disease, and numerous programs, including the Christopher Pendergast ALS Center of Excellence. The center opened at Long Island’s Stony Brook University over a decade ago, and continues to provide a level of services that were previously only available in New York.
“Knowing I have lived so far beyond expectations makes me thankful and joyful. It also leaves me with a tremendous sense of responsibility,” Mr. Pendergast had told The Express News Group. “Over those years, I estimate 150,000 patients have died. I should have been one of them. In a sense, someone ‘gave up’ their seat in the lifeboat of survivors for me. I feel obligated to pay this precious gift forward.”
Mr. Pendergast is survived by his wife, who was his high school sweetheart, their two children, Buddy Pendergast and Melissa Scriven, and their grandson, Patrick Scali. A socially distanced group of mourners gathered for a memorial service on Sunday night at O.B. Davis Funeral Home in Miller Place, where his son gave a eulogy.
“I came home Thursday night, walked up the stairs, my bedroom door was shut, which it never is. And the one reading I contemplated wanting to read had blown across my floor, around my couch and was half under my door,” Buddy Pendergast said, his voice cracking as he shook his head.
“You can’t make this up. And I stood there and I was so confused, I said, ‘Did I leave this here?’ I didn’t. I thought for a moment, I retraced my steps, and it was lying there at my feet, staring back at me. And I knew he answered my question of what I should read tonight. So he made this a lot easier for me, as I’m doing so great.”
Fighting back tears, Mr. Pendergast recited the breathtaking words of his father, a poem that captured his love of nature and its resilience through the changing seasons.
“We all live our season and it’s the cycle of life,” Mr. Pendergast said in conclusion. “We were blessed and fortunate to share a very long season with him, longer than any could have imagined, and that’s something to be eternally thankful for.”
As published in the Southampton Press