O’Brien, who has been diagnosed with Early Onset Alzheimer’s, is the author of the award-winning book On-Pluto: Inside the Mind of Alzheimer’s.
There are great parallels between William Henley’s Victorian poem “Invictus” and consummate coach Pat Summitt, who succumbed to Alzheimer’s after a battle beyond the clash of even the greatest basketball games. Wrote Henley in his seminal 1888 poem about the throes of unthinkable struggle, “I am the master of my fate; I am the captain of my soul.”
Summitt indeed was captain of her soul, with a legacy that far exceeds her record 1,098 wins and eight national championships as coach of the Lady Volunteers at University of Tennessee. Always the mentor and teacher, even when her memory and mind failed her, she led quietly.
“There’s not going to be any pity party, and I’ll make sure of that,” she told the Knoxville News Sentinel in 2011 after announcing her Early Onset Alzheimer’s diagnosis. “Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days.”
Though cut from my freshman high school basketball team, I know something of Summitt’s struggle. I was diagnosed with Early Onset Alzheimer’s in 2009 after experiencing the horrific symptoms of short-term memory loss, inability to recognize individuals and places I’ve known all my life, difficulty completing simple tasks, terrible judgment, confusion with time and place, intense withdrawal and challenges with problem-solving and spatial relationships. The diagnosis came two weeks after I was diagnosed with prostate cancer, which in consult with my doctors and family, I am not treating. It is my exit strategy.
You can’t remove a brain.
I carry the marker gene for Alzheimer’s. It runs on both sides of my family. My maternal grandfather and my mother died of Alzheimer’s in bruising prizefights like Summitt’s; my paternal uncle died of Alzheimer’s about two years ago; and before my father’s death, he was diagnosed with dementia.
A death in slow motion, Alzheimer’s can take twenty to twenty-five years to run its serpentine course. It’s like having a sliver of your brain shaved away every day. Some with the disease are taken earlier. Like a snowflake, no two patterns are identical, which confounds researchers in finding a cure.
So those with the disease march on, like Pat, feeling intensely alone. Beyond the shadows of others, they quietly fend off the debilitating symptoms, the loss of self-esteem, the taboo of losing what is most precious to us.
The stereotype of Alzheimer’s is not factual—an end stage for 85-year-olds in a nursing home. As the great Bugs Bunny once observed (adopting a line from the writer Elbert Hubbard), “Like the man said: don’t take life too seriously. No one gets out of it alive.” Until we understand collectively that Alzheimer’s strikes people in the prime of life—individuals at first glance who seem just like you—there will be no critical mass to demand a cure for this disease that is poised to annihilate the Baby Boomer generation and generations to come. It’s been said that in 25 years there will be two kinds of people—those with Alzheimer’s and those caring for someone with Alzheimer’s. Pat Summitt did not want, nor do I want, your pity. Please understand this could be your story some day.
I’ll never forget sitting in the neurologist office outside Boston, side-by-side with my wife Mary Catherine, listening to the diagnosis. I felt as though I was slipping into Louis Carroll’s Alice in Wonderland, where “nothing would be what it is, because everything would be what it isn’t.”
What “would be” was devastating. I felt the tears running down the sides of my face. My eyes didn’t blink. I reached for my wife’s hand and asked: “What about the kids?” I felt so isolated. Yet, I was overcome with sadness for my wife. This wasn’t fair to her. And I couldn’t fix it.
Dammit, I couldn’t fix it!
I focus every day on living with Alzheimer’s. The death part—thank you, Bugs—comes later. What was once familiar is now fleeting. Today, I have little short-term memory, a progression of blanks, analogous to someone shutting off a light in my brain. Close to 60 percent of what I take in can now be gone in 30 seconds. It is dispiriting to lose a thought in a second. There are 86,400 seconds a day—to stand exposed, and yet stand one’s ground, to begin to grasp in fundamental, naked terms who one really is, the good, the bad, and the ugly.
The ugly is unnerving. I often fly into inexorable rage and hurl the phone across the room, a perfect strike to the sink, when I can’t remember how to dial. I smash the lawn sprinkler against an oak tree in the backyard because I don’t recall how it works. My skin melts in a second-degree burn when I push open with a bare hand the flaming-hot glass door to the family room wood stove to stoke the fire. And I cry privately, the tears of a little boy, because I fear I’m alone, nobody cares, and the innings are starting to fade.
And then there are the terrifying days of hallucinations and delusions, caused by changes in the brain, common in Alzheimer’s and dementia patients—false impressions of objects, events and sensory perceptions like smell, taste or imagined voices. The hallucinations are the most troubling, as they were for my mother: those spider-like creatures that crawl regularly, some in sprays of blood, along the ceiling at different times of 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 for now they are not real, yet still fearful of their representation of my cognitive decline. On a recent morning, I hallucinated 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.
In Alzheimer’s, I’ve learned, the brain’s ability to process shrinks. Literally. As the brain shrinks, it instinctively makes decisions on what functions to power and what functions to power down to preserve fuel. Years ago, I thought I was Clark Kent, an award-winning investigative reporter. I even wore at times in amusement a trademark blue T-shirt with the iconic Superman shield under my Brooks Brothers dress shirt. But these days, I feel more like a baffled Jimmy Olsen, the fictional fledgling photojournalist from the Daily Planet. Or on days of muddle, more like Mr. Magoo, the wispy cartoon character created in 1949 who couldn’t see straight, exacerbated by his stubbornness to acknowledge a problem. Or like Mr. Potato Head, with the wacky pushpins and all. Or like a codfish landed on a steamy Cape Cod dock. A fish rots from the head down.
Perhaps Ernest Hemingway said it best when he observed, “The world breaks everyone, and afterward, some are strong at the broken places.”
Pat Summitt, unbowed, was strong in the broken places. She fought with gut instincts in faith, hope and humor.
In death, as in life, she will always be our coach.