The world in which I grew, long gone now, was made serene for me by those who worked hard to love me. That happy private world has disappeared and the only things of that time to remain are memories, and now they slip away. Love can help stabilize my unsteady life, but even it lacks the power to restore my spirit and return me to the happy world as it was before Alzheimer's darkened my sight and roiled my soul.
Joyce gave me a beautiful set of CDs this Christmas featuring jazz of the past, the time of my youth and earlier. I was delighted and eagerly picked a disc. This was new technology with which I was unfamiliar. We called Francesco to find out which side of the disc was up. I felt very old that day, older than I have ever felt in my life.
One Halloween night, teenagers, many of whom I knew from high school classes, rampaged through Westover, a small wayside shopping strip surrounded by brick apartments a few blocks from where I once lived on 14th Street. These teenagers, from middle- and upper-class families, ran amok breaking store and car windows, and flattening auto tires in a darkness they thought protected them. They swirled through the streets yelling obscenities and owning the night. There were many bright students I knew in the group. It took the quiet, sedate community by surprise, leaving parents and county
THOMAS DeBAGGIO
officials breathless, befuddled, and worried. It was an event its participants could not fully explain, an explosion of undirected youthful energy exploding in a wicked show of group dynamics.
Many participants in what was labeled a riot were called before juvenile judges at the courthouse. What was happening in the shadows of world wars as America muscled its way to world power and small towns emptied to fill cities in a catastrophic embrace?
Something has been lacking in these words I have scribbled. It is the life around me in the members of my family. They are wary of losing their privacy in the onslaught of my words and careful to hide their sorrow from the world. This is a very private thing I have put on display, a show of nakedness unusual for a man and difficult for his family. They are hesitant to put their thoughts in words the world will read, a method of self-exposure with which they are unfamiliar and wary. I continue to urge them to take notes of their thoughts and feelings. In the meantime, I write what I observe of them and provide them with the ability to amend my words.
My high school days were suspended in a time of hope and evil. The beginning of the end of government-ordered racial separation began with a U.S. Supreme Court decision. In Arlington there was no greater evil, at the time, than George Lincoln Rockwell's American Nazi Party. Rockwell took residence in the county with the help of several prominent people, including at least one person on the county board and a school board member. There was also an active organization promoting the idea of sending black Americans back to Africa.
Integration was the overarching topic bedeviling Virginia, and the nation. Some Virginia school systems closed public schools, and new private all-white schools blossomed, leaving black children without education. Arlington County was considerably more liberal than most parts of Virginia and schools stayed open. At W-L and
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Other schools, there was tension in the air. Some students formed a Nazi party secretly meeting in school. Outside school, a wariness was palpable.
Local efforts in Arlington began to smooth the way to a transition to integrated schools. One of the first was an interracial dinner including high school students. I was one of the participants. It was an evening set up to test whether the state would stop "race mixing," as it was called by segregationists. The dinner was held in a large hall at the Unitarian Church in Arlington.
Reporters representing newspapers and television stations all over the country were present. Everybody was on edge, except perhaps the students selected from all the schools in the county. My colleagues and I ate dinner, chatted among ourselves, and answered questions asked by the reporters as we filed out. There had been no attempt to stop the event.
Shirley Elder, the Sun reporter assigned to the event, came to me and asked me to write the story of the event for the next day's paper. I was elated and went back to the empty newsroom and struggled with words for an hour or more. I confronted what all journalists bump against when an event is without explosive drama, but is historic at the same time. The next day my story was on the front page as I had written it.
Joyce is a sensitive woman with an artistic gift of color and form. She studied long and worked hard. No one could have prepared for the struggle I have presented her. In the wake of the death of her parents over the last decade, I slapped her with a large emotional hurdle, my slow, wretched death by Alzheimer's.
I cannot know her pain except as she has allowed me to see it. She does not come from a family of volubility and openness but
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THOMAS DeBAGGIO
thirty-seven years of marriage during which I withheld none of my pain and hunger may have changed her.
It is not easy to expose what has been secret or unsaid. In a place like America where emotion is often denied and strength is measured by how much is withheld, it is much more difficult to shed tears in words for the world to read. My story is also her story in many ways and her story is mine. Each of our stories may cover the same terrain but they will be indulged and viewed from different points of view. Even the way the world thinks about our roles differs; she is the suffering wife, I am the dying husband.
I hope we can throw the storyline away, strip the protective cover, and tell how we hurt individually from this small, private human catastrophe.
Joyce seemed to absorb the bad news of my illness and life went on with little change. As always when the holidays approached, she took a leave of absence from her studio. Before long, however, her sense of organization eroded. Things she began were all left lying. Every once in a while her former self peeked from beneath her shrouded face.
Then she began staying up later at night; sometimes all night. She has always been a late riser and she pokes fun at my early-to-bed habit, but there were days when she was still in bed at 2 p.m. I rationalized the change—she went to bed at 7 a.m. and she was deserving of seven hours' sleep.
Slowly motivation became almost nonexistent. She spent hours reading the newspapers and watching television, and then berated herself for getting nothing accomplished. She wanted to take time from her studio at the Torpedo Factory Art Center in Alexandria to paint the bedroom. All we managed was ordering new furniture for the bedroom. She wanted to help me have time to write and make my life easier, but she wasn't dressed in time to make dinner. That, too, continued the self-deprecation. It made me cry to watch her struggle with the silent demons of her depression.
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Finally she sought medical help and after a few tries with different drugs, her depression began to abate and her smile returned. She accepts surprise with a grin now.
Going to college was something my parents had done and it was expected of me too. I didn't care where I went as long as it was far away from home. I settled on the University of Arizona, nearly a continent away.
I got on the airplane and flew to Tucson clutching mv bible, J.D. Salinger's Catcher in the Rye. This best-seller about youths in New York opened my eyes about the world and its ways. Almost the minute the plane landed, I began looking for "phonies** and easily spotted them tangled in their insecurities.
Inside the terminal I spotted two boys my age and walked over and introduced myself. They were waiting for the bus to the university. Both of them were New Yorkers. Finally, the three of us hired a taxi and were delivered to the campus.
The campus was a new world, filled with tall, upright buildings. The Arizona heat was another surprise. Cars parked on campus, many of them new, were covered with parachute cloth to protect the finish from the brutal sun. The earth was a dry inferno and it made me sweat less. I stood on the sidewalk and looked at the building soon to become my domicile, and wanted to go home. The hot, dry sun saved me fro
m showing my tears.
In those days the United States was inching its way into Vietnam and protests were beginning. ROTC was mandatory at the university and I simply boyconed it. In class and in the cafeteria I continued to mentally identify phonies.
Before long I was skipping classes. My final fling was a day spent wandering with Bob Hurwitt, one of the chums I met that first day at the airport. We filled backpacks with food and wine and hitched a ride to the rough, hard mountains outside Tucson. The cheese mehed and the sharp stones made our sneakers almost useless.
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The idea was to walk back to school by a scenic route. As night fell, Bob and I were high among the rocks in an unfamiliar sharp wilderness. In the distance a light winked and we stumbled toward it. Approaching a brightly lit ranch we were greeted by an angry man with an ugly carbine. He thought we were chicken thieves.
He pointed the way back to the highway and Bob and I began a long trek down the driveway filled with sharp, high, dry grass. Under the light of a bright moon, we passed a car parked along the side of the drive, windows fogged with passion. We walked a long time before car lights illuminated our backs. The couple, students at the university, picked us up and we returned to campus.
Within a few days I climbed on a cross-country Greyhound headed for home. Bob and I found a common bond in words and literature, a link that has kept our friendship alive to this day, even though we dwell on opposite coasts.
I awake in the dark morning without awareness of what day of the week it is. I wait for the newspaper or the radio to locate me in time. The day of the week, the hour of the day has little meaning for me even when I remember. I float in my own chaotic world, grateful to know I am still alive.
There are moments when I no longer remember routine chores, but my mind has not lost all my familiar motions.
I make an effort and suddenly what I could not remember begins to take shape in fits and starts. Memory comes to my rescue.
It has been several months since I made a bank deposit, a chore I accomplished with ease as recently as June, and it is only January. Thinking about the process, trying to resurrect the memory of how this simple task is done with paper and pen, eluded me. Flashes of anger and frustration exploded in my head. I remembered clearly having done the familiar business chore but I was now having trouble understanding it.
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It wasn't until I held the deposit slip in mv hand and felt mv familiar pen that I began to slowly unravel the mystery of this once-simple task. The struggle to bring meaning out of inanimate objects and to remember simple, familiar tasks is now on another level.
Throughout our lives we control nature's human urges—anger, slothfulness, murder, revenge, wars, all the dangers that trouble our societies. We honor life in the face of certain death. In our own familiarity, we seek grandeur and strength. Yet there is no real nobility in the face of death whether it comes with a startle or a grimace. It is always a dirty mess. The reason we erect stone markers to the dead is to remind us of our frailty and animal cunning. Sleep, sweet beast.
Without college to protect me, I had to find a job and landed at U.S. News and World Report, then under the control of David Lawrence, an aging shepherd of the right wing. Mike Boggs, then a copybov and friend from high school, helped me get the job. Pav was meager. $40 a week, and I was paid in cash stuffed in a litde yellow envelope. I lived at home and needed little, so I threw the unopened pay envelopes in the bottom drawer of the dresser.
Copy boys ran errands around the big newsroom and the offices surrounding it. There were usually at least two copvbovs and we performed an hourly run, shuffling paper back and fonh among offices. There was always a lot of time off and we read books and chatted politics. It was in the days just before and after Fidel Castro overthrew the dictatorship in Cuba and there was a lot of talk about it. One morning Mike and I discussed a Fair Play for Cuba Com-minee advertisement in the New York Times. The woman who shuffled paperwork to copyboys overheard the conversation.
**Don't get involved with those commies," she warned. "You'll never get another job. Somebody in the FBI will have a membership list within a week.''
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I bicycled to work and wore pants so old the front pockets were gone. Lunch was spread on the nearby grass green park with the young women who worked in the business office on the first floor. I was eighteen, legal drinking age then, and for a while I kept a bottle of Chianti in the copyboy's desk to prove my manhood and to refresh the bag lunch my mother made.
Once a week, as production night drew near, I stayed late. It was a long day but I got dinner free across the street at the company cafeteria. When Mike left to go to school in Mexico, I became head copyboy and had to stay after midnight. On those nights I was allowed to take a cab home at company expense.
I enjoyed the copy editors. They sat in a big circle in the middle of the room editing the news stories, written by rewrite men, a few correspondents, and editors in offices that wrapped the edge of the room. Each of these grizzled editors was a "pop-out" individualist. The head of the copydesk, a middle-aged man, threw paper clips at women's behinds all day long. Another copy editor chewed paper clips; another hummed continuously. The guy who sat closest to the copyboys flipped pencils into the air and caught them without looking while reading copy.
My mind is so fertile and alive this morning I am almost afraid to take my three-mile walk. If I am caught in the midst of a lovely brainstorm of words and ideas, I may be unable to catch the idea or thought before it disappears. I postponed my walk to better enjoy the explosions of words awakening my brain on this bright winter morning.
I am more aware of the world now, the tiny insignificant things especially. I am beginning to be more childlike. For an artist this may have some advantages. As a fifty-eight-year-old man it has many drawbacks. I am losing precious memory and complex ideas become twisted. I am becoming a child again against my will.
I am so sick of hearing about technology lean wait to lose my
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mind. Technology is nothing without humanity and we will lose everything if we forget that.
Noah Adams of National Public Radio sent me mail from his offices after the first broadcast of the family interview. There were two letters with interesting stories from individuals with experience of Alzheimer's.
Pamela Stewart, of Oxford, Iowa, lost her husband to Alzheimer's and remembered it in a poem to me. Her husband died two years ago, she wrote, ten years after onset.
"I wrote a lot of poetry during that time," she recounted. "It helped me and I have shared some of the poems with friends who are dealing with the same problem. Hence the poem which took shape in my mind as I listened and committed to paper when I got home."
ALZHEIMER'S REVISITED
Today I heard the voice of a 58-year-old man, as he spoke of losing his memory, word by word, thought by thought. He said, ''The only thing I never forget is that I have Aliheimer*s disease. '*
As he spoke of exercising his mind, I pictured, once again, my husband sitting at his desk, writing his name, over and over, letters missing, writing fading into a meaningless scrawl. Then a group of near-perfect signatures. Strong will and determination to not let go, beaten by the inevitable progress of a mind-stealing illness.
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THOMAS DeBAGGIO
At that moment I wanted to reach out
and tell this family that I too could
never forget that I loved one
who hadAliheimer's disease.
I wanted to tell them, too,
that times of pure love and closeness
will be theirs to savor and enjoy.
The simple accomplishments
are like a mountain climbed.
A victory against all odds.
That the act of unlearning
is like a book read backwards.
The words and stories there
to b
e unscrambled, interpreted,
and imprinted on the minds of others.
Another letter, from a woman in Issaquah, Washington, told a story of a friend:
FROM WHAT I HAVE OBSERVED of the disease, each person is affected differently, so I do not intend to generalize from what happened to my elderly friend Emily, but with her, when the words and memories dropped away, her essence became more pronounced and delightful...
Because Alzheimer's became too difficult to deal with, her husband finally placed her in a small nursing home in 1983. The time of adjustment was difficult, but once she felt secure in the routine of the home, her intelligence and caring continued to manifest itself, even though she was in her late 8o's and had no memory to speak of.
One of the funniest episodes I remember was the time I picked up books from a small distribution company whose location was on the hillside above the nursing
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home. The owner was laughing about something he saw that morning—a Uttle old lady in a pink dress was making her way craftily across the flat roof of the nursing home, when suddenly a white-coated orderly threw open the door to the roof and ran frantically after her.
When I finished my business at the distribution company, I stopped at the nursing home. "Sharon," I said to the head nurse, "I hear you had a patient on the roof."
Startled, she said, "Don't tell Mr. Braman." And I realized the little old lady in pink was my friend Emily who had seen a workman go up on the roof the day before and remembered and calculated the route to the freedom she loved more than just about anything.
By the time I reached twenty, I was tough to love as a son. I had given up Catholicism, one of the pillars of my father's life. I had forgone college, one of the keys to getting ahead in life for my parents. When I had a job it was humble, and with little redeeming social value. Could the kid be saved.^ So what does the old man do.'^ He takes the whole family on a grand tour of Europe, from Italy to France with stops in Switzerland and Austria.
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