In the past, I was a man who did not move in his sleep. Lately I toss and turn on a disheveled bed. Night after night strange dreams inhabit my sleep, nights of lost wandering, terror, fear, and mysterious occurrences. These are dreams of confusion, deep, dreadful dreams I categorize as Alzheimer's experiences. In them the man I see is walking, wandering aimlessly, lost and fearful. I wake up screaming, fearing loss of control, hiccupping with fear, breathless with emotion. I feel myself dying night by night, as I mark off strange wads of wandering scattered in resistant sleep. My mind jumps as if a computer screen scrolled out of control. I am lost and afraid, headed for a hell imagined by a dyspeptic surrealist.
It's the lights again, always at night, the colored lights rolling in front of me too innocent to wonder. When I close my eyes, I am afraid the colors will roll before me. I am lost in nightmare, afraid to sleep, too tired to remember who I am. There is ugliness more but I
THOMAS DeBAGGIO
am going to keep that secret by forgetting. Hide by the tree with me. Watch the Uttle boy on the swing.
I can remember the skeleton but not the fleshy record that made it a man.
Memory has been abundant in the human family and even in other animals. I took it for granted until recently, as my recall began to sag and it became clear Alzheimer's was a dog nipping my toes. As disease subtly steals these sweet nuggets of the past, an unknown loneliness has taken hold. Where the past once bubbled with memories, it now has long breaks punctuated with nightmares instead of pleasant dreams. My past is disappearing, removed forever, a painful little pit of me lost forever. As I write, I must rely on notes taken a year ago as this project began. I am reminded now how sweet is memory, how comforting and important.
Memory is in the present, one minute at a time, and that is disappearing at an alarming rate. I am truly living in the present. My memory of yesterday is obliterated as I lived it; there is hardly a light to illuminate the long tunnel of yesterday. Most of my memory is obliterated the instant it is created.
Loneliness becomes physical, an ocean without foam or movement, a stagnant puddle. This loneliness creates a silence you can hear. The only way I have to preserve my memory now is to write. This book becomes my memory, the only record I have of these empty, dead days.
Life in me gradually seeps away as Alzheimer's gains control of my mind and body, chipping where I cannot watch. I am not yet a vegetable waiting to rot but I can feel the aura of death in the white hairs of my head and in every pore of my body.
There is a time in every life when this moment occurs—sometimes slowly, at other occasions almost instantly—and it creates an unsteady moment of revelation. This is the first time I have truly
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fJKxd die kka of deadi. Pievkiiisly I ha^e had fleedng knoiHed^ have watched parents and grandparents age and stmnUe into unrewarded doi^e. The inost mtmiate I have been with death was watching Joyce's modier slowiy deterioratB who nodm^^ness, dimming to the bone, eadi day becoming weaker. Even that did not pr qare me. Even the waitii^ for her last breath as she by he^Jess and silent on her bed in a darkened room. I heard no screamii^ words^ no con^laints or gur^es; the ordinary continued without my awareness of die in-temal doubt and trembni^ It was not until several days afar I forgot ^idiere I was headed ^liuk driving the car and became unreasonably emotional and agiiaipH that H«itTi^ nnr ""^tf"^ begjan to Uve in me.
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The woods above the meadow were fine cover and a place of secrets. The privacy of the tall, clustered trees created a secretive worid. It was an ideal place to interview individuals fri^wpned for their lives by kno^idedge they had.
One afteriKxm I took a walk in die woods with a woman I ''^ --—. We walked die rutted ydlow day path together as the dap-: = 1 .:^t slid throu^ the leafy tree branches. She told me secrets about an underworid of threats and violence^ peopled by men in places of security and honor, including the police department.
"Doris* b^^n her douMe life the day she realized too many of "^' '"'ends had fdlen victims to the needle's euphoria. One night, .r before a large heroin shipment was due, she phoned a police captain, her main contact. She told him about the drug shipment. "Keep in touch," he said. "I can't do anything now. I'll wait for x)u to call me with more uiformation." £>oris went to the delivery site and copied license numbers on cars outside the drug house. She telephoned her captain, but there was no answer. An official state car was involved in carrying the drugs, she saicL
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The more Doris saw, the more she came to believe a complex web held everything together. The whores, the pimps, the gamblers, the numbers writers, the rogue cops, the bootleggers, some politicians, government officials, and businessmen were all interconnected.
Before her story was published, she went into hiding in another state. I saw her once more. This time the underworld she worked was a spiritual one.
There are secrets in every town. Those who know the secrets are few and they risk much, sometimes their lives, by sharing them with others.
Memory is a tricky, sometimes fickle, organ. Jane E. Brody of the New York Times in her "Personal Health" column of April 25, 2000, shed light on false memory enhancement, and its consequences.
"There is no question that the memory of traumatic events can sometimes become repressed," she wrote. "But there is also no question that many so-called recovered memories, particularly those involving allegations of childhood sexual abuse by a parent or other close relative, teacher or friend, are often fictions induced by the concerted efforts of a therapist who fosters a belief that becomes so deeply held it seems like a real memory."
"We don't know what percent of these recovered memories are real and what percent are pseudo-memories," said Dr. Harold Lief, a psychiatrist.
"A young woman in psychotherapy recovered the memory that at age 13 she was raped by her teacher, became pregnant and underwent an abortion," Brody wrote. "In fact, the woman had not reached puberty until 15, so the pregnancy was medically impossible."
"By asking a series of leading questions and by having a supposed 'witness' talk about the made-up experience," wrote Brody, "it is often possible to convince someone that the event actually happened. In one study, researchers easily convinced half the adult patients that they had been hospitalized in severe pain as children or
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that they had been lost in a shopping mall at age 5. Several people with these false memories provided detailed embellishments."
A study at Cornell University showed how easily children can be convinced fiction is reality. "Preschool children were asked weekly about whether a fictitious event had ever happened to them," Brody wrote. "By the loth week, more than half reported it had happened and provided cogent details about it. In one experiment, interviewers told the children: 'Think real hard. Did you get your hand caught in a mousetrap and go to the hospital to get itoff.^'"
Dr. Stephen J. Ceci reported: "So compelling did the children's narrative appear that we suspect that some of the children had come to truly believe they had experienced the fictitious events. Neither parents nor researchers were able to convince 27 percent of the children that the events never happened."
Not long ago my mind was quick and sharp. Now it is a game of hide and seek. I feel something in my mind waiting on the edge of consciousness but it does not materialize; it hides from disclosure. My life is plump with moments of twisted awareness, moments when memory dies. Time has turned into a premonition instead of reality. Alzheimer's has given new meaning to the idea of having your head in the clouds.
Wilmington was more than Rodney Square and DuPont Castles in the leafy suburbs. There was the East Side, the place to escape, ringed by industry and filled with grief and struggle for life. Its lonely streets of fear were peopled with brazen, outspoken men like Tobe, Balagun, and Bill Young, saints if given a chance. But this was the place of original sin, a home where humans struggled to be good and surviv
e with honor and were tricked into evil. Life here was short and unhappy, often ending with a bullet or an overdose. Those still luckily alive were often drafted into prison. This side of Wilmington was flooded with tears and anger.
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The cancer holding the East Side hostage leaked everywhere and one day Joyce and I found it oozing into our house. Joyce went to an anti-war meeting at a friend's house. I was with little Francesco when the phone rang.
"Do you know where Joyce is.'^" the caller asked.
It was a strange way to start a conversation with a stranger. I had been wondering whether we were being watched; now I was certain. Was the telephone tapped as well.'*
"She's gone to a meeting," I said.
"Just about now she is naked and in bed with a buck-naked nigger football player," he said. I hung up the phone. I felt strange, as if I had just been violated. I was surprised someone watched the comings and goings at our apartment. When I told Joyce of the incident, she was upset that anyone thought she could be interested in a football player.
The police state began in the wake of riots after Dr. King was assassinated and wide latitude was granted the police and the military. After nine months of practice in martial law, the police state was no longer a shadow in America; it was reality.
Joyce and I went to a meeting of the White People Coalition for Peace and Justice soon after we arrived in Delaware. It was here where we were enfolded in kindness, humanity, and sanity. We met Ruth, Vona, Harriet, and the earth-mother goddess of all, Ethel Snyder. It was here where a man was pointed out as an FBI informant. The FBI had a large presence in Wilmington and individuals were hired to bring them information.
Months later, I ran into that man at the grocery store. We chatted and the man asked me if I'd like to accompany him to a Ku Klux Klan rally in nearby Maryland. I immediately saw a story.
The Klan meeting was in a farmer's meadow. It was filled with white-sheeted, masked men and women. I stood back and watched as the man I knew as an FBI informant worked the crowds, getting whatever information interested J. Edgar Hoover. I may have ended up being the only name he could give up.
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Years later I obtained my FBI file and my attendance at the Klan rally was duly noted. The name of the informant was blacked out on the paper, but not in my memory. It must have been difficult for the FBI to understand what a leftist journalist was doing at a Klan meeting. It was all grist for the police state. Whatever it cost to report on the whereabouts of Joyce and me, it was a waste of taxpayer money and a violation of our civil rights.
Although my memory is crumbling into obscurity, lam a memory for someone, living again in their recollection.
Once my days were bright with ideas and dreams, a butterfly of words dancing in the sun of certainty. Now a dull emptiness wraps its arms around me in a suffocating embrace. The words in my brain are silent, and the flood of sentences begins only when my pen unleashes a flood of writing memory. After so many years coddling words, it is now I realise writing carries the blood of memory.
As thoughts and ideas evaporate, sometimes more quickly than I can catch them, my enjoyment of life is shredded. This is a small part of what lies ahead.
When the brain loses its controls, memory sags and the simple becomes complex. I took it for granted; it never occurred to me how important the thing on top of my shoulders was. In the last year, I gained new respect for the brain and its twenty-four-hour work. It may be the hardest working thing on earth, the brain, and it comes free with designer colors on the package.
I never realized how important the brain was to the enjoyment of life. It is not just about remembering things; it is about where things are and how they work. It is about the retrieval of knowledge; it guides speaking, sleeping, and rolling in the grass. And Alzheimer's can quickly destroy the beauty of the brain and the world it interprets.
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What I don't know is trapped in a convulsive time of stumbling and future loss. I look at a future of sadness and dependency. I continue to lose capability and before long this brain, racing to self-destruction, will cripple me to the point I will be unable to do the things a three-year-old does with gusto. When I can't cope, who will care for me as I slump into the shadows.'^
Shovel the old guy into the ashcan. Make way for the next generation. We'll need a big dumpster.
Aliheimer's is like trying to describe air. You know it is there but you cannot feel it or see it until the storm comes and the wind blows the tired, dead leaves to the ground to rot.
There were great, dusky parties in Wilmington full of loud music and chatter with friends. It was a chance for me to watch some of the people in public office with their hair down. I had always been an observer, not a dancer, a self-conscious nerd without rhythm, and tightly tuned.
During one party I got pushed on the dance floor and in a free-form manner began to dance with a woman who vibrated with sexuality. One of my friends came up and tried to push me away with a warning. Be careful of the energetic black beauty with long, smooth legs in the tight dress, he whispered.
The high school dance classes years before at Don Palini's on Washington Boulevard did not prepare me for what was in store. The woman pressed close and we danced in dizzying abandon, her knee massaging my crotch. I allowed myself to revel in the danger and the hope as she pressed herself against me. It hardened me against dancing's most basic embarrassments.
I am lonely in my dead life. Even when I am with people and laughing with them, I am alone, isolated from the normal world, unable to remember this morning, constantly trying to recapture the moment just past. I live in a strange place of isolation, and now after
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years of rumination I have been cast into a place where remembering is slippery unless it happened several years ago. I feel separated from the world most of the time and I have become comfortable to sit in a room with people conversing and listen silently.
Joyce, on the other hand, has to deal with me and my slow death. She keeps her sanity by staying up late into the night with only the sound of her breathing to break the silence. She goes to bed at 4 a.m., about the same time I arise. She explains her unusual behavior as necessary to get things done. I look around and everything appears to be where it was when I last saw it. I look hard to see where the night hours have bent the world into new shapes and cleanliness. While I try to cling to the few memories left me and pine for a slow pace and simple, familiar things, Joyce is bent on creating a new world of objects to replace the one dying inside us. We have different dream worlds but we are both trying to find a place to heal.
I do not think about suicide and dying, though Alzheimer's distracts me. This is no friend, this disease, but it has taught me much about time and the world. It is difficult to create a new world without creating piles of debris.
I have grown to enjoy the surprises of everyday life and self-discovery it brings. I cling to dirt and watch marvels rise from it. I watch the robin high up in the unused greenhouse, patiendy warming her five blue eggs in the fuzz of her feathers. I wait as anxiously as she to see new life. Dreams do not die even in the face of death.
There is death working away in my body. I live there in the company of fears.
Eventually Joyce, Francesco, and I came back to Virginia where I continued to write and help edit the Delaware Spectator, a weekly tabloid published by Ralph Morris. Every Tuesday in the early-morning darkness, Joyce drove me to Union Station in Washington and sent me off with a kiss to Wilmington where Trader or another of Ralph's assistants picked me up. The days went long into the
THOMAS DeBAGGIO
night and when they ended, I went to Ralph's home to eat and relax. There seemed to be food available at the Morris house anytime of the day or night.
Ralph had a family so large I wondered how he and his wife, Dorina, kept track of them all. There were so many that I could barely fit in the house. I would go next door where Ral
ph's brother lived and sleep there.
Ralph was a great boss for a small newspaper. Not only did he have impeccable sources, he supplied encouragement when you were down. The only way I knew he was having financial troubles was when he paid me with a check and said, "Be sure to cash it before you go home." He had much sorrow, which he kept to himself, but we had a great time fighting the establishment.
Joe Brooks was one of the sterling characters Ralph found for the paper. Joe was the circulation manager. He had a glorious checkered past, which he used to hilarious account. He was a ladies' man with a wooden leg and a lover of gospel music.
Soon after I began writing "Peep's Diary," an expose column, Joe ran into serious trouble. I had written something in "Peep's" unflattering to cops. A highly placed officer threatened Joe. He wanted to know who wrote "Peep's Diary." It was no secret but the officer reminded Joe that one more driving citation would revoke his license, leaving him with no way to get around. It was unnecessary but emblematic of the way things were done in Wilmington.
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When ability to remember is haphazard, pill-taking becomes tricky, even dangerous, as I learned the hard way.
Monday night, I made dinner, cheating as I often do, cooking prepared food. I took an Exelon tablet with the meal, as directed by my doctor. Joyce came home from work and started working in her
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flower garden, intending to eat later. She came in after dark and had something to eat.
When she saw I was ready for bed, she asked if I had taken my pills, as she does every night. In that short time, I forgot that I had taken the Exelon at dinner. I took another, then went upstairs and popped an Aricept into my mouth and went to bed.
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