I did not breathe while a three-headed silhouette approached the bed. When Matron stepped aside, I saw it was them. I was overjoyed to see that they had brought the baby. I did not run toward them, though I lifted my face for a kiss. When they asked how I felt, I still did not meet their eyes, just said, “Goed.” Matron left, and Ma and Pa proceeded to ask more questions. I looked them in the face and answered clearly. I couldn’t explain it, I said, but I just could not talk. A knowing look played between them. When my mother put Hennie-Boshoff in my arms and let me carry him to the car, I knew I was forgiven. On the way home, and during all four days of my unscheduled hostel weekend, we never spoke about my bad behavior at all.
This episode taught me another astonishing thing about words: if you could not say them, your outside self disappeared. Inside you became the eerie cave on the farm, its rank interior littered with the bones of dead animals. Yet you dared not open your mouth, lest your raveling self burst out like thirty-eight baby puff adders only to be chopped into little pieces that could never again be put together into perfect little shiny, wriggly lives.
It would be many years before I would learn about dissociative mental disorders. The description of depersonalization in the Diagnostic and Statistical Manual of Mental Disorders IV sounds eerily like the detachment I experienced during what I have always before thought of as a voluntary episode. It was only when my children had reached the age at which I went to boarding school that I understood how the defeated slump of a girl tucking De Kleine Maja into a book bag would have placed her on a terrifying trajectory in a parent’s heart. The forgiveness I read on my parents’ faces was more likely an expression of dread—they were, I now think, wondering whether the intellect on which they were banking my future could harbor the seeds of its own destruction.
Iris Murdoch was notoriously private. She rarely gave interviews pertaining to anything other than her literary work, and then only with her guard firmly up. Her reluctance to share her life was not restricted to journalists. Anyone who aspired to be close to her had to respect her need for privacy as the sine qua non of the relationship. After meeting Bayley, Murdoch made it clear from the beginning that he would be no exception. She intended to go on functioning as an utterly self-contained person exactly as before, keeping areas of her life in compartments hermetically sealed even to him. Her need for what he refers to as “apartness” did not preclude a devotion to Bayley that he would eventually conceive of as far more lasting, generous, and encompassing than the fleeting passion shared with the men and women with whom she engaged in affairs. The marriage that resulted was, to put it mildly, unconventional. In Bayley she found the rare individual who would accept her demands, though it did not come to him easily. In Elegy for Iris, the first book in a trilogy Bayley wrote about his life with Murdoch, he describes how he overcame his unease about her lovers. “In early days,” he writes, “I always thought it would be vulgar—as well as not my place—to give any indications of jealousy, but she knew when it was there, and she soothed it just by being the self she always was with me, which I soon knew to be wholly and entirely different from any way that she was with other people.”
Given Murdoch’s well-known desire for privacy, her apparent concession to turn her journals and manuscripts over to Bayley for publication was a radical departure in her behavior. Did she give up her privacy because her fame had made it impossible to keep news of her illness from the public? Had the dementia already changed her identity or eroded her self-confidence, thereby engendering a reliance on Bayley that brooked no resistance? However it came about, through Bayley’s publication of a chapter of Elegy for Iris in the New Yorker in July 1998 and the completed book a few months later, outsiders gained unprecedented access to Murdoch’s “case” even before her death in February 1999.
After Murdoch’s death and the confirmation of her Alzheimer’s through autopsy, Dr. Peter Garrard, a neuroscientist at the University College London and the Medical Research Council’s Cognition and Brain Sciences Unit, was drawn to her as an ideal object of study: could her abundantly documented mental life yield clues of a cognitive decline not yet measurable by clinical tools such as the MMSE (Mini-Mental State Examination), a questionnaire used by researchers and medical professionals to screen for dementia? Since Murdoch wrote only in longhand, made few revisions to her manuscripts, and seldom allowed publishers to make any changes at all, her manuscripts, Garrard wrote, “offer[ed] a unique opportunity to explore the effects of the early stages of Alzheimer’s disease on spontaneous writing.” Should the in-text harbingers of insidious cognitive decline that Garrard hypothesized be confirmed, the oeuvres of other novelists, as well as collections of letters, diaries, or blogs of people later diagnosed with dementia, would become a valuable resource for study on how, in Garrard’s words, “the vast, structured network of information that endows objects and words with meaning” breaks down.
Garrard and his team analyzed the manuscripts of three novels that trisect the span of Murdoch’s career: her first published work, Under the Net (1954); a novel written during her prime, The Sea, the Sea (1978); and her final novel, Jackson’s Dilemma (1995), written before she showed any signs of cognitive decline. They compared characteristics such as grammar, narrative structure, vocabulary range, word types (i.e., nouns, verbs, conjunctions, pronouns, and other word categories), and the rate at which previously unused words are introduced.
Garrard’s results reveal that Murdoch’s linguistic creativity dwindled markedly over an almost twenty-year period, that is, since The Sea, the Sea. In Jackson’s Dilemma, he found a precipitous drop in the number of word types Murdoch used, the frequency at which she employed previously unused words, and her range of vocabulary. Remarkably, though, the narrative structure and grammar of Murdoch’s books remained essentially unchanged over her writing life, a result that confirms the findings of previous speech studies on individuals with Alzheimer’s: even as the linguistic content of patients becomes nonsensical, they continue to produce grammatically well-formed sentences.
In light of these findings, one could argue that even her unintelligible statement to Bayley—“Susten poujin drom love poujin? Poujin susten?”—retains a grammatical structure—enough to entice one to add punctuation, hunt for a code, and discover sound-alike words to substitute for the indecipherable ones.
Still, to insist that the lines must make logical sense is to deny the harsh truth of dementia: the disease progressively destroys the very self that used to be capable of love and its expression. It eats its way into your brain, into the frontal and temporal lobes where (in a healthy brain) language is logically interpreted and reproduced. It feasts on Wernicke’s area, where meaning is associated with speech sounds and the written shapes of words, gorges itself on Broca’s area, where words are systematically deployed in the grammar of a particular language to produce meaning. As the disease waxes, so you wane; as it burgeons, so you contract. Its answer to Murdoch’s question “When are we going?” is “We have already left. It is only a matter of time before we arrive.”
Ten months after being diagnosed with early onset dementia, I retired from my position as the associate director of the University of Utah’s Gender Studies Program. It was August 2011. I had not planned to retire for at least two more years. However, the memory problems persuaded me to leave on my own accord rather than risk a future day when a nervous colleague would pull me aside to discuss some serious gaffe or strange behavior with which I had unknowingly embarrassed myself or the program.
Making serious mistakes was something I feared every day. One of my significant responsibilities during my last two years at Gender Studies had been to compose formal documents about every conceivable area of administration. While our program already had policies for our own administrative and curricular processes, the relevant accreditation body for our program had in recent years started to require the documentation of all policies and procedures according to specific criteria. Since I was the go-to
person in our program for policy arcana, I led the effort to bring our program into compliance. I would write the drafts for the various policies with their legalistic definitions and mandates and exclusions, and an ad hoc faculty committee would review and approve them. This work, spread over my last two years, gave me incontrovertible proof of how much my memory had deteriorated.
In order to produce these documents, I had to cross-reference multiple existing university policies. This way of working had been my stock in trade when I wrote research papers for my PhD, corporate memos, and presentations throughout my adult life. I have always enjoyed putting together a logical, well-flowing piece, no matter what the topic. In this new project, though, I found myself haplessly, maplessly lost in a dark wood of legalese.
A new working method soon arose from the gyre of perplexity in which I was trapped: when my task spawned a question, I wrote it down on a worksheet in longhand before switching to the reference screen, so the query would not slip my mind once I got there. The corollary also held: once I found the answer, I jotted it down before returning to my draft. (This tedious method still serves me well as I write this book.) The most stressful aspect of the process was the epochs, eras, eons it ate away in slow motion. For the first time in my life I had to delegate some of my other responsibilities to already overworked colleagues in order to meet our deadlines. While I did manage to deliver the policies on time and well-enough written that my colleagues approved them with only minor changes, my ego was in shreds.
Neurological tests confirmed my experience of loss. While my scores showed that I was still functioning on a relatively high level when it came to vocabulary and verbal comprehension, my working memory left much to be desired. However, during the recursive process of writing, unconscionable amounts of backstage time enabled me to work around the memory lapses and mindboggling confusions, so that even my colleagues did not suspect the efforts that underlay my drafts. Brain research affirms the phenomenon that dementia “is known to disrupt the brain’s semantic system, but this can happen subtly before anyone has the remotest suspicion of intellectual decline.” During Iris Murdoch’s almost twenty-year mental deterioration between her prime with The Sea, the Sea and her nadir with Jackson’s Dilemma, she sometimes “experienced an intense and unfamiliar feeling of writer’s block.” I can only speculate that her blocks, like mine, were early signs of dementia.
Since our families were very close, my childhood friend Jacoba and I did eventually get together once or twice during school holidays in our standard six year. Though our worlds were growing apart, we still had much to talk about. We also argued: Whose Latin teacher was the best—her Juffrou Holtzhausen or my Juffrou van der Düssen? Who had read the most books in school so far? Whose hostel had the best food? Though I put up as vehement an argument on my own behalf as I could, I inwardly suspected that she was the winner on all counts. My parents came to the same conclusion, after apparently arguing similar issues with her parents, though undoubtedly in the polite, indirect way of adult friends. Consequently I transferred to her school, the Afrikaans Hoër Meisieskool, or Affies as it was affectionately known, for standard seven. Unlike Hoërskool Rustenburg, it was a girls-only school. That it was for whites only as well went without saying.
At Meisies Hoër, Jacoba and I were roommates, sharing with a third girl named Sannie. Everything was as Jacoba had described: the food was more palatable, and served by black waiters wearing the white safari suits and elbow-high gloves that we colonials then deemed necessary; and, humiliatingly, Juffrou Holtzhausen was so far superior to Juffrou van der Düssen that I failed my first Latin test and did not catch up to Jacoba, who was at the top of the class, until the end of the quarter.
School had become far more competitive. By then, though, I had internalized my parents’ hubris and expectations about my good brain. Besides, I really liked finding out new things. I even liked the learning by heart that was a cornerstone of South African education: I developed a study method of pleating a piece of lined paper torn from a notebook into four strips, like a fan. That would give me, front and back, eight columns for notes. Grouping the columns into adjacent pairs, I would write a question, term, or portion of a formula on the left and the answer or definition on the right. By folding the paper so that either the left or the right column of a pair faced upwards, I could quiz myself during spare moments. When I felt stressed the night before an exam, I would test myself under the covers with a flashlight after the lights out bell had sounded, rehearsing algebraic formulas, the anatomical names for the bones, or the many tenses of the six irregular Latin verbs, familiar mantras that calmed me down.
After the results of the Matric exam—government-administered tests to qualify for university entrance—were out, my science teacher confessed that she had been on pins and needles about whether I would come through in fulfilling her sevenfold dream for me. In the end I managed to carry the ultimate prize home to my parents: in the nationally administered exams, I was one of only two students in our province who received distinctions in seven subjects, though only six were required for completing high school. My name and picture appeared in the papers, and Die Transvaler even published a photo of my father, introduced by the line “This is what the father of a seven-distinction matriculant looks like!”
On the social side, too, things were looking up. With Jacoba, my other roommate, Sannie, and new friends, I was hardly ever homesick. However, my new world of overachievers created other issues. Math class, in particular, was very stressful. Juffrou Weiss was an excellent teacher, but came with a strong German accent and an unquenchable intent of implanting a character-molding Teutonic discipline into our unruly Afrikaans souls. In between striking us with her ruler, she practiced a form of shaming that somehow also encapsulated faint praise. Reading our test scores from the bottom up, she would pause for effect before uttering one of her stock statements. “En die ghres is deughr,” or “And the rest passed.”
Translation of the Transvaler’s caption: “Mr. J. H. B. Steenekamp, father of Gerda Steenekamp, was as pleased as Punch and somewhat tousled and dazed as he repeated over and over the beautiful words, Afrikaans, English, Natural Science, German, Biology, Mathematics, and Latin.”
Once in Juffrou Weiss’s class—in the middle of a quadratic root extraction—I suddenly felt overwhelmed with fatigue. To summon my energy, I relaxed and unfocused my eyes. Instantly everything in the room shrank into miniature. At the blackboard, Juffrou Weiss had become the size of my brother Klasie, her gesturing hands pointing to an equation so miniscule I would need binoculars to make it out. The sound in the room was dialed far down, too, like the way my father played his transistor when everyone but him went off to bed. I felt far away and untouchable. However, fearing Juffrou Weiss’s ruler, I forced myself back into the present.
Back at the dormitory that night, I tried to replicate what I’d done in class. It worked instantly. The moment I let my eyes hang loose, as I came to think of it, Ecce!—there was Jacoba’s bed, shrunken to the size of the slatted wooden platforms in the showers that kept us from slipping. On top lay Jacoba, as small as the doll that I got the Christmas after my father started teaching and which I secretly wished had been a microscope instead. The hostel was very quiet, except for the housemother shouting at the kitchen staff below. The sounds from my own private puppet theatre were as muffled as the sound in the Bioscope after you had slipped out to the toilet and, on returning, had to wait outside the doors for a loud part in the movie before the usher would let you in again. All I had to do when I wanted everything to become real again was to shake my head and let my eyes just look without thinking about them. Knowing I could make this happen whenever I wanted to made me feel invulnerable, as if enveloped in the full armor of God, even though by then I had embraced my father’s atheism.
My dear, I am now going away for some time. I hope you will be well.
Though I don’t choose to go to the loose-eye place any longer, “going away” is s
omething that happens to me without warning. I might be in the middle of slicing an avocado when making dinner with Peter; meeting my friends for a cup of coffee; going downstairs to do the laundry (and instead arranging my jewelry by function, metal type, and color in ice cube trays recommended by Redbook for the purpose); walking to the front door to answer my grandson’s knock (a big-eyed Hennie-Boshoff lookalike with a penchant for launching himself at my thighs so powerfully that my swooping up of his four-year-old body to my chest momentarily becomes the only grammar I can summon for love).
I do not want to go away.
Like Iris Murdoch and John Bayley, Peter and I met on a university campus. Like them, we hope to demonstrate that love can thrive in the “uncompromising familiarity” brought about by dementia. There, though, the similarity ends.
Peter and I fell in love at the University of Pretoria in a physics lecture hall, surrounded by two hundred other first-year students, when I was seventeen and Peter nineteen. Since that day, my love for him has anchored me to the wondrous reality of right here, right now. In the months and years that followed, the connection each of us felt in that first moment evolved into a—so far—forty-nine-year relationship, the last forty-five of which played amid the long haul love of marriage. Going away was far from my mind, or rather, together Peter and I were already away, borne aloft by the “holiness of the heart’s affections.”
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