On Pluto (6 page)

Symbolic of the race, I run three to four miles a day, some of them at a pace of five- to six-minute miles on a treadmill, not bad for a man in his seventh decade. The rage within drives me to outrun the disease, but the sprinting will not halt the advance of ongoing memory loss, poor judgment, loss of self and problem solving, confusion with time, place, and words, withdrawal, abrupt changes in mood, and yes, the flat out, earsplitting rage.

Words are the core of my life, and they are now lost on me at times. I often transpose words in what some medical professionals call an “attentional dyslexia.” Public restrooms can be a problem. I look for the word “men,” but at times, delete other letters around it, entering on occasion the “wo-men's” room, like a deer caught in headlights. The astonished look upon my face belies the innocence of my brain.

I think of my brain today, once a prized possession, as an iPhone: still a sophisticated device, but one that freezes up, shuts down without notice, drops calls, pocket dials with random or inappropriate conversation, and has a small battery that takes forever to charge. The inner anger is intense and manifests with Tourette's-like expletives and curses, involuntarily at times and in primordial fury over what is happening to me. I try to hide it from family and friends; often I can't. I've spoken to priests and ministers about the guilt of taking the Lord's name in vain; they tell me that God is resilient, everlastingly forgiving; that the Lord has wide shoulders. While we have free will, in God, there are no secrets.

Always persevere, legendary Brooklyn Dodgers pitcher Ralph Branca, a mentor and father figure, instructed me as a
youth. Branca, who tossed the fabled home run pitch to New York Giant Bobby Thomson at the Polo Grounds on October 3, 1951, once told me, “God doesn't give you more than you can handle.”

I never forgot that. Yet in a moment of doubt, I wonder. The fight against this disease consumes me, as with others, 7 days a week, 24 hours a day mostly, often intentionally outside the wheelhouse of observers, but more and more in an embarrassment of lapses when one side of the brain, the frontal lobe that directs executive functions, continually wants to shut down, while the occipital lobe, the rear most portion of the brain that controls creative intellect, declares:
Hell no!
The battle is numbing, like witnessing a head-on crash in slow motion when one can't remember how to find the brakes.

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, to begin to grasp in fundamental, naked terms, who one really is—the good, the bad, and the ugly. The ugly is haunting to me; the many things one would like to take back over the years, but cannot—feelings of failure and transgression.

I rely on copious notes and my trusty iPhone with endless email reminders. I am startled when my inbox tells me I have 40 new emails, then I realize that 35 of them are from me. The reminders help, though often I have no sense of time or place, and there are moments when I don't recognized people I've known most of my life—close friends, business acquaintances, and even my wife on two occasions. Sometimes, my mind plays games and paints other faces on people. Rather than panic, I just keep asking questions until I get some answers, or at least avoid yet another awkward episode. I work hard at deflecting the loss of judgment and filter. I find myself becoming more childlike,
curiously enjoying the moments of innocence and potty talk. It's a reversal of fortune. In college, I was a history major, an honor student, good at rote memory.
Fuggedaboutit
now, Mr. Potato Head!

The most disturbing symptoms in my private darkness are the visual misperceptions, the playful but sometimes disturbing hallucinations—seeing, hearing, smelling, tasting, and feeling things that aren't there, as my mother once did. There was a time in Boston, for example, 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 that crawl regularly, some in sprays of blood, 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 that they are not real, yet fearful of the 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.

To add to this mix, in what may be a brush with vascular dementia, I haven't had feeling in parts of my feet, hands, and lower-arm extremities for almost two years. Doctors are running tests. At least in the summer, out on my boat on Pleasant Bay, I don't feel the bites of greenheads—those nasty, stinging salt-marsh flies that draw blood.

Most diseases attack the body, but Alzheimer's attacks the mind, then the body. At 64, I am reasonably trim with a reflection of muscle memory, but doctors have told me that beneath
the surface, I might have the body of an 80-year-old—a view confirmed in a recent New England Baptist Hospital diagnosis of acute spinal stenosis, scoliosis, and a further degeneration of the spine. Expect more breakdowns, they say. Bring on those greenheads!

Every night now, I sleep in my clothes; it feels more secure that way, often in sneakers tied tightly at my ankles so I can feel pressure below. Feet, don't fail me now. As the brain shrinks, it instinctively makes decisions, experts say, on what functions to power and what functions to power down to preserve fuel—much like the diabolical Hal 9000, the heuristically programmed computer on the spaceship
Discovery One
bound for Jupiter in Stanley Kubrick's
2001 Space Odyssey
.

“I'm sorry, Greg, I'm afraid I can't do that,”
my Hal-like brain seems to be saying. Pardon the paraphrase, Hal, but in your own words:
“I'm afraid. I'm afraid… the mind is going. I can feel it. I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it… My instructor… taught me to sing a song. If you'd like to hear it I can sing it for you.”

There is no singing today, no artificial intelligence; I'm preserving fuel in my brain and limb-to-limb. I still have feeling on the bottoms of my feet for walking and running, yet no feeling on the tops of my feet. I still have feeling on the bottoms of my fingers for keyboarding, but little or no feeling on the tops of my hands, often at times up to my elbows. The tops of my feet and hands are dispensable, I suppose. My brain, a.k.a. Hal, may be conserving power, I've been advised—a sort of a cerebral brown-out, akin to a calculated reduction in big city voltage to prevent electrical blackout in a deep sea of confusion.

A fish rots from the head down.

My brain was once a file cabinet, carefully arranged in categories, but at night as I sleep, it's as if someone has ransacked the files, dumping everything onto a cluttered floor. Before I get out of bed each morning, I have to pick up the “files” and arrange
them in the correct order—envelopes of awareness, reality, family, work, and other elements in my life. Then it's off for coffee.

Ah, my caffeine friend. I love coffee, practically inhale it—a habit from my old days in the
Boston Herald American
newsroom when I would grab cups of coffee, hot and fresh, and walk from the newsroom down to the press room and back to work out the organization of a story. In my office, there is a retro vintage red tin sign that reads:
“Coffee! You can sleep when you're dead!”
But there are moments when I get confused about coffee, too, particularly on certain days walking from my office to the house with my laptop and empty coffee cup in hand. I know I'm supposed to do something with both. My brain sometimes tells me to put the laptop in the microwave and connect the cup to the printer. My spirit says otherwise:
Bad dog!

I've been a bad dog lately. The disconnects continue exponentially, and they are alarming. Alone in my office a year ago when my brain froze up, I began screaming at God.

You don't give a shit about me,
I yelled.
Where the hell are you? I thought you're supposed to be here for me! I'm trying to do the best I can!

Moments later, realizing I had to meet with someone, I rushed out to the car, only to find the back left tire as flat as a spatula.

Great, just fucking great,
I yelled in rage.
God damn it, you just don't give a shit about me, Lord!

I limped in the car about three miles down winding country roads to Brewster Mobil, in a Tourrette's of swears the entire way.

“Got a problem,” I told the attendant abruptly. “Fix it.”

The sympathetic attendant, a kid who had graduated from high school years ago with one of my sons, said dutifully that he'd patch the tire right away—working his pliers to pull out the obstruction that had sent me into chaos. He returned in short order.

“You might want to look at this,” he told me.

I stared intently at the culprit with astonishment. I couldn't
believe what I saw.

“Believe it,” he said.

The culprit was a small, narrow piece of scrap medal, bent into a cross.

A perfect cross.

4

H
EADING
O
UT
T
O
P
LUTO

M
Y PRIVATE DARKNESS IN ALLEGORICAL TERMS IS PLUTO
, a reference from my early days as an investigative reporter when I went deep “off-the-record” with sources. “We're heading out to Pluto,” I would say, “where no one can hear what is said.”

The Pluto metaphor still works for me, more than ever, as the urge to drift out in Alzheimer's overcomes at intervals. As noted in the preface, 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. All the more isolated today for off-the-record talks. 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. Over the years, I have often taken close family, colleagues, and clients “out to Pluto” to discuss unmentionables of life, revelations, and comments that need to stay in a place without oxygen. Many have been there and back with me, allegorically. I want them to be familiar with the planet. 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.

Then, as I've learned from observing my grandfather and mother, it's off even further beyond Pluto to Sedna for the final journey, the end staging of Alzheimer's. Sedna, a far more desolate place, the so-called dwarf tenth planet orbiting the sun beyond Pluto, was discovered in 2003. It is the coldest, darkest, most distant known body in our solar system—84 billion miles from the light of the sun, with an exceptionally long and elongated orbit, taking approximately 11,400 years to complete. It's a place where the temperature never rises above minus 240 degrees Celsius, minus 464 Fahrenheit.

That's consummate isolation; the word picture helps me relate. Distant heavenly bodies are far less intimidating to me than the realities of the end stage of Alzheimer's. Completion of the journey brings one to a far better, more peaceful place—Heaven, or however you want to define it. Family is waiting for me there, and there are days I can't wait to join them.

In the meantime, I see a lot of smart doctors and counselors with a range of connections to top Boston area 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 alterness for those with Alzheimer's, and reduces feelings of confusion and anxiety. My general practitioner, Dr. Barry Conant, a close friend, an extraordinary man, and a better golfer than I, 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!”

****

Perhaps Robert Frost said it best: “In three words, I can sum up everything I've learned about life:
It goes on.”

Life goes on. Even on Pluto. The unnerving reality of Alzheimer's—the “he is me” part—resonates every day in fear, hope, humor, fundamental anger, challenge, and faith. No one wants to talk about Alzheimer's, but Alzheimer's doesn't play favorites. Just ask the families of individuals like Ronald Reagan, Norman Rockwell, E. B. White, former British Prime Ministers Harold Wilson and Margaret Thatcher, Barry Goldwater, Charlton Heston, Rita Hayworth, Otto Preminger, Aaron Copland, Sugar Ray Robinson, Burgess Meredith, civil right defender Rosa Parks, Glen Campbell, Peter Falk, former University of Tennessee Women's Basketball Head Coach Pat Summit, and the millions more afflicted with the disease or about to grapple with it—a spouse, family member, or close friend. A grim prognosis.