While hazarding the hospital for a non-Covid emergency, Doña Quixote revisits her end-of-life decisions
Featured image: Ana Teresa Barboza: embroidery featuring bodily functions. There is no time like having emergency surgery during our worldwide reckoning with Covid-19 to revisit one’s notions of what the end of a life might look like. On the morning of Saturday August 8, I first became aware of intense, lingering stomach pains. By noon, I had to cut short an outdoor get-together with friends because of the increased severity of the pain. By 3 pm, the pains were unabated, and I started vomiting. Shortly after that, we called our family physician and was told to go to the emergency room at the University of Utah Hospital. After hours of tests, during which my pain did not budge before the medications offered, I was diagnosed with a blockage in the lower end of my large intestine. Given the life-threatening nature of such a blockage, I was scheduled for emergency surgery at midnight. Thanks to my privileged status of having medical insurance and being close to a great hospital, my life was not really in danger at any time. However, the experience of having to go to the hospital during a time when Covid death is all around us caused both Peter and me to think and talk about the thin line between life and death and circle back to the end-of-life plans we had made after my dementia diagnosis.
After five days in the hospital, I was happy to be at home—never mind the surgery cut that reached around my belly button down to the bikini-line scar left by previous abdominal surgery. Alas, my bikini days seem to be over!
During my misadventure, Doña Quixote (a.k.a. My Dementia) took a front seat, all but banishing me from the scene for the first few days. During the year before my hospitalization, Peter and I noticed an acceleration in my downward slide. Before the start of Covid, I started getting badly lost in the two formerly well-known malls that had been a haven of independence to me these last year. My kids and my American family have also noticed my downturn: I change topics in the middle of a sentence, drift out of conversations without noticing. I, who used to track the story in a movie perfectly, have to ask Peter all the time what’s going on in the video we’re watching. In the middle of going somewhere, too, I ask Peter where we’re going and he tells me “the doctor, Starbucks, grandkid night.” A minute later I ask again. Again.
A piece from Erik Thor Sandberg’s Cerebral Bloom paintings
Needless to say, with pain added to my usual confusion I was not able to say much for myself when we arrived at the hospital. Peter explained about my inability to give any information other than my name, and they allowed him to go into the inner sanctum of the hospital wards with me. After my surgery ended at 3 am (I would later learn), a nurse made a bed for Peter from the fold-out couch in my room and he spent the rest of the night with me. During the days after my surgery, he came to visit me at least once a day for a long time and for the first day or two acted as my communication interface with the hospital staff. A day or so into my stay, he discovered that my ongoing state of extra confusion was caused by a “misunderstanding” by which the hospital staff kept giving my narcotics as pain meds rather than just the Tylenol we stipulated when I was admitted. I would never have figured that out by myself. While I’m pissed that an untraceable employee of the U of U hospital made a prescription mistake, I was so grateful to the same hospital for having understood my need for a “translator” during my stay.
During my hospital stay, I experienced indignities of the kind that—if they should be permanent—I described in my my end-of-life plans as red flags that would indicate that I have reached a quality of life that I do not deem acceptable: I totally lost control of my bowels about four times, after which I groggily but stubbornly cleaned myself up in the bathroom/shower but for which I needed the nurses to bring me clean clothes and clean up after me in the room. Because fecal incontinence is not a usual after-effect of my kind of surgery, I had not been given any protective underwear such as Depends. I only received these after the fourth time. I also underwent projectile vomiting four or five times to the extent that each bout required a change of my bed and hospital gown and a big room cleanup—owing to my usual confusion, drugged state, and slowness on the uptake, I every time failed to locate the throw-up bowl with which they had supplied me.
My experience of confusion combined with almost total dependence on others for every daily need briefly threw me into conditions I had expected to experience in the late stages of dementia—conditions I had resolved not to live through once they became the pattern of my life. Peter and I, together with our family, had read, talked through, and watched movies about what happens to people in end-stage dementia. My family agrees with me that one should not have to live through them if the option of death is possible.
The quality of life in the last stages of dementia falls below what is acceptable to me for a meaningful life
After long-term family discussions about my dementia and other end-of-life scenarios, Peter and I each confirmed our wishes in writing: both of us decided that when we are utterly dependent on others and/or when what is most important to us—interacting with the people we love—is no longer possible, our wish is to die by a suicide for which the dying person alone is responsible. No legal jeopardy to each other or our family. My biggest fear is that I will miss the point where I can still mix my own death potion, bring it to my mouth, and swallow it myself. One day you can, next day you can’t.
With the help of my family, I have banished that fear. During a two-year process we called “The Saunders Family Dementia Project,” we figured out a way for me to obtain a legal assisted death when my quality of life drops down below a level that I find acceptable.
As a result of the “Dementia Project,” Peter and I—together with our family, doctors, financial advisor, tax lady, and lawyer—completed a financial plan, Last Will and Testament, and Advance Health Care Directives that give shape to our wishes. As you’ll see in the short film below, our children and their spouses were present when we signed the documents at our lawyer’s office.
Our family addressed, among others, the following questions: What is a quality of life or degree of incapacitation each of us would find acceptable? What long-term care is available for a dementia sufferer of my and Peter’s financial means, through Medicare and private funds? How do we feel about last-ditch life-extending efforts and what would their financial and psychological consequences be? Under what conditions would each of us commit suicide or seek an assisted death? How would each of us react to another’s decision to end their life?
An excerpt from my Advance Health Care Directives:
“A worthwhile life should include joy, acceptance, ‘being with family, having the touch of others, being mentally aware, and not becoming a burden to others.’ Death is as much a reality as birth, growth, maturity and old age.”
We listed flags that would indicate when my quality of life is dwindling below acceptability: Do I appear happy for more hours per day than I am disaffected? Do I spend more hours per day consuming care than just living on my own? Are my caretakers’ children or jobs or marriages or health or quality of life suffering? Do I still make a positive mark on the world, no matter how modest? For example, do I still receive pleasure by cuddling with a friend or child or grandchild? Is it a pleasure for them or am I inappropriate and scary?
When enough of these flags are red, my family has agreed to support me in an assisted suicide. For someone with dementia, though, a legal assisted suicide is not obtainable in the United States. In states where assisted death is legal, only so-called “people of sound mind” can choose to die. Once you have a dementia diagnosis, you are legally no longer of sound mind. No matter that my Advance Directives are signed and sealed in our doctors’ and lawyer’s offices, my wishes before I have lost my reason do not count once I have lost my reason. Therefore, my family and I have planned what we call a “death trip” to Europe. If we can find a way for me to die at home without putting my family in legal jeopardy, we would much rather do that: one possibility is VSED, the voluntary stopping of eating and drinking. People with dementia, with the help of family members who remind them of their wish to die, have succeeded in starving and dehydrating themselves to death. However, VSED has to be done while I can still cooperate with my caretakers. Another possibility for ending my life is to hoard prescription opiates and barbiturates (which I am doing) so that I may use those to die at the right time.
Death tourism to Switzerland
My hospital experience of total dependence on several other people to just get through a single day brought my end-of-life plans to the forefront of my mind. It also emphasized the fact (often discussed in our family) that serious medical mishaps can happen in an instant and that nobody—however much you plan your last days—can ever control the exact circumstances of your death. For example, what if I do not have a gradual decline such as happened over the past nine years, but a sudden one? In the context of microvascular disease, which is the cause of my dementia, I am prone to blood clots in the brain. Some so little I don’t even notice at the time, but some could be large enough to cause a stroke. What happens then? Who in my family will decide whether to just leave me to die as I would want to, or call 911? Is it a reasonable idea to accept medical care until it is clear how big the damage is? But once one is resuscitated and/or hospitalized, you fall under what physician Atul Gawande calls the “seemingly unstoppable momentum of medical treatment,” even in the case that you might have sustained enough brain damage to meet the criteria in my advance directives. No matter how thorough my end-of-life plans, there will be a moment when Peter and my children will have to decide (or the family and I for him) not to intervene in a life-threatening illness or other medical emergency where the pace is much faster than in a dementia decline.
“Humans plan, god laughs”
When Peter and I decided to go into seclusion in March this year, we had each separately decided that we would not agree to be hospitalized or intubated if we contracted the virus: we felt that—given the then (and ongoing) scarcity of hospital resources—treatment should go to younger and stronger people with a better chance of long-term recovery; given our underlying medical conditions, combined with the long-lasting damage then already evident in intubated (particularly elderly) survivors, we believed that—even should we get through the arduous treatment—the damage caused by the virus-cum-intubation would result in a quality of life we did not deem acceptable. We informed our children of our decision and they promised to do everything possible to respect our wishes.
A July 31, 2020, article titled “From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists” reports that COVID-19 “can disrupt a breathtaking array of tissues in the body…The lungs, heart, gut, kidneys, blood vessels, and nervous system are vulnerable.” Together with many other physicians, Adrija Hajra from Albert Einstein College of Medicine in New York City emphasizes the long and difficult duration of recovery and the fact that some people are left with what appears to be permanent, often body-wide, organ damage. She continues to care for those who were infected in the spring and are still recovering.
What my hospital stay and recovery at home also etched on my brain is that Peter would be the caretaker I would “use up” if I should permanently be totally dependent on him. (Although both my children and their families kicked in with food that kept us eating for days, with the danger of Covid they could not otherwise help.) Peter was my go-to person. I could see the wear on him as the days went on, even though he never said anything and did not lose his desire to help. Even though my time at the hospital and the help I needed afterward at home was not as long and presumably not as exhausting for him as a permanent state of looking after me in the later stages of dementia would be, the toll on his body and spirit was large enough. He himself has serious health issues, and the stress and physical hard work to care for me did his health no good. Fortunately I recovered to a point where I could be more independent within a week after arriving home—that meant that by then he had already gone through two weeks of stress and errand-running and cooking and caring for me. I would not ever want to put him through two more such weeks, never mind years of caring for someone who no longer talks or recognizes him. See the movie Away From Her, in which the husband of a woman with Alzheimer’s falls in love with a male patient in the care center. Heartbreaking, despite what seems like a “good” ending—one that doesn’t cut it for me whatsoever. I don’t want Peter or my children to ever go through such pain. I’d rather be dead.
Peter, my helper, my husband, my lover, my Rock. Photo credit: © Paul Hanseen, 801-637-0777
Despite the re-thinking that I’ve done at the start of Covid and during my recent hospitalization, I still find great peace in my family’s promise to assist me in dying in the most feasible way when the time is right. Planning and communicating with my family has freed me to take the best from each moment and live my daily life with joy. Their gift makes me feel similar to what religious people claim in the phrase “let go, let god.”
Lezley Saar. A piece from her Monad Series, 2014
Knit away Covid eternity? Peter instead revamps Gerda’s dementia website, despite Doña Quixote’s backseat commentary
It seems that the traditional crafts—knitting, crotchet, sewing, scrapbooking, cross-stitch—have undergone a revival in the US since the start of the Corona virus pandemic. In Utah, the craft stores were designated “essential businesses” and remained open even during the lockdown. I had been a stranger to craft stores since giving up knitting about six years ago, after failing to comprehend and follow the pattern of a sweater for my then two-year-old grandson, Dante (now 8). Two years ago, though, I tried knitting again after my sister-in-law, Sandy Repsher, suffered a stroke and decided to use knitting as a therapy to regain functionality in her left hand. She had found a pattern of an elegant 1930s sweater, which consists mostly of garter stitch, the simplest knitting mode there is. Each of us acquired our preferred yarn, and we started the project together. More than a year—and a knitting class at the Columbus Community Center later—I finally finished mine during the first weeks of Covid seclusion: instead of a sweater, I produced a long scarf pocked with mistakes, but still usable.
My thirties wanna-be sweater with a vintage thirties hat
When my sweater-turned scarf was done, I was left with no nerve-calming activity to practice during our ongoing seclusion. I therefore took my life into my hands and braved a nearby craft store (they let in only a few customers at a time, required masks, and practiced social distancing), where I bought yarn for a knee-blanket—in garter stich. Given my dubious progress, that should keep me busy until I die!
My blanket will be colorful…
I was apparently not the only one embracing the crafts during my seclusion: knitted, crotcheted, or sewn artifacts with a stamp of Covid-19 popped up all over the Internet.
Long before Covid, knitting had become a way of life for Icelandic knitwear designer Ýrúrarí Jóhannsdóttir. Before the virus, she had mainly focused on clothing, which included chunky knit sweaters dotted with 3D tongues, or sleeves embellished with faux mouths and teeth. As the featured photo at the beginning of this post and the one below shows, though, she began to translate her love of tongues into face masks when the pandemic reached Iceland.
Another Ýrúrarí Jóhannsdóttir face mask features an enormous split tongue. The designer views her coolly grotesque tongue masks solely as art projects—more sculpture than clothing—rather than as objects to prevent the spread of infection. She intends her masks to evoke a laugh, thereby promoting the idea that covering one’s face can be fun—and funny. “The masks have been used for creating awareness,” she says.
Earlier this week, my life-long South African friend Elza Koen posted an art installation by American multi-media artist Ben Cuevas on Facebook. Despite preceding the Covid era by a decade, the piece strongly evoked our strange new times for me. Transcending the Material incorporates a knitted skeleton (below). During the making of it, the artist reflected on some of the same things that have occupied my mind—and probably yours—during this time of seclusion and social distancing: “the condition of embodiment, exploring what it means to have a body, to inhabit a body, to be a body incarnated in, and interacting with this world.”
One cannot help but rethink your body while being unable to hug friends and cuddle with children or grandchildren. What are our bodies without touch? The virus has robbed us of the formerly ordinary comfort of being physically close to other human beings. The loss that those of us with partners or lovers or housemates experience, however, pales against that of people living alone. Not to mention people who die in the hospital without those they love in attendance. The grace of the universe shines through the nurses and doctors and other medical people who fill the places of the absent loved ones at a death bed.
“Ben Cuevas’s installation features a knitted skeleton seated atop a pyramid of Borden’s condensed milk cans and a cloud of screen prints on Plexi glass suspended above it. The prints are of disembodied anatomical parts. The skeleton is seated in the lotus position—Ben conceives of the piece as a meditation on transcendence; he also sees it as a reference to material culture and the local history of the hamlet Wassaic in New York State, where he was in residence at an arts collective program while making the piece. The condensed milk cans refer to the Borden Company, which used to have a condensed milk factory there.” Bora Mici, Artists Speak.
For me, Cuevas’s skeleton brought to mind Doña Quixote, as I call my demented alter ego, who had for years been a physical presence on our back stoep in the form of a Halloween skeleton Peter had found and I had dressed up.
Despite the fact that we symbolically threw out Doña Quixote’s physical representation when we moved into our apartment, she has of course followed us here, stowed away in my addled head. We had not intended to replace her with a new material form, but we could not help ourselves when we saw the Frida Kahlo figure (above) in a Mexican market while in San Antonio to do a presentation on my dementia. As far as the Doña’s ghostly-self-in-my-head goes, Peter helps me manage the confusion and anxiety that follows in her growing wake. That means he and I have been spending more and more time together even before the seclusion began. Despite our constant—and sometimes annoying—togetherness, we still pause every day to tell each other how lucky we are to have him or her. After dinner, we watch a movie or other video together and hold hands. And, of course, cuddle up in bed together at night. I am so grateful to have a such a close companion in my sorely diminished social world.
Star Wars characters crotcheted by Mer
I do miss holding my kids and grandkids, though we do now and then see them outside and at a distance. I also miss breakfast or lunch with my friends. My and Peter’s world has shrunk to the size of our apartment, except for getting food and running other errands and outside walks when it isn’t too hot. Like, I imagine, so many of you who spend your days not working—and those fortunate enough to be able to work from home—Peter and I have each become even more dependent on our phones (he) and computers (both) for what outside social contact we have.
Increased dependence on my computer had started happening for me years ago, after I could no longer drive as a result of my confusion about my locality in space. For some years, I used the bus. After mistakenly getting off twenty blocks too soon on a 19-degree Farenheit evening in the middle of winter with the next bus only due an hour later, I started avoiding the bus and adopted Über. For the last year or so, though, I have lost the courage to ride Über because of my difficulty in using the app. Peter takes me everywhere I want to go, but I try not to call on him too frequently. Accordingly, I had become much more homebound before the virus even appeared on the horizon.
A rather extreme knitting project…
Given my shrunken social self, more and more of my interactions with the larger world have been through e-mail, my website, and Facebook over the last years. Accordingly, Peter and I thought it fitting to use a few weeks of our time hiding from the virus to revamp my little corner of the Internet: like our bodies over a lifetime, this my website, too, had acquired creaky body parts, started suffering from broken links, and needed a facelift. Besides, Peter and have always enjoyed doing joint projects—although we fight a lot!—plus it would be a good source of new things to talk about now that we don’t have many outside experiences and news of the people in our world has become so lean. Also, sitting next to Peter at the computer for hours was very comforting for me. Although we planned the fixes together, Peter was the one who worked for many hours on simplifying what you see on the page and fixing everything under the hood. He also added a “Search” feature.
Peter is so focused when he works on his computer that he did not need electronics guru Becky Stern’s “knitted head sock for laptop privacy,” a satirical commentary on “how attached and concentrated on technology we are and to highlight the lack of movement that happens when we’re engrossed in our laptops, keyboards, PDAs, etc.”
I kicked in on our website work with the retooling of some titles and the dreaming up of different categories for organizing the blog posts. You can see the categories on the top right of the page: they organize existing posts into topics with similar content, making a search for specific information easier (we hope!). There are also some new categories, for example, “End-of-life plans” and “Questions people ask me.” For the latter, I intend to write more posts answering the dementia questions I get from people I come across in my daily life or meet in the cloud.
Today, “we”—as long as you take the first-person plural pronoun as heavily weighted toward Peter—present our joint effort. Our hope is that you mostly won’t notice the difference, but rather just feel that the website is easier to use.
Thanks to all of you for supporting me and my family through our dementia journey “before,” “during,” and, soon—I hope—“after” the Covid era, until all I can do is play with an Alheimer’s/dementia “fidget lap blanket” I hope someone will eventually craft for me…
“Black Lives Matter,” shout I, who grew up white in South Africa, a perpetrator, beneficiary, and eyewitness of Apartheid
Featured image: Jean-Michel Basquiat’s “Defacement (The Death of Michael Stewart),” 1983.
Dementia makes you forget, but you don’t get to choose what you forget about your own part in racism. What you learned first, when you were a small child, usually lasts the longest.
WHAT I WANT TO FORGET
Watching out of the living room window how my father is beating a man—our black farm foreman, who’s being stretched across an empty petrol drum by two other black farmworkers—beating him with a piece of rubber hose-pipe along his naked back down to the bottom of the pants pulled tight over his buttocks. Again and again. I was six years old. The scene both sickened and thrilled me: I felt ill with the pain and shame of the black person squirming and trying to hold back his screams, but was glad at the same time that my father was the powerful white person doing the beating, not receiving it.
The farmhouse where I spent most of my growing-up years. The photo dates from when I was sixteen and in my first year at the University of Pretoria. It was the mid-year break and I was about to leave for a year in the USA as an exchange student. From the left, my brother Carel, me, brother Klasie with Dapper the dog, brother Boshoff, sister Tertia holding my mother’s hand. (My sister Lana was not at home that day.) Behind the house is the water tank filled with water pumped from our borehole. It was between the house and the tank that my father beat the man about 10 years before this photo was taken.
I was very close to my father. He shared and encouraged my interest in math, science, and Latin, and we often looked at my school books together when I was back home from boarding school. I never saw him act in a physically violent way again after beating the foreman. I knew that he punished my brothers by hitting them with his belt for particularly serious transgressions. But I essentially lived away from home since the age of eleven and never saw in real life how he dealt with my brothers. When my father hit me with his belt when I was fifteen, there seemed to be little violence in the act. My father had never even spanked me with a bare hand on the arm or upper body or buttocks, as my mother did, at the moment of transgression. My father’s punishment, I knew, was at my mother’s insistence. While at home from boarding school during my Matric (Senior) year for a school vacation, I had been disrespectful of her, though what the exact circumstances were I cannot remember. At the time my father was working away from home as a refrigeration engineer after many successive years of drought-induced crop failures had made us even poorer than before. My mother had told me that she would report my insolence to my father and she followed through. The punishment in the bedroom I shared with my two sisters was an agonizing experience that I am writing about for the first time today. With my sisters shooed out and the door closed, my father took off his belt and moved toward me hesitantly. I was standing up, he hit me on my buttocks and back a few times times. It hurt, but I knew he could have hit me much harder. We stood there, not saying anything, not looking at each other, dumb with mutual shame and embarrassment. He walked out and we never spoke about it again. I cried from humiliation afterwards. He said that I had become prideful about my academic successes and did not understand how hard my mother and everyone at home had it while I was in a wonderful school with food, electricity, and study time all taken care of. It was true.
Gerda (14, seated center) at the Afrikaanse Hoër Meisieskool (Afrikaans High School for Girls) in Pretoria, (1964)
I knew then and know now that my painful-but-not-vicious hiding was in no way equivalent to my father’s beating of the black man that I had seen so many years before. However, the shame I felt—a shame that still makes me cry now when I write—gave me a tiny glimpse into the awfulness of one human being exerting their physical and mental power over someone else. The events were connected in my mind, though, because—after all—the same human being had punished both the foreman and me. My shame, of course, was one-time and fleeting, whereas the foreman, as a black man, must have experienced the shame of submission to a white world in big and small ways every day of his life.
I CANNOT BE A PROPER ALLY OF BLACK LIVES MATTER IF I FORGET OR DO NOT ACKNOWLEDGE THE ABOVE
In order to be an ally in the Black Lives Matter movement, as a white person I must first reflect very deeply about what it means to be white. I must consider the racist assumptions that I drank in with my mother’s milk while growing up under apartheid, come to terms with the fact that the positive things I was able to do in my life was grounded in my privilege under the system, and understand how my whiteness shaped my life. I must acknowledge that my self is deeply racist—the only thing that enables me not to seem so (to the extent that I succeed) is the thin veneer of rational will not to be racist. I saw the racism return in my mother as her reason diminished and the values she had adopted as an adult were worn away. I am determined to end my life before I return to my childhood assumption that we white people were superior and that it was our duty to be “good” to black people, who “did not have the ability to achieve what we did.”
South African man looking bemusedly at a boy with a toy gun
HOW MY EARLY YEARS SHAPED ME AS A RACIST
The problem with even overt and cruel racism is that it can seem normal. I was present in adult company when stories were told about the unreliability and treachery of the farm laborers. Other farmers had to beat someone every now and then, you learn to think. Our foreman, after all, had driven our tractor into the ditch while drunk. We kids also get spanked when we do something wrong. Less horrific acts of racism slide into “normal” with even more ease than the big, obvious ones. It’s what your father and mother and aunts and uncles and neighbors do. We are white, they are black. We are superior to them. It enters your brain and body like the magnificence of the mountain ridges, the smell of the veld, the grandeur of the constellations whose names my father taught me when we would lie on the dried grass of our “lawn” in the dark farm night, the fear of bilharzia in the river, the deadliness of puff adders, the “knowledge” that we white children should not play with the farm laborers’ children: they were unhygienic, their noses were always runny, and we would catch whatever they had.
A family of farm laborers on our farm. While we ourselves lived in farm outbuildings while awaiting the house that my parents never got to build and did not have electricity until after I had gone to boarding school at the age of eleven, we lived in a world of riches compared to the people who worked for us. Despite the story I told about my father, he was also a benevolent man, community-minded and “good” to his laborers. He and his brother established a school for the black children in our area. They would visit with the headmaster (they in their khaki shorts and short-sleeve shirts and the Master sweating in his suit) at my uncle’s house—not inside, but on the stoep. My aunt had the housemaid take out a tray for them with a good tea set laid out on it, complete with a plate of cookies. It was the first time we gawking siblings and cousins saw a black person drink from a cup-and-saucer rather than a tin mug.
My first remembered lesson in more subtle racism came when I was about seven years old. That winter, measles broke out in the region of our farm. The Tswana woman who worked in our house had seven children. Six of them died over the span of a weekend. My mother told me the terrible news after I had crawled beside her on my parents’ bed where she lay sideways, nursing her fourth child, my then brand new baby brother.
Even though in my mind the kids who’d died had been merely a huddle of dirty bodies with tattered clothing, when I heard the news my imagination transposed the faces of my three siblings upon my mind’s eye images of their dead bodies : Lana, Klasie, and baby Carel all lying dead on my parents’ bed. Twice over. Tears welled in my eyes and dribbled over. My mother, while stroking the baby’s head, tried to comfort me. “Don’t be so sad,” she said. “They don’t love their children the way we do.”
I cried, sounding watery wails. My mother pulled my brother from her breast and laid him next to me. She stroked my hair, his baby fluff. She reached for the soft baby hairbrush on the bedside cabinet and put it in my hand. She put her hand over mine, and together we brushed my brother’s downy head. I was still sad—I did not believe in my heart what my mother had said, but my crying slowed. My distrust of my mother’s judgment was softened, wrapped in a scene of love and physical closeness from which I still cannot totally disentangle it.
My mother and father with me, their firstborn, in 1949.
This was the same mother who would soon after understand the plight of a woman who worked in our house and smelled strongly of having her period because she did not have any form of sanitary protection other than rag stuffings. My mother, who herself had to ration her sanitary protection because of our cash-strapped way of life (as I had to do once I was at boarding school and got my period)—my mother gave the woman a clean pair of her own panties and a pad, together with a bucket of water and soap and the use of our bathroom, to clean herself up. In retrospect I want to cry for the inadequacy of this gesture—what would the woman have done the next day and the next month and the rest of her impoverished life? I also want to cry for the shame the woman must have felt. But I am grateful for an early example of my mother seeing someone with a black skin as a fellow human being and -woman. We racists do not necessarily always miss the fact that people of color are our fellow humans. But missing it even once is too much.
WHEN YOU REALIZE YOU ARE RACIST, YOU MUST EDUCATE YOURSELF TO CHANGE YOUR MIND SET
Despite knowing in my late teens and early twenties that the very core of my being had been formed within racism and despite desperately wanting to embody anti-racist ideas, I did not become a heroic participant in South Africa’s freedom struggle. While Peter and I did allow Rose Mnisi—the woman who lived on our property and worked in our house one day a week for the room—to have her college-age daughter Maria stay with her illegally (because Maria did not have and could not legally obtain a pass for our area) during the young woman’s vacations; and kept the gates locked against the pass police; and gave the alarm when we saw pass police in the area so that Maria could hide under Rose’s bed, like most white South Africans of our acquaintance we did not attend protests or otherwise become sociopolitically active. Like some—but only a fraction—of our white South Africans friends and acquaintances, we instead plotted our escape: when Peter was offered a computer job in Utah and we were able to obtain a visa to the US, we emigrated. We could not wait to put our racist environment behind us and raise our children in the post-civil rights haven of the US. Or so we thought. It was 1984.
In 1988, during our first visit back to South Africa after emigrating, we were able to take Rose Mnisi out to a restaurant and sit together eating in public for the first time ever. We were astonished at how fast changes were happening in South Africa—this was even before Nelson Mandela had been let out of prison.
We had not imagined that Apartheid would end in our lifetime. In years to come, I would experience two more paradigm shifts related to formerly “second-class citizens” winning the beginning of their rights: the legalization of gay marriage and the changes already effected by today’s Black Lives Matter movement. As was the result in South Africa when apartheid was finally abolished, the wins for gay marriage (together with the Supreme Court decision this week against workplace discrimination) and the tentative gains for people of color over the last weeks, as well as the Supreme Court decision to let DACA stand, do not mean the end of our society’s work to make sure these leaps forward continue. This is only the beginning—but I’m so grateful to see a significant-seeming forward jump in anti-otherism in my lifetime.
Anti-police-brutality rally in Salt Lake City, June 2020. Sadly Peter and I can no longer attend marches, but we are very proud that our godchildren and other young people we know are mask-wearing participants.
After we immigrated, it very quickly became clear to Peter and me that the subtle forms of racism that we were still trying to rid ourselves of and which we had hoped to escape by moving to the US were still present all around us in our new country; in addition, the privileges we had amassed as white South Africans under apartheid were still working for us in our new city: during our first visit to the offices of what was then the Immigration and Naturalization Services (INS) to start our application for permanent residency, our white skins and supposedly “British” English won us respectful treatment, while our dark-skinned and heavily accented fellow immigrants were treated in a disdainful manner that made us feel we were back in South Africa. Our status as immigrants, who ourselves had inadvertently entered the US with the wrong visa, ensured our empathy with the undocumented immigrants we encountered during our quest for citizenship and whom we met socially through our salsa dancing. Sensitized to not only the bedeviled lives of our fellow immigrants but also to that of other “second-class citizens” like my “ethnic” and LGBTQ colleagues and students at the University of Utah, Peter and I first participated in protests and other activism for groups systemically disadvantaged by their race, class, first-in-their families-to-go-to-college or DREAMER status, disability, sexuality, or sexual orientation. I (and Peter too) had the privilege of getting to know students and get some insight into the difficulties they encountered as a result of systemic discrimination of various kinds Some of these students became friends and stayed in contact with Peter and me long after their graduation. I am grateful to them for bearing with my ignorance and enriching my and my family’s lives.
Above, getting to know students at our house, and, below, going to protests, 1995-2001; below, left: Peter (second from left) protesting with my students at the U of U against theater owner Larry Miller’s refusal to show Breakback Mountain in his theaters in Salt Lake City; below, middle: Peter and I joined a crowd estimated by Salt Lake City police at about 25,000 people to participate in the “Marcha por la dignidad” (March for Dignity) immigration rally and march up State Street Sunday, April 9, 2006. Although we knew only a handful of Latino people from salsa dancing and elsewhere, we ran into an amazing number of acquaintances in this huge crowd! Our hearts runneth over with the love we experienced from them; below, right: “kiss-in” protest at the Salt Lake City temple of the Church of Jesus Christ of Latter Day Saints against the banishment of the display of handholding or other physical affection between gay couples on church grounds.
AND THEN THERE WAS RODNEY KING AND… ERIC GARNER AND… GEORGE FLOYD… AND, THIS WEEK, RAYSHARD BROOKS
During the very time at the end of 1983 when Peter and I were selling our house and packing our possessions for our move to our naive version of the US as “non-racist” (a more realistic version would have been “not as racist systemically as South Africa, but still racist) , a young African-American man named Michael Stewart was arrested by New York transit police for writing three letters with a marker on the tile wall at the First Avenue L-train station. “Police handcuffed him so tightly that his hands turned blue, and threw him, face down, onto the concrete. One of them sat on top of him. He struggled, tried to run, screamed. They bound his feet, so he was trussed up like an animal. At one point, there were 11 cops around him. They put him in the back of a police van and took him to Bellevue Hospital. During that journey he was strangled, and when they got to Bellevue, he had stopped breathing. His face was blue from lack of air. At the hospital they resuscitated him, and kept him in a coma for 13 days until he took his last breath. He was only 25 years old” (“Michael Stewart was Murdered“).
Michael Stewart with friend David Ilku in a modeling shoot. (“Michael Stewart was Murdered“)
“During the investigation that followed, the New York medical examiner removed Michael’s eyes from his head and bleached them, whitewashing the burst blood vessels that were a sign of asphyxiation. He’d tried to hide the signs of strangulation. Michael died because he couldn’t breathe.
“There were no serious consequences. The medical examiner was fired two years later. A grand jury was convened, then dismissed. Another grand jury indicted six transit cops, but all of them were acquitted in a trial in 1985. Years later, Michael’s family did get a $1.7 million settlement.”
Demonstration against the medical examiner that tried to hide the signs of Michael’s strangulation by police. Screen grab from “Who Killed Michael Stewart?,” a video documentary by Franck Lazare Goldberg.
Like Stewart, Jean-Michel Basquiat, who made the art piece “Defacement (The Death of Michael Stewart)” shortly after the young man’s death in 1983, lived in New York City during the early 1980s and was young, middle class, handsome, dreadlocked, and black. They moved in the same creative circles in the East Village and Lower East Side bohemia. After Stewart’s death, an acquaintance that Stewart and Basquiat had in common, Keith Haring, told friends “with bitter wonderment, that he’d been arrested four times for marking, yet, as a sassy but nice white lad, he was always let go with, at worst, offhand insults to his unconcealed gayness.” However, Basquiat, who’d had some scary encounters with police before, said, “It could have been me.” While visiting Haring in his studio shortly after hearing the news, the artist used marker and acrylics to dash off a sketch of two fiendish cops beating an armless, legless figure on a graffiti-crowded plasterboard wall. Unrelated tags of other graffitists and random froths of spray paint share the surface. Before moving out of his studio in 1985, Haring cut the image from the wall, in a rectangle about two feet high and two and a half feet wide. In 1989, a year after Basquiat’s death, at twenty-seven, from a heroin overdose, Haring had a decorator put it into a fancy gilt frame and hung it above his bed. “Defacement is…unfiltered. It’s not showing this noble aspect of someone’s humanity. It’s just the rawness of what happened. It is simply a black man standing in the reality of a black man, in the face of state-sanctioned violent offenders who can, in one single moment, kill those who they are sworn to protect. (“Basquiat’s Memorial to a Young Artist Killed by Police,” New Yorker, 2019.)
The Defacement (The Death of Michael Stewart) could stand for a memorial as well as a foreboding of the deaths of so many other people of color who met their ends at the hands of police- or other racist-driven violence, reaching back to Emmett Till, and gathering up Rodney King, Trayvon Martin, Michael Brown, Eric Garner, and the many others in between and after, up to George Floyd—and now Rayshard Brooks. To do justice to them, we must find ways to SAY THEIR NAMES, like the Baby Names Website and the Minneapolis Cemetary Installation just blocks away from where George Floyd was killed.
WE WHITE ANTI-RACIST ALLIES MUST DO MORE THAN JUST “SAY THEIR NAMES”
- We must listen to what people of color have to tell us
- We must protest (wearing masks) if we are young and healthy enough to do so
- We must educate ourselves, e.g., read “An Essential Anti-Racist Reading List,” Mireille Cassandra Harper’s Non-Optical Allyship Guide, Ten Commandments for White People
- We must buy or get our library to order Antiracist Baby by Ibram X. Kendi to read to our children, grandchildren, godchildren, and/or any other children we can round up
- We must help register people (particularly those in disadvantaged communities) to vote
- We must, if we can, donate to anti-racist organizations, whether you choose one that does sociopolitical advocacy or one that helps people experiencing food insecurity as a result of the Covid-19 epidemic, a slice of the population in which people of color are overwhelmingly overrepresented
- We must listen again to Dr. Martin Luther King Jr’s “I Have a Dream” speech: “I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream”
- We must advocate for an end to systemic medical discrimination and all other forms of systemic inequities. We must vet our election candidates based on all of these considerations and then WE MUST VOTE
Today, I picked up a cup in the living room to take to the dishwasher. In our kitchen, five steps away, I could not find the dishwasher. Or, rather, the concept of “dishwasher” did not come together in my head, even though I kept repeating “dishwasher, dishwasher” in my mind to remember what to do. In frustration, I hefted the cup in my hand toward various kitchen objects, trying to figure out what to do next. From somewhere the knowledge came that a dishwasher was something you opened up to put something into. I started opening drawers and cupboard doors. When I got to the fridge, the gestalt of “our-dishwasher-in-the-apartment-kitchen” coalesced in my brain and I knew all I had to do was turn around and its black glass face would be there. My understanding of the task at hand was restored.
Not so my confidence.
Rightmost painting from Francis Bacon’s triptych Studies from the Human Body, 1970
My frightening and disconcerting experience served as a reminder that, even though my head works better in this odd world of little social contact during the coronavirus slowdown, my mental erosion is still ongoing. My brain is getting more and more disorganized.
Which brings me to the Second Law of Thermodynamics.
In everyday language, the Second Law can be said to state that the things in the world become less and less organized as time goes on. In scientific language, the Second Law says that the entropy, or disorder, of a closed system always increases over time. Take, for example, a roadside sculpture that Swedish artist Karel Momem gave to the State of Utah as a gift in 1986, two years after we arrived in Salt Lake City from South Africa. The Tree of Utah is a columnar structure, visible for seventeen miles before you get to it, seemingly deposited overnight on the salt flats by an alien space ship, right beside the I-80 and very close to Wendover, a town that straddles the Utah/Nevada state line. About a decade later, the Tree regrettably started showing signs of inept art management by the State’s Division of Facilities and Construction, who saw fit to install a razor-wire-topped fence around its base. The barrier shimmers like a crown of thorns—several of which lodge themselves in my flesh as soon as the nature of the addition registers on my lover-of-odd-art brain: the illusion of extra-terrestrial origins is utterly destroyed! At first, potential vandalism presents itself as the proximate cause for the barrier’s materialization, but a quick google search reveals that the vandal is rather the Second Law itself: the fence, it turns out, is intended to protect visitors from the tiles that keep dropping off the tree’s spherical “fruits” to join the fallen “leaves”—large spherical segments intentionally scattered by the sculptor as part of his artistic conception—on the salty ground below.
Karel Momem’s creation, The Tree of Utah, stretches 87 feet to the sky, “a ramrod of pre-cast concrete that displays over 30 different colors on the tree’s six concrete spheres. Each sphere is covered with rocks, quarried in Utah, adhered to the surface. Ceramic tiles imported from Italy—some of which have now been shed—complement the blue and green crystalline rock. For now, the fence is the closest The Tree of Utah will come to having any repair work done. An endowment was to be established for the work’s upkeep, but has never materialized.” (Hikmet Sidney Loe).
The knowledge that an industrial-strength glue gun could prevent the Tree of Utah’s disintegration opens up the flip side of the Second Law of Thermodynamics: It is possible to take up arms against entropy! The law holds only in a closed system, where no energy passes inward from outside. The universe is the ultimate closed system: by definition, it has no outside, therefore no place exists from where energy could come in. However, while the universe as a whole inevitably slides toward disorder, on its inside stashes of heat energy continuously create new pockets of order: aided by gravity and the heat set free through the explosion of previous systems, new stars and planets organize themselves out of the debris left by their forebears. Thus came into being our own solar system, in which—moreover—an ordering mechanism par excellence issued forth: LIFE.
The Fourth World was Black and White by Julie Newdoll, a part of her Emergence Series, an interpretation of the Dine’ (formerly called Navajo) Nation’s Creation Story (2007). With a Bachelor’s in Microbiology (with a minor in art) and a Master’s in Medical Illustration, Newdoll uses microscopic images and molecular structures in her depiction of the Dine’s evolutionary perspective on the origin of life, where everything did not appear fully formed all at once, but started out smaller, less complex, and less well-behaved. In an imaginative translation of the creation story into scientific thought, she associates the four grasshoppers that appeared in this world—white, blue, yellow, and black—as the bases for the genetic material RNA around the central sphere. As these molecules become refined and selected for the best variety, at the top near the arch, a small protein strand appears in the lower right, in the body of “Big Fly,” considered a protector image by the Dine’.
Life takes things that have less order, like dead food, and turns it into things with more order, like cells, tissues, organs. Brains. In us mammals, the neocortex, or layer of neurons right under our skulls, enables perception and coordinated action. In us humans, the neocortex has grown so voluminous that it can only fit inside our skulls by wrinkling into a manifold of grooves, fissures, and prominences that bud on the surface like caulifower florets. In this way life produced the material substratum of our wondrously complex brain that gives us access to the “truth of the Imagination.”
The Fifth World Began As an Island, Julie Newdoll, Emergence Series. Coyote, howling at the top under the arch that delineates the world, is an important figure in the Dine’ legend. Newdoll’s image of an island-world surrounded by water indicates the arrival of cells with a nucleus on the stage of life. Coyote represents proteins, which are involved in most aspects of cellular life. He is located in the arch like a membrane protein, which controls what enters and leaves a cell. The protector figures on the bottom have the sheet (left) and helix (right) motifs of proteins on their bodies. RNA has now given rise to DNA, the genetic material of our current world. DNA is life’s defense against the Second Law: it is, in the words of Erwin Schrödinger who predicted its existence a century before its discovery, the substance behind “an organism’s astonishing gift of concentrating a stream of order on itself and thus escaping the decay into atomic chaos – of drinking orderliness from a suitable environment.”
By the time I could not locate the dishwasher this morning, I had been thinking about LIFE as the antidote for the Second Law for weeks. During the coronavirus confinement that Peter and I have by now practiced for sixty-one days, such thinking was kindled by my having to substitute daily outside walks for our formerly usual activities of errands, going out for coffee, visiting people, or going to the mall to keep to my 10,000 steps per day. While I started out by I walking purposefully in the neighborhood and parks near us with my eye on my step counter, I gradually drifted from goal-directed excursions to just walking under the trees and next to the river in the wilder part of Hidden Hollow and Sugarhouse Park in the same leisurely way as I had done as a child on the farm. Unlike former nature walks of my adult life, which took place at a steady pace on a trail in the mountains, for example, these recent excursions did not require me to “look at nature” or “admire it” or mount an internal or conversational commentary on what I was seeing. Like my childhood self, I walked wherever visual, auditory, or tactile pleasure took me, following the green shimmy of moss on a fallen tree trunk, the crunch of dessicated leaves underfoot, the don’t-touch-me dare of lethal-looking, prickly-spine-armored dried teasel seedheads.
Teasel, Dipsacum sylvestris, originally from Europe, now an invasive species in Utah.
Although, strictly speaking, it is against the law to remove nature items from a park or wilderness area, I cannot keep my hands to myself: following the spirit of the postman character in the eponymous film who used Pablo Neruda’s poems to win the heart of the woman he loved and justified his actions in a expostulation to Neruda that “poetry belongs to those who need it most,” I gathered decaying nature items from under trees in parts of the park where the lawns are mowed and the pods or pine-cone clusters or slivers of bark would in any case get sucked into the mower bag, as well as from the banks of the river behind the high school where dried leaves and peels of bark were just a rainstorm away from being swept away in the current. To the indifferent universe, these objects had had their glorious moment in the cycle of order-giving life; it was meet and right for them to now lose their fine structures to fiat of the Second Law. To, me, though, they were what Sherry Turkle calls “things we use to think with” (Evocative Objects). Clearly, I needed them more than the universe. Glowing with righteous self-justification, I brought these treasures home to adorn the apple branch I had brought from Marissa’s house and Peter had fixed firmly into a pot on our tiny seventh-floor balcony.
Channeling the Second Law, Yvon Chouinard, the founder of outdoor wear maker Patagonia, said, “The hardest thing in the world is to simplify your life because everything is pulling you to be more and more complex.” And so it was with my making of the Wilmington Flats tree: into the already incompatible mix of pine needle clumps, teasel seeds, autumn-tinged holly leaves, acorn-hats, a foundling blue mosaic tile, and so on, I tossed items I scored over the years from craft shop sales: emerald green velvet ribbon, obnoxiously artificial-looking moss balls made out of real moss, flowers with petals of shaved wood, and clip-on birds feathered with real plumes from species with no resemblance to the final product.
For cognitive psychologist and linguist Steven Pinker, “The ultimate purpose of life, mind, and human striving [is] to deploy energy and information to fight back the tide of entropy and carve out refuges of beneficial order.” Such were my happy feelings, for once in sync with those of Doña Quixote, as I labored with molten-glue-wounded and teasel-thorn-porcupined fingers to spawn my freakish but oh so satisfying creation.