During the time I got to know the mentally ill woman of whom Regina was taking care, I had no inclination how big a role madness would play in my own family. While my children were babies and toddlers, my mother was ill with Hodgkin’s disease, but no one imagined that her biggest health challenge would be the loss of her reason. I was a young mother, immersed in life challenges both intellectual and practical, with no inkling that I myself, together with Peter and our children, would get to know madness from the inside. I now look at my mother’s dementia with a more intense personal interest than before my diagnosis.
After Susanna’s mental collapse in 1996 and once she had somewhat regained her reason, she actively and bravely grappled with her unnamed deteriorating condition. She, like me, resorted to writing: Once she had been resituated in the old-age home, Susanna began keeping a dagboek, or daybook: “I walked throughout the sick time for exercise,” she wrote in one entry. “I slept through the afternoon for the lack of inspiration or initiative to do something better.” “My illness brought the finality of things, events strongly to the fore. Is that what is crushing me?”
The twenty-seventh and final entry of Susanna’s daybook is the only one with a title: “Die Ware Jakob,” or “The True Jacob,” an Afrikaans expression for “The Real Thing.” The entry was intended to replace her many false starts on a memoir she had mentioned she was composing, a putting-to-paper of her “justification” of her life. At the time of the last entry, she had apparently lost all the work she’d done on the computer. While awaiting help to relocate her files, she wrote a longhand “true beginning” of her memoir, which I found in her room after her death. Her writing stops midnarrative. She never again wrote any prose we know of—only her name.
The last entry differs from the previous ones in several respects: Susanna writes on every other line of the ruled page, whereas she did not skip lines before—and on this day she wrote one-quarter of the entire daybook. The writing seems fevered—the spacing and orthographically drawn-out words reminiscent of my own long-ago blue book exams. The content, too, is atypical. This entry alone is devoted entirely to her illness.
When I started reading my mother’s daybook, a retroactive dread cramped my heart. How could it be that she suffered so much confusion and unhappiness without me understanding the depth of it? Nevertheless, with an impulse akin to that of John Bayley when he keenly observed his wife’s indignities, I continued reading: I wanted to know my mother’s dementia in all its awfulness. I did not then realize that a similar fate awaited me. I also did not anticipate that I, like Bayley, would decide it was okay to make my mother’s distress public. After I had joined the unenviable club to which my mother belonged, I, like Bayley, convinced myself that shining light into the lonely and scary place of my mother’s dementia—and mine—could possibly be of value to other people who live with dementia, whether it’s their own or that of someone they love.
Die Ware Jacob
4-28-1997
The illness last year from beginning February to the end of October and everything I associate with it—which proves that it did happen—will not leave me. Whether I deny it or whether I affirm it or whether I just let it be… it drags behind me like a specter, is always with me.… The dreadful anguish and shock when I realized I would have to live in an old age home for the rest of my life left me with a fragile heart. Life would never get better.
The night before the onset of the illness, I was working on a painting, inspired and enthusiastic: it was a natural scene, like heaven might have looked like, with beautiful plants, flowers, birds, insects, a lizard, and a snake.
It was late when I went to bed and during the night I saw a vision of heaven. Now, for the first time, I think it could have been a dream with a remnant carrying over into the next day like the painting I had made—however, initially I was convinced that it was a vision, a hallucination! This insight makes me feel a lot better. A hallucination sounds much sicker than a dream… Nothing will persuade me now that it had not been a dream!
Now with the telling I realize that I cannot remember the chronology well at all: I came back home from the hospital, but I don’t know if I stayed at home. I know I was back at the sick bay, because I got into trouble for wetting the floor. I did it to bring down my body temperature. Something I had successfully done at the Little Company of Mary’s Hospital, but on a smaller scale. Back in the sick bay I started getting confused. Or had it already happened at my home?
Even though I have been able to return to my house, the heartsoreness is deeply lodged and I connect it to more and more things. I have the horrible feeling that I was not as sick as it is alleged and that I could have been spared all the trauma of moving. I want to know why I could not just as well have been sick and mixed up at home and have recovered here?
I suspect I must have been ill, since I was so totally dependent and submissive that I did everything I was told.
Reflection on Dementia Field Notes of 5-4-2011
Now that your grandson Kanye has abdicated the portable crib, his sleepovers require more adult accommodations. Accordingly, you are on the hunt for a sleeping bag. Not the Disney kind, with fabric slippery enough to slide, child-and-all, from futon to floor. You want a proper sleep sack, commercial-free and stay-put. Tilting at this newfangled windmill, you set out for Ikea. Before leaving, you study your Google map enhanced with Peter’s penciled-in notes. You are Doña Quixote preparing for a quest.
You conquer the I-15 on-ramp. Eyes peeled, you watch the exit numbers fly by. Ikea is just a few exits south from Newton and Cheryl’s. Next weekend they’re bringing the grandkids for a sleepover: one-year-old Aliya all red-cheeked in her head-to-toe onesie in the crib, four-year-old Kanye snuggled on a mattress in whatever you’re going to find and buy today, maybe something like the quilt you stitched for Marissa by tracing her body on butcher paper.
Damn, you missed a road sign! You fix your gaze on the road, proceed gingerly. Suddenly you realize that you have forgotten the number you are supposed to be looking out for. You probe the passenger seat for the instructions, bring the paper level with the top of the steering wheel, snag the number, repeat like a mantra. YES! Only three exits to go. This place has only three exits, sir: Madness, and Death. As for me and my house, we shall shop. You will never know whether you indeed took the wrong exit or whether it was the road-work detour that deposited you beside a field dotted with horses, sheep, and winter-gray hay bales. The horse that limped away from its more youthful companions and stopped by your car was the perfect Rocinante to your Doña Quixote. Eye to eye, the two of you contemplated the way home.
You remember the winter rescue of a pod of beluga whales trapped near a Chukchi village off the Bering Strait. It was during your family’s first New Year as sojourners of the northern hemisphere. Surrounded by twelve-foot-thick ice, three thousand white whales took turns breathing in a few remaining unfrozen pools. The ocean was beyond their reach, receding as the ice advanced.
Many weeks after the villagers had radioed for help, the icebreaker Moskva cleared a channel to the ocean. Weak and bewildered, the whales fed in the larger pools the Moskva had made. After gaining strength, they started frolicking to what 1820s explorer William Parry had described as “shrill ringing sounds not unlike that of musical glasses played badly.” They swam and they ate; they clicked, yelped, chirped, whistled, and trilled. As the Russian daily newspaper Izvestia wrote in despair, they did everything but pursue their escape along the newly gouged canal. At last someone recalled that whales react acutely to music. The ship’s gramophone was fired up. Russian folk dances, martial fanfares, and classical crescendos poured off the deck. While the patriotic strains left the whales nonplussed, the classical music did the trick. The herd began to follow the ship.
You love this story. However, you feel that those Russian journalists left everything out. Turgenev wouldn’t do that. Checkov wouldn’t do that. There are in fact Russian writers you never heard of, as good as anyone, who would not leav
e out what they have left out. What was the music that persuaded the whales? Beethoven’s soaring architectonic structures? Mozart’s witty contrapuntal complexities? Wagner’s unresolved Tristan chords?
Einstein now gets on your case: Wagner? His musical personality is indescribably offensive. Beethoven is too personal, almost naked. You left out Bach! Listen, play, love, revere—and keep your trap shut.
Now a character from graduate school, literary critic Harold Bloom, strolls into your field of stagnation. Scratching the suborbital depression between Rocinante’s eyes, he remarks, Don Quixote can remain a hero only as long as he retains his crazy will to be himself, as long as he keeps up the war against Freud’s reality principle.
If remaining yourself means you must fight reality, you decline. You, Gertruida Magdalena Saunders, must live and die by reason. Fact is, you have no idea how to retrace your path home along the cambered moonscape pockmarked with half-a-dozen “scattered bifrontal lobe nonspecific white matter lesions.” And you know that in this reality, no Moskva will materialize for you.
So: You call Peter, cry a little bit, and follow his voice home.
Bob has Diane.
My mother had my sisters, Lana and Tertia.
The woman at Marissa’s school had Regina.
Willeman had his dogs.
I have Peter.
After having known Peter for more than twice as many years as I did not know him, it feels as if he has been in my life always. But there was a beginning, a moment when “our souls touched, quivering [me] to a new identity.”
Against anyone’s expectations—my own included—my love of science won me my first chance at romance: during my Matric year, I scored among the top fifty in a countrywide voluntary science test, an achievement that resulted in an invitation to attend a week-long youth science conference in Pretoria.
In a milieu populated by like-minded science enthusiasts in a ratio of ten boys to every girl, I felt different than at my all-girls school. Daring. Among total geeks, my stunted social skills suddenly seemed surprisingly adequate—or so thought a certain boy (I’ll call him Malcolm). He was light-years beyond me in social adeptness. He was also a bit older, eighteen to my fifteen, since he had stayed on at his school to do a post-Matric year.
I met Malcolm after a lecture, when our group was invited to examine a poisonous red spider from Namibia. In the ensuing scramble for a close-up view, I found myself next to Malcolm, who proved his social savvy by saying something clever about the red skirt I was wearing. Before the week was over, Malcolm and I had spun an amorous web out of the gossamer encounter—if holding hands and promising to write to each other once the conference was over could qualify as amorous.
During the Christmas vacation, Malcolm visited my family on the farm. He traveled by train to Marikana and spent a well-chaperoned week as a guest in our house, sharing my three brothers’ bedroom while I bunked with my two sisters. Despite being constantly surrounded by my siblings, by whose unending jostling for his attention I was alternately annoyed and pleased, we did have some private moments, one of which led to my first kiss.
Malcolm, in turn, invited me to his home so I could be his date at a country club dance. While I had visited the homes of school friends who moved in more elevated social circles than my family, in Malcolm’s house I found myself amidst a level of financial comfort so much taken for granted that no ostentation was necessary. The furniture, though in beautiful shape, lent the house an air of having been lived in comfortably for many years—it reeked of solidity and longlastingness and dogs. I had my own bedroom, where I was served morning coffee in bed by a staff member in a happy floral uniform with a frilly cap. Personal privacy seemed to be taken so seriously that the toilet was not only in a separate room from the bathroom, but also had a tiny entrance hall with a door before you got to the actual toilet. (Vacillating between embarrassment and admiration of Malcolm’s adaptability, I thought of him having to share our single all-purpose bathroom with the eight of us.) Mealtimes in his house brought another set of new experiences: a table set with an array of silverware at each plate, a full breakfast in the morning, and dinners for which Malcolm and his father dressed in at least a fresh shirt, often a sports jacket too, and pulled out the women’s chairs. The three courses, together with wine, all served by a staff member in uniform, were apparently as quotidian as my family’s noisy meals, served on our everyday plates and which my mother often conjured from a single fifteen-ounce can of pilchards (sardines). At Malcolm’s house, even the dogs had their own matching tea bowls—brought in on the tray with everything else—from which they were served the milky dregs from everyone’s cup before the second round was poured.
A benevolent god could not have dreamed up a setting better suited to my British-historical-romance-cultivated love map than Malcolm and his family. Thanks to the examples of non-affluent heroines handling themselves well at the homes of “quality,” I was only a bit nervous in the beginning before settling in and enjoying every minute of what was the closest I would ever come to a weekend on a Jane Austen country estate, complete with a dazzling ball. As for the sartorial aspects of the crowning evening, I wore the Matric dance dress my mother had sewed—and blended right in.
One year after the country club dance with Malcolm, I found myself in an environment as different from that experience as Clueless is from Emma: I was back in high school, this time as a senior in small-town Iowa, USA. During Matric I had been accepted as an exchange student to the United States in the American Field Service (AFS). Despite looking forward to this adventure for over a year, being in an American high school was strange, made even more so because I had by then been attending the University of Pretoria for a full semester. Nevertheless, I was still younger than most American seniors, sixteen—almost seventeen—when I suspended my university degree in July 1966 and got on a plane (my first flight) for the US of A.
During my one semester at university, I did have something of a social life. No hearts were broken, however, when I set out to live with the Henning family in Breda, Iowa. My American dad, Al Henning, was a five-foot-five-inch-tall large-animal veterinarian. He often took me along on his rounds, where I, conveniently tall, was made to hold up IV bags or hydrating bottles for cows and calves, lift a cow’s tail so that Doc could stick his gloved arm into her vulva to inseminate her with semen from a prize bull, and assist in the birth of twin foals that each had to be dragged out with handcuff-like clamps attached to a front leg on one end and affixed to a chain drawn over a pulley at the other. My American mom, Dorothy, was a “homemaker” who had a bachelor’s degree in home economics; she is the person I still try to emulate in my efforts to run our household smoothly and economically. Dorothy helped me make South African koeksisters, or deep-fried braided pastries dunked in a thick syrup, as a contribution to the “international dinners” in which I and the other exchange students participated. Joyce, my fourteen-year-old American sister—a high school sophomore—helped me navigate school and taught me to ride a horse, and Beth, her twelve-year-old sister, whom I helped with her math and who shared my love for science, completed my host family.
And then there was the America outside the Henning home.
What is there to say about an adventure that opens one’s eyes to the wider world in a way no book ever can; that even in conservative rural America, there reigned a spirit of discovery and striving and independent thought that exceeded everything I had experienced in Afrikaner-run Christian National South Africa; that, from a distance, apartheid looked far worse than it did from inside; that once you left the protective bubble of home, all bets were off. Decoding American teendom was much more challenging than the AP physics course I took.
Item: While growing up in South Africa had equipped Ignoramus Abroad with plenty of stereotypes related to race, a combination of her disinterest in sports, attendance at an all-girls school, and lack of access to American teen movies has left her innocent of the jock/cheerleader categories. I
gnoramus is astonished to see the frenzy of attention paid to school athletics, which is almost exclusively focused on boys. Girls’ sport-related ambitions seem limited to joining the cheerleading team. Those who get in are automatically elevated to the top of the female social hierarchy, which—as she soon figures out—nevertheless forms a distinct second tier to that of the stars on the boys’ teams. From these two top ranks comes the homecoming, prom, and other school royalty. The next step down in the hierarchy is occupied by band geeks, and, bringing up the rear, the Pep Club, including Ignoramus, who—before you can shout “Our Boys Are the Best!”—is declared an honorary member and presented with a Pep Club sweater.
Item: Thanks to Carroll High’s previous AFS student, a Mediterranean beauty from Greece who was outgoing and vivacious and had a stunning head of glossy black hair that she could toss as well as any cheerleader, the popular girls are inclined to—sometimes—give Ignoramus the benefit of the doubt: she is invited to a slumber party or two, but never the mixed-gender parties about which she knows through the grapevine. When Ignoramus stages the teen party that AFS students customarily hold at their adoptive homes, however, the popular girls come, bringing along the boys. They seem nonplussed by the fact that the Henning parents make their presence at the house known before retreating into the den and that there is no alcohol in the punch or anywhere else. While the music Ignoramus has carefully selected with the help of her sister Joyce goes down better than the punch, without the spike from that beverage it is just not greasing the social gears. Or maybe American kids just don’t dance? Or maybe—
Jock, approaching Ignoramus: Would you like to dance?
Ignoramus, getting up: Yes, thanks.
Jock: I’ll go see if I can find someone who will dance with you.
Item: Ignoramus is invited to the homecoming dance by a boy from her English class who is not handsome, a sports participant, or an academic high roller. He is, however, a funny, friendly, and caring human being. Neither he nor she broadcasts their date. For a reason she still cannot fathom, Mr. Knott asks her in front of the speech and rhetoric class whether she is going to the dance. Before she recovers her composure, her date volunteers that he is taking her, the look on his face that of a lottery winner. Several popular girls approach her afterwards, murmuring approval.
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