The first day at the new school was hellish and full of hazing. On the way to and from Swanson during the first week, seventh grade students, boys and girls, were chased by older students who carried tubes of lipstick that was smeared on the faces of the new pupils.
It was easier to avoid getting smeared with red lipstick in the morning when students didn't arrive the same time. When school let out, everybody left at the same time and the older students were waiting with lipstick. I got smeared several times. We learned to run as fast as we could to avoid the older kids. As far as I could see, the hazing was condoned, to some extent, by the faculty and principal. It lasted about a week before normalcy returned.
In the time of my life, I have lived between poetry and prose, revolution and middle-class suffrage.
There are times now of light confusion when the mind lags. I have discovered the search for reality allows my instincts to take over with a quick resolution. My new motto.'* Let instinct rule when in doubt, with or without Alzheimer's.
Help me. Help me. Please help me. Please.
I am burdened with a "dyslectic" alphabet because I have to share my brain with Alzheimer's. I am embarrassed to tell this story be-
THOMAS DeBAGGIO
cause Miss Murphy taught me to be a fast, accurate typist forty-five years ago and I have retained those skills. This is not something between me and the keyboard; it is the intervention of illness.
As I type, my fingers hit unexpected keys and make words with similar sounds or rearrange letters. It began with small words. Recently I discovered the word "will" when I thought I had written "still." Another time the word "ride" turned into "rice." The word "ride" has also turned up when I intended "right," and "save" was substituted for "say." I have also noticed that the letter "B" is often substituted for the letter "P." As I wrote this my fingers struck an "M" when I was thinking "B." Sometimes this "dyslectic" alphabet goes unnoticed by me for several readings. Eye, hand, mind, the connections are weakening. Typos tell the story of the march of Alzheimer's.
There was wide diversity in the choice of classes to take in junior high school, unlike the grade schools I attended. Of the electives, my father thought I should take business and typing. Neither one interested me as they sounded boring.
I realized my mistake the first day Miss Murphy walked into typing class. She was young, trim, and wore high-heeled shoes. Darkly beautiful, she was shaped like a goddess, a woman who inspired me to lust before I knew what it was. She was a recent college graduate, maybe ten years older than her students. When she walked around the room her perfume started an erotic landslide. Those times she bent over my desk to help lit me up in secret places inside. I sighed deeply when she turned her back to the class and exorcised the chalkboard. She made my heart beat faster than I thought it should, and other parts of my body responded as well, although I did not yet know what to do with these feelings.
Metaphor is meaning.
Sayyes.
Say yes, you fool.
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LOSING MY MIND
No, not now. Wait for the end.
The end is near.
Memory is the past stripped of power, subject to imaginative flights, and easily manipulated into an untrustworthy cabal.
I journeyed to the grocery store yesterday with a short Hst of three things: the most important was cat food. I located the cat food aisle easily and as I started toward the cat food my attention was diverted by a box of Brillo pads, which we also needed. This morning when I came down to feed the cats I saw there were plenty of cat food cans and I realized I had not been the one who purchased them. It took almost twenty-four hours for me to remember the cat food I forgot to buy. My mind substituted Brillo for the cat food and erased my memory. I have vowed to write a proper list when I shop and never rely on my memory again.
Aliheimer's is hell-bent on destroying poetry and life.
I received letters of condolence from friends and strangers after I announced the Alzheimer's diagnosis. Many of the cards and letters mention Joyce and Francesco but the focus has been on me.
Joyce and Francesco suffer too, albeit in a different way. They must watch me as I lose my mind little by little, an excruciating torture for them as well as me. What future I have is finite and marginal, marked by the catastrophe of a disease as yet incurable. It is to them I must look for comfort and help. It is to them I tell the raw stories that confirm the diagnosis and drive the dagger of sadness deeper into their chests. They are the ones battered by worry about the future, their future without me. Joyce will have memory and loneliness to replace me. Francesco will have a life circumscribed by fear he may carry the Alzheimer's gene. While I have litde future, and almost certain death, their futures are full of lasting uncertain-
THOMAS DeBAGGIO
ties, confusion, and burning sorrow. The silence of death, the human lot in life, is soothing compared with that.
Does sleep so mimic death that it dreams our future travail?
I have no place to go now. I sit in a chair and try to capture fleeting moments of memories.
Should I go to some exotic place and live a short happy life he-fore the humbling andforgetfulness consumes me?
My disease is so hard on Joyce. It is the most unfair thing about my predicament. We have waited so long and worked hard for this time of release and thoughts of retirement. To have this come now is shattering. We should have had fun earlier instead of working constantly, but there was always the problem of money. Now Joyce looks forward to sorrow and picking up my pieces. For now, we hug more and try to understand each other truly.
Al:^heimer's has taught me that sometimes it is wise to look in the same place many times for the things you desire.
There is a natural tendency for children to emulate their parents and I was no different. Both my parents smoked cigarettes. As I reached high school, I realized how close to adulthood I was and yet how little like an adult. The quickest way to become more like an adult was to smoke. I couldn't legally buy tobacco products and stealing didn't cross my mind. I looked to my world to see how close I might come to my goal.
When I was not at home, I was either at school or down the wooded bank behind the house. At the bottom of the hill were the Old Dominion railroad tracks and a narrow, quick-running creek that flowed through a county park. It was in the tangle of brush alongside the track I found what was needed for a rustic, young try
LOSING MY MIND
at sophistication, dried sticks and hollow centers standing among the tangle of brush. Cut into the proper length, these sticks made good imitation cigarettes. With the strike of a match, I lit up and accepted my new, if hidden, refinement.
Each puff made me cough. It was a terrible experience that gave me pause, but I continued to practice clandestine sophistication. After a while, I acquired a pipe and some tobacco. My grandfather smoked a pipe with a sweet aroma and so did the boy who sat in front of me in English class, but I got no pleasure from smoking and one day threw the pipe away and forgot where the tobacco was hidden.
I go fishing because it is the only way society allows me to he a kid again, and it allows me to have time with my son.
After many years spent in the sunburnt outdoors, I now view the world through a glass window and scurry to my memory for succor. But there is not much left where dandelions once hummed of spring.
If my friends thought about it, instead of becoming emotional about me and this brain disease I have, they might see Alzheimer's as I do. It is a liberating event, freeing me to float through life and stand on its head.
The diagnosis, with little or no workable therapies to stop it, was a sentence of death as surely as birth, but more immediate.
I am running after thoughts all day. Ideas evaporate like snowflakes on a hot tin roof. A few years ago I felt normal and was as sharp mentally as my thirty-five-year-old son, Francesco. Now I can't remember his age or do the math in my head to figure it out. My mind is starting to break down. I hav
e to wait like a hunter to capture a thought; it is tough work all day but it often flits away before I can put it on paper.
'37
THOMAS DeBAGGIO
I want to cry and I do, but it is a peculiar sound, like a man choking to death. I want to scream but it won't come. Where did my
voice go.'^
As I sit in the waiting room for the doctor, Irealiie I am here at the edge of failure and of hope.
I have grown plants, herbs, and vegetables mostly, since I was six and for the last twenty-five years commercially. As a job, this activity allowed me a close look at the life and death of other species. My prolonged contact with plant life has provided me with insight on the similar life and death of my own. We scream louder.
>«.-.
It was always accepted that I was college bound. Washington-Lee High School was the stop before I went away to school. This new, more serious school was much larger than Swanson and it, too, had classrooms on two floors. There were home rooms where attendance was checked and the Bible read before the academic day began. I always considered this an affliction and managed to avoid it throughout elementary and middle school. I never read the Bible and as far as I knew my family had one but I never saw anyone read it. I assumed other Catholic homes were the same way. Somehow I always managed either to be sick or to forget my Bible (Catholics have their own Bible and are taught they must not read the Protestant version) and so I never had to read it before the class. I let others have that pleasure.
Things worked much as they had at Swanson; every forty-five minutes a bell rang for the next class. Lunch was different. The cafeteria was larger and there was smoking by students outside. Many students drove to school in their own cars, although not as many as today.
.38
LOSING MY MIND
I
I was studious, at least in the early years, but as I got older the science, math, history, government, and even gym, began to sour. By my senior year, I began to focus on words as my future. I enrolled in a class devoted to creative writing.
The students in the class were challenged to write poetry and short stories. I managed to win a poetry award in a contest with other high school students in the Washington area.
At this point, the disease has spared my earliest memories, allowing me to dwell in another time and place from the tortures of today. My earliest memories: undershirted men after supper throwing horseshoes. Crying in a crib. Boiling water spilling on my back, leaving me scarred. These are the minutiae of my life, but I know I will have to give them up before long.
This evil disease sleeps on the edge of my consciousness, always there to remind me of its wicked strength over me.
Although nobody wanted to know the news about my Alzheimer's, friends felt slighted if someone else told them before I did.
I have been hitting the "tab" key on this computer a lot today, and before it, on other computers and many typewriters for over forty years. I do it to indent the first line of a paragraph. When I did it a few minutes ago, it was as if I had never seen a keyboard. I didn't have a clue how to do it. I looked at the keyboard for almost two minutes to remember how to indent a paragraph. If I look in a mirror, when will I no longer recognize my face.'^
Yet somehow, religion was important in my house. My father knew the parish priest well and for a long time he was an usher. We were invited to fish on Chesapeake Bay with Father Beatty on his large motorboat. I was too young to appreciate fishing but I understood it was good to have a priest on your side.
AS DeBAGGIO
As a youngster, I was fascinated and proud to see my father as an usher. At a certain time every Sunday, he left the pew in which we were seated and walked up to the front of the church with a long-handled brown wicker basket. He used the basket to collect offerings. He stopped at each row of pews, passing the long-handled basket in front of each parishioner who dropped money into it.
At age sixteen, I obtained my driver's license, gave up church-going entirely, and became an atheist. I managed this surreptitiously. I left the house later in the morning, after my parents returned from church, telling them I was going to a later service but never went close to a church. Instead, I drove around in the car. Eventually I dropped the subterfuge and took the heat. There was a big blowup with lots of anger and loud words. It could have been worse but my parents, to my surprise, were realists and sadly accepted my behavior. I was thankful, but I remained on the course I set for myself.
IVhy am I possessed with the longing to have a grandchild? Let those angry genes that put me here die with me.
The interviews with Noah Adams on public radio sprang from the same nexus as this book. It was a way to talk to people about a troubling disease that affects millions of Americans, yet is little understood by the public. I have known Noah and his wife, Nina, for years. We have a common interest in the rich earth of gardens and in fresh food produced in backyards. I broached the idea to Noah in a telephone conversation one afternoon. He told me he had the same idea when he read of my condition, but he thought it unseemly to push the idea on me.
The interview came together at our farm in Loudoun County, Virginia. I had undergone interviews like this before, but Joyce and Francesco had not. They were nervous and uncertain. What would they say with meaning and relevance.'^ I tried to reassure them not to worry; the questions Noah asked would release their inner thoughts.
LOSING MY MIND
Noah arrived with a soundman and a producer and a modest amount of equipment. Before the interview began, we chatted in Francesco and Tammy's living room in front of a crackUng fire. Noah held a microphone in his hand and began talking to us casually, steadying those with uneasiness. He talked about everything but Alzheimer's. He exposed his Ohio boyhood and his first radio job failure. He looked at the soundman, perched next to me, and said casually, "Is everything ready.'^" He nodded and we were off. The interview took over an hour but with skill and sensitivity Noah and his producer found the essence of what we had to say in about twelve minutes of tape.
My intention in both this book and the radio interviews is to break through the sense of shame and silence Alzheimer's has engendered. I want people with the disease to come forward, unafraid of exposing their illness, and tell the world what it is like. Doctors and advocates can help, but there is nothing like personal stories to humanize the silent, destructive power of this illness. The more we talk about it and expose Alzheimer's, the greater the chance a cure will be found quickly.
The best thing that happened to me in high school was getting a job on the Northern Virginia Sun when I was in eleventh grade. The Sun, a small daily paper then in Arlington, was saved from deserved obscurity by a group of important Democrats, including Clayton Fritchy, the publisher. I was one of several students who worked for the teen-page editor, a no-nonsense woman who put together a daily page about schools largely written by teenagers.
I was happy in ways I had never experienced. I was, for the first time, being paid for writing, twenty-five cents an inch of printed copy. At the end of every month, I spread all the squibs and stories I had written, counted the inches, and submitted a bill to the newspaper. I scribbled so many stories the editor of the page hired me to work after school. It was here I fell in love with journalism and got a small taste of the power a writer has and the backlash that can come from it.
THOMAS DeBAGGIO
With no camera and little money, I went to a part of Arlington called Rosslyn, a seedy district filled with pawnshops and rooms to let above them. I purchased a cheap camera in a pawnshop to record the action for my first big story, an expose of hazing practices by high school fraternities and sororities, outlawed by the state, but still in business. It involved things of which students were aware but the general public was not. I wrote a story, including photographs of fraternity brothers using huge paddles on the backsides of plebes.
The story was a sensation but it did not endear me to the school principal, a small, angular man who o
rdered me out of class and into his office. He wanted an explanation. This was the first time something like this happened to me and I was scared but defiant. I told the principal I was covering the news at the school. If he didn't like what I uncovered, he should change what was happening at the school, not pillory the reporter. The idealism of youth prevailed.
After I reached forty, I cast aside youthful energy and dreams and hugged an uneventful life. This muted life left me blind to my hungry past, emotionless but trailing hurried whispers.
It may appear to be just another illness, especially of the elderly, but Alzheimer's is a unique and wrenching disease that destroys the mind, without which you lose your sense of being human. In its early stages, when you are most sensitively aware, you watch helplessly as you slowly lose yourself. Memory disappears. Language is gone. You forget who you are and become lost and dependent. Yet you continue on in silence, the body unsure and hesitating, as the diabolical disease proceeds to kill you slowly by destroying what remains of your body and your life. But the destruction continues, doing its best to uproot your loved ones and dip their hearts in the fire.
My mind is becoming one-dimensional. I have almost lost my ability to hold two thoughts simultaneously. Along with this is the long, frustrating wait for the word I need in conversation.
LOSING MY MIND
When my doctor prescribed one-half hour of reading each day, I was charmed and bewildered. That something so simple as reading affects the brain made immediate sense. She wasn't kidding. She wanted me to work my brain, play its keys, and search its private places. It was a return to an earlier time when words encircled my small world and hope was a genie without a bottle.
This brain exercise wouldn't be a cure but it might slow its passage toward atrophy. Talking and reading were how I got started filling my brain after birth. Now I was asked again to work my brain, this time to keep me alive a little bit longer.
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