Air raid drills were regular routines while I was in public school in the Baptist Church annex. There was claustrophobic fear, stirred by the government, that Russia was going to bomb the United States, especially Washington, DC, and its environs. At school we practiced getting under our desks. Even the smallest students wondered how the desk was going to protect us from radioactive rain and all the other fears.
At home my parents took no precautions, but the memory of the last war was still raw and real. My father told the family one night at dinner he might have to go to a secret place in the Blue Ridge Mountains where there were underground offices to house the government and operate during any wartime emergency.
Temptation is everywhere, even when you are dying.
If there is any question that Homo sapiens are animals, consider what happens to them on cloudy days. I am sitting at my desk on the second day of gray overcast and rain. I am dry and warm and the lights are on in the room but there is an unnerving feeling inside me that prevents me from doing anything. I sit and dream, a stance known to many of us on days like this. I am empty and I cannot get cranked up. My mind crawls around in the dark, unable to cough up inspiration, and I sit here waiting for something to energize me. I will have to make the best of it and wait for the sun to
THOMAS DeBAGGIO
shine to lift my spirit. I think I can make it down to the kitchen for a sandwich; I am already over an hour late and my stomach is talking to me.
The reader is cautioned that memory often does not distinguish between fiction and the facts that have been lovingly remembered.
Imagination is surely an important branch of memory, especially when it comes to finding things. I have a good idea where the newspapers are in the morning (under the car) because I have been looking for them for years. Fortunately, I can still find my closets and I know where the chest of drawers is located. The kitchen and the living room are no problem.
Yet half my life seems to be spent searching for things. I don't want to say the objects I am trying to find have been lost or misplaced. I simply can't remember where any transient object might be. As soon as I put down a hat or a shirt in an unusual place, it becomes "lost." Half my life now seems to be spent looking for things. It often seems that Alzheimer's is making all kinds of things disappear.
This is going to be a great Christmas. I am not certain I remember where I hid all the presents. If I am going to make any sense of my life I must construct small dump sites around the house. I never realized how much disorder meant until the frustrations of Alzheimer's became mine.
It is common to have impairment of the senses in Alzheimer's disease. The ability for patients to interpret what they see, hear, taste, feel or smell declines or changes even though the sense organs may still be intact. The Alzheimer's patient should be periodically evaluated by a physician for any changes in the senses that may be correctable through glasses, dentures, hearing aids or other treatments.
LOSING MY MIND
Patients may also experience a number of changes in visual abilities. For example, "visual agnosia" is a condition in which patients lose the ability to comprehend visual images. Although there is physically nothing wrong with the eyes, Alzheimer's patients may no longer be able to accurately interpret what they see due to changes in the brain. Also, their sense of perception and depth may be altered. These changes can cause safety concerns.
A loss or decrease in smell often accompanies Alzheimer's disease. Patients may experience loss of sensation or may no longer be able to interpret feelings of heat, cold or discomfort. They may also lose their sense of taste. As their judgment declines they also may place dangerous or inappropriate things in their mouths. People with Alzheimer's may have normal hearing, but they may lose the ability to accurately interpret what they hear. This may result in confusion or over-stimulation.
- home safety for the alzheimer's patient^ Alzheimer's disease research center
How long is my memory? Joyce got up and switched the television channel. I didnt notice the change for jive minutes when I realised the story didn 't seem to hang together. I said to her, ''This story doesn 't make any sense. What happened to the guy driving the car?'' I could remember but I couldn't remember.
Ten to fifteen percent of the words I write are misspelled in crazy ways. Watching my spelling, especially when it goes out of control, is a way I keep tabs on Ol' Alzheimer's. The disease produces a literary trash pile of butchered words, once recognizable but now arranged in combinations neither I nor the spell-checker has ever seen. I have watched this syllabic exercise for months and I use it as a fingerprint of what is happening in my brain. The spawn of this de-
THOMAS DeBAGGIO
struction is growing in size and it frightens me. I may not have much time left to tinker with words. Is losing my ability to read next.'^
There are still a lot of children dressed as adults in politics.
When my family moved to 9th Street in Arlington, earning money after school became my foremost goal. Delivering newspapers intrigued me. There were four daily newspapers in Washington then, the Washington Post^ the Washington Times-Herald., the Evening Star., and the Washington Daily News. I wasn't old enough to deliver these daily papers; boys in junior and senior high school had those routes. I broke in with shoppers, free papers delivered by youngsters, but hated the dogs that ran after me.
My first real newspaper delivery job was with the Washington Daily News^ an afternoon tabloid with no weekend editions. Each subscriber paid weekly, and then I paid the company. With twenty customers scattered up to half a mile away, I rode my bike to shorten delivery time.
I delivered the Evening Star for a while, but my goal was to work for the Washington Post, which had absorbed the Times-Herald. I often walked the route with the carrier in the early-morning darkness. When the regular carrier went to college, I took the large route and kept it for four years. The money I earned helped me to make a down payment on a house when I was in high school. My father and I bought the house to rent with the idea I might need such a dwelling later.
It is too early for farewells. It is time for memories and celebrations.
I am losing my ability to write. I see the signs of verbal atrophy every day. Cut my legs off but don't take away my ability to think, dream, and write. It is too late to reconstruct the dreams of my youth or create a new life. I am staring a monster in the face.
LOSING MY MIND
Silly prejudices of history haunt us through religion.
I want to tear your heart out so you can see the blood drip in my hands; then I'll put everything back so that you will bring sensitivity to your mind and think with your heart better than with your brain.
Mom, I know what death looks like. I watched you cling to life in Eldora on that teary hospital bed, a chip of ice in your mouth, dying slowly as you gave birth to a cancerous tumor. I know now how alone and vulnerable you must have felt, even in my presence, while you waited to die. Now it is my turn to begin the wait and listen in frightened silence as my brain murders my sense and destroys my body.
If children dream of the perfect aunt, my Nell Smith was made for the job. She worked in a large clothing store in Washington, DC, and wrote a weekly commentary for a local paper in her hometown of Newton, Iowa. We were related through Grandma DeBaggio, but tracing her genealogy was tricky. Aunt Nell's lineage was carefully outlined many times, but always had to be explained again—it was less difficult tracing our relationship to President Lincoln. Only in America could a family of northern Italian peasants worm its genealogical way close to a famous president.
Visits from Aunt Nell were rare but memorable because she brought Mary Ann and me paper tickets of Sin-Sin, tiny licorice-flavored wafers knocked out of a hole of a small cardboard container. I was never sure whether my parents approved of these little presents. There was a vibrancy about Aunt Nell that was accentuated by her often flamboyant clothes and hair color, unlike any tint in the natural world.
&n
bsp; Eventually, Aunt Nell retired from her job as a clothing store buyer and returned to Iowa. She took a job with one of her sons and bicycled to work every day for years longer than anybody thought
THOMAS DeBAGGIO
was possible for a woman her age. She was the first writer I knew personally, but her books were filled with otherworldly encounters and spirits.
Even in this time of failing memory, I am happy to stay closeted in my mind and bring up broken memories to paw over.
Yesterday became a test of memory early in the morning, usually my best time of day. I set off in the car to pick up Briann, my niece, who needed a ride to the airport.
I had a little trouble picking out the way to her apartment on the map in my brain but I was confident of my ability to get there because it was familiar territory. I made all the right turns and recognized her place immediately. A taxi was in front of her apartment and I pulled up behind him while a young woman got in and the driver stowed her bags in the trunk.
I continued to wait on the silent street but after a few minutes I was overcome with anxiety and bewilderment. I was no longer certain I was at the proper place. My mind was flooded with images of another place nearby where she might be. I was uncertain whether this was the place I should be. Maybe this was where she lived last year and that is why she was not waiting for me.
I drove off to find the place she lived last year and eventually located it, but Briann wasn't there either. I was in careful confusion and nearly went home but first drove back to the first place I had been, to see if Briann was out on the steps with her bags. My mind was agitated and whirling out of control, my heart pounding.
I turned on her street again. As I got closer to her apartment I saw Briann and I was relieved and happy I had not gone home. The rest of the trip to the airport was uneventful, except for the subtle, aching sense of uncertainty that moves easily through me now. I saw my future and realized I was not going to be able to drive a car much longer. The crippling effects of Alzheimer's were closing in on me.
LOSING MY MIND
I had an uncomplicated childhood affinity for railroads, especially those little electric trains puffing circles around Christmas trees. In a world of diesel, I imagined coal-fired boilers. My dreams were stoked by the size and power of the engine legitimized on a small scale by the men I saw at the annual model railroad display at Union Station in Washington, DC.
My love affair began with the first train set under the Christmas tree in the house on 14th Street and ended with a huge layout with trapdoors in the basement of the house on 9th Street. In between I became infatuated with small HO model trains, so much so I tried to build rolling stock from kits. One summer I bicycled to the hobby shop in Ballston and purchased a small model railroad coal-fired switch engine with money I earned from the paper route. It was an unpainted silver shell without electric motor, but it represented a past time of coal-fired engines and a present rich in dreams for a young boy.
My father was upset when he discovered my purchase. He told me to return the switch engine and to save my money instead of spending it on toys. I hid the piece of cast metal and told my father it had been returned. It was the first real break with him over the control of my life. In a small way, I started my own life the day I first lied to my father.
Do you get your hands dirty in your dreams?
Yesterday I learned what it was like to have a rare and wonderful doctor. Colleen Blanchfield is a specialist in neurology and psychiatry, and Alzheimer's brought us, after several stumbles, to her special skills in healing. She called the family together for an occasion necessary and a little peculiar. It was to be a discussion of our future with Alzheimer's. The disease struck me but it was not just mine; it touched the entire family.
THOMAS DeBAGGIO
I learned some time ago what happens when you begin to tell family members about the diagnosis. My sister and cousins began to worry, however tentatively, that they, too, might be in line for a visit from or Mr. Alzheimer's. Their antennae began to twitch even though we were nearly a continent apart.
Tammy and Francesco were waiting for Joyce and me when we arrived. As usual there was a long wait before Colleen finished an earlier patient and we got her full attention. She surprised me when she started the meeting by asking each of us what we thought we could get from such a forum. None of us were prepared for the question or had a clear idea what we were about to go through. I told her I didn't think I'd get anything out of it. She said that was okay.
We soon learned the meeting was to focus on living with someone with Alzheimer's, and the additional burdens on the family the disease brings. She quickly outlined a future in which I needed their help, a type of help for which they may not be prepared. Joyce ended up to be the person Colleen wanted to prepare. Tammy and Francesco had ancillary tasks looking after me when I visited them at the farm. Joyce had the largest burden but she was already carrying heavy emotional baggage, the deaths in the last six years of her father and mother. Her mother's death was particularly difficult and Joyce was required to spend days and nights with a woman who was difficult and demanding at best, paranoid at worst. Joyce was still trying to adjust to her parents' deaths when my Alzheimer's slapped her, a blow she accepted but it sent her reeling emotionally.
Colleen was animated, throwing her big mane of blond hair every which way. This was doctoring unlike any I had seen, healing and probing at the same time. Without describing the details, she was preparing us for the pain and bewilderment that lie ahead.
The meeting came to an end with Colleen asking Joyce to write down her priorities. It was then I realized how important it is to prepare not only yourself, but those around you, and how useful it is to have a wise earth mother goddess to help.
LOSING MY MIND
Details slather off and are tucked away in the dark litter of Aliheimer's.
On warm spring evenings my family and I sat on the back porch eating dinner. We listened to the high-pitched singing of thousands of little frogs called peepers. This serenade took place every day and night and it was not for human ears alone; it was a carefully orchestrated mating ritual devised by nature. The sound of the peepers was so continuous and enveloping that I imagined I was breathing their song.
The fallow field, often flooded by a creek running through it, was opposite the Washington and Old Dominion Railroad work station. A grassy field ran up a hill topped by a stately white house. The marshy meadow was used, with and without peepers, as a home for somnolent cows. My friends and I spent wet, dirty after-school hours collecting tiny peeper eggs with their gelatinous outer coating and a dark black center full of waiting life. I scooped them up into jars along with the dirty water. I took these jars home and watched the little peeps hatch with the care and wonder of a scientist.
There was a time, not long ago, when I seriously considered throwing all my books away. They became a reminder of my failure as a writer. Fortunately, they were rescued by Joyce, who put up cabinets for the books on the walls in a spare room. Now, with death in sight, I find it comforting to go into the room with books on the walls and pick up a book by Samuel Beckett or some other wise man of words and sorrow, and commiserate with the world. It is my way of preparing for death.
I used to sit while my brain entertained me. Ideas flew about and stories formed and laughter remained. A large array of the past and present were combined to create follies that kept me happy for hours. Now the show is over, hardly a bard exists in my memory.
THOMAS DeBAGGIO
This book describes an ancient time in the twentieth century.
My father had a closely trimmed mustache above his upper lip. It resembled the mustache of his father. As the two men aged, their black mustaches gradually whitened and became smaller and smaller.
I have varied slightly the steps in the cultivation of facial hair. Instead of a mustache I began with a beard. This was no ordinary beard but a statement of freedom and independence. It was a flamboyant black bear
d with a wide mustache that curls on its ends. As with both my father and grandfather, age manicured my facial hair until today I have a fuzzy upper lip with thick gray hairs. I have come to accept the color gray in my hair and on my face but I have not yet come to embrace its meaning.
My son, Francesco, has followed the hair-growing tradition with a flair of his own. Instead of cultivating upper-lip hair, he favored working with his scalp. He has a beautiful head of black hair falling below his shoulders when it is not tied into a ponytail. It appears he, too, is following the family tradition. When Joyce and I visited him five years ago when he lived in California, his hair hung below his waist.
It is through the growth and distribution of hair that our clan measures time.
It was an archaic time, the fifties, full of trembling, confusion, and misunderstandings. It was also the time during which I discovered the complexity of my body and began to look at girls in a new and secret way.
In those days junior high school was more than a hiatus between grammar school and high school. It was the first step into adulthood. Growing out of elementary school was a large achievement in small lives and it made my friends and me proud to be there. Growing old, even in those young days, had a scent of hope and regret that made stomachs unsetded every day.
Swanson Junior High School was more complicated than any
LOSING MY MIND
place I had been. It was large and there were two floors of classrooms. There was a cafeteria in which to eat lunch, and a large gym. It encompassed a time and place of hesitancy, when dancing with girls was desired and reviled at the same time.
Instead of staying in a single room students moved from room to room, studying diverse subjects with different teachers. There were books for each class and homework meant more than memorizing spelling words for a Friday test. Students were no longer treated as children, although most still acted that way.
Losing My Mind Page 13
