On Pluto (12 page)

Yet, on a cold January night a year later, I was sleeping on the couch again, my wife was in the throes of a horrific sinus infection. I got up, as I do every two hours, just to walk around the house, often aimlessly. This time, I had to take another pee, and on the way back to the couch, I checked the digital clock on the stove. It was 4:12 am, still dark, black as night. As I walked to the couch, I noticed something moving slowly to port side of the wood stove where embers were alight. It was an image of sorts, but instinctively, I was serene with it. At first, I thought it was just another visual misperception, or as we scribes might correctly call it, another hallucination. I was wide awake at the time, focusing intensely on the image. I saw the outline of a woman. She had blonde hair, dressed in clothing familiar to me. The image moved slowly toward me, then backward, then toward me again. The woman was beckoning me with her right hand to follow. She kept summoning. I realized then it was my mother, or a likeness of her. The shadows of a man stood behind. Slowly, she summoned to him, as she had with me, to move forward. I wondered if it was my father. The image in the shadow hesitated, and I thought in the moment that if any of this were real, my father was probably saying to Mom, “Ginny, let's not scare the shit out of Greg!”

I was at peace, but it wasn't my time to move forward. So,
I turned on a light. Saw nothing. I turned it off. Saw nothing. Then I went back to bed in great calm, intuitively feeling that I wasn't alone. I told my wife about the experience the following day. I joked with her that my mother was looking for one of her recipes. I want to believe it was my mother, but what if it wasn't? What terrifies me is yet another manifestation of this disease.

7

S
MART
P
ILLS

S
LEEP IS GOOD FOR THE SOUL, BUT WAKING HOURS
are when work gets done, with the brain in the “on” position. Whatever one's aspiration in life, an engaged brain is fully focused with vigorous mentoring. Among great tutors in my life, I had exceptional coaches in high school at Archbishop Stepinac High School (class of 1968) on Mamaroneck Avenue in White Plains, five exits up Route 95 from the Bronx. I had a passion for sports, but enjoyed the expression of theater and turned to the stage. Drama coaches Father James Cashman and Father Bernie McMahon were particularly inspiring, instructing to express, yet stay within, to never show fear, to ad lib in a manner that always built confidence. They were lifelong teachers. Two of their prized students went on to far greater successes—Academy Award winning actor Jon Voight, class of 1956, and Alan Alda,
class of 1952, of “MASH” fame and other generational movies. But the actor I seem to emulate most these days is the late Lenny Montana, who played Luca Brasi, the dim hitman in
The Godfather.
My favorite scene is Luca Brasi's reprised, slow slur, preparing himself for a wedding salutation to Don Corleone, just to get it right.

“Don Corleone, I am honored and grateful that you have invited me to your home on the wedding day of your daughter. And may their first child be a masculine child,” Brasi kept practicing in a slow, deliberate, and discomfited pace.

Before business meetings these days, before every family gathering, every outreach, every salutation, I rehearse my lines, just to get them straight. I prep for the quips, the thoughtful commentaries, and salutations. I study the lines. Sometimes, I keep crib notes. Nothing is ever left to chance these days. Then, it's showtime! I'm pretty good at it; damn good, in fact. Fathers Cashman and McMahon taught me well—teachers who trained me with great insight, humility, and faith in one's ability to row harder.

You have to row harder with dementia, or you drift. In the sport of crew, with roots dating back to ancient Egyptian times, you must work as a team, propelling the racing shell through churning waters. But in Alzheimer's, one must pull an oar with the strength of a strokeman, only there is no one else in the shell for the “catch” and “recovery.” At the catch, a rower's hips are aligned with the oarlock for maximum thrust of the blade in the water. The rower then applies pressure to the oar by pushing the seat toward the bow by extension of the legs. As the legs approach a full extension, the rower pivots the torso toward the bow, and then finally pulls the arms toward the chest. The hands meet the chest right above the diaphragm, and then drop enough to take the blade out of the water. At the very end of the stroke, with the blade still in the water, the hands drop slightly to unload the oar so that spring energy stored in the bend of
the oar gets transferred to the boat. This eases removing the oar from the water and minimizes energy wasted on lifting water above the surface in splashing.

The recovery phase follows the drive—removing the oar from the water and coordinating the body movement to move the oar to the catch again.

And so it is with Alzheimer's—a catch and recovery to engage a brain on its way to deluge.

Sure, there are many who encourage from the shoreline: family, friends, doctors, and colleagues, many of them not fully understanding why they are waving. In Alzheimer's, one is in the boat alone. So, you row a little harder!

****

Dementia today comes in many flavors, a cornucopia of medical terms. Old-style labels like “hardening of the arteries” have given way to a more technical lexicon. Now there are more than 80 types of dementias identified. Alzheimer's is the most prevalent; others include: Lewy body dementia, Creutzfeldt-Jakob disease, Huntington disease, frontal or temporal lobe dementias (including Pick's disease and Primary progressive aphasia), HIV-associated dementia, Dementia pugilistica (Boxer's Syndrome), Corticobasal degeneration, and other genetically related dementias.

The progression of Alzheimer's can be slowed, to some extent, with state-of-the art prescriptions used to diffuse symptoms, producing “decoy” chemicals that trick enzymes that break down the transmitter chemical (acetylcholine), allowing it to perform as well as it can. I take a daily cocktail of drugs. The combination dosage helps slow the rate of decline on good days. The Aricept (donepezil) works to improve the function of the nerve cells by slowing a breakdown of the transmitter chemical acetylcholine. Namenda (memantine hcl) assists in blocking transmission of chemicals in the brain that kills nerve cells.

Close friends call them my “smart pills!”

Consider the 1982 movie
Tron
where a computer programmer is transported inside the software world of a computer mainframe and engages terrifying sequencers in an effort to get back. That's my world today, and the destiny of millions of others, unless something is done to subdue the insidious intruder.

****

The mornings for me are always the same. In disarray. At first light, I must focus on the five Ws: the who, what, where, when, why, and how of life, as if rebooting my faithful MacBook Pro before tossing the covers and organizing the scattered files of my mind. I do it out of instinct, but there's always the depression, fear, and angst to walk through, and that's just on the way to the bathroom where, on doctors' advice, I've begun labeling the toothpaste, liquid soap, and rubbing alcohol. I have attempted often to brush my teeth with liquid soap, and on two occasions gargled briefly with rubbing alcohol. Scope is far better!

Then, I go deep into my lists—notes for everything, printed and on my iPhone calendar with repeat advisories. My life has become a strategy. I have a playbook, a script, backup for everything. Sometimes, the stratagem is just showing up, other times it's deflection; more often, it's an ongoing quest for excellence, understanding as best as possible the new boundaries. I have a formidable enemy—the mind. It used to be my best friend. I don't see any chance now for reconciliation.
Illegitimi non carborundum
, as I say: don't let the bastard grind you down.

At twilight, I'm back on the mat with the monster. That's why I run several miles each night to increase the cerebral flow as the sun sets, and more confusion takes over; I run until my legs give out. Due to my recent diagnosis and pain of acute spinal stenosis and scoliosis, I'm unable to run as I did, so now I crank the treadmill at the gym each night to an elevation of 15 at a speed of up to 6.2, and race walk four to five miles. The pain
is still present, though there is less pounding on the spinal cord. My daily physical routine helps reduce end-of-day confusion and restlessness, common in dementia patients and known as “sundowning,” caused as light fades to black. This can be a time of greater rage, agitation, and mood swings, much like dandelions that behave differently at night; their heads close up tightly as the sun goes down.

On doctors' orders, I try vigorously to exercise my body and mind every night. After the gym, I usually write for two hours. Medical experts encourage those with Alzheimer's and other forms of dementia to pursue the creative arts, particularly writers, musicians, and artists with the disease. The writing makes me feel whole again—until the confusion takes over.

In Alzheimer's, mental and physical fatigue increases, and the restlessness can lead to pacing or wandering because an individual can't sleep. Theorists say that with the development of plaques and tangles in the brain related to Alzheimer's, there may be a disruption at sunset in what doctors term the “suprachiasmatic nucleus,” associated with sleep patterns and changes in lighting—bringing on a sundowning effect.

With this disease, the sun rises and sets on a foggy bottom, a haze at times that precludes one, among other things, from recognizing familiar faces; or worse yet, the disease transposes a face, like the 1997 action thriller,
Face/Off
, starring Nicolas Cage and John Travolta. My life now, it seems, is a series of anecdotes. In Alzheimer's, there are times when one sees and experiences things that are not real, and times when one can't distinguish people and places that are.

There have been mornings when I haven't recognized my wife lying next to me. I knew I was supposed to be in the bed with this attractive woman, but I wasn't sure who she was. She looked familiar, but I had no understanding for several minutes of my relationship with the woman I have slept with for 37 years. It is disturbing; I never let on to her about the shame of it.
She was asleep, so I just let it go.

And then there was the time at Kennedy Airport in New York in November 2010, awaiting my brother-in-law, Carl Maresca, and two of my brothers, Tim and Andy, for a flight to Shannon on an annual visit to Ireland, a place that restores the thinker and writer in me.

We were flying into Shannon to tour again the bucolic West Coast, a place that has attracted writers and artists for centuries, from Dingle to Donegal with its tiered cliffs, surging green pastures framed with moss-covered stonewalls, and snug, mottled villages that inspire poetry. From there, we were to hop a train cross-island to Dublin to take in this magnificent ancient city at the confluence of the River Liffey and the Irish Sea, a city that traces its beginnings back to 140 AD and claims among its sons James Joyce, William Butler Yates, and Samuel Beckett.

Sitting at the gate at Kennedy, I thought in long-term memory about walks through Trinity College, founded in 1592, along O'Connell Street, the site of the 1916 Easter Rising, the War of Irish Independence, and the Temple Bar,
Barra an Teampaill
in Gaelic, an area on the south bank of the Liffey. This cultural, and yes, pub district, likely received its name from the Temple family, who lived here in the 17
^th
century; Sir William Temple was provost of Trinity College in 1609. In the core of the Temple Bar is Fishamble Street—the site of the first performance of Handel's
Messiah
on April 12, 1742; the annual performance of the
Messiah
is held on the same date at the same location. At a nearby tavern on Eustace Street in 1791, the republican revolutionary group, the Society of the United Irishmen, was formed. The group launched the Irish Rebellion of 1798 in an effort to end British rule over Ireland and the creation of an independent Irish Republic. In a maze of narrow, cobblestone streets, the Temple Bar captures the spirit of Dublin.

I'd rather muse on history than reality—the past is more redeeming to me than the future. It is a place of peace. My daze,
call it reverie, was interrupted by a tap on the back.

“Hey, Lunchie!”

I earned the moniker “free lunch” years ago from my father because of my penchant for a free lunch, handouts from the nuns, and anyone with a basket.

“Hey, Lunchie!” the man called out again.

I stared at him intently, and didn't know him. I was getting pissed that this man in his 60s was calling me “Lunchie.” New Yorkers are always in your face.

“You ok?” the stranger inquired.

Do I know you from Pluto?
I wondered.

I stared at him again, carefully studying his expression, then began to connect the dots. The mosaic slowly resonated with familiarity. I focused in again. It was my brother-in-law Carl—a first-generation Italian American with Solarino roots. I've known him from the second grade; we attended Resurrection Catholic School in Rye, he has always been an older brother to me, and always has my back.

“I'm your legal guardian on this trip,” he said with a smile. “So shape up! We're going to make you wear a sandwich board with a phone number on the back of it; if you get lost, people will know who to call.”

Gotta love those Italians! And I do. They are the salt of the Earth, with a little oregano on the side.