On Pluto (27 page)

The memory is still vivid. If you squint, you can see Pluto and beyond from the Vineyard.

****

“Memory is everything. Without it we are nothing,” observed neuroscientist Eric Kandel, winner of the 2000 Nobel Prize for his groundbreaking research on the physiology of the brain's capacity for memory. Memory is the glue, Kandel said, that binds the mind and provides continuity. “If you want to understand the brain,” his late mentor, eminent neurologist Harry Grundfest, counseled him, “you're going to have to take a reductionist approach, one cell at a time.”

Cell by cell, Kandel took the brain apart. Had he dug a bit deeper, he might have found that memory isn't all that it's cracked up to be. While memory offers delineating context and perspective, it doesn't define us. Definition is found in the spirit, in the soul, but one must dig for it. “An unexamined life,” Socrates once said, “is not one worth living.”

I was in a circumspect mood on the way with Mary Catherine to snug Camden, Maine to celebrate her 61
^st
birthday in late August 2013, stopping off for the night in Portland, a maritime city set on a hill downwind from the Atlantic. Early the next morning, outside the red brick Portland Regency Hotel, the seagulls were dive bombing the downtown in a mock scene from Alfred Hitchcock's masterpiece,
The Birds.
The sun was bright at 6 am, lighting up the cobblestone streets; the air was crisp with a hint of fall on this pure, idyllic morning. Even the
Portland Press Herald
breathed of innocence. Its lead headline on the local and state page reports, “Dunkin' Donuts Tries New Paper Cup.”

It's a story about new paper cups designed to mimic plastic foam by keeping the coffee warm in the cup, “cool on the outside.” I was feeling cool on the inside this morning, as I looked about me and began to drift, caught again in a time travel. Soft music from the Regency lobby drifted outside to a nearby park
bench where I sat with my back to the sea. Oldies were playing. I heard the Lennon/McCartney song,
Yesterday
, and was drawn to it.

Yesterday, I was flush with hope; today, I'm adrift in thoughts and images I can't seem to control. They rule me. Often, I just go with the flow. I've acquired a few techniques along the way. One of them is to learn from nature.

You can smell the sea on the road outside Camden. West Penobscot Bay with the secluded archipelago Fox Islands in the distance at the edge of the Gulf of Maine frames a swath of blue that runs endlessly in a way to make one think the world is flat. The archipelago, with its jewels Vinal Haven and Hurricane Island, was first inhabited in 3300 BC by Native Americans called “The Red People.” The rocky coast of Camden and neighboring Rockport, an artistic, cerebral town of about 3,000, if you count the living and the dead, is a place of mind-numbing perspective. Nature overwhelms here, bringing one to the realization of being surrounded by something much larger than one's essence. There is great security in knowing this, even more for those with Alzheimer's.

Sitting by myself on a porch in Rockport with white columns, mahogany railings, and 180-degree views of the bay, I come to understand that I'm not alone. This classic Maine cottage, owned by my brother-in-law, Charlie Henderson, a retired Chicago money manager, stretches the definition of cottage with its 6,000 square feet of Down East elegance. It seems to me more of a biblical ark—300-cubits long, 50 wide, and 30 high—than a home. As I look out over a remnant of the world's animals, I spot the graceful flight of two ospreys. The majestic sea hawks, weighing about four pounds, with wing spans up to six feet, have a human element to them in instinct and in species. Ospreys are the single-living species in the animal kingdom that exist worldwide. A bird of prey, they mate for life, are nesting home bodies, tediously care for their young, and have
voracious appetites: a diet of freshly caught fish. I watch the pair of ospreys practice diving runs over the bay. They fly in circles in tighter orbits, almost like the cone of a tornado, then they strike with wings tucked in an explosion at the surface of the bay. They snatch their prey with fighter-pilot visions from behind, and with sharp talons that act as fishhooks, lifting the prey to the heavens in aerodynamic flight with the fish head first. Then it's back to the nest for supper. The nest, the size of a Volkswagen bug, sits atop a spike on a 50-foot pine with a commanding view of West Penobscot Bay. My brother-in-law tells me that the nest was destroyed four years ago in a pounding nor'easter. The mating ospreys rebuilt the nest the following spring, twig by twig. The mother, he says, sat in what was left of the nest, while the father flew in building materials. She was cawing at him as if to complain, “Wrong size!”

But, like humans, the eyes and instinct for survival of ospreys are often bigger than their stomachs. The Irish poet William Butler Yeats used the wandering osprey as a symbol of sorrow in his 1889 work,
The Wanderings of Oisin and Other Poems.
At times, its prey is so heavy that the osprey can't lift it. Their fish hook talons can't release, and they are pulled to the sea and drown.

Nature has taught me legions today. Even in death, survival is ever pursued.

****

Back on the Cape, days later at the end of a frenetic summer, I sit in my office with my collection of memories, and the sounds of silence are everywhere. Lessons of the journey invite the stillness. I've come now to understand that Alzheimer's is not about the past—the successes, the accolades, the accomplishments. They offer only context and are worthless on places like Pluto. Alzheimer's is about the present and the struggle, the scrappy brawl, the fight to live with a disease. It's being in the
present, the relationships, the experiences, which is the core of life, the courage to live in the soul. It doesn't matter much to me anymore that I don't remember names or faces, that memory is a lost art, and that I must employ improvisations daily, the tricks of spontaneous intervention. I am always intervening on my own behalf, just to steady the boat—trimming the sails, looking for the
terra firma
of life, simply to discern where I am. Only to find that a higher power is at the tiller.

All too often, those with the disease have become voiceless, locked in their own insecurities and symptoms, and misunderstood by those who just don't want to go there. Like every man and woman, these time travelers in disease need guidance, acceptance, trust, and love. So, go there with them at times to Pluto, try to fathom their journey. It's not such a bad place. We can all get to Pluto; it's just that some of us are not coming back.

In a stretch, Alzheimer's is a form of cognitive dissonance. In a state of dissonance, individuals often feel “disequilibrium,” frustration, dread, guilt, anger, embarrassment, anxiety. And so it is with Alzheimer's. All at once. Perhaps one might understand the denial, the deflection of Alzheimer's: like the ceramic elephant from Santa Fe in my office.

Within weeks of my return, the herd was thundering again in a series of chilling manifestations.

****

The elephant emerged again today with sad words that a close college buddy from the University of Arizona, Pat Calihan, had died of dementia. A Phoenix native, Pat excelled in sports, friendship, and in life. He was an Irish storyteller, a mentor to many, a man with a tenacious work ethic and steadfast integrity. We shared many good times over the years on the playing fields, on the ski slopes of the Mogollon Rim, and in the pubs—talking about life, death, and all that happens in between. Pat was an everyman, with an innate ability to connect with people. A
handsome dude, who in his youth had sunny blond hair and eyes the color of soldier blue; Pat had game. In college, we gave him the enduring nickname of “Whetto,” and for reasons of political correctness, I won't disclose why. But the tag stuck, as his zest for life ever deepened.

Years ago, Pat intuitively knew something was wrong and tried to deflect it. Others close to him observed it, as well. The neurons weren't firing right, but still Pat fought on. In time, the diagnosis came like a death notice: an accelerated form of dementia. Pat, still “Whetto” in spirit, began to fade. He never gave up the will to live, until life itself snatched the will from him. As his obituary noted: “Pat was stricken in the prime of life with an ailment that eventually took away his cognitive abilities but never his thirst for life. But not his soul, not his being; never complaining, never compromising.”

The end came after years in a nursing home. There were no ribbons, no television commentaries, no callouts. I heard about Pat's passing from my wife over Sunday coffee on the back deck. She had just received an email. Word of Pat's death took time to work through my neurons, trying to grasp what just had happened. I had lost a close friend that day, a brother in early life. His unwavering, loving wife, Becky, his children, his loyal brothers, and family at large, have lost a great champion.

How many more, I wondered? Too many, it turns out.

A month later, I lost another friend to Alzheimer's, a man named Hilly. I had visited him periodically to buck him up. His caregiver, a childhood friend, told me that Hilly, in his final days, couldn't discern the difference between breathing and eating. So, he gave up on both. The news—the stark image of it—still stuns today. I didn't sleep all night.

When will the escalating deaths from Alzheimer's be enough to turn the tide for more research and a public outcry to make this monster stop? The time is now.

****

I haven't shaken the news, but instead have seized the blessing that Pat and Hilly, like my mother, are free now. The realization has been comforting, though disorienting in a series of aftershocks, like ghosts of past, present, and future in Charles Dickens'
Christmas Carol
.

The night after Hilly's death, I had a dream, still imbedded in my mind. In the dream, I had moved to a new house. My wife took me there, and at first I thought I was back in Arizona. I wondered how she had ever convinced me to leave the East Coast, then I realized that I wasn't in Arizona. The landscape was green, pastoral with rolling verdant hills like the fields of Vermont, Maine, or Ireland—special places to me—tall oak trees, some hedges, blue skies. I worried how we ever got a mortgage for this mansion-like old stone home, given I have no bank credit. I ask Mary Catherine about it, and she told me that a caring friend had worked it all out. Not to worry. The house was rambling, and I talked to her about its great potential. Surprisingly, I was content here; it felt like home.

I then looked to the front yard—a wide swath of green grass, dotted with marble and granite tablets. I realized then to my surprise, I'm living in a cemetery, but I was fine with it. No fears, just peace. I then took a walk by myself, down a path on the right side of the house, surrounded by the most dense forest I had ever seen. I realized in the moment that I wasn't in a temporal place. It had the of feel of Lewis Carroll's
Looking Glass
; the birds, the animals, and insects all talked, similar, at times, to hallucinations I've experienced in Alzheimer's. I engaged them. These were not demonic figures, and I enjoyed the conversation. Fully relishing it.

I returned to the house, entering through the side yard. I was amazed at the number of tombstones I saw along the way and in front of me. Rows and rows of them, perfectly arranged. As I walked toward the front door of the stone house, I touched one of the tombstones in full confidence, patting it on the side
and on top, saying to myself:
I'm good with this.

When I returned to the house, my wife was gone. I was by myself. Then I woke up.

****

Days later, I told my friend Dr. Conant, of the dream. We talked about it over coffee on his back deck overlooking Cape Cod Bay early on a Sunday morning in late summer, as a gentle southeast wind slapped the surf against the shoreline. The color of the bay was as blue as the autumnal equinox sky. After small talk of baseball and football, Barry and I moved to more pressing matters.

Barry now is fighting pancreatic cancer, and we spend much time together in deep discussion of life and death. He has a five-percent survival rate, although I keep reminding him that, ultimately, we all have a zero survival rate. I have manly love for Barry. While our perspectives are diverse in places, we meet at the tangent of friendship and caring, as all friends should, talking about the joy of being free of a disease, yet accepting what lies beyond. I've learned, over the years, that truth is a matter of perspective. We'll all find out one day who's right.

I tell Barry the story of my crusty country editor and mentor Malcolm Hobbs, who, many years ago, had wrestled with death. Toward the end, Malcolm told me that he wished he had a faith, that he was afraid of dying. As a rube 27-year-old, I told him that it was never too late to embrace a faith. Malcolm, a Renaissance man and an accomplished sailor, was the embodiment of an intellect that I sought dutifully. On his deathbed overlooking Arey's Pond in South Orleans, he told me of a dream of being swamped in a boat and reaching out for a secure hand. I told him to keep reaching out. The following morning, he said he had reached for the Universe and found a power far more commanding than he. Call it what you want, but Malcolm was at peace. The next day, as he was looking out over the pond on a frigid
March day with a thin coat of ice on the roiling waters, a single white dory sailed from east to west. Malcolm, his wife Gwen, and daughter, Janie, saw it in awe.

Malcolm immediately sat up in his bed.