This is my first experience being with someone who is dying slowly. I’ve lost loved ones suddenly, without any chance to say goodbye. I’ve visited and taken care of friends and family during a terminal illness, but not for this length of time or this close to the end. Hospice has provided not only printed information of what to expect, but a variety of support personnel who function as educators as well as helpers. I was reasonably well prepared for the physical changes in my dying friend, but the rhythms in her decline have come as a surprise.
I – and most of us, I suspect – live my life with a greater or lesser degree of ritual. My days are structured with the things I do regularly, without much in the way of decision making, whether it’s my morning wash-up routine, the things I do when I sit down to work, preparing dinner and sharing it with my family, and so forth. The week has its own schedule, even though I work at home. I admit to having expectations about how each day will unfold, what commitments I have and what blocks of “discretionary” time. Although it’s been said that expectations are premeditated resentments (when it comes to our agendas for how other people live their lives), we humans seem to do better when things are at least slightly predictable. It’s exhausting to live in a state of not knowing what might happen next.
And yet that’s an aspect of caring for the dying. The doctors have told us the likely progression of the disease (in this case, ovarian cancer that has metastasized to the lungs). Hospice has provided booklets on “When Death Is Near,” that explains the processes most dying patients go through – withdrawal, closure, loss of appetite and thirst, confusion, unconsciousness, and so forth, as well as various changes in the body and its functions. They were careful to note that not all patients have all the symptoms, or in this order. The piece that either wasn’t there or I didn’t comprehend was that this is an inherently volatile, unstable, and unpredictable process.
My friend is dying peacefully. We are able to keep our commitment to her, which is to alleviate and prevent air hunger, and to keep her as comfortable as we can. Much of the time, she drifts into and out of consciousness. I sit with her, as I am doing as I write this, and she looks like she’s taking a nap, propped up on pillow in her hospital bed in the living room. When I returned to this essay after one of the inevitable breaks, she had badgered her other caregivers into taking her in her wheelchair into her garden in the rain, after being largely bedridden for over a week. I would never have predicted that!
About two weeks ago, she was sitting up on her own, talking with great animation to two videographers for a project on the stories of cancer patients. I brought out her red tango shoes, the ones with heels the same height as the size of one of her lung tumors. She proceeded to arrange her oxygen feed and demonstrate a tango step with one of her interviewers. Two weeks before that, she had gone tango dancing with a portable oxygen tank, which she handed to her partner to carry, along with a quip about having to dance really close. None of us had expected such a precipitous decline.
The decline isn’t regular in pace, and that’s what is unexpected to me. Instead of a straight moderately-angled downward line, it plummets like a descent into an oceanic abyss, then levels off and even rises slightly, as it did this afternoon. I have no idea when those drops will occur or how much decline will take place each time. Some changes affect us caregivers more than the dying person. For example, we went through a number of consecutive days where we had to modify the medication dosage and scheduling in order to achieve the same degree of comfort and breathing. At other times, there’s nothing we can do except adapt to the changes in the patient’s condition.
What am I, as a writer as well as a friend, to make of this? Living day-to-day and sometimes hour-to-hour gives new meaning to slogans like “Live in the Now” or “One Day At A Time.” In real life, it’s exhausting and heartbreaking, even when I accept that my friend is not going to get better, that’s she’s going to “wind down” until at some moment over which neither she nor I have any control, she will die. This does not make good fiction, even good tragedy. Fiction works because it has shape, which is seen most clearly in plot but must be present also in character and other aspects of the story. Even if I were to write a piece in which nothing “happens,” other than a character gets progressively weaker and more debilitated, less autonomous, and finally dies, that in itself would not be an effective story. What happens during that decline is the important aspect of fiction, whether it’s the journey to closure – or the struggle and failure – of the dying person or the effects on the people around her, those things can have intention, tension, complication, and resolution.
As I write this, I think, If only real life could have that degree of emotional coherence, and not be, as Mark Twain said, “One damned thing after another.”
I wonder if the “shape” of fiction, that aspect that gives us such deep satisfaction, is also present in potential in real life, if only we could learn to pay attention to it. We get so attached to What does this mean? and How does it end? because these are the questions that fiction addresses (among other things). After all, in our ordinary lives, it means whatever meaning we ascribe to it, and it ends in our own death.
Maybe the answers aren’t The Secret Clue or Happily Ever After. Maybe they’re How am I alive this moment? What do I feel? How does Spirit move in my life? How do I open myself and respond to the Spirit I see in another human being?
How do we dance together, oxygen tanks and all?