by Greg O'Brien
My phone skills have become equally dyslexic. My iPhone is filled to the brim with numbers, scores of them. I see a name in my contact menu I’m supposed to call, only to find out, just like faces at times, that I have dialed the wrong person, convinced it was someone else. Such is the case with emails.
The disturbing confusion with time and place persists, along with great difficulty in determining spatial relationships; my Jeep has been dented front to back, although I destroyed the evidence with recent bodywork. The social withdrawal can be intense. I had once been a poster boy for the Animal House fraternity, Delta Tau Chi, and now all I want to do is be alone, not quite sure of whom I’ve become and where I’m headed.
The reality hit home years ago in a random Boston moment, a dyslexic day, lots of confusion and rage. I had just been given a new cell phone by a client, who wanted access at all times, with a specialized mobile radio band, keeping me on a short leash. After multiple cups of coffee and a queuing up in the men’s room to take a leak, I forgot about the phone’s then maverick technique. My client, on the two-way radio, began squawking, “O’Brien where are you? What the hell is going on?”
I thought I was hearing voices from my pants. The guy in the urinal next to me, apparently oblivious to the technology, was equally dazed.
Voices continued to rail. “Godamnit, O’Brien, will you answer me!”
Perplexed about what to say, I just shrugged it off, revealing: “Oh, that’s just the little man who lives in my pocket!”
The fellow raced out of the men’s room, dripping along the way.
****
On February 4, 2010, a cold, penetrating night in Boston, I was driving home from a meeting in nearby Somerville, just over the Leonard P. Zakim Bunker Hill Memorial Bridge, beyond the Thomas P. “Tip” O’Neill Jr. Tunnel that runs beneath the City of Boston. The bridge, at a distance, has the appearance of the masts of a schooner, and looking up at the guy wires lighted in blue, it offered the lyrical essence that evening of Samuel Taylor Coleridge’s “The Rime of the Ancient Mariner”:
With sloping masts and dipping prow,
As who pursued with yell and blow
Still treads the shadow of his foe,
And forward bends his head,
The ship drove fast, loud roared the blast,
And southward aye we fled.
So south I fled with a dipping prow. A place as familiar to me as Nauset Marsh, not east toward the Cape, but southward aye. My brain directed me home to Rye on docile Brookdale Place, not to Brewster. Along the way on familiar highway road, the synapse misfired again; I just didn’t know where I was. New territory. The lessons of my mother kicked in: don’t panic, ride it out, and eventually it will come back. Finally, it did. I was now outside Providence at 1:45 am, about an hour from Boston and an hour-and-a-half ride back to Cape Cod. I realized then that I was a bridge too far from Brewster and wanted, in my mind, to return to childhood, but instead I had to stay the course, living the nightmare. Pulling into my driveway at 3:15 am, ever so quietly, so as not to wake my wife, I exhaled—a deep protracted sigh that emptied the lungs, in much the same way my mother had respired months earlier during our dining room table talk after releasing her fear of yielding to Alzheimer’s.
****
Exhalation is good for the soul; the movement of air from the bronchial tubes through the airways is soothing. The thoracic diaphragm relaxes when one exhales, ridding the body of carbon dioxide, a waste product of breathing. In short, it gets the crap out. We all need to get the crap out. Such expiration, as it’s also called, links the mind, heart, and soul, staying grounded in the body. We are beings with parasympathetic and autonomic nervous systems, one purposeful, the other involuntary. In exhalation, the body does what the brain says—come down!
I find myself exhaling often these days, but on bad days, the confusion lingers, like the time when I felt compelled to join a long altar line at Our Lady of the Cape down the street. I was typically late that Sunday for Mass, and my family had gone ahead of me. As I walked into church, a line had queued to the altar. I saw my family sitting in a pew to the left; they were waving at me. I knew the consecration of the Mass hadn’t begun, yet my brain told me to get in line. I could see Colleen, Brendan, and Conor in slow motion shaking their heads. My wife looked the other way. My brain told me to proceed. Others in the church whom I’ve known for decades were staring at me. I looked to the front of the line, and noticed that most were in their late 80s. My brain again told me to stay the course. As I got closer, I realized the call to worship was for the terminally sick. Now in a panic, I tried to discern an exit strategy. Everyone was staring at me. I stayed the course. When I reached the front of the line, two priests hovered over me in compassionate prayer. One asked gently, “Son, what’s wrong?”
I searched for the right words, not knowing what to say. Still in denial about early symptoms of Alzheimer’s, and months before a prostate diagnosis, I blurted out, for lack of a better thing to say: “Cancer!” It was a sobering declaration.
****
“Ireland sober is Ireland stiff,” wrote James Joyce, the distinguished Irish writer and poet. My family toasted the Isle of Mists with throaty zest after the Shannon-bound Aer Lingus flight finally lifted off a rain-soaked JFK runway at 10:30 pm on Sunday, August 22, 2010 after a four-hour weather delay that featured boisterous thunder and angry bolts of lightning. It was an ill-omened start to a family pilgrimage to plumb the depths of our Irish ancestry and, in the process, rediscover one another and revel in the seven deadly sins. We skipped the wrath part: Mary Catherine with Dublin roots, and the kids—Brendan, named after the Irish abbot who, legend says, led a ragtag ban of Irish monks in a leather-hulled currrach across the Atlantic to present-day Newfoundland in search of land promised to the saints; Colleen, a diminutive of the Gaelic cailín, “girl from Old Irish”; and Conor, named after Conor Larkin, the chief protagonist from County Donegal in the classic Leon Uris novel Trinity. Larkin was an organizer in the late 1800s of the then fledgling Irish Republican Brotherhood in the struggle for an independent democratic republic. Conor is the namesake of the present head of the O’Brien clan, Sir Conor O’Brien, the Prince of Thomond, the 18th Baron Inchiquin, and a direct descendant of Brian Boru, the first and last king of Ireland. As for me, I have paternal and maternal roots in Dublin, Wexford, County Louth, and County Clare. I’m all over the place.
With high expectations, the Eire trip was the last time I felt in full command of fatherhood, teetering on an edge, perhaps the last time we felt fully whole as a family. In Alzheimer’s, it is exhausting, grueling, trying to hold it together. I was on my “A” game, but got pulled in during the fourth inning.
The skies cleared as we landed in Shannon, crossing a cerulean blue River Shannon. The tarmac was still wet, but the heavens opened. My son Conor spotted a rainbow, a wondrous spectrum of red, orange, yellow, green, blue, indigo, and violet. “This trip is meant to be,” he declared. Conor was on point. The week would bring the best swath of weather all season, as we plied the West Coast from Galway to the Ring of Kerry.
Driving was befuddling; we’re a right brain family, so maneuvering on the left side was vexing—given the distracting lush green countryside, the ancient stone walls that define centuries, the serpentine narrow roads, and wacky local driving habits. Evan McHugh was correct when he wrote in Pint-Sized Ireland, “When the Irish want to tempt fate, they play Irish roulette. No firearms involved—they just go for a drive.”
Instinctively, I took to the wheel. Bad move. I have great difficulty now with directions, spatial measurements, and just plain driving, even when maneuvering roads I have known for decades. It didn’t take long for Brendan to take over after I had wiped out a long row of orange traffic cones, brushing back one of the Garda Síochána na hÉireann, a.k.a. the local police.
“Get out of the car!” Brendan demanded, yet another passing of the baton in my progression. “You’re not driving anymore.”
Sheepishly, like a guilty young kid, I assumed the shotgun position. I didn’t say a word. I knew the time was upon me. We talked about it.
“We’ve got your back, Dad,” my daughter Colleen said from the back seat.
County Clare was a homecoming. We stayed at Dromoland Castle in Clare just outside Shannon for our last night. The castle grounds, the ancestral home of the O’Brien clan for 900 years, is now a luxury 375-acre estate. The Renaissance castle retains its old-world charm with splendid woodcarvings, stone statuaries, hand-carved paneling, brilliant oil paintings, antique furnishings, a championship golf course, and stately gardens. The reception area was majestic; the front desk had taken note of the reservation.
“Welcome home!” they greeted.
The rooms were noble, with sufficient space for a king’s guard. But quickly, we were off to the bar that looked more like an ancient library than a tavern. Typically clumsy as an ox and not ready for regal prime time, I spilled a glass of good red wine in the bucolic gardens just outside, observing a turret with my daughter Colleen. Upon asking for a refill, I was told, “This one is on your ancestors!”
Later, over dinner, the family was observing the stoic floor-to-ceiling oil portraits of ancestors. “All O’Briens,” our waiter told us, “are an ugly lot!” What a dunce, I thought. Don’t you think the castle is filled with O’Briens?
Our final family fling was a night at Durty Nelly’s in the shadows of nearby Bunratty Castle. There, we made good friends with the locals, likely for the draw of daughter Colleen. I made sure to stand close guard by her. In the meantime, Mary Catherine was having trouble finding the handle on her wine glass, dropping two of them on the ancient stone floor to raucous applause. The shattering echoed throughout. “My Gawd,” one of the older locals exclaimed, “she’s goin’ for a foock’in hat trick!”
Saturday morning breakfast in the king’s dining room before a flight home was a grounding for all of us. Seated in elegant high-back chairs at a white-linen table, in dignified style, I reached for the coffee and cream, then poured the cream all over my eggs, splashing the outer limits of the elegant white stoneware. It just seemed like the right thing to do. A pregnant moment had given birth to quintuplets. We all knew the drill.
That elephant in the room had reared its head again. Hard to deny the long tusk of reality. We talked briefly about the unmentionable, but the weight of a progressive disease can be heavy. Even in denial, on a trip to the homeland. My wife, ever stoic in protecting the kids, laughed as if to say: find the humor in this. The kids were starting to get it. The family pilgrimage to plumb the depths of our Irish ancestry just hit bedrock, hard, yet a solid foundation. That’s the Irish way.
The Irish are often slow to embrace prickly realities below the surface. We can be an emotionally numb lot. Perhaps it’s a survival instinct, dating back to the Viking invasion epochs ago. We generally don’t talk about the ugly side of life. See no evil, hear no evil, speak no evil. We speak no evil when it comes to deeply personal, complicated matters, taking denial to soaring heights until the crash landing of a malevolent diagnosis. Still, many survivors don’t want to engage. And so it is with my wife, a coping mechanism, not as evident in my children. We’re all cut from different trees, more apparent to me than ever on this journey. Mary Catherine keeps me balanced in her rejection of harsh reality, often treating me, in her own fear, as if life goes on forever. It won’t, but I am thankful at times for the delusion; at other times, more and more now, I prefer empathy and candid encouragement to press on. And so I checked what remained of my denial at the entrance to O’Brien castle.
We made our flight to Boston on time. As the boxy Aer Lingus craft lifted above Shannon, over the Cliffs of Moher, and headed out into the Atlantic, I kept looking back, feeling as though I had left a burden behind.
15
OUT TO THE KUIPER BELT
THE KUIPER BELT IS AN ELLIPTICAL ICY PLANE FAR OUTSIDE the orbit of Neptune and billions of kilometers from the sun. It is a long way from Ireland’s Ring of Kerry. The Kuiper Belt was formed from fragments of the Big Bang, spin-off from creation of the solar system, and is home to dwarf planets like Pluto, Haumea (named after the Hawaiian goddess of childbirth), Makemake (the god of fertility of the native people of Easter Island), trillions of anonymous objects, and the mysterious Oort Cloud, a suspected source of comets that flash about our sun. Here, deep into the cosmos, Sedna orbits—the first observed body belonging to the inner Oort Cloud. This remote expanse holds the answers to life.
Answers are impossible to discern in Alzheimer’s; but the metaphors abound. The asteroids, dwarf planets, and the Oort cloud of this disease refract reality. One is left with random manifestations, successions of real-time, mind-bending warning ciphers that serve only to confuse, yet underscore the progression of a beast that attacks without forewarning.
I was seeking answers early in September 2010, on an out-of-body recce mission to the Kuiper Belt. There were none to be found among the cosmic dust. On this particularly dispiriting day, I resolved to take my life.
The drive back from New York after a client meeting on the campus of Readers Digest in Chappaqua was pensive, as I passed through pastoral Greenwich, Fairfield, then on to New Haven, Mystic Seaport, and points north. I was lost in thought, contemplating the vagaries of a new assignment, rewinding tranquil childhood memories in Westchester County, thinking about my family, pondering the aggregate symptoms of Alzheimer’s, and brooding about a fourth prostate cancer biopsy scheduled that afternoon. Prostate biopsies are no fun; far less agonizing, to be sure, than childbirth, but stinging to the point of nausea. My imagination, maneuvering along Route 95 just outside Providence, was in overdrive. I had conjured up a beastly image of a ten-foot surgical needle with the doctor at the handle driving it to its intended delicate and private spot like a rip-roaring jack-hammer. Zap. Zap. Zap!
I fought off the pain in past biopsies by associating the aching din with the sound of Red Sox icon David Ortiz, Big Papi, whacking a home run. The “zap, zap, zap” became a “whack, whack, whack.” This was to be a championship season, I had hoped.
As I passed over the Braga Bridge where the Taunton River meets glorious Narragansett Bay, my attention was drawn east to the 11,248-foot Newport Bridge, a suspension work of art, and then on to the placid waters beyond. I felt in awe, at peace at first, followed by intimidation for what lay ahead. The scheduled biopsy was a transient distraction to escalating horrific memory loss, isolation, and loss of self. I was now deep into a pity party, questioning my future, my value, my essence.
Looking out over to the reflective beauty of Narragansett Bay, in an epiphany of conflict, I screamed out in my Jeep, “Screw it! Just Screw it!” I resolved to focus on my wife, kids, and work, and whatever else happens, it just happens. Screw it. I can’t control the rest, I reasoned, nor could my mom. Gotta learn to walk in faith.
Moments later, I found myself smack behind a slow-moving yellow freight truck. Given an affinity for the color, I drew near, and was drawn to a large inscription on the back of the truck. It read: “You are NEEDED.” Needed was in all caps, a sign perhaps of what was to come.
I felt the presence of God within. Call it what you will; perhaps it was my mother looking after me. Whatever, I felt on hallowed ground. I lingered behind for several minutes, absorbed with the message until I realized I had an appointment with a needle. So I passed the truck, and two miles up the highway, my attention was drawn to a digital sign loop at a local hotel, the kind of rotating message you often see off the highway. There was a message flashing. It read: “Thank you for all you can do!”
I was starting to get the point. About 40 minutes up the highway, as I approached the Bourne Bridge, I was back in my pity party, fretting work, family, and life itself.
“This sucks,” I thought.
A car passed me on the left. It had plates with the state logo: “Live Free or Die.” The vanity plate read, “SECURE.”
I felt as th
ough the Lord had taken a two-by-four across my head as I pulled into the urologist’s office. Immediately, I emailed my brother-in-law, Lou, in Phoenix, and a close Kansas City extended family member Jerry Riordan about it, both strong in faith, but I would need yet another wallop.
Whack, whack, whack. Big Papi had a banner afternoon. After the biopsy, I began bleeding from those secret places, front and back, a normal flow at first for the procedure, then the floodgates opened over several hours. I called the doctor twice and was told this would pass, but the only thing passing were pints of blood. I didn’t call back again; my self-absorption with pity endured. I thought I had a way out. The discharge cycle, a hemorrhage now, went on for about 24 hours, a loss of an estimated six pints of blood; my exit strategy, I thought, without the guilt of a more hands-on suicide. I saw no upside in the direction of my life, and so chose not to tell anyone about the full extent of the hemorrhaging, not even my wife.
But “nothing in creation is hidden from God’s sight,” as Hebrews 4:13 notes. I should have remembered that New Testament verse drilled into my head as a youth.
I knew in my heart that if I fell asleep, I might never wake up, and that I didn’t have the right to end it here. And so, with the family asleep and my blood count on empty, I drove myself, dizzy and disorientated, to Cape Cod Hospital about 20 miles away, testimony again to my diminished state of mind and to the grace of God. The emergency room nurse took one glance at my ashen face, sat my sorry ass into a wheelchair, and within seconds, whisked me to an emergency room cubicle.
I instructed the nurse not to call my wife. I wanted to ride this one out alone, particularly if I was heading to Pluto, as I had hoped, for the final trip. To my horror, I was directed to the same emergency cubicle where my father had been taken years ago with internal bleeding, and where my mother, tired of fighting, finally gave in to the demon Alzheimer’s. In the cubicle, I bled out another two pints. The average person carries about eight to ten pints of blood; with a loss of four pints, time to call a priest, minister, or rabbi. Losing half your blood, medical experts agree, is a sure way to expire. I had lost an estimated eight pints of blood in all. I was on empty again.