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.
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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?

From the time we’re small children, it seems that someone is always urging us to hurry up, to not dawdle, to stop procrastinating, to keep “on target,” and to do things faster. We are supposed to race through our lives without paying attention to the wonders around us (except, of course, when we’re supposed to be observant and appreciative). Of course, what is wonderful to a child is all too often invisible to the harried parent or teacher who herself has deadlines and schedules to keep. Homework assignments are Important; watching snails is not.

When I began to write professionally, I found myself juggling motherhood, a day job career, and the inner-driven need to set down the stories in my head. Writing time was precious and all too scant, and I had much to learn about the craft. My initial style involved “pantsing” (writing “by the seat of your pants”) or, as I put it, “taking a flying leap off the edge of reality, ” and then revising, revising, revising. As a consequence of this and the limited, fractured time periods available to me, my stories progressed slowly. I remember meeting a certain published author at one of my first convention, who breezily talked about how he never revised, he sold his first draft novels, and he produced three or four of them every year. I cringed to think of my one or two short stories and maybe one novel draft in that same time period (keeping in mind that I needed three or four – or more! – revision drafts). Was this what professional writers did? I wondered. And how was I ever going to produce that much, that fast, and of that professional quality?
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(As a slightly smirky footnote, I have no idea what happened to that writer. I haven’t seen the byline in decades, so maybe that strategy wasn’t so successful after all. Or the name might have been changed, as so often happens. Me, I have four traditionally-published novels and an ebook short fiction collection coming out this year.)

To my great good fortune, I also encountered writers who had learned to listen to their own creative rhythms and understood that getting the story right trumped getting it fast. These were not writers who use “I listen to my inner muse” as an excuse for not writing, or who polish endlessly and never submit their work. These were professional, published authors. Some of them sold many books and others only a few. Not all were genre writers, but all prized their craft. I met writers who considered a day successful if they got a single paragraph exactly the way they wanted it; others measured their daily productivity by hours spent or pages finished. They opened my eyes to many possibilities for measuring progress besides how fast I could turn out a manuscript.

As it turns out, I found that different stages of a story call for different speeds. I work best when I draft quickly from outline and then revise slowly. I give myself permission at all stages to take a break and think about a “stuck place” (whether that is a block in the sense of “I have no idea what comes next” or just a niggling feeling that something isn’t right). I go for a walk, I clean house, or I pick up the phone and chat with a friend about something utterly unrelated to writing. When I’m willing to do this, I end up in fewer dead ends, I need fewer subsequent drafts, and I’m more in touch with the internal fabric of the story.

All this has a great deal to do with observing and accepting my own creative rhythms, but also with patience. Patience loops the topic back to my opening, which is how we find our way back being fully present with what is unfolding at the present moment and at a pace too often at odds with the regimented, overcommitted, multi-tasking, hurried expectations around us (not to mention the financial pressures for a working writer to produce so many books a year). It’s all very well to recite slogans like, “Stop And Smell The Roses,” and quite another to shield ourselves from those expectations.

I’ve been blessed with several Teachers of Patience and I’m trying to take what I have learned from them and apply it to my work. One of my most significant teachers was an elderly Quaker woman, who welcomed me when my husband and I began attending the local Meeting. She and I had many wonderful conversations before she died a few years ago, some at Meeting or the monthly potlucks, others at our lunch dates. She walked very slowly due to various medical conditions, but I quickly realized how important it was to accord her the dignity of doing what she could, of being autonomous. She did need my help from time to time, with opening doors and such, and she taught me ways of offering or responding that maintained that relationship of respect. It became a spiritual exercise to adjust my own walking speed to hers, to hold the door for as long as she needed, to move with her as if in a slow-motion dance. Adagio, not Presto. So much of the joy of writing is discovering new experiences, new points of view, stories told by characters who are not like us and who live in worlds not like our own. Here was a precious chance to experience living at a different pace.

Now I am staying with my best friend during the final weeks of her life. She, too, is moving slowly, more slowly with each passing day as her body winds down. I watch her savoring every moment, paying attention to her strength, which varies from day to day but it never what it was when she was healthy. Slow means taking the time to be as fully alive and present as possible. Slow means reordering priorities (eating dessert first, as it were, choosing only the most precious things to spend waning energy on). Slow means savoring the meadow at sunset, perhaps with a cup of hot chocolate and a dear friend.
Take your time; there’s no need to hurry.

I've been following jaylake's cancer blog with a great deal of concern and sorrow. He is one of a number of friends, some very dear to me, who are facing terminal illness. I suppose it is inevitable as one ages that more of one's friends develop various serious medical conditions. When we are children, most of us have few if any experiences of the death of someone close to us. When we are elderly, most of us have had many and will have even more.

The person facing their own mortality goes through a spectrum of emotions -- from rage to grief to using intellectual thought to numb out. I can't know what that is like. I can only listen with as much compassion as I am capable of. I can also -- and I must if I am to listen in that manner -- be aware of my own rage, my own grief, my own compulsion to offer solutions.

I remember something my therapist told me when one of my children was going through a particularly difficult time and so, so badly wanted to make things better for her. Ask yourself: Am I telling her something she already knows? Is this something she can figure out for herself? Because if the answer is yes, then the purpose of the question is not to help her by supplying information or opinions not otherwise available to her. It is to ease my own burden of anxiety by adding to hers.

I must remember that when a dying friend trusts me with intense emotions, they are not asking for me to solve a problem. They are asking me to listen. To be with them. To ease the loneliness and fear to whatever extend my presence can. To be present with them in this very moment.

Sometimes about the most useful thing I can do is pass the Kleenex.

For both of us.