Lisa Genova’s poignant word picture of Alice Howland still haunts me after five years: “Her heart began to race. She started sweating. She told herself that an accelerated heart rate and perspiration were part of an orchestrated and appropriate response to running. But as she stood on the sidewalk, it felt like panic.”
Alice was lost. The fictional 50-year-old Harvard psychology professor in Genova’s groundbreaking novel Still Alice stood frozen in Harvard Square; she didn’t know where she was. The demons were howling. “Please stop this,” Alice cried within. Then, “just as suddenly as it came on, the landscape snapped snugly back into place.”
I know the panic, the heart-stopping fears. I am Alice without the dress. The parallels are striking.
Five years ago at age 59, I was diagnosed with early onset Alzheimer’s after a serious head injury doctors say unmasked a disease in the making. Years earlier, I had a front row seat as Alzheimer’s devoured my maternal grandfather and my mother. Now it’s calling for me.
“Please stop this,” I plead daily to God. “Stop this!”
Like Alice, I, too, am often lost — for example, on a the night two years ago, driving home to Cape Cod from Boston, a route I know well, and as memorable to me as a Gronkowski down-and-out pattern at Gillette Stadium, I was lost in the haze of Alzheimer’s, not realizing who and where I was until 2 a.m. just outside Providence, heading to Connecticut. Then, there was a time last summer when I drove my lawn tractor through the woods near my home in an out-of-body experience, thinking I was supposed to cut someone’s lawn, instead, grinding stumps in the brush until the blades fell off. Three years ago, I allowed myself to bleed out eight pints of blood after a cancer prostate biopsy went horribly wrong, and I didn’t tell anyone because I thought exsanguination might be my exit strategy from the horrors of Alzheimer’s.
Four weeks ago, about a mile from my house, on a serpentine country road, I veered sharply to the right in my Jeep, perhaps too sharply, to avoid what appeared to me to be a deer. I crashed through a stone wall. The jeep was airborne, then rolled twice, decapitating the roof, as my head hit against the windshield. A gash (yet another concussive head trauma) had to be closed with surgical staples after an ambulance ride to the emergency room. Observers say I shouldn’t have survived the rollover that — improbable as it may sound — took place in the parking lot of the church where my mother’s funeral was held. The irony is not lost of me.
God, it seems, has me on a pitch count.
The litany goes on.
And so it is in the early stages of Alzheimer’s — moments of shattering terror, as Alice witnessed, when one is incalculably disoriented in familiar places, not recognizing family and close friends; or when I hurl a phone across the room, a perfect strike to the sink, because in that moment I can’t remember how to dial; or when I smash the lawn sprinkler against an oak tree in the backyard because I can’t recall how it works; or I feel the dread of hallucinations, those spider-like creatures that crawl regularly, some in sprays of blood, along the ceiling at different times of the day, sometimes in a platoon, turning at 90-degree angles, then floating toward me; or when I push open the flaming hot glass door to the wood stove barehanded to stoke the fire just because I thought it was a good idea, until the skin melts in a third-degree burn; or simply when I cry privately, the tears of a little boy, because I fear that I’m alone, nobody cares, and the innings are starting to fade.
“She (Alice) simply couldn’t find the word,” writes Genova. “She had a loose sense for what she wanted to say, but the word itself eluded her. She didn’t know the first letter or what the word sounded like, or how many syllables it had.”
Today at times, I can’t find the word, calling it “the thing, the thing, dammit, the thing,” and that sucks when you rely on words for a living. 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, to begin to grasp in fundamental, naked terms, who one really is — the good, the bad, and the ugly.
Daily, I attempt to deflect a flood of disconnected synapses as I discern a flickering picture, as if maneuvering rabbit ears on a vintage black-and-white TV, trying to get the focus just right. So, why can’t I get a clear picture?
The human, a fragile organ that inaugurates connectivity the first week in utero, contains 100 billion neurons — 16 billion times the number of people on Earth–with each neuron igniting more than 10,000 synaptic connections to other neurons, totaling more than a trillion connections that store memories. If your brain functioned like a digital video recorder, it could hold more than 3 million hours of TV shows, enough video storage for 300 years. Not bad for a mass the size of an average head of cabbage, with the encoding, storage, and retrieval capacity to determine, on a good day, how many angels can dance on the head of a pin.
Yes, in Alzheimer’s the panic is real, the picture out of focus — often snowy brain reception like a spitting blizzard in Stephen King’s thriller, The Shining. One can’t see the future.
Lisa Genova gets it right in Still Alice, so does Julianne Moore in her Oscar-nominated film performance, and of course, so does gifted Executive Producer Maria Shriver, who lost her distinguished father Sargent Shriver to Alzheimer’s. Such celebrity awareness will surely help open doors for a more candid discussion of this monster of a disease, though the conversation needs to continue far beyond movie reviews and well-deserved accolades to move the world off its collective abnegation. The Alzheimer’s crisis is not looming. It’s here.
As Mark Twain once said, “Denial ain’t just a river in Egypt.”
And so, we need to push back with a battering ram against the stereotype that Alzheimer’s is merely the horrid, inevitable final stage. While the end stage is devastating, the beginning and middle stages become a lonely, painful journey, the long kiss goodbye, which often begins 15 to 20 years before diagnosis, with vile symptoms akin to having a sliver of your brain shaved every day. It robs one of self. It infantilizes. Alzheimer’s is not your grandfather’s disease. It could be your story some day.
We need to put a face on Alzheimer’s, make it “popular” as such, a cause worth the street fight — a disease for which we do not know the cause, and for which there is no cure, a disease that is part of an umbrella called Dementia, onomatopoeia for demons screeching in the desert.
No wonder few want to talk about it.
We need to give those afflicted with Alzheimer’s a voice and an awareness that their lives have purpose beyond a diagnosis. To fight an enemy, one must study the enemy, and have working strategies in place. As the great ancient Chinese General Sun Tzu, assumed author of The Art of War, once counseled, “Tactics without strategy is the noise before defeat.”
There is plenty of noise on the Alzheimer’s front today, much defeat, and hardly enough funding for a cure. Not even close.
Speaking recently, humbly on behalf of the 5 million-plus individuals in the United States with Alzheimer’s, many of whom cannot speak for themselves, I shared my journey, and offered a voice in a speech before more than 400 graduate students and doctors at the Massachusetts General Hospital (MGH) Institute of Health Professions in Boston. It was intimidating at first, given that my only medical training was cutting up a frog in high school. Along with members of my family and my clinical team, I spoke from the heart about the need for preemptive strategies, and the faith, humor and hope to live with Alzheimer’s while we can. The dying part comes later.
Oh I will dance with Cinderella
I don’t want to miss one song
‘Cause all too soon the clock will strike midnight
And she’ll be gone
— Steven Curtis
Particularly emotional for me at MGH were the gut observations of my oldest son, Brendan, noting to doctors and students that he relished the moment last summer, watching in almost slow motion, as I danced with my beautiful daughter Colleen at her wedding. Brendan paused, a moment frozen in the room. He teared up, then said, “I’m not sure my father will be here for my wedding, if this darkness prevails.”
I had a lump in my throat the size of a snow cone.
Darkness was on the horizon five years ago, as I sat with my neurologist, listening to my diagnosis after failed cognitive tests, a brain scan, MRI, and a gene test showed I carry the Alzheimer’s marker APOE4. “The test results here show they are real,” the report said. “The findings here reveal short-term memory function within the first-stage dementia range.”
I felt as though I was slipping into Lewis Carroll’s Alice in Wonderland where “nothing would be what it is, because everything would be what it isn’t.”
“The brain SPECT scan is most compelling in clinical context for Alzheimer’s,” the report said. “The diagnosis has been made…I am not sure how much longer he has in terms of being able to reliably and meaningfully provide the quality of work he has put out in the past… I suspect he is exhibiting the phenomenon of ‘cognitive reserve’ in which case he may tolerate on a functional basis impairments further into the baseline underlying pathophysiology of the disease longer than one who does not have the same. The general point is there needs to be balance between a healthy desire to overcome obstacles, and yet acknowledge fundamental reality.”
Alzheimer’s is a death sentence. The doctor’s words resonated. I felt the tears running down the side of my face. My eyes didn’t blink.
After advising me to appoint a health proxy and consult with an estate attorney, my neurologist urged me to read Still Alice. He said, “It will give you a roadmap of what’s to come,” adding that the road ahead is serpentine.
For months, I put it off; I didn’t want to know Alice Howland. I didn’t want anything to do with Still Alice. Then on the advice of close friends, I read the book, and was compelled from the start, highlighting throughout Genova’s edifying passages where I was experiencing the same. That copy of Still Alice still sits on my desk to the right of my laptop, a reminder I’m not alone. Alice is nearby. I wish I could speak with her. Several years ago, I reached out to Genova, who lives on Cape Cod two country towns away. We’ve become friends, and she wrote the foreword to my book, On Pluto: Inside the Mind of Alzheimer’s, my personal journey as an investigative reporter embedded in the disease and chronicling my own progression.
Now, I have to buck up to watch the movie. Though Alice Howland is fictional, those demons up on the big screen are real to me.
I’m still Greg, and I have Alzheimer’s.
Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” was recently published. 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: Still Alice, Still Greg, Still Enduring