The Old Testament book of Ecclesiastes, Chapter Three, invokes: “to everything there is a season.” The storied folk rock
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Inside the Mind of Alzheimer's
The Old Testament book of Ecclesiastes, Chapter Three, invokes: “to everything there is a season.” The storied folk rock
The Huffington Post: The Courage of Bob
There was a time when Brooklyn was the world. Flatbush, Prospect Park, Greenpoint, Gowanus, Bay Ridge, Bensonhurst, Cyprus
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I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts
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Mother’s Day has a way of bringing us back to the womb, providing prospective beyond a Hallmark card or bouquet of flowers–flashes of reflection, a carousel of streaming images on an old-school slide projector embedded in the mind. The images keep flashing beyond the day. Memories abound.
My mother, the hero of my life, was no more perfect than anyone else’s mother; in many ways, she was a composite of her generation. Virginia Brown O’Brien brimmed in gifts and with love, but never was a great cook. A second-generation Irish American with close ties to County Wexford, she boiled everything gray. To kill the taste, we used salt at home, pounds of it, as seasoning, and Ketchup, poured liberally for supplemental flavoring. In the cluttered kitchen of our family home in Rye, New York–not far from the Upper East Side of Manhattan where my mother grew up–the pot roast simmered on Sundays from morning Mass until early evening. The hoary smell that wafted through the three-story stucco home still makes me nauseous today; I’m sure the scent still wafts from the walls. You had to cut the pot roast with a chain saw.
My mother–a stunning woman barely five feet, three inches and 105 pounds –gave birth to 10 children and had five miscarriages, an accomplishment in itself. She used to call me a “lazy chewer,” but meat on the table was always rawhide-tough, laced with fat. With all those mouths to feed, mom knew how to stretch a dollar like it was Gumby. Yet at times, she seemed troubled.
As a teenager, I noticed her often standing at the kitchen window overlooking a corn patch with Rye Brook in the distance, meandering out to Long Island Sound. She was talking to herself, fully engaged in conversation. I wasn’t sure with whom. At first, I thought it was a way of deflecting the stress of raising a brood of kids with a collective attention span of a young, yellow Lab. The disengaging increased: misplacing objects, loss of memory, poor judgment, seeing things that weren’t there, and yes, the rage, warning signs years later that I began noticing in myself.
After my father, a small man with the heady name of Francis Xavier O’Brien, had retired as director of pensions for Pan Am, and my mom left her teaching job, my parents sold the house in Rye and moved to Cape Cod, settling into our Eastham summer home, not far from Coast Guard Beach on the Cape Cod National Seashore. I felt privileged to be the only sibling living on Cape, but with favor comes responsibility. Over time, my dad developed prostate cancer and severe circulation disorders requiring several life threatening operations, rendering him to a wheel chair. My mother progressively continued her cognitive decline into Alzheimer’s, but fought off the symptoms like a champion to care for my father, once a swashbuckling World War II Navy man, among the Greatest Generation, the independent conquerors of world evil, who now clung to their spouses in old age. But what about the Greatest Generation of women who collectively served in inspiring ways? Where are their accolades, their medals, the headlines, the respect? To add insult, two thirds of those stricken now with Alzheimer’s are women.
“I can’t get sick,” my mother kept saying when all the siblings urged her to see a doctor. “I can’t get sick,” as if by saying, the words made her whole.
Yet, she was sick, and she knew it.
The forewarning signs were textbook Over time, she began sticking knives into sockets; hiding money, wads of it; brushing her teeth with liquid soap; refusing to shower; not recognizing people she had known all her life; serving my father coffee grinds for dinner.
The behavior upset my siblings, and me, and equally distressed my father, who observed it nightly. At first we collectively passed it off as a change-of-life transition. We were in denial, but the shift intensified.
Yet unremittingly, she cared for my dad, always refusing to succumb to disability. She encouraged me in my own progression of Alzheimer’s; she taught me how to fight, how to live with dementia, how never to give into it. She became my role model in the resolute life she lived.
Then one late Sunday afternoon in 2006, the disease began to overtake. I brought my mother a photo of all her children from a recent family reception, and she couldn’t name one of them, including me. She had no clue, and was still driving at the time. As I left my parent’s home that night, I could only think of the jarring interjection in the movie Jaws when Chief Brody first encountered the mammoth shark: “YOU’RE GONNA NEED A BIGGER BOAT!”
All we had was a dinghy. Mom was done, at the tipping point, asking me at one point, “Greg, would you take over?” She was ready to pass the baton in this race against Alzheimer’s, a baton handed her from her father, who had died of the disease.
The efficacious passing the baton in a relay race is as fundamental as lacing up a pair of running shoes, and has relevance in the fight against Alzheimer’s. Timing is critical. When a runner hits a mark on the track, usually a small triangle, the awaiting runner–on cue and face forward–opens a backward hand, and after a few strides, the lead runner has caught up and exchanges the baton. Often the lead runner will shout “stick!” several times as a signal for the awaiting runner, glancing behind, to put out a hand.
Looking back, I realize now that my mother in her race against this disease was yelling at me, “Stick…stick…stick!”
The baton was passed on a seminal summer day on a bicycle ride from Brewster to Eastham, along the bucolic Cape Cod Rail Trail. I had taken my young son, Conor, and his friend on a 15-mile trek to visit my mother –a pastoral passage beside sparkling cranberry bogs, lush meadows, saltwater marshes, and fresh water ponds. In all ways, it was a cleansing, majestic day. Mom, however, was more muddled than usual. With the temperature inching toward 80, she scolded all of us for not wearing winter coats. To take the “chill” off, she insisted the boys don heavy, oversized sweatshirts from a spare bedroom closet, largesse from winters past. They balked at first, but sensing her resolve, I instructed them to oblige. Mom’s thermostat was shot.
Conor, having witnessed corresponding episodes in the past, concurred, and his friend, Ryan, graciously consented. The second we peddled out of the driveway, turning left on Cestaro Way toward the bike trail, the boys ripped off the sweatshirts and tossed them at me.
I draped them across the handlebars of my bike as we headed back to Brewster, taking in a panorama of primal nature. I was euphoric, in the Zen, incredibly at peace, myself in the early stage of this disease. Alzheimer’s will take you back to childhood. I felt like a kid again, and plied the trail in full speed far ahead of Conor, faster, faster!
The wind was soothing. In the moment, I recalled as a youth I had prided myself on riding a red, three-speed Schwinn racer, no handed! And like a child, I wasn’t wearing a helmet that day. For 30 seconds I peddled back in time, a kaleidoscope of images from youth: Rye Beach on Long Island Sound, the ball field at Disbrow Park, town marina, and out to the American Yacht Club where one could drink in the Manhattan skyline and the Twin Towers in the distance. Then, as abrupt as a clap of thunder, the imagery shifted. I sensed something awry.
In horrifying slow motion, what seemed like frame-by-frame, I witnessed the sweatshirts on the handlebars slip slowly into the spokes. My bike, at full gallop, stopped on a dime, and I was hurled head first over the handlebars about 15 feet into the air, but with the presence of mind at least to shield my left hand over my forehead before impact. I hit the tarmac with the force, it seemed, of a .45 caliber bullet, the impact cutting deep into my knuckles right through to the bone.
On the second bounce, my face hit the pavement in a pool of blood. I was numb, out of body, yet felt something cold pouring down my face. As I finally stood up, I must have looked like the lead role in a Bella Lugosi movie; in pure fright, Conor and Ryan sprinted for help. Two Samaritans sitting on a nearby back deck came to my aid, and collected the kids. The rest is fleeting; a half hour later I was rushed to Cape Cod Hospital in an ambulance, sirens ablaze. After multiple stitches to the head and left hand, I was discharged.
Little did I know that I had unleashed a monster.
Three years later, I was formally diagnosed with Early Onset Alzheimer’s; doctors said the head injury had unmasked the disease in the making. The telltale symptoms had begun years earlier. My genetic loading for Alzheimer’s, the doctors said, was striking–first my maternal grandfather, my mother, then later my paternal uncle and my father. Brain scans and clinical tests confirmed my diagnosis. I also carry the Alzheimer’s marker gene APOE-4.
My father died first, followed four months later by my mother, who had declared upon his death, “I’m not sure how much longer I want to hang around here.” I was there when she died, and promised her that I would fight this disease and try to teach others how to live with Alzheimer’s, as she had.
Mom today is still with me in spirit, that realm between the present and the past, between life and death, looking into infinity. Ever look between two facing mirrors? You face a seemingly endless line of images fading into the distance. In principle, it’s called “looking into infinity.” Each mirror reflects the image into the other mirror, bouncing these reflections back and forth into infinity–gateways, some speculate, to parallel universes.
My mother was a mirror, preparing me as only a mother could, to see through her lens into infinity and pass the baton.
Many months ago, one evening when I couldn’t sleep, typical of my journey, I was lying late at night on the couch in the family room, watching reruns of “Planet Earth.” I sensed a woman sitting next to me. I wasn’t sure if I had drifted off, was in-between sleep, or was just dreaming. I’m still not sure. At first, I thought it was my wife, Mary Catherine; her back was to me. Then the woman turned and looked at me. It was my mother. She stared straight at me.
“Mom,” I said. “I can’t sleep!”
“It’s ok. I can’t sleep either,” she replied in a calming tone.
From what I recall, she then rubbed the back of my head, and within seconds, I fell back into a deep slumber. It was the most restful, peaceful sleep of a lifetime.
These types of encounters are difficult to discuss; one opens themselves up to all sorts of analysis, second-guessing. I get that.
Yet, on a cold January night a year later, I had fallen asleep on the couch again. I got up, as I do every two hours, just to walk around the house, somewhat in disarray. On the way back to the couch, I checked the digital clock on the stove. It was 4:12 am, still dark, black as night. As I walked to the couch, I noticed something moving slowly to port side of the wood stove where embers were alight. It was an image of sorts, but instinctively I was serene with it.
At first, I thought it was just another visual misperception, another hallucination. I was wide awake at the time, focusing intensely on the image. I saw the outline of a woman. She had blonde hair, dressed in clothing familiar to me. The image moved slowly toward me, then backward, then toward me again. The woman was beckoning me with her right hand to follow. She kept summoning. I realized then it was my mother, or a likeness of her. I was at peace in the moment, but it wasn’t my time to move forward. So, I turned on a light. Saw nothing. I turned it off. Saw nothing. Then I went back to bed in great calm, intuitively feeling that I wasn’t alone. I told my wife about the experience the following day. I want to believe it was my mother, but what if it wasn’t? What terrifies me is yet another manifestation of Alzheimer’s.
Still, my mother had my back again a few months ago in an encounter on stage in Beverly Hills where the Golden Globe Awards are presented. I had been asked to speak before 1,000 Hollywood celebrities at an Alzheimer’s fundraiser and Hollywood revue, called ” ANight At Sardi’s.” It was the final performance of this annual event. The stars were out that night in clusters.
The evening was hosted by David Hyde Pierce from the award-winning TV show, “Frazier,” and featured performances by the cast of “The Big Bang Theory,” Joey McIntyre, Jason Alexander, and Grace Potter. Seth Rogen and other A-listers presented as well.
Backstage before my speech, I was incredibly nervous. Few get to stand in this place. I told myself to calm down, that I’m doing this for my Mom, for all she had taught me.
I then heard a soft, confident voice inside that said, “You rock! Greg, you just rock this!”
And so I did.
At the podium, I noticed a woman standing behind me to the right. I felt she was there for encouragement and support. I had a good, calming feeling about it. Several times I wanted to turn around to see who it was, but felt inside: “Just stay focused, stay focused!”
After my speech, I turned around, and the woman was gone.
Later, I asked my wife, “Who was the woman standing next to me?”
My wife paused, “Greg,” she said. “There was no woman, no one was on the stage.”
“No,” I said, “the woman behind me to the right. Who was she? There was a woman standing behind me…She told me to rock it!”
“Greg,” my wife replied, “there was no woman…”
The spirit of mother, I believe, was on the stage with me, and perhaps the souls of others consumed by this demon called Alzheimer’s. They must have had a kick-ass after party. Wish I could have been there.
My mom was always one for emphasis with me; she never thought I got it.
So two days later, at Los Angeles Airport, at a restaurant awaiting a flight back to Boston, my wife gasped as she looked up at a television commercial on the screen above us. The caption read, “For those who rock…”
Then last Sunday, I was asked to speak at an Alzheimer’s walk along Cape Cod Canal before hundreds of participants. I followed my mother’s script about walking in faith, hope, courage and humor. As my wife and I passed the starting line, there was a woman to the right holding a sign and waving it at me. I didn’t know her, but took a photo on my iPhone. The sign read, “You Rock!”
The tears welled up.
Do you believe in angels?
Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and is an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” is running a series about O’Brien’s journey, online at npr.org/series/389781574/inside-alzheimers, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary on April 6. For more information go to: OnPluto.org. O’Brien serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is a patient advocate for the Cure Alzheimer’s Fund of Boston and the distinguished Washington, DC based UsAgainstAlzheimer’s.
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