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 Where I was introverted and withdrawn, she was outgoing, surrounded by friends, and sought after by many.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.
Bonnie Sue began
behaving erratically in her college years and later was diagnosed with
schizophrenia. She suffered an acute case of the disease, and often responded poorly
to medications and other therapies.
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....
West Chester, Pennsylvania
December 28, 2020
What a beautiful tribute to your sister. God bless us all.ReplyDelete
Remembering your wonderful sisterand wishing you comfort. Beautiful memories...ReplyDelete
Baker, 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.ReplyDelete
Baker, this was beautifully written. I have no doubt your sister’s family cherish this. Thanks for sharing.ReplyDelete
Baker 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.ReplyDelete