Events

Featured image: From Entities of the Threshold, Tamae Frame, figurative ceramic sculptor.

I started this post about two- to three weeks before the true danger of the corona virus became evident to (many, but not all) of us Americans. I was writing—again—about the shrinking of my world because of my dementia; grieving it again, as I have done on different levels since being diagnosed nine years ago. Now that we are living in the uncanny realm of the corona virus, it seems that shrinking has beset our whole society. Not only do people with dementia and those with other restrictive conditions such as  lupus or multiple sclerosis or organ transplant experience a shrunken environment, but even the sane, the whole, the young, and the robust among us are being squeezed into smaller and smaller spaces—physically, financially, and for many, emotionally—like the king on a chess board being checkmated in a move known as a smothered mate, choked off by its own pieces.

Before thinking more about self-shrinking in terms of our larger world, I will first—like writing workshops advise—write about what I know about the diminishment of “self”:  A ‘self’ is the inner person that reliably shows up in your life every day. Our selves are created by the continuity, meaning, and coherence that memory provides. When memory fades, your self comes apart at the seams. You no longer act the way you and others expect: I open our apartment door to go out and don’t know which way to turn for the elevator. Where did my formerly spatially rooted self go? I look left and right, dread overwhelms me. I still myself for a moment, regroup. Adrenaline rush. I can do this. At my appointment, the adrenaline boost that got me out of the house still lasts—I am so anxious, though, it feels as if my nerves are outside my skin. I take someone’s words personally, say ungracious things to kind people. I cause hurt and bafflement. Shame envelops me. I have become a stranger to myself. I cannot be trusted out in the world.

Australian-born, London-based artist Robert Mueck’s hyperrealist sculpture, Seated Woman (1999).

As a result of both my inability to trust my orientation and behavior in the social world, I am less and less able to spend extended time periods with even my closest peeps. It’s not that they would not forgive me for acting weird—they forgive me all the time—but that self-doubt and confusion requires me to have lot of alone-time to regroup and recharge my brain; it’s the only way I can regain a measure of calm and focus in order to go out in the world again another time and dare be with other people.  Some days it’s much easier and more comforting to stay forever inside the quiet cave of bed or La-Z-Girl or 704 Wilmington Flats. In quarantine from the world, one might say.

Ron Mueck, Two Women.

It seems, in addition, that I cannot always trust myself to function properly even inside the cave of our flat. I am daily reminded by Peter or my own easily noticeable mistakes that my ability to independently take care of myself is slipping. I can still clean myself up and get dressed by myself, but everything takes longer and my success is based on copious notes and the grouping of all items of each outfit together in one place in my closet. Today, I wanted to dry-clean a pair of pants at home with a kit I had bought at the grocery store. The box came with several enclosures and a sheet of instructions. I did not have the courage to even try to tackle the instructions of what to do with all the mysterious items inside. I have learned through constant confusion that my head can no longer follow instructions. So I asked Peter for help. In  less than a minute, he determined that we needed neither the plastic bottle of spot cleaner nor the wrinkle- and odor-removing spray. He found the foil-packaged cloth wet with dry-cleaning fluid and popped it into the bag provided for steam-cleaning the item in the drier. In fifteen minutes, my pants came out warm, clean, fresh-smelling, and smooth enough to not need ironing. It was a good start to my day—despite having had to lean on Peter’s smarts, my head got the endorphins as if it had achieved this all by itself! Adding to the helpmate-fabricated head-chemical cheer, was that I now again had clean pants to wear—despite the trouble I experience getting dressed or organizing my clothes, “playing with my clothes” is still a creative occupation open to me and one of the things I most love doing: gentling some of my favorite worldly possessions onto my torso and feet and ears and neck! Seeing an outfit work is a much quicker route to a sense of creative accomplishment than, for example, writing a blog post!

The first two photos are of me at home, and the last one at City Creek Mall—in the good old days of about two weeks ago when we could still walk around the shops!

My grappling with the affairs of daily life in things like caring for my clothes and dressing—even with Peter’s all-time help—reminds me that the day when I will no longer be able to indulge my own eccentric and peculiar vanities and affectations will be upon me sooner rather than later. This awareness constantly rekindles some important questions: what can I ask of people who love me in relation to caring for my body when I can no longer do so myself? Should there be a period when I still care about how I look, despite not being in charge of my style, is it reasonable to expect people who love me—or even people paid to care for me—to dress and coiff me in the style I am accustomed to? My answer is a loud NO. I explicitly desire that my loved ones expend no energy for anything inessential—the essential care of a person’s body alone takes hours of caretakers’ time. Even showering and dressing a (still continent, let’s say) person with dementia, when they can no longer “help” by initiating actions like lifting the correct leg to put into the pants or opening up their arms for reaching into a sleeve, takes a lumpen amount of time. Incontinence makes the tasks an altogether more monstrous responsibility.

Ron Mueck, title not known. I am struck that the largeness of the woman’s vanity needs dwarfs those who help her achieve it.

I would want my caretakers to NOT do anything about my appearance other than throw a track suit (a blingy one would be good!) onto me and keep my hair in a style that will need only the fluff of a towel after my shower to be done for the day! While the blingy tracksuit can wait, I decided to immediately start experimenting with fluff-of-a-towel haircuts: I took this picture to my longtime stylist, Todd Bertagnolli of Salon Zazou, and told him to chop away:

Although Todd did exactly what I asked and I loved the shortness, it did not work for my hair at all—my hair does not cooperate to form a buzz. Instead, some patches on the sides decided to lie flat, others to stick out haphazardly. Behind my right ear was a patch of hair so fine it looked like a bald spot. The top of my head formed into a wannabe mohawk, settling into a chevron of which the center kept trying to lift off. It did not feel like an acceptable self. After just a day, I implored Peter—who has been buzzing his own head for many years—to buzz mine too. He was terrified to touch my hair, afraid of the consequences if this cut, too, did not work for me. I promised him I would love my hair no matter what it looked like. (He already knows I would love him no matter what it looked like!) It is a testament to his trust of me that he believed me and started up the clipper.

As the cut progressed, we decided, on Peter’s suggestion, that he shouldn’t cut off the hair on the top of my head. This photo shows an interim stage—after showing me the back of my head, he cut upwards and sloped the hair length for about another inch.

I love the end result. I experienced a brobdingnanian sense of my Gerda-self and my Doña Quixote-self coming together in my outward appearance. My trimmed-down outward self seemed to mirror my inside self in a way that felt honest and humble. I felt biblically put-back-together: there was still love and goodness in my world despite the fact that it (I) had been downsized. I felt like Job, who, after his own and his children’s flocks and servants were stripped away by raids, a fire that fell from heaven, and massacre, 20 …stood up, tore his robe, shaved his head, and said, “Naked I came from my mother’s womb, and naked I will return.” And it was a what-you-see-is-what-you-get feeling.

Choi Xooang, Listener, 2011. Hi Fructose: The New Contemporary Art Magazine says that the fine detail and often grotesque style of Seoul-born South Korean Choi’s hand-painted oil on resin, wood, and polymer clay sculptures is his method of displaying” life’s wounds and scars.” “I try to express the anxiety of the human being,” Choi says.” Removed of (unnecessary) embellishment- clothes, style, and trends- these figures stand as individuals. If one feels uncomfortable physically or mentally when viewing my work, I would say it worked.”

No sooner had I gone through this outer-and-inner melding experience when the corona virus hit. I admit to an initial sense of new loss after our family decided, almost two weeks ago now, that our three family units would not communicate with each other in person, but only through video conferencing and the occasional “drive-by” so Peter and I can talk to our grandkids from our car to their driveway, or drop off food or other little surprises. Very soon, though, my sense of “poor deprived Ouma” was totally overcome by 1), relief that Peter and I would in no way increase our offspring’s chances of picking up our corona-cooties, and, 2), pride in the way my children and their families were managing to continue their work from home (except for teacher Cheryl who went to her school to prepare lesson packets for her students and distribute food and computers to those who needed it), supervised the grandkids’ school work, and kept up the spirits of their families with exercise, games, and other forms of cheer.

My original thoughts for the post (which I have now adapted into this one) were stimulated by a trip with my bestie Shen to Utah State University in Logan where I was invited to speak about my memoir Memory’s Last Breath: Field Notes on My Dementia in the literature class of English professor Jennifer Sinor. Jennifer is teaching a course focused on “Grief Writing,” a sub-genre of memoir that has become the object of study in the fields of literature and psychology.  An important idea in memoirs of grief  is “ambiguous loss,” or the kind of grief associated with situations “where there is grieving but no closure,” such as the unfinishable mourning that accompanies the disappearance of an airplane off the radar and the resulting presumed death of passengers that are never found; soldiers missing in action; a child abducted; and also people affected by mental illness—dementia for example—where people “incrementally disappear” (Krista Tippet’s On Being interview with Pauline Boss on ambiguous grief, “The Myth of Closure“)

I met Jennifer Sinor (left, above), author of Ordinary Trauma (in 2018 at Sam Weller Book Works in Salt Lake City when we were both finalists in 15 Bytes’ book award in creative non-fiction. Between us in the photo is University of Utah Biology alum Brooke Williams, who won the award for OPEN MIDNIGHT: WHERE ANCESTORS & WILDERNESS MEET (Trinity University Press).

In hindsight, the materials about ambiguous loss that I read for my visit are eminently applicable to the huge, but (I hope) temporary loss of jobs and companionship and the simultaneous knowledge that the loss of people we love would be greater than that of our “freedom.” Also, while I and my family are privileged to still have jobs and an income (though Peter and I see our shrinking daily on the stock and bond market!), in our circle of friends and acquaintances–and in our wider apartment community in Wilmington Flats—people have lost jobs and many young people have moved out of our block. My heart and thoughts are with them, and those of you who are experiencing a much larger shrinkage of options that I ever have.

A passage from one of Jennifer’s class readings, Mark Doty’s memoir, Heaven’s Coast, about his partner Wally’s death of AIDS, spoke to me about the grace and luminosity that can still attend even the darkest times. Doty describes his visit, after Wally’s death, to the first other person he would see “really sick” with AIDS after his lover. Upon walking into Bill’s hospital room, Doty’s apprehension changes to relief and appreciation. “Not because he looks well—always a boyish man, he has become a large child, extremely thin, his head shaved, his lesions darkened against his pale skin, his eyes enormous—but because he is what people are, sometimes, very late in their lives: so fully himself, himself all the way to the edges….Bill is beautiful to me..in the way that all things which are absolutely authentic are beautiful. Is there a luminous threshold where the self becomes irreducible, stripped to the point where all that’s left to see is pure soul? Here, in unfailing self-ness, is no room or energy for anything inessential, for anything less than what counts.”

Sam Jinks’s hyper-realistic pieta rings with unexpected sublimity in our days of corona virus: how wondrous that, in the normal course of our contemporary lives, those who want to can be with the old and sick when they die, hold their hands, hug them, lie next to them. In coronavirus times, so many people are deprived of that option and people die alone or, if they’re lucky, with kind medical strangers. The title of Jinks’s work, Holding the Dead, reflects the magnitude of what our society has lost in this respect.  (Jinks is known as the “shrinking artist,” since he works to a scale that is slightly smaller than life. But his insight that being with the dead is a privilege swells my heart. )

My wish, for you, my reader friends, is that even in these complicated times you will still live in the holiness of your hearts’ affections (Keats) and in expectation of a better future for yourself and all of those you love.