Eight years after her initial collapse and facing rising costs, we moved my then eighty-year-old mother to a more rural and cheaper, yet excellent, care center in Cape Town under Tertia’s care. She would spend her last two years in the landscape where she went to university and fell in love with my father, a fact she remembered even while forgetting her children’s names.
My mother, Susan Steenekamp, and I, shortly after her move to Cape Town in 2004. Our family held a Christmas gathering in Groot Brak, Western Cape, South Africa, at the vacation home of my sister and brother-in-law, Lana and Buzz Leuner.
My mother’s deterioration had gone without a name. What, then, to do about my own unhinging? Even though much had been learned about dementia in the decade after my mother’s death, all but the most occult sources concurred that there is ultimately no cure for dementia, or any other brain disorder with symptoms adding up to the gradual loss of intellectual function thereby “depriv[ing] sufferers from be[ing] able to think well enough to do normal activities, such as getting dressed or eating,” “the ability to solve problems or control their emotions,” as well as the adroitness to distinguish between things that are real and “things that are not there.”
Despite the lack of anything approaching a “cure,” there are medications thought to slow the progression of Alzheimer’s and other dementias. However, my preliminary research confirmed what Peter and I had learned anecdotally: no existing medications could stave off the inevitable decline that catches up with even the most diligently monitored patient. We were afraid that the quest for diagnosis could trap us in what writer and physician Atul Gawande once described as “the unstoppable momentum of medical treatment.” Still, we are both the kind of people who want to know, always drawn like moths toward enlightenment. Also, confirmation of our suspicions might help us prepare. If the unnamable loomed ahead, we could plan for expensive care, diminished quality of life, and a way to end my life at the right time.
I asked Peter to come along for that initial doctor’s appointment in 2010. Our primary care doctor politely entertained our doubts about the value of diagnosis. She heard out our pontifications about what we regarded as a worthwhile quality of life, and let us stew our own way into following her suggestion that I have an MRI. The scan results showed “white matter lesions”—an indication of clogged microvessels that prevent blood from reaching nearby brain areas. Dr. Eborn confirmed the internet wisdom that microvascular dementia might benefit from cholesterol-and blood pressure–lowering medications to retard the clogging. However, a neurologist would first have to confirm a connection between my memory problems and the lesions.
One neurologist, one neuropsychologist, dozens of tests, and many hundreds of out-of-pocket dollars later, my neurologist uttered the d-word. She projected that two more neurological evaluations at two-year intervals would be needed before I would officially meet the criteria of dementia.
But in my heart I already knew: I am dementing. I am dementing. I am dementing.
Reflection on Dementia Field Notes of 8-11-2011 and 8-15-2011
Twice in August 2011, I jotted down notes in my journal about moments—possibly minutes—when I felt stark, staring mad. In the first entry, I tell about trying to rest in the afternoon and I keep on seeing columns of black and red Arial type scrolling on my eyelids.
A few days later, my entry was about sitting on my half of our two-seater La-Z-Boy reading The Botany of Desire. Soon after getting started, while paging over, I punched a hole in the page I had grabbed with the thumb and forefinger of my left hand. A few pages later, I apparently took up the page too roughly again, this time tearing out a corner piece.
Remembering the scrolling, I immediately thought that it was related to the book-ripping.
At the end of the week, however, while preparing our medications for the next week, Peter discovered that we had both forgotten to take our tablets the day before the scrolling. I knew that a sudden withdrawal of the drugs I take to counter my short-term-memory-loss-induced anxiety causes hallucinogenic effects. Thank goodness that turned out to be the cause—I thought I was getting even crazier.
It feels good to blame the lack of medication for the visual weirdness. However, I certainly have not forgotten my medication often enough to account for the fifteen months of weirdness I have so far recorded in my journal. While I do feel a bit crazy when I discover myself doing something unusual or illogical, I do not feel “mad” most of the time. Am I crazy like a fox? Or, maybe, Lewis Carroll’s Cat?
Alice [asked the Cat]: “And how do you know that you’re mad?”
“To begin with,” said the Cat, “a dog’s not mad. You grant that?”
“I suppose so,” said Alice.
“Well, then,” the Cat went on, “you see, a dog growls when it’s angry, and wags its tail when it’s pleased. Now I growl when I’m pleased, and wag my tail when I’m angry. Therefore I’m mad.”
“I call it purring, not growling,” said Alice.
“Call it what you like.”
Or, maybe, like Frida Kahlo, I have resolved to turn “madness” into a desirable state? A curtain behind which “I could do whatever I liked”? Kahlo: I’d arrange flowers, all day long, I’d paint; pain, love and tenderness, I would laugh as much as I feel like at the stupidity of others, and they would all say: “Poor thing, she’s crazy!”
Or, maybe, in this Don Quixote is my sage: When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams—this may be madness. Too much sanity may be madness—and maddest of all: to see life as it is, and not as it should be!
Whoever I decide to take as a role model for the lunacy that awaits me, I have already, like Charles Baudelaire, “felt the wind on the wing of madness.”
Years before my mental disorientations had become a daily bother, in the days before Gender Studies when I was still employed in corporate America, I took a business trip to Raleigh, North Carolina, where Jacques,* a former computer designer colleague of Peter’s from South Africa, then lived.
In South Africa, Peter and the man had sometimes gone to lunch or for a drink after work, but I had only met him and his wife—let’s call them the Du Preez family—at company-sponsored social occasions. After both families emigrated to the United States, Peter and Jacques kept in touch, occasionally swapping stories of their experiences trying to settle into their respective states, and we learned more about his wife and family than we had known in our South African past.
After I landed in Raleigh, the Du Preezes duly picked me up at the hotel and took me to their home, where other South Africans would join us for dinner. After a nostalgia-triggering braaivleis, or barbecue, a friend of the Du Preezes’, who had come to the braaivleis with a male partner, told us how he discovered he was gay. Let’s call him Fanus.
Fanus grew up in the 1950s in a large, tough-love Afrikaner family that adhered to South Africa’s most conservative social and political thinking. As far as he could remember, Fanus had always wanted to be a good person and adhered to the conservative norms of his family, church, and school. After high school he joined the army, where he first encountered the terms homo and queer and the many colorfully pejorative variations that proliferate in Afrikaans as well as in English, which served as the lingua franca of a country with eleven official languages. Since these terms came into Fanus’s vocabulary sealed in a centuries-thick layer of negative associations, he had no doubt that moffies, skeefs, gayins, poofters, pinks, fruits, dahlias, homos, queers, and those labeled with words he could not even bring himself to say were godless, unnatural people and the total opposite of the goodness he had pursued all his life. Accordingly, he joined his army buddies in taunting and terrorizing those unlucky few whose behavior or actions had marked them for torment in their heterosexual fellow soldiers’ eyes.
After honorably completing his military service, Fanus started working in a business environment that was not quite as socially conservative a
s his hometown or the army. He made many friends, including a woman—say her name was Elsa—with whom he became very close. They spent a lot of time together. He started thinking about a future with her, a thought that made him extremely happy. She was the kind of woman his parents would love. She would be a good mother. He was young, however, and poor, and did not mention his dreams to her.
One day after work Fanus and Elsa were having a drink together, as they frequently did. Caught up in the warmth and comfort of their friendship, Fanus let slip the words “our future.”
Elsa drew back, startled. After a few moments of trying to regain her composure, she leaned closer, took his hand in hers, and, in the gentlest, most caring voice, said, “Fanus, you and I have no future together. You are a homo.”
When Fanus was telling this part of the story at the Du Preezes’ party, his cup rattled in its saucer and he put it down on a side table. “When Elsa said that,” he continued, “the lights of the world went out. An unspeakably foul, gray mist stretched all around me. My life had no shape, it was barren.”
Everyone at the barbecue became totally quiet. Fanus went on. “After a long, long time,” he said, “the lights of the world came back on. Color seeped back into my life. Objects fell into their contours like figures developing on a Polaroid. I felt bloated with relief, a helium balloon.” As joy spread from his mouth to his eyes, he riffed on his own metaphor. “A homo balloon. I was a homo. I am a homo.”
During the days following my neurologist’s pronunciation of my brain’s fate, snatches from the evening at the Du Preezes’ home in Raleigh bubbled into my consciousness like unrelated happenings in a dream. With the only tool at my disposal being a sidelong familiarity with Freud’s nineteenth-century dream analysis, I was unable to decipher the significance of this in relation to anything going on in my life at the time. After months of thinking about it, however, it occurred to me that what I remembered had everything to do with the sense that my self-perception, my identity indeed, had been undergoing a monumental change from the moment my neurologist reported my test results. The memory that eventually emerged from the shenanigans of my subconscious not surprisingly turned out to be Fanus’s story—or, more accurately, the core of Fanus’s story, which, as I learned when I tracked Fanus down, had in the interim been encrusted with details from coming-out stories I had heard from other friends or gender studies students.
In the days after my neurologist gave a name to what was wrong with me, the separate circles in which I had kept the images of myself as a woman who lives and dies by her rationality and that of my mother after her illness as a Dickensian madwoman gradually began to overlap like the intersection of a Venn diagram. Within that convergence, I came out to myself in tones that sounded believable to my skeptical ears: I am dementing. I am dementing. I am dementing.
Chapter Two
Quantum Puff Adders and Fractional Memories
I DAILY CONTINUE TO LURCH into that “strange Country,” with “all Things new, and unknown about,” a territory demarcated by the intersections of my past, present, and future selves. In the past—really until I was in my late fifties—I took my good memory for granted in the way that one does other privileges into which one is born: my middle-class existence, my good health, my entitlements as a white person in South Africa and the United States. In reflective moments I was guiltily grateful for these gifts, but in my daily life I did not stop to consider them. They were just part of who I was.
In the present—from the time my short-term memory started to fail—I frequently am bewildered about why, where, and who I am: What was the goal that had bounced me out of bed and sent me outside to stare at the garage door? What store am I in? Who is this person I call “I” who feels so lost in a world that, all of a sudden, seems to tilt from its axis?
My perplexity in the present also reaches back into the past. If, at the end of every day when we sit down with a glass of wine to watch a video while holding hands, Peter and I have the same argument about whether we have finished watching our previous night’s film (I swear we haven’t, whereas Peter is equally certain that we have and he reminds me of the ending and I concede that he was right), what truth value does my vivid, thirty-year-old memory of our seventeenth wedding anniversary merit? And yet, it plays like a video on my closed eyelids: Peter at home with Newton; I in a motel room in Vernal, Utah, with my girlfriends Kathy and Anne, chaperoning our elementary-school daughters on a trip to the state-level Olympics of the Mind competition, which, the next morning, they won. And what about the Technicolor veracity of sixty-year-ago scenes from my childhood about my life on the Steenekamp family farm in South Africa?
I was four years old in 1953 when we moved eight hundred miles northeast from Cape Town to the Transvaal, a region as different and as distant from my birthplace as Chicago is from a farm in Kansas. The idea was that my father, Boshoff, would help my grandfather on the family farm. In retrospect, I realize that my father—who had lived away from the farm from age thirteen until after he had completed his degree at Wits University and worked as an engineer for five years—had reverted to the role of an apprentice, albeit a voluntary one. His older brother, Koot, who had also returned to farming after living away for a dozen years during which he completed his engineering education, had already been inducted into the mysteries of farming by their father. Koot had completed his apprenticeship some years before our move and had been farming his portion on his own for some years. He would be my father’s mentor. My father would start his training by working his own land. Once the farm started yielding an income, he would build a house on his portion and move our family there. In the meantime, my parents, siblings, and I lived with our grandparents in the Old House. From there my father drove the seven miles to the fields and back every day, often more than once.
Counting my father, three of the five Steenekamp siblings lived on the farm at this time, and soon a fourth—an aunt returning from England—would join us, too. Our aunts, uncles, and their families—including nine cousins from age four down to newborns—all lived within walking distance or a short drive away. By the time I was seven years old, my parents had built our own house on the portion of the farm that my father inherited, a plot of about a hundred imperial acres, or morgen, Dutch for “morning.” A morgen is approximately the amount of land tillable by one man behind an ox in the morning hours of a day, equivalent to about three-quarters of an American football field. Parts of our hundred morgen had been plowed and planted in former years, but, according to the known history of the area, no white settlers had ever lived on the land before. If any of the Bafokeng, the original Tswana-speaking inhabitants of the area, were still living on our land when the Steenekamps started farming there in 1838, I was not aware of it.
Our Steenekamp forebears joined other Voortrekkers, or First-Leavers, who had had it up to their eyebrows with the British rulers, who had won the colony from Holland in 1806 during the Napoleonic wars.
My Voortrekker ancestors joined a party of other disgruntled farmers, loading their ox wagons and setting out northward, together with hundreds of other family parties, on the Groot Trek, or Great Migration, into the wild interior. Along the way, they battled indigenous peoples for land and passage with their superior weapons—guns against assegais, clubs, and sharpened sticks. An ancestor on my grandmother’s side was six years old when Sotho warriors, ancestors of the Transvaal Bafokeng, attacked her party’s encampment at the Bushman River on February 17, 1838. From her hiding place amid the reeds on the marshy riverbank, she watched as her parents and siblings were speared and clubbed to death. According to family legend—and a photo of a grim-faced woman in a bonnet in the Old House—she wore her trauma like a badge of distinction. As family legend has it, she never smiled again until her death.
The Voortrekker Steenekamps settled in the Rustenburg district on land then still occupied by the Bafokeng, who, by then, had fallen on hard times and welcomed the newcomers as a source of employment. They na
med their farm Beestekraal, Cattle Corral. The farm my grandfather acquired during the 1930s and my father inherited in the 1950s was twenty-six miles from the Voortrekker homestead.
Our new house was as basic for 1956 as Beestekraal’s first dwelling of reeds plastered with clay was for the 1840s. Our home consisted of a spare, L-shaped outbuilding that was supposed to be converted to storage rooms after our “real” house was built. The roof was of corrugated iron, the floor concrete. By my mother’s insistence, our house had a ceiling and larger windows than the peepholes customary for a storeroom. Just as well, because my father’s ship never came in, and the building of our house never proceeded beyond the foundations, which were dug and poured soon after the completion of the storerooms. The setting of our temporary house, at least, was spectacular: from every vantage point, one could see all the way to the horizon that, to the north and east, was demarcated by low ridges known as the “black hillocks” and, to the south and west, by the Magaliesberg range—mountainous parentheses that encircled our home. Inspired by the spectacular view, my mother named our farm Die Kraaines, or the Crow’s Nest.
As was then customary when a patriarch divided his land among his children, my father also “inherited” two black laborers whose families had been employed by the Steenekamps for generations. Ou Isak and Ou Naald were indentured servants of sorts. Although the Ou in their names means Old and is nominally a form of respect, we white people often acted disrespectfully toward them. For example, I remember when one of our aunts, exasperated that Ou Naald, who was deaf and whose back was turned when she shouted an instruction, did not react, she hurled the soapy water from a jug she was washing onto his back.
Memory's Last Breath Page 2