Winter solstice, “the night when whatever direction you go, you’ll be walking toward the dawn”

Title quote from “Blessing for the Longest Night,” Jan Richardson. Featured image by Peter, “2019 Saunders Family.”

I write this in the season of

…the winter solstice, the still point
of the sun, its cusp and midnight,
the year’s threshold
and unlocking, where the past
lets go of and becomes the future (Margaret Atwood, “Shape Changers in Winter“). 

Photo credit: Chris Kotsiopoulus. Winter solstice at Lulworth Cove, near the village of West Lulworth, on the Jurassic Coast in Dorset, southern England.

Since my last post, my Sturm und Drang tell-all about the blow my undiagnosis—i.e., the shocking news that microvascular disease could not account for my many cognitive difficulties—had visited upon my soul, I have mercifully come to a still point again. The main reason is the love and support Peter and my family and friends have bestowed on me since my self fell apart. Thanks also to all of you, my online friends, for your messages of support and wishes for me and my family to return to better times. We have!

The Salt Lake City Saunderses celebrate Christmas at Newton and Cheryl’s house. See the two of them at the head  of the table. All of our family feasts for the past decade are “organized potlucks”: the person who volunteers to host—since Peter and I moved to our small flat, hosting mostly switches between MAD (Marissa, Adam, Dante) and the CKANs (Cheryl, Kanye, Aliya, Newton)—sends out an e-mail with the three food groups, protein, vegetables/salad, dessert, and each of our 3 families signs up for one item. Clockwise from Cheryl and Newton, Gerda and Peter, Kanye, Aliya, Dante, Adam, Marissa, and Adam’s mom Sandi. Sandi ignores our 3 food groups and brings fresh home-made bread! IN the top right corner, see Aliya’s portrait of the CKANs.

My good humor was to a large extent restored by the “uplifting” news (in Doña Quixote’s topsy turvy world) from the University of Utah’s Neurological Disorders and Imaging Clinic, where my re-diagnosis is still in progress, that I definitely have at least one dementia, maybe more. Compare my and Peter’s positive take on this kind of traditionally bad news to Ady Barkan’s response when diagnosed with ASL: “Thank God there is something wrong!” (Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance.)

Self with Dragon, Maria Lassnig, 2005. Since 1948, Lassnig has been creating what she calls “Körperbilder” or “body awareness” paintings, which illustrate sensations experienced by her body that define her relationship with the outside world. To me, Self with Dragon speaks to both Ady Barkan‘s and my gratitude for medically observable signs of a disease: at last the “dragon” that sits on top of you with its enormous weight is validated. The unwieldy burden of your daily experience that “THERE IS SOMETHING SERIOUSLY WRONG WITH ME” is at last backed up by scientific methods, in my case, by a new batch of neuropsychological test results.

As I mentioned in my previous post, my confidence after my undiagnosis dipped particularly low because I was gearing up to do a keynote at the 30th Annual Gerontology Update Conference at University of Missouri’s Sinclair School of Nursing in Columbia the first week of this month (Gero19 Brochure). The conference-goers would be academics as well as nurses and other daily caregivers of people with dementia. Because of my unacknowledged “dragon” at the time, I felt that I had no credibility to present at the conference. Accordingly, I e-mailed the person who had invited me, Assistant Dean of Nursing Outreach & Teaching Professor Shirley Farrah, about my MRI results and my resultant undiagnosis, but she assured me that my book and recommendations from other nursing school deans had convinced her that I should still speak. She was aware that incorrect diagnoses often happened in the world of dementia and asked me to address the the effect of my misdiagnosis on my Self as part of my presentation, which I said I would do. Fortunately I soon after received the test results that would enable me to report on my diagnostic process with less gloom!

The lovely Shirley Farrah: on the outside, she has a fabulous, creative dress style and a most welcoming smile and loving demeanor; on the inside, she is the person you want to be in charge of your care whether you are young or old, sick or well, known to her or unknown; she herself has overcome debilitating illness during her time in nursing school and she thought she would never walk again or be able to complete her degree. With her Christian faith and enormous inner strength she has not only regained the major part of her earlier health, but also exceeded even her own dreams by eventually completing her PhD in nursing, serving a long career with distinction. She continues to do so now that she is in her seventies through her job in community outreach. To her it is not a job but a calling. Wherever she works, she is revered and beloved. I wish she were my neighbor. I’m glad she is my friend.

Even though I had received new data, the problem—as Peter put it—was that “the results of Gerda’s neurological evaluation, which consisted of a battery of 38 tests over 4 hours, is conveyed in a verbal report, which discusses the various test categories in a story-like fashion. For example:

“Language functioning

• A test of vocabulary was a relative strength for Dr Saunders in the Superior/Very Superior range.
• A test of verbal abstract reasoning was High Average.
• Verbal fluency was Borderline impaired.

“Visuospatial- and Construction functioning

• Her ability to copy a complex figure was Normal
• A test of simple perception was Borderline impaired.
• Visual puzzles were Low average.”

SAY WHAT?  As Peter says, “this kind of verbal data presentation makes it difficult to comprehend the results and one tends to remember only anecdotal parts of the report.”

Before discussing my own comprehension-difficulties regarding the report with Peter, I had a go at making the data more understandable: foolishly counting on my now-50-years-ago bachelor’s in math, I tried to plot the 7 values assigned to my various performance results in the report—ranging from “impaired” to “very superior”—on a bar graph. My failure mumbles for itself:

Gerda’s pathetic attempt to create a visual presentation of her neuropsychological test results.

Clearly I needed help. Peter suggested roping in our daughter Marissa, a data analyst. She created an amazing visual representation of the incoherent words and numbers: a set of pie graphs that led both Peter and me to a completely new understanding of my daily difficulties. They shone a light on the discrepancy between how he and I, as well as others who spend a lot of time with me, perceive me—someone with complex disabilities—vs how “the world out there” perceives me—someone who appears rational, coherent, and verbally competent. (I am, of course, both.)

The Secret Double (Le Double secret), René Magritte, 1927. Here Magritte uses the surrealist method of “destruction” by removing a part of the actual image and placing the pulled out part in another area: that is, the woman’s face is removed from the head to reveal a vocal chord ringing with what I think of as “the bells of madness,” as in the title phrase of the Beach Boys’ Brian Wilson‘s song. Having spent much of the mid-60s to the mid-90s lost in a world of drugs and mental illness, Wilson knows something about madness: even though he has been drug-free for years now, his memory is still sketchy and his behavior often eccentric. At one point he refused to venture outside his home and had an adult-size sandbox as well as a wooden phone booth built in his living room. Apparently, the sandbox came in handy as a place to unwind whether he was home alone or with people he knew but who temporarily became too much. The phone booth was a similar refuge, but one used mostly when he needed to compose himself at the arrival of an unfamiliar visitor.

As we prepared for the Missouri conference, I asked Peter to do the part of the talk that explains Marissa’s graphs. His description was met with “Oh, now I get it” and “I want one of these graphs for each of my patients” comments from the audience. For this post, I have asked him to explain the graphs to you in a video. I ask that, even if you don’t think of yourself as a math aficcionado, you give the video your best attention because these images are the artifacts that have helped me most to understand my dementia even after grappling with it since 2011. Click the arrow on Peter’s picture to see the video. Go to full screen to get the best view. During the first seconds while the video is still loading, the image of the graph is a bit blurry. Just give it time, it becomes clear almost right away.

The minute I understood Marissa’s graphs for the first time, a deep understanding came to me, (in the rhythms of “the light that came to lucille clifton”),

…in a shift of knowing
when even her fondest sureties
faded away. it was the season
she understood that she had not understood
and was not mistress even
of her own off eye…
a voice from the nondead past started talking,
she closed her ears and it spelled out in her hand
“you might as well answer the door, my child,
the truth is furiously knocking.”

The truth, when I let it in, was that I had to arrange my life to accommodate Doña Quixote’s quirks much more than I ever had before. The graphs show why: from minute to minute—depending on which part of my brain’s skill reservoir my intentions are prompting me to draw from—my abilities veer from the superior 90-something percentile to the impaired 3-something percentile, something I had not consciously known with such clarity before. The truth is that I can only make my existence liveable if I obey the Doña’s commandments: Make your life smaller and slower. Accept that you can do less. Plan on only a few hours of energy per day. Schedule no more than one thing a day. Nap whenever your body tells you to. Spend less time with other people: yes, even good friends. The ugliness of her commands: be selfish.

This is my truth, #1: When I’m in the realm of words, I am the Winged Victory of Samothrace.

However, note that Winged Victory has lost her head. Actually, headlessness is only one of her deficits in my metaphor: when archaeologist Charles Champoiseau unearthed her remains in 1863, he recovered her left wing only. The right wing is a plaster cast added by the Louvre. Related to my facility with words, this state of affairs means that—under ideal circumstances—I can expect my writing to last for only a few hours at a time. That is, as long as I stick to my desk without taking my eyes off the screen to avoid distractions. As far as speaking goes—when I interact verbally with the world, my attempt to focus amid continual environmental distractions use up my available mental energy rather more quickly than when I write. With a friend—two at most and only if we take turns talking—I can count on no more an hour or two of good conversation. Except for my own Saunders- and made-in-America families, I can no longer go to go to parties or celebrations with more than three or four people. If I keep to these ordinances, I can still maintain my love affair “...with words,/ they are both daisies and bruises,/ doves falling out of the ceiling,/ six holy oranges sitting in my lap,/ trees, the legs of summer,/ and the sun, its passionate face (“Words Poem,” Anne Sexton).

This is my truth, #2: when I am in the real word of having to pay attention, remember practical stuff, get things done, and cross a room, I am locked in Todd Slaughter‘s version of musician Brian Wilson’s wooden phone booth, a sculpture installation titled Lookout: padded apartment.

This is my truth, #3: If I don’t heed Doña Quixote’s fiat, I may think I’m in a good place for a while, but in fact my comfort zone is as false as Todd Slaughter’s eponymous installation: in Comfort Zone, a cast salt sofa and armchair slowly dissolve in their steam-filled chamber.

This is my truth, #4: If I follow Doña Quixote’s rules of making my life small—as Peter has fortunately helped me start doing at the beginning of what usually would have been a hectic Christmas season—my life works and I love every moment of it. The smallness I aspire to is not the heroic form of, say, Hellen Keller’s humble confession that “I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble”; nor the affirmative pursuit of small things Mother Teresa lauds when she says “the Lord likes small things best, especially those done with love”; nor the grandiose endgame that futurist Alvin Toffler envisions in his statement “you’ve got to think about big things while you’re doing small things, so that all the small things go in the right direction.” The smallness that delineates my future is the the kind exemplified by the expression “small things amuse small minds.”

Although the title of Max Hojer Jacobsen sculpture, Life`s biggest challenges are to keep the right balance, is the antithesis of my selfish embrace of small things, the sensibility of the image strikes me as just right: an oyster has become my world!

Going small is a big, positive thing for me. Smallness is easy to embrace when it responds to necessity—to have a self at all, I have to accept that it will be a small one. I love the unintended positivity embedded in the phrase “small things amuse small minds”: even a tiny self is apparently still entitled to amusement! Given that we-the-small-minded are prone to belittle others so we can feel bigger, let me lose no time in doing so, particularly now that I have patched up my frenemyship with Doña Quixote: who could serve better as a foil for making me feel bigger than her? Besides, if  pick on her I at least keep my smallness in the family. So do guffaw with me at the ridiculous sight of the Doña’s eponymous counterpart, Don Quixote—got up in drag—to become Donquixote Doflamingo (from the manga and anime One Piece). Doesn’t the juxtaposition below of {Donquixote Doflamingo impersonating my Doña Quixote} and {the photo of me impersonating Donquixote Doflamingo impersonating MY Doña Quixote} make a perfect metaphor for my undiagnosis-triggered crisis of selves?

As for you, my beloved friends: Peter and I wish you all a blessed dawn as you enter this new cycle of winter solstice/spring equinox/summer solstice/fall equinox, no matter the length of each day. Do keep on living big, loving big!