We saw all the sights in Paris. I wandered alone in the deserted market district where the air was the color of granite with a feeling of empty fear in the air. The biggest surprise was watching my puritanical father at one of those tourist-trap girlie shows with nearly nude women kicking up a storm on stage.
In Switzerland everything was so orderly it made you want to spit on the street. Every man carried a briefcase and the hotel pulled down the cover at night and put a wrapped chocolate in the exact place where your head was to lie.
'53
THOMAS DeBAGGIO
It was Italy for which my family had been waiting. Watching the men in their tight clothing saunter down the street with jackets hanging over the shoulders was to see slow-moving sophistication. The women had an attitude to match the men, strong, earthy, and openly sexual.
Motorbikes, bicycles, and cars clogged the polluted streets and alleys of Rome. Dark shadows of shade protected us from the hot sun and there were dainty chairs on which to sit while sipping a drink.
From Rome the family darted to Venice, floated on the canals, walked over the bridges, peeked in the churches without chairs, and watched the artisans heating metal and hammering it smooth and shapely. For all the sightseeing, there was one event more important than others, the car trip to Romans, the village of my Grandpa DeBaggio's birth.
Romans was a dirt road kind of place where doorways hung with bright, beaded cord. We stopped at the church first to inspect the register of births. We counted the Di Biasio's, as the name had been before the transatlantic separation, centuries ago. By the time we finished the tour in the church's birth records, the whole village knew Americans were there. A man waited for us when we returned to the street. He was wearing the local wooden shoe and spoke English, a version of which he learned in Texas and Iowa.
My father wanted to meet any relatives who might still be there and we were taken to see an old man who stood at proud attention in front of his small detached house and spoke Friulani in response to our English. Then we went to a cramped little house with an earthen floor and a hole in the roof for a chimney. This, we were told, was Grandpa's home in Italy before he was lost to America.
The scourge of my young life, especially in school, was the Bible reading that was required every morning. How this practice got started I don't know, but it was routine in public schools I attended in Virginia. Somehow I managed to avoid uttering a Bible passage throughout my ten years in public schools, through either luck or
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illness. It was not just the idea of standing up in front of the class that weakened my knees; that was bad enough. Reading words that seemed to be in a language almost like English but not quite recognizable really made me nenous. My shyness was a huge deterrent when it came to standing up in front of the class for any reason.
I was brought up in a Catholic family in a place with few Catholics. To my parents, being a CathoUc was serious, but reading the Bible was not something I ever saw them do. It was the Mass on Sunday, not the Bible, to which my parents clung.
In the background lurked a remote but palpable fear that we might be rounded up any day and killed for our religion. Catholics had been hanged in the South and the Klan was still active when I grew up. ^'hen the time came, later in life, to make my own choices it was easy for me to adopt an atheist position. I had enough of religious zealotry.
In school Protestant Bibles were used and I was forbidden by Catholic Church law to read such books as the King James version. I took the ban seriously because my father did. It meant that when my day to read the Bible came around I had to bring my Douay Bible to school and expose myself as a Catholic, and this I wanted to avoid; it was bad enough being teased for my skinny body and shyness.
Although I was out of school when the practice of reading the Bible in pubHc schools finally ended, I shouted for joy just at the memory of all the fear I underu'ent.
Cold winter morning iced in fear,
sidewalks lathered slick with white stuff.
Filled with images of cobbles.
My bony head, immobile, eyes closed.
Images of coffins. Rigidity of death.
The way it ends.
No matter age or how hard you tried. Or lied.
THOMAS DeBAGGIO
What accomplished.
How get through this.
Same tunnel as before. Keep going, moving ahead.
Alone or not. No matter.
Yelp of pain, smile of pain. No matter.
Secret mind talk without remembrance. Cobble me a cobble. Shroud. Where is shroud? You can V death me without shroud. No bury; hot coals leaping, bright sparks and flesh si^le.
Dust to dust. Amen
- MY LAST WILL AND TESTAMENT, JANUARY 22, 2000
I got to like Mike while we worked together at U.S. News and World Report. Eventually, he went to Mexico to study at Mexico City College where he fell hard for his guitar and life.
During those days as a copyboy I discovered Henry Miller's work, which was still banned in the United States. His books, published in France by Olympia Press, were autobiographical, freewheeling, and sexually frank, exactly what a late-teenage boy brought up in a Catholic family needed most.
One of the copy editors at U.S. News had spent time in France as a wire service correspondent. He loved to talk about his adventures in Paris and other cities in France. He interviewed Picasso, among other luminaries, and told us he watched the famous artist go swimming nude. He read all of Miller's books and told me about them.
I obtained the name and address of a mail order store in Paris and ordered Miller titles. Before long the mail brought a card addressed to me from U.S. Customs explaining the books were banned in the United States and had been seized and were scheduled to be destroyed unless I proved I had a scholarly use for them.
Unfortunately, I was not the first person in my family to read
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the Customs notice; my mother also had the pleasure. That night was not a pretty affair as my father grilled me about what I read and why I desired to possess banned books.
I corresponded with Mike and told him of the seizure of books from Paris. Mike told me of a bookstore in Mexico City that stocked all of Miller's books up to that point and shipped them anywhere in the world. I was hesitant about ordering them, but looked upon this as an opportunity to join Mike in Mexico City where he shared an apartment with a fellow former student from high school.
I led a sheltered middle-class life and was unprepared for what I found in Mexico City as the train crawled through the slums. There seemed to be endless miles of cardboard and scrap-wood shanties on bare ground. Children and adults openly urinated outside their leaky shacks. It was dusk as the train pulled into the station and I had the eerie feeling I was walking into a mysterious, surreal Brueghel painting.
Parents have many responsibilities, including teaching their children how to eat grapefruit.
With failing memory, it is difficult to write long passages without getting lost in words. Where does the story go ^ Why does the pencil tremble? I see only the structure of words, their meaning elusive. lam often able to write only a sentence or two, enough to sketch what was to be brawny and complex. Do you understand I am not dying, just disappearing before your eyes?
On an early Sunday morning in July, I waited nervously for the driveway gravel to announce my thirty-five-year-old son's arrival. Francesco is our only child and I asked him to drive me into Washington, DC. Normally I would have insisted on driving myself, but more than a year ago, I plunged into forgetfulness and memory loss. Although my dementia is young and hardly identifiable to the walking-around world, my brain has begun to abandon me, leaving
THOMAS DeBAGGIO
insecurity, un-self-confidence, and anxiety. Once in a great while I am treated to a transitory nocturnal hallucination of bright-yellow lights dancing on walls and ceilings.
One of the important failings that beset me was
my inability to picture in my mind where places were and how to get to them. I can still negotiate the familiar streets of Arlington, Virginia, where I have lived most of my fifty-eight years. Trying to find my way around the mysterious streets of the District of Columbia is more than I can manage, even with detailed instructions.
Francesco had not arrived and I was anxious. I started walking back and forth between the kitchen and the living room. I pushed the living-room drapes aside for a better look at the driveway and the street. Francesco lives on a five-acre farm in Chantilly, Virginia, with two houses and a large brick barn and as much wildlife as anybody could want. Following in his father's footsteps, he grows and sells herb and vegetable plants in greenhouses there. It is about forty minutes from the Arlington house. What if he overslept or got stuck in traffic.'^
I started a backyard farm with my wife, Joyce, nearly thirty years ago after I gave up journalism in frustration at wimpy editors and sly newspaper owners with monied friends who wanted front-page coverage of nonnews. About the same time, Joyce struck out on her own as an artist and she still maintains a studio at the Torpedo Factory Art Center along the Potomac River in Alexandria, Virginia.
In the small backyard behind our 1918 wooden house on Ivy Street in Arlington, Virginia, I began an apprenticeship with the earth and dirty hands. After a short period of growing tomatoes and cabbages for our own desperate needs, I realized ignorantly that there was something incredible about growing food from the earth. To make a life with a tiny backyard farm, I had to know more about growing plants, particularly herbs, which were an underrated crop, plants in which I eventually specialized. I haunted the Library of Congress, searching for growing information. I also contacted academics in the horticulture field and bled them of their secrets.
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I
Our little backyard was an unlikely place to begin farming. Next to us on loth Street was a used-car lot and opposite it a new-car dealer. Years earlier, livery stables occupied the property opposite what is now the used-car lot. When the horses died, their bodies were buried on the property next to ours. Under the hot, dark asphalt of today's used-car lot lie bones of dead horses who provided transportation in another era.
Eventually our backyard sprouted several greenhouses and became one of the first successful urban herb farms in America. Despite the hard work and frustrations caused by nature, it was a joy to watch our little idea grow into a business that supported us and helped send Francesco to college.
As I reached my fifty-seventh birthday, I came upon the greatest challenge I ever faced. I thought I was breaking into pieces. I found it hard to concentrate because shards of memory kept disappearing suddenly. It took me by surprise and left me angry and bewildered. My initial feeling was that a steady diet of anxiety and long days were the cause. But what was responsible for my inability to remember the names of familiar plants.'^ After a long series of tests, I was told I had Alzheimer's. Without a cure for the disease, I realized my days of loo-hour weeks were over.
At the end of spring, we closed our Arlington plant business. It ended an important part of our lives and there was happiness and tears celebrating nearly thirty years of dirty hands. We no longer had our people of the spring and fall to brighten our days, customers yearning for a connection with the past and finding it in a garden of herbs. The streets, once full of customer's cars, could now rest.
Although Joyce and I continue to live in the house on Ivy Street, we consolidated our plant-growing business in Francesco's capable hands in Chantilly, Virginia. I was free now of other duties and could devote myself to writing during what I considered my last years. I had managed to write, or collaborate with others, on three books about gardening and herbs in the last ten years while working in the greenhouse. These were fine books but not what I dreamed of
THOMAS DeBAGGIO
writing when I was in high school, when James Joyce and Henry Miller were my idols.
For a few short weeks after the diagnosis, I thought my life was over. I didn't know where to turn. I thumbed through scientific reports trying to understand what happened to me. I didn't ask why but I wondered when the illness's intrusion began, and where it came from. Was it my father or my mother who passed the bad gene to me unknowingly.'^ Or was it a freak occurrence.'*
After those weeks in silent introspection, I realized this slow-moving disease offered a great opportunity to me. The Alzheimer's diagnosis freed me at last to write seriously and well if my gift of language did not fail me.
Francesco's car crunching the front-yard gravel disturbed my thin thought at 8 a.m., more than an hour before the start of the panel discussion in which I had been asked to take part. The panel was a small part of ten days of intense discussion at the World Alzheimer's Congress.
I took one last look in the bathroom mirror and combed my hair again. My head was quickly filling with white hair but enough dark strands remained for me to remember the lustrous black that crowned my youthful head. This falling, long face and that nearly white mustache was what I feared all my life—my father's image, an old man, not even a grandpa. It wasn't as if I hadn't earned these stripes of age honestly, but I'd trade them now to be thirty-five again even with all its wonder and insecurity.
Generationally different but obviously in the mold of his father, Francesco is a young man with black hair hanging down his back, almost to his waist, and a mind as sharp as a steel trap. I fear for him now like I never had to do when he was in high school and college on his own. I see him watch me sometimes, searching for a clue whether he will end his life as I am mine, mentally crippled, bewildered, helpless, waiting for death to end my pain and panic.
We got in my beat-up, peeling Ford Explorer, Francesco at the wheel, and headed downtown. I began telling Francesco what had
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happened the last few days. A whirlwind had ripped through the preparation for the panel discussion. For several days it appeared I would be the only participant. No one with Alzheimer's in the Washington area except me, apparently, was willing to participate. At the last minute, Lisa Gwyther from Duke University, the panel moderator, located some willing men and women with Alzheimer's in Ohio and brought them to Washington.
A week earlier I was preparing for an interview with Madeleine Nash, a Time magazine medical correspondent. She planned to meet me Saturday, July 8, the day before the Alzheimer's Conference was to begin. She didn't show up for the interview and I called her at her home in Illinois. When she answered the phone, I realized Time had changed plans. Instead of offering the story after the convention, they decided at the last minute to have a story before the Alzheimer's Congress began. Madeleine Nash stayed home and worked the phones and wrote words.
By now Francesco was tooling through Washington streets. We were following a map given us by the Alzheimer's Association and it was taking us all over the place.
"I don't know where we are. Do you know where you are.'^" I asked Francesco.
"I don't think so," he said.
He did know and we got there in plenty of time, no thanks to the map.
The panel was predictable, a question-and-answer format with the moderator guiding us through the hoops. The large room was packed and silent. We all had stories to tell and Gwyther knew them and helped us tell them well. I choked when I heard one panelist's story. After going through a long battery of tests, and a time of anxious waiting, his doctor sent a letter to tell his patient he had Alzheimer's—a doctor out of the same school as the one I had in the beginning of my battle with Alzheimer's.
I am learning there are many levels of memory. Where am I in the
THOMAS DeBAGGIO
process of dwindling returns brought on by that deliciously foreign-sounding disease, Alzheimer's? I can still type letters with some authority, although with many typos. Some people tell me I still have more than enough speech. In the morning, I can rarely remember what clothes I wore the day before. Notes at different locations arou
nd the house remind me to take medication. The day after I write a letter, I may remember the envelope but not its content. After some thought and several minutes of struggle, and maybe some stuttering in my brain, I may sometimes remember to whom the letter was addressed.
^^
There was a time I was under the influence of the French Surrealists and I cataloged my dreams daily. Those youthful days are gone without a firm memory. Now my dream world, when it exists at all, is absorbed before I recognize it. Last night, however, a dream awakened me with its silent disruptive power and left me limp with its frightening images. The dream's imaginative force was so great I struggled to breathe.
The dream was a black-and-white "B" movie. The main character worked in a store ringing up sales much like me, but to my horror, none of the items for sale were priced. The merchandise in the store was unfamiliar to me, so much so I didn't know how it was used. All the customers were tough and surly, constantly changing their minds and making threats.
At one point in the dream I went to the bathroom in the store, but I kept losing my way in a hall of mirrors. It was a disorderly world in which I moved, with signs upside-down and backward.
Now my dreams, those secrets of the night, betray me. I cannot hide from the mental contamination of Alzheimer's. I pulled the covers over my head to flee my growing inadequacy, fear, and failure.
When I was fully awake and I caught my breath, I realized this
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nightmare was just another billboard reminding me my life was no longer mine. The disease has wrested me from the command of my skills and even the secrets of sleep. Alzheimer's has followed me to the bedroom and captured my dreams. Now I am certain there is no place to hide.
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