THE BLOG

Lessons in Speaking From the Heart

06/03/2015 12:26 pm ET | Updated Jun 02, 2016

2015-05-12-1431461912-8220311-ORIGINALbigstockBrainFunctionLoss54186491.jpg

Irish playwright George Bernard Shaw once said, "Life is no brief candle ... It is a sort of splendid torch, which I've got hold of for the moment, and I want to make it burn as brightly as possible before handing it to future generations."

Bob Mumford burns bright today, a remarkable torch to family and friends, as the winds of life seek to douse his spark. I met Bob more than 30 years when we were young bucks on Cape Cod; I was a cub reporter, and Bob was a brilliant transportation expert on this fragile spit of land whose population in summer swells to the size of Boston. There's only one way on and one way off this peninsula -- a dead end, the shape of a blacksmith's fist and forearm. It is a "wild and rank place," wrote Henry David Thoreau in the 1800s: "A man may stand there put all of America behind him." The land here narrows to a seagull swoop; so one has to know their stuff to expound on traffic.

Bob still knows his stuff. Age has blessed him with great sagacity; he's now putting all of America -- life as he once knew it -- behind him.

Weeks ago, walking on the lip of spring into the eclectic Chocolate Sparrow café on the Outer Cape in Orleans on a tempest of a March day, Bob at a distance looks the picture of health. A handsome man in the fifth decade, his smile is engaging, his handshake strong, his body language poised.

Yet there is something different about him. He is wearing a tight blue ski cap, covering what appears to be tiny white suction cups attached to the head; he's carrying a canvas satchel, the size of a small toaster, with a battery pack and chords that snake beneath the ski cap.

"Every day's a blessing," Bob declares, knowing I'm unaware of his denouement.

"How are you doing?" he asks openly regarding my diagnosis of Early Onset Alzheimer's, a disease that stole my maternal grandfather, my mother, my paternal uncle and now is coming for me.

"Every day's a blessing," I respond in kind.

I'm stunned as Bob takes off the cap. I fumble for a response, and can only find the words to say, "My God!"

Bob's head is shaved; it's covered with electrodes that on cue, he explains, zaps what is left of a rare, terminal brain tumor. The process is called Novocure; it produces an electric field that disrupts and destroys the cancer cells as they are dividing.

A section of Bob's tumor, as much as possible, was removed last summer at Dana Farber Cancer Center in Boston, along with about 75 percent of his cranium, the part of the skull that encloses the brain. Called the "braincase," the cranium, research tells me later, protects the brain and head, and supports facial structures such as the eyes and ears, holding them in place to collect sensory information most efficiently.

Hard to imagine losing a "braincase," somewhat like an egg rolling off a table.

After the operation when Bob was handed his battery pack lifeline, he asked doctors how long he had to cart it around.

"From six months to forever," he was told.

"How long is forever?" Bob asked.

It's a question many of us ponder today.

The human brain is a fragile organ that inaugurates connectivity the first week in utero. It contains 100 billion neurons -- 16 billion times the number of people on Earth -- with each neuron igniting more than 10,000 synaptic connections to other neurons, totaling more than a trillion connections that store memories. If your brain functioned like an old digital video recorder, it could hold more than 3 million hours of TV shows, enough video storage for 300 years. Not bad for a mass the size of an average head of cabbage, with the encoding, storage, and retrieval capacity to determine, on a good day, how many angels can dance on the head of a pin.

Yet Bob, a champion of a man, is sanguine about his state of mind and dreadful memory loss, a mindset we both share today. It is dispiriting to lose a thought in a second, 86,400 seconds in a day, not knowing when the next lapse will occur; to stand exposed, and yet stand one's ground, to begin to grasp in fundamental, naked terms, who one really is -- the good, the bad, and the ugly. The ugly is haunting; the many things one would like to take back over the years, but cannot -- feelings of failure and transgression.

As Baby Boomers, Bob and I are coming of age. Over coffee at a corner table, we reflect on the past. We always thought, until now, that better days lay ahead. That's the way it is with unconquerable Boomers -- sons and daughters of the Greatest Generation whose grandparents endured World War I, and whose parents then survived the Great Depression and World War II, perhaps the last world conflagration until Armageddon. These boomers, a record 76 million of us born between 1946 and 1964, first played by the rules, broke the rules, then made new rules.

Many of us grew up in the '50s, formative years when Einstein was still thinking, Hemingway was still writing, and Sinatra was still crooning. Our lives reflected history: the long, fading shadow of Franklin Delano Roosevelt, the dropping of hellish atomic bombs on Hiroshima and Nagasaki, the Korean War, the election of presidents Dwight Eisenhower, John F. Kennedy, Lyndon Johnson, Richard Nixon, and all his heavy baggage; the apocalyptic Cuban Missile Crisis, the Vietnam War, Woodstock, the birth of free love, and the death of innocence. It was a revolutionary time that spanned perhaps more cultural shifts than any other generation with writers, artists, and musicians and who still define this country's political, secular, and artistic persona.

Now Bob and I must work to redefine ourselves, as the shadows of life creep in like a fog rolling toward the shoreline. Death by a thousand cuts? We don't see it that way.

"Unfortunately, life is a fatal disease," Bob opines.

I nod my head. "It is what it is," I say.

Still we haven't lost humor; Bob laughs at the Bugs Bunny riposte, "Don't take life too seriously. You'll never get out alive!"

Crazy wabbit!

Aren't we all a bit crazy, swimming against the odds?

The father of two incredible children, Bob was diagnosed last July after his beautiful, caring wife Sarah and friends noticed something was deeply wrong. Bob was off his game, not remembering, losing at times his sense of self.

"You have a problem," doctors told him after tests confirmed that he had a rare Glioblastoma Multiforme (GBM) brain tumor with only 8,000 known diagnosis, a survival rate of one percent, and the house betting against surviving an operation.

"I dodged a bullet," Bob tells me in full gait, gratified to have survived the procedure and be able to "eat, think and talk," the basics of life.

"I told my doctor, 'Make sure I come out of this.'"

Bob speaks from the heart, a journey one takes from the cradle to the grave, accelerated by mind numbing disease.

A lesser man might have sought an easier way out. Not Bob. He defines "fight." Look the word up in Webster's you might find a synonym that says, "See also Bob Mumford."

Bob is a role mode. Years ago, having witnessed firsthand the painful, terrifying slow demise of my grandfather, my mother and my uncle from Alzheimer's, a death in slow motion, I sought an exit strategy and failed at it--learning, as Bob exemplifies today, that the real measure of an individual is not the stock portfolio, the business card, the material possessions, or good looks, but the fight in one to get up off the mat after getting knocked on your ass. Lying down is a position of defeat. Bob has reinforced this in me. He stands tall, swimming against the odds.

Such challenges are motivation to dig deeper into a cognitive reserve. The process of fighting off symptoms -- whether cancer, Alzheimer's, ALS, AIDS, Autism, heart disease or any number of vile illnesses -- is exhausting, and yet exhilarating, when one succeeds in a forceful fight for clarity.

The conversation between us now moves to nature, as it often does in these parts, to herring and the olfactory phenomena displayed in Atlantic herring, alewives, as they make their annual migration at the strike of spring -- just down the street through the ancient Brewster Herring Run, thousands of them fighting, like salmon, against a flush of water, as the alewives rush in gut instinct up the slick, steep water stone ladders of the run from Cape Cod Bay to the Upper Mill ponds to spawn in fresh water kettle ponds where they were born. The fish repeatedly are flushed back by cascading water, hitting fishheads on rocks, yet instinctively climbing the ladder again. Bob and I relate to that.

Cognitive reserve in primal nature! My late writing mentor John Hay, considered among the nation's top nature writers, wrote about the Brewster marvel in his inspiring book, "The Run," connecting dots to the survival instinct in all of us. "The fish kept moving up," he observed. "I watched the swinging back and forth with the current, great-eyed, sinewy, probing, weaving, their dorsal fins cutting the surface, their ventral fins fanning, their tails flipping and sculling. In the thick, interbalanced crowd there would suddenly be a scattered dashing, coming up as quickly as cat's-paws flicking the summer seas. They have moved by 'reflex' rather than conscious thought."

Bob and I today are moving by reflex, rather than conscious thought, with an accelerant of humor.

Laughter can be a powerful antidote to dementia -- the pain, conflict, and stress of it. A good laugh, doctors say, reduces tension and can leave muscles relaxed for up to 45 minutes. Laughter boosts the immune system, decreases stress hormones, and triggers the release of endorphins -- the natural drug of choice.

Siri, my droll personal assistant and the knowledge navigator for my indispensable iPhone 5, is getting into the act.

I often ask Siri, "Tell me a joke about Alzheimer's?"

"I can't," she responds. "I forget the punch line."

Bob laughs a grin that obscures the blue ski cap. It's another victory for us. And so we live to fight another day ... And so he did.

POSTSCRIPT: Bob Mumford died Sunday, May 31, after a valiant fight. His candle burns brightly in spirit.

Greg O'Brien's latest book, "On Pluto: Inside the Mind of Alzheimer's," has won the 2015 Beverly Hills International Book Award, and is a 2015 Montaigne Medal Finalist as well as a 2015 Eric Hoffer Category Finalist. He is also the subject of the short film, "A Place Called Pluto," directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, he was diagnosed with Early Onset Alzheimer's. His maternal grandfather and his mother died of the disease. O'Brien carries a marker gene for Alzheimer's. For more information go to: OnPluto.org

This Blogger's Books and Other Items from...