Last week I posted here about how I organized my clothes to keep track of them. I had barely completed the organizing when SLUG Magazine contacted me to do a photoshoot for their street fashion page! Fabulous photographer Tyson Call came around last week and the results of his visit is now on SLUG Magazine’s Style page. If you click on the photos, you will see excerpts from Tyson’s interview with me. Credit for the photo above goes to TYSON CALL @CLANCYCOOP. Thanks so much, Tyson and Kathy Zhou of SLUG for giving me this adventure! Take a look at more photos by Tyson on Instagram.
My life with dementia
Main image credit: Tomás Mondragón’s Alegoría de la Muerte (Allegory of Death), Mexico,1856. There is no question that my world is shrinking. Just this afternoon Peter and I were talking about how we go out less often. That is because Peter loves being home almost all the time, and the drive to go on an outing used to come from me. Some months ago I was insatiable—I felt almost every day that I would explode from anxiety if I did not get outside to some or another interesting place, for which a mall or antique store or some other enclosed space where I could walk freely on my own would qualify. The last week or three, though, I—like Peter—was perfectly happy to stay home most of the time.
Left: Gerda taking the air at Millcreek Gardens where we buy most of our plants. Right: Gerda used to go to Fashion Place Mall all the time, sometimes with Peter, sometimes with the bus or Uber.
I hope the only reason for my peaceful homebodiness is NOT mainly that I am 1), temporarily enjoying a quieter time after all the activity surrounding my book launch and 2) temporarily inspired with the remaining tasks of refurbishing our house after the painting.
Our Lazyboy BEFORE; it is up for re-upholstery as soon as we are on top of the list…
While awaiting our his-and-her Lazyboy to be reupholstered so we can get our living room up to date, I am continuing to declutter our house—mostly my personal possessions. Mostly clothing.
I used to think of my clothes as “my wardrobe.” These days, though, the ability to conceptualize a whole closet of clothes is too much for me. I now manage my clothes by thinking of them as “outfits.” I dare not mix and match as I used to, because if I do, I lose track of my favorite combinations and accessories for, say, a particular pair of pants. Accordingly, a major part of my declutttering constituted the project of arranging and documenting my outfits. It kept me busy for weeks—I actually started at the start of Spring.
Although the project frustrated me a lot on some days when I kept getting confused and could not locate objects even though they were in my field of vision, it was overall very pleasant. In retrospect I think of each the many steps (and sub-steps) of the project as a small pleasure.
Pleasure #1: With Peter’s help, but quite a bit on my own, I photographed all of my summer clothes and wrote the combination of tops, pants, shoes, and jewelry for each outfit down on a card to help me remember what goes with what. Given how many items I threw out in my purge, my outfits had changed enough that my previous photos and cards were no longer useful.
Step 1: Lay an outfit on the bed. Step 2: ask Peter to take a photo of me wearing it.
Step 3: Buy a photo album. Step 4: Arrange photos in the album by outfit.
Step 5: Hang all items of an outfit together in closet, complete with jewelry, belts, and any other accessories. And don’t forget the note cards!
Pleasure #2: As a reward for completing the sorting and organizing of my clothes that I keep on hangers, I bought matching containers for the items on my shelves that do not stack well—such as my knee-high (panty) hose—that I have always stored in shoeboxes or baskets formerly used by my grandchildren to gather easter eggs! I usually don’t like matching things, but for an orderly-looking closet these containers do work better.
Left: After using all the containers I had bought, one set of my non-stacking items was not yet accounted for: while my light-colored knee highs found a good home in the container on the left, the space on the right—where the second shoebox for my black hose used to fit—was now too small for any of the container sizes I had bought. Right: Imagine my pleasure when I returned to the Container Store and found a container of exactly the right width!
Pleasure #3: Having dealt with the “work” part of organizing my clothes, I indulged in the even larger pleasure of sorting through the file in my study where I keep magazine tear-outs of fashion items I like. I have long wanted to make a fashion “idea board.” I fetched from downstairs an Escher-inspired print by Irvine Peacock that I had bought for the space where our grandchildren play, and hung it in my study. With images from my folder that I like a lot, I started my idea board on top of the Castle of Illusions.
Left, the Escher-style print against my study wall, below a painting my mother had made during her last visit to us in America (aprox 1995). Right, Close-up of the magic castle.
Left and middle: Gucci ensembles that I would love if I had that kind of money—and were that skinny! Right, Etro pants and “cloak.”When I first saw the pants, I was willing to pay a big chunk of my yearly “allowance” if I could only find them. I think they made only one pair for the photo shoot…
While all this was going on, I actually did have “real”work to do, but I keep prioritizing the tasks that offered the most pleasure. Almost all my life my favorite activities were “in my head”—writing, reading, learning something new. One could call them intellectual pleasures. Today my biggest pleasures are more tactile and visual. I don’t think they are in any way “inferior” to my former pleasures, though my former activities were more exacting to my brain—a full cardio workout vs a leasurely stroll. However, my fleeting pleasures don’t contribute to my “legacy” goal of completing the family history books for my grandchildren that I started shortly after Kanye (now 10) was born.
With my clothing project done, I have actually resumed working on the kids’ books. My new calmness and more frequent periods during which my anxiety abates have made the research and writing of our family history a pleasure.
The most recent page I completed for my grandchildren’s family history books—and that was at least 18 months ago.
In the past I made 3 “originals” of each page, one for each grandchild. I printed and cut the illustrations out by hand, for example the image of Alexander the Great on his horse as well as the ancient Greek coins. The bottom of the page consists of a picture booklet thad the kids can open. I have completed at least one book for each grandhild, but I can no longer manage the fine paper cutting a scrapbook-style page requires. For now, therefore, I am working on just getting the story of the Saunderses and Steenekamps written (including illustrations)—maybe the next generation will put the story on paper. Even so, it sometimes gets difficult and exhausting and hard on my brain. However, I am determined to complete as much of it as I can in the relatively good brain time I have left.
How much good brain time do I have left? Illustration accompanying article titled “Alzheimer’s linked with cerebrovascular diseases.” Oh: so my macrovascular dementia makes me a candidate for Alzheimer’s too! Enough already 🙂
The picture reminds me: it’s a pity that fall and winter are already all over the Wasatch mountains and Salt Lake City clothing stores—soon I’ll have to organize my winter outfits as well….
In my pre-dementia life, I used to travel to broaden my mind and expand my world. Nowadays my favorite place to go to is the Las Vegas Strip that, despite its representations of Venice’s Grand Canal and St Mark’s square, the village of Bellagio on the shore of Lake Como, and Caesar’s Rome; Egypt’s Great Temple of Rameses II at Luxor; the mythical Britain of King Arthur and his knights; and the right and left coasts of the US in New York, New York and Planet Hollywood, it really adds up to a very small world—it is not even a city: even though for most people the Strip IS “Las Vegas,” the world’s largest conglomeration of buildings designed exclusively for entertainment actually is a nameless, unincorporated area of real estate located in Clark County, just south of the actual City of Las Vegas.
In Las Vegas, I find the whole world in our hotel’s Starbucks…
If I had not already known that the world of travel had become too big for my dementing brain to encompass, this fact became clear to me when we went to Europe last year. While I enjoyed it very much at the time and still think it was a wonderful trip, I don’t think I would do a journey that big again. Peter agrees with me—the rewards of exploring new places have become too small to warrant the enormous output of energy it requires. On the contrary, the pleasures of going to a familiar and nearby place for a short while still outweigh the effort it takes. This time to Las Vegas we, in addition, chose the comforts of flying over the stresses of an 8-hour road trip with only Peter driving. It was luxurious to leave home at 9 am and, an hour or so later, arrive in Vegas at 9 am!
Gerda and Peter in our 33rd floor wing of the hotel. What does it say about my fashion style if my leggings match the hotel’s carpet?
Once we had checked into our hotel—Treasure Island, 3 nights free!—Peter explored a few other places up and down the strip, but my domain was almost exclusively the Fashion Show Mall. The furthest I ventured was across the street via a traffic light (with Peter as the lookout for when it was safe to walk) and over two different over-the-road walkways to get to the Venetian hotel. On our way out, we took pictures of each other in out hotel at the escalator/stairs leading to the street. While we were trying to pose for a selfie, a woman came up to us and offered to take a photo of us both. She was one of three sisters visiting from South Carolina.
Gorgeous Priscilla, Shela, and Annie: sisters from South Carolina. The photo they took of Peter and me.
Peter and Gerda explore the inside of the Venetian hotel.
One of the reasons Peter took me to the Venetian was because—since we started dancing at least twice a week— he has had a big project looking for a new dance dress for me. The day before, he sent me this photo of a dress he saw at the Grande Canal Shoppes:
Unlike me, Peter does not shy away from the designer brands.
While I loved the look of the dress on the hanger, it did not look good on me—it emphasized a waistline I no longer have. Fortunately we found another one—on sale to boot! Just as well, because Peter was not leaving Las Vegas—or the fancy store—without a dance dress for me! Were his gambling winnings burning a hole in his pocket?
Other than shopping, I involuntarily spent time talking with people. There are just so many nice people in the world. Whether in a department store, or a restaurant, or just while I was walking around, people would meet my smile and sometimes just start a conversation. Or sometimes I would ask them where they’re from or give them a compliment, and a lovely interval of communication—dare I say communion?—would light up my day.
Left: Beautiful Shear Gibbs works in the fashion department at Neiman Marcus. She makes many of her own clothes and has adopted a style that honors and celebrates women of African origin. A friend who travels to buy jewelry got her this unusual, handmade necklace. Her warmth won me over at first greeting. Right: Peter and I met this couple in our hotel’s casino. They are from Latin America (sadly I cannot remember which country) and had come to Las Vegas for a wedding. Their daughter, who had come to the same event from Hawaii, brought them these matching outfits.
Las Vegas is my oyster. I revel in the confined space of the air-conditioned mall where I can’t get too lost. If I get confused, I can always ask someone the way to Neiman Marcus. Once I’m there, I just have to walk straight through it and I emerge into the outside heat right by the escalator to the walkway that takes me across the street and into our hotel. If that fails (and it has, once or twice) I just call Peter and he either guides me home or comes to get me.
For three whole days, I had the freedom to come and go as I wanted to, all on my own. And when, after a long day, I sensed that my inner werewolf was about to emerge, like that wild boy Max I just stepped into my private boat and waved goodbye and sailed back over a year and in and out of weeks and through a day and into the night of my very own room where I found my own “wild thing” waiting for me—and, like Max’s supper, he was still hot…
Latin dancing is not usually considered a solo act. However, should you step through our red front door and come upon my husband at the kitchen sink, strutting his stuff to a bachata song while doing the dishes, it would appear as though no one or nothing else were required to increase his satisfaction: the sway of his body, his lip-syncing of the words he knows, the ¡uno-dos-tres-tap drum beats and guitar syncopations totally enter his being, so that—like Bernini’s Saint Theresa upon being pierced by the angel’s spear—the “soul is satisfied now with nothing less than God” (pp. 67-8). I hasten to say that Peter’s god—who has a robust sense of humor—partakes of the angel’s wickedly pleased expression as much as it does of the saint’s transgressively sensual swoon.
Peter started ballroom and Latin dancing when he was still in high school in South Africa. During his first year at university, he received silver merit diplomas in both ballroom and Latin in the South African Dance Teachers Association examination.
Peter dancing with one of his teachers, a Ms. Joubert whose first name he can’t recall. Peter and Gerda at a University of Pretoria, or Tukkies, dance. I wore a dress my sister Lana had made and passed on to me. My regrettable 60s hairstyle took many hours in curlers, much teasing (taking hold of a small strand of hair and pushing the hairs toward the scalp with a comb from the bottom up), and half a can of hairspray to achieve.
Peter’s and my parents in the living area of the apartment where Peter and I moved away the furniture and he taught me to dance. Peter and Gerda dancing in Mossel Bay, Western Cape Province, on New Year’s Eve at start of 1971(?)
I met Peter just as he was giving up his dance lessons in favor of more study time. I believe that his dance deprivation made someone as unadept as me into an acceptable partner! Though I had learned basic ballroom dancing at school—where the girls who knew the steps taught the rest of us—from my first dance with Peter onward it became apparent that, if I were to spend much time with him in future, I would have to up my game many, many notches. I never even had to ask if he would teach me—at the first possible opportunity in the small apartment where he lived with his parents, he rolled up the carpet, put a record on the stereo he had built himself with vacuum tube technology, booming the music through the thigh-high wooden speaker boxes that his Dad had lovingly crafted and finished with a wavy routed edge and a glossy shine.
Left, Going dancing in the sixties of our university years was a serious business: above, I applied an egg yolk face mask to make my skin baby-soft for that evening’s bokjol, or university dance. Right, All gussied up in a dress I made for the occasion. I changed the originally conventional pattern by leaving one side open to create a thigh-high slit.
My dance lessons in Peter’s home started with the familiar ballroom classics that—together with the London jive and freeform gyrations to popular beats—were then the staples of Tukkies dances: the waltz, Vienna waltz, quickstep, cha cha, rumba, samba, and charleston. Under Peter tutelage, these forms acquired counts, specific patterns, and plenty of high-armed, head-spinning turns. While I loved all of the dances, the one that thrilled me the most was the fast-spinning Viennese waltz: I have vivid memories of us twirling to the breakneck tempo of “Delilah” along a path (visible only to Peter) that weaved among the other couples, most of whom did not seem to travel much from the spot where they were dancing. After turning and turning me in the same direction until the vortex in my ear canals had built to a maelstrom, Peter would execute a change step to reverse the direction of rotation and unwind my dizzynes. Wherever he found a large enough space, he would swoop me into a gravity-defying leap that made my childhood dreams of flying come true.
While we still lived in South Africa, Peter and I kept on dancing whenever possible–fortunately possibilities for social dancing that included ballroom music was far more abundant than at the same time in the US: birthday parties, weddings, and club outings with friends were a regular part of our lives, even after our children were born. Once we had emigrated to the US in 1984, though, dancing as we knew it was a thing of the past. Fortunately we discovered a brand-new opportunity at the wedding of one of Peter’s co-workers, Manny Jaramillo: it was there that we first tried our cha-cha style steps to copy dancers doing the “bachata”and our mambo and rumba steps to approximate the “salsa.” The bachata dance originated in the Dominican Republicin in brothels and and other places of ill repute during the first half of the 2oth century and came to respectability there only during the 1960s. A 1980s and 90s wave of emigration from the Dominican Republic brought the dance to New York.
While the term “salsa” refers to a number of different dances of Latin-American origin, it also refers to a particular rhythm and dance style, “the salsa.” The salsa dance hails from Cuba and Puerto Rico, merging into one distinct style during the 1970s in New York when it encountered the disco craze. By the time Peter and I encountered these dances at Manny Jaramillo’s wedding in the late 1980s, they had spread to dance clubs and studios in Salt Lake City as well. Peter immediately signed us up for lessons.
As we entered into serious dancing the late 80s and early 90s, we made many friends with dancers from various Latin countries, whom we encountered everywhere we went. Many of our friends, too, took lessons and celebrated these dances at weddings and other parties.
The problem with dancing salsa for adults with jobs and family responsibilities is that the action in clubs really starts from 10 pm onward. As my and Peter’s jobs became more challenging and time-consuming over the years, and when he worked out of state for 3 years, our dancing became more ad hoc and we stopped learning new steps. We also got older and—hard as it is to admit—had less energy. By now I really can no longer function during the post-midnight hours of Peter’s favorite activity, and even he acknowledges the vicissitudes of aging. (I think, however, that if I were not around, he would still dance the night through—and gladly suffer the consequences the next day.)
Our current solution to keep dancing came in the form of giving up clubs as the venue, and settling for the more humane hours of dance studio lessons and social dancing—activities that happen in the early evening and are done by 10 am. (Weekend social dances, though, start at 10 pm and go past midnight—we have done only a few of those, and I would be completely down the day after.)
In addition to my and Peter’s classes, he has agreed to partner Marcella Kirschbaum (a friend of one of our made-in-America family members, Susan Anderson) in a beginner salsa class—in our circle of friends and acquaintances he is famous for being a fabulous dance lead. I tell him that, despite of the effects of decades of feminism on us females’ minds, dancing is still an area where his patriarchal tendency to be bossy is beneficial: female followers love getting strong, no-nonsense signals from their male leads. As Peter says, “I grew up in a time when the man was boss and the woman was grateful.” His maxim clearly still holds for the dance floor!
Peter and Marcella practicing their salsa steps in our dining room.
Between Peter and me, he is definitely the one who has the most mental stamina when it comes to dancing for hours. While his spirit waxes strong, his body wanes much like mine. Accordingly, between the two of us we have one sharp brain that still learns new moves relatively easily and another one that is very slow to understand the rapid instructions steps; and two bodies somewhat equally subject to the aches and pains of aging. For about a month now, Peter has had trouble with a painful foot, which has not gotten much better despite daily doses of ibuprofen. A day or two ago he succumbed to my offer of massaging his foot. I sat down across from him as he half-reclined in an easy chair and placed his foot on the towel on my lap. I asked him to point to where his pain was. He indicated the large bone just below the inflamed area shown in dark red on the diagram.
“My ankle bone,” he said.
I corrected him. “That is not your ankle,” I said. I cupped the area of his foot furthest from his toes in my hand. “This is your ankle.”
“You’re cupping my heel,” he said.
I looked at the disputed areas of his foot and could not make my head believe that the leftmost part of his foot was a “heel” and the bone below the inflamed area the “ankle.” I took his word for it, though, and tried to get my head around the his assertion. It took until after I had massaged his foot for the words “ankle” and “heel” to each return to its designated referent in a way that made sense in my brain.
So: imagine the challenge of learning new dance steps for someone who does not even know the words for dance-relevant parts of her body! Moreover, I have trouble interpreting language when spoken in long paragraphs, as during our lessons and studio practices. A non-native English-speaking instructor speaking at a pace designed to match the fast-moving music makes my understanding worse. Fortunately Peter is a very patient teacher: during the lesson, he leads and molds my body parts into the right places. At home, technology is a helpful supplement, as long as Peter again translates what his eyes see in the videos of our instructors dancing into slow words for me: he breaks each move into small parts and teaches them to me one-by-one.
Today, still, dancing with Peter is the only physical activity other than gardening that sometimes brings me to a point of transcendence. (I’m excluding sex here, because I think the pleasure one gets from it is immanent (the divine is manifested in the material/biological world) rather than transcendent (your soul rises beyond ordinary states). I think the jouissance that, for (lucky!) me, is just about guaranteed through a series of actions practiced over a lifetime between two people—is not (necessarily) spiritual, but of the body. Long live the pleasures of the body!
St Theresa’s, in fact, makes her ecstatic religious encounter with God through the angel sound like it, too, is very much of the body:
“I saw in his hand a long spear of gold, and at the iron’s point there seemed to be a little fire. He appeared to me to be thrusting it at times into my heart, and to pierce my very entrails; when he drew it out, he seemed to draw them out also, and to leave me all on fire with a great love of God. The pain was so great, that it made me moan; and yet so surpassing was the sweetness of this excessive pain, that I could not wish to be rid of it. The soul is satisfied now with nothing less than God. The pain is not bodily, but spiritual; though the body has its share in it. It is a caressing of love so sweet which now takes place between the soul and God, that I pray God of His goodness to make him experience it who may think that I am lying.”
I hope that, long after I can no longer dance, Peter will still find partners to set him “all on fire with a great love of God” on the dance floor. And wherever else his jouissance resides, be it immanent or transcendental.
This quote from the article on alzheimers.net makes me happy! If there is anything I had hoped would come from MEMORY’S LAST BREATH, it was that it would show a dementia diagnosis is not an immediate death sentence. There is much life to live after the d-word!
“Memory’s Last Breath: Field Notes on Dementia” is a testament to perseverance, a weaving together of past and present experiences and an exploration of a changing identity….Memory’s Last Breath” shows that there can be life, joy and accomplishments after a dementia diagnosis.”
Photo: Lynne Butler. Doña Quixote
Regina crown: Shen Christenson
I got a lovely e-mail from Michelle Aielli, Associate Publisher | Executive Director of Publicity at Hachette Books | Black Dog & Leventhal:
“I’m so pleased to share that the LitHub excerpt is live right now!
Here it is in all its glory – I think it came out very well: http://lithub.com/field-notes-from-my-dementia/
It is also promoted right now front and center on the Lithub.com home page! “
Thanks so much Michelle and everyone else on my team at Hachette, and my agent Kate Garrick of the Karpfinger Agency, for getting my book out in the world.