by Greg O'Brien
© Codfish Press, Brewster, Ma.
ISBN 978-0-09913401-1-8 ebook
Book design/page layout, Joe Gallante, Coysbrook Studio, Harwich, Ma.
Cover design: Brandy Polay
In Praise of On Pluto: Inside the Mind of Alzheimer’s
“Told with extraordinary vulnerability, grace, humor, and profound insight, On Pluto is an intimate look inside the mind of Greg O’Brien, a journalist diagnosed with early- onset Alzheimer’s. But the real gem of On Pluto lies in its unflinching look inside Greg’s heart. If you’re trying to understand what it feels like to live with Alzheimer’s, and you are because you’re reading these words, then you need to read this book.” —Lisa Genova, New York Times best selling author of Still Alice
“In On Pluto, Greg O’Brien has given us a priceless gift: an honest, funny, heartbreaking, and powerfully poignant look into the world of an Alzheimer’s sufferer by a man who lives with it. Greg O’Brien is a brilliant observer and superb writer, and he is at the top of his game in this book. It’s as if he has willingly dropped himself into a kind of mental tornado, so that he can tell us what he sees from inside. You have never read a book quite like it, and probably never will again.” —William Martin, New York Times best selling author of Cape Cod, Back Bay, and The Lincoln Letter
“Greg O’Brien writes with the consummate knowledge of a guide and the courage of a pioneer. In this important and transcendent book, he serves both roles as he folds back the veils of fear and traverses the treacherous territory of early-onset Alzheimer’s. On Pluto: Inside the Mind of Alzheimer’s glows with honesty, intelligence, and compassion, and, given the subject, is a surprisingly spirit-renewing book.” —Anne D. LeClaire, author of best selling Listening Below The Noise, Leaving Eden, and The Lavender Hour
“Most sufferers of early-onset Alzheimer’s do their very best to hide it from everyone, sometimes even themselves. Greg O’Brien has chosen to look the beast in the eyes, and give us a candid, unflinching portrait of his family’s tragic history of the disease, as well as his own determination to not go down without a fight.” —Steve James, producer of the short film “A Place Called Pluto” and considered among the most acclaimed documentary producers with noted works: Hoop Dreams, Life Itself, Stevie, The New Americans, The War Tapes, At the Death House Door, and The Interrupters
“Alzheimer’s messed with the wrong man. If there’s anyone who can stand up to this awful disease with the right blend of eloquence, anger, and honesty, it is the defiant and profound Greg O’Brien. This book is a beacon of hope for anyone who can read or listen.” —David Shenk, author of The Forgetting, a New York Times best seller, and creator of Living With Alzheimer’s film project
“Greg O’Brien’s daily movements now include, he tells us, periodic trips to Pluto, a dark and distant planet off the grid of enduring memory. But Greg’s story of his life has mapped for us an inner space that is as light and present as Pluto is bleak and lonely. The courage of this book lies in the way that Greg speaks his peace into the dark. The hope of this book lies in the way that the dark, in the least expected of moments, seems to be listening to Greg, in inextinguishable love.” —Michael Verde, founder, Memory Bridge, The Foundation for Alzheimer’s and Cultural Memory
“Greg O’Brien takes us on a personal journey into Alzheimer’s disease and marks the trail for others traveling this treacherous path. At once fighting and accepting his fate, he eloquently describes the delicate balance between living and dying with this mind-robbing disease. As his mind fails and his wisdom grows, he is teaching us to defy the popular notion that memory is everything.” —Daniel Kuhn, MSW, author of Alzheimer’s Early Stages: First Steps for Family, Friends, and Caregivers
“Never before have we been offered such a clear understanding of how Alzheimer’s disease affects day-to-day perceptions. Greg O’Brien’s first-hand account of his own disease process will force us all to rethink the way we deliver care, and is a must addition to the libraries of all professional and family caregivers.” —Suzanne Faith, RN psych, Clinical Director, Hope Dementia & Alzheimer’s Services
“As a clinician working daily with families and individuals dealing with Alzheimer’s and dementia, the question we most often grapple with is how does one live well with the disease? Greg O’Brien’s book, On Pluto: Inside the Mind of Alzheimer’s, offers an answer rich in wit, courage, and a precision of detail that makes the book not only informative, but an extremely satisfying read. For the 5.4 million American families currently dealing with dementia, and for those of us who serve them, On Pluto is a critical and groundbreaking book. We are fortunate to have Greg’s voice and spirit among us; he is a true American hero.” —Dr. Molly Perdue, PhD, Director of Family Services, Hope Health of Cape Cod
“Greg O’Brien’s personal battle against Alzheimer’s is an everyman’s fight; he is the quintessence of the lead character in the epic Alzheimer’s novel, Still Alice. O’Brien, through faith, humor, and journalistic grit, is able, like a master artist, to paint a gripping, naked word picture of this progressive, chronic disease for which there is no cure—a sickness that will swamp a generation. O’Brien bluntly offers Baby Boomers and generations to come a riveting guide of how to live with Alzheimer’s, rather than dying with it.” —Alisa M. Galazzi, co-founder of Dementia Care Academy, former Executive Director, Alzheimer’s Services of Cape & Islands
CONTENTS
Foreword
Preface
Acknowledgments
1. A Place Of Recall
2. Mr. Potato Head
3. Hell No!
4. Heading Out to Pluto
5. “Denial Ain’t a River in Egypt”
6. The Wayback Machine
7. Smart Pills
8. Rocks in My Head
9. American Pie
10. Forget-Me-Nots
11. Dead-End Street
12. Passing the Baton
13. Angels Unawares
14. Groundhog Day
15. Out to the Kuiper Belt
Epilogue
Resources
About the Author
DEDICATION
To my mother, Virginia Brown O’Brien, whose courageous battle with Alzheimer’s taught me how to stand firm in faith against a demon of a disease.
Romans 5:3-5—“We exalt in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint.”
Age of innocence, 1953:
Virginia Loretta Brown O’Brien,
Rye Beach, Westchester County, NY, with son, Greg.
FOREWORD:
LISA GENOVA
Every story has a beginning, middle, and end. I met Greg O’Brien somewhere in the middle. I received an email from him the end of March 2011. He introduced himself as a journalist, a fellow Cape Codder, someone who knows my husband and his documentary film work, and a fan of Still Alice.
It was an email aimed to woo and impress me, and just as I was thinking this, I read:
“Don’t be overly impressed by the articulation of this email. It took about two hours to write. Years ago, I would have written this in five minutes or less. But it was worth the time.”
Like his mother and maternal grandfather before him, Greg had been diagnosed with early-onset Alzheimer’s. He wanted to know if we could meet and talk. I get this kind of email a lot and do my best to offer an ear, encouragement, advice, and connections for further support. It’s typically a sincere but brief relationship, most often limited to a few email exchanges. I had no idea when I agreed to meet Greg that he’d be on my mind pretty much every day since, that he’d become a close friend and personal hero.
Since I’ve known Greg, he’s been fighting through the dri
fting fogs of dementia, determined to press on, drawing on everything he is—brilliant journalist, adoring and faithful family man, generous and lovable Irishman with a great sense of humor, masterful storyteller—to write On Pluto. Greg is the author of four Cape Cod-related books, and has won many prestigious awards for journalism over a 30-year career, but I believe this book is Greg’s greatest achievement and contribution, not to the cure for Alzheimer’s (at least not directly), but to our understanding of how to live and love in the presence of Alzheimer’s.
In his own words, “While I have the facility to do so, I want to communicate to others, to those who will face this demon some day and those who love them, that with the proper medical direction, life strategies, faith, and humor one can prevail in the moment and lead a productive life for as long as possible.”
Understanding the scientific pathology of Alzheimer’s is critically important for improving diagnostic imaging, developing more effective treatments, and someday, discovering a cure. Understanding the science—the accumulation of amyloid and tau, identifying genetic risk factors, elucidating NMDA receptor regulation—is necessary and will take time and money.
But equally important to furthering research for a future cure is an understanding of the human experience of Alzheimer’s now. What does it feel like to live with Alzheimer’s? This kind of knowledge is also necessary, but it requires a different kind of investment. It takes courage and empathy.
We’re all terrified of Alzheimer’s. The fortress of fear, shame, stigma, alienation, and isolation that surrounds Alzheimer’s today is not unlike what we saw with cancer 40 to 50 years ago. We didn’t even say the word “cancer.” Instead we called it “the big C” in hushed voices. But something changed. We began talking openly about cancer. We began wearing looped ribbons and walking to raise awareness and money, and as communities, we began rallying around our neighbors with cancer, offering dinners and carpools and support. We acknowledged the human experience of living with cancer. And now we have treatments for cancer. We have cancer survivors.
Right now, we have no Alzheimer’s survivors. We need to find the courage to talk about Alzheimer’s, to acknowledge not just the end of this disease, but also the beginning and the middle. We need to change the image of this disease, which tends to depict only an elderly person in end stage, “an empty shell,” someone dying from Alzheimer’s. Someone who is, perhaps, easier to ignore. This image excludes the millions of people LIVING with Alzheimer’s, people newly diagnosed in their 40s, 50s, 60s, and 70s; people living somewhere in the beginning and the middle. People like Greg O’Brien.
What does it feel like to live with Alzheimer’s? What does that image look like?
This is what Greg O’Brien so bravely, intimately, and beautifully shares with us. Recounting memories of his mother and grandfather, the day of his own diagnosis, symptoms of disorientation, stories of forgetting names and faces—even his wife, told with unflinching truth, grace, and humor, Greg shares with us what it feels like to live with Alzheimer’s in the hope that we will better understand it. Understanding is the path to empathy. Empathy is the key to human connection.
Greg and I met a couple of years ago to talk about Alzheimer’s. I expected to listen to this stranger, tell him what I knew, and help him out if I could. Then he’d be on his way, and I’d go back to my life without Greg O’Brien. Instead, I sat with a man so open and real, a man fighting to be present and live every single day to the fullest, with everything he’s still got, a man who could find humor in the ugliest and scariest of moments. I was captivated, enamored, inspired. Surprised.
Since that day, Greg’s Alzheimer’s continues to advance, but the man I met more than two years ago is still here. He’s tenacious, funny as hell, generous, incredibly smart, and brave. He’s still open and real. He loves his family, his friends, and Cape Cod with a huge heart. He’s a man I’m proud to call my friend.
Greg has told me many times that he believes his purpose is to share this story, that it might reach and improve the lives of millions of people traveling a similar journey.
I believe it will, Greg.
—Lisa Genova, PhD, New York Times best selling author of Still Alice, Left Neglected, and Still Anthony
PREFACE:
LIVING WITH ALZHEIMER’S
GREG O’BRIEN
“As I look back over a misspent youth, I find myself more and more convinced that I had more fun doing news reporting than any other enterprise. It really is the life of kings.”—H.L. Mencken
Ascribe is nothing without good notes. For years I’ve taken detailed notes as an embedded reporter inside the mind of Alzheimer’s, chronicling the progression of this monster disease. Ever since I knew that something was terribly wrong after a serious head injury had “unmasked” a disease in the making, my reporting instincts compelled me to document, to compile a blueprint of strategies, faith, and humor, a day-to-day focus on living with Alzheimer’s, not dying with it—a hope that all is not lost when it appears to be.
Death comes to all. While in the natural, we have little rule over time and place, we can choose the attitude as we head through the tunnel to a brighter light. As Leonardo DaVinci observed in the 15th century: “While I thought that I was learning how to live, I have been learning how to die.” Aren’t we all, if we lift the thin veil of denial?
So, we press on in the shadows of role models. One of the most inspiring to me is a man called “Sweetness.” He taught us legions on the gridiron about perseverance. The late Hall of Fame Chicago Bears legend, Walter Payton, nine times an All Pro, was one of the most prolific running backs in NFL history; he died too young at age 45 of cancer. Toward the end of his extraordinary career, a sports commentator declared on air in full reverence: “Walter Payton has run for more than nine miles!” To which his co-anchor replied intuitively, “Yes, and Payton did that getting knocked down every 4.6 yards, and getting back up again!”
If anyone has true grit in the fight against Alzheimer’s, it is Glen Campbell. Diagnosed with the disease in 2011, he refused to retreat, courageously relying on his muscle memory as one of the nation’s greatest songwriters and country and pop singers, teaching the rest of us along the way how to shine when the stage lights go dark. Campbell, while he could recall lyrics, launched his “Goodbye Tour” with three of his children joining him in his backup band. Sadly, in April 2014, it was reported that Campbell, at 78 still a man for all seasons in his inner soul, had become a patient at a long-term care facility.
Campbell was a lamppost to me earlier in life. I was drawn to his music on cross-country trips from New York to the University of Arizona where I attended school; his sweet, often raw and throaty voice, resonating from an eight-track tape cartridge, offered the verve to keep me focused and driving in my yellow Opel Kadett. His example today still keeps me focused and driving.
On these treks, I memorized almost every word of Campbell’s Greatest Hits, produced in 1971, never forgetting to play repeatedly: “Wichita Lineman” as I crossed Kansas; “By the Time I Get To Phoenix,” as I drove through the Petrified Forest in remote northeastern Arizona, often at 2 am with moonlight glistening off the semi-desert shrub steppes and colorful badlands; and “Gentle On My Mind” as I passed the graceful Santa Catalina Mountains, rising from the valley on the outskirts of Tucson. I can hear his voice now.
Award-winning filmmakers James Keach and Trevor Albert have eloquently captured the marvel of Campbell’s music, his love of family, and his battle with Alzheimer’s in a distinguished documentary, Glen Campbell…I’ll be me. For anyone seeking to understand the journey of Alzheimer’s and the endless solitary struggle of those afflicted “to be me,” this Keach/Albert documentary is required viewing; it is edifying to the point of boundless wisdom. Campbell is a “Rocky with a guitar,” Keach has said.
And then there’s Pat Summitt, the legendary retired coach of the Tennessee women’s basketball team, who told the Knoxville News Sentinel after announcing her diag
nosis of early-onset Alzheimer’s: “There’s not going to be any pity party, and I’ll make sure of that … Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days.”
And so it is with chronic illness, good days and bad days. You get knocked down, you get back up. Again and again. You find a way to win—as New England Patriots Coach Bill Belichick would insist—on the playing field, on the job, in the home, or in a fight against cancer, heart disease, AIDS, Parkinson’s, autism, depression, diabetes, dementia, or any number of vile illnesses. Lying down in football, as it is in wrestling, is a position of defeat. That’s not a good place for any of us. As a famed billboard on Boston’s Southeast Expressway proclaimed in the early ’70s about Boston Bruin premier center Phil Esposito: “Jesus Saves. But Esposito scores on the rebound!”
My place today is with the disease early-onset Alzheimer’s; it’s a death in slow motion. A freeze frame at times. Alzheimer’s and its predecessor, hardening of the arteries, stole my maternal grandfather, then my mother. And now it’s coming for me.
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, is at times, in a free fall. Doctors advise that I will likely write and communicate with declining articulation, until the lights dim, but other functions will continue to ebb. Daily exercise and writing are my succor, helping me reboot and reduce confusion. I try 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. Some days, I find myself between definitions—using every available memory device and strategy, cerebral and handheld, to communicate.