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?
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