Anyone who doesn’t think they are going to die some day, please raise your right hand.
Death comes to all. In the natural we have little rule over time and place, but we can chose 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 of cancer at age 45. In his remarkable career, Payton ran for more than nine miles in total yardage. He achieved this milestone getting knocked down on average every 4.6 yards and getting back up again.
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 instills — on the playing field, on the job, in the home, or in a fight against cancer, heart disease, AIDS, ALS, 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. Not a good place for any of us.
My place today is with the disease early-onset Alzheimer’s. For years I’ve taken detailed notes as an embedded reporter inside the mind of Alzheimer’s, chronicling my own progression of this demon of a disease ever since I knew that something was terribly wrong. Doctors say a serious head injury “unmasked” Alzheimer’s in the making — a death in slow motion, freeze frame at times, like having a thin sliver of your brain shaved off every day.
Stephen King couldn’t have devised a better plot.
The statistics are numbing; it’s a story that might be yours one day, or the story of a close friend or loved one. Please don’t assume it won’t. There are an estimated 35 million people worldwide today diagnosed with Alzheimer’s or a related dementia, an estimated five million in the U.S. afflicted with Alzheimer’s, and predictions of up to 13.8 million Americans diagnosed with the disease by 2050. Alzheimer’s is the fifth leading cause of death in the U.S., and the only disease in the nation’s top ten that cannot be prevented, cured or slowed.
So, should you be frightened if you frequently forget where you put your keys? Maybe it’s nothing, perhaps a “senior moment,” or maybe it is the start of something. There is a clear distinction between forgetting where you parked your car and forgetting what your car looks like; forgetting where you put your glasses, and forgetting that you have glasses; getting lost on familiar roads because you’ve been daydreaming, and getting lost because your brain’s capacity to store information is greatly diminished.
Today, I have little short-term memory, a progression of blanks; close to 60 percent of what I take in now is gone in seconds. It is dispiriting to lose a thought in a second, 72,000 seconds a day in a 20-hour period of consciousness; to stand exposed, and yet stand one’s ground against Alzheimer’s.
The most disturbing symptoms are the visual misperceptions, the playful but sometimes disturbing hallucinations — seeing, hearing, smelling, tasting, and feeling things that aren’t there, as did my mother, who died several years ago of Alzheimer’s. For example, there was a time recently in Boston after a late business meeting when I retrieved my car on the third floor of a parking garage near Boston City Hall, only to find that a thick grated, metal wall had been pulled down to block my path. I feared I was locked in for the night. Walking toward the obstruction, the wall suddenly disappeared. It wasn’t real.
Then there are those crawling, spider, and insect-like creatures — some in sprays of blood, inching along the ceiling at different times of the day — sometimes in a platoon that turn at 90-degree angles then inch a third of the way down the wall before floating toward me. I brush them away, almost in amusement, knowing now they are not real, yet fearful of the further cognitive decline. On a recent morning, I saw a bird in my bedroom circling above me in ever-tighter orbits, then precipitously, the bird dove to my chest in a suicide mission. I screamed in horror. But there was no bird, no suicide mission, only my hallucination. And I was thankful for that.
The challenge in Alzheimer’s and public perception is that few want to embrace this taboo of a disease, or understand its devastating symptoms, at least not until a family member or close friend is stricken. Public awareness of Alzheimer’s — a balance between science, medicine, and faith — needs to change dramatically in anticipation of an Alzheimer’s epidemic for Baby Boomers and others in short years to come. In a snapshot, Alzheimer’s is not the stereotypical end stage; it is the journey from the diagnosis to the grave that one must try to fight on.
In an attempt to outrun Alzheimer’s, I try every day 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.
In the meantime, I see a lot of smart doctors and counselors with a range of connections to top hospitals and an assortment of coping mechanisms. But I crave the simple touch (an earnest smile, a hug, a touch of the hand) far more than a medical prescription or a clinical trial. A simple touch increases body awareness and alertness for those with Alzheimer’s, and reduces feelings of confusion and anxiety. My general practitioner, Dr. Barry Conant, who is also a good friend, has offered the best advice to date. He has urged me, on numerous occasions, to stop assaulting Alzheimer’s head on.
“You can’t win in a head butt,” he has said with great insight. “That doesn’t work.” “You just have to learn to dance with it!”
But, it’s an exhausting 24/7 dance marathon akin to the 1969 movie, They Shoot Horses, Don’t They? On days when I don’t feel like dancing, I look for escape; I look out to Pluto, a place of dense isolation where I can drift in separateness, a place of peaceful darkness where there is no need to fight any more. The sensation is freeing. Pluto in allegorical terms is a reference to my early days as an investigative reporter when I went deep “off-the-record” with sources. “We’re heading out to Pluto,” I would tell them, “where no one can see you or hear what is said.”
The survival metaphor still works for me, now more than ever, as the urge to drift out in Alzheimer’s overcomes at intervals. Pluto, previously known as the ninth planet, about 3.1 billion miles from Earth, is relegated now to “dwarf planet” status, a sixth the mass of the moon, and a third its volume, a “plutoid,” given it is one of the bodies within the Kuiper Belt, a dense cluster of rock and ice. It is a fine place to get lost metaphorically. Pluto’s orbit, like mine at times, is chaotic; its tiny size makes it sensitive to immeasurably small particles of the solar system, hard to predict factors that will gradually disrupt an orbit — the perfect place to have a conversation that “never existed” or a conversation one can’t recall. In the past, I often have taken close family, colleagues, and clients allegorically “out to Pluto” to discuss unmentionables about life, revelations, and comments that need to stay in a place without oxygen. Many have been there and back with me. I want them to be familiar with Pluto.
One day, like my mom, I won’t return from this dark, icy place, and I want my family and friends to know where I am.
Greg O’Brien’s latest book, On Pluto: Inside the Mind of Alzheimer’s, will be published this summer. He is also the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, he was diagnosed with Early Onset Alzheimer’s. His maternal grandfather and his mother died of the disease. O’Brien carries a marker gene for Alzheimer’s. For more information go to: OnPluto.org
The Huffington Post: A Place Called Pluto