I have not written a blog post for a long time because nothing new happens in my life and I’m (mostly) still aware enough not to retell old stories. The other day, however, something happened that made me want to write. Not that there was an exciting new event in my life (or even a noteworthy downward mental dip), but rather a spousal spat, albeit a silent one—”silent” because Peter did not know about it until I informed him the next day.
This is what happened: I was cleaning up after supper, which is one of the tasks I can still do and take responsibility for. Others are the laundry, keeping the apartment tidy, cleaning what’s necessary during the two weeks before our house cleaner comes again, cooking some meals as long as Peter cuts up the ingredients, making the bed, doing the dishes. Tasks I have regarded as drudge work during most of my life. Now I’m glad that I can still contribute in this way to make our household work. It boosts my sense of self—there’s something I can still do! On the evening under discussion, my body and my mind were both dragging by the time we had finished our evening meal. It had been one of those days in which a whole number of has-to-be-done tasks were bundled together. And each task took much longer than it should have because of my confusions and distractions. Nevertheless, I got through them. But I was tired. Even though I could just have said the word and Peter would have helped me clean up the kitchen or do the whole job in my place, my pride stopped me from asking. Instead, I muddled on in the name of “duty.” When Peter wandered into the kitchen for something while I was still busy, I asked him to help me afterward with something: a friend had texted me a web link and I wanted to watch it on my computer screen because the phone screen is too small for me to see properly. Despite the fact that he had shown me before, I did not know ho to send information from my phone to my desktop computer. “Would you please help me get the link David texted me to my computer?” I asked. “Sure,” he said. “l’ll show you how after you’re done. Just tell me when.”
A fly on the wall would have thought, “What a nice husband (it would be right). What a lovely couple they are (it would be wrong in relation to my dark heart..).” The fly voyeur was of course not able to see the inside of my miffed—no, angry—brain. As soon as Peter left the kitchen, I started weeping quiet tears into the soapy dish water. I’m eventually going to tell you the workings of my brain that led to that, but be warned that this story does not make me look rational, appreciative of my enormous privileges, or accepting of my dementia as I always claim to be. Instead it makes me look ego-centric, self-absorbed, dissatisfied, at war with myself and my husband, and caving in before a challenge. So why am I telling this story publicly?
While it mostly seems that Peter and I are having fun together, my head might be seething with angry thoughts.
First, I’m of course not the only one living with an illness who tells. A long history exists of both visual and literary artists, whether their illnesses mental- or physical, who create work that broadcasts far and wide their self-shame-provoking state and/or process of deterioration .
William Untermohlen, an American artist who lived in the UK, is an example of someone who publicly shows the unraveling of his brain as a result of Alzheimer’s. Is he acting knowingly or can’t he stop himself? Dementia is known for eventually breaking down patients’ social inhibitions, sometimes early on in the deterioration process. More pertinent to the issue of “showing and telling,” the part of his brain responsible for visualizing capabilities, so crucial for a painter, was also affected. Nevertheless, his desire to make art was not completely extinguished. From his 1995 diagnosis until his death in 2000, he created 5 self-portraits in which his work becomes more abstract, blurrier and vague, owing to the growing loss of his visualizing abilities. The artist’s widow, Patricia, explains in an essay why these images are so powerful. “[Here] we see with heart-breaking intensity William’s efforts to explain his altered self, his fears, and his sadness.”(“Artist with Alzheimer’s Drew Self-portraits for 5 Years until He Could Barely Remember His Own Face.”)
The issue of “Why disclose this shame-evoking state?” is frequently asked about a then new genre that emerged in the Young Adult (YA) literature market—”Sick Lit”—between the 1990s and the 2000s, that is, during the period when the internet was becoming a household convenience; with the awareness created by the relatively easy access to previously taboo or unknown topics such as AIDS, cancer, eating disorders, chronic illness, physical disabilities, and mental illnesses, these issues became more public, particularly among young teens who encountered them in their school and social lives. For YA writers, Sick Lit became a coming-of-age vehicle for portraying young people living with sicknesses such as cancer, self-harm, and emotional illnesses. The protagonist is typically dealing with a disease or has a close relationship with another character dealing with sickness. Sick Lit novels can have “good” outcomes in which the protagonist “wins” by heroically fighting the disease and reaching a balance between dealing with chemo- or psychotherapy and living a somewhat “normal” life. A protagonist also “wins” when she comes to accept the deprivations or disabilities of her disease, or even her death, and manages to find fulfillment and enjoyment in life and relationships in the remainder of her young life. Happy endings are usually romanticized and/or inspirational. An example of such a book is John Green’s The Fault in Our Stars, now also a movie. A character “loses” when they are unable to overcome their circumstances, leading to continuous unhappiness or suicide. An example is Jay Asher’s Thirteen Reasons Why, in which the depression of a teen who committed suicide is only understood after her death. (Also a movie).
Examples of Young Adult Sick Lit. I’ve read and seen the movies of Me and Earl and the Dying Girl and Wonder with my grandchildren. We all thought they brought amazing insights and were very uplifting despite the difficulty of the topics.
Critics of Sick Lit see the genre as “a disturbing phenomenon” and regard the plots as “mawkish at best, exploitative at worst,” citing a protagonist with stage four thyroid cancer wondering whether she has enough time to fall in love with her crush before she dies. From this point of view, Sick Lit sensationalizes teens’ suffering and might lead readers to themselves commit suicide or engage in self-harm. Critics who on the contrary believe that Sick Lit benefits readers in similar states of illness feel that it helps break the sense of aloneness of a child experiencing a traumatic state himself. “Isolation makes the situation worse and their problems more entrenched,” says Phil Earle, author of Saving Daisy, in which the titular girl self-harms. “Novels and stories on the subject offer a sense of communality and, most importantly, a sense of hope. How do I know this? Because young people going through such trauma have told me so.” (“‘Sick’ books for kids.”)
“Crazy woman” in adult fiction: Left, Bertha Mason, the madwoman in the attic in Jane Eyre. Center, adult sick lit book cover. Rightmost, the woman within in the wallpaper in the short story “The Yellow Wallpaper” by Charlotte Perkins Gilman
While novels or memoirs about or by sick adults do not have a particular named genre, examples of the form appear in literature ranging from Sophocles’ Ajax to Shakespeare’s Hamlet to Gustave Flaubert’s Madame Bovary to Sylvia Plath’s The Bell Jar to Mark Hadden’s The Curious Incident of the Dog in the Nighttime (the latter probably also qualifies as teen Sick Lit.) (The listed examples all relate to mental illness.) In adults, of course, the considerations about YA Sick Lit still hold—adults too, may manifest cases of copycat suicide or self-harm. Nevertheless, the adult literature is not condemned as a whole, since adults are supposedly mature individuals who should have the good judgment to act in their own best interest, which in our culture means overwhelmingly that living with pain and/or stress is better than killing oneself. Like teen readers who have serious illnesses or are dying, sick adults also find communality and inspiration through reading about the tribulations of others with similar difficulties.
Left, British artist John Kelting, who has Down Syndrome, portrays himself as a superhero. Right, British artist Bryan Charnley who had schizophrenia, was born on September 20th, 1949. He was diagnosed in 1969 when he was 19. From 1982 onwards, his work began to address his inner life, dreams and mental states particularly the nature of schizophrenia. He said about his self-portrait of 18th May, 1991 (above),“My mind seemed to be thought broadcasting very severely and it was beyond my will to do anything about it. I summed this up by painting my brain as an enormous mouth, acting independently of me. The trouble seemed to me rightly or wrongly, to stem from a broken heart on my left so I painted a great mass of gore there to express this. The foot that connects to this is pushing the mouth open for the thoughts to be broadcasted. I feel I am always divided against my self by myself. Again the nail in the mouth expresses my social ineptitude and an in ability to socialise which makes me a target.” In July 1991, he took his own life.
Adults who create word images of their own illnesses often offer explicit answers to the question of why they write about themselves during times they consider as the worst of their lives, such as a severe illness or journey toward death. Whether readers praise or condemn adult sickness memoirs, however, depends on the topic: whereas authors who write about end-stage kidney cancer or advanced heart disease are almost universally perceived as brave and informative, those who write about their Alzheimer’s or other dementias are often made to know that they are making strangers or friends uneasy. Lynne Castile Harper, author of On Vanishing (about dementia), is a minister who works with people in her community who have dementia. Although she has family who have the “dementia” gene, she does not herself have the disease (yet?). She writes about the negative reactions her topic evokes: “I soon become a container into which family, friends, colleagues, acquaintances, and strangers pour their anxieties about dementia, disappearance, death. This anxiety often manifests in reflexively negative comments, the most obvious and extreme of which is [statements such as] Oh, if I ever get an Alzheimer’s diagnosis, my next stop will be the gun shop; Take me on a long walk off a short pier; Give me a golf club and wheel me into a lightning storm—the negativity has felt consistent, uniform, almost orchestrated….In my more sensible moments, I am aware that what seems conspiratorial is only confirmation of why I wrote On Vanishing”: to help ease or eliminate the dread and fear associated with this stigmatized disease.
Louis William Wain (5 August 1860 – 4 July 1939) was an English artist best known for his drawings that featured anthropomorphized large-eyed cats and kittens. Later in life, he was confined to mental institutions. After his death, some psychiatrists found evidence of schizophrenia in his work. Rhey postulate that the progression of his disease is expressed by the increaslingly non-realistic and sometimes terrifying appearances of the cats over the years.
When telling people about my dementia, I have had experiences of negativity similar to those Lynne Castile Harper describes. They take on the form of denials that I could possibly have dementia or glib advice on how to cure my dementia, despite not knowing the type of disease I have. I try to respond with the information that, for many people diagnosed early, including me, dementia does not immediately spell the end of all capabilities or the ability to live well. We who know early about our disease can still potentially live several years of good life ahead; and I try to show that I am still (mostly) upbeat—and very, very grateful—for the abilities I still have and the joy I still get from my life because of an amazing support system of friends family, loyal readers. Like just about everyone who writes about dementia, I have experienced dismissive, negative responses and believe they are triggered by fear; and that my job is to help dispel that fear by example and with information.
British dementia advocacy group, Arts 4 Dementia, commissioned “D-IAGNOSIS!” from artist Jane Frere to help get people talking about their dementia concerns, to combat isolating stigma and trauma of diagnosis, preserve identity, sense of purpose, and social life in the community. The two heads represent a single figure; the left represents private fear of dementia, the right suggests the comfort provided by community through the hand gentling the fearful entity. The right side also illustrates how the dementer’s life is enriched by artistic stimulation that includes a wide range of cultural choices. The central eye directs waves of dementia awareness toward the suffering head as well as its supporting community.
I hasten to say that I am not in any way suggesting that you, my readers, friends, and acquaintances, have been negative or insensitive about my dementia tales. Indeed, your love and support is the reason that desperately want to write so that you know how much I value you. Your open-hearted reception of even off-putting information about a still taboo topic has buoyed and buttressed me through the past 10 years. You have shown me that writing even about my own worst behaviors and feelings does have some worth. I believe you when you say that knowing what a loved one with dementia is experiencing or being able to plan for your own future with dementia is helpful. And sharing my angst with you helps me process it.
Sweta Shah’s The Embrace. “By seeking embrace we move from solitude to multitude. We become plural.”
So finally let me tell you the unpalatable thoughts that led to the tearful dishwashing episode:
The morning after, I asked Peter to sit down so we could have a conversation. As is probably the case in other relationships, a request by either one to “talk” is often occasion for dread. I quickly reassured Peter that nothing I was going to tell him was his fault. The night before I was upset and angry, but it had nothing to do with him. It was rather the result of the scrambled emotions that often create havoc in my head: when (while I was in the middle of a low-status job) he told me he would “teach me” how use my cell phone to communicate with my desktop, his offer highlighted the fact “thinking” tasks were a thing of my past; that all I was still good for was mundane manual labor. I thought: “Not only does he love it that I fill my day with unpalatable chores but now he wants me to THINK as well.” I felt very badly done by!
Left, Overthinking, Vlad Bibik; Right, Over Thinking, Stacey Street
I went on to explain to Peter that in calm and reasonable mode I was aware that I have always encouraged him to help me keep doing the “thinking” jobs I was still capable of. In sane moments, it powered my ego that he still demonstrated an awareness and respect for the working parts of my brain. What I had not yet told him—and what I had expected him to read in my mind the night before—was that I was now very often so confused by many thinking tasks that I became agitated even at the mention of a thinking job—particularly one involving technological issues. I had somehow worked it out in my mind that he should just to DO thinking things for me instead of helping me do them myself. I the light of morning, I could acknowledge that he already does so many of these jobs with or for me: he is always with me on phone calls to the doctor and the bank to give my date of birth when I can’t remember it and explain what I need help with when I could not remember a word; he always arranges all our friend and family get-togethers to make sure the correct time is entered into our calendar; he always helps me figure out my financial dealings when I get into a panic; he even always orders the food for get-togethers that we want to host (I can no longer host, can’t even make coffee any more for visitors); and so on, ad infinitum. I then asked if he would from now on please help me with certain things by giving me a fish rather than teaching me to fish. I undertook that I would tell him when I was too overwhelmed to do the job myself and ask for his help. I would no longer expect him to read my mind. He, of course, hugged me, comforted me, said he’d LOVE to do all the thinking on my behalf if I needed it.
Although I could not have verbalized it at the time of the dishwashing incident, I later realized that what at had subconsciously upset me very much was the feeling that I actually wanted to give up. Not only during the dishwashing incident, but at many other times in my daily life. At such times I WANT to be a person who no longer has to think about real things. I want be free of all responsibility when it comes to thinking about living practically in the world. My philosophical thoughts or fantasies are enjoyable. But they never have to be applied to the world unless I want to do so. In other words, I want to stop expecting things from myself and just live from minute to minute. That would be so easy.
So far, I am able to resist letting go. But I know there will come a time when this decision will no longer be voluntary.
In the meantime, I am so grateful that I have someone in my life (a multitude of someones, in fact) who keeps helping with what I ask, even though my requests are continually taking larger and larger chunks of time. Every time I ask Peter for help, he responds with a huge smile and a tenderness that still melts my heart 53 years after we started going steady.
“I LOVE helping you,” he tells me every time. “I live to be with you as long as possible.”
I believe him. To mention only one small thing out of the dozens of things he did for me yesterday, he put a lot of time into help me with the illustrations of this post.