On Pluto (13 page)

****

Not far beyond the bend of Doanes Creek in Harwich on the Cape, back on the lip of Nantucket Sound at the mouth of stately Wychmere Harbor—a full circle of geologic perfection—is the confluence of all that is Cape Cod.

At the entrance to the harbor, marked by a sturdy stone jetty, is a graceful wide swath of sandy beach, one of the few accreting beaches on the Cape and growing at a rate of up to seven feet a year, given the steady ebb and flow of littoral currents.

Inside the harbor to the north is a row of sleek sailboards and pleasure craft in summer, guarding like sentinels on watch the comings and goings of the channel and overlooking the site of the legendary Thompson's Clam Bar, once one of the largest seasonal seafood restaurants east of the Mississippi. It served some of the finest clams known to man. Patrons would wait up to an hour-and-a-half for a table in the 450-seat waterview restaurant, turning out more than 2,000 seafood dinners on a hot July night.

The venerable structure is now the cornerstone of the exclusive Wychmere Beach Club in Harwich Port, a luxury private club.

On cue the afternoon of Sunday, June 19, 2011, the beach club's opening, the sun was glistening high above Nantucket Sound. My job as a media consultant was to lure the press and work the crowd over pricey Chardonnay and Cabernet and an assortment of fresh seafood and a raw bar that you would find at the finest New York and Boston bistros. I do nice work, arriving fashionably late, but on cue, and dressed in Tommy Bahama chinos, saddle shoes, and a shirt I bought in Dublin that looked like it was right off the deck of the Titanic. No assembly instructions required on this assignment, I assumed. Everything was perfect. Even my good buddy, John Piekarski, was there, standing by the pool with a handful of oysters and chatting up the elite. John hadn't told me he was coming.

I interrupted his conversation with a definitive pat on the back. “This guy boring you?” I asked.

The cold stares, even from John, could have frozen my retinas, only it wasn't John. It was a high roller from the city, not the kind of guy who appreciated a slap on the back and a stab in the shoulder from a less-than-perfect stranger. I finally realized all this after standing inelegantly next to the man for about a minute. With dots in the brain reconnecting, it wasn't even close. This guy didn't even look like John now.

So, I did my best Roseanne Roseannadanna of SNL fame, the character perfected by Gilda Radner: “Well, never mind.”

“My mistake,” I apologized. “Sorry!”

I walked away, feeling a pulse in my throbbing head.

It was the first time I had such an extraterrestrial experience. I have known John Piekarski for 30 years. I immediately thought of my mother and the times she had such disconnects. The realization was deadening. I moved on. All was good now, so I thought. When you fall off a horse you get right back on. Time to start up another conversation, I reasoned.

“You probably don't know me,” I said minutes later to another gentleman standing near a walkway that led to the breach. I reached out my hand. He shook it, and laughed.

“Funny!” the guy said, shaking his head.

How did I go from being an idiot to a funny man in the space of a few minutes, I wondered?

I looked at him closely, stared intently. No recognition.

“Sorry I didn't get right back to you after our meeting the other day,” the man apologized.

The deadness was upon me again. Like the dutiful student, I started asking questions, trying to fill in the blanks, stitching together a story. Something. A clue that would give me direction, edification. Nothing. The mind was blank.

I pursued a line of conversation and questioning, with a reporter's instinct—small talk about sports and the summer ahead. Don't panic, stay in the moment, never let on. As Roman Emperor and stoic philosopher Marcus Aurelius advised in the first century, “Confine yourself to the present.” I've employed this strategy for years; it's a wait-and-see approach until I can either make a connection or exit the conversation gracefully.

“Greg, I want you to meet a friend,” he said of the man to his left. “I think you can help him in his business.”

Both had their business cards out on a table. Finally, a clue.
Shit.
I realized then that I was in conversation with a close client
I had known for years and whose wife is a friend of mine.

Coming full circle, I suppose the silver lining in Alzheimer's, if you're good on your feet, and even if you're not, you get to meet new friends daily.

****

I would have that chance to meet new friends again months later at a consultant meeting at Gillette Stadium in Foxboro where I've been a consultant to the Kraft Group for years, working in areas of community outreach and communications strategies. I arrived early for a meeting with Scott Farmelant, a friend and fellow consultant, a principal of the Boston communication firm Mills Public Relations. Months earlier, I had confided in him about my Alzheimer's diagnosis, as doctors had suggested with close clients and consultants. We discussed future projects and Scott's willingness to help fill in the blanks outside of my protected box of writing and communication skills. It was a business arrangement, born out of friendship and Scott's empathy for the progressive disease.

I was a bit out of sorts that day, but covering myself in the best reportorial spin. Some of the dots, as they often do unannounced, weren't connecting. I had been off my medication for a day or two—simply forgot to take it. But I was determined to fight through the haze on this brilliant sunny January day.

As I entered the room, I didn't recognize anyone; they looked vaguely familiar, but assumed a new crew of campaign workers had moved in. A guy to my left, a friendly, enthusiastic individual, started chatting me up about the campaign.

We talked about project benefits, opposition issues, media, and messaging. He clearly knew me, but I was embarrassed to ask who he was.

“Let's go grab some coffee,” he said after some chat.

“That's good with me,” I said, “but I'm waiting for Scott Farmelant, then we can all go.”

There was silence.

The guy put his arm around me and whispered into my ear, “Greg, I'm Scott!”

Altogether mortified, but not off my humor game, I replied, “Well then, that's good, Scott. Now we don't have to wait for you.”

We walked out of the room for coffee on a one-two count, and never spoke about the disconnect again. Scott's a good friend.

8

R
OCKS IN
M
Y
H
EAD

D
R. SEUSS ONCE ADVISED, “YOU'VE GOT BRAINS IN YOUR HEAD
. You have and 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 mother lode 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?” And there have been times when I have emailed a client a newspaper piece on a story pitch, carefully checking the story for date and subject matter, only to find out later that the clip was several years old and had nothing to do with the story at hand. I lost a $5,000 monthly retainer that way. I don't blame the client; I blame myself. I blame the disease.

Such mental collapses are motivation to dig deeper into the cognitive reserve, knowing in the moment that I can't go to the
tank forever. The process of fighting off symptoms is exhausting, and yet exhilarating when one succeeds. It is a forceful fight for clarity, one that I win more than I lose now. For me, it's akin to the olfactory phenomenon displayed in Atlantic herring, alewives, as they make their annual migration at the strike of spring—just down the street through the ancient Brewster Herring Run, thousands of them fighting, like salmon, against a flush of water, as the alewives rush in gut instinct up the slick, steep water stone ladders of the run from Cape Cod Bay to the Upper Mill Pond to spawn in fresh water kettle ponds where they were born. The fish repeatedly are flushed back by cascading water, hitting fish heads on rocks, yet instinctively climb the ladder again.

Cognitive reserve in primal nature! Late mentor John Hay wrote about the Brewster marvel in his inspiring book,
The Run
, connecting dots to the survival instinct in all of us. “The fish kept moving up,” he observed. “I watched the swinging back and forth with the current, great-eyed, sinewy, probing, weaving, their dorsal fins cutting the surface, their ventral fins fanning, their tails flipping and sculling. In the thick, interbalanced crowd there would suddenly be a scattered dashing, coming up as quickly as cat's-paws flicking the summer seas. They have moved by ‘reflex' rather than conscious thought.”

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 am, and a phalanx of the imagined approached me. I swiped at them; they disappeared.