Clouded memories flit through my brain, wandering moments in a jumble of events only half-remembered. Faces smiling and sullen rise through a mist of years. Is any of this true!' Can memory lie? It is too late for me to judge. Days are numb with forgetfulness and verbal stumbling.
With summers came change in the population of 14th Street and the biggest transformation occurred opposite us. An elderly couple lived there in a little rambling house with porches back and front. Except for summer the house was so quiet I hardly noticed its occupation. When summer's hot, muggy weather arrived, throngs of friends and relatives filled the house.
I sat in the front yard and watched them. To spy on them, I climbed one of the apple trees. A mysterious person showed up frequently in summer and winter. I wasn't sure whether it was a woman or a man. He seemed to have breasts like a woman, but she wore clothes like a workman's. In summer he wore undershirts like
THOMAS DeBAGGIO
my father, the sleeveless kind, but there was the bulge of small breasts. She became an enigmatic figure to a child.
When you have a small business like ours, you come into contact with a lot of people. Many of these customers became friends over a period of time. I had no idea how many lives I touched until I wrote about myself and Alzheimer's in our little plant catalog. Soon after my self-written obituary appeared in the catalog, Washington Post garden columnist Adrienne Cook wrote an appreciation of my work. Soon the mail began to arrive from customers wishing me well and telling me how much plants meant to them. The mailbox overflowed in Arlington and at the Loudoun farm. I was awed. I never realized I touched people with plants and words. Nobody has so many friends and well-wishers as I.
One of my correspondents, Richard Mason, wrote me a letter full of the words of the Greek poet Hesiod and I include some of them here because I was driven by what this poet had to say so long ago. "A man may have some fresh grief over which to mourn," the poet wrote in Theogony, "and sorrow may have left him no more tears, but as a singer, a servant of the muses, sings the glories of ancient men and hymns to the blessed gods who dwell on Olympus, the heavy-hearted man soon shakes off his dark mood, and forget-fulness soothes his grief, for this gift of the gods diverts his mind."
My correspondent closed his letter with this thought, one easily equal to Hesiod. "For many," he mused, "Hesiod has such a bleak vision that I wonder whether I should recommend reading him to anyone. It's hard to offer comfort. What can one say in the face of misfortune.'^ There are times when we must take root among the rocks."
I believe Hesiod would understand why I have written this book. I too have dipped my finger in grief and have been lifted by poetry.
LOSING MY MIND
I
When I was eight my parents decided to "airmail" me to Iowa to stay with my Grandmother Davis ahead of their regular vacation trip by car. The plan was for me to arrive several weeks before Mary Ann and my parents. I could help my grandmother clean her windows and cut the grass. We could get to know each other better.
I was glad to have extra time in Iowa because my grandmother had a wonderful library with the privacy of sliding doors. I was particularly looking forward to viewing her fine collection of National Geographic magazines, which contained extraordinary photographs of nearly naked native women around the world.
My parents worried I was too inexperienced for such a journey, never having been in an airport or on an airplane. They sought the aid of my father's cousin Pete, a military man with a family that had a long history of moving around in airplanes to different places in the world. He had relatives in Iowa and my parents thought it might be good for his son, Tex, to accompany me on the plane. Tex was six. My father talked me into believing the age difference was made up by Tex's experience.
Tickets were purchased and bags were packed. Tex and I boarded the plane and between the stewardess and the friendly passengers we had no problems at all. We changed planes at O'Hare in Chicago and flew the short leg of the flight to Des Moines, Iowa, where all the grandparents awaited.
I went on an errand this evening soon after dark. I was sure of the direction and the route and I plodded off toward the copy store. It was a familiar location, but I had never been inside the store.
I came to an intersection at a small side street. I looked to the left and saw two cars. It appeared they were waiting for me to cross. I waited for a moment and began to cross. At that moment I looked to my left and saw a car bearing down on me. I jumped out of its way and started on. Before I crossed the street, a second car roared across the intersection, barely missing me.
THOMAS DeBAGGIO
Halfway to the store I had a pecuHar feeUng of foreboding and disorientation. It was as if I suddenly found myself in a strange city full of traps.
Finally, I came to the copy shop and it was bright and large. I walked up to a counter where a young woman waited on customers. She avoided me and would not look at me. I checked myself. My pants were zipped and there was nothing hanging from my nose. Was there something wrong.'^ I waited. The clerk finally looked at me. She said nothing but gazed in my direction as if I were from some faraway planet. The copy machines whirred behind me. "I'd like to have this copied," I said, handing her the newspaper clipping.
"A color copy?" she asked.
"No, just black and white," I said.
"The machines are over there," she said, pointing behind me. She handed me a red card.
I went over and examined the machines. I had seen nothing like them before. They were more disorienting than walking on the sidewalk in the dark. I looked at the woman next to me. She was finishing her copying. "How does this work.'^" I asked her. She looked at me and there was a moment of uncertainty. "I've never used a machine like this," I said, "How do they work.'^"
"Put the piece to be copied in here," she said, pointing to a large opening. She walked away.
I put the clipping from the newspaper in the slot. What do I do next.'^ I didn't have a clue. I began to feel emotional and ineffectual. I put the red piece of plastic in a slot. I pushed buttons at random. Suddenly the machine sprang to life and swished my clipping away. I lifted up a piece of metal on the other end of the machine. My clipping was lying there but no copy was to be found. I took the clipping and put it in my briefcase and walked out on to the street and went home. I can't explain why I didn't ask for help. Perhaps I was embarrassed at my sudden disability to solve minor problems. It was the first time I felt old, decrepit, and utterly useless.
On the way home, I had a peculiar feeling that the sidewalk wa-
LOSING MY MIND
vered every once in a while. At intersections I was careful to look in all directions. It was a walk in which I lost something I may never get back. For a few moments, I became lost in a world I no longer recognized. '^ as it surrealism or Alzheiemer's.-^ Is there any difference.^ It is possible I am alreadv past the point where I can recognize either one.
This is the first time I have lost my certainty and experienced a feeling of confusion and loss, and it is frightening. Am I reaching a new stage in my life with Alzheimer's.'^
lam here to mourn memory.
Although my body may still be sputtering along, the day will come when I can no longer write a clear sentence and tell a coherent stor-. That day will be the actual time of death. The person in me who lives on until natural death occurs is only a shadow left by the deadly laugh of Alzheimer's.
Due to the complex changes occurring in their brain, patients with Alzheimer's may see or hear things that have no basis in reality. Hallucinations come from within the brain and involve hearing, seeing, or feeling things that are not really there. For example, patients may see children plaving in the living room when no children exist.
Illusions differ from hallucinations because Alzheimer's patients are misinterpeting something that actually exists. Shadows on the wall mav look like people.
Delusions are persistent thoughts that Alzheimer's patients believe are true but in reality, are not. They may
be certain that someone is stealing from them, but this cannot be verified.
With all of the above symptoms, environmental adaptations may be helpful. However, if an Alzheimer's patient has
THOMAS DeBAGGIO
ongoing disturbing hallucinations, illusions, or delusions medical evaluation is important. These symptoms may be treated with the use of medication or with advice on specific behavior management techniques.
- home safety for the alzheimer's patient, Alzheimer's disease research center
One summer, when I was eight or nine years old, I built a tree fort in the woods behind the house. It was nothing elaborate, a few boards salvaged from a moving box discovered in streetside trash and dragged home. The tree fort was little more than a platform nailed to stout tree limbs with low wooden sides around it. A series of short boards nailed to the tree trunk served as a ladder.
I was proud of the tree fort and invited two of the grandchildren who visited across the street to come and see it. The two girls were about my age, one a bit older, the other younger. I was particularly attracted to the older girl. She was not like the girls at school or in the neighborhood. Her femininity had begun to bud.
The tree fort platform was up in the leaves and there were trees all around. The three of us sat in the leafy humidity of a hot afternoon and told stories about out lives and dreams. The platform was small and we were very close and the sweat was sweet and tantalizing. I turned and my arm accidentally brushed the older girl's young, hard breasts and something strong and pleasant happened to my body and for a moment I grew larger.
The three of us played together every day, sometimes holding hands, visiting all of my favorite sites: Tommy Marshall's fine stucco clubhouse, the railroad tracks, and the creek with its large beautiful rocks.
It was in this hot, dry summer I received my first young glimmer of the secrets women and men carried that made life both rich and mysterious. I concealed my new knowledge of these things from my parents.
LOSING MY MIND
Doctors who treat Alzheimer's patients have the world's most thankless job. Unlike other doctors, physicians caring for those suffering from Alzheimer's have virtually no way to care for their patients. As I write, there is virtually one useful pharmaceutical available and it can only slow the onslaught of the disease for a small number of fortunate patients. These brave doctors must watch their patients' minds wither and their bodies become helpless. Sympathy and hope is almost their only tool and many of them use it well on the patient and his family. The suffering the family endures is herculean and is often the least recognized. Family members must watch as their loved one slowly disintegrates before their eyes, while they can do nothing to stop the process. For younger members of such families, there is an even greater fear—that they carry the damaged gene that triggers Alzheimer's and it will suddenly spring into action, energizing another cycle of slow, agonizing death. It is impossible to account for all the sorrow and ruined lives this disease has caused.
/ awake in the morning and realiie I have been crying in my sleep.
I am becoming tentative and unsure of myself. My handwriting is worse than it has ever been; I now have to print to read my writing. Instead of acquiring new knowledge, I am losing what has been stored. I regress, losing adult characteristics. I am still at the subde stages of this decline but I feel its discomfort.
As the '50S began, my father decided to trade the old Nash for a new Ford. I went with him to buy the car. There was dickering and eventually a price was set. My father pulled out his checkbook and began to write a check for the car. The salesman became perturbed. He thought my father wanted to finance the car. It was clear financing brought more money to the dealer.
Financing was not my father's way. He was old-fashioned; he saved the money and then made the purchase. As a lawyer, he knew
THOMAS DeBAGGIO
how to handle the salesman. My father was firm; they agreed on a price. We drove home that day in a new green Ford.
I dreamed last night of a future in which I lay in an institutional bed. I was alone in the dark room and I was beyond tears. I was tied to the bed with ropes and I was unable to move. My back and legs ached from the rigidity of my body. I lay there without memory, just a live carcass, no longer human. I was in the charnel house of dreams waiting for life to leak away and leave me still, no longer a burden.
/ cannot think of death without remembering the richness and intimacy of memory.
I look around inside myself and find Alzheimer's. I am not alone. My disease touches others, some whom I know well and others I hardly recognize. This comes as something of a revelation to me. I came on this discovery by writing a farewell essay in the plant catalog we send twice a year to about 12,000 customers. So many cards and letters came from people I hardly knew and they were all telling me how sorry they were to read of my Alzheimer's. And they told me how much I meant to them over the years. I was surprised and deeply moved.
At the same time garden friends were cheering me, I realized those closest to me, Joyce and Francesco, were hurt in ways I cannot know or understand. Both of them are hesitant to reveal their inner selves and unburden their memories of the sorrow, pain, and anger. They are holding their emotions in the secret places of their hearts where silence becomes comfort. Of course, they are angry at me. I am screwing up their lives and dreams. Joyce deferred so many dreams in deference to me. She has in this decade alone suffered through the slow deaths of her parents and gone through screaming nights of pain and confusion with her taciturn mother. And then had to deal with the chaotic aftermath with secret tears. And just when things were looking better Ol' Mr. Alzheimer's hit
[20
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me. No wonder her creativity has gone sour and her desire to create beauty is crippled.
Francesco, a bright man with a rich mind, is approaching his forties, and he is bowled over with secret anxiety over whether he carries the genes tor Alzheimer's inherited from me. This is not the way any of us dreamed our lives. I am the luckiest of this threesome because I have found a way to use my frailties and illness to create a story that others will read and, perhaps, act on. I can open my heart and touch others to expand their lives and enrich their minds with human emotion. I am afraid we are so hurt and scared we fill ourselves with secrets to protect what is left of ourselves.
I can only guess what Joyce and Francesco are going through and it is probably not good for me to write these words to others, but they will have the opportunity to revise and extend their remarks before you read this. Alzheimer's hit them as surely as it has hit me. They are reluctant to reveal their pain and fear to me but every time they see me or talk to me they must be reminded of their o^n sorrow and fear. Although we try to avoid talking about Alzheimer's, I know it is on the edge of their thoughts everv dav, as it is mine.
Now I am asking them to do the impossible, join me on National Public Radio with Noah Adams and, with me, bleed their secret emotions in public. I love them so for acceding to this ordeal for me and for others suffering from Alzheimer's so that their suffering and confusion can be seen and named. It is in this way I hope to liberate my family from the noose I put around our lives and emotions. I have not forgotten it could also destroy us.
We try to block our fears and sorrow, hiding them in places we never go, hoping they are sequestered well enough to keep them from eating us alive. No matter how carefully we handle all this, when I die, pan of them will die too. If it works as I hope, they will also find themselves reborn and reinvigorated.
The only time I feel alive now is when I am writing, under the spell of work and memories.
THOMAS DeBAGGIO
Walter Reed elementary school in Westover expanded rapidly after the war and I found myself in the fourth grade and in a very unlikely place, a Baptist Church annex the county rented until a new school was built. It was here a small generation learned of fear and I lost myself in art.
I spent much of my time i
n class drawing cartoon strips of adventurers flying to Mars and the moon. Spelling was my least favorite subject and I dreaded the Friday test days, although my father worked hard Thursday after dinner, helping me prepare for the exam.
One Friday before the spelling test, a teacher hurried into the room and talked quietly to my teacher. I heard them talking about a man with a gun who was hunting his wife who had come to see the minister at the church about marital problems. The police were already on the scene and they wanted the children out of the schoolrooms and out in the open far away from the delicate confrontation in the church basement next door.
My class and all the others in the makeshift school were marched on the flat, dirt recess playground. We stood in long, quiet lines with fear and giggles flashing across our faces. Soon the man with the gun was taken away and we returned shivering to our classrooms in the church annex.
Moments of death float in my memory. My mother sucking a sliver of ice, struggling to look at me and smile as her last days approached in the tiny hospital in Eldora. In the same hospital, I watched Grandma DeBaggio die in the same ignominious way. Every time I entered the small room she shared, she struggled to raise her head and called to me in a stuttering iambic pentameter, "Tom, Tom, Tom," as if it were a chant to protect her, or was it me she sheltered with a charmed dirge.'^ But the last breath came to her, too. There was no more chant; even my name could not protect her at 104.
^.
LOSING MY MIND
Tammy and Francesco found a wonderful little restaurant in Manassas and they took us there. I had remembered Manassas from my high-school days when it was talked about as one of the last best places to buy moonshine. Now it has changed; it is just another bedroom community. The restaurant is wedged into a strip shopping center. Panino is a perfect name for it and it was like walking into a Fellini movie, complete with a dwarf serving tables and high-school students on prom night. The food was lighthearted and was the equal of that of a fine little trattoria.
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