On Pluto (9 page)

“No,” he said, “Early-Onset Alzheimer's Disease.”

The words cut into me like a drill press.

“I can deal with this,” I said defensively. “This is not a surprise. I can fight it.”

My reporter instincts kicked in. I showed little emotion, just digested the diagnosis on a self-imposed deadline. Facts, get the facts straight. I first thought about my mom, about my grandfather; I knew the deal. I wanted more facts. This was no time for emotion. The vital questions of who, what, when, where, why, and how flashed through my head, which felt little sensation at the moment. I was afraid now to look at my wife, so I stared at Dr. Marks, trying to remain in a state of control that I had just realized was beyond me. After all, I'm a Baby Boomer and we're all in control. At least, we suppose.

Finally, I gave into the emotion.

I felt Mary Catherine staring at me. I think she must have known all along.

“What do we tell the kids?” I asked her. My voice splintered.

When you're married to someone for close to four decades—when you've been through all the “for better and for worse” throes of marriage, when you have a partner who knows you almost as well as you know yourself, when you've been in love, fallen out of love, fallen back into love, and drifted, then at a time like this, little needs to be said. We both knew what the future held. No one had to sky write. We were all about the kids.

Mary Catherine grabbed my hand, we nodded, and then listened to the doctor. The moment is embedded in my mind in a freeze frame.

Dr. Marks, a man of great compassion and incredible intellect, offered support, but got right to the point.

“You need to take the diagnosis seriously,” he counseled me in front of my wife, having been prepped in advance on my aversion to reality. “You have a battle ahead of you. I'm speaking to you as if you were terminal. Are you getting this?”

I was. There was hardly a tone of political correctness in his voice; I needed the reality check. You must know your enemy—study with military precision—to fight your enemy.

Alzheimer's is a death sentence. The words resonated
throughout my mind. I stared at Dr. Marks with the same vacant expression of looking out from the Sagamore. I felt the tears running down the sides of my face. My eyes didn't blink.

“A most unusual situation of a bright man who had the opportunity to witness dementia in a parent … with self-awareness of early symptoms within himself,” Marks wrote in his initial report, dictated on voice recognition software as if the report were being written in slow motion before me. Marks also observed that a previous brain MRI revealed some “frontal Flair/T2 changes, consistent with a previous head injury.”

“This may have ‘unmasked' Alzheimer's pathology,” he added, “but his genetic loading is striking … The brain SPECT scan is most compelling in clinical context for Alzheimer's.”

Marks encouraged me to remain as physically fit as possible “as he is to keep his cerebral blood flow out … 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 cognitive reserve.”

“The diagnosis has been made, in my opinion,” he concluded in his report, “… 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. The general point is there needs to be balance between a healthy desire to overcome obstacles and yet acknowledge fundamental reality.”

A final word of advice, Marks urged me to meet as quickly as possible with an estate attorney to protect family assets, given the statutory five-year “look back” during which a nursing home can attach personal properties and bank accounts. He also recommended that I designate a healthcare proxy, future caregivers, and assign power of attorney.

In the space of a bleak afternoon, my identity in the real world—my mind, along with the cherished red cedar shingle home that I had built for the family about 30 years ago, the one
with the high-pitched, red cedar wood roof on about two acres of farmland off a winding country road that was now a part of a National Register of Historic Places—was on hold.

There wasn't much more to hear or to say. We left the office, and drove home in silence most of the way. The stillness spoke legions. I couldn't wait to get back over the bridge, my Linus security blanket. Lots to digest quietly in a 45-minute ride home. The assimilation of urgency was choking—bucket lists of cleaning up relationships, end-time planning that we all like to put off, and the strategies of surviving financially, physically, and emotionally. Many before me and many today, I thought, have been captive in such a contorting state of affairs with a range of disabilities, health issues, and timelines. I wasn't alone. Yet, I felt so isolated.

I felt sad for my Mary Catherine. This wasn't fair to her. And I couldn't fix it.

Dammit, I couldn't fix it!

The tool box was empty. I couldn't repair my brain. Ever. Not even with duct tape. All my adult life, I had relied on duct tape to fix leaks from the upstairs bathroom in the kitchen ceiling, “repair” broken appliances, hang posters, fix a tail light, repair a garden hose, act as a big Band-Aid, steady a cabinet door, fix a hole in the wall, hold a car door shut or a car window in place, fix a toilet seat cover, hold a choke in place on an outboard engine for the boat, as a wiffle ball, a tool belt, and once, as a last resort, as an ace bandage for a pulled groin to get through the 5K Brew Run one hot August day in Brewster.

“How are you doing,” I finally asked, as if from Mars.

My wife, as author John Gray might put it, is from Venus. I love Mary Catherine, but often she doesn't want to be confused with the facts; she seeks a safe harbor, as any good sailor does. I fly by the seat of my pants. I find reality far below the surface, bottom fishing for answers. My wife, to the contrary, is more comfortable at sea level. You say “tomato,” I say “to-mado.” A
fixture in our marriage, but we ain't calling the whole thing off!

“Well, we have a lot to consider,” she said; an understatement that could fill the Grand Canyon.

I knew. Like me, she felt alone.

Then we came upon the Sagamore Bridge. That's when the faith kicked in—a bridge to a new reality, a new hope for me. I was going home, sanguine about the fact that I had some answers in hand. But for MC, it was new isolation this side of the Mississippi. Maybe her father was right. As we coasted to the crest of the Sagamore, “the seventh bridge of Dublin,” as it's called Eire, given the number of emerald transplants on the Cape, I thought of John Belushi in the classic movie
Animal House.

“What? Over? Did you say ‘over'?” the unrelenting Bluto Blukarsky declared at the Delta House, urging his brothers to fight on. “Nothing is over until we decide it is! Was it over when the Germans bombed Pearl Harbor? Hell no!”

Germans?

Hey, I was on a roll. So I charged over the Sagamore Bridge with a satchel of denial.

Life goes on, doesn't it?

5

“D
ENIAL
A
IN'T A
R
IVER IN
E
GYPT”

S
IGMUND FREUD HAD MUCH TO SAY ABOUT DENIAL
. Among the most influential and controversial thinkers of the 20th century, his work and theories helped shape our views of childhood, personality, memory, sexuality, and therapy. Denial (Freud called it abnegation) is a defense mechanism for one faced with a fact too uncomfortable or overwhelming, which one rejects—insisting reality is not true, in spite of crushing evidence. There are three fundamental types of denial, Freud suggests: simple denial, denying the reality of an unpleasant fact or situation; minimization, admitting a fact, but denying its seriousness; and projection, admission of both a fact and its seriousness, but denial of any responsibility in it.

Denial is a Rosetta Stone of modern life. When in doubt: deny, deny, deny. We see it in politics, in business, at home,
and then in the confessional. To précis Mark Twain in a Bronx tounge:
Da Nile ain't just a river in Egypt
.

After my diagnosis, I was in full-throttle denial, responding to a five-alarm call to arms: protect my wife, my children, myself, my business, and my friends. I had learned at the knee of my father, a master of denial, the Zen of creative drift. My dad brought denial to an art form with my mother in her Alzheimer's; it was a De Niro-like performance, struggling himself with circulation disorders, cancer, and early symptoms of dementia. In his 80s, he was driven by the fear that if my mother died—
Black Hawk Down
—no one would care for him, and that he'd be carted off to a nursing home, a dread dating back to the loss of his parents as a boy. And so he contrived a patchwork quilt of my mom—sort of a Stepford wife, the perfect caregiver. As the 1975 classic movie, based on Ira Levin's novel,
The Stepford Wives
, declared in promos:
“Something strange is happening in the Town of Stepford … where a young woman watches the dream become a nightmare … and realizes that at any moment, any second—her turn is coming.”

So was mine.

****

I hate suits. They make me uncomfortable, the corporate image, as well as the clothing. Particularly on a stuffy summer morning in June 2010 at the law firm of La Tanzi, Spaulding & Landreth in Orleans on the Cape. The building was filled with suits, a striking contrast just up the street from postcard perfect Rock Harbor in Orleans where charter fishing boats spill out into Cape Cod Bay to ply the rich fishing grounds of Eastham, Wellfleet, and Provincetown. As the lawyers plied their trade in designer attire, fishing boat captains minutes away, clad in bulky sweatshirts and faded jeans stained with fish guts and seagull poop, picked their way out of a narrow channel at dead low tide, searching for stripers and schools of blues on the horizon. The
contrast in cultures of the Outer Cape, one that gives definition to eclectic, was not lost on me. Nor was the moment.

In a small, lawyerly-appointed conference room on the west side of the building, the kind of gathering space that makes one imagine they are queued up for a fiscal colostomy, I sat next to my wife with a pile of legal documents awaiting my signature. I was here to sign my life away, a hand-off of assets—everything I owned, everything in the secular world that makes a male whole. In short, my identity—my material umbilical cord, as short as it is.

I felt like telling the suits in a quiet rage:
I can now say with great confidence on any given subject that I will forget more than you'll ever know!

For close to a year, I had been dragging my sorry ass on this hand-off, deflecting the well-intentioned counsel of financial, legal, and medical advisors. Legally, there is a five-year “look back” on admission to a nursing home and my advisors insisted that the clock started ticking now. In summary, if a person doesn't own assets for at least five years, a nursing home, by law, must enroll the individual as he or she is—in my case, as a destitute dumbass, just a step above a ward of the state. For such people, there is no encumbering the assets of other family members, even a wife. Point made, point accepted, life today sucks.

It wasn't as though I was flush with cash: a nice Cape home; a $1.2 million term life insurance policy (some “retirement plan”); a decent salary for someone independently employed on a short medical tether; and big long-term debt, enough to choke a Clydesdale. Not the kind of particulars for an obsequious profile on the business pages of the
Boston Globe
. When one gets to a certain stage in life, individuals often contemplate the contents of an obituary more than a resume. An obit is more enduring. My obit bucket list is formal appointment to the Brewster's Ale-wife Committee—the old salts of the town that annually prepare the town's ancient herring run for the arrival in early spring
of thousands of herring (called alewives), navigating the churning waters of Cape Cod Bay to swim upstream and spawn in inland mill ponds. Legend has it that the name “ale-wife” comes from comparison generations ago with a corpulent female tavern keeper in Nova Scotia. Just sayin'.

“But don't be a dumbass,” good, loving friends had counseled me. “Swallow your damn Mick pride and just sign the documents. Hand your wife the keys, the kitchen sink, and everything else. You owe that to your family.”

I fully understood that, but knowledge often collides with emotion, and on this afternoon, I was adrift in doubt. The lawyers were resolute that all provisions must be properly in place, initialed, and signed correctly, so I could have the proper legal protections in place.

I was ready, somewhat kicking and screaming, having just read
Still Alice
on advice of my doctor, who called the Lisa Genova best selling novel “remarkable” in its insight, yet chilling in its supposition. I had put off the reading for almost a year, fearing the story of fictional Alice Howland, happily married with three grown children and a second home on the Cape, a distinguished Harvard professor who noticed that the forgetfulness creeping into her life had given way to wholesale confusion, then the devastating diagnosis: early-onset Alzheimer's disease. I couldn't put the book down—inspiring, edifying, and a forbidding reality check, all at once. I was looking into a mirror. I was Alice,
sans
the dress. I keep the book on my desk for reinforcement. I was now ready to let go of the minutia of life. At least trying.