Undiagnosis: I am so upset I can’t even joke about it…
…but, after many weeks, I’m attempting to at least write about it:
I have been UNDIAGNOSED: I almost certainly don’t have microvascular disease, which—for the past 9 years—my doctors and I had thought to be the reason for my dementia symptoms.
The shock of undiagnosis came last month, when the results of a recent MRI came back: the number of brain lesions seems to be almost exactly the same as the nine-years-ago image of 2011. Given that my symptoms had worsened, the MRI results seem to confirm that microvascular disease could not be the reason for my increasing memory loss and disorientation.
Untitled, Basquiat
Being undiagnosed of course does not mean that I got my memory back, or that my other symptoms disappeared, or that I no longer have a serious mental disorder. On the contrary, my doctor ordered the September MRI because I have become even more dysfunctional in my everyday life. I now get so disoriented while walking in the two formerly familiar malls that have been such a haven of independence to me these last years, that it sometimes seems more trouble to go there than just sit at home. Peter, my kids, and my American family have also noticed my faster downhill stumble: I change topics in the middle of a sentence. I drift out of conversations without noticing. In the middle of going somewhere, I ask Peter where we’re going and he tells me “the doctor, Starbucks, grandkid night.” A minute later I ask again. Again. Again.
Before continuing about my difficult time accepting my undiagnosis, I want to say that I don’t blame my doctors for coming to the conclusion 9 years ago that I had microvascular disease. Their interpretation of the evidence made sense to me, and still does: my MRI came back with a number of lesions. Although this was a crucial piece of information, it alone could not lead to a diagnosis until it was combined with the other evidence that had been gathered: my pitiful performance on the neuropsychogical tests; and, the clincher, my mother’s history of lots of little strokes, some so small the people in her care center did not observe them, but noticed continuous little downward jumps in her abilities.
Even before trying to understand my own feelings about my misdiagnosis, I felt a bit better after discovering that I was not alone: between 20 and 30 percent of Alzheimer’s diagnoses, for example, are found to have been in error.
In an article titled “The pain of being misdiagnosed with Alzheimer’s is more common than we realize, doctors say,” Angela Neustatter reports the case of a man—who gives his name as Martin—who was diagnosed with Alzheimer’s about the same time I was with microvascular disease. His reaction to being diagnosed with a dementia could have come out of my own mouth 9 years ago: “From the moment I saw myself as an Alzheimer’s patient, I began to dismantle my life and my dreams of the future” (The Telegraph, 2018)
After undergoing more tests and scans over a period of three years, Neustatter said, Martin received totally unexpected news from his doctor: she told him categorically that he did not have Alzheimer’s. Since, in parallel, Martin’s memory and other symptoms that let to his diagnosis did not get worse over 3 years, he should have been jubilant about his reprieve. He should have jumped at being able to resume the life and dreams he’s had before his false positive. Martin, however, was unable go forward. “In one sense it was a relief, of course, but in another I just didn’t know what to think. Could I really trust that Dr Mummery had it right?” he says. “I felt very bewildered, unsure of everything and my mood remained low, which is not like me. I’ve always been very upbeat, busy, interested by life.”
50-cent-Piece, Jean-Michel-Basquiat, 1983
Neustatter reports that Martin’s confusion and sense of being psychologically displaced did not lift for months. His doctor referred him on to a clinical psychologist, with whom he has rebuilt his confidence and faith in a good future. “She helped me see that when something like my diagnosis happens, you have to regain the ability to be the person you were before.”
Unlike Martin’s, my misdiagnosis does not suggest that I could—at least not right away—expect “to regain the ability to be the person [I was] before. Even if I don’t have microvascular disease, my deficits remain the same. My inability to complete any task still makes my days a nightmare. My efforts to backtrack, regroup, calm my anxiety, and start again use up almost all the mental energy I have at my disposal every day.
Onion Gum, Basquiat, 1983
When I think rationally about my undiagnosis, I find it hard to understand why NOT having microvascular disease feels like a blow almost too hard to bear. Many people to whom I tell about it also don’t get it. After all, nothing in the real world has changed. Whatever the name is of what I have, I should be able to continue on the path of acceptance and peace that I had carved out for myself and my family over the past 9 years. But I cannot.
Maybe by writing out the ways in which my undiagnosis makes me feel awful I can start I finding a way out of my funk.
The Wire, Basquiat.
Uncertainty. I no longer have a diagnosis. With microvascular disease, I had studied the path of my expected decline and adjusted my expectations to it. Now, once again, I don’t know what it is in my brain that has so shrunk my self, my life, my future plans. In the absence of observable diagnostic evidence, I cannot assert that I have dementia, despite my dementia-mimicking symptoms. All my old questions came back, churning my head into even a bigger mess than the first time. Have I been faking my dementia? Rather than dementia, do I maybe have forms of depression and anxiety that could result in symptoms similar to mine? Do I have a Vitamin B12 deficiency? If I still have dementia, is the path of my downhill plunge different from the one I expected with microvascular disease? If I have a different kind of dementia—one for which medications exist such as Alzheimer’s—how much of the function have I lost might have been saved by 9 years of taking medication?
The white spots on my MRI were weirdly comforting: my disease was an observable material thing. I was not imagining or making up my symptoms. I did not suffer from a “character flaw.
We all, of course, have uncertainties. Psychological and neurological studies of uncertainty, however, show that some of life’s uncertainties stand out as especially difficult to come to terms with. Haven’t we we all seen lists in magazines of the top x most stressful events in life? Psychology even has a numbering system that indicates a hierarchy of stressors: the Holmes and Rahe scale predicts the likelihood that each incident will lead to stress-related illness. Here are the top ten with their scores.
- Death of a spouse (or child*): 100
- Divorce: 73
- Marital separation: 65
- Imprisonment: 63
- Death of a close family member: 63
- Personal injury or illness: 53
- Marriage: 50
- Dismissal from work: 47
- Marital reconciliation: 45
- Retirement: 45
These are uncertainties that we all live with. To become a mature person, you must be able “to tolerate, on all sorts of planes, uncertainty and not knowing” (Hazel Johns, psychotherapist). Unpredictability and uncontrollability are, after all, central features of being alive. Mature adults expect of themselves (and are expected by society) to work through these events at least to the extent that their lives and those of the people they love can go on.
Untitled (Two Heads on Gold), Basquiat,,1982
The stressor listed above that relates to my situation is “personal injury or illness”; it rates only 6th on the list. Given that I have already spent many years working through the fact that my body will last longer than my mind, one would think that trading one dementia for another cannot be all that stressful. But to me it is one of the hardest things I have gone through in my whole dementia saga.
We all know that uncertainty is stressful. But what’s not so obvious is that uncertainty is more stressful than knowing something bad is definitely going to happen. According to a 2016 article by Marc Lewis in Psychology Today, we are actually hardwired to hate uncertainty.
In short, when faced with an uncertainty in which a choice of action has a 50:50 chance of being right or wrong, Lewis reports, our brain “activates the sympathetic nervous system—the fight or flight system—which opens your sweat glands, dilates your pupils, and energizes the action-oriented muscles throughout your body.” You have become maximally alert to even the slightest cue that one choice might be better than another; your body is optimally prepared to act toward the best outcome. However, when an uncertain situation cannot be quickly resolved, the brain continuously activates the fight or flight system. A continuous state of anxiety and/or depression results.
Skull, Jean-Michel Basquiat (1960-1988). The skull here exists somewhere between life and death. The eyes are listless, the face is sunken in, and the head looks lobotomized and subdued. Yet there are wild colors and spirited marks that suggest a surfeit of internal activity. Developing his own personal iconography, in this early work Basquiat both alludes to modernist appropriation of African masks and employs the mask as a means of exploring identity.
Imago
Carl Jung (1875 – 1961) was the first psychiatrist to use the term “imago” for the image of yourself in which you have invested emotional, intellectual, and “soul” energy. The imago is not necessarily the image by which others see you, although it is strongly affected by the opinions of other people: in other words, your imago is constituted from the feedback you get from your culture. The imago also includes an idealized representation of the person you strive to be: kind, honest, hardworking, helpful, funny, and so on, whether you currently live up to that idea of yourself or not. As you can see, the idea of the imago slips into that of identity.
Fallen Angel, Jean-Michel Basquiat, 1981
For the past nine years, being a person who has microvascular dementia has been a part of my imago: realistic, honest, positive, open, still somewhat intellectual, trying hard to be my best, striving to be kind, and so on. In accordance with this identity, I have have been offering my experience and feelings about having dementia to everyone I could con into listening. I called my oversharing “advocacy.” I wrote a book, in which my state of having a dementia diagnosis gave me credibility. For example, as part of establishing the truth of what I wrote to my agent and my publisher, Hachette, I sent them copies of the neurological report on my first MRI so they could see for themselves that I had visible lesions in my frontal lobe. Since the publication of Memory’s Last Breath, I’ve been speaking publicly about my “microvascular dementia” at medical conferences, nursing schools, and geriatrics departments! What is my credibility now that I no longer have a diagnosis? Do I have the integrity to speak at my next conference, one at the University of Missouri in December?
More about my specific diagnosis and my identity. For the past nine years, microvascular disease has been a part of my identity. In my memoir Memory’s Last Breath, as well as at my conference- and other presentations, I have always made the point that I have microvascular disease, NOT Alzheimer’s. While Alzheimer’ was the leading cause of dementia, my malady placed second. Together with other microvascular dementia sufferers, I bewailed the second-place status that prevailed for our disease: while the Alzheimer’s crowd had potions to temporarily slow down the progress of their deterioration, we had nothing. I was also jealous about all the activism happening under the umbrella of Alzheimer’s: the annual “Walk to end Alzheimer’s,” Maria Shriver’s “The Women’s Alzheimer’s Movement,” and so on. It was clear that in contemporary culture—that is, in the minds of most the people I have spoken to over 9 years—Alzheimer’s IS dementia.
Alzheimer’s, in fact, is only one of many forms of dementia. The diagram shows the top three forms of dementia after Alzheimer’s; the forms of dementia shown as orange, green, and red on the diagram, also affect cognitive capacity to the point of erasing a person’s identity, but each has somewhat different symptoms and progressions.
Like Alzheimer’s, Lewy Body and frontotemporal dementia are able to attract research money. Lewy Body’s similarity to Parkinson’s ropes it in under the umbrella of the Michael J. Fox Foundation, where much research is happening. Lewy Body also has its own Association, plus a list of Research Centers of Excellence. Because of the particular awfulness of frontotemporal dementia and because it is the dementia that affects people under 60 more than any other, it also draws research money.
As regards microvascular dementia, “there are relatively few studies on vascular dementia treatment and no compound has been approved by any regulatory body for treatment of vascular dementia.” For these reasons, therefore, my insistence that people must know I have microvascular disease was a badge identifying me with a conceptual minority that was underserved in dementia research.
Untitled, Basquiat
After I started noticing serious memory issues from my mid-fifties onward—that is, before my 9-years-ago diagnosis—I existed in a Schrödinger’s cat style box, in which the me with dementia AND the me without dementia simultaneously existed. The me with dementia and the me without were superimposed on each other. I could not think of myself as purely one or the other. Once the observations of my brain had collapsed the states so that only one was certain, I became the me with dementia. I was a dead cat! Over weeks and months, I adjusted my imago accordingly.
Speech bubble: “Being simultaneously dead and alive in the box gave me an incredible perspective over life, the universe, and everything. And I am here to tell it to the world.” Gerda: “If only…
Vision. For me to keep going, the “me with dementia” alone could not be the crux of my imago. To expand my imago beyond the diminishing me—much of this happened subconsciously— I employed the parlance I’d learned during my sojourn in the business world: I needed a “vision” of myself. According to psychotherapist Rosabeth Moss Kanter, “A vision is not just a picture of what could be; it is an appeal to our better selves, a call to become something more.” In other words, visualizing oneself in a specific manner is a means of control in an uncontrollable situation.
To attain personal vision that appealed to my better self, I had to distance myself from microvascular me. Accordingly—still subconsciously—I created an alter ego to take on the burden of my dementia. I named her Doña Quixote, after the eponymous medieval knight who mistook windmills for enemy soldiers. When Peter one day brought home a Halloween skeleton the size of a 2-year-old, I immediately recognized it as Doña Quixote. I dressed her in a style of which I approved, donated jewelry, displayed her in our kitchen. When she became particularly obnoxious, I banished her to the stoep by the back yard. Creating an avatar totally separate from myself is, of course, is not entirely possible. Despite my aversion to her, she has latched onto me like a shadow. But she still helps a lot.
The latest incarnation of Doña Quixote, donned up in Halloween garb. She sits between some of the flowers that I got for my 70th birthday. Her seasonal costume is a surprise birthday gift from the CKANs, i.e., Cheryl, Kanye, Aliya, and Newton.
Djuna Barnes—one of my favorite writers, best known for her novel Nightwood (1936)—summarizes in a few words the ideas above that took me many pages to do: “An image is a stop the mind makes between uncertainties.” In the imago/identity/vision I described above, I had a resting place, an apparently stable launch pad from where to continue launching my best self into the world.
Chicken with rice, Basquiat
Since my undiagnosis, I feel much more uncertainty than the time before my first diagnosis: rather than being incarcerated in a Schrödinger’s style box where only two possibilities are superimposed—i.e., me with dementia/me without dementia—I am in a whole new world of unknowingness: I now could have one—or more—of the baker’s dozen dementia types among which neurologists try to distinguish in order to make a definitive diagnosis.
The most-often encountered dementias that my doctors would have to consider to come to a definitive diagnosis.
I have left the dual world of Schrödinger’s cat. I have been thrown into the multifarious world of quantum computing where, in the latest 20-qubit version, millions of superpositions can co-exist at the same time.(See “Quantum computing for the qubit curious” (2016) and/or “IBM’s latest quantum computer is a 20-qubit work of art.”)
I am immersed in a quantum box of Schrödinger’s cat, where I could have on or more of the expansive array of dementia types.
Or, to make the metaphor more domestic,
While I am still not laughing, I have processed my new situation to the point that I have a “vision” for the next months of my life. I am now a patient at the University of Utah’s Neurological Disorders and Imaging Clinic. The doctors I have met so far are extraordinary talented, have marvelous people skills, and communicate all my my results to a whole team of experts. So far I have had another MRI as well as a 3 ½ hour neuropsychological test that all but wiped me out. I have not yet received the results.
She Installs Confidence And Picks Up His Brain Like A Salad, Basquiat, 1987
While awaiting the “big” results from the Clinic, Peter and I have received a small bit of information that we did not have before. This is how it came about: my U of U doctors suggested that I get into a “Research Study on Cognition and Brain Imaging for Older Adults” currently being run at the Clinic. To qualify for the study, a person must have “intact cognition, mild cognitive impairment, or Alzheimer’s disease.” My doctors sent my information on to the principal investigator (PI) of the study to see if I qualified.
Reader, I flunked: I apparently have neither intact cognition, mild cognitive impairment, nor Alzheimer’s. My symptoms, the PI explains, are too atypical to be meet the study’s requirements. For what it’s worth, this new information means that I probably I do not have Alzheimer’s.
But the investigation continues. Whatever the outcome, I have now made the image below a part of my “vision”:
Note: The featured image of this post: Untitled, Maurizio Cattelan, installation,1999
Aliya Saunders, 9 years old, guest post: “This is about my ouma and oupa and me”
Since Doña Quixote has had me locked up in dementia jail for many days during the past weeks, I did not have the wherewithal to do any writing. Fortunately, my granddaughter Aliya stood in for me by writing and illustrating this post. Aliya is 9, a great student, a voracious reader, a bodily-activity fanatic able to do cartwheels with a no-ground-touching cast on her foot, an artist, and a fashionista. Here is her post:
Ouma and Oupa come to see me shoot goals at my soccer game
Sometimes I play goalie I love gymnastics
I love painting and drawing. I draw most of the time that I am not playing outside with my friends, doing chores, doing homework, or paying attention in my class at school.
I made a sculpture for Reflections at school. In the middle is my ouma’s brain. I made long strings like spaghetti and twisted them on a ball of clay to make my ouma’s brain. My oupa’s hands are on the sides to protect Ouma. For Oupa’s hands,I bent my own hands and pressed the clay on top of them. Then I peeled it off and made it smooth. I wrote on the wooden board My Oupa helps my Ouma because she has dementia.
My whole family helps to take care of my Ouma when she gets tired from her dementia. Back row, left to right: My aunt Marissa, Ouma and Oupa, my dad Newton and my mom Cheryl, and my uncle Adam, Marissa’s husband. Front row, my cousin Dante and me. My brother Kanye is on the other side.
I made this portrait of Ouma when I was eight. She is happy. She loves jewelry and I do too.
A RadioWest “Staff Pick”: short film series about Gerda and her family’s life with dementia
Featured photo: The RadioWest team, Elaine Clark, Kelsie Moore, Doug Fabrizio, Benjamin Bombard
RadioWest and I go way back. In 2001, Doug Fabrizio interviewed me on his then brand-new “intelligent” show about my book of short stories that dealt with my family’s emigration from South Africa to Utah. Doug had thoroughly read my book (no, studied it), prepared thoughtful questions that brought out nuances that mattered to me, and treated me with utter respect. Little did I know then that I would eventually participate in a film project with this kind, meditative professional, and that RadioWest would play a momentous part in a life challenge more difficult for me than immigration: my diagnosis—in 2011, at age 61—with microvascular disease, after Alzheimer’s the leading cause of dementia.
Trans ī re, or The Passage, Frederick Raddum (2017). (“Powerful Bronze Sculptures Tell the Story of European Migrants in Search of Utopia“.)
As I was putting the finishing touches on my memoir, Memory’s Last Breath: Field Notes on my Dementia, Doug and his producer, Elaine Clark, invited me to participate in a series of films about how my family and I are living with my dementia. That’s how RadioWest became part of my dementia journey and advocacy. After five films and a radio interview, I count Doug, Elaine, and videographers—first Josh Weathers, then Kelsie Moore—as part of my made-in-America family. Doug’s sensitivity to my emotions allowed me to open my heart. The whole team’s preparation for hours-long interviews with me and my family was unbelievably thorough. Their knowledge of dementia went much further than the information in my book. The interviews were at times very emotional. Doug, Elaine, Josh, and Kelsie were sharp observers of my psychological state, and frequently offered to stop if the discussion was too much for me. I felt respected—and loved. Filming time was marked by deep—I can say spiritual—connection, tears (not only me), lots of laughter, and total professionalism—not easy to pull off while they filmed me in weird situations, for example, as I struggled to shower and get dressed!
From left, Gerda, Elaine Clark, Josh Weathers, Doug Fabrizio in our kitchen/dining/entrance at our Roberta Street house.
Since my diagnosis, I have learned that I have thirty thousand Utah dementia buddies. Alzheimer’s/dementia is the fourth leading cause of death in Utah, while it’s “only” the sixth leading cause of death in the U.S. Moreover, ours is among the ten states where dementia is increasing faster than in the rest of the country—a 40 percent increase of dementia patients is predicted over the next seven years in Utah. Nevertheless, my experience (and that of the Alzheimer’s organization) shows that many Utahns with dementia in the family do not talk about it.
My peers at my Utah Alzheimer’s Association support group and I have experienced the stigma and shame associated with dementia in our state. For this to change, our citizens have to know more about dementia. Because of RadioWest’s videos of me and others with brain diseases and radio interviews with experts in the field—for example, David Shenk, who wrote The Forgetting: Alzheimer’s: Portrait of and Epidemic—thousands of people have been reached in Utah and elsewhere, as is evident from the people who recognize and talk to me in the library, in Costco, in Las Vegas, as well on the Champs d’Elysées in Paris where a French citizen stopped me to ask if I were the woman in the dementia films featured in Slate.
Pierre Bachelier, who recognized me on the street in Paris after seeing a RadioWest film. He now has newly graduated as “maybe the the only cool tax lawyer ever” from the EuropaCollege in Brugge, Belgium.
My story, of course, is just one of the hundreds that RadioWest has told on radio or in film. Their programs about people who cope with mental and physical challenges have been an education for me, as they are for my fellow Utahns as well as out-of-state-ers. My goal since my diagnosis has been to make a positive difference in the lives of people with dementia and those who love them by showing that my life is still very happy. RadioWest is helping me realize my goal.
Climbing the Clouds, Fredrik Raddum (2019).
Doña Quixote gets a makeover
Featured image: Cosmopolitan: skeleton makeup tutorial
In August 2016, I signed the contract that granted Hachette Books the rights to publish Memory’s Last Breath: Field Notes on my Dementia. It came out in June 2017.
During the writing of my book, I created a character, Doña Quixote, to represent my demented alter ego. On her I heap the blame, shame, anger, frustration, and embarrassment that dementia rains on me. She is the avatar of my disease, she lives outside of me. She is the culprit of all that is wrong with my brain.
The Broken Column, Frida Kahlo (1944). “Although her whole body is supported by the corset, Frida is conveying a message of spiritual triumph. She has tears on her face but she looks straight ahead and is challenging both herself and her audience to face her situation.”
By distancing myself from my dementia in this way, I can still think of myself as the former me and thereby retain my dignity and self-confidence—sometimes.
My Nurse and I or Me Suckling 1937)
Within a week after I signed the book contract, Peter came home with a very special gift for me. He’d found her at Deseret Industries (DI), the Mormon Church’s thrift store. “This is Doña Quixote,” he said.
I was so touched and excited that Peter recognized her and brought her home! I immediately loved her rattly frame, a mobile of bones the size of a two-year-old. A day or so later, I found a hat that had her name on it. To complement her headgear, I donated some jewelry—and voila, Doña Quixote was decked out in a style of which the aesthetics resonated with my own. At first we dangled her from a ceiling hook in the kitchen, from where she presided over the chaos of spilled coffee, dropped milk bottles, oven-burned hands, dinner-preparation finger cuts, and misjudgments of where the counter ends, with its resulting splatter of glass shards.
As the months passed, she gradually outwore her welcome in the kitchen: her ghostly feet mussed my hair every time I passed by her near the back door. I could care less about my hair, but what I couldn’t bear was the anxiety-laden jumpy state that her sudden gentlings provoked. My brain interpreted them as attacks, since I continually forgot that the Doña was their unwitting source. As a result, I experienced heart-stopping frights, each accompanied by a hair-raising flight-or-fight response, more than once a day. Either she or me had to go. Since my assisted death is still far in the future, it had to be her. With mixed emotions, I banished her to our back stoep, where, in the company of the quail and squirrels—I tried to convince myself—she would be as happy as those dogs in dog heaven.
The day Maria Shriver’s film team came to our house in Roberta Street. Doña Quixote is hanging from the stoep’s rafters, right above the camera.
On the publication front, Hachette was somewhat concerned at the paucity of my presence in the electronic media world. I had, by then, been on Facebook for several years but had fewer than 100 followers, most of whom I knew personally. That, Hachette’s marketing gurus declared, would not do—they’d like me to join every electronic media outgrowth, from Pinterest to Instagram. (Haven’t quite figured out Instagram…) And I needed a website. Peter and I set out at once to remedy the situation. After a long collaboration, which often strained our conjugal bonds, we launched the first version of our site. My blog found a home there too. Thanks so much to you, my readers—whether you have followed my blog from my first post or whether you came on board later—for your loyalty and support. Especially when I’m down, receiving a comment on my blog from one of you just makes my day.
Tree of Hope, Keep Firm, Frida Kahlo (1946)
My website has been up for three years now. Through the vicissitudes of broken links, human error, and advances in technology, it has been looking increasingly threadbare the last while. Peter and I finally got started on a make-over when we returned from San Antonio the last week in June. While we’re not quite done, Peter and I thought it was far enough along to start using it. Today is my first post in the simplified design. On your computer screen you won’t see a huge difference from before, but on your cell phone it should look much less messy.
The Broken Column, Frida Kahlo (1944). “Although her whole body is supported by the corset, Frida is conveying a message of spiritual triumph. She has tears on her face but she looks straight ahead and is challenging both herself and her audience to face her situation.”
In the three years since Memory’s Last Breath’s publication, my book, too, had a number of facelifts:
Above, in April 2018, the paperback came out; Peter holding the Japanese edition that recently came out. Below, Chinese edition.
Our move from Roberta Street to Wilmington Flats prompted other changes associated with my dementia-related projects: as we frantically divested ourselves of truckloads of material possessions, the bony, dressed-up figure of Doña Quixote did not make the cut. No room to swing a skeleton inside our new apartment. And the rules prohibit hanging items on the balcony. In the context of having to give away more possessions than we could take along, giving Doña Quixote the boot was not the heart-rending dilemma one might imagine. The Doña, after all, personifies everything that’s wrong with my brain. Who wouldn’t want to ditch that?
As I was about to pack her in the DI box, though, it felt that some ceremony was required. I carried her into the living room, already stripped of paintings and chachkas. Placing her in the seat of honor on the mantle, I said my goodbyes from my half of our LaZBoy couch.
Doña Quixote was not impressed. “Might as well get used to letting things go,” she snarkily remarked.
I didn’t argue. She’s right, of course. She, after all, was the entity that day after day robbed me of my capabilities. She leaves me no choice in letting go of my math skills, my executive function, my self-confidence. Heart hardened, I dumped her into the nearest box. “Out of sight, out of mind,” I muttered.
From her box-coffin, Doña Quixote quipped, “Out of mind? Takes one to know one.”
She was right. She was in my bones. Damn bones, damn bones, damn dry bones. She was my inner shadow, always with me. Her material form is still with me, I can see her swaying in the breeze out on our stoep. Her appearances in my mind leave me some regrets, for what I do not know.
Moses, Frida Kahlo (1945)
About a month ago, while we were shopping in the Mexican market in San Antonio, she appeared not just in my mind, but actually in material form: there she was, sitting in a mandorla of light in a glass case near the entrance: a dia de los Muertes figure that looked like the back-stoep Doña might after a reality show make-over. No DI rags for this avatar!
The best part about her was that she came in the the form of “a Frida,” that is, a day-of-the-dead image created with the likeness and attributes of artist Frida Kahlo: there she was, complete with monkeys and parrots.
Frida Kahlo was born in Coyoacan, Mexico, July 6th, 1907. At age six, she contracted polio; a long recovery isolated her from other children and permanently damaged one of her legs, causing her to walk with a limp after recovery. At the age of 18, she was seriously injured in a bus accident. She spent over a year in bed recovering from fractures to her spine, collarbone and ribs, a shattered pelvis, and shoulder and foot injuries. She endured more than 30 operations in her lifetime and during her convalescence she began to paint. Her paintings, mostly self-portraits and still life, were deliberately naïve, and filled with the colors and forms of Mexican folk art. At 22 Frida married the famous Mexican muralist Diego Rivera, 20 years her senior. Their stormy, passionate relationship survived infidelities, the pressures of careers, divorce, remarriage, Frida’s bi-sexual affairs, her poor health and her inability to have children.
Left, Henry Ford Hospital (1932). Right, The Dream (The Bed) (1940)
I have long felt a deep connection to the artist, which had strengthened after I discovered my own broken parts. I particularly related to her in regard to the way she used her art and clothing style to reconcile herself with her broken body. Every morning, as if in a ritual, Frida would dress herself up like like Cinderella going to the ball, arranging her costume and jewelry so as to hide the wounds on her body. Is that why I’m so interested in weird clothes?
Left, Appearances Can Be Deceiving, Frida Kahlo. Right, Installation: Appearances Can Be Deceiving, Frida Kahlo Museum, 2012.
“With a carefully curated wardrobe, Kahlo used her sense of style to define and conceal herself at will, fashioning an iconic status and establishing herself as a Mexican pop cultural figure. She used the fact that her clothes had to be customized to fit her body and accommodate her disability to her advantage. As Kahlo noted during her time in San Francisco, in a quote displayed on the museum’s wall, ‘the gringos really like me a lot and take notice of all the dresses and rebozos that I brought with me. Their jaws drop at the sight of my jade necklaces and all the painters want me to pose for them.'”
“The gringos really like me a lot…” A Frida Kahlo inspired design at the Jean Paul Gaultier Spring/Summer 1998 fashion week.
During her lifetime, Frida created some 200 paintings, drawings and sketches related to her experiences in life, her physical and emotional pain, and her turbulent relationship with Diego. Out of her 151 paintings, 55 are self-portraits. When asked why she painted so many self-portraits, Frida replied: “Because I am so often alone….because I am the subject I know best.” A Mexican critic noted that “her paintings are her biography.” (See a slide show about Frida’s life.)
Self-portrait with a Necklace, 1933.
In early July 1954, Frida made her last public appearance, when she participated in a Communist street demonstration. Soon after, on July 13th, 1954, at the age of 47, she died. Many mourners gathered at the crematorium to say goodbye. As the coffin was slid into the incinerator, her admirers’ lamentations and weeping filled the room. Legend has it that a sudden blast of heat from the open incinerator doors caused her body to bolt upright. Her hair, now on fire, blazed around her head like a halo. Her lips seemed to break into a bewitching grin just as the doors closed.
Funeral de Frida by Mark Bautch aka Satyarthi aka Marc DeBauch.
Such were my memories in the Mexican market as I stood at the display case lusting after Frida/ Doña Quixote. After tearing myself away to check out the rest of the market, I tried to remember the exact words of a quote of Frida’s I had copied down on a card and stuck to my computer at home. As I cycled back to the figure every now and then, my ear rang with three remembered words: “I heaven you.” I approached the owner of the booth and asked how much she cost. The price was enough to extinguish the candle I was burning for her. (It was not millionaire expensive, but it was extravagant for seniors-on-a-fixed-income.)
Memory, the Heart, Frida Kahlo (1937). This self-portrait expresses Frida’s heartbreak over one of Diego Riviera’s affairs. It shows her hair cropped, indicating the distance between her “real” (Mexican) self and the self wearing European-style clothes. Her Mexican clothes—her schoolgirl outfit and Tijuana costume—each has one arm only. Her unloved self has no arms. One foot is on the ground, the other hovers above the sea. The foot over the sea wears an apparatus that suggests her recent foot surgery.
At some stage during our visit to the market, Peter noticed my eternal return to the same display box. I pointed to the object of my avarice. He immediately recognized her as Doña Quixote. He asked if I wanted to get her, but I said no—she was expensive and we had no room for her in our new place.
Doña Frida, still homeless while I am still feng shui-ing for a perfect spot
Peter didn’t take no for an answer, though. He bought her. I was ecstatic. The third-generation booth owner wrapped her in enough bubble wrap to land her on the moon! We carried her with us on the plane. She made it home safely, but we are still looking for a good place to house her in our living room… Watch these pages for the outcome!
Rolling my eyes at Peter’s smart-ass remark that “she could live in our storage room,” I cradle her on my lap. But where is the Doña? See how she and I blend into one another?
After arriving home in one piece, Doña Quixote/Frida has not had much to say. The other day, though, when I moved her from the Victorian cupboard to the table to our bedroom and back again she muttered, “Poor thing, she’s crazy!”
To which DI Doña replied, “Told you so. Been there, done that.”
The Gerda part of me sighed, Be careful what you wish for. Oh, I am fortune’s fool!
Leaving the two sister-wives to trade their repartee, I went to my computer to look up the half-remembered quote from the Mexican market. Here it is:
“Can verbs be made up? I’ll tell you one. I heaven you, so my wings will open wide to love you boundlessly. I am not sick. I am broken. But I am happy to be alive as long as I can paint.”
Frida in the hospital painting her body-cast