Dementia Field Notes resumed: entry wounds

Featured image: Maria Lassnig, Dame mit Hirn (Woman with Brain), 1990.

When I retired from my job as the associate director of and a teacher in Gender Studies nine months after being diagnosed with young-onset dementia (2010), my colleagues gave me a beautiful leather-bound journal, the gilt-splotched kind with pen-friendly, unlined paper. For the first months of my retirement, I was too exhausted to face my computer at all. While resting and unwinding, the only form of writing I could manage was to handwrite—in my classy new journal!—notes about my memory mishaps and the impact that they had on my life. I did not write every day. Only when things were so off-kilter that they overtly spelled out the falling-apart of my brain. I dubbed my observations “Dementia Field Notes” (DFN). When I was starting to feel more together again, some of these Notes made it into the blogpost I had started.

Below, for example, is a Dementia Field Note from July 10, 2012, about a year into my retirement:

“After a follow-up appointment with the doctor who’d recently taken 18″ out of my sigmoid colon, I returned to my car to pick up the old people in my neighborhood whom I took grocery shopping once a week. I had parked the car between a wall and a giant SUV. When I got in, someone was behind me—probably after my spot—but too close. I motioned her back, and she retreated far enough for most people but not for me. I felt very stressed when I reversed out. Not being a good judge of distance these days, I did not go out far enough—so that when I made the turn, I went bang into the SUV next to my spot. I got such a fright that I reversed and hit the concrete wall on the other side. Fortunately those SUV’s are like tanks and it had very little damage, but my car was a mess. At first I was so befuddled, however, that I thought the pieces of front lights scattered on the ground came from the SUV, though in retrospect it became clear that it did not have that kind of lights at all. The SUV owner was probably somewhere in the physicians’ office block, so I found a piece of paper, went inside to borrow a pen, and wrote him/her a note with my confession and contact info. I then called Peter and told him of my one-driver accident bumping into two stationary objects, upon which he wanted to catch a bus out there to come and help me—what a sweetheart! I told him the car was drivable and I would drive back, which I did in extreme terror. That was the last time I will have driven in my life. When I got back home, I told Peter that I was no longer going to drive. I told the old neighbors I would not be taking them that day or any other day in future. The next week I voluntarily surrendered my driver’s license.”

DFN continued, “On Sunday morning I decided to make some kind of statement to myself, and what I chose was to go shopping. By bus. At Fashion Place Mall. A bus drive that takes an hour there and an hour back on Saturdays because the buses are not that frequent. Well, it turns out that I could not have discovered a better therapy. Nothing like being the only white person on the bus who is not homeless or otherwise destitute, and being one of just a very few white people anyway, with the usual complement of African Americans, Native Americans, and Latinos/as for company. After getting back home, I felt able to lift my head in places other than the bus.”

Maria Lassnig, Die Lebensqualität  (The Quality of Life), 2001. On the rocky bed of a choppy, a blue-green ocean lies a sunken steamer. Above it, a naked woman treads water. She startles when a light green fish the size of her thigh bites her calf. Despite the toothy sneak attack, she manages to keep her head above water and to save her glass of red wine.

Dementia Field Note, first week of June 2022.

“Shen picked me up for a get-together with Kirstin. After a home-made dinner at Kirstin’s, Shen transported me home. It was after 9 pm in the evening. As always, she parked across the road at Legacy House, a senior center with levels of care up to a dementia floor. It’s front is always well lit so that I can make sure I take all my stuff out of the car before I use the flashing crosswalk to get to our apartment on the other side of the road. As always, Shen waited in that spot until I had found my key in, pressed the button of make the lights flash, crossed the street (where it was darker), reached my door, opened it, and waved her on. With my key already in my hand, I got in without a lot of scrambling. At home, Peter came to the kitchen to make me coffee as soon as he heard I was home. We then sat down snugly, watching an episode of one of the series we watch together every evening until I was time for the local news at 10 pm. Once the weather report was over, it would be time for me to go to bed.”

DFN continued, “While we were still watching the news headlines, there was a knock at our door. Surprised at having a visitor that late, I went to the door. There stood a fellow resident I had seen and spoken to in the elevator before. Her name was Jenna and she worked at the neonatal unit at the Children’s Hospital. She held up my handbag. “Someone found it outside,” she said. “We checked inside and when I saw your identity card, I recognized you and of course I know where you live.” I was stunned, overcome with gratitude. When both Peter and I had profusely thanked her and she had left, I finally had time to address my utter shock that I had lost my bag—completely without noticing! Peter was equally grateful and dismayed. We checked everything in my bag—everything was there. Perfect. Thanks to the universe for kind, smart, and helpful people. While looking closely into my bag, I found that the small spray bottle that I carry with me for cleaning my glasses was squashed and permanently deformed. Fortunately it had not broken and spilled. And then I saw looked closer at my phone: the screen was cracked at the one corner. Both of these signs of damage were too severe to have resulted from someone stepping on my bag, even the tall and big body-builder on our floor with whom I like to chat. Together with marks on the outside of my bag, Peter and I deduced that a car must have driven over the bag, just catching it by one of the bottom corners. Which meant that I must have lost my bag while using the crosswalk. Totally without feeling it slip off my shoulder or seeing it drop.” 

Maria Lassnig, Untitled, ca. 1995–2009

This incident had an impact of my self-esteem that was of a similar order of magnitude than my parking lot accident had been. It upended my self-confidence and self-image. Like that time, I went into period of anger at myself, despair at the new low my ability to live in the world I had reached, and anxiety about ever going out anywhere without Peter. My brain on a loop: cringing, shrinking, disgust, anger, hopelessness.

Maria Lassnig, The Griever, 2003

Re-enactment: At the door between our parking spot and the elevator lobby, one is supposed to use a fob card like the one in my hand to touch the sensor indicated by the red light in the black pad on the door frame. Once the light turns green, you can press the large, disability access push pad to automatically open the door.

DFN continued,”While I usually manage to slide my card by the sensor and watch it go green and right away push the door-opening pad, this time I only swiped the sensor. Then I just stood like Eeyore, not seeing the light turn red again or hearing Peter behind me saying, “Are we going in?” After he’d repeated his question, I noticed. Sheepishly, I tried again. This time I forgot about the red light and swiped my fob card across the disability access pad. Nothing happened. By then Peter figured out I was out of it and told me gently what to do. My remarkable husband did not grab the fob from me or take out his own to open the door. He just  slowly repeated the steps so I could do them one at a time. This time I was together enough to realize my failure. In the elevator I teared up.”

Maria Lassnig, Untitled, 2005. A woman lies horizontally across to crutches that have no visible support to keep them upright.

The impact this incident had on me had a dimension the other two did not have: I outwardly appeared to Peter like someone with dementia. Remembering my mother’s vacant look when her dementia was quite far advanced, I realized that—though Peter was the only witness—other people seeing me standing there would have taken me as someone with dementia. I have seen other people in our neighborhood frozen at a cashier’s counter without a clue where to find their credit card or how to put it into the reader and recognized them as a fellow dementia, just a few steps lower down the slope than me. Over all the years I’ve lived with my diagnosis, people frequently had a hard time believing that I spoke the truth. Then my crazy behavior happened mostly in private moments at home with Peter or, now and then, with people with whom I’m very close. Now, I knew that I might at any time slip into odd behaviors without even knowing I was doing so. Have probably already done so, but just had not realized it until now. 

Afterwards, for over a week, my brain went through a by-now-familiar cycle: shrinking, cringing, angry, defeated, self-doubt, hopelessness, too scared to leave the house. I was exhausted all the time. I had long naps and still slept my usual nine hours at night. I only kept my most important calendar events, most of which had to do with friends: my Tuesday zoom chat  and coffee with an out-of-town friend for coffee. Even these token acts would drain all my energy for the day. Back to sleeping.

Maria Lassnig, Krankenhaus (Hospital), 2005. Lassnig painted this when she was in her eighties. “The composition is split horizontally. In the top half, three heads resting on pillows are fearful and pained – one is reminiscent of the face in Edvard Munch’s famous The Scream (1893) – and suggest the patients’ misery, lying helpless and anxious beneath the uniform, institutional lights. The bottom half, like an X-ray of what lies under the bedclothes, reveals two grotesque, misshapen bodies with absent limbs and gaping wounds. The work is a powerful depiction of the wretched reality of ill health and incapacity in old age” (Artspace).

As I end this post, I feel obliged to leave you, my dear readers, on a positive note. This time I really don’t have one. All I can say is that the sleep helped and that I am now again leaving the house and going about my small life at home and in our neighborhood. Of course my return to a point where I can go on is enormously as a result of having Peter, who loves me and supports me and was company even when I was mostly sleeping. However, I do not deserve and cannot prescribe the good fortune I’ve had in my marriage. What I can pass on, however, is the doctor’s advice in the title of the last Maria Lassnig painting that I will show.