(In)dependence Day, or, Writing Under the Influence of My Dementia

Featured image: Atomic and Uranic Melancholic Idyll, Salvador Dalí (1945).

Last week Monday, July 2, 2018, a giant saucer-shaped UFO, large enough to eclipse the waning gibbous moon over the Salt Lake Valley, entered Earth orbit and deployed a saucer-shaped “destroyer” module that settled over Wilmington Flats, obscuring even the little paradise of Hidden Hollow. As I watched from the living room couch, the door to the alien fighter popped open, a ladder slid out toward our balcony, and down came a bizarre-looking creature with tentacles.

As soon as it had armed its way down the treads and stepped onto our balcony between our electric barbecue and my potted jasmine vine, it extended a tentacle in what I took to be a greeting. I proffered my hand, but rather than taking it, the creature went straight for my neck. My hands flew up to loosen its grip, but I could feel my throat tightening and starting to close up. I had no voice. The world was darkening. I crumpled to the floor.

When I came to consciousness, Doña Quixote had materialized beside me. She had apparently pried the alien off me, pushed it to the railing where it teetered on two tentacles, then delivered a swift right cross, and—while spitting out a “Welcome to Earth!”— knocked the creature out. She tied it up with my belt. Without even one more glance in my direction, she sat down on Peter’s scotch-on-the-rocks chair and started to prime a victory cigar.

Vincent van Gogh, Skeleton with Cigarette.

The Doña’s triumph— and my reprieve—were short-lived. She had barely primed and lit her stogie when the creature regained consciousness. Because—as I would later learn—it had no vocal cords and communicated telepathically with other members of its genetic make-up, it usurped the voice of the neurologist who told me 7 years ago that I “was already dementing,” and demanded in a raspy voice, “Release me!”

An ugly grin flattened the Doña ‘s lips against her cigar. She looked menacingly past the growing ash tube at the tip of her stogie. Knowing from experience that the Doña was about to resort to violence again, I asked the alien if it would like a cup of tea so we could talk peace.

“No peace,” it said.

“What, then, do you want me to do?” I asked.

“Die,” it replied.

This time when the alien came for me, the Doña did not come to my defense. Instead, she morphed her bony limbs into the alien’s eight-armed exoskeleton and, using the creature’s telepathic powers to invade my mind, poisoned me with their conjoined madness.

* * *

My depression—and that of many others—is associated with “anhedonia,’ or the loss of pleasure and interest. A state of anhedonia is similar to being drunk in the following way: what your anhedonic mouth spouts are all those thoughts your sober mouth doesn’t have the guts to. So, inhibitions suppressed, I will echo what drunken Alcibiades—dressed as an 18th century French queen of the imagination—says to Socrates in the Symposium, “I shall speak the truth; now, will you permit me?…I will not lie if I can help it. Still, you are not to be surprised if I tell my reminiscences haphazardly; it is anything but easy for someone in my condition to give a fluent and regular enumeration of her own oddities” (214e-215a).

Alcibiades Being Taught by Socrates (or vice versa?), François-Andre Vincent,1776. What a nice coincidence that the painting was created in 1776, which of course is the date of America’s brexit 242 years ago.

Doña Quixote has been knocking me around badly for a while. When I tell people I had a bad week, I see the question in their eyes, “What does that mean in real life?” Some friends actually speak it out loud. My first impulse is to cite the series of my most recent unmindful actions: While taking my morning meds, which I have to take with yogurt because water goes down the wrong way and sets off my cough, I spilled a day’s worth of probiotic goo onto the floor and kitchen carpet; I followed up with tilting my not-properly-closed bottle of instant coffee on the counter top, from where it sprayed a week’s supply of crystals onto the still-drying yogurt clean-up site, a receptive surface onto which my slippered feet crunched and mushed the latest debris until Peter, who was on the phone with our phone company to figure out why my voicemail was not working, shooed my out and undertook to clean up in my stead; sidetracked by these mishaps, I suppressed my need to go to the toilet and ended up not making it to the bathroom in time to save my underwear; once that had been dealt with, I brushed my teeth with my coconut and honey crème-pour-les-mains-in-a-tube rather than toothpaste. In the evening, when I was about to take my meds, I realized that I had take my evening meds in the morning. And so on.

Vincent van Gogh, Hanging Skeleton and Cat (March-May 1886).

I find, though, when I tell people about mishaps like the above, they imagine that their saying, “Oh, that happens to me too!” provides me comfort. It doesn’t. Such a response tells me that I have nothing to complain about, “because everybody—when you’re young and over-busy or later when you’re getting older—does silly things sometimes.” I could point out that my mishaps do not happen one once a day, or once a week, or once a month. In fact, they happen so frequently that my morning routine stretches to noon. Each “mistake” sloughs off another layer of my already threadbare ego so that, by midday, I am too scared to leave the house in case I have another incident—or two, or three—away from home where Peter is not there to help me overcome it. But this time I won’t stop at such evidence. Instead, I want to tell you, as truthfully as I can, what the week starting on Monday, July 2, 2018 felt like to me from the inside. Let me continue the day:

Do You See What I Feel? Dana Harrell-Sanders.

On Monday afternoon I had two doctor appointments: first, my six-monthly check-up with my pulmonologist, who has been trying to find the source of my chronic cough. Second, over the weekend I had suddenly gone totally deaf in one ear. From the way I sometimes had a quick window of hearing when I moved my head, I inferred that I needed the wax cleaned out of my ears. I was able to get an appointment for an hour after my pulmonology appointment. Since the morning’s failures had worn my self-image to the equivalent of a faded image on an x-ray, I resolved that I really needed to make some statement of “I’m still here” in the afternoon. To kickstart the endorphin flow that would fatten up my ego, I had to prove to myself that there were still tasks that I could complete myself without help from Peter: I would go to my doctors by Uber. I looked up the doctors’ addresses and typed them into the app to have them handy on my phone. By the time I had to leave, though, Peter had—after hours of holding—finally gotten through to the right person at the phone company and was awaiting instructions of what to do next. I told him I had to leave within 15 minutes. To do that, I  needed my phone 1), to call Uber and 2), to have as a back-up while I was out. Because Peter thought that he could solve my voicemail problem by staying on the phone for another 10 minutes or so, he said not to worry about Uber, he would take me. I was silently somewhat disappointed about missing the chance to be self-sufficient, but in my 400-pulse-per-minute chicken heart I was overjoyed not to have the responsibility of getting myself to the right place twice.

Crazy Woman—Lara Lisa Bella, Marko Köppe.

Peter finished the phone company call in good time, and we hurried to the car for the first leg of our journey. He asked me to pull up the first doctor’s address on Googlemaps, so I did. It took him only one glance to see it was the wrong address. While he started out in the direction he remembered that we’d gone to before—somewhere near Fashion Place Mall—I looked up the address again. He was right. Fortunately we were already heading in the right direction. Or so I thought, despite the fact that I have lost my ability to follow a map many years ago, even before my diagnosis. To redeem myself, I entered the address while saying it out loud and kept my eye closely on the GPS in order to tell him ahead of time where the next turn was going to be.

 Homme et Femme au Bouquet, Pablo Picasso (1970).

By this time, despite—or maybe because of—my desire to help, my anxiety level had shot through our Honda’s sunroof. Moreover, despite having confirmed the correct address myself, I again became convinced that we were going the wrong way. At some point the disparity between my sense of where we were and where we were supposed to go was so huge that I could no longer see the GPS instructions on my phone. Or, rather, I could see them, but I could not read or understand them. This had happened before, but not to the extent that it happened that day. Peter anxiously asked me what lane he was supposed to be in. I could not figure it out. I became so panicked that Peter pulled of the road. I felt  completely out of step with the world. It felt like just after you trip or slip, that brief unnerving awareness that you are falling. You see the sidewalk racing toward you, but you know you are too clumsy to break your fall with your hands, so you just wait for the impact. On this occasion, that dread stayed with me for minutes, for hours, for days.

Crucified by Pain. Dana Harrell-Sanders (2000). CNN.

I must have started to get the Edvard Munch silent scream face, because Peter turned into a side road and stopped. His eyes spelled concern and love. He took my hand and told me everything was okay, we would get there. I gave him the phone and he himself checked the address again. We were, in fact, going the right way. It still felt wrong to me, but I did not say anything. We soon arrived at the right place, which I recognized. Nevertheless, I was by then on the verge of a hysterical crying fit. I knew, though, that giving in to it would just make me feel worse. So I told Peter that I really wanted to go in by myself and suggested that having a cup of coffee nearby would maybe help him somewhat regain his equanimity. I knew him well enough to see that my total loss of self-control had scared him too.

Another Portrait Disaster, Cassandra I. Marko Köppe (2017).

In the doctor’s waiting room, my eyes kept filling with tears. I tried to think of everybody in the world who had it worse off than me, including the Thai soccer team in the cave and the thousands of kids Trump separated from their parents. Compared to them, I was just being a sissy. In this way, I managed to make it through my appointment. By the time I got back to Peter and he asked me how it had gone, though, I realized that I had forgotten to ask the doctor THE MAIN QUESTION WITH WHICH I HAD GONE TO THE APPOINTMENT, a cough-related issue about which my family doctor had told me to consult the specialist. Peter was marvelous—he just said, don’t worry, you can call her later. No big deal.

Peter, my Love, who always knows the way.

Now for the drive to the next doctor. It went a lot better. This time I did not touch the address, the phone, the GPS. Peter got us there and, when the doctor was done, I could hear again. That, however, did not get me back to a square one on which I could function. The events of the day had depleted every little bit of emotional energy I had. I had a nap when we got home, but still felt non-functional when I woke up.

Die Blaue Frauen, after Picasso’s Two Women Running on the Beach, by Marko Köppe (2017).

At last it was Monday evening. On Monday nights, Peter refreshes his soul with a salsa class at our studio. For over a year now I have not been able to dance salsa with him because it consists of one turn after the other—my balance is off and I get dizzy enough to fall over after each 360 degree whirl. We can still do bachata together—and are taking a class in that together—since my gracious, super-coordinated husband adapts the steps so that he can do the turning instead of me. Given the lumpen time it takes Peter every day to keep me calm and safe and together in a humpty-dumpty sort of way, his Monday night lessons and other dance-escapes during the week are essential to his maintaining a healthy state of mind. Even on the day I came apart, I insisted that he go despite the day’s happenings. He said he would, because Newton and Cheryl and the kids “happened” to be coming over to do their laundry, since their washing machine had broken over the weekend. By the time they arrived, I realized that (while they did need to use our laundry facilities) that they were also there to help us both. It soon became clear that they had already heard the story about my bad day. While having coffee during my first doctor appointment, Peter had apparently called both our kids to let them know about my disturbing new level of non-coping.

Ron Mueck, “Untitled (Big Man)” (2000); Smithsonian’s Hirshhorn Museum and Sculpture Garden.

I was both saddened and relieved that Peter had called the kids. I was sad because talking about my deterioration to other people—even Newton and Cheryl and Marissa and Adam—was something I knew he would only do in the moment if he were very upset. I was relieved that he had told them, though, because I so much wanted him not to have to be strong alone.

Peter’s support system—and greatest joy:  Left, Aliya and Peter go to an Oupa-granddaughter dance at DF Studio.  Middle, Oupa, the Saunders boys, and Marissa conquer an escape room. Right, Our aangenaaides, Cheryl and Adam, Peter, and our first aangenaaidetjie, Kanye.

The family is all there is: Left, Newton, Peter, Marissa with Adam in front of her, and Adam’s mom, Sandi, on a weekend we spent together near Canyonlands National Park. The kids and grandkids camped, Ouma and Oupa and Grandma Sandi stayed in a hotel in Torey. Right, Aliya with Cheryl, Dante with Newton, Adam and Sandi, Gerda, Kanye, and Marissa. (Peter took the photo).

Despite the fact that I was really too out of it to socialize after my awful Monday, it was wonderful to have Newton and Cheryl and the kids here. However, I did not have the wherewithal to hang out with them as usual, I played the dementia card with their parents and asked if they could watch a movie with me even though they had already used up their screen time for the day. So we watched the “Man on Wire” documentary about Philippe Petit’s heart-stopping high-wire walk between the Twin Towers of the World Trade Center in New York City. Nothing like the twin reminders about 1), a high-wire feat that made my vertigo-prone mind shudder and 2), and the reminder of the unspeakable loss of life when the Towers were brought down. My difficulties—especially in light of all the love and support I had—were far short of warranting my woe-is-me attitude.

Our family celebrates Cheryl’s birthday. From left, Gerda, Cheryl, Kanye, Marissa, Peter with Dante on his lap, Kanye’s friend Russell. (Photo: Jackie Cameron).

Before we went to bed on Monday night, Peter and I decided to go to Park City the next day. We needed the reparative power of mountain vistas and cool, clean air. The problem with one’s emotions, though, is that they are not subject to the sway of reason or the promise of relief. Despite sleeping a long night of deep sleep, I woke up on Tuesday in black depression. The usual misfirings of my morning routine did nothing to cheer me up. My limbs literally felt heavy—and I had absolutely no energy. I thought about asking Peter to cancel our outing, but I also knew from experience that a change of scenery was something that would lift my spirits. I did not say anything, and we left. After a nice breakfast amid the mountains and lots of walking-about, I perked up and confessed that I had almost not been able to come.

Unfortunately my improvement was not permanent. Even the subsequent temporary excitement on the 4th of July when Peter and I participated in the South Salt Lake City parade; neither did the succor of doing fireworks with Marissa, Adam, and Dante in the evening take my glumness away for long.

Left, On Independence Day, we attended flag-raising ceremony presided over by ‘s Mayor Cherie Wood. A Boy Scout troupe consisting entirely of refugees participated in the ceremony. Their Scout Leader had by now been closely involved in the lives of these boys for fourteen years. Middle, our former neighborhood was ethnically diverse, as reflected by the colorful national dress of our various neighbors. Right, fireworks at dusk at Marissa and Adam’s house with some of their neighbors. The boy on the left of the photo is Abel, Dante’s from-birth across-the-street friend.

In the video above, Mayor Wood introduces me as “Senior Citizen of the Year.” I did felt somewhat bewildered when she called me to the podium, because I did not expect it to be announced. After the speech, when the Mayor put out her hand to shake mine, you will see me in the video not quite knowing what the gesture required of me.

After the ceremony, I got to ride the parade route in a 1963 Chevy 409. Peter came behind in a 1970s truck that had an engine roar like a jet taking off.

Left, I did like dressing up in my frowsy 60s Queen Mother vintage dress and hat to match the 1963 Chevy 409 that the parade organizers had found for me to ride in. Right, Both Peter and I were supplied with a huge bag of candy with which to shower the street for the kids. Our family was waiting at a friend’s house on my driver Matt’s side. As we got closer, I asked Matt if it would be okay if I leaned over him to personally throw candy toward my grandkids. Being a grandfather himself, Matt said it would be fine. I’m not sure he expected my whole sexagenarian torso draped across his lap and half out his window. My grandkids loved their Ouma- and Oupa candy.

The Beach Boys wrote a song about the 1963 Chevy 409—I rode in the South Salt Lake City Parade in a white edition of the 1963 Chevy 409.

After the morning’s parade, I slept all the time until we had to leave for Marissa and Adam’s house for the fireworks. While a grandson on my lap did wonders for my mood for the duration of Adam’s and their neighbor Trevor’s and his son’s the firework extravaganza, my depression came back afterward like the cat of nine lives in the South African version of the song “Die kat kom weer.” There was no independence day for me. I actually did not get back to “normal” for the rest of the week, and my dark mood still plagues me for at least part of every day. It is hardly possible to “snap out of it” when you have at least hourly reminders that nothing in my small-vessel brain biology had changed for the better.

Nevermore, Paul Gauguin (1897).

Despite the length of my ilias malorum, I still have not explained what is going on psychologially that keeps me down. Let’s start with Gregory Henriques’s explanation in Psychology Today (Oct 2016) of the difference between sadness and depression. “Sadness is an emotional reaction to loss. It is your motivational-emotional system’s way of signaling that something you valued or something you hoped would come true was lost. Sadness is the way we digest the pain of our loss. Depression, by contrast, is a state of mental behavioral shutdown that persists even if/when external circumstances make a turn for the better. It could start out with sadness, but then intensifies into the “dead-ending” of the whole system of psychological investment, meaning the system cannot track or identify any positive or productive pathways of investment (or ways of being).” So am I therefore “just” sad that I have lost some things that I value greatly—my formerly calm demeanor, my self-control, my ability to function in the world of objects and tasks? Or has my sadness and self-disappointment morphed into depression?

Screws. Mark Collen. NYTimes.

Reading up on depression toward the tail end of a bout, as I have done many times before, convinced me that my dark days did constitute depression proper. Gregory Henriques says that a sadness big enough to shake the core of your identity can cause a fundamental change in your motivational-emotional investment system. According to Henriques, your subconscious makes a calculation “that what you are doing is not working, that you have tried the best you can and there are no good solutions, and so your system is shutting down the positive investment system and gets defensive by activating the negative/avoidance system to try to avoid further failed investments. The most prominent symptom is a general increase in negative emotion, especially feelings of futility, despair, powerlessness, and hopelessness. Also jacked up are feelings of fear and anxiety (future threat), shame, guilt and vulnerability, and frustration, bitterness, and irritability.

“The second most prominent symptom of depression—indeed the most important diagnostic symptom—is ‘anhedonia,’ which is the technical term for loss of pleasure and interest. In other words, whereas the negative affect system is jacked up, the positive affect system is toned down or muted. Desire, interest, excitement, joy, are all lessened or deadened. Virtually all the other symptoms of depression, including fatigue/lack of energy, difficulty with attention and concentration, disruptions in sleeping and eating, thoughts of death or escape, are consequences that stem from the fundamental motivational-emotional shutdown.”

Sorrowing man, Vincent van Gogh, 1890. Don’t forget Peter, who knows what lies in wait for us and is around my depression all the time.

I have known and lived with depression for many years and take medications to help control it. Other than the event I am writing about, I have experienced many bouts that have brought me to a standstill. However, they were not accompanied by the constant anxiety that felt, which was like living in an adjacent universe, not a parallel one, because that would be too ordered, but one that was titled in relation to the real world. Movement in this universe was like trying to run under water, seeing happened through a glass, darkly, and understanding speech was like a delay on a Skype call, when the speaker’s lips move, to be followed seconds later by the sound. The art of South Korean artist really resonated with me in relation to my feeling of dislocation and instability.

Left, Fallen Star (2011), middle, Bridging Home (2010), and right, Staircase (2010), by Do Ho Suh.

In an eye-opening essay about his own depression, Andrew Solomon states that anxiety the anxiety that comes with depression is not the same as paranoia. “People with anxiety disorders assess their own position in the world much as people without them do. What changes in anxiety is how one feels about that assessment. It’s possible to distinguish between anxiety and depression, but, according to Jim Ballenger, a leading expert on anxiety, ‘they’re fraternal twins.’ George Brown, of the University of London, has said succinctly, “Depression is usually a response to a current loss. Anxiety is a response to a threat of future loss.” About half the patients with anxiety or panic disorders develop major depression within five years. The diseases appear to have overlapping genotypes.”

Given my backstory of depression, I know anhedonia well—that heaviness that enters your whole body so that, for example, you can not even watch. And if you realize that when the TV is on, your hand is so leaden that you cannot lift it to push the OFF button on the remote control. Sometimes you cannot even conceive of a plan to get the TV off. You cannot even formulate a goal as simple as pushing a button, never mind reach out your hand to do so. That is anhedonia. 

Depression is not a “psychosomatic disorder” as in “her doctor was convinced that most of Agatha’s problems were psychosomatic.” Brain-imaging scans have indicated that depression changes both the structure and the biochemistry of the brain. Additionally, the disease of cerebral microvascular dementia, which I have, continually destroys brain cells, so that the structure and biochemistry of my brain is already damaged in a way that makes it prone to depression. According to Marnix J. M. van Agtmaal, MD, of Maastricht University Medical Centre, Netherlands, cerebral microvascular dementia is “associated with an increased risk for the development of depression over time. These findings support the hypothesis that microvascular dysfunction is causally linked to depression.”

Now for the good news that comes out of my look into the psychology and physiology of depression: the fact that my situation includes 1), a pathological brain malfunction that predisposes me to depression and 2), that it is rational to sometimes be sad about the circumstances of my life, and that such sadness will  sometimes morph into full motivational shutdown absolves me of the guilt that usually accompanies depression. After all, I have rational reasons to be depressed! This knowledge lets me off the hook of not being able to “snap out of it,” a cultural meme that many people still believe and that I had internalized in my childhood.

Karma by Do Ho Suh consists of countless men sitting atop one another while closing each other’s eyes.

The best news is that my trick of making-myself-write-the-first-half-of-a-title has worked. By trying to go on living—and most of this effort consisted of trying to write—I have come a long way out of my abject state. Andrew Solomon says that “you are never the same once you have acquired breakdown knowledge. We are told to learn self-reliance, but it’s tricky [because while you are depressed] you have no self on which to rely.” In my case, the self to which I return after any setback is always and will continue to be a diminished version of what I was the last time. But for now, I’m back.

That said, I know that my episodes of emotional/motivational breakdown will return, become worse, and—should I allow the process to continue—become all I am. I cannot and will not live indefinitely such a state. Once I am in shutdown more than I am out of it, I don’t want to live any more. A life without the ability to set a goal, never mind finding the motivation to pursue it, is below the quality of life I want for myself and my family.

Still Life with Skull, Leeks, and Pitcher, Pablo Picasso (1945).

This is how my crawling out of my mud hole progressed this time: On Saturday, July 7th, I set the goal to write this blog post. I was not able to start it then. I could not even think of a title, though I knew I wanted to talk about my mental behavioral shut-down. Each day during which I was unable to start on my goal set off a maladaptive cycle of guilt and self-blame. On Monday the 9th, though, my mind latched onto the idea of relating my horrible episode to the loss of control and resulting mayhem that starts out at the alien invasion in the 1996 film Independence Day. I wrote down the first part of the title, and that was my writing for the day.

It is now almost two weeks since the start of my mental collapse. From Wednesday June 11th, I was able to work on the piece several hours each day, albeit interspersed with long stretches of unproductive mulling about my situation, or non-refreshing naps, or just sitting around without the motivation to go to my computer. I canceled appointments I had made with friends. Nevertheless—despite my seeming lack of progress toward my goal—I was getting better. On Friday 13th, I got down to writing most of this piece. Today, Saturday, I may be able to complete and post it.

During our family trip to Capital Reef, I had the desire to go right up to the end of the cliff and gaze down the precipice as I have done at other national parks many times before. Left and middle, Newton helps me get to the edge and safely lie down. Right, Marissa stays close to revel in the awe-inducing view with me.

This time my brain-trick still worked. But what will life be like once I can no longer jumpstart my endorphins, when I can no longer—horror of horrors—write even on “good” days? It comforts me a lot that I have my family’s support to end my life when I can no longer rekindle any motivation to live. I believe I can still have blocks of good time and I will keep trying to make them happen, all the time knowing that Peter and my family are working much harder than I to make sure I have an amazingly high quality of life.

To reassure everyone that I am not about to put my suicide plan into action, I will reveal that I have made an appointment that I tend to keep about 2 1/2 weeks from now, July 31st. Ironically, the event I am “living for” is a non-trivial surgery to put a mesh sling around my nether parts against age and gravity. After several in-depth discussions with my surgeon—who warned me that full anaesthesia usually leads to short-term memory loss as well as some permanent loss—Peter and I agreed to take the chance that the negative memory effects will deplete my quality of life less than not having the surgery.

* * *

Like Will Smith’s 1996 Independence Day rescue of the world from an alien invasion, my resurgence will not last. I hope I will still have many do-overs, and I can only hope to do better than the 2016 summer sequel to my title movie, Independence Day: Resurgence. In a review on rogerebert.com, Christy Lemire suggests we could “look at [Resurgence] as a satirical metaphor for the growing sense of xenophobia and isolation that plagues places throughout the globe: ‘These invaders are coming here illegally to take from us and wreak havoc. We have to keep them out. We have to make Earth great again.'”

* * *

Never forget? Ha!

My alien invader is not tragic or illegal or mean-spirited—my throw-of-the-dice conceptual universe does not allow for a wise, omniscient, omnipotent power that dispenses justice or its opposite, acts meanly or kindly, looks out for one individual and smites another. My universe does not have consciousness or goals or a plan for resurgence. It just majestically wheels along toward its ultimate demise, when it will have lost all its thermodynamic free energy and enter into a state of “no you, no I, no tomorrow, no yesterday, no names, no memory, no molecules: matter itself released into energy, single photons stretched across light years of space.”

But here and now, still, it is enough