…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.
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.
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.
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