“I shut my eyes and all the world drops dead; I lift my eyes and all is born again.”

Title quote: Sylvia Plath in The Bell Jar, a novel in which the protagonist descends into mental illness.

Featured image: One of photographer Tony Luciani’s countless photos of his mother who had dementia. He had been a full-time, professional fine artist since post-graduate studies in Florence, Italy in 1978. He also later also took up photography as a means of expression. After he taking on the care of his mother and moved her in with him, he started a photo project about the reality of her life with dementia. His mother enthusiastically participated and loved being his model. She was still living in 2019(?) at age 97. (I was unable to find  whether she is still living now, in 2023.)

Since our move to Wilmington Flats five-and-a-half years ago, Peter has cultivated the habit of sitting on a kitchen chair after he wakes up every morning to read BuzzFeed dispatches over his coffee.

I am a delighted beneficiary of this ritual: while I make my breakfast, he shows me fashion pages or lost-submarine images or headlines about the writer’s strike, reads out loud updates from the cornucopian megacosm from which Doña Quixote is cutting me off more all the time; together we laugh or despair over the state of the world. When I’m out of earshot, he emails me articles that he knows will interest me. The two pieces below are the gossip kind one finds on Buzzfeed and other “news” aggregator sites. I love gossip—as long as it’s not really mean. (Okay, sometimes I love that too…):

1. The Bible says nothing about coveting your neighbour’s husband (The Times of London).

2. “Telltale signs that someone grew up poor” (BuzzFeed). Between the two of us, Peter and I identified with many of the signs: “You’re always afraid to use your nice things because you might ruin them”; “paper plates and paper towels are a luxury. It is literally throwing money away”; “you pack sandwiches and other food for road trips and eat by the side of the road.”

Each of the items triggers a lovely conversation. In the one about the Bible’s typification of women as responsible for sin, we wonder what has really changed since the Ten Commandments were written down some time from 750 BCE onward? The one about growing up poor gave us a chance to swap tales: my mother making a whole meal for a family of (then) six out of  4 gallons of milk a neighbor gave us, in which she cooked something like homemade tagliatelle pasta consisting of water and flour: “melkkos,” or milk food. We ate it with cinnamon sugar. On Peter’s side, he reminisced about his mother cooking by the roadside on route to family in Cape Town; after I got to know Peter and his parents, I observed his mother in action: even when it rained or a gale was blowing, she’d still cook. In bad weather, she’d just moved the operation inside the car rather than al fresco, balancing the primus stove topped with the teetering pan on the car’s back seat to cook the bacon and eggs she had brought along for breakfast! (I have to assert here that Peter and I were white South Africans and that our poverty was nothing like the hunger our black compatriots frequently suffered and the abject conditions in which they lived. We were, however, poor compared to other white people, for example, our high school classmates. However, we each knew white people, too, who were poorer than we were.) We also discussed how these habits still operate in our lives: heck (as we say in Utah), we take along food and a fold-up kettle to Vegas! By carrying Wasa crackers, cheese, peanut butter, oatmeal, and our own preferred coffee and tea in our airline baggage, we can have breakfast in our room—supplemented with milk and fresh fruit and veg that we buy on the Boulevard—and also sometimes prepare snacks to take with us when we go to a coffee shop, so as to avoid the sugary, high-calorie items available in the likes of Starbucks, which is our go-to place for coffee in Vegas.

Gerda cooking at our camp site (approx. 1973). We holidayed near Mossel Bay, (then) Cape province, South Africa, at Vleesbaai, a tiny bay to which Peter and his family had gone for a month-long Christmas vacation for as long as he remembers. Peter’s aunt and uncle had a beach house (or shall I say “shack”?) there, which his parents had help build. While Peter and I were going steady, we used to stayed in the house with Peter’s mom and dad, the aunt and uncle, and all the cousins. This, however was our first married visit to Vleesbaai, which meant that we could finally publicly sleep together rather than on the sly whenever we managed to work that out. In vacation time, we did not want to squish into the crowded house, to which more family and in-laws were continually added. We camped at a site with no amenities, a short walk from the family house.

The other kind of missives that Peter delivers on my breakfast tray (so to speak), are mostly informational, most often in the field of science. They resonate with our lives in so many ways:

3. Brain Waves Synchronize when People Interact (Scientific American). Per the article, couples in long-term relationships often have a deep connection that allows them to anticipate each other’s needs and finish each other’s sentences. Being “on the same wavelength” is visible in the activity of the brain—neurons in corresponding locations of the different brains fire at the same time, creating matching patterns. This is the result of the couples having built the same neural pathways through repeated experiences through many years. While Peter and I certainly exhibit these characteristics, they increasingly don’t operate lately while we try to figure out our daily activities—we constantly misunderstand the other. Since we both are somewhat deaf, mishearings often happen. However, I’m talking about something fundamentally different, a chronic confusion in grasping the other’s intention and the ways we interpret the same circumstances so that they are unrecognizable to the other. I believe that the deterioration of my brain, particularly my emotional blunting, together with my resulting inability to assess interpersonal states of affairs, is the best explanation of why our communication often fails even after over fifty-three years together. In the terms used beneath the image below, my broken-down affective empathy, lack of focus, and will-o’-the-wisp motivation are probably the leading factor in our inability to understand each other.

Inter-brain synchrony during social interaction (A) External non-social stimuli, e.g., auditory, visual, and audio-visual cues (top) and (E) social behavior, e.g., language, motion, gaze direction (bottom) lead to similar brain responses, i.e., inter-brain synchrony. (B) Both individuals’ social closeness (i.e., connections the individuals have in common such as life experiences and/or family/friends), and personality traits (e.g., affective empathy, or ability to mirror the other’s sensations and emotions) affect their social engagement during the interaction, and thus the extent to which their brain responses become synchronized. (C) participants’ mental states (e.g., focus) similarly affect participants’ engagement with each other and motivate them internally to make an effort to connect to each other. (D) Such engagement can be “boosted” via extrinsic motivation (e.g., praise and approval, award or payment), which could subsequently lead to increased inter-brain synchrony.

Just this morning, we had a failure of communication when Peter took me downtown to pick up some banana bread my sister-in-law Sandi had made. Since we were on an errand run, we did not plan to stay long. However, since she lives with her dog Binx as her main companion, we always try to stay for at least a little bit of conversation. Peter would have a cigarette outside while I would go upstairs to chat to her in the meantime. We had arranged (I thought) that he would finish his cigarette and then come upstairs to hang out with us for a few minutes before we had to leave. He thought that I was going to pick up the bread, hang out a little while, and then come down. After almost 1/2 hour—rather than the 10, 15 minutes each of us actually had in mind—he called to ask where I was. I had misunderstood the plan. While communication of course takes two, in retrospect and after careful reflection I most often discover that Peter’s memory of the plan had been the one we had actually decided on. Sometimes my confusion occurred because we’d changed the plan on the way, other times because I’d had something in my head but not spoken it out loud. Knowing something about how these brain systems operate—and the ways in which they can break down—helps us not to take these failures too personally.

4. “Studying the link between the gut and mental health is personal for this scientist” (NPR). I’m so inspired by the subject of  this article, Calliope Holingue, who as a high school student suspected that her gastrointestinal symptoms (severe enough to force her to give up running) might be connected to her long history of anxiety and obsessive-compulsive disorder—this self-observation motivated her to become a professor of mental health at Johns Hopkins, where she leads research on gut microbes and symptoms that cooccur with autism, including gastro-intestinal and behavioral symptoms. Her work is being applied by other scientists to find the connection between microbiota, cognitive frailty, and dementia. Given that Doña Quixote’s gut, together with her anxiety, circumscribe my movements from breakfast to bedtime, I of course have a hypchodriac’s fascination with the gut-brain axis. Particularly after my brain spectacularly failed my gut the other day in ways not covered by the article: I accidentally took both my evening- and the next morning’s medications on the same night. (Despite our medication being in week-at-a-time boxes and clearly marked “Morning” to Night.”) All night I had felt bloated (which happens also when I take the medication at the right time), but all I could think of was to make it better was to swallow my morning medications as soon as possible. By the time Peter got to the kitchen, I’d taken a second dose of stomach stuff that is supposed to persuade my bowels into action every day—for the second time in 12 hours. Before I even got to breakfast, my bowel function kicked in with a vengeance. It went on and on until there was nothing left to expel. I was completely dehydrated, physically and mentally drained, yet I could not drink much or eat at all even after the worst was over. My energy was so depleted that I hardly left the apartment for several days. It’s taken me over a week to get back to a regular portion of food at mealtimes. I lost 4 pounds. Given, then, the overwhelming presence my gut-brain relation takes on in my life, it is very reassuring to Peter and me to see that there are scientific explanations of and ongoing research about my daily top to “bottom” difficulties.While I don’t expect to be around long enough to benefit from such research—damage that has already taken place cannot be undone—knowing there is a material reason for these issues cheer me up a lot! In theory. In the real world, though, it’s harder to deadpan situations arising from the gut-and-brain’s mutual damage…

The diagram shows the symptoms that goes together with cognitive frailty as a result of out of-balance gut microbiota, namely cell-related alterations in various parts of the body. Sarcopenia (middle left in diagram) is the gradual loss of muscle mass, strength, and function. It can greatly impact your quality of life by reducing your ability to perform daily tasks. Cortisol (beneath sarcopenia in the diagram” is our body’s “stress management hormone.” In people with a healthy gut, the adrenal gland releases normal levels of cortisol when you wake up in the morning or exercise. This hormone regulates your blood pressure and blood sugar levels and strengthens your heart muscle too. In collaboration with your brain, it helps control your mood, motivation, and fear, heightens your memory, increases your immune system, and lowers sensitivity to pain. When you are permanently stressed, though, your cortisol levels can become dangerously high to the point of causing Cushing syndrome: the symptoms are a fatty hump between the shoulders, a rounded face, and pink or purple stretch marks on the skin. Cushing syndrome also can cause high blood pressure or bone loss. Sometimes, it can cause type 2 diabetes.

A situation I recently tried to deadpan was losing total control of my bladder in public, albeit the serendipitously  rather unpopulated “public” of a store that is usually very crowded, but was relatively empty at the time: after having coffee with a friend, I wanted to use the coffee shop bathroom before leaving. However, there was too long a line. My friend walked me over to a nearby store where I said goodbye and assured her I would be fine getting to the bathroom on my own. Inside, I walked as fast as I could towards the back where I knew the restroom was. About halfway there, I looked up to check my progress and saw the sign “RESTROOMS.” “Okay,” quoth Doña Quixote,” we made it!” At that very instant urine dribbled down my leg, down to my shoes, and into them. I ran along an aisle, fortunately bordered on either side with chest-high clothing racks, and made it into the bathroom. Luckily it was empty. I reached a stall just before I completely lost it all. While I did reach the toilet, there was only a token amount of urine left by then. The kind of incontinence protection I had worn since my pelvic floor surgery did not have a chance. I was soaked. I mopped myself dry with toilet paper as much as I could. Luckily I was still alone, no one else had entered. I dashed to the wash area, grabbed handfuls of paper towel, keeping half of one bundle dry and wetting the other half. Back in the stall I cleaned up some more. Fortunately I was wearing mesh pants (with a lining) that do not show wetness. When I no longer reeked—at least not to myself?!—I ripped off more paper towel and went back into the store, sneaked through the aisle while half-assedly dabbing the floor for Hansel-and-Gretel-style drops and wet footprints. I left without telling anybody that there had been a “spill” or asking them to to bring a clean-up cart. I did not tell Peter until two days later. I did not go out of our apartment for several days. I had plenty of time to realize that going out into the world without adequate protection for more than my expected post-surgery leaks was a thing of the past for me.  I equipped myself with the next level of protection and don’t leave the house without it. I’ve also resolved to go to the bathroom by the clock rather than by the too-late signals my brain sends out. On good days I have so far remembered to do so…

5. The article titled Functional Neurogic Brain Disorders Despite No Obvious Injury (Scientific American), shows that people in the medical field, evening neurology, are still infuriatingly likely to think mental illnesses are “just in your mind.” Functional neurologic disorder (FND) refers to a condition in which a person, who had up to then functioned normally, show symptoms that include unplanned movements without the person consciously starting them, a well as loss of memory, concentration, and/or cognition. The symptoms significantly interfere with how they function and cope with daily life. The disorder is caused by a disconnection in the function of the lobes and emotional processing so that their brain is unable to send and receive signals properly. The writer of the article, neurologist Z Paige L’Erario, reports the experience of a parent whose daughter had lost the ability to walk: In the emergency room, the parent overheard the doctor who examined the child laughing with colleagues at the daughter’s  situation. A  2021 research paper, L’Erario adds, “published several anecdotes from real cases involving FND” [ that] show the story above is not the only one: “medical professionals, including nurses, ambulance drivers and physicians, sometimes treat this condition without concern, as though patients were simply faking their behavior. In my own experience as a neurologist, I have overheard doctors dismiss and laugh at their patients’ FND symptoms when they are behind closed doors.” The video below shows the experience of now Youth Ambassador for FND Hope, Hailey, when the disorder suddenly started during her high school years. After years-long collaborative treatment that included neurological-, neuro-psychiatric-, physical-, occupational-, social- and other therapies, she has now been restored to functional health.

This last article has probably affected both me and Peter the most out of all the links listed above. While I don’t think that I currently have or have ever had functional neurologic disorder, I believe that the experience of people with FND reflect how acquaintances or strangers, and even medical personnel who should know better, react to mental conditions about which they don’t know anything/enough and/or disorders that science has not yet fully explained. While neither Peter nor I feel we have been treated as abominably as Hailey in the video by anybody in relation to my dementia, we have frequently experienced how acquaintances and even supposed dementia experts do not have a clue of the disabling effect that even “mild” brain disorders can have on people who have them. Together with the this article, Peter also sent me an empathetic and much-appreciated note:

“We are learning a lot about the brain yet generally people know very little (and doctors seem to know very little as well).  I was reading this article about Functional Neurological Disorder (FND) and the way that some doctors treat this as a ‘fake’.  This got me thinking about how you have sometimes felt that you are faking your dementia. This feeling that you have I believe is primarily driven by other people’s reactions to your difficulties when they say for example that they also often forget or cannot manage to get something done like they used to.  Another extreme example in your case is the results of the brain tests that you took at the University Neurological Clinic.  By averaging the results, they determined that you have “mild dementia” but the reality of the situation is quite different as we managed to understand after we viewed Marissa’s graphs which clearly showed the issues in the various functional parts of your brain. The Neurological Clinic is the top neurological facility in Utah and clearly the best brains (!) work there. Yet they are missing the boat. The medical profession has a long way to go to better understand how the brain works but knowing everything is not a necessary pre-condition for doctors to at least understand the effects of partial failures in the brain.

“You are a very clever person with a gifted brain and even now you are able to listen to your body signals (and the brain is the core of the body) and do some analysis of the experiences you are having. This is a unique gift even though it is stinted by your growing dementia. I wish you could impart some of your experiences and understanding to the medical profession so that they can better treat mental disorders (or at least be understanding of the impacts of mental disorders on the life of their patients).”

On the topic of the often shocking lack of empathy from medical professionals, Peter’s and my brains are perfectly synchronized. As they also are in the selfie above, taken on the day our apartment’s maintenance crew was checking our floor’s fire alarms and neither of us could find our earplugs. So (without having discussed it with each other) we each stuffed our ears with squished toilet paper.

Other than triggering wonderful conversations between Peter and me, the articles he’d sent had an equally important result: they pulled me out of my sloth-like, motivation-less state after my gut and bladder disasters and inspired me to start spilling some of my thoughts in writing. I chose as this blog’s title Sylvia Plath’s lines from the poem “Mad Girl’s Love Song,” which is about how her mental illness affected her ability to live in the material world. The line “I shut my eyes and all the world drops dead” sounds like a negative outcome: who would want to live in a dead world? For Plath, however, closing her eyes—that is, withdrawing from the outside world—was a desirable state. I get it. When you are overwhelmed with stress and keep on doing things wrong in the real world, it is a relief to lock yourself into the abstract realm of your mind where you don’t have to be logical. It is the opposite case with the line “I lift my eyes and all is born again”: opening your eyes and returning to the real world can sometimes be very terrifying. Thank you, my beloved Peter, for opening my eyes in a way that I experienced as a positive outcome. Thank you for alerting me the wonders around me that I can still access as long as I can blow past the detritus that Doña Quixote keeps strewing like plaques and tangles in my head.

Mierle Laderman Ukeles, Mierle Laderman Ukeles, 1983, garbage collection truck, tempered glass mirror, and acrylic mirror. Created in collaboration with the New York City Department of Sanitation. After an academic art education, of which the last stretch took place at the University of Denver, Ukeles became the mother of three children and was immersed in motherhood and domestic labour. In her “Manifesto for Maintenance Art 1969!” she describes “two basic systems: Development and Maintenance.” The former, associated with the avant-garde and implicitly male, is concerned with “pure individual creation; the new; change; progress, advance, excitement, flight or fleeing.” The latter includes tasks generally associated with women and domestic work: “keep the dust off the pure individual creation; preserve the new; sustain the change; protect progress; defend and prolong the advance; renew the excitement; repeat the flight.” She decided to make maintenance work visible by framing it as an art practice. After returning to New York, she took a job as a maintenance worker at New York’s Department of Sanitation, where “in her spare time” she collaborated with many “care workers,” including  sanitation workers and cleaners, as well as the city counselors involved with sanitation to create and promote maintenance art. During an almost four-decade stint as official, though unsalaried, artist-in-residence with the Department of Sanitation, she completed many public projects and took a leading role in New York’s long-term undertaking to regenerate a landfill site in the city.

To end in the words of Marcel Proust: “The real voyage of discovery consists not in seeking new landscapes, but in having new eyes” (From the fifth volume of A Remembrance of Things Past, “The Prisoner” or “The Captive.” For a contextualization of the quoted sentence, check out “What Marcel Proust Really Said about Seeing with New Eyes.”)