“Give me this day my daily…”

Featured image: In the ruins of Pompeii, archeologists discovered a loaf of bread baked just before the eruption of Mount Vesuvius in 79 AD and carbonized  during the eruption by the pyroclastic flow. Chemical analysis shows that it was a type of sourdough.The loaf was incised before being baked by dividing it into wedges to make the bread easier to share. An indentation that circles the loaf was made by a string that ends in a loop, making it easier to carry. The loaf was stamped with the text “Of Celer, slave of [Quintus] Granius Verus.” Loaves of bread were marked in this manner before they were taken into a communal bakery. The bread’s maker, Celer, is known to have survived the eruption of Vesuvius and the subsequent blistering ash and poisonous gases—his name appears in a later list of freed slaves.

Bread. The staff of life. When my mother was far gone with dementia, the only times I saw her really immersed in something was when she was eating: her eyes did not leave her food. She did nothing but spoon and chew and go for the next bite. I remember thinking then that I don’t want to still be alive when food was my most important life pleasure. I was then in my mid-fifties. I then did not imagine that a time would come—only 7 years later—when I, too, would have a dementia diagnosis.

My mother Susan Steenekamp and I, two years before her death. “White Christmas,” when close to a hundred of my aunts, cousins and their families, and my siblings and their families gathered at my sister Lana’s house for a reunion. We wore white in memory of my father’s mother, who used to give the aunts (my mother’s generation) bolts of white fabric to make dresses for all us girl cousins for Christmas day (Groot Brak, Cape, South Africa, 2004).

During my childhood and younger years, Susan was vibrant, vital person.  On our farm in South Africa she fabricated excitement in my and my siblings’ lives with projects that cost only imagination—we seldom had even the basics of what now considered necessary for home-style creativity, namely drawing paper (or any paper at all…), crayons, paints, and so on. At the start of one school vacation, she nailed a burlap sack—rescued from its previous use of storing wheat—on the wall near our front door for finds she challenged us children to bring from the veld. I, who fancied myself a scientist, struck out with the high hopes of spotting an ape-man tooth or a gob of acacia gum turned to amber with a praying mantis trapped inside. The closest I got to a fossil, though, was an owl-regurgitated crushed-mouse-skeleton that she  sewed onto our hanging museum among my and my siblings’ motley finds, hair-pinned or safety-pinned on: red and yellow finch feathers, turquoise eggshell parts, a hooded, tight-woven finch nest, a shedded snakeskin.

My mother and five of our siblings on our Transvaal, South Africa, farm: Carel, Gerda (then in my first year at the University of Pretoria), our dog Dapper with my brother Klasie behind him, brother Hennie-Boshoff (red top), sister Tertia, and my mother. We lived in what was supposed to be outbuildings until our house would be built, but owing to 7 consecutive years of drought the house  never matrialized. My parents lost the farm after 12 years, my family moved to a small town, Heilbron, where my father went back to an engineering job and my three high-school-age siblings to boarding school (1966). My parents had their own bedroom, my two sisters and I shared a room, and so did my three brothers. Behind the house and the car you can see the start of tens of acres of uncultivated veld—my and my siblings’ playroom.

During Susanna’s last decade—then equipped with “proper” painting and drawing materials—she still made art. (One of her paintings hangs in our bedroom.) She still practised her habit of gathering shells, rocks, and botanical flotsam that flashed me back to childhood. Sometimes she crafted them into wondrous arrangements for flower pots or wall hangings. When I last visited her, her daily doings had shrunk to distracted participation in being washed and dressed, and a short-lived interest in visitors. “I have a talent for sleeping,” she’d been saying from her sixties onward. In the decade leading up to her death, she persuasively demonstrated her mastery. During her last two years or so she showed no joie de vivre of the kind she’d expressed in her autobiographical meditations that dated from just before her first serious episode outside of reality: “Angels and people sing songs of praise,” she wrote. “Who are angels and who are people? Hosanna! Hosanna!”

From Turkey, “Muddy Smile,” Alpay Erdem‘s winning entry for the “open competition” division of the Sony World Photography Awards (2014).

It is now 13 years out from my microvascular disease diagnosis. At (all but) 75, I am 7 years away from my mother’s age at her death—82. During the last 5 years—starting a year or so before Covid—my ability to experience delight in my daily occupations has been dwindling. For the first 7-8 years after my diagnosis, I still had the privilege to “fly” in my daily life: Peter and I could still have the grandkids for sleepovers; go on vacation, even as daunting a trip as all the way to South Africa; enjoy a home- or restaurant meal or visit with family and/or friends; and travel to and speak at dementia conferences. Now, though, most of my life happens in and around our apartment, where I feel the least threatened by the world. Even at home, though, I very seldom achieve the joyful buzz of stepping into the zone. Even on somewhat good days, I just feel blah a lot of the time. While I sometimes still go through the motions, I have no interest in things I used to enjoy.

From New Yorker. My loss of pleasure particularly affects my ability to be with other people: with two others, I can still manage. With more than two, I can’t follow the conversation. Add in my deafness, and I am lost. When with my children and grandchildren, I have the same difficulties. With them though, I can just bask in being in a roomful  of people who love me. In individual conversations, I still like to connect with each of them. I feel so lucky that they take the trouble to have Peter and me and and their other sibling-plus-family together for occasions such as father’s day or each family member’s birthday. With 10 people in our extended family, that makes ten guaranteed birthday get-togethers, as well as mother’s- and father’s day, Easter, Thanksgiving, Winter solstice. Christmas at least 15 times a year!  Sublime ecstasy for this atheist!

While dementia gloom is often ascribed to depression, new research shows it has two co-equal spoilsport cousins: anhedonia and apathy, both caused by cell death in the pleasure centers of one’s brain. Anhedonia is defined by the DSM-5 as ‘markedly diminished interest or pleasure in all, or almost all activities most of the day, nearly every day.’” Apathy syndrome is characterized by primary motivational loss. Emily Dickinson has it down: “The heart asks pleasure first,/ And then, excuse from pain;/ And then, those little anodynes/ That deaden suffering…” (1862). Anhedonia takes away all of Dickinson’s “asks.” The worst about such losses of pleasure and consequent lack of feeling you have value is that you frequently feel exhausted, have no energy, no wherewithal to interact with other people or maintain daily routines. Accordingly, your sense of self shrinks to the flattened smear of a smashed gnat on a car windscreen. (Profound Loss of Pleasure Related to Early-Onset Dementia.

Photo (by Sebastio Salgado, 1991) of a man who appears to have no interest in or energy to deal with daily life. As a firefighter helping fight the inferno in Kuwait (adjacent to Iraq) that resulted from Saddam Hussein’s resolve that the oil fields would not fall into American hands, the man was mentally and emotionally exhausted. As in his case, non-dementers, too, can experience anhedonia as a result of stressful circumstances. Such states can persist long after the source of fatigue is no longer present (Frontiers in Psychiatry).

Whoever has lived with or looked after someone with depression/anhedonia knows the impossibly hard work Peter puts in  every single day to help me go on. That he does it graciously and out of love does not take away the fact that I drain him with my needs. He nevertheless greets me with a kiss, a hug, and a smile every morning. He makes me glad I got out of bed. I’m ever-grateful. However, to retain just an iota of self-respect—of any “self” at all,  indeed—I have to contribute something to our lopsided relationship. But how to jumpstart the semblance of a reciprocative life when anhedonia has robbed me of the ability to want anything? When I can’t even choose between two options—go to the mall with Peter to get my walking steps for the day or stay home to have more time not to be rushed when making lunch? When I truly don’t know if I want one above the other?

Through the dementia years I have latched on to a long-held principle that still sometimes helps to get around my lack of “wanting”: Duty.

Duty, according to Immanuel Kant in his Grounding for the Metaphysics of Morals, is “act[ing] in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end.”

Doing chores is my duty. My obligation. My responsibility. Because I promised “for better or for worse.” Accordingly, “Give me this day my daily chores.”

Chore: job or piece of work that is often boring or unpleasant but needs to be done regularly

So how to discharge one’s duty? As motivational writer and speaker Admiral William H. McRaven contends in a commencement speech he delivered at the University of Texas in 2014, “If you want to change the world, start off by making your bed.”

Tracey Emin’s controversial 1998s My Bed modern artwork features an unmade bed and a floor littered with empty vodka bottles, cigarette butts and condoms. The piece gives a snapshot of Emin’s life after a traumatic relationship breakdown. It was shortlisted for the 1999 Turner Prize. In 2014, it went under the hammer at Christie’s in London and sold for $2.7 million.