Failing toward the moon: as Doña Quixote tumbles toward the dark side, Gerda is gentled into a course correction
Featured image: Still from a 1902 French short film titled A Trip to the Moon ( Le Voyage dans la Lune) directed by Georges Méliès. Inspired by sources, including Jules Verne’s “moon” novels the film follows a group of astronomers who travel to the Moon in a cannon-propelled capsule, explore the Moon’s surface, escape from an underground group of Selenites (lunar inhabitants), and return to Earth with a captive Selenite. The Village Voice named A Trip to the Moon one of the 100 greatest films of the 20th century—it is widely regarded as the earliest example of the science fiction film genre ands been one of the most influential films in cinema history.
“It takes a lot to stand there and put your head through a noose.” So says Peter Berry about his second attempt at suicide. This plunge into darkness came after a three-year medical process to find why—after running his Suffolk, England, timber-cutting business successfully for 24 years—he needed sticky notes all over his office to remind him of tasks he used to do instinctively; and why his wife and daughter noted his increasing forgetfulness in his home life too. It took three years of tests by doctors and specialists to determine that he had early-onset Alzheimer’s and was told that he had eight to ten years maximum to live. He was 50 years old. His diagnosis felt like a pyrrhic victory, won at too great a cost to do him any good: he fell into a deep depression. He believed the world and his family would be better off without him. His first suicide attempt failed.
Pyrrhic Dance: Byron Browne, 1952.
Peter Berry for the second time prepared to take his own life. As he was about to put his head in the noose, he was struck with an insight: what had brought him to this moment was that, other than his wife Teresa and daughter Kate, he had no support. “The doctor had handed us some leaflets,” he remembered,” and told us to get on with our lives. We were on our own. Why am I and others with dementia not getting any help? And their families. It is not just the individual who gets a diagnosis, it’s the whole family.” He took his head out of the noose. If no one else was doing something about it, he thought, then I must. After months, years, during which his life loomed ahead with no purpose, he now had a goal: he was going to make a video every week and tell others about his aloneness and educate them about how to find a forward direction again. Seven years after Peter Berry’s life-giving course correction, I met him and three other fellow-dementers online when the five of us participated in an online Q & A under the auspices of AlzAuthors. It was titled “Everything You Always Wanted to Know About Living with Dementia But Were Afraid to Ask” (2021). Even then, Peter Berry’s achievements as an advocate and inspiration for those with dementia were already legendary. His weekly video had been only the start—his new self really came to full flower when, in addition, he started cycling across the English countryside with his regular companion, Dr. Deb Bundt, as well as other friends sometimes, and raised over £20,000 for dementia charities through cycling challenges.
“I’m passionate about all types of bikes and own a penny farthing, a single speed bike, a road bike, and a 1950’s Claud Butler.” Some years ago, Peter (accompanied by his friend Dr. Deb Bundt, shown above) undertook a cycle challenge to traverse four counties of Great Britain. In a week-long ride, Peter completed the 250 miles in its entirety on his penny farthing. On September 1, 2023, Peter, I, and the other panel members (whom I’ll introduce in a future blog), will participate in a second edition of AlzAuthors‘ “Everything You Always Wanted To Know…” I’ll send out the full details soon. It is open to everybody. You can Register here for the meeting link.
When I myself recently plunged into a deep depression, I thought of Peter Berry’s remarkable exit from a suicidal depression to a life with purpose and joy. His “coming out” was triggered by a realization that, above all other things, the indispensable foundation of a joyful life is a beacon to live toward: a goal, a purpose. I will tell you about my depression and its causes, not to demonstrate that my life is terrible and that people ought to feel sorry for me, but rather as an example of how a relatively a minor event can wreak havoc with a person living with the mood swings of dementia, from calm to tears to anger and all the way to hopelessness, feeling your’e a burden, even thinking of taking your own life. My veer to the dark side started with a physical difficulty that, before, I would have categorized as far lower on the stress hierarchy than my pelvic floor surgeries over the last years : it was “merely” a worse than usual bout of my arthritis. It was my own fault. I was hyperfocused on finishing a blanket I’d started knitting before Covid—it was for my oldest grandson Kanye and I very much wanted to give it to him on his 16th birthday at the end of June. I missed my self-imposed deadline—now two months in the past. Given that I and my fellow-dementers are not known for our rational decisions, I kept on knitting the still-missing panel and sewing together the completed ones despite the fact that my hand was getting more painful by the day. Before I’d even finished sewing half a panel, I had to stop: the pain, weakness, and swelling had actually expanded through my wrist and fore-arm, as far as my elbow. When I eventually told Peter about my arthritis, he convinced me to put my hand “on ice,” both literally and metaphorically. To do nothing that required joint movement. He found me a wrist guard. He took on the extra work of preparing everything related to our meals that could not be done with my left hand (Ha!—enough fingers on my left hand to count them). He cleared up after meals, unpacked the dishwasher, did whatever other chores I usually performed to keep the house running.
In search of my scar, Julien Cardenal
Despite Peter’s giving my achy hand a vacation, the arthritis moved to my spine, down my back, all the way to my tailbone. Peter helped me not to forget to take the maximum anti-inflammatory allowed and also also gave me hand-massages and full back rubs—he learned the skill from his father, who had massaged out his family’s aches and pains ever since Peter could remember. Throughout our lives, Peter has done that for me and our kids. (I gamely try to reciprocate with my weak arthritic hands…) Despite me being loved and cared for in every possible way, my world fell to pieces once the multiple tiny endorphin-inducing activities that provided me with a daily series of minuscule goals came to an end. They were what, in hindsight, enabled me to live with somewhat good cheer. Taking my hands out of the equation still left some things that I could do: walk, but only when the temperature was in the 80s; the rest were passive: read, listen to my audiobook, and watch TV. I All of these activities together did not result in enough endorphin spritzes to keep my mood manageable. I felt that I had no goals left in my life. Shockingly quickly, I sank into deep depression. The days day loomed endlessly and empty before me. I could barely get out of bed.
I’m waiting, Catherine Velardo.
Depression is notoriously a companion to dementia. A recent article titled “A new study finds a strong link between depression and dementia” reports that if you were diagnosed with depression as a young or middle-aged adult, you are twice as likely to be diagnosed with dementia later in life, as compared to people without depression. The same article states that being prescribed an antidepressant within six months of a depression diagnosis had no effect on the rate of dementia diagnosis later in life. Although I experienced depression in my early thirties, I held out against medications until I was in my late thirties. I would take them for a while, wean myself off, and lasted a month or two without them. Then on again. Since my menopause in my mid-forties, however, I have never dared go off my meds again and continue using them still today. In light of this information, my depression had been but a harbinger of more challenging mental issues awaiting me. Little did I know that something as small as not being able to use my hands would wipe out the skills that help me keep depression at bay. Little did I know that not becoming depressed would depend on goals that have shrunk to jobs that, in pre-dementia times, were just annoyances that had to be done so that I could get on with my REAL life goals. Little did I know that the loss of such humble ambitions would send Doña Quixote into free fall toward the dark side of the moon.
Jose Bonell, The Last Hour, 2023. Chekov: “Don’t tell me the moon is shining; show me the glint of light on broken glass.” Bonnell is a Catalonian artist based in Barcelona. His oil paintings “traverse and reinterpret the world of folk and fairy tales. Appendages are featured widely in the works: feet, legs, a spidery hand with nine fingers. Bonell’s tales spin a scheherazadian web, not relying on classic narrative structure but rather telling bits and pieces of stories, allowing us to imagine what we cannot see.”
The title of this post, “Failing toward the moon,” is derived from a statement often found in inspirational goal-setting writing: “A spacecraft is off course at least 97% of the time it takes to get from the earth to the moon. Put another way, for every half hour the ship is in flight, it is on course for less than sixty seconds.” In this context, the observation is intended to encourage goal-setters to accept false starts and be prepared to make course corrections along the way. The statement is actually scientifically incorrect: a spacecrafts trajectory includes the” corrective” rocket firings that have to be made to achieve, for example, the desired height of the orbit above the moon’s surface, which depends on the goal of the mission, such as landing on the moon or orbiting for observation only. My title is instead based on the scientifically valid observation that a lunar craft is not pointing to its target for at least 97% of the time it takes to get from the earth to the moon. In the case of my depression, the inspirational version might actually be the better suited of the two: in deep depression, I was not only not pointing at the target but had also completely lost sight of any possible target for which a trajectory needed to be planned.
In the case of Apollo 13, the target (moon) had to be changed after the oxygen tank exploded in order to return to Earth. In other words, the trajectory had to be changed. Note the 4 course correction that were required toward the happy ending of a “successful failure” when the 3-member crew returned safely to earth.
My turn from the dark side this time is all thanks to Peter: a few days into my misery, he told me after breakfast that we were going out as soon as we were dressed. He did not as usual seek my opinion. I voiced no opinion, just got ready to leave the house. He took me to the mall coffee shop, where we had a nice talk despite me crying behind my napkin (not my first recent weep by all means…). I then felt ready to take a walk in the air-conditioned space. Despite my still aching joints, I clocked up more steps than I had for weeks. Endorphin squirts ensued! Back home, I was mentally exhausted and all I could do was sleep. But is was the best sleep I’d had for a long time. Peter repeated this “intervention” for several days in a row. The exercise and sleep gradually did its job. I started feeling better. I still can’t be with people for long, I sleep a lot, my arthritis is not gone. But I could start spending about an hour a day on the computer, mostly researching and reading about depression rather than writing so as not to overuse my sore hand. I walked obsessively on my own in the corridors of our apartment building when it was over 80 degrees outside and after about 8 pm when it had cooled down, I ventured outside (if I still had enough energy left). This post shows that my arthritis has improved to a point that I could write again, but not too long at a time. I would not have come this far without Peter. I am glad that my will was at the start so weakened that I was able to give up my stubbornness about being independent and just listened to my husband like an old-fashioned wife. I want to say that even though I thought about suicide, I did not actually plan to do it when I was at my worst—just did not have the energy. I did at times wish I were dead and looked forward to the time when I will have reached more of the criteria I had written down for when my life would no longer be worthwhile and when it would be time to put my self-death plan into action. After Peter course-corrected my downward spin and I started feeling better, I recommitted to my promise to him that I would try my very best to not take my life unless it had become completely unbearable. And not without telling him and the kids first. Thanks to him, I am still here and inching my way forward toward more joyful days with him and the many other people I love. I was so lucky, though, that even at my lowest, just Peter’s being in-the-world functioned for me as a steady point to which I desperately wanted to cling. Now that I’m better, I think of his ability to point me back to terra (somewhat) firma is a feat as remarkable as that of the ground crew and team of astronauts who guided Apollo 13 safely back to a splashdown in the Pacific.
The Sun, 1912, shown in an exhibit titled A Less Anxious Edvard Munch shows some of the more upbeat paintings than the one Munch is most famous for, namely The Scream.
Thanks to AlzAuthors, I now look forward to a right-hand-independent goal (hand sore again after too much writing…couldn’t stop because of the flashing beacon of a pre-dementia-style goal) that goes beyond my daily small targets: on September 1 my four Less Anxious than Doña Quixote dementia buddies and I will I’ll be catching up online with each other and the founder of AlzAuthors, Marianne Scuccio, in a repeat of our earlier Q & A. If you’d like to spend a zoom-hour with us, here is the information for registering:
This is a reunion of five authors who came together on June 15, 2021 to talk about their diagnoses, how they cope with their conditions, manage to keep active and vital, maintain a positive attitude, and much more. We wanted to get together two years later to see how their lives have changed since we first met.
There is no fee to attend, but donations are welcome. Please donate here.
Please register to receive notice of when the recordings go live.
Friends and family are welcome! Please share this information with any caregiver groups, online or in person, you belong to.