by Greg O'Brien
Isn’t he a bit like you and me?
Looking around a room, one can learn legions from what’s displayed on the walls. They paint “word pictures.” Everywhere, there are historical, framed front-page stories and magazine covers from The New York Times, The New Yorker, Washington Post, the Daily News, the Los Angeles Times, the old Boston Herald Traveler, Boston Record, and one from the Yarmouth Register, dated July 12, 1861, reporting Abraham Lincoln’s declaration to Congress of the Civil War. The office is a news museum of sorts, with news clippings of the firing on Fort Sumter, JFK’s assassination, Nixon’s resignation, Anwar Sadat’s murder, the shooting of Pope John Paul II, the Shuttle explosion, the 9/11 attacks on the World Trade Center and Pentagon, and much more. In a corner is a frayed copy of the July 21, 1969 Burlington Free Press announcing that man has walked on the moon. Below the fold, toward the bottom of the page, is a photo of a 1968 Oldsmobile Delmont 88 that took a horrible turn for the worse into history off a narrow dike bridge on Martha’s Vineyard. The caption directs readers to an inside story, the luck of the tragic Irish: Ted Kennedy’s “Chappaquiddick incident,” the death of Mary Jo Kopechne, buried on page six.
On the walls are news reports and magazine stories the man wrote years ago for publications—stories on Tip O’Neill, Jimmy Carter, the Kennedy family, Bill Clinton, the federal court system, political corruption, and investigative stories on the mafia. On a wicker chair nearby is a profile of a former Phoenix Superior Court judge, who in the late ’70s mentored him at The Arizona Republic in the art of court reporting—Sandra Day O’Connor. Years later, President Ronald Reagan appointed the Stanford Law School graduate who grew up on an Arizona cattle ranch as the nation’s first woman Supreme Court Justice. Judge O’Connor had urged her student repeatedly before leaving for Washington to keep asking questions.
“Keep at it until you get the answers!” she counseled.
And he does today.
Everything in this room tells a story, purposefully arranged in almost chronological order, as if to remind, almost reassure, its occupant of a timeline, a collective long-term memory, the hard drive of one’s life, the answers—from historic events, to family photos, to memorabilia. In a curious contradiction, there’s a hint of eclectic New York and Boston family roots, which clash over sports: framed headlines of the New England Patriots, Red Sox, Boston Celtics, and Boston Bruins, alongside classic black and white photos of a young Mickey Mantle, Yogi Berra, Joe DiMaggio, and Lou Gehrig. On a shelf below, a 1917 photograph of a sullen Babe Ruth in a Boston Red Sox uniform stares out blankly. There is a quote of Ruth’s below it: “Never let the fear of striking out get in your way.”
Curiously enough, tacked to an adjacent wall is a tale, author unknown, of an Irishman’s dying wish with two strikes against him.
His Irish friends relate:
An elderly gentleman lay dying in bed. While suffering the agonies of a pending death, he suddenly smelled the aroma of his favorite chocolate chip cookies, wafting up the stairs. He gathered his remaining strength and lifted himself in the bed. Leaning against the wall, he slowly made his way out of the bedroom and with even greater effort, gripping the railing with both hands, he crawled downstairs. With labored breath, he leaned against the door-frame and gazed into the kitchen. Were it not for death’s agony, he would have thought himself already in Heaven for there spread out on wax paper on the kitchen table were literally hundreds of his favorite chocolate chip cookies.
Was the elderly Irishman in Heaven or was it one final act of heroic love from his Irish wife of 60 years, seeing to it that he left this world a happy man?
Mustering one great final effort, he threw himself towards the table, landing on his knees in a rumpled posture. His parched lips parted; the wondrous taste of the cookie was already in his mouth, seemingly bringing him back to life.
The aging and withered hand trembled on its way to a cookie on the edge of the table when he was suddenly smacked with a spatula by his wife …
Fuck off, they’re for the funeral!
There will be no funeral today, only an epiphany of what’s to come, and with the luck of the Irish, maybe a few steaming hot chocolate chip cookies, as denial gradually gives way, over time, to reality. Stephen Stills had it right: “Love the one you’re with.”
I do.
For I must.
For this man is me.
2
MR. POTATO HEAD
A SEA OF SPRING DANDELIONS OUTSIDE THE BARN IS LEANING toward the bay in a stiff wind, a wave of yellow. They capture my attention. I am drawn to the cluster. The dandelion—a French derivative for “dent de lion,” the tooth of a lion, with its sharp yellow leaves and believed to date back 30 million years—is born as a flower, becomes a weed, dies slowly from the head down; then its white, fluffy seeds, gentle blowballs, genetically identical to the parent plant, blow away to pollinate the world.
And so it is with Alzheimer’s.
Ralph Waldo Emerson wrote in his essay Fortune of the Republic, “What is a weed? A plant whose virtues have not yet been discovered.” Perhaps Emerson, who succombed to Alzheimer’s, was contemplating the dandelion—a free spirit of a plant, a symbol of courage and hope, with relevance in medicine, legend, and in Christianity. In medieval times, the dandelion, a bitter herb, was a symbol for the crucifixion of Christ.
The virtue of Alzheimer’s is a hope for redemption—not here for now, but beyond.
Sitting alone in my office, deep in thought, looking out over an acre of overgrown lawn, sprinkled with dandelions, and surrounded inside by the hard copy of long-term memory, a place where confusion gives way to clarity and humor resurrects, I remember the yarn of the septuagenarian who reluctantly arranged a medical exam after years of denial:
“I have some bad news for you,” the doctor says after a battery of tests. “You have cancer!”
“That’s dreadful,” the man replies.
“It gets worse,” the doctor notes.
“You have Alzheimer’s!”
The man pauses to collect his thoughts, then says with full confidence, “Thank God, I don’t have cancer!”
I laugh, but it’s more an enigma than a joke.
Some inherit stock portfolios and buckets of cash. Others, hand-me-downs. I’ve inherited my folks’ medical records: my late father, Francis Xavier O’Brien, a mulish second-generation Irish American and a Bronx boy, had prostate cancer, complicated by critical circulation disease and an onslaught in final days of dementia; my mother, Virginia Brown O’Brien, with second-generation Irish roots as well, the hero of my life, died of Alzheimer’s in a bruising, knockdown prizefight of a battle, as her father had decades earlier.
I have been diagnosed with both—cancer and Alzheimer’s.
I’ve declined cancer treatment for now, on grounds that no one by choice wants to go to a nursing home. I saw what Alzheimer’s robbed from my grandfather and my mother, and learned earlier in life about “exit strategies” from seasoned venture capitalists in New York and Boston. Alzheimer’s, to me, is far more distressing than my cancer. I’m looking now for an exit strategy.
You can’t remove a brain.
Daily, I return to my office on the Cape in search of a past that has more relevance to me than the present or a future. There is great peace here among the elements of history, humor, and faith—cornerstones in my life. I look for strength from mentors, past and present, referenced in various clips and photos on the walls: celebrated country editors like the late Malcolm Hobbs of The Cape Codder, a surrogate father figure: the distinguished Henry Beetle Hough of the Martha’s Vineyard Gazette, and my late neighbor John Hay, considered among the nation’s finest nature writers, on par with Henry David Thoreau. Hay was a man who could paint brilliant word pictures with the stroke of a typewriter key as a master does with a brush. I was blessed in spending time with them, absorbing like a sea sponge as they taught me to write. They all have become an enduring part of what I believe a good writer, a perse
vering individual, ought to be. Perseverance separates the artist from the dabbler, editor Hobbs once told me. So it is with life; you press on.
Near my writing desk is a copy of the best seller, The Perfect Storm, known in these parts as the Halloween Nor’easter of 1991. I first met author Sebastian Junger as a young man when he was a budding scribbler, soon to be star, and I was an editor at The Cape Codder, instructing the freelancer in the art of reporting, letting a good story tell itself. Junger, an excellent student with extraordinary drive, excelled beyond all expectation. I find myself today in the midst of my own perfect storm—a rogue wave of fear, perhaps a life unfulfilled.
On a bookcase in the corner are photographs of my children—Brendan, Colleen, and Conor, and my wife Mary Catherine—all reminders of a past and a fleeting present. There is a recent precious photograph taken by Colleen at an Alzheimer’s fundraising marathon that she ran in Boston. The photo is of a pure white running cap alongside two purple wrist bands, the symbolic color of the battle against Alzheimer’s, all arranged on a stark linen table cloth. She wore them in the race.
The cap is inscribed, “Dad, this is for you.”
****
Dementia runs in my family, practically gallops on some branches of the family tree. My maternal grandfather, George Brown, died decades ago of “hardening of the arteries,” a code word then for Alzheimer’s or vascular dementia. I had a chilling front-row seat as a child, and later, head-on with my mother’s slow progression of a death in slow motion. My dad, in the waning months of a complicated medical history, was also diagnosed with dementia, and his only brother, my uncle, now suffers from a variant of Alzheimer’s. The images are piercing.
In 2009, I was diagnosed with early-onset Alzheimer’s, several years after first experiencing early symptoms and after a horrific head injury sustained years earlier in a bicycle accident that doctors say “unmasked” a disease in the making. Dumbass that I was, still am, I wasn’t wearing a helmet at the time. Repeated clinical tests, an MRI, and a brain scan confirmed the diagnosis. The brain (SPECT) scan revealed “a large deficit involving the temporal parietal and also occipital lobes bilaterally,” as noted in the blunt 80 pages of my medical records. That’s code for pack your bags. Another test revealed that I carry a gene called ApoE4. Present in about 14 percent of the population and implicated in Alzheimer’s, ApoE4 is a known genetic risk for the disease.
Inheritance indeed is a mixed bag. Doctors tell me that I’m working off a “cognitive reserve,” a reservoir of inherited intellect that will carry me in cycles for years to come. They tell me to slow down, conserve the tank. I’m not sure how much reserve remains; I guess I’ll find out how smart my mother was. I’m hoping she was a genius. The brain I inherited is like an old Porsche engine. It has to crank at high speeds, or it sputters. When I run out of gas some day, I hope I pull off the road to a place with a water view. For now, I keep driving, foot to the floor.
I strive to keep the focus today on living with Alzheimer’s, not dying with it.
But the view within is out of sync many days. The “right side” of my brain—the creative sweet spot—is mostly intact, although the writing and communication process now takes much longer. The left side, reserved for judgment, executive functions, and financial analysis, is in a free fall on bad days. Doctors advise that I will likely write and communicate, with diminishing articulation, until the lights go out, as other functions continue to wane.
“Plan for it,” they have advised me.
But as the great Bambino once said, “You can’t beat the person who won’t give up.”
These demons, I keep telling myself, don’t know who they’re fucking with!
Years ago, I thought I was Clark Kent, but today I feel more like a baffled Jimmy Olsen. And on days of muddle, more like Mr. Magoo, the wispy cartoon character, created in 1949, who couldn’t see straight, exacerbated by his stubbornness to acknowledge a problem, or like Mr. Potato Head, with the wacky pushpins and all. The genius of Brooklyn-born investor George Lerner in the early 50s, the original Mr. Potato Head sold for 98 cents, was the first toy ever advertised on television, and came with pushpin plastic hands, feet, ears, two mouths, two pairs of eyes, four noses, three hats, eyeglasses, a pipe, and eight felt pieces resembling facial hair. Fifty years ago, Hasbro provided a plastic potato body, given complaints of rotting vegetables.
I think of myself now as Mr. Potato Head with a rotting head and stick-on body parts, depending on my mood and the brain’s diminishing ability to function.
Before the onset of Alzheimer’s, I thought of my brain as a large depository, a dumping ground of sorts, a large storage bin for stashing a cornucopia of politics, current events, sports, trivia, and points of view that nobody really cares about but me. In Alzheimer’s, the brain atrophies; it shrinks radically, a shrinkage of brain tissue. And I always thought shrinkage was what happened to guys after a dip in a cold ocean.
“Getting old ain’t for sissies,” Bette Davis once opined. She was spot on. We all need to put on our big boy and big girl pants.
****
Daily medications serve to keep my engine in tune and slow a progression of the disease: 23 milligrams daily of Aricept, the Cadillac of Alzheimer’s medication, the legal limit; 20 milligrams of Namenda in a combined therapy that serves to reboot the brain; 50 milligrams of Trazodone to help me sleep; and 20 milligrams of Celexa (Citalopram) to help control the rage on days when I hurl the phone across the room, a perfect strike to the sink, because in the moment I can’t remember how to dial, or when I smash the lawn sprinkler against an oak tree in the backyard because I can’t recall how it works, or when I push open the flaming hot glass door to the family room wood stove barehanded to stoke the fire just because I thought it was a good idea until the skin melts in a third-degree burn, or simply when I cry privately, the tears of a little boy, because I fear that I’m alone, nobody cares, and the innings are starting to fade.
Hey, I’m not stupid, nor are others with Alzheimer’s; we just have a disease.
But on particularly down days, in between moments of focus, I feel a bit like a svelte stand-in for Curly Howard of The Three Stooges, lots of running in circles—“nyuk-nyuk-nyuk … woob-woob-woob!” Alzheimer’s is a sickness that runs in circles or meanders for an eventual kill. It’s analogous to the prototypical arcade game Pac-Man in which a pie-faced yellow icon navigates a maze of challenges, eating Pac-dots to get to the next level. While the iconic video game was designed to have no ending, there are no “power pellets” in Alzheimer’s to consume the enemies of ghosts, goblins, and monsters, as this Pac-Man in slow motion consumes brain cells, one by one.
Game over!
“You’re a pioneer,” a counselor once urged me in a men’s early-onset Alzheimer’s support group, speaking before a gathering of lawyers, engineers, architects, and a minister—all diagnosed with the disease, and individuals as accomplished as one would find anywhere. “Take good notes,” he urged us.
I have.
Having witnessed the demise of family members, seen the anguish firsthand inside nursing homes, felt the disconnect of dementia in intimate terms, I’ve overcome a reticence to speak out. There was a time when I worried about what family, friends, colleagues, and clients would think or say. No longer. I suppose one could say that I’m outing myself now. Gore Vidal once observed, “Style is knowing who you are, what you want to say, and not giving a damn.”
I don’t give a damn, if that’s what it takes to get the word out.
As any writer knows, solid reporting follows a stock of knowledge. So, I’ve studied the brain to the extent that I can and have learned, over time, that it is the most energy-consuming part of the body; it represents about two percent of the body’s weight, but has the raw computer power of more than 16 billion times the number of people on Earth. Without sufficient brain power, some suggest, we’re like astronauts on a space walk whose lifeline has just been cut. We drift to the ends of the universe. Ou
t beyond, to Pluto.
Boomers will drift, facing an unimaginable epidemic of Alzheimer’s and related dementias, in projected numbers seven times greater than cancer or heart disease, whose critical research and funding starkly outpaces Alzheimer’s tenfold. There are an estimated 35 million people worldwide today diagnosed with Alzheimer’s or a related dementia, an estimated five million in the U.S. afflicted with Alzheimer’s, and predictions of up to 13.8 million Americans diagnosed with the disease by 2050.[λ]
Researchers suggest new ways of combating the disease. Alzheimer’s in the making must be stopped long before it damages the brain, doctors say. Research shows that once an individual begins to lose synapse (the brain structure allowing a neuron, a nerve cell, to pass an electrical or chemical signal to another cell), and once neurons are lost, the brain cannot recover. Alzheimer’s starts long before symptoms are apparent to others, perhaps ten or more years earlier, and if diagnosed early and treated with medications before loss of synapse, the progression may be slowed, although it cannot be stopped, as doctors are learning.
Part of living with Alzheimer’s and slowing the progression is in the daily training regimen to accelerate synapse. Consider the jaggy dendrite we learned about in high school biology—a spine or tree-like projection of a neuron that passes signals to other brain cells. Exercising the brain, experts say, builds new dendrites, pathways that create alternate routes for synapse that can help one function with Alzheimer’s for longer periods, while other neurons are dying off. In short, I believe, one can re-circuit the brain to receive and transmit information, staving off, for a time, some of the more horrific symptoms of this disease. But in the end, the neurons go dead.