After the move to the apartment, my handmade wheel, on which the first pots were made, gave way to a more efficient electric model with a sturdy metal frame. It was this wheel, along with more sophisticated "dirt," that found itself in the basement of our house on 26th Street. It was during this time I discovered Edna Lee and her pottery gallery on the border of Alexandria and Arlington that everybody called Arlandria.
For a while, my unemployed self had a Saturday job in the basement of Lee's gallery. My job was to mix different dry clay and wet it. This was heavy, dirty work and the mixing was the most ar-
THOMAS DeBAGGIO
duous. After the clav was mLxed it sat for a week to allow the excess water to rise; then the clay was wedged by hand, pushing the air out of it to make it workable and smooth. The basement had lights but the work was tiring and I was always glad to come out of the earth and into the sunlight.
It was at Edna Lee's gallery that I met Dick Lafeen. a potter, artist, and teacher. I made some money posing as a Christ figure in a painting Lafeen painted one simimer. Ail the artists I met wanted to help me. and Lafeen showed me manv techniques in making pot-ter^ I remember watching the potter create a huge flawless, thin-walled bowl. As the clay spun on the wheel, it rose like magic in Lafeen's hands, a living thing springing from a Girling disk, a colossus, beautiful and roimd with the subde marks of the maker's fingeqDrints on it forever. Later. I saw the piece in Lee's galler^ and it was decorated uith a subde, multicolored glaze that shimmered in the light and took my breath away.
On a pleasant^ sunny day like this several years from now, I will die with no sense of what is happening and surrounded by mourners who can know nothing of my inner travail, a pain I will never be able to utter in my Aliheimer *s silence.
I learned much about modem medical technology in the last year. I like best the part where you He dowTi in a semidark room and snooze inside an MRI or PET machine, massive devices emitting strange noises, although it is a very expensive nap. I like less the medical stuff where you take your clothes off and some guy tickles you where you thought it was private. There is a lot less of that with Alzheimer's because the interest is at the other end of the body where the brain lives, and that is fine with me.
In mid-February, eleven months after I begin this Alzheimer's audacity. I underv^'ent another drowsy test, mv first PET brain scan. PET stands for p>ositron emission tomography, a high-tech machine to look inside a brain. It makes snapshots of what is in there. Even-
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tually I received two beautiful sheets of negatives with Uttle pictures of my brain.
Within a few weeks of the scan, Dr. Blanchfield explained it to me. She told it simply with a kindness that was straightforward and sympathetic. The dark stuff on the little pictures of my brain was good; the white or light-colored stuff was not, because it signaled something had been there and was gone. It was the opposite of what I had thought when I first saw the pictures.
John D. Rauth, Jr., who actually interpreted the complex imaging, explained it this way in a letter to Dr. Blanchfield: "The patient is a fifty-eight-year-old male with memory and speech problems. His dementia is clinically more progressive than expected. An MRI performed on 3/11/99 ^^^ normal."
The PET scan revealed, according to Dr. Rauth, that "there is decreased activity involving the left parietal region bilaterally, left side more so than the right side. Also, there is decreased activity involving the temporal lobes, again left side more so than the right side. These findings are most consistent with early Alzheimer's disease."
This came as little surprise to me. My antenna had already picked this up. As I wrote this little book I encountered increased difficulty with language and loss of vocabulary, increased misspellings, and difficulty in organizing thoughts and sentences. I concluded my brain was under siege from Alzheimer's at a quick march. In some crazy way it is good to have my own assumptions reinforced, although this was one of the few times I wish my intuition was wrong.
Memory is seduction.
There was a little newspaper called underground back in the sixties and it was all mine. It was written and put together in the house on 26th Street, a domicile often filled with laughter, politics, music, and strange people. A few newsstands in Washington, New York,
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and San Francisco sold the paper. Joyce, baby Francesco, and I hawked the paper on street corners and college campuses in Washington.
These were the beginning days of U.S. involvement in Vietnam, as politics began to overcome culture and music, and paranoia became the food of conquest.
Carl Bernstein, then a reporter for the IVashington Post before his expose of Watergate with Bob Woodward, made underground, my newspaper, locally famous with an article. The Posts attention was focused on an incident at American University in which a school official tried to keep Joyce from selling papers with little Francesco in her arms. The incident quickly grew as students surrounded them with free press rhetoric.
Publicity about the event brought a series of hate calls and threats. It also increased the number of friends and strangers who came by to serenade us with tunes on spoons and nose flutes or to "yak" about books or the state of the nation, or to find out whether we were wife swappers. Joyce and I loved company so much and had so little money that almost anyone who knocked on the door was admitted, even a disheveled man with an alcoholic pallor who kept dropping his pants.
One of the first strangers to whom we opened our door was a large man who came to sell cemetery plots. The usual misunderstanding between salesman and potential customer occurred. He thought we wanted to buy; we thought he was entertainment. All I remember of him are his fingers. On one hand fingers were tattooed with the word "love" and on the other "hate." It was an emblematic marriage of words for the times.
Little Francesco crawled through it all. What else could he do.'^ There was no television in the house.
^->
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Since December 1999, every three months or so Noah Adams of National Public Radio arrives at our farm in Loudoun County, Virginia, with two colleagues, producer Lisa Harmon and soundman Drew Reynolds. We sit down in Francesco and Tammy's living room for an interview about how Joyce, Francesco, and I are getting along with Alzheimer's. Noah asks questions in the manner of a kindly doctor. Here are some of the letters that arrived at the Washington, DC, headquarters of NPR after the second interview:
I AM WRITING to thank you for your story about the De-Baggio family of Virginia and their struggle with early Alzheimer's disease. As a clinical neuropsychologist, I am very familiar with the symptoms of Alzheimer's disease and its debilitating effect on everyday functioning. Your story, however, reminded me of how Alzheimer's disease feels to those who cope with it on a daily basis. I was touched by the honesty of Mr. DeBaggio and his family, and I commend them for allowing us all to share in their journey.
I AM THE SON of a Parkinsou's sufferer, a similarly debilitating neurological disease. I was struck by the many similarities between Mr. DeBaggio's mind-set and that of my father. Reflecting on Mr. DeBaggio's description of the transition from early "puzzlement" with his condition, to frustration and infuriation at the pace of its advance has really helped me better understand my father's situation as his condition worsens.
MY DAD WAS DIAGNOSED with Alzheimer's 11 years ago in his early 50's. As horrible as the disease sounded when we first researched it, the reality has been even more cruel. After a few years, my dad was reduced from a loving, sharp-minded, and athletic man to an agitated, utterly helpless, distorted shell. My mom has been simply heroic in her
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care and advocacy tor him and he gets the best care available. Yet it is hard to believe that he is not miserable. But, somehow, his humanit' and goodness are still evident—in a sigh, a touch, or a look in the eye. And that is the hardest part of all.
IN MY OPINION you have performed a disservice today in your follow-up in
terview with the DeBaggio family and
earlv Alzheimer's disease. In vour earlier interview, I believe that some documentation that Mr. DeBaggio had the disease was pro'ided. Little background was provided today, and the interview appeared to be an attempt to present manifestations of the progression of the disease. X'J'hat is frightening is the apparent normal behavior of this man. In its earliest form, manifestations of Alzheimer's disease may be subde. Emotional behavior, forgetting names, confusion, and frustration in operating telephones may reflect early Alzheimer's or overlap normal beha-ior or normal aging. The fact that Mr. DeBaggio believes he suffers from the disease may increase his anxiet^ and exaggerate his symptoms, as it ^^ill normal individuals. I wonder how much anxietv- you have created and how many people -v^dll wonder whether they have earlv Alzheimer's disease after listening to this inter-iew.^
Are we bom with a fear of our bodies? Could that be why we pay so little anention to what is inside and so manv hours are spent pampering the exterior and festooning it with colorful threads.- ^ e breathe without awareness. Not until something goes cockeyed wrong inside do we become aware there is an inside to look after, an interior for the mind, as well as the arteries. There is so much to know, so linle time, and we pav so litde attention to an elbow.
Maybe it is good we are so body ignorant. If we spent time tr)*-ing to understand what goes on inside, we'd get nothing done.
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Might not be a bad idea, doing less and shaping our Uves on nothingness.
One day there was a knock on the door of the house on 26th Street. I opened it to find a wiry, aging man before me. He came from New York where he read a copy of underground. He stepped inside. Thus did Joyce and I begin a fast, unbeUevable ride on the poHtics of the absurd.
Austin said he was an advertising executive from New York, preparing his run for vice-presidency of the United States. Of course he wanted help, bodies if not money.
That first day Joyce and I listened and laughed as Austin recounted wacky stories from his campaign. After a few hours of nonstop talk, it was clear he was a modern Don Quixote without a biographer. When we got weary, we bunked him with baby Francesco, although Austin was provided a bed of his own.
A few weeks later he appeared again. He stood before the open door holding a woman's leather Indian costume for Joyce. He had a male costume full of feathers for himself. Joyce became Princess Summer-Fall-Winter-Spring; Austin was Chief Burning Wood.
His idea was to do a little politicking and hell-raising on Capitol Hill. In preparation for his political appearance on the Hill, he sent a series of outlandish letters to favored salons.
The historic morning was cold but there is warmth in humor, especially when there are enough bellies laughing. Baby Francesco was along, probably the youngest political hanger-on in history. The first stop was uneventful, except Austin was unable to talk with his congressman. We walked around the corner to another office. This time we were greeted at the door, but the entrance was blocked by a large man, a congressional aide.
As the day wore on, a contingent of Capitol Hill police attached itself to our foursome. The men in blue never joined the "Indians" in the elevators. One time Austin waited a few seconds after the elevator doors closed and then pushed the "open" button. Before us
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we saw the Capitol Hill policemen running in all directions, sliding on the slick marble floors, trying to regain traction to carry them up stairways and down, in an effort to reach the next floor when the elevator stopped.
None of the congressmen met with Chief Burning Wood and Princess Summer-Fall-Winter-Spring with her little papoose or the lanky, black-bearded guy taking notes.
Austin was overwhelmed by his day on Capitol Hill. On his way around the Capitol Beltway in the dark, he missed the turn to New York several times. Afterward he said he continued to circle Washington to put a hex on Congress.
Some days it seems I live in two worlds. In one I am afflicted with Alzheimer's, gasping as words slip though my lips with effort and suffering imprecision. This is the world in which I have to tell my companion I can't remember the word to make the sentence.
In the other, slower world where I write on paper or directly on the computer, vocabulary is more fluid and I often surprise myself when the perfect word finds its way into the sentence without effort. This has puzzled me from the first sentence I wrote for this book. It is only now, eight months later, I begin to see more clearly how necessary it is to slow the pace to achieve a former normality.
The reason for the difference may be that speaking is performance, a public act with nervous tension, while writing, although it may carry the same words and meaning, is private, slow paced, and more amenable to revision. The narrow edge between writing and speaking makes a larger difference in the world than I imagined before Alzheimer's. Perhaps it also has to do with seeing the written words. Spoken words are born and die quickly. When written, words are created more deliberately, and may call upon a larger part of the brain.
My days are gone, forgotten in a garbage bag of the soul. Only empty flesh remains where there was once a man with a mind filled with dreams.
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The day after I was diagnosed with Alzheimer's, my first thought when I awoke was of suicide. It appeared to be a logical thing to contemplate. I was facing a difficult, slow decline, leading to eventual loss of nearly everything human beings value, ending finally as a near-vegetable rotting in the sun. Most important, my early demise saves thousands of dollars spent on my care as I deteriorate. I didn't want Joyce to end a pauper or have Francesco lose the farm.
I talked to Joyce about my thoughts carefully. It is to her I defer because she carries the burden of my care. I saw tears tease her eyes but her voice was clear and emphatic. She was against the plan. She wanted me around as long as possible in any condition but dead.
I deferred to her wishes. It is for her I live now; there is nothing else for me. A real life has expectations and dreams, and mine are gone, unless you include my desire to catch another large trout on Mossy Creek. I no longer easily remember what day it is and I have trouble remembering routines I have followed for decades. The sav-ageness of my out-of-control body is a surprise to me and its quick ugliness frightens me. Some part of me will live through it until the last day, but the young Tommy I was forty-five years ago is quickly dying and is more a memory for others now.
As I write this, tears suddenly begin to flow from my eyes and I choke in spasms of grief. The past surprises me with emotion I never realiied was there. The tears remind me of how little time I have left with these memories.
More and more I am unconsciously mixing words that have similar sounds: our and out, would and wood, me and be, to name a few. This leaking alphabet of reality is something I might have expected in speech, not in writing.
I look to the future and see myself in a state of not dying but without life, an unseen cripple. I am a place barren of memory. I can see myself in a mirror but I do not recogni:^e the image in
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the glass. The world around me is filled with secrets, entombed in lost memory. I stand on the corner, waiting for the light to change. Without memory I am unknown to myself, lost in an anxiety of darkness.
I found myself strangely silent at Joyce's Sunday birthday party. The search for words was too great a struggle. Silence hid my handicap and made life easier. Alzheimer's is making me mute out of necessity. I will save my spoken words to decorate these pages.
Life has slowed as I watch Alzheimer's take over. Even the simplest tasks become laborious with a hesitating rhythm. No longer does my mind run me. I must wait for it to catch up before I know where I am.
^^
How did I find my way to a flophouse in the county seat town of Peru, Indiana.-^ It was an act of desperation; I was out of money, broke by my desire to publish truth. I was anxious for a job in journalism and I pored over job ads in trade papers. The Pe
ru Daily Tribune was one of the many newspapers to which I sent a resume. After an interview, I got the job.
Before I settled down in Indiana, a trip to Iowa to see my parents was in order. They moved back to Eldora a few weeks after Francesco's birth and they prayed for a visitation of the little one. On the way back from our visit, Joyce dropped me in Peru where I rented a dark, smelly flophouse room opposite the newspaper, and looked for accommodations for my family. Joyce and Francesco went back to Arlington to pack.
Soon I found a place to live in the upper floor of a generous duplex and started painting the dingy walls. The biggest drawback of
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the apartment was a staircase connecting the upstairs and downstairs kitchens. Later it was common to see the landlord's shirttail disappearing down the steps when Joyce and I came home.
For mental succor I befriended the town librarian, Dave Bu-cove, an Easterner who knew the town and its foibles. Dave was instrumental in having all my underground pdnpers microfilmed.
I discovered Paul Kelly, a curmudgeon with an acid sense of humor, at a town festival. A displaced Chicagoan, he was the last vestige of the circus in Peru. The barn on his farm swayed with the weight of elephants and their babies. He was outspoken, to put it mildly. Although the town claimed the birthplace of Cole Porter, Kelly's description was not lyrical. He dubbed Peru the last cemetery in the United States with lights and running water. Francesco fell in love with Kelly's ponies one afternoon. Joyce primed her house plants with Kelly's zoo-do.
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