Gerda and I, aka, her dementia, have now become one
Featured image: Alice, illustration by Gianlucci Gambino, aka, Te Nia
In the immediate aftermath of my dementia diagnosis twelve years ago (2011), it made sense to separate my then-still-comparatively-rational self from the disease and look at it from the outside. That is when (almost subconsciously) I created Doña Quixote, my demented alter ego, from whom I could distance myself. We were not separate, but two closely-connected different entities: two sides of a coin: now you see heads, now you see tails.
A physical manifestation of Doña Quixote appeared at our house as a Halloween-style skeleton that Peter found in a thrift store and that I dressed up in her version of my fashion style. Thinking of my dementia as the Doña enabled me to pull away from her, rest a while as my old self—above, in our garden in Roberta Street where we lived at the time of my diagnosis, I turn my back on her.
Nowadays, though, I cannot rid myself of the Doña at any time. She has merged with my life to the extent that it seems futile to think of her as a separate entity: the coin spins so fast that the two separate sides are melded in a blur. My loss of memory, my confusion about where I am in time and space, my destruction of anything breakable that I lay my hands on, and my non-stop mishaps of losing my keys/handbag/wallet/mind have undone my identity to the point where a stable, recognizable former self seems like a long-lost luxury. Doña Quixote has unmade the self I used to be and filled in the gaps with herself.
One of a series of recent works by Enrico Ferrarini—an Italian sculptor who currently lives in Carrara—shows the transformations that occur in one human being as a result of “movement, expression and perception” followed over time. The work “evolved out of research in neuroscience with a deep reflection on mirror neurons.” Mirror neurons are brain cells that fire both when a primate such as a monkey or a human being performs a movement and when it observes the same movement by another monkey or a human. In my case, Doña Quixote sees, Gerda does.
Despite my sense that I have merged with my disease, people still look at me and apparently see a much less depleted Gerda than I really am. “Nobody would guess you have dementia” is a familiar remark that I hear all the time from people who spend only a short time in my company. My close friends and family, though, see the changes in me; they experience that I frequently lose words or whole concepts or huge chunks of time, that socializing is getting harder, so that sometimes I have to stay in my home cave to rest my brain, exhausted by just performing the necessities of daily life with Peter’s help. Peter, in particular, knows that Doña Quixote am me. He does not love me any less. In fact, my dependence on him seems to make him love me more and then I love him more. My constant requests for help also exhausts him and there are days when our mutual exhaustions are amplified into discord. It never lasts long, but every time it leaves a ding in each of us.
Enrico Ferrarini, transformation series.
Before I proceed to some unpalatable facts about my identity/sense of self, let me reassure you, my readers, that I am not whining or wailing or gnashing my teeth writing while writing this post; on the contrary, I feel sort of morally superior (insert full-of-self laugh) because I am willing to confront the grim facts of my current and future life with dementia. But before the bad and the ugly, here is the good: I am joyful and grateful that I am still able to partly hold on to an indispensable aspect of my former self: the desire to write my blog and the ability to still do so at times. Writing is arduous and a blog entry takes me forever, interspersed as it is with more days I cannot write than days that I can. On such days, my words are as lost as they often are in my speech. On can-write days, I am frequently still word-less but by using a Thesaurus to look up the wrong words that come to mind when I’m reaching for the right one, I mostly can find a workable word, even if I know it is still not the perfect one that I know exists. Many days my trouble with words are the opposite: I say anything that comes into my head, often mean and critical things to Peter that I deeply regret as soon as I see the shocked/hurt expression on his face; I talk out my stream-of-consciousness without sorting and evaluating its contents. For getting over that fact that I nevertheless must live with this deplorable characteristic, my writing helps: in the sorry notes I write Peter or in processing (distancing myself from?)this awful tendency in a post, like now. Because I must live with it. Samuel Johnson, that distinguished man of letters and gatherer of words in the Johnson’s Dictionary, said that art enables people “better to enjoy life or better to endure it.” By practicing my version of the art of writing and through my hunt for paintings and sculptures to illustrate my posts I manage to endure—and enjoy.
Enrico Ferrarini, transformation series. This looks like I feel when I am trying to get the words out of my head. And also when I want to rip my mouth off my face for saying hurtful things.
I ask myself every day if Doña Gerda is still my Self. People I know who have cared for their loved ones with dementia as well as books or blogs by caregivers insist on the persistence of a “real you” in persons with dementia up to their last days. As in…
By “getting you to sing, making you laugh, talking to you, holding you, stroking you and trying, however incompetently, to entertain you, we are really cherishing the real you” (Sally Magnusson, caregiver and author of Where Memories Go: Why Dementia Changes Everything).
But who is the Self that is “the real you?” Can there be a self when the inhabitant of the self no longer knows that it has/is a self? Of what does a self exist when its words and meanings have been unmade?
Death Visceration, Taiji Taomote. Working mainly in ceramics, she creates sculptures inspired by skeletal motifs. In medical lingo, pelvic visceration (also evisceration) is a radical surgical treatment that removes all organs from a person’s pelvic cavity to treat certain cancers; in ophthalmology, it is removing the internal material from the eye. (Ouch, I just had the cataract in my left eye removed… right eye coming up before Christmas.) Despite its gruesome connotations, the title of Taomote’s sculpture promises a seemingly good thing: the removal of death (in the shape of a skull) from a woman’s head. But what is being removed from the woman’s head when a skull, presumably on in which the brain is already gone, is taken out? What would she be then: a woman without a brain? Could a living head without a brain or a skull still be a Self?
The insistence of some caregivers that “a real self” is operative inside someone whose dementia is far advanced is an extension of a movement known as “person first language,” which was started by people with disabilities during the early 1970s as a mode of self-empowerment. To them putting someone’s disability/impairment first, as in saying “a deaf child,” suggests to the child that he should be ashamed of his diagnosis or distance themselves from it. The child perceives it as meaning “My deafness is NOT a part of who I am, it’s an evil brain slug attached to my head that my parents/doctors want to remove at all costs.”
By contrast, a movement known as “identity first language” was started in the late 1990s by people with autism who felt damaged by their parents’/teachers’/therapists’ use of “person first language.” Rather than saying, for example, “I have autism, ” they prefer announcing themselves was “I am autistic.” To them “I am autistic” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.” Just substitute “dementia” for “autism” in the quote and you’ll know exactly how I feel. Therefore, when I say”Doña Quixote am me,” I, too, mean that my dis-ability is an important part of my identity. Love me, love the Doña.
Image source: News@Northeastern
Many disabled communities are now advocating for a shift to identity-first language, an approach that acknowledges a person’s disability as an integral part of their identity. An early example is the word “crip” (for cripple) which has been reclaimed by people who experience physical and mobility impairments. In addition, people who experience mental, learning, and sensory impairments are increasingly using crip as well to refer to themselves. In many areas of disability, though, some people with disabilities still prefer “person-first language,” since that is still the language taught, used, and sanctified at nursing -, medical-, occupational therapy- .and other health-related schools, as well as mandated by many scholarly journals, including academic disability studies. It remains to be seen whether disability advocates come to a consensus on which language they prefer. In the meantime, the best Ianguage to use is the one preferred by the person being addressed. As for me, I prefer putting my dementia right up there with the left-over characteristics of my former Self. Accordingly, I go for identity first. “I dement, I am a dementer,” words not allowed in person-first language.
After thinking and reading about the changing language preferences in relation to disabilities, I have come to the conclusion that the language you choose or the words for different groups that each era prefers does not matter as much as each camp believes. The impulse behind both approaches is to advocate for respect and self-determination for themselves and others who are different in various ways. Difference is what we hope our society will come to not only accept, but value. The exact way in which we honor, accept, and love people different from us does not matter in the end, but rather whether our honor-bestowing intention, acceptance, and love is clear to the people it describes. To illustrate this, here are two beautiful true stories from the Renaissance era, a time when any kind of thoughtful language wasn’t even being discussed in relation to disabilities; by contrast, language that’s completely unacceptable now and that I only mention by way of illustration, was being used at the time of these stories: for example, “idiot, imbecile, moron, and retarded for the developmentally or intellectually disabled”; “deaf and dumb for deaf and non-speaking or non-verbal people”; “crazy, nut, looney, insane for the mentally ill or mentally disabled; and “cripple, gimp for the physically disabled or just disabled.” And yet, (at least) two respectful, honor-bestowing, and loving examples have been discovered in relation to people with Down Syndrome, respectively 600 and 400 years ago. But first, a contemporary example of honoring and valuing someone with Down Syndrome.
In 2017, 21-year-old Mélanie Ségard (who has Down’s syndrome) had the opportunity to make a dream come true: she presented the weather forecast on the national television channel France 2 after the eight o’clock news.
Now back to past history. In an web article by Charles Josefson on the depiction of disabilities in art, the author notes that even though Down Syndrome only appeared in medical literature in 1866 when the English physician Dr John Langston Down first described it, two classic Old Masters seem to reference the syndrome 5 and 4 centuries earlier.
First, Dr. Brian Stratford, a specialist in developmental disabilities at the University of Nottingham, has suggested that the Italian Renaissance painter Andrea Mantegna used a little boy with Down Syndrome as the model for his Christ child. Mantegna’s patron had a boy with an unidentified “sickness.” One of Mantegna’s fourteen children also had the same unidentified condition. Dr Stratford posits that the pictorial evidence suggests they might both have had Down Syndrome. Did Mantegna and Gonzaga honor their own “sick” children by agreeing/deciding that they be modeled in the image of Christ?
Andrea Mantegna, Virgin and Child (c. 1460), tempera on canvas.
Second, according to an article in the American Journal of Genetics by Andrew Levitas and Cheryl Reid, a sixteenth-century Flemish Nativity painting, The Adoration of the Christ Child, may also depict Down Syndrome. The researchers focussed on the angel to Mary’s left, noting the facial features resembling Down Syndrome and the fingers which seem shorter. They speculate that she was modeled upon a beloved daughter with the syndrome in a wealthy Flemish family who patronised the artist. In addition, the authors felt the shepherd in the center back of the painting (half obscuring the middle pillar in the background) also has facial features suggestive of Down Syndrome. Below, I show the whole painting at the top; in the middle, a detail of the angel perceived to have Down Syndrome; and, lastly, a detail of the shepherd with similar features.
The Adoration of the Christ Child by a follower of Jan Joest of Kalkar, Netherlands. (ca. 1515). Oil on wood, Metropolitan Museum of Art.
The circled angel is thought to portray a child with Down Syndrome. To see a clearer reproduction, go to Mercatornet.com
The shepherd on the left is thought to portray a man with Down Syndrome. To see a clearer reproduction, go to the whole painting at the Met
December 9, 2022 @ 9:49 pm
Thank you greatly for sharing your experience of living with dementia…
December 11, 2022 @ 6:20 pm
Thanks so much for being in touch, Kathleen, and for the note that you find something worthwhile in my writing about myself and my dementia.
December 9, 2022 @ 10:20 pm
So perfectly timed to my moment in time. Thank you, Gerda, for always inspiring and enlightening–and for somehow knowing what I need to see and read.
December 11, 2022 @ 6:23 pm
My dearest Shauna,I’m so glad that you found something in my piece that resonates with you in the space-time cone currently around you. It was very lovely to see you and lean on you (an excuse for touching you) at the art event some time ago. Let me know if you’re ever up for coffee. I still get out for that once in a while. Wishing you a good time of reflection and renewal in our time of winter solstice.