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ALS

Photo from Christine Pendergast

Reviewed by Jeffrey Sanzel

The name of the book is Blink Spoken Here. It is written by Dr. Christopher Pendergast and Christine Pendergast of Miller Place.

That’s really all you need to know.

That, and please buy the book.

Blink Spoke Here. Dr. Christopher Pendergast and Christine Pendergast.  Buy the book.

You don’t need to finish reading this review.

You just need to buy the book.

Blink Spoke Here. Dr. Christopher Pendergast and Christine Pendergast.  Please buy the book. Now.

For those who want to know more …

It is easy to say that this is an important book — because it is. It is about exceptional bravery in the face of unfathomable adversity.  It is about a man who has defied the odds and lived with one of the single most difficult and devastating diseases:  ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. Emphasis on lived with. It is told in his words, with the assistance of his wife.

Authors Dr. Christopher Pendergast and Christine Pendergast

The title refers to how he wrote the book, with an eye-controlled device, as he does not have the use of his hands or his voice. His journey began with the diagnosis in 1993 and continues to this very day — to the very moment that you are reading this sentence. The average lifespan with ALS is two to five years; Dr. Pendergast has survived for twenty-seven. There is no medical answer as to why. But perhaps the Universe has chosen him for bigger reasons. Two of them? First: his bringing awareness to this monstrous affliction through his inspirational Ride For Life. Second: He has written this book.

In 1993, Dr. Pendergast had been a teacher for twenty-three years, married to his childhood sweetheart, Christine.  At the time of his diagnosis, he was in the Northport school district, and he continued to teach in the classroom for as long as possible. When that was no longer an option, he continued as a teacher for the world. Blink Spoken Here is a portrait of a teacher in the best sense of the word.  His passion to impart knowledge has infused his entire life.

Beginning with a description of the disease’s arc, he brings us into his world:

“It was not a dramatic event like a building collapse but a more steady deterioration similar to a bridge failure. I was imploding. In 1993, my physical presence began shrinking before my very eyes. 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. First it was dressing, followed by grooming, driving, toileting, walking, feeding, and breathing. Now I cling to my last vestiges of talking. It forced me retreat towards within. The exterior husband, father, and friend was left behind.”

Dr. Pendergast is unflinching in his brutal honesty about the pains and the challenges. He shares some of the darkest moments in his life. But, just as often, he speaks of hope and appreciation and deep faith. Many of the simplest things that we take for granted have been taken from Dr. Pendergast.  And yet, in all of this, he manages to find not just the good in life but the lessons that are offered every day. 

If these are not good enough reasons to read this book (and they should be), it is also a beautiful piece of writing. Dr. Pendergast writes with extraordinary eloquence and sincerity, with humor and insight. His prose is exquisite. He shares anecdotes and parables, free verse and personal accounts. The craft is equal to the art and both are worthy of the humanity that created it.

The memoir is split into two sections.  The first focuses on his coming to terms with the disease and its myriad challenges. (The first half even concludes with a wicked send-up of Dr. Seuss.)

The second half of the book focuses on the Ride for Life, which began in 1998 as the Ride to Congress. It follows his goals of bringing national awareness to ALS as well as an increase in services, knowledge, and fundraising. Taking his cue from the activism of the late 1960’s and early 1970’s, he finds his inspiration:

“For me, the remarkable results of these movements underscored the power of choosing to make a difference. The activists of those movements did more than complain about these wrongs; rather they opted to fight for change.  This activism formed a model in my subconscious. I followed this model 40 years later.” 

The initial support of his home school in Northport proves that it takes a village — or at least a district. Over the years, the Ride has evolved and has focused its activities in New York and Long Island.

From the “weight of secrecy” to his global advocacy, this is an odyssey that is both far-reaching and personal. His love for his wife and family and for his community comes through at every turn. This is a man who does not curse the darkness but moves towards the light. 

“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.”      

There are too many incredible moments to enumerate. Even the description of the challenge of opening an envelope is a revelation. There is a particularly telling incident with his son and church. It is a lesson in forgiveness and perspective, and its reverberations reflect his own continuing journey.

The final chapter, entitled “The First Amendment,” is a crushing account of his loss of the ability to speak: “To the educator, the voice is a powerful tool. It commands respect, informs and on occasion, inspires. The voice becomes our signature for the world. Losing it is catastrophic.” 

Dr. Pendergast describes the gradual decline in his vocal power and the various methods of communication. His frustration is honest and palpable just as his deep belief that his and all voices should be heard in one form or another.  He advocates for those who are desperately ill with ALS and that this basic human right should not terminate at the hospital door.

“Speech is freedom. Communication is the connection to the outside world. We all have a right to be heard … I want to be able to speak, even if it is only one blink at a time.” 

This chapter brilliantly closes the book. Because while he may have lost the physical voice, his spiritual voice continues. It is powerful. It commands respect. It informs. And, truly and always, it inspires.

Once again.

Blink Spoken Here. Dr. Christopher Pendergast and Christine Pendergast.

Don’t wait. Please buy this book. Now.

Blink Spoken Here: Tales From a Journey Within (Apprentice House Press) is available at Book Revue in Huntington, Amazon.com and BarnesandNoble.com.

Chris Pendergast celebrates his 70th birthday in April at 89 North Music Venue in Patchogue with family and friends. Photo by Elliot Perry

By Chris Pendergast

On a cold rainy Columbus Day, my life forever changed. Nothing would be the same. The life I knew ended. My wife, children and I embarked on a new road, one less traveled by. That has made all the difference.

During the Columbus Day weekend of 1993, I was diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease. Most people now know it is an incurable and uniformly fatal disease. Average life expectancy still hovers near the two or three-year mark. Lucky ones can live longer. A rare few survive longer than 10 years.

Remarkably, l am entering my 27th year with my unwanted road companion. I am here today due in large part to my loving wife, Christine, and our wonderful kids, Melissa and Buddy. They keep me well cared for and motivated. They have, literally, gone the extra mile for me. My grandson Patrick is the most effective medicine I take. My son-in-law Rich and step-grandson Ryan round out my terrific family.

I am blessed with caring, competent and compassionate caregivers, Tiana, Amanda, Marquita and Lena. They are in the trenches every day and night battling right beside and fighting the good fight with me. I am fortunate to have an outstanding mental health therapist, Dr. Melnekoff. He has kept me balanced, focused and headed in the right direction. My life is extended through the phenomenal care provided by my incredible respiratory therapist, Monty Rivera from Millennium. I receive expert medical treatment at the ALSA Clinic, which bears my name at Stony Brook University Hospital. Marvelous friends surround me and help with so many things to make our life easier. My ALS Ride for Life charity has countless volunteers led by staffers Maureen and Marilyn. Because of all their collective work, we have raised more than $8.5 million.

Along the road with ALS, I witnessed amazing things and met incredible people. I was able to participate in wonderful experiences which otherwise would not have happened.

Do I wish I never got ALS? Honestly, I am not sure. I am certain that at some point in almost everyone’s life, a fatal disease will arise. The timing and circumstances vary but the ending does not. I have no corner on the market — everyone will get a turn. My turn came earlier than expected and became more public.

It has been a great life so far. I wonder what new adventures and joys lie around the bend. Besides the joys to come, there are also the challenges and corresponding sorrows. However, I have faith and optimism that everyone one in my life will collectively help me triumph.

To paraphrase Gehrig’s farewell speech at Yankee Stadium, as he did, I also say, “Look at these grand people. Which of you wouldn’t consider it the highlight of his life just to associate with them for even one day? Sure, I’m lucky. Today I consider myself the luckiest man on the face of this earth.”

Chris Pendergast, 70, is a former Northport teacher, who lives in Miller Place. He is the founder of ALS Ride for Life, the Stony Brook University-based nonprofit dedicated to raising awareness about ALS, funding research and providing patient services.

Members of the Comsewogue High School girls varsity and junior varsity field hockey team dump water on themselves at the second annual ALS Ice Bucket Challenge on Wednesday Aug. 26. Photo by Giselle Barkley

As the president of the Port Jefferson Station Teachers Association, Beth Dimino is rarely hit in the face with whipped cream. But on Aug. 26, Dimino sat wearing a large black garbage bag as whipped cream from a pie toss dripped down her face and body — all in support of the second annual ALS Ice Bucket Challenge at Heritage Park in Mount Sinai.

Hundreds of people attended the event, which aimed to raise awareness of amyotrophic lateral sclerosis and money for research into the disease, through the Stony Brook-based organization Ride for Life. People who purchased a ticket could trade it for a chance to throw a whipped cream-filled plate at volunteers like Dimino.

Councilwoman Jane Bonner (C-Rocky Point) was one of many, including local school principals and teachers, to participate in the event’s dunk tank or pie-throwing games. For Bonner, supporting the cause is important, as her grandfather died from the rare disease around 35 years.

“It robs your body, not your mind,” Bonner said.

ALS affects nerve cells in the brain and spinal cord, causing motor neurons to degenerate. People with the disease lose control over their muscles, leaving them unable to speak, eat, move or breathe on their own. The cause of the disease is not yet known.

Bonner jumped at the chance to participate in the event this week.

“Chris just makes you want to [be involved],” she said about Christopher Pendergast, who founded Ride For Life in 1997 and has lived with the disease for more than 20 years. “He just inspired so many people to participate and bring awareness.”

According to Ray Manzoni, a member of the Ride For Life Board of Directors, Pendergast wanted to make this year’s event at Heritage Park bigger and better than last year’s ice bucket challenge, which focused on the ice bucket challenge itself.

Last year’s event occurred during the height of a worldwide trend in which people dumped buckets of ice water over their heads, and challenged others to follow suit, in order to bring publicity to the disease. Lori Baldassare, president of the Mount Sinai Heritage Trust, Bonner and Legislator Sarah Anker (D-Mount Sinai), all of whom attended this year’s event, were “instrumental in getting [the event] approved quickly” last year, according to Manzoni. That inaugural event was organized in four days.

Manzoni said this year they added the pie-tossing event, balloon twisting and face painting booths, cotton candy, hot dogs and more.

The Comsewogue girls’ varsity and junior varsity field hockey teams were also at the event. While many of them were dancing to the music there, they also donated money and helped organize the buckets for people to dump water on themselves or others during the ice bucket challenge. The buckets were arranged at the end of the event to spell out “ICE ALS.”

“The goal is to have this and other events that Ride For Life supports and make them bigger and better,” Manzoni said.

Although he did not know how much money the group raised this year, Manzoni hoped it matched or exceeded the amount of money raised last year, $5,000. He added that successful research into ALS can also help research for Alzheimer’s and Parkinson’s disease, which are more common but have similarities.

According to the ALS Association’s website, the disease affects around 6,400 people annually in the United States alone. Only 10 percent of people who are diagnosed with the disease inherited it, while the rest are affected by the disease at random.

For people and organizations like Ride For Life, these events are important.

The goal is “to build awareness and money so that we can continue [our efforts],” Manzoni said.

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Participants dump buckets of ice water over their heads during last year’s event. File photo by Erika Karp

This challenge can’t get much colder, and for the second year in a row, Mount Sinai is looking for help icing amyotrophic lateral sclerosis.

Last year, 500 participants from all over the North Shore came out to Heritage Park in Mount Sinai for the Ride for Life Ice ALS challenge, to raise money to help spread awareness and find a cure for ALS.

The disease affects nerve cells in the brain and spinal cord, causing motor neurons to degenerate. People with the disease lose control over their muscles, leaving them unable to speak, eat, move or breathe on their own.

With events like the one at Heritage Park, people all over the world have brought attention to ALS, and on Aug. 26, Mount Sinai is doing it again.

Game booths, face painting, balloon twisting, dunk tanks and pie tosses are just a few of the events listed for Wednesday’s ice bucket challenge. Admission to the event, which begins at 5 p.m., is free, and T-shirts and other ALS awareness items will be available for purchase. Hot dogs, cotton candy and soda will also be available, as well as a limited supply of buckets.

To help support the cause, create a team or collect pledges for the Big Dump, which will begin promptly at 7 p.m.

“Last year, more than 500 people participated in the challenge and I expect to see a bigger crowd this year,” Councilwoman Jane Bonner (C-Rocky Point) said in a press release. “We need all the help we can get from friends, family, businesses, sports teams and more to come together so we can find a cure for ALS.”

Paper pledge forms can be found on www.alsrideforlife.org. In the event of bad weather, a rain date is scheduled for Sept. 2. Email [email protected] or go to Facebook’s ALS Ride for Life page for more information.