After letting her siblings know about Jackie’s decision, Kathleen and her mother got started. Jackie asked what the rules were so that she could keep them. They agreed that should Jackie ask for something to eat or drink, Kathleen would remind her of her goal. If Jackie wanted to continue VSED, Kathleen would keep withholding food and drink. If she decided she no longer wanted to continue, Kathleen would give her whatever she wanted.
Mother and daughter rolled out the plan with a drastic reduction in Jackie’s oral intake—a few spoons of yogurt and up to a cup of water per day. Although she rapidly lost weight and strength, after almost two weeks she was still far from death. She was disappointed every morning when she realized she was still alive. As the days passed, Jackie and Kathleen spent time looking at old photographs so that Jackie could pick one for her obituary. The dying woman picked one where she was about sixteen or seventeen. “I suppose she felt more like that was her real life,” Kathleen writes, “not the one she had now.”
Once the drastic cut in Jackie’s intake had been established, Kathleen’s sister arrived and, soon after, her brother and his children. Jackie’s doctor came to visit, too. Although he was against all forms of suicide, he set aside his own convictions and supported his long-time patient. Paying a house call four days into the plan, he told Kathleen that Jackie would have to stop all eating and drinking to ensure that her dying would not stretch out longer than two to three weeks. From then on, Kathleen gave Jackie only “quarter-sized ice chips” in very limited quantity.
On the seventh day, Kathleen’s brother said goodbye. After he had left, Jackie no longer left her bedroom. She complained of pain and Kathleen called the hospice. They went out to Jackie’s home and gave her morphine. By this time the dying woman’s mouth was already constantly dry, and a side effect of morphine was that it increased thirst. Recalling “an old Indian trick” her brother had told her about in childhood, Kathleen picked a small shiny rock out of the glass bowl in which Jackie had displayed the smooth stones and offered it to her mother. It worked and she sucked it for the rest of the time that she was awake. On the ninth day, Jackie went into a coma. On the thirteenth day, she died.
Kathleen ends her blog post with a reflection on the day of Jackie’s death. “The sun was shining in Morrow Bay. There was a light breeze. It was a day that, at one time, she would have enjoyed being out in, going for a drive or taking a walk.”
Reflection on Journal Entry of 5-24-2012
I have been too busy to write for a long time now—I see it is over two months since I last got to it. I feel anxious and frustrated because of not writing and am really aware of good brain time ticking by, since the multiple ways my brain is failing are more evident when I am stressed and tired.
We are now at Hurricane, near Zion National Park, with Newton, Cheryl, and their kids. Peter says—and I agree—that this is a vacation in which he feels very much loved. Newton and Cheryl are so considerate and loving, and Kanye and Aliya stimulating company. It is very gratifying to see that as my brain disintegrates, theirs are growing exponentially.
We were all so happy to get the news on our way here that Marissa is pregnant. The baby is due in late January of next year. Of course, giving the kind of time to a grandchild that I do will also reduce my writing time—but attentive time with my grandkids is the one thing I never regret spending time on.
One of the stress mistakes I made happened on Friday night when we arrived here. I was getting something in the car and was disoriented in space. I put my hand where I thought the seat was, but missed—so I fell out of the car. I felt shocked and embarrassed, particularly because I screamed while going down. I think I was more upset than I usually am about such a small thing because of a childhood incident when I was about seven or eight and we were living in the house by Oom Koot and Tannie Wienkie.
Some of my siblings and I were outside waiting for Ma to stop talking to Tannie Wienkie because we were going to drive somewhere. In boredom, Klasie and I started climbing in and out of the windows. At some point I was hanging out of the open window backwards, managing to stay up by gripping the window’s sides. My hands must have been sweaty, because they slowly slipped downward. I knew my grip was going to fail soon and I started screaming. Ma was probably so used to kids screaming that she did not react. I fell to the ground. I got a scrape on my arm and a bump on my head. While I felt sorry for myself at the time, in hindsight I feel sorrier for my mother—she was visibly upset that she had not paid attention to me. The irony is that even as a child I knew that my mother paid us much more of what I now think of as creative attention than any of the other farm mothers I knew: she hung a display board covered with a burlap bag near our front door where we nailed curly acacia pods, a twig of particularly large thorns, flowers we found in the veld, and mouse skeletons.
After rehearsing our end-of-life ideas with our children for about two years, Peter and I were ready to formalize them legally. In spring 2013, we discussed our situation with our doctor and a lawyer we had selected for his openness about pursuing the legal and financial implications of assisted suicide. During the months-long process of our lawyer’s and our own ongoing research into legal possibilities, we updated our children with every piece of new information. For example, we learned that it is possible for people who have a physical illness that is terminal and are of sound mind to move to a state where assisted death is legal (i.e., Oregon, Vermont, Washington, New Mexico, and Montana), fulfill their minimum duration of residency requirement, and apply for physician assisted death—an option that still excluded people like me. However, our lawyer obtained the contact information of a doctor in a different state (possibly connected to a network of like-minded physicians) who would be willing to prescribe a suicide cocktail so that one would not have to deal with the internet.
Once our lawyer had drafted the necessary documents, we met with him as a family—Peter, Newton, and I attended the meeting at the lawyer’s office in person; Cheryl joined in by video from South Jordan where they live; and so did Marissa and Adam from Chicago. While projecting the relevant pages of our documents, he laid out the trust fund he had set up together with our financial advisor for expenses related to my assisted death. It provides for the Saunders adults’ “death trip” to Europe.
No one cried in the lawyer’s office that day. The crying, for this phase of our plans, was behind us. There were times when we laughed: hearing the substance of our dining table discussions over the past years put into legalese was funny. It was like signing the papers for a house after you’ve done all the legwork and are ready to commit to a three-decade mortgage. The anticipation of the family bonds that would grow still stronger in the space your family is about to inhabit more than compensates for the leaky pipes, the broken furnace, and the stuck windows that are as inevitable as death.
When our lawyer started the meeting, there were no surprises, just a fleshing out of already familiar concepts. When we got to our advanced health care directives, he explained that Peter and I had given both our children as well as each of their spouses power of attorney to act as our agents in end-of-life decisions. With the relevant pages of our last will and testament and advanced health care directives projected on a wall screen and a computer whiteboard, he talked us all through the fine print. During our discussion of the health care directives, he showed a statement I had drafted and he had translated into legal language in order to expand the powers of our “health care agents” (i.e., our children) as they relate to my and Peter’s separate, individual wishes to have an assisted death. It is titled “An Acceptable Quality of Life in the Context of Dementia” and here are parts of it.
In addition to avoiding [mental and physical] suffering, a worthwhile life should include the qualities of joy, acceptance, “being with family, having the touch of others, being mentally aware, and not becoming a burden to others.” A life without these qualities results in an unacceptable quality of life. Death is as much a reality as birth, growth, mat
urity and old age; however, it should not include the indignity of useless deterioration, dependence and hopeless pain. Therefore, I have executed this Directive in part to relieve all feelings of guilt or responsibility for my death for my Agent and loved ones. I intend that my family, any person to whom I have granted the power to provide informed consent for health care decisions on my behalf, my physicians and their medical assistants, my lawyer and any medical facility caring for me and its personnel cooperate with me and with each other in carrying out my directions and in allowing me to die with dignity, by the use of euthanasia and/or assisted suicide for my person, if and when I do not have an acceptable quality of life.
I direct that upon my request or upon the request of any Agent designated by me with the power to make health care decisions, that physicians assist me in my dying so that I may die in a dignified, painless, and humane manner.
I would like my friends and relatives to regard the following circumstances as flags that the quality of life I want to have is dwindling below the level of acceptability, whether I am at that point still at home or in a care center:
• Do I wake up most days feeling joyful and excited about my new day, no matter the level of intellectual activity I am capable of?
• Do I look forward to more things than I dread?
• Do I appear and act happy for more hours per day than I appear and act unhappy?
• Do I complain frequently about loneliness, depression, or boredom?
• Do I sleep most of the day?
• Am I insatiable in my needs and demands of my caretakers, be they family or care center personnel?
• Does it take my combined caretakers more hours per day to care for me than the hours when I am not consuming care?
• Should I be at home, is/are my primary caretaker(s) stressed and worn out and constantly on the edge of a breakdown?
• Do I enjoy being in my garden (or that of the care center) watching the plants, birds, insects? Can I physically get there without needing a team of people?
• Are my caretakers’ children or jobs or quality of life suffering as a result of their care for me?
• Do my family members feel I am still within the boundaries of a meaningful life as they have seen me living it over the years?
• Do I give comfort to my friends, children, and grandchildren, or am I disturbed by their presence and suspicious of their intentions?
• Do I revert to the racism I learned as a child in apartheid South Africa (as my mother did)?
• Am I physically approachable without getting myself into a state of fear or anger; that is, is it still a pleasure for me to cuddle with a friend or child or grandchild? In other words, do I still provide (and enjoy) “the comfort of a warm body”?
In our lawyer’s office, after everybody’s remaining questions—there were hardly any—had been asked and answered, Peter and I signed the documents. On the way home, our conversation was an iteration, through various memories and anecdotes, that we were the luckiest parents in the world.
Physicist Enrico Fermi left a legacy far more positive than his eventual reluctant participation toward building Little Boy and Fat Man, the two fission bombs that ended the Second World War: the so-called “Fermi Questions,” physics puzzles he devised to teach students how to rapidly estimate a quantity that is either difficult or impossible to measure directly. One of Fermi’s questions has attained cult status among physics and chemistry aficionados—a cult to which I belong. The puzzle is known as “the last breath of Caesar”: When you take a single breath, how many molecules of your gas intake would come from the dying breath of Julius Caesar?
Fermi taught his students how to find a back-of-the-envelope answer in a few minutes by combining their general knowledge of the world and basic principles of physics. In the case of Caesar’s last breath, you already know the approximate radius of Earth; the formula for the volume of a sphere; the number of atoms in a liter of gas, namely Loschmidt’s number, or 2.687×10 19; the molecular masses of the major components of the atmosphere, oxygen and nitrogen; and so on. Using this information, it is easy to calculate the answer: every time I breathe in, there is a good chance that at least one of the molecules I take into my lungs will have been sighed out on the Ides of March, 44 BCE, by Gaius Julius Caesar, at that very moment, causing “the herds of horses which he had dedicated to the river Rubicon when he crossed it, [to] stubbornly refuse to graze and weep copiously.”
As I prepare for the day—even though I think it may still be years in the future—when I will tell my family and friends, like Caesar did after his triumphal march in Rome, that “I have lived long enough to satisfy both nature and glory,” the whimsy of Caesar’s last breath thrills me with the promise it contains of a connection between the material world, where my constituent parts will dwell after my death, and the world of the living, now and ever more—or, at least, the ever-more until our universe comes to an end.
The story I tell myself about my place in the universe—before I was born, now, and after I die—centers on my part in a grand cycle, of which my conscious life is but “a small parenthesis in eternity.” Like all grand narratives about the meaning of one’s life, mine is a bricolage of found tales, some of which I have kept as is because of their vintage, poetic charm, and others that I have refurbished for my own particular tastes. Here are a few cornerstones of my polyangular personal manifesto about “The Meaning of Life”:
Genesis: In the beginning… the earth was without form, and void; and darkness was upon the face of the deep. And the Spirit of God moved upon the face of the waters.
Exodus: In the beginning, the universe was very small and very hot. Within minutes of the Big Bang explosion, atomic particles came together to make the simple elements.*
Numbers: “Many African societies divide humans into three categories: [those] still alive on the earth,… The recently departed whose time on earth overlapped with people still here…, the living-dead. They are not wholly dead, for they still live in the memories of the living, who can call them to mind, create their likenesses in art, and bring them to life in an anecdote. When the last person to know an ancestor dies, that ancestor leaves the… [living dead] for [category 3] the dead.… As generalized ancestors,… [the dead] are not forgotten but revered… But they are not the living-dead. There is a difference.”
Psalms:
In the beginning was the word, the word
that from the solid bases of the light
abstracted all the letters of the void;
and from the cloudy bases of the breath
the word flowed up, translating to the heart
first characters of birth and death.
Song of Solomon: “The very molecules that make up your body, the atoms that construct the molecules, are traceable to the crucibles that were once the centers of high-mass stars that exploded their chemically rich guts into the galaxy, enriching pristine gas clouds with the chemistry of life. So that we are all connected: to each other biologically, to the earth chemically, and to the rest of the universe atomically.”
Acts: Existence precedes essence. There is no essence, or meaning to life, before human existence: living is a biological drive, that’s what cells do. We have to create such essence in time and in concrete, irremediably unique circumstances. We ourselves have to endow our lives with meaning. As Sartre puts it in Existentialism Is a Humanism, “man first of all exists, encounters himself, surges up in the world—and defines himself afterwards… Man is, before all else, something which propels itself towards a future and is aware of doing so. Man is, indeed, a project.”
Revelation: Thus spake Doña Quixote: My village, without which I would have no self-definition, reaches from our red front door to the event horizon of our universe, that shielding cloak outside of which the laws of physics no longer hold. My consciousness, that small parenthesis, is confined between the moment my developing brain had its first input from my senses-in-progress and the momen
t I can no longer conceive of my village or its inhabitants. In each moment of this wild and precious life, “the future coils, / a tree inside a pit. Take, / eat, we are each other’s / perfection.”
By the time I, like the rest of my fifteen million mind-addled Baby Boomer buddies, cross from being alive to the living death of madness—that is, when people will rightly say “Gerda is no longer Gerda”—the pre-mad Gerda will be relocated from the diseased matter of her brain to the hale and hearty minds of her earthly kin, those to whom she had grappled herself with hooks of steely love, there evermore to dwell in their keep, evermore ensconced in “the holiness of [their] hearts’ affections”—or at least for the evermore that will last until they, too, become either one of the zombie-style “living dead.”
Madam, there is only one exit: madness and death.
A categorical overlap bridges the living dead and the wholly dead. This intersection is a material one; it happens on the level of molecules and atoms. Given that every living creature is assembled from elements forged in the nuclear furnace of some high-mass star from which their progenitor during its final rally before becoming wholly dead Big-Banged its contents into the immense sphere within which lucky Earth—a Goldilocks planet: not too hot, not too cold, just right—would eventually pull itself together from the bountiful debris. Using these raw materials for its countless projects, Earth recycles them through successive generations of rocks, plants, animals, air. And so our planet will continue until our sun, being, alas, too small to go out in explosive style, will in five billion years use its last gumption to bake Earth into pristine sterility, after which Brother Sun will await, together with its by-then-cooled-down-to-freezing planetary acolytes, the collision—already in progress—between the Milky Way and her sister Andromeda, causing our solar monastery to disband forever, albeit a short forever that will lead to a new beginning, a recycling of us and ours in a burst of new stars and maybe another Goldilocks planet or two where once again creatures that breathe may arise to live a final forever, the forever until every star in Mother Universe blinks out, even as its matter, together with the matter of whatever creatures it had gifted with life, becomes more and more attenuated under Mother’s expansion until the dark energy that propels her runs out and she, every rotund bit, reaches a temperature of absolute zero, when even her quantum parts will be immobilized and she, who had been born in a big bang, expires in a whimper.
Memory's Last Breath Page 24