LEARN, LISTEN, TEACH: Avery Becklenberg

LEARN, LISTEN, TEACH: LEARN, LISTEN, TEACH:

THE LIFE OF A SELF

by Avery Becklenberg

WRIT 1633: Advanced Writing and Research | Professor John Tiedemann

AT 4:40 ON A SATURDAY NIGHT IN NOVEMBER OF 2007, May stood, with bare feet, on cold sand. White foam greeted the tips of her toes as waves rolled in and out. Cold air flooded the beach, and wind blew briskly by, tangling her long blonde hair and blowing her brown patterned skirt wildly in all directions. As the sun sank low in the sky, the 7-year-old girl begged to go home, but her mother refused her requests because May’s grandmother had yet to arrive. They had planned to meet at 4:30 to take a family picture, featuring all three living generations of the family, but May’s visiting grandmother, Mary Ann, was not in sight, and they could not take the picture without her.

Mary Ann had been visiting her son’s family, May’s family, in the small ocean-side town of Pacific Grove, California for about three weeks. When Heidi, Mary Ann’s daughter-in-law, suggested meeting at a nearby beach for a sunset picture to commemorate her trip, Mary Ann enthusiastically agreed. Mary Ann frequently visited that beach, and she had walked there alone countless times before, so when she did not arrive on time for the picture, Heidi began to worry. The setting sun neared the horizon, and if Mary Ann did not arrive soon, they would have to reschedule the picture.

The sun set at 4:52 that night, and Mary Ann had yet to appear. The beach plunged into darkness, so the family decided to go look

Courtesy Becklenberg Family on their wedding day (right) Mary Ann and her husband, John, (left) Mary Ann with her husband, John

for her. May and her family loaded into the car and drove slowly along the coast, looking for signs of their loved one. After driving about a mile in anxious silence, Heidi’s eyes rested upon the silhouette of woman shivering in the cold on the side of the road. Realizing it was Mary Ann, carrying her favorite purse and wearing gold earrings and red lipstick, they pulled over, stopped the car, and motioned for her to climb in.

Mary Ann reluctantly approached the car, a concerned, bewildered look in her eyes. She sat down in the vehicle, and Heidi began to ask questions.

“Are you alright?” she exclaimed, expressing her concern. “Where were you? What happened? Was I unclear about which beach we went to?”

Mary Ann, clearly confused but relieved to have found her family, seemed to believe that her family, not herself, had gotten lost; she did not realize that the section of beach where she had waited was not their usual meeting spot.

Why had she gotten lost? Where was she trying to go?

Why did she decide to go on a walk at night? Why had

she been all alone? The details escaped her, as they

had in a few other situations over the past months.

The family rode back to Mary Ann’s cottage in silence. May, still bitter that she was forced to stand so long on the cold beach, did not pay much attention to her grandmother’s distraction and distress.

When Mary Ann woke up the next morning, her mind traveled back to the events of the night before. As she tidied the cottage’s small kitchen, she remembered only bits and pieces of her terrifying moments alone on the beach. Why had she gotten lost? Where was she trying to go? Why did she decide to go on a walk at night? Why had she been all alone? The details escaped her, as they had in a few other situations over the past months. She began to suspect that her frequent lapses of memory were not simply signs of old age; maybe something bigger was wrong.

When Mary Ann returned to her home in Chicago a week later, she and her husband decided the time had come to seek professional help. Their decision mirrored one made by another relatively young woman, Auguste Deter, and her husband, over one hundred years earlier, in 1901. At only fifty years old, Auguste began to act strangely. She became jealous and resentful of her husband, believing that he was having an affair, despite his repeated denials. She developed problems sleeping, speaking, reading and writing. These symptoms frightened her husband even more than her irrational accusations, as she had long been a literate, socially engaged woman. Her symptoms continued to progress, and she became fearful, paranoid, and aggressive, seemingly losing herself in hysteria. Eventually, she behaved so erratically, unpredictably, and dangerously that her husband could no longer handle her alone, so he sought to admit her to a psychiatric hospital at the young age of 51 (Ellison).

Upon her arrival in the hospital, Auguste and her husband met a young doctor named Alois Alzheimer. Alzheimer examined Auguste and found that she demonstrated inconsistencies in her basic cognitive functions. For example, when asked her name, she responded ‘Auguste,’ but when asked her husband’s name, she gave her own name again. Similarly, while she could recognize and name

some objects, “like a pencil, a key, a cigar, when asked what she was eating she would reply ‘spinach’ even though she was eating pork” (American Senior Communities). The results of this examination puzzled Alzheimer. Auguste demonstrated all the symptoms of dementia, but the doctor’s previous learning informed him that his patient was far too young to truly have the disorder commonly ascribed to elderly individuals, usually over sixty-five years old (American Senior Communities). Ultimately, Alzheimer diagnosed Auguste with “presenile dementia” (as opposed to the more typical “senile dementia” (Ellison).

Auguste spent her final years in the mental hospital, finally passing away on April 8, 1906, at 55 years old. After her death, Alzheimer performed a biopsy on his deceased patient’s brain. What he found surprised him: “her brain revealed abnormalities and extensive atrophy in the cortex—the outer layer that is responsible for memory, language, judgment and thought in general. While these findings were not unusual, it was Deter’s age that made them remarkable. Previously, these abnormalities were seen only in patients in their seventies” (American Senior Communities). It appeared that Auguste had sustained the kind of mental deterioration associated with senile dementia, but because of her young age, her doctor did not have a name for her condition. Had Auguste lived today, or even in as early as the 1950s, she would have been diagnosed with early-onset Alzheimer’s disease.

Mary Ann received that very diagnosis—the one that Auguste died before receiving and that made Alois Alzheimer famous. She demonstrated some of the same symptoms as Auguste had onehundred-ten years before her, though Mary Ann and her family hoped for a more positive prognosis.

In the following months, Mary Ann, her husband John, their three children, and their families attempted to comprehend the surprising, devastating news that was her diagnosis. Alzheimer’s disease has no known cure, and, as evidenced by Auguste, the outlook for a diagnosed individual, especially one so young, is grim.

Of course, at eight years old, May was not included in heavy conversations about the future of her beloved grandmother with whom she dressed up, put on plays, and went to the park. In fact, May was not aware of any bad news or change until the following summer, June of 2008, when she attended a family wedding and overheard her dad and aunts discussing her grandmother. When they realized May was listening, they quickly explained to her that “Gran” was sick, and that sometimes she had trouble remembering certain things. May had not noticed anything wrong with Gran (who still appeared well dressed and competent, with nice earrings and lipstick in hand), but she heard the gravity of her father’s voice and recognized something serious going on.

That night at the wedding, May listened to Gran tell her a story about a horse named Cha-Cha that she had owned in her childhood. Gran told the same story three times.

Mary Ann’s story about the horse named

Mary Ann and her horse, Cha-Cha Courtesy Becklenberg Family

Cha-Cha went something like this: as a child, she lived with her four siblings in a large house near Chicago’s North Shore, where her parents socialized at golf courses and cocktail lounges. Though they lived in the city, her father promised her that, if ever the family owned enough land, Mary Ann could have a pet pony. Of course, at the time that he made this promise, Mary Ann’s father did not believe they would ever have such a property. However, when Mary Ann was twelve, her family moved out of the city, to Ohio, to a home on many acres of land: enough space to keep a horse. Her father kept his promise, and Mary Ann got the horse of which she had always dreamt.

May learned a lot about Cha-Cha, and about other details of Mary Ann’s childhood as she descended into her illness. Each time she saw her grandmother, she heard the same stories over and over. This behavior—recounting memories from childhood—is generally expected of individuals with Alzheimer’s disease. They lose their most recent memories along with their ability to make new memories, and their understandings of the world start to rely more heavily on childhood experiences. It seems as though they revert to a previous ‘self,’ one that is more childlike.

The documentary 56 Up comments on the similarities and differences between a person’s “self” in childhood and adulthood and on the impact that life experiences can have on a person’s perception of their self. The film follows the lives of eight individuals from the time they turn seven until they reach 56, tracking their personal development and insights. One of the more poignant moments in the film occurs when a 56-year-old woman named Lynn comments that “when you look at the 7-year-old us, it’s hard to believe it’s us” (Apted et al.). Lynn’s words fall like stones straight into the hearts of people who feel dissociated from their childlike selves. They imply that people change over the courses of their lives, and they strike a chord with individuals who have lost touch with their childlike nature and innocence.

In the film, Lynn’s comments imply that the reason she no longer identifies with her young self, the reason she cannot believe that it’s her, is that she has learned more about life in the past 49 years than her seven-year-old self knew. Her life experiences and the things she has learned from them about happiness, success, failure, grief, disappointment, and everything in between, shape the way she views herself. Middle-aged Lynn knows much more, simply because she has learned from her experiences. Just like Lynn, Mary Ann learned from the experiences that she accumulated over the course of her life, and those lessons shaped her ‘self.’ Her experiences taught her to love her family, to succeed in her career, and to live passionately.

But when Mary Ann developed Alzheimer’s disease, her brain stopped allowing her to learn. She stopped relating to the present, and she ceased to remember her most recent experiences, instead recounting stories from her childhood, like the one about Cha-Cha the horse. About the progression of her disease, Mary Ann once said, “I began to realize that I wasn’t the gal I used to be. It was different inside my head” (PBS). Though Mary Ann’s cognition and ability to learn from present experiences

Courtesy Becklenberg Family

Halloween, 2006, in Pacific Grove, California

(right) Mary Ann with her grandchildren on

(left) Mary Ann’s first communion in 1951

Mary Ann and her husband, John. This picture appeared in magazines and on websites. Courtesy Becklenberg Family

decreased rapidly, she retained many of the qualities that had always made her unique, including her childlike sense of wonder, exploration, and fun. She sang out loud. She played games at the park. She ran around. She wore silly costumes, dressing up for Halloween with face paint and all. She loved her children and grandchildren, and she always carried herself with poise and dignity.

In 2008, shortly after her diagnosis, Mary Ann’s health began to decline obviously. She found herself forgetting important details and neglecting tasks at work, so she left her job as a social worker and hospice care director. With no cure for Alzheimer’s in sight, she recognized that her disease would inevitably and quickly consume her mind, and she opted to make the most of her situation. Mary Ann, a perpetually bold, gregarious, classy, put-together woman, decided that, rather than give in to the degradation of her brilliant mind, she would embrace the unwanted disease by telling her story and teaching others while she still could.

Her brave decision to teach, even as she teetered on the edge of the self that she had always known, initiated a new era of simultaneous hope and decay in Mary Ann’s life. She realized that, though Alzheimer’s would ultimately claim her life, the time for that had not yet come. In the meantime, she had an important story to tell. She began speaking out about her experience with Alzheimer’s as she, her husband, and her family learned to cope with their new reality. She started her mission by traveling to speak at conventions and in discussions, both locally and around the country, as a panelist for the National Alzheimer’s Association. Then, as she became a figurehead for the organization, her story spread to local newspapers along with USA Today and Time Magazine. She even appeared in a PBS documentary, Life Part Two, and in a series of other, smaller recorded interviews. Even today, more than two years after her death, Chicago-area publications still mention Mary Ann.

When Mary Ann began speaking, teaching people across the nation about aging and Alzheimer’s disease, she already had the disease. It had already taken hold in her brain, tearing bits and pieces of her memory away in a manner similar to that of a crazed shopper tearing merchandise off of department store shelves on black Friday. At this point, Mary Ann frequently repeated stories about Cha-Cha, and she struggled to make sense of her

Her brave decision to teach, even as she teetered

on the edge of the self that she had always known,

initiated a new era of simultaneous hope and decay in

Mary Ann’s life. She realized that, though Alzheimer’s

would ultimately claim her life, the time for that had

not yet come. In the meantime, she had an important

story to tell.

surroundings or learn from present experiences. Nevertheless, she continued to present herself in front of audiences with pride, class, and dignity, wearing bright red lipstick and her favorite gold earrings, carrying her favorite handbags wherever she went. She believed she had something to teach the world.

Mary Ann believed correctly; she did have lessons to teach. Her experience with Alzheimer’s disease gave her the unique ability to speak about what it feels like to lose touch with the person she’d always been: something that very few people are brave and experienced enough to discuss. If one listens only to a person like Lynn, whose comments

Courtesy Becklenberg Family Mary Ann at a family reunion.

suggest that an individual’s ‘self’ only develops as they learn from experiences, then they would discount the fact that the lessons an individual can teach also contribute to who they are. Even as Mary Ann lost the capacity to learn, she taught brilliantly. Her story proves that everyone has something to teach, and the lessons they teach to others define their ‘self’ just as much as the lessons they learn. Mary Ann’s condition further declined, and her speaking engagements ended five years after they began, in 2013. That summer, she and her husband took their last trip together, flying across the country to visit May’s family and celebrate the fourth of July. May had seen her grandmother at least once a year since her diagnosis, but on this trip, something was different. While Gran still wore bright red lipstick and gold hoop earrings, she could no longer

Throughout history and in modern culture, elderly

individuals, especially those afflicted with Alzheimer’s

disease and other mental illnesses, have suffered the

most at the hands of the negative, ageist biases held

by younger people in Western societies.

form complete sentences; she frequently began a phrase, mumbled some words, then fell silent. She often stood in the kitchen holding a rag, but she no longer knew to wipe off the counter tops. She could not be trusted to walk into a room by herself or stroll around the neighborhood as she used to. May recognized that something big had happened to Gran, but what had happened exactly? How could such a change occur? Only a few months earlier, she maintained almost full mental and physical capacity and spoke publicly about her condition. Now she sprayed the bathroom sink with sunscreen instead of cleaning solution.

After their trip, life seemed to change for Mary Ann and her husband. They knew that Alzheimer’s had truly taken over their lives, and little could be done about it. Mary Ann withdrew from conversations, began smoking cigarettes, and instead of obsessively cleaning, she sat in her messy kitchen, tearing up paper towels for hours on end. By 2016, the decision to move Mary Ann into hospice care (the same hospice program that she herself had managed in her years as a social worker) was a clear one.

In the words of Ronni Bennett, a 68-year-old blogger, “one of the biggest changes in old age is not within ourselves as much as in how other, mostly younger, people treat us. We are dismissed, ignored and made invisible based solely on our appearance. Put the same words, thoughts and opinions we have in a younger body and the world pays attention.” Bennett’s sentiments describe the phenomenon commonly referred to as ‘ageism,’ our habit of stereotyping people, of discriminating against them on the basis of their age (World Health Organization). Throughout history and in modern culture, elderly individuals, especially those afflicted with Alzheimer’s disease and other mental illnesses, have suffered the most at the hands of the negative, ageist biases held by younger people in Western societies.

The almshouses, workhouses, and charitable homes of Britain and the United States in the early 20 th century exemplify discrimination and poor treatment of elderly people in the Western world. According to The Encyclopaedia Britannica, “Dating to colonial days, the almshouse was used as a dumping ground for the mentally ill, the epileptic,

the mentally retarded, the blind, the deaf and dumb, the crippled, the tuberculous, and the destitute aged, as well as for vagrants, petty criminals, prostitutes, unmarried mothers, and abandoned and neglected children.” Needless to say, life in an almshouse was not pleasant. While almshouses, workhouses, and charitable homes offered adequate shelter for their residents—a mélange of people rejected from society—they were often unclean, unsafe, infected with illness, and lacking the medical and psychological care required by their inhabitants. It is as a result of ageism in Western society that healthy, able-bodied, elderly individuals who had no family willing to care for them were sent to almshouses instead of safer homes.

While able-bodied, healthy seniors often found themselves in almshouses and other institutions, “old people with dementia were [also] admitted to lunatic asylums, workhouses, and charitable homes but were not welcome there” (Andrews). In fact, old people, especially the mentally-ill, were, and still are, seen as “intractable burdens” on society (Andrews). Eventually, at the beginning of the 20 th century, almshouses began to fall out of favor. However, unstable, ‘burdensome’ elderly people still required care. When state governments began to assume the cost of care for mentally-ill seniors, younger people still did not wish to take care of the elderly; thus, government-supported mental hospitals and institutions gained popularity, replacing traditional almshouses. While hospitalization sounds like a safer solution for care than almshouses, mental hospitals proved to be almost as neglectful of old people with dementia as preceding institutions. For example, between about 1900 and 1950, social workers “saw little use in providing casework to older adults” (Lacey 104). Professionals believed that mentally-ill old people had no hope for recovery, so they were sent to the “back wards” of mental hospitals, “in which the task was defined as the provision of humane custodial care,” not as increasing quality of life or improving health (Lacey 109). Not only were elderly people sent away without proper care, they often received treatments in the form of experimental new drugs that caused more harm than good.

Eventually, in the 1950s, the burden of caring for the “demented aged” grew too heavy for mental hospitals, which had become warehouses for this population, to bear (Lacey 108). A movement to deinstitutionalize mentally-ill patients began in 1955; efforts to send current patients home and to decrease new admittances commenced. In 1965, the de-institutionalization movement encountered a turning point with the enactment of Medicare and Medicaid legislation. According to Hugh Richard Slotten, Medicare “made federal money available for nursing-home care [and] led to a massive shift of older patients with dementia out of public psychiatric hospitals.” Since the establishment of Medicare and the nation-wide shift towards favoring nursing homes over institutions, the former have become mainstream fixtures in society. No longer do elderly individuals, especially those with dementia, Alzheimer’s, or other mental illness receive life-sentences to miserable almshouses and institutions. Instead, they frequently find themselves in nursing homes and hospice centers that look more like warm, inviting houses than barren hospitals. These nursing homes offer therapeutic treatments from social workers, gerontologists, and other doctors who aim to make their residents’ last years comfortable.

Ageism, as Ronni Bennett argues, still exists. Elderly people, especially those with dementia and Alzheimer’s disease, continue to feel ignored,

invisible, and alienated from the younger people with whom they interact. Their feelings of alienation surely increase when they are placed in senior living facilities, even in nice facilities instead of almshouses or mental hospitals. Nursing homes, hospitalization of the elderly, and ageism as described by Bennett establish and maintain a wide gap between the young and the old. To bridge this gap requires teachers like Mary Ann, who are unafraid to speak out, and who can bring light to questions of mortality that all people, not just the elderly, consider.

In Life Part Two, a PBS documentary, Mary Ann sagely states that “to know that [I] won’t bring this self to the end-stage of [my] life, that I won’t be clear about what’s happening to me, it’s the ultimate loss.” According to the Alzheimer’s Association, one in three people will die with some form of Alzheimer’s disease or dementia. Even people who do not develop Alzheimer’s disease or dementia will age, and therefore, everyone, at some point in their life, is at risk of experiencing the devastating feeling that they are losing their ‘self.’ By talking about this feeling, Mary Ann taught younger people, including May and her family, to humanize the elderly and to better understand the issue of mental deterioration. If young people choose to tuck elderly people who suffer from those hidden ailments away in institutions, ignoring their voices and the lessons they teach, then they miss an opportunity to consider the heartbreaking loss that they too may face one day.

When Mary Ann and other activists raise questions pertaining to the psychology and livelihood of both the young and the old, they teach valuable lessons about what it means to be human, and about how humans (including elderly ones) deserve to be treated. Just as Mary Ann used her Alzheimer’s disease to teach valuable lessons, all people have an equal capacity to share the things that make their human ‘self’ unique, and everyone deserves an audience of people willing to listen to the lessons they teach.

On July 5 th , 2016, May sat in a garden of flowers in full bloom with her dad and her Gran. Mary Ann’s eyes appeared to sink into her head as she stared straight ahead. She did not wear lipstick or earrings. She did not move or make any sounds. Butterflies flew around the garden, landing for a second upon a flower before moving on to the next, and the next, and the next. May and Jim spoke to Mary Ann about the Fourth of July holiday they had celebrated without her the day before at Mary Ann’s family home. They discussed their favorite memories at that house, the lessons they had learned there, the laughter they had shared, and Jim sang his mother a song. May held her grandmother’s hand.

When the song ended, May kissed Mary Ann on the cheek and said goodbye. That was the last time May saw her grandmother.

Mary Ann passed away on September 20 th , 2016, eight years after her diagnosis. Some might say that Alzheimer’s won, that Mary Ann lost her battle

Courtesy Becklenberg Family Mary Ann on the beach in California.

Mary Ann and her family on the beach in Pacific Grove, California, in November of 2007. Courtesy Becklenberg Family

and her ‘self’ because she passed away, but that is not the case. As May discovered in the months following her grandmother’s death, Mary Ann taught and inspired. She poured herself out for the world to see, even when she could no longer make sense of her world. She taught countless lessons and led the way for Alzheimer’s research. She advocated for and participated in clinical trials, accepted interviews, appeared on TV, in a PBS documentary, and in influential magazines. She rose to the challenge that her diagnosis posed, and she lived the last few years of her life with the same passionate, classy, and fast sense of “self” that she had always propagated. Alzheimer’s ruthlessly stole her ability to learn, but it never stole her ability to teach. Mary Ann remained Mary Ann, her true, beautiful self, even when learning new things became hard. She and her legacy will never stop teaching, as long as others are willing to learn.

WORKS CITED

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Avery Becklenberg is a second-year student majoring in international studies and communications, with minors in leadership studies and Spanish. While originally from California, Avery loves skiing, snowboarding, hiking, paddle boarding, and adventuring in the Colorado mountains. She isn’t yet sure what she would like to pursue after college, but she finds meaning in traveling, meeting new people, and sharing stories.

A NOTE FROM THE AUTHOR

Truth be told, I begrudgingly received the assignment that led me to this paper in my required writing class. In high school, I convinced myself that I didn’t like writing, and though the openended, potentially-interesting prompt tasked me to research, consider, and write about a topic of personal curiosity, I approached the essay as yet another chore due at the end of the quarter.

At first, I struggled to identify a topic for my essay. Then, one day, it dawned on me: I know very, very little about Alzheimer’s, a disease that runs in my family and so many others, which will likely invade my life more than once again. As I began to research the disease, I repeatedly read phrases like “he did not recognize himself and his family” or “she lost herself in the disease.” What is the self that these individuals lost? Where does it come from? Does everyone define it the same way?

Those questions caught my attention and captivated me for months as I constructed this paper. Not only did I learn about the human brain, a ravenous disease, and American culture, I reflected on my own life, my grandmother, and my family’s encounter with Alzheimer’s. I thoroughly enjoyed connecting personal anecdotes to academic research as I constructed my final product. Overall, the process taught me a valuable lesson: that academic inquiry is not separate from real life. In fact, combining research with reality can even be fun.

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