On Pluto (19 page)

“I'm your mother!”
she would scream at me repeatedly, as if to convince herself. I thought at the time she was pulling rank, but she was just seeking reinforcement. I never saw it coming. We had chilling moments of conflicts, both of us pushing back at one another with the force of a wave crashing a sturdy bluff. Neither of us moved.

My 40
^th
birthday was a ceasefire, a surprise birthday for which everyone dressed as a person of history. My mom came as Rose Kennedy, attired in a dark wig with all the graciousness of a Kennedy; it was an appropriate rendering, given their collective love and respect for family. Wrote Kennedy in her 1974 autobiography,
Times to Remember
: “I looked on child rearing not only as a work of love and a duty, but as a profession that was fully as interesting and challenging as any honorable profession in the world, and one that demanded the best I could bring to it …” My dad, in contrast, came as Panama's Manuel Noriega, the Latin strongman accused of drug trafficking, racketeering, and money laundering. Dad had filled condoms with sugar looking like hanging bags of cocaine tied to the buttons of his shirt. It was an unforgettable night of family and friends laughing, drinking, and dancing. It was one of the last times that I remember my mother fully articulate and bountifully engaged. She wrote candidly in a birthday scrapbook of recollections, a testament that defined our relationship:

                 
I remember when Greg in the Third Grade served his first Sunday Mass as an altar boy. He was with a more experienced altar boy, and somehow got confused and ended up on the side of the altar with the bells. In those days, bells were a big thing at Mass. Greg was terrified. At the time of the consecration of the host, no bells rang. Greg froze! The other altar boy kept telling Greg to ring the bells. Still no bells. Repeating this several times had little effect, except Greg did pick up the bells; he just couldn't ring them. He froze again. No bells. Finally, the exacerbated priest, host in hand, turned and yelled at Greg, ‘Ring the God damn bells!' At that point, Greg started ringing like St. Patrick's Cathedral, and didn't stop until the priest turned around once more and said, ‘Greg, stop the bells!' The nuns were all laughing, the congregation was laughing. I was crying.

We had each other's back, just didn't know it at the time. Mom reminded me that night of the time I was asked to read a scripture verse at my brother Paul's wedding. Typically, I lost my place in the reading, but instead of panicking, I relied on my altar boy training and earlier counsel from her to ad lib when your back is against the wall. So, I
ad libitum
the balance of the passage—tossing in a few “thou(s)” and some fire and brimstone. No one caught on, but my mom. When I returned to the pew, she patted me on the knee and said, “Nice work: Matthew, Mark, Luke, and John would be some proud!”

Ad lib was to become a cornerstone in our lives; in the months and years to come, it would become more apparent, as I began experiencing similar moments of confusion, recurrent memory loss, trouble at times finding the right words, problems with balance and problem solving, and a pendulum of emotions that I couldn't manage. We talked about it; the symptoms
wouldn't wane for either of us. Following my mother's example, I just ignored the signs, focusing instead on work, my spouse, children, and friends—a focus, however, that fades as the disease evolves and one is wedged in isolation.

As a caregiver for my mother and breadwinner of the family, I found it difficult to ask for help. My role had been on the giving, not receiving, end, and to reverse roles was an admission of failure. I preferred, like my mother, to keep to familiar patterns of behavior, the routine, rather than concede the awful changes in play. I was trying desperately to hold onto who I was for as long as possible, knowing the disease ultimately would rob that from me.

We were both feeling terrible isolation. My mother had only two good friends on the Cape, my father notwithstanding—Tom and Mary Collins, an affable retired couple, who lived directly across the street on Cestaro Way. Mom spent much time with them. They didn't seem to mind her quirkiness. They met for lunch, for talk, for end of the day cocktails on occasion. One afternoon about ten years ago in early fall, Tom came over to the house to chat with my mom. My dad had gone for the New York papers. Tom and my mother talked about family, politics, sports, and anything else you could squeeze into a half-hour visit. When the conversation ended, he turned to my mother as he walked out the door.

“You know, Ginny, I've lived a good, full life,” he observed. “As far as I'm concerned, if the Lord wants to take me, He can have me any time He wants!”

Tom gently hugged my mom. She waved to him as he walked across Cestaro in his characteristic enthusiastic gait. He opened his front door, stepped across the threshold, then dropped dead instantly. Bang. Massive heart attack. The Lord often takes us at our word.

Mom was devastated. She was never the same. She let go a bit that day. Within a few months, Mary had moved back to
Connecticut, and Mom was alone again. I noticed a softening in our relationship. Beyond my father, absorbed in his own medical issues, she now had no friends on the Cape, and thus turned to me, emotionally and for chores around the house, as she faced down her demons.

****

I always had thought of myself as Mr. Green Jeans, the genial sidekick to Captain Kangaroo. Mr. Green Jeans always performed ably with hand puppets, talked to Grandfather Clock, introduced live animals, taught little children to care for the Earth, but he couldn't fix squat. Neither could I. Accepting of this, my mom kept it simple, just asking me in late spring to install the bulky window air conditioner in the living room, replace screens with storm windows in the fall, paint the outside trim, clean the gutters, and wrap the hoses for storage. I think she just wanted me around the house to talk. She was lonely, and when she wasn't talking, she just stared out of the window. Blank stares, as if she were on Pluto.

On a late Sunday afternoon in October 2000, I finally started to get it. Mom asked me to take her to the bank; I wasn't sure why. She said she needed to use the ATM. A banker earlier in life and one who had used a cash card often, she told me she was having difficulty with the machine. She couldn't figure out how to use it; tried several times. She was completely out of sorts.

“Greg, I'm scared,” she told me in the bank parking lot. “I can't do this anymore. I get confused all the time. I need someone to talk to. Will you help me? Please don't tell your father!”

I will never forget that day. The sky was gray, the wind was blowing on shore, and there was a penetrating chill in the air.

“Sure, Mom,” I said, beginning to realize her inner fear of losing control. “We're good now. We're just good, Mom.”

I never looked back on the relationship, my anger over her rants at me; I only looked forward now. I was Mr. Green Jeans,
wholly useless, yet destined to be a caregiver. Hand me the Phillips screwdriver! Just tell me which end is up.

****

Confusion in time gave way to chaos. My mother began putting garbage in the trunk of the car—forgetting to take it to the dump, opting to horde. The maggots and stench were revolting, yet my siblings and I were reticent to deal head-on with it. Mom began hiding money in the house from my father, wads of it; she slept in her clothes; made up words for lack of recall; often refused to shower; and grabbed for liquid soap at times to brush her teeth. Then there were the “menu issues.” My dad in his wheelchair would ask for ice cream for dessert, and she'd serve him eggs, sunny-side up. The behavior upset me and equally distressed my father, who observed it nightly. At first, we collectively passed it off as a change-of-life transition, but the shift intensified.

After all the anguish in our relationship, my mother and I were on parallel tracks. She was years ahead of me, but I could see her in the distance, not sure where she was headed. Yet, I followed. Then one day, my ticket to Pluto arrived by way of a blissful bicycle ride from Brewster. On a postcard-perfect day, I had taken my son, Conor, and his friend, Ryan White, both about 12 at the time, on a trek along the Cape Cod Rail Trail to Eastham, about a 15-mile ride, to visit my mother—a pastoral passage beside sparkling cranberry bogs, lush meadows, saltwater marshes, and fresh water ponds. In all ways, it was a cleansing, majestic Cape Cod day. Mom, however, was more muddled than usual. With the temperature inching toward 80, she scolded all of us for not wearing winter coats. To take the “chill” off, she insisted the boys don these heavy, oversized sweatshirts from a spare bedroom closet, largesse from winters past. They balked at first, but sensing her resolve, I instructed them to oblige.

“Mom's right,” I summoned. “It's cold out.”

Conor, having witnessed corresponding episodes in the past, concurred, and Ryan graciously consented. The second we peddled out of the driveway, turning left on Cestaro Way toward the bike trail, the boys ripped off the sweatshirts and tossed them at me.

“No way, we're not wearing these things!” Conor declared.

I thanked the boys for being good sports, and draped the heavy sweatshirts across the handlebars of my bike as we headed back to Brewster, taking in a panorama of primal nature. I was euphoric, in the Zen, incredibly at peace. I felt like a kid again, and plied the trail in full speed far ahead of Conor and Ryan. Faster, faster! The wind was soothing. In the moment, I recalled that, as a youth, I had prided myself on riding a red, three-speed Schwinn racer, no handed! And like a child, I wasn't wearing a helmet that day. For 30 seconds, I peddled back in time, a kaleidoscope of images from youth: Rye Beach, the ball field at Disbrow Park, town marina, and out to the American Yacht Club where you could see the Manhattan skyline and Twin Towers in the distance. Then, as abrupt as a clap of thunder, the imagery shifted. I sensed something awry. In horrifying slow motion, what seemed like frame-by-frame, I witnessed the sweatshirts on the handlebars slip slowly into the spokes. My bike, at full gallop, stopped on a dime, and I was hurled head first over the handlebars about 15 feet into the air, but with the presence of mind at least to shield my left hand over my forehead before impact. I hit the tarmac with the force, it seemed, of a .45 caliber bullet, the impact cutting deep into my knuckles right through to the bone. On the second bounce, my face hit the pavement in a pool of blood. I was numb, out of body, yet felt something cold pouring down my face. As I finally stood up, I must have looked like the lead role in a Bela Lugosi movie; in pure fright, Conor and Ryan sprinted off into the woods. Two Samaritans sitting on a nearby back deck came to my aid, and collected the kids. The rest is fleeting; a half hour later I was rushed to Cape Cod
Hospital in an ambulance, sirens ablaze. After multiple stitches to the head and left hand, I was discharged.

Little did I know that I had unleashed a monster.

12

P
ASSING THE
B
ATON

T
HE LEGENDARY TRACK STAR JESSE OWENS FACED A MONSTER
. In the summer of 1936, just years before the start of World War II, demon Adolf Hitler and his Nazi faithful were goose-stepping across Eastern Europe. At the Berlin Olympics, Hitler sought to showcase purported Aryan superiority and chastised the U.S. for engaging gifted African Americans, whom he termed “sub-humans,” to compete against his Aryan Nation. Owens stared the demons down, winning four gold medals: 100 meters, 200 meters, long jump, and 4x100 meter relay, the final affront to Hitler, making Owens the most decorated athlete of the 1936 Olympics. Owens ran the first leg of the relay in a record 39.8 seconds, picking up a two-meter lead, and resolutely passing the baton to Ralph Metcalfe, an African American who was the fastest human from 1932 to 1934, and later served in
the U.S. Congress. A purposeful passing, at this critical moment in time, propelled Metcalfe to a four-meter lead, the measure of success. Foy Draper, who ran the third leg, maintained the lead, and 100-yard world record holder Frank Wykoff, with baton firmly in stride lengthened the winning margin to 15 meters, beating his Italian counterpart, Tullio Gonnelli.

An efficacious passing of the baton in a relay race is as elemental as lacing up a pair of running shoes, and has relevance in the race against Alzheimer's. Timing is critical. When a runner hits a mark on the track, usually a small triangle, the awaiting runner—on cue and face forward—opens a backward hand, and after a few strides, the lead runner has caught up and exchanges the baton. Often, the lead runner will shout “
stick!
” several times as a signal for the awaiting runner, glancing behind, to put out a hand. Passing the baton has significance on many fronts—on a track, at home, at work, in disease, and into eternity. In the relay race of life, one can't run alone. You sprint your leg as best as possible, then hand off with precision, letting others carry you as they can. Looking back, I realize now that my mother, in trying to outrun Alzheimer's, was yelling at me,
“Stick … stick … stick!”

****

You can see eternity from Eastham and elsewhere. Ever look between two facing mirrors, at home, in a barbershop or a beauty salon? You face a seemingly endless line of images fading into the distance. In principle, it's called “looking into infinity.” Each mirror reflects the image into the other mirror, bouncing these reflections back and forth into infinity—gateways, some speculate, to parallel universes. If you squint, you might see Pluto and beyond.