A reflection on the life and death of
Bonnie Sue Egerton, my sister, from COVID-19
On Sunday evening, as I sat in my home in Pennsylvania, my niece in Oklahoma began a series of emails to me.
November
29, 8:45 p.m. Unfortunately my mom has tested positive for covid 19. She is
in the hospital but there are no ICU beds available in the state of Oklahoma.…
She isn’t doing very well….
November
29, 10:53 p.m. The nurse just called back. Moms O2 has dropped to 84 so I
am heading to the hospital tonight to see her. She is also in congestive heart
failure.
November
30, 2:01 p.m. Moms condition keeps going downhill. I was able to visit with
her through the night. The hospital has asked…what funeral home I want to use….
I told mom we all love her and she said she loves us all too.
November
30, 3:20 p.m. I’m sorry to say I just received news that Mom has passed
away….
Bonnie Sue was
65 at the time of her death. My big sister by three and a half years, she and I
grew up together, experiencing a happy childhood with the special joys and
challenges of life in small town America in the 1960’s and 70’s.
Dad was a college professor and pastor. Mom was a part-time librarian (later in life she became a full-time social worker). Our childhood years were almost idyllic, marked by summers off and long road trips across America in a Chevrolet station wagon, often traveling the legendary Route 66. We had family in various parts of the country, and Dad’s history studies would take us on side trips to often dusty and dull (to our childish eyes) historical sites.
Bonnie Sue and I
were markedly different, not just in age and gender. Where I was introverted
and withdrawn, she was outgoing, surrounded by friends, and sought after by
many. Where I struggled with poor health, Bonnie Sue was fit and healthy. When
anxiety clawed ragged tears in my confidence, Bonnie Sue was calm and unflappable.
She had the best of our lives together, and she helped me navigate the worst of
my social challenges.
Likewise, there’s
a creative streak in our family that has found its way through each of us, but
Bonnie Sue received the larger portion. Like our father, she was musically
gifted, playing piano, flute, and guitar. And she could write. Stories of young
adult romance – tales that made me as a young boy want to grow up in a rush;
later, she veered into fantasy and tales of otherworldly lives. We played
elaborate fantasy games together, she and I, turning toys and household objects
into an array of personalities and voices, gathered into a civilization of our
own imagining. She could paint. The two of us side by side at easels during art
class, with Bonnie making magical scenes appear on canvas with an effortless
grace I could never match. And perhaps most of all, Bonnie Sue could act. She
was renown throughout our succession of small, rural public schools and
churches for her theatrical performances.
The world during
Bonnie Sue’s adult years would have swiftly surrendered to her multitude of gifts,
her charm, and her crackling intellect, and responded in kind with well-earned accolades
and rewards. But those just rewards were to be denied her.
Her diagnosis was long in coming – it was after she had experienced an unhappy marriage (albeit one that provided her with two wonderful children). Always an accomplished actor, Bonnie Sue was adept at obscuring visible signs of her affliction and held a seemingly normal family life together (at least as seen from a distance) as an Air Force wife and the mother of two children, and she did so for much longer than many could have managed. But inside the bubble of her life was the beating heart of chaos.
My memories of Bonnie Sue largely stopped in 1976: the time frame in which she married and left college before graduating (never to return). It was the year I graduated from high school and began college. To my recollection, she is still a child or a young woman. I try not to remember her as she was when I met her infrequently in adulthood: slowly giving way to obesity and living in a disheveled state amid chaotic surroundings. As she began taking medication her appearance altered, while her behavior veered from erratic and unpredictable to childlike. For most of her adult life, she couldn’t drive or hold a job. She received disability for basic income and medical care. She would rarely talk on the phone. She was hospitalized for more advanced treatment on multiple occasions. She did continue to write for many years, but often with macabre and unsettling content. And she could be unpleasant to talk with.
Schizophrenia is
devastating, and its patients are heavily stigmatized. I suspect the reason
lies in their behavior. Schizophrenics engage in a constellation of behaviors,
but some – such as my sister Bonnie Sue – commit odd and incomprehensible acts
that make us think of choices. Bad choices.
I suspect a part
of Bonnie Sue never abandoned that imaginary world we created together as
children; or perhaps she discovered a different one. Her hallucinations
manifested themselves to her in physical ways. Once, approaching her, I saw her
turn and swiftly gesture to an invisible creature beside her – a creature
perhaps 18” tall. “It’s OK,” she whispered hurriedly, as if my presence had
been about to scare the creature off.
She once shared
with me in a letter that aliens orbiting the earth were speaking to her
psionically through her television set. On one of my visits, she sat
cross-legged in a kitchen chair and gazed at her television for hours at a
time, smoking one cigarette after the other. The television wasn’t turned on.
In another
letter, she described how she could see visual symbols of damnation, written on
the faces of those who were doomed to hell. As she walked along crowded
sidewalks, watching cars and their human cargo moving past, her world was
filled with the sights and thoughts of the damned.
She played with
the gas burners on the kitchen stove. I saw her do this while visiting my
parents when Bonnie Sue was living with them. She began her evening by walking
in a circle through the kitchen, living room, hallway, and den, over and over.
Then she settled in the kitchen where she began turning the gas stove burners
on and off. As the flame whispered into life, a satisfied smile was sketched on
her face. She clicked off the burner and turned it on again. And again, and
again.
Then, there was
the day my niece called as Bonnie Sue was living in her home, saying: “Your
sister just set fire to my kitchen – for the second time.”
We agreed that Bonnie Sue required institutional care. My parents, who had been her caregivers for years, were no longer able. My father had passed, and mother was experiencing her own health decline. Bonnie Sue’s daughter then provided the care she needed for as long as she could, but she was also raising her three children (Bonnie Sue’s grandchildren, who she cherished). After the kitchen fires and other disruptive behavior, that caregiving arrangement was no longer possible.
Bonnie Sue was placed in a group home and remained there for a few years – until preparatory work for a routine surgical procedure disclosed a weakened heart and chronic obstructive pulmonary disease (COPD), the legacy of decades of chain smoking.
Bad decisions
don’t cause schizophrenia, but schizophrenics can make bad ones. And chain
smoking is common. It’s one of the self-destructive behaviors that shortens
schizophrenic lifespans, which one
study has measured as 14.5 years shorter than weighted average lifespans
for the unafflicted. As many as 88% of diagnosed schizophrenics are cigarette
smokers for reasons that remain unclear despite much research.
Whatever Bonnie Sue’s reasons, her years of smoking ensured she was no longer a
candidate for surgery; and her medical issues barred her from continuing to
live in a group home.
By her late 50’s,
Bonnie Sue moved to a nursing home for continued care. And so, she began living
in what would become perhaps the most dangerous environment of all when the
global pandemic of 2020 fell. With ICU beds across the state full or nearly so
(the Oklahoma government
reported 96% ICU bed utilization the day Bonnie Sue died), the end was
certain.
She passed
quickly, dying the day after her positive test result. (We don’t know how long
she may have been symptomatic prior to her test.) She refused to accept oxygen
treatments and had a Do Not Resuscitate order in place. Nothing could have
prepared her for the life she was to live, but she had prepared herself for dying.
A few years ago,
as I was corresponding with my niece, it dawned on me that one of the most
cherished possessions of my life, my recollections of Bonnie Sue as a healthy,
gifted, and happy young girl, teenager, and sister, had been denied to her own family.
Neither her children nor grandchildren had ever had an experience of their
mother and grandmother when she was not seriously mentally ill.
For some days
after that, I began writing a series of recollections of our childhoods
together; simple storytelling with episodes in roughly chronological order. I
described those long family vacations. Milestones and rites of passage (the
time she was learning to drive in our Dad’s manual shift car and caused a dent
in the rear quarter panel; she got inside the trunk with a hammer and tried to
pound it out). The mostly made-up games we played together; and serialized
stories in which we swapped paragraph for paragraph, each trying to outdo,
upend, or confound the other. Real life anecdotes we experienced together (like
the time our uncles brought shotguns into the house on Christmas Eve,
threatening to sit by the fireplace and shoot Santa Claus upon his arrival).
Ultimately, I wrote about 60 pages of descriptive ramblings, interwoven with
family photos. I sent them off to Bonnie Sue’s family and to my own children.
I wrote them because I’m the only one left who can tell them.
And so, a
beautiful childhood made a beautiful person who lived a life of hardship with an
untimely end in the year of COVID-19.
Losing life is
one sure outcome of living. Together, Bonnie Sue and I lost a little brother to
heart disease. I was too young to remember him, but Bonnie retained vague
memories. Years later, when Bonnie was 13 and I was ten, we gained another
little brother who is healthy and well as I write this. He is the second
generation of us.
Bonnie Sue’s
legacy has not been lost. Her son, her daughter, and her three grandchildren
have prospered without the illness that struck down their mother and
grandmother. (The cause of schizophrenia is unknown, but it is thought to be
due in part to genetics. See the WHO source below.)
Bonnie Sue’s
mental health was never the result of bad life choices. She was crushed as
if by an anvil dropped from the clouds. And there are many others like her. The World
Health Organization says there are 20 million people worldwide with
schizophrenia; and every one of them is traveling a difficult road. “Stigma,
discrimination and violation of human rights of people with schizophrenia is
common.”
If you know
someone who is caring for a schizophrenic, recognize the extraordinary
difficulty of their role and support them. It’s as hard as anything else they’ll
do in this life.
If you know
someone who is schizophrenic, do your best for them. Most of all, see that they
receive the specialized care they need, and help others to see them without
stigma attached.
And consider supporting the National Alliance on Mental Illness at www.nami.org.
December 1, 4:52 p.m. The funeral home has mom now.... She and I had discussed what she wanted in the past. We will plant a pink dogwood tree in March....
https://youtu.be/v6h1dbeUqQA
Baker Egerton
West Chester, Pennsylvania
December 28, 2020
What a beautiful tribute to your sister. God bless us all.
ReplyDeleteRemembering your wonderful sisterand wishing you comfort. Beautiful memories...
ReplyDeleteBaker, your writing painted a vivid picture of your sister. Remember the beautiful gifted sister always. May Bonnie Sue’s memory be one that makes you smile, not hurt. Praying for comfort.
ReplyDeleteBaker, this was beautifully written. I have no doubt your sister’s family cherish this. Thanks for sharing.
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ReplyDeleteBaker this is a masterpiece of a tribute. To entire family my deepest condolences.
What a powerful and thoughtful gift you have made for your family and for all with whom you have shared - thank you.
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