In October 2017 our dear friends Mila and Willie lost their house to the Santa Rosa fires. In April 2018, Henry and I made plans to drive out West to see them and bless their new home under construction on the same spot. The footings of their foundation had been poured so we could sense the layout of the rooms — which way the entrance would face, where the kitchen would go, how Mila’s studio would fit in, where the hearth would stand, and so on.
I remember Mila and Willie telling us about the night of the fire, how the hot wind made fire-nados, how the approaching fire sounded like an oncoming train, how Mila couldn’t sleep that night and stood outside and saw the fire coming, but she could barely wake Willie up in time to grab the dogs and a change of clothes. How lucky they were to have fully insured their home, and to have an empty rental to flee to.
I remember standing outside under the scorched trees they hoped would recover. They were telling us about a neighbor who did not wake up in time and died in her bed, as Willie might’ve done had he not been awakened. Suddenly I felt something strange tickling and brushing the right side of my skull. I remember taking off my baseball cap like batting away an annoying fly. I surprised myself by saying aloud “No — you can’t come inside. I’m sorry but I can’t help you. Go away. Go find someplace else.” I remember thinking that this incident had something to do with the woman killed in her sleep by the fire. I told Henry and Mila and Willie and they believed me.
Now as I recollect these events, I wonder if it’s too wacky to wonder if this might have been the genesis of my brain cancer. Who is to say with any certainty? Most of the doctors I’ve consulted admit to being mystified about the origin of glioblastoma. Like many cancers, it doesn’t seem to lend itself to a tidy and predictable chain of cause and effect aside from some disturbance to the cell’s life force. I didn’t think to ask the surgeon how old my tumor was, or how long it would take for a tumor to grow to the size of a ping-pong ball. Could it have taken from April 2018 to July 2019? Is it possible that the unhappy traumatized, lost and confused spirit of the woman tried to gain entrance into the warm refuge of my gray matter? Before you snort in dismissal, why is this genesis story any less plausible than the non-answers most doctors give?
Or is it more likely that the origin of the tumor was environmental? Back in the 80s, Mila’s mother Gunnell lived for a few years in the same Mojave Desert ghost town as Henry and I did. Darwin doesn’t show up on many maps, but in its heyday, the mining operations were famous for silver, tungsten, zinc, and lead. Tailing piles and leaching ponds lay scattered on the west side of town, resulting in toxic dust blowing everywhere when the west winds were strong, even with the windows in our shack closed . Add to this the fact that China Lake Naval Air Weapons Station lay to the south of Darwin. Who knows what secret toxic brews blew in from the south with the capability of disrupting or mutating the template of our DNA? To my knowledge, at least three other Darwin residents also had or have cancer, including Gunnell.
Later, in the 90s, Gunnell and her husband Bob, and Henry and I lived in the same tiny town in Colorado, not another mining town but a farming town with a different stew of toxic chemicals. We bought the house that Gunnell and Bob fixed up and lived in it for nineteen years, far away from the smog and stress of cities. Even so, I doubt there’s any place left on Earth that’s not downwind of, or in close proximity to, some lethal environmental catastrophe. One neighbor retrofitted the scheme of his house so the pervasive underground radon would vent safely out. The windows in our house were so poorly hung that we figured we had a cheap and low-tech ventilation system already in place.
Years later, after Gunnell and Bob moved away and she died of brain cancer, we sold the house to a younger couple who lived there a couple years and then moved away. The woman is now dealing with cancer. Is it just coincidence, or was there something about the environment of that small farming community, or that particular house, that engendered cancer in three different women? Only a highly trained epidemiologist would be able to see through the window of that mystery.
It turned out that going to visit and bless the construction site of Mila and Willie’s new house was not the only reason we visited California in the spring of 2018. Right before we began the drive from Colorado, my oldest sister Nancy called to say that my next oldest sister Susan was ready to say goodbye to all of us and enter hospice. If we wanted to see Susan, we should come now.
Susan had been challenged for years by a rare blood disease, the genesis of which may have been linked to an earlier pregnancy marred by genetic errors in the fertilized egg which then became malignant. Susan believed the chemo she endured caused her blood disease, a kind of pre-leukemia. (yes, dear reader, I realize that since two sisters have had cancer, perhaps there’s a genetic creation story to my own.) After trying many types of treatment, Susan and her spouse Jim had left their home on the big island of Hawaii to be closer to the San Francisco Bay area where she hoped to have a bone marrow transplant. But alas, after months of waiting and lining up a donor, her blood labs failed to reach the minimum levels to safely endure the operation. She had already undergone a few blood transfusions and could not foresee an endless future of such radical and costly intervention. She made a clear decision to stop treatment and was ready to say goodbye.
Nancy, who by that time was dealing with her own cancer, coordinated visits for Susan in the tiny Sausalito apartment Susan and Jim had rented. Susan’s day bed dominated the living room by a big window. Nancy was the gatekeeper, scrupulously carrying out Susan’s wishes to see her siblings one at a time for short visits stretched out over a few days right after her last blood transfusion. These visits would not include spouses or cousins or kids. After the visits were over, Susan wanted us to go home and give her privacy so that her daughter Joanie, Jim, Nancy, and the hospice staff could see her through. No memorial, no funeral.
Susan’s clarity was a gift to all of us – at least that’s how I saw it at the time, and still do. It was as if she had imagined a blueprint for how to handle the event of her death and she invited us into the last few days of her living room. In retrospect, I think this kind of clarity coming from Susan was surprising, given that she spent much of her life raising a certain herb, and usually positioned herself in the outer orbits of our family’s constellation, for example, living off the grid in rural Mendocino County, then later living on the Big Island, and being generally enthralled by left leaning perspectives on the demise of the American Empire. She was not exactly a standard American citizen, something with which I can completely identify, being a pattern-disruptor and fringe-dweller myself. Given my own diagnosis, I can also identify with the clarity that disease and impending death can bestow upon us, if we open to it. Susan was clear about what she did and did not want.
For example, when it was my time to visit, I began to tell her the story about brushing away the strange “visitation” to my skull as I stood near Mila and Willie’s construction site. When I shared my speculation about what might have been happening on a spirit level, Susan interrupted me and said clearly but without hostility, “Nope, no spiritual stuff.” None in our family were religious types, but I admit to an interest in mystery, mysticism and spirit. Susan wanted none of it. This was her show and her living room, not mine, so I was happy to take a different tack.
I started to retell Susan the story about dad’s death, which I believe was a conscious decision not unlike the one she was living through right then. Dad contracted polio when he served in the Pacific during World War II. It affected his upper body and when he returned stateside, he spent six weeks in an iron lung in Warm Springs Georgia. As an athletic and robust man, my father must have viewed these game-changing events as ruining his life scheme. He told me that the consensus among those recovering was that retaining full muscular control of one’s legs was far preferable to becoming wheelchair-bound. In short, if he were ever confined to a wheelchair, that would be his cue to exit. This kind of unemotional, pragmatic decision-making delivered with a dryly ironic and self-deprecating humor was familiar to me, the child of a New England family. Except for glimpses of bitter anger, Dad’s emotions were kept in check with little room for sentimentality and none for self-pity. He might’ve enjoyed today’s (to me) uninspiring idiom, “it is what it is.” Although he may have been resigned to the fact of polio, he was careful to draft an exit door into his blueprint, should circumstances warrant it.
Those circumstances arose when many years later, Dad broke his hip due to what is now known as post-polio syndrome. The way Mom told me the story was that when dad got home from the hospital, she came into the bedroom one night to ask whether he wanted to be wheeled out to the dining room or have supper brought to him in bed. He objected by saying “what do you mean? I can walk.” Mom retorted “no you can’t, Dick. We’ve been through this before.” When he still insisted that he could walk, apparently Mom had had enough because she said with uncharacteristic bluntness, “show me.” When Dad tried to swing his legs over the edge of the bed and realized that he couldn’t, he slumped back down onto the pillow.
Later, when Mom came into the bedroom to kiss him good night, Dad told her that she was beautiful. For a dry and reserved Yankee, this was uncommon behavior on his part. My siblings might disagree, but I rarely saw displays of affection between my parents, especially coming from my father. Mom must’ve been delighted.
Later that night, the nurse woke up Mom to say Dad was gone.
I believe that when he realized that he was bound to the wheelchair, my father came to that point in his blueprint where the logical and pragmatic course of action was to open the door and exit. He decided.
The story of Dad’s death is the same story I told to my mother after a major stroke which left her aphasic in the early 90s. We were sitting in the sunroom off the kitchen of the house she had bought in Berkeley to be closer to my sisters after Dad died in 84. She had left the East Coast behind, married Bob, an old family friend, and had a few good years before the stroke rendered her right hand pretty much useless, drawn up into a claw which I would massage and tried to flatten out when we sat on the sofa. Now aphasic, Mom could not speak in sentences, (unless they were spoken in French, or sung as I later discovered), so that to communicate, we had to pose yes or no questions. However, like many women, including myself, Mom’s yeses and no’s hadn’t always been reliable; now with the stroke they were even less so.
She and I were alone at the kitchen table and I was reading to her from Beryl Markham’s book West with the Night but I could tell that Mom was restless and wanted to talk about something. I tried many yes/no questions but none of them were the right one. She kept insisting that I knew what the right question was. “You know,” she kept saying. I tried to capture this awkward conversation in a 10-minute play called “20 questions” in which the daughter finally and reluctantly realizes that the mother wants to talk about how one decides to die. So I retold Mom the story she told me of the night of Dad’s death and how he made the decision to go. I could see that she recognized the story and telling it gave her some measure of peace. She still didn’t know how she was going to decide or when it would happen, but at least it appeared she no longer felt quite so terrified or alone or helpless. Maybe she was drawing up a plan within herself, a blueprint-in-progress. At least that is my hope.
The year 2020 was brutal for so many reasons — the cancer of racial injustice and white supremacism, the insanity and hysteria of conspiracy theories, the assault on facts and science, climate change denial, the wrecking crew assembled by our 45th president with the intention of shredding the fragile and flawed blueprint of democracy, and of course the pandemic itself. And this list doesn’t begin to include personal tragedies disrupting the patterns of life within each home.
Perhaps many people took a covid-be-damned trip sometime in that terrible year, flaunting common sense and safety precautions. Henry and I did. Surprisingly, I made a major art sale of wood sculptures and we decided to deliver and assemble them in person rather than shipping them to my collector in Omaha. It was a crazy move, indefensible on so many levels, but it felt right at the time. However, later in December when it was clear that my oldest sister Nancy was in a decline from which she knew she would not recover, we made the decision not to travel to California to say goodbye to her. My California family supported this decision. Too crazy, too dangerous. Not to mention the danger such a trip would pose to my own vulnerable immune system.
Meanwhile, Nancy’s cancer had metastasized pretty much everywhere including her brain “in spots too numerous to count.” She was wobbly, forgetful, and sometimes aphasic, all the while desperately trying to maintain control. She wasn’t ready to go; she still had so much to live for, and losing control made her furious. During one phone call, Nancy pretty much bit my head off for gathering information about her from my other sister. She didn’t want news about her cancer or state of health filtered or disseminated by anyone other than herself. She wanted control of the gateway. Although I can’t say I enjoyed being the brunt of her anger, I savored the fact that her fury made her lucid and articulate. She knew exactly what words she wanted to say and she said them.
For several days I feared that this would be our last conversation, but to my relief and perhaps to hers, I was able to speak with her on Christmas Eve. This time the gateway was open and she was asking important questions. How do you explain that you do not want to see everyone one last time? How do you decide when it’s time to live or to die? How do you let go of what’s still unfinished? I thought of all the times I have told the story of dad’s death and how he decided to go. Reminding her of this story one last time seemed to satisfy her, return to her a measure of control. She passed through the gateway five days later.
Perhaps like a spider I cling to this story— this blueprint-in-progress — and keep weaving it and trying to decipher its code because it is so satisfying to imagine that even when faced with tragedy, illness, unspeakable loss, and impending death, it is possible to be clear, decisive, and courageous.
Perhaps I cling to this story because it asks the big important questions — who are we, why are we here, where are we going, and what do we want for ourselves and our children? The story empowers us to be the architect of our own living and dying.
Perhaps I cling to this story because the story itself is embedded in my DNA. I seek for meaning even when the web of cause-and-effect is layered like a complex musical score in an obscure key. Like you and like everyone, I am a unique blueprint-in-progress, a one-of-a-kind assemblage of the random and chaotic bits of stardust we all share, tracing back to the cacophonous genesis of our universe when we were all one.
The story helps me live. When it is time, this story will help me die.