Countless books and articles have been written by loved ones of those suffering from Alzheimer’s, giving us a glimpse of the devastating disease from the outside. But few exist from an insider’s perspective — from the mind of the sufferer.
Greg O’Brien’s new book, On Pluto: Inside the Mind of Alzheimer’s, gives a first-person account. At age 59, O’Brien was diagnosed with Alzheimer’s, the brain-wasting disease that affects one in nine older Americans, according to the Alzheimer’s Association.
A journalist for more than 35 years, O’Brien uses his reporting skills to investigate and document his triumphs and tribulations as he begins to experience hallucinations, confusion and forgetfulness. He takes notes as he struggles to hold strong to his slipping identity and independence. O’Brien is also the subject of the short film, A Place Called Pluto, which is online at livingwithalz.org.
The following excerpt from On Pluto (printed with permission from the publisher) chronicles how O’Brien feels on his “journey to Pluto,” a reference to his early days as a journalist when he would go “off-the-record” with sources. For O’Brien, Pluto used to mean a place where no one can hear what was said. Now it means the cold, dark and isolated place where Alzheimer’s takes him. The excerpt:
Rocks in My Head
Dr. Seuss once advised, “You’ve got brains in your head. You have feet in your shoes. You can steer yourself in any direction you choose.”
Not if you have rocks in your head.
Since I was a boy, my mother said I had rocks in my head; now after decades, they are literally calcifying, obstructing signals to the brain. Early-onset Alzheimer’s will do that.
I’ve always been a good rainmaker, the art of inducing precipitation, in this case, generating puddles for the family to pay bills, but of late, the signals are crossing. While I was never an exemplary steward, I’m spending money today in odd ways, at times like a drunken sailor. At doctors’ directive, I’ve turned all my credit cards over to my wife, who along with my faithful sister Lauren, an accountant-type, views all my online bank and debit-card statements daily to make sure nothing is awry. Surprises were occurring regularly, until I was forced to hand over a hidden American Express card I had kept to maintain a sense of self.
The final straw was Christmas 2011. I’m a Clark Griswold, “Sparky” dad; each Christmas Eve after church service, the family has an intimate dinner at the Chatham Bars Inn, overlooking Chatham’s inner harbor, then we ceremoniously watch Chevy Chase’s Christmas Vacation. We still laugh so hard we cry — aping all the iconic lines seconds before they are delivered.
I usually go overboard for Christmas, akin to Evil Knievel attempting to jump the Grand Canyon on a revved up motorcycle. This particular Christmas was no exception in holiday largesse, but early that Christmas Eve was a moment of unusual stillness for me, the cerebral kind. Listening to Silent Night on a speaker outsider a retail store at noon, I was flush suddenly with the fear that I had no gifts, that everyone else in the family had gone Christmas shopping but me. I began to panic. So, I whipped out the American Express Gold, and within 15 minutes bought close to a thousand dollars of stuff that I had no recollection of buying — the kind of crap nobody wants: shot glasses with Boston Celtic logos, paper plates and plastic forks, a doormat. I wrapped the “presents” like a good elf, placed them under the tree, and awaited Christmas morning.
To my horror, on Christmas morning, I realized that I had bought the motherlode weeks earlier, nice presents actually, and when it came time to open my inane offerings of late, I first got stares from my wife and kids, some humiliating laughs, a few loving cautions, and then a big hand from son Brendan — asking for the American Express card so that everything could be returned for a credit.
“Talk about pissing your money away. I hope you kids see what a silly waste of resources this was,” my wife must have thought in her best impersonation of Clark’s mother-in-law after he had placed 250 strands of lights with 100 bulbs on each strand for a total of 25,000 light bulbs on the house, and none of them worked.
“If I woke up tomorrow with my head sewn to the carpet, I wouldn’t be more surprised,” I thought.
Like the Griswold house, the lights in my head blink; they are full on, off, back on, then off again, on again. Sometimes, I can sense it coming; other times, I can’t — the disconnects, dropped calls, mental pocket dials, short-term memory losses and the tingling of the mind, which starts like an ocean swell in the forehead and works its way cresting in intensity over the top and sides of my head, then down the neck, rolling into my shoulders in anesthetizing sensation. I can feel the pressure. At first, I panicked; tried to stop it, but I couldn’t. So, I tried to learn to dance with it. But I suck at dancing. On a good day, the rhythm is smooth, though out of step in places. On a bad day, the beat is off — stumbling with two left cerebral feet over time, place and person.
But I now have a repertoire of banter always at the ready on sports, politics and religion for those who want to go deep. It’s a defense mechanism, while I try to find my bearings. I play a game with myself, upping the stakes every day — how long can I pull this off without someone noticing? There are times when the conversation drifts to a disparate subject with no grounding, and a friend or colleague will ask politely, “You with us?”
Conscious thought is survival; loss of reason is demise. In Alzheimer’s, one fights against the drifts, those vacant staring moments when the mind floats, and you can’t control it. And then there are the visual misperceptions — the polite phrase for hallucinations.
They started several years ago. One night watching ESPN Sports Center, after nothing stronger than coffee with milk, I noticed some insect-like creatures, with stringy, hairy legs crawling along the top of the ceiling toward me. It wasn’t the sports scores. I watched in horror as they inched closer. It was like the bar scene in Star Wars; they crept from wall to wall, then began to float toward me in packs. I remembered my mother telling me about them. So, I brushed them away. They vanished, though I was in a cold sweat. They kept returning at different times of day, about once every few weeks.
They still come. Sometimes in packs, sometimes alone, often appearing as a spider or some other distorted vision. Sometimes they come in an army, like the time I was in Phoenix two years ago at the house of my old friend, Ray Artigue, a communications analyst and former vice president with the Phoenix Suns. I was awake in a guest room at about 8 a.m., and a phalanx of the imagined approached me. I swiped at them; they disappeared.
The hallucinations don’t frighten me any more; Mom taught me that they will come, and they will go. An artist herself, she often counseled about fear: turn the tapestry over. Don’t look at the threads beneath it, just look at the art, and don’t be afraid to move on.
So I do, and keep evoking an anecdote of the great Protestant reformer Martin Luther, a man of incredible faith, who in the 1500s was frequently terrorized by his personal demons. One morning, as the anecdote goes, Luther awoke to Satan in full horror sitting at the bottom of his bed. Luther, at first, was terrified, then realized he had the faith to press on.
“Oh, it’s just you again,” he said to the apparition.
Then turned over and went back to sleep, like a rock.
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