On the Battlefield of Alzheimer's

So I live in the moment and have learned to speak and write from the heart, a journey we all take from the crib to the grave.

By:
Greg O’Brien ’72

The early 1970s was a time of precipitous change: the Beatles were breaking up; Vietnam was exploding; four students were killed during a protest at Kent State, another nine wounded by Ohio National Guardsmen; the Watergate scandal emerged; and the lead singer of the Doors, Jim Morrison, was found dead in a bathtub in Paris. Bye-bye, Miss American Pie.

At Fairfield University in Connecticut, the Jesuit school where I studied for two years, I vigorously demonstrated against the war and a surfeit of inequalities that sadly linger. Right or wrong, we shut the school down, then spent months on the road in an unremitting door-to-door campaign to edify on our principles. My God, the chutzpah of the young! As Baby Boomers, we first played by the rules, then broke the rules, then made new rules. We took no prisoners. Battle fatigued, I was looking for a way out.

I found it at Gates Pass. The view from this rocky chiseled crest of the Tucson Mountains — about 3,000 miles and, culturally, a planetary system from Cape Cod’s Great Outer Beach where I roamed as a boy, a place, Henry David Thoreau said, one can stand and put all of America behind him — was, and still is, soothing to the soul.

'Today I’m getting even with Alzheimer’s — not for me, but for my children, for you and your children, and for all those who will face this demon prowling like Abaddon.'

I came to the University of Arizona in 1970 to study history, government, psychology, and journalism, and to put all of America behind me. The quiet innocence of the Tucson Basin, as sunset floods the valley, is piercing to the mind. Lined with a platoon of inspiring saguaro cactus that stand like soldiers on the watch, with the Santa Catalina Mountains to the northeast, the Rincon Mountains to the east, and the Santa Rita Mountains to the south, it boasts idyllic thinking weather for a confused Baby Boomer trying to find himself amid the folly of the real world.

As often as I could, I sat quietly at sundown on the highest ridge of Gates Pass, drinking in the solitude of this splendor. From my reflective roost, I could hear the angels sing.

Today, 42 years later, I am still confused. My muddle is of the mind, and I cling to the embrace of Gates Pass. Five years ago, at age 59, I was diagnosed with early-onset Alzheimer’s disease after a serious head injury that doctors say unmasked a disease in the making. Years ago, I had a front row seat as Alzheimer’s devoured my maternal grandfather and my mother. Now it’s coming for me.  

And so I’m pushing back like a battering ram against the stereotype that Alzheimer’s is merely the horrid, inevitable final stage. While the end stage is devastating, the beginning and middle stages are a lonely, painful journey, the long kiss goodbye that often begins 15 to 20 years before diagnosis, with vile symptoms akin to having a sliver of your brain shaved off every day. Alzheimer’s robs one of self; it infantilizes. 

This could be your story some day. Don’t assume it won’t. The numbers don’t lie. More than five million Americans have been diagnosed with Alzheimer’s or a related dementia, and about 35 million people worldwide — numbers expected to triple in years to come. Stephen King couldn’t have devised a better plot. 

But the Irish never get mad; they get even. And today I’m getting even with Alzheimer’s — not for me, but for my children, for you and your children, and for all those who will face this demon prowling like Abaddon. Braced with the stinging diagnosis, I chose muscle memory over pity and shaking my fist at God. So I began taking notes, more than a thousand pages of them, detailing memories, the progression of my mother’s disease, and my own walk. 

I was a journalist for more than three decades; my muscle memory guided me in writing On Pluto: Inside the Mind of Alzheimer’s, a first-person account of an investigative reporter embedded in the mind of the disease, chronicling the progression of this monster. A book about living with Alzheimer’s, not dying with it. The death part comes later.

 

'It is dispiriting to lose a thought in a second, to stand exposed, and yet stand one’s ground.'

All the darkness in the world, my mother taught me, cannot snuff out a single candle. I know the darkness. It’s a place I call Pluto, in allegorical terms, a reference from my early days as an investigative reporter at the Arizona Republic when I went deep “off-the-record” with sources. “We’re heading out to Pluto,” I would say, “where no one can see you or can hear what is said.” 

The Pluto metaphor still works for me, more than ever, as I seek the peace of isolation and pursue the urge to drift out as Alzheimer’s overcomes at intervals. Pluto is the perfect place to get lost. Its orbit, like Alzheimer’s, is chaotic.  

Daily, I am lost in this disease that wafts its impenetrable fog on the brain, like the night two years ago, driving home to Cape Cod from Boston — a route I know well, and as memorable to me as a Rob Gronkowski down-and-out pattern at Gillette Stadium. In a haze of Alzheimer’s, I didn’t know who or where I was until 2 a.m., when I was just outside Providence, R.I., heading to Connecticut. Then there was a time last summer when I drove my lawn tractor through the woods near my home in an out-of-body experience, thinking I was supposed to cut someone’s lawn. Instead, I ground stumps in the brush until the blades fell off. And three years ago, I allowed myself to bleed out eight pints of blood after a prostate cancer biopsy went horribly wrong, and I didn’t tell anyone because I thought exsanguination might be my exit strategy from the horrors of Alzheimer’s. 

The litany goes on, moments of shattering terror when one is incalculably lost in familiar places, not recognizing family and close friends. Or when I hurl a 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 I feel the dread of hallucinations, those spider-like creatures that crawl regularly, some in sprays of blood, along the ceiling at different times of day, sometimes in a platoon, turning at 90-degree angles, then floating toward me; or when I push open the hot glass door to the 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 I’m alone, nobody cares, and the innings are beginning to fade. 

At times today, close to 60 percent of my short-term memory is gone in seconds. It is dispiriting to lose a thought in a second, 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.  

Doctors tell me I’m working off a “cognitive reserve,” a backup tank of inherited intellect that will carry me in cycles for years to come. They tell me to slow down, conserve the tank. It’s lights out, they warn, when the tank goes dry, just as it was for my mother. In laymen’s terms, the “right side” of my brain — the creative, sweet spot — is intact, for the most part, although the writing and communication process now takes exponentially longer. The left side, the area of the brain reserved for executive functions, judgment, balance, continence, short-term memory, financial analysis, and recognition of friends and colleagues, at times, is in a free fall. Doctors advise that I will likely write and communicate with declining articulation until the lights dim, while other functions continue to ebb. Daily exercise and writing are my succor to reboot and reduce confusion. I try daily to stay locked in, as a missile is on target, but “locked in” likewise is a medical disorder in which an individual who cannot speak because of paralysis communicates through a blink of an eye. On days, I find myself between definitions — using every available memory device and strategy, cerebral and handheld, to communicate. 

My life has become a strategy. I have a playbook, a script, for everything. Sometimes the stratagem is just showing up, other times it’s deflection, more often it’s an ongoing quest for excellence, understanding as best as possible the new boundaries. I have a formidable enemy — the mind. It used to be my best friend. I don’t see any chance now for reconciliation. So I live in the moment and have learned to speak and write from the heart, a journey we all take from the crib to the grave. The heart is the place of the soul and survives, I believe, for eternity. 

As a cub reporter, I learned the art of strategy from a Maricopa County Superior Court judge in Phoenix, who mentored me in the art of court reporting and told me to keep asking questions.

“Keep at it until you get the answer,” she counseled.

I follow Sandra Day O’Connor’s sage advice every day. 

Like Justice O’Connor’s instruction, the lessons of Gates Pass do not escape me. I’ve learned through the lens of Alzheimer’s to stop and smell the bloom of a saguaro. I will never forget the scent and the enduring peace of the Tucson desert.