A tip came my way from the local head of the NAACP. A restaurant in town was notorious for barring blacks, I was told. An attempt to eat there was going to be made by the local members of the NAACP. It was time Joyce and I ate out and we went to dinner at the restaurant in question. A short time after we sat down, two black couples I recognized walked in and were seated near me. There was great relief when they started to eat. It was the first time I was happy not to write a story.
One day a reporter came in and told me some scuttlebutt at the barber shop was spreading a rumor I was a communist. The postman tipped them; I received a suspicious, large package in the mail every day. I laughed. The large packages were the Congressional Record, the official document of the U.S. Congress.
For all my faults, I began to enjoy my work, but it was not long before the routine chafed my creativity. I tired of making the rounds to the police department, the sheriff's office, and the fire department. But quirky stories always turned up to explain the town in new ways. I loved these tales for their humanity and they hung in my memory. One morning the police blotter noted a theft at a gas
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Station. The money was left, but the toilet was stolen. Another day, firemen wondered how a man and a woman, in broad daylight, used the telephone booth in front of the firehouse for a toilet.
It is hard to be embarrassed when you can't remember who you are, what you said, or where you are going.
Almost every minute of the day is distorted by the struggle to reclaim lost words and the frustrating search to communicate. It is a battle with little purpose. No matter how hard I try, this is one battle I will not win without a miracle.
There are days when I become lost in the destructive power of Aliheimer's.
As I lay awake this morning in 4 a.m. darkness, I was treated to a light show. A series of yellow images with edges torn in irregular patterns began to flash slowly before me as I stared at the wall opposite me. They danced before my eyes as if they were projected on the wall but there was no source of light for them. They could only be generated in my mind but they were as real as if Picasso was squirting the wall with random objects painted in yellow. I lay there alone and insignificant and for several minutes the yellow-lit objects snapped on and off in different places on the wall.
My first thought was that these images were reflections of the fires burning in the holocaust of my brain. It was no mysterious apparition, according to my doctor. It was just another manifestation of Alzheimer's, a warning light on the way to loneliness and hell.
The time must come to all of us, who live long, when memory is more important than prospect.
- VISCOUNT GREY OF FALLODON, 193O, IN FLY FISHING
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Familiar habits peel away and are lost from memory. Everything is becoming new with an aspect of unfamiliarity. There is the confusion of the object seen for the first time. I am in an unfamiliar world but I stand still.
I rattle my cage but no one comes to feed me.
For the last fifteen years, I have walked the same three miles every morning. When I began, the landscape was familiar. In the last few years, major changes have taken place and now the feeling of a small town is gone and in its place are twenty-story high-rise buildings for living and work. My little world is becoming crowded as these new structures shoulder their way down the streets toward me. I walk through the streets now remembering when I was a boy building model railroads and playing ball in the middle of 9th Street. I wonder where the sun has gone and what has happened to the world I knew.
As I walked yesterday in fresh, early morning, a woman pushing a stroller with a little girl in it passed me on the right. I am a fast walker and I am usually the one passing people. I watched the woman pushing the stroller pull away from me, bending her body forward to lower her profile. I stopped for a moment to look at the progress of a new office building and when I turned back to the sidewalk, the woman pushing the stroller was gone. I looked around when I got to the place she had been but there was nothing there but her hurried memory. Had she ever been there.^ I was uncertain whether I really saw her.
A call came to the Peru Daily Tribune from the Wilmington News-Journal m Delaware. The company was searching for journalists with experience on small papers who were ready to move to larger organizations. I was surprised my editor in Peru told me of the opportunity, but I quickly understood it was a subtle invitation to move.
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I knew nothing of the searing riots and mass arrests in Wilmington after Dr. Martin Luther King's assassination, nor did I know about the city's struggle under martial law and curfews for nine months.
I planned to fly on the News-JournaV's, ticket, but missed the plane and drove through the night to Delaware. I arrived in time for the interview. Upon returning to Indiana, I got a call telling me I had the job. The packing began immediately.
Soon I was sitting at a desk in the News-JournaFs scruffy newsroom. I was filled with first-day jitters and tingling excitement. My first job was writing obituaries of local soldiers killed in the Vietnam War. The routine work bored me. Making phone calls to the families of the dead soldiers was emotionally difficult but I worked up a spiel to make it easier, something about writing a tribute to a fallen son or husband.
Soon I realized I had just traded a job with a set routine and familiar faces for work that was empty one minute and boring the next. What I liked least was the lack of control over my choice of work. I learned to accept as punishment interviews with strange people standing in vest-pocket parks at 2 a.m.
The stories I most enjoyed reporting were those I sought myself. These were in poor parts of town where there was hunger, anger, and discrimination. It wasn't long before I hunted my own stories and worked on them at home. I polished one on the University of Delaware's involvement in the Vietnam War. When I saw it later, it had been edited with notations in different colored inks. The DuPont family owned the newspaper through a holding company and board members were given opportunities to shape stories to protect their interests; the color of ink secretly identified each commentator.
When I left after 180 frustrating days on the job, the newspaper's editor, Dixie Sanger, had me in for a quiet talk. He asked me not to "slam the door too hard" when I left. Of course I didn't listen to talk like that. After walking out of his office I immediately wrote
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an article for an antipoverty organization about my experience. I called it "i8o Days in a House of 111 Repute." Subtlety has never been my forte.
Almost every minute of the day is destroyed by the struggle to reclaim lost words in my search to communicate. It is a losing battle, but I will sing until no word is left. Alzheimer's is making me mute.
I sometimes stumble through my shrinking vocabulary, lost in a world of detached alphabet, unsure and waiting for the next smirk of evil. I know where this leads, even through the blurred vision of tears.
When you shut your eyes, the world goes black. That was the way it was for me until recently. Now it is black when I shut my eyes during the day, but at night there is a change. Instead of black, a panoply of colors, with a subtle sparkle, rolls before my eyes. Gradually the speed of the roll slows and I am quickly asleep in minutes. This is one of the pleasant aspects of sharing a bed with Alzheimer's.
What am I doing here?
I launched yet another ill-starred newspaper, a monthly called the Wilmington Independent. For an office, I used a spare room in the apartment; what little money Joyce and I saved funded it. Little equipment was needed: a typewriter, some glue, and knowledge of newspaper layout. There were many newspapers printing tabloids for others then, and now.
One of the first stories I came across was the treatment of inmates in Delaware prisons. I had many sources inside and outside prison and word got back to me of mistreatment. One of the most notorious punishments was tying nearly naked prisoners to steel beds and leaving them there for
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I lacked entree but I learned the Delaware Human Relations Commission planned a visit to the prison. I hitched a ride with the head of the Commission, who was worried about prison conditions. The two-person Commission had free run of the facility and talked to many inmates.
Delaware had a long history of mistreatment of prisoners and there was great debate, as late as the 1960s, about bringing back the whipping post. Delaware was the last state to use this medieval torture and there was still serious debate about reinstating the punishment.
The story I wrote for my newspaper did not please the penal community, at least those not behind the bars. As I discovered later, it was responsible for keeping me out of prison. Two years later, while working as an editor for the Delaware Spectator, a weekly published by an antipoverty group, I attempted to interview prisoners in the correctional center in Syrma, Delaware. It was then I learned I had been barred from entry to any Delaware prison because of the earlier article.
Sometimes a telephone call could ignite a story for the Independent. This one was from a salesperson cold-calling potential buyers of oceanfront property for Ocean Pines, a Boise Cascade Company. I asked an innocent question: did the company permit blacks.'^ "No," the caller said.
I jumped at the story. I knew such exclusion was illegal. Of course, I wanted a rep to visit me. When she arrived the next evening, I pressed her about the company's failure to maintain equal housing when its brochure said it was a "fair housing community." She said it was a lie. Loss of employment was the penalty for salespeople who invited black couples to purchase property. If any salesperson let them through, a method was concocted to bar their entry through a system of disqualifying checks.
Within a few weeks of publication of the story, a Washington lawyer called me. He told me he represented a black Delaware cou-
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pie going before a hearing judge in Washington, DC. They had been selected out by Boise Cascade. The lawyer wanted me to testify. I went to Washington, waited outside the hearing room, but when my time to testify came, lunch was called. The hearing never resumed; Boise Cascade, with powerful influence in Washington, decided to settle, a clever way for powerful, well-connected firms to hide their misdeeds.
I managed to ruffle many feathers with the Independent, but lacked the money for the long haul necessary to maintain a muckraking newspaper in a company town like Wilmington.
lam amazed when I can rememher something that happened an hour ago.
^-.
My Alzheimer's is still subtle and not yet crippling. Yet I can feel the desire to drop my pants and masturbate in public and indulge in other behavior typical of diminished inhibition. And this is happening at the same time my sexual drive has begun to stall. Obviously, in many ways, I am regressing toward a childhood I never knew.
Aliheimer*s is catching, often passed from parent to child through faulty genes.
Dreaming is something that disappeared from my nightlife some years ago, perhaps with the surreptitious start of Alzheimer's destruction. I have recently had presleep moments of rolling color before my eyes and hallucinations, but last night topped them all.
It began halfway through my night's sleep. I was gripped with fearsome emotion. I ran in the dark of my dream trying to hide, from what I did not know. I ran in fear from what, the fear that
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haunts us all in night sweat. I was lost. I knocked on doors and I tapped on windows. No one helped me. I was terrified.
I awoke suddenly, shaking from the nightmare. Joyce tried to calm me. She had heard me screaming in my sleep and came into the room to see what was happening.
I am lost. I am lost. It was a wretched litany. My breath came like that of a frightened child, afraid of the dark and wary of a world not understood.
With Joyce's arms around me for comfort, I began mumbling, "I am home. I am home." I needed assurance I was no longer in the terrible dream in a broken world out of order, licked by chaos. I continued to murmur rhythmically, "I'm home, I'm home," like a litde child.
I have never had such a frightening experience, except, perhaps, that night when my parents slipped out, leaving the apartment door open, to sit and talk with their friends across the hall, and I awoke with fear and loneliness in my crib.
In my sleep, did my beleaguered memory cause me to relive the moment long ago when a two-year-old screamed until his parents returned to the sound of his abandonment.'^
Joyce and I made friends everywhere we went in Wilmington. We looked for people like ourselves, "peaceniks" and civil rights activists. Through them, and a circle of Quakers, I discovered on the city's edge the still, quiet woods overlooking a green meadow beside a little brook. It was here that a breakaway group of Quakers met every Sunday morning. Joyce and I knew little about Quaker services, but we were friends with several of the members of the group and we were invited to participate. It was here that we felt the calm life force inhabiting Ethel Snyder, a woman as close to sainthood as I had ever met.
The Sunday meetings in the meadow were built on Quaker practice with some outdoor refinements. Everybody sat in a circle on the grass and held hands, happy in their humanity and the rich silence inhabiting the group. After a while, in Quaker style, a member
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of the circle talked into the silence. Soon another voice spoke. They expressed deep-earth thoughts, not prayers.
Afterward the kids played and there was fine socializing. It was something Joyce and I never experienced again and it left a mark on us that we still carry.
I had a wonderful lunch on the Alzheimer's Association, local chapter, today. They have a plan to make me into a poster boy and I am willing to let them use me. Anything to bring attention and money to help end this scourge is all right with me. I squirm at having a spotlight shine on me, but it is just a means to something greater, helping other people whose lives are also twisted in the torturous claws of Alzheimer's.
After I got home from the lunch, I had an idea and called the local chapter. As the receptionist answered, my mind went blank and I couldn't remember why I called or the name of the person I wanted to talk to. I sputtered and the receptionist giggled hysterically, thinking, perhaps, I was playing a joke.
I was breathlessly angry with myself. I have made it standard procedure lately to outline on paper what I want to say before I make a call so this does not happen. I became overconfident and made a fool of myself. By the time I hung up, I remembered why I called and dialed back without incident.
As new drugs to treat and even prevent Alzheimer's disease make their way through the pipeline, a basic medical issue has remained unresolved: how can doctors know which patient to medicate if they are not yet showing clear-cut symptoms.'^
Now researchers believe they may find an answer in the magnetic resonance imaging machines. The findings are reported in a new study paid for by the National Institute on Aging; it appears in the Annals of Neurology.
The scientists found some regions of the brain change size in patients in the early stages of Alzheimer's. When this happens, the
THOMAS DeBAGGIO
warning signs are visible on an MRI. This may one day allow doctors to identify patients in early stages of Alzheimer's who could benefit from drugs as they become available. But, the lead researcher, Dr. Marilyn S. Albert of Massachusetts General Hospital, cautioned that the technique needed much refinement.
"It's not there yet," she said, "and I don't want to mislead people."
The researchers—who are also from Brigham and Women's Hospital and from Harvard, Brandeis, and Boston Universities— were able to confirm earlier studies that found significant neuron loss in some parts of the brain during early Alzheimer's.
Over three years, the researchers studied 119 people with an average age in the early 70s, some healthy and others with mild memory problems. As subjects developed the disease, the researchers went back and reviewed their
earlier MRIs.
In every case, they reported the MRI distinguished between healthy participants and those with mild Alzheimer's. Scans of the entorhinal cortex could detect a difference between healthy people and memory-impaired patients who went on to develop the disease.
One time in the good old days, my lawyer father told me he had been selected, along with many other men and women working in the government, to hide in secret concrete bunkers deep in Virginia's Blue Ridge Mountains and run the country during a potential war with the Soviet Union. I never understood why a lawyer working for the Bureau of Narcotics was needed in an underground bunker but it must have had something to do with the high potency medicines that might be needed and were regulated by his office.
The thought of his leaving me, my sister, and my mother, perhaps never seeing us again, must have made him shake with fear and sorrow. At my age, living underground sounded like fun. Newspapers of the times were full of stories of families so fearful of the possibility of conflagration they built underground bunkers in their backyards and stocked them with canned foods, matches, and spirit
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lamps. Air raid siren tests made the possibility seem even more real. The fear generated was palpable, but my father never took up residency underground and the rest of the fear that was generated soon evaporated and was forgotten.
The childhood wounds healed, and my dreams were less haunted by fear. Imagination soon replaced anxiety and I learned early its lonely, lovely powers.
Instead of focusing on the explosive reality of their time, my parents created for me and my sister a happier personal interval of their own imagining. This created optimism in us and a gentle narrative of childhood tranquility. They showed me the beauty of the cornfields of Iowa and the serenity of a small town called Eldora.
Soon enough I was scarred and uplifted, as were they, by the time of my time, a world of conflagration, disorder, hope, ugliness, great beauty, and unnecessary death. The imaginative world of kindness and promise they passed to me remained untouched by the ugliness of congested cities, immoral wars, and encompassing greed.
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