deborahjross: (Shield #1)
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?
deborahjross: (crone with wreath)
Because my friend is dying
I went on to the land she loves
            To say Kaddish for my mother,
Under fir trees, through overgrown thistles
Past the echoing barn,
The last holdouts of summer blackberries,
Following a horse trail,
            a goat trail,
            a deer trail,
            a labyrinth carved by the generations: Exodus.

A cricket told me where to rest,
There by the single daisy,
            the Queen Anne’s lace.
Thorns snatched at the fringes of my prayer shawl.
I prevailed.

We do prevail, said the twilight.
We prevail from our ashes,
            in the sea
            in the cedar grove
             on the mount
            on the mountain
            at the wall
            at the wailing of the day.

I traced the Aramaic letters,
            stumbling like a stranger to my own faith.
And then, as if in the beginning,
            Bereshit,
A voice rose up through me,
A song that made itself up as it went.

This memory is all I have of you.
This moment is all we have ever had of one another.
This grief is a verb.
This peace is always, always becoming what it will be.

Deborah J. Ross
17 Tishrei 5774
deborahjross: (Shield #1)
Horse people form extraordinary, loyal, and sometimes contentious communities. The same is true for readers (and writers!) of science fiction and fantasy. (And for martial artists, and musicians, and . . .) When two or more of these interests coincide, the results can be magical.
The second volume of The Seven-Petaled Shield, titled Shannivar, touches many of the areas of passion in my life. A strong woman hero, a martial artist, a horsewoman, her wonderful horses, a love story (me being a romantic at heart), a quest . . . One of the people I’ve shared a love of horses and adventure with is my friend Bonnie, about whom I’ve written in the last few posts.

Bonnie and I became fast friends over folk dancing and wild adventures during our college student days in the 1960s. Later, when she fulfilled her dream of owning horses, she carried me back to my own high school years, when I rode my own horse over the golden hills. When I’d visit, we’d ride together, clean stalls together, talk endlessly about horse temperaments and training, and swap tall tales “in the saddle.”
Read more... )
Much to my delight, Bonnie  began studying tai chi chuan, which I had practiced for 4 or 5 years before being seduced by kung fu (30 years total). During those years, I’d delved into the women sf/f writers martial arts cabal. One of those adventures took place at a women’s martial arts camp, where I took a seminar in tai chi sword. I’d kept the sword even after I switched to kung fu, and earlier this year I brought it up for Bonnie to use in her sword form class.

It was therefore luminously clear to me that the Dedication to Shannivar belonged to Bonnie. Who else would understand the references to gaited horses (Bonnie rode Tennessee Walkers), the strategies of a long distance horse race, or the enchantment of a dance when all elements come together as a glorious whole? The only question was whether she would still be here to see its publication.

For the several years while I worked on revising the trilogy as a whole, all 3 books at once and scheduled for release 6 months apart, her health declined slowly and I was hopeful. And close-mouthed. Then everything changed with her hospitalization and greatly shortened prognosis. Shannivar was due to be released in December, and I feared she wouldn’t make it that long.

I sent off an email to Joshua Starr at DAW, my publisher, and explained my concerns. The book was well into production. I’d proofread the pages and seen both the preliminary cover sketches and the final painting. But the ARCs would not come along for a little while. Josh printed up and bound a copy with a mock up cover (the painting, but not the final design) and mailed it to me out here.

I presented it to my friend. Thank you from both of us to Josh, and Kate and Betsy and everyone at DAW.
Deborah and Bonnie


Bonnie
deborahjross: (Shield #1)
The brochure from hospice inform me that as a dying person’s body winds down, appetite becomes erratic and diminishes. The sense of taste changes so that formerly favorite foods are no longer appealing. The person eats less when they do eat. Finally, many dying people refuse all food. This can be complicated because throughout human cultures, offering food is a way of expressing love. The dying person may continue to eat in order to please a loved one, but in the end the demands of the body prevail.

Besides nourishing our bodies, sometimes past the point of health and into diet-related diseases, food is laden with symbolic meaning. We celebrate with festive meals; we soothe ourselves with favorite treats from our childhood; we give candy to our sweethearts. Even the term “sweetheart” refers to sweetness, a taste, as do “honey” and other endearments. Taste and smell are the most basic, “primitive” senses, so our expressions of care go zing! right into the oldest portions of the brain.

For me, one of the most enjoyable aspects of world-building is creating different cuisines for each culture or social class, ethnic group or family. While it may be true that just about every cuisine has some version of pancake-rolled-around-filling, stew modeled on the canned stuff in American supermarkets shouts “generic fantasy!” Read more... )Just as every family seems to have their own special recipe for spaghetti sauce or meatloaf, you can devise variations on the same dish. Sometimes these variations might reflect notions about what is suitable food for people of different ages, different social status, or even genders (“manly meals” or “kiddy food” or salads-are-for-women). Even within these variations, not everyone has the same taste. Some may be innate (how cilantro tastes is genetically determined), or influenced by personal history (travel, associations with significant events or relationships) and health status.

Which brings me again to caring for a terminally ill friend, in particular providing meals for her. She jokes about taking a trip down the memory lane of the foods she’s enjoyed during her life. Her tastes have become nostalgic, erratic to the point of whimsical, but fleeting. Some of the things she’s asked for are cream of mushroom soup, watermelon, Stouffer’s macaroni and cheese, buttermilk biscuits from scratch (which I do know how to make), hot dogs with sauerkraut, salami, and vanilla ice cream with lemon sorbet for breakfast. No pickles with the ice cream, at least not yet, although she jokes about the food cravings of pregnancy. Life is indeed uncertain, so she eats dessert first.

The food comes with memories, of course. “Do you remember the time we ate this when we were students and…” or “I made this recipe while horse camping on Mt. Hood…” or “my father used to cook this for a special occasion…” I think the same is true for everyone, but the awareness that time is limited, that the number of times you will eat this dish or reminisce over the adventures that once accompanied it are not limitless, adds a special poignancy. As my friend’s appetite wanes, she eats less in amount and frequency. There’s a shift from the fullness of having eaten to the sensory pleasure of eating to the anticipation, the idea of that particular food. If there is a sense of re-visiting the past – comfort and celebration, adventure and sharing – there is also a gradual farewell.
deborahjross: (Shield #1)
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?
Read more... )
(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.
deborahjross: (Shield #1)
Now is the time when Jews around the world prepare for the new year by examining their conduct and “making teshuvah.” Teshuvah means “return,” as in returning to our source, re-turning to our best selves. It’s often practiced by saying, publically and privately, “If in the past year I have done anything to harm or offend you, I am truly sorry and I ask your forgiveness.” (Can you imagine a world in which the leaders of the most powerful nations said that to the peoples of the least powerful?) It is considered a mitzvah to do this. Mitzvah means commandment, but it also means blessing and declaration. We offer ourselves in blessing to one another (and, if you are a theist, to the Eternal) in our willingness to admit our shortcomings and our renewed determination to make the world a better, less broken place (“tikkum olam,” or “repairing the world”).

So I say this to you, who are reading my words: It has never been my intention to harm you but if I have done so, by anything I have said or done, or failed to say or do, I am truly sorry.

My personal focus during this season of renewal is different from what it has been in the past. The world is full of sorrows, as so many traditions point out, sorrows that cannot be mended by human means. There is absolutely nothing I can do to alter the course of my friend’s disease (ovarian cancer).

There is much I can do to ease her final wRead more... )eeks.

I’m awed and astonished by the grace with which my friend is approaching this passage. You can read her story in her own words here. Her two grown children are with her today, as is one of their partners and her wonderful husband. We’ve had lots of storytelling, lots of memories, and not a few laughs. Friends and neighbors have filled their freezer with food, although she tires easily and can't handle too much company. They’ve set me up in the little RV across the yard from the house, and I can see a single cream and peach rose still blooming in the garden.

Oregon is currently doing its water-from-the-sky thing. It's as if the sky is anticipating grief. The barn and pasture are empty, the last horse having gone to live with a trusted friend. The garden, in past years so well tended, still yields a richness of tomatoes and squash and a few late raspberries. The apple and plum trees are bowed under the weight of the fruit, but the blueberry bushes are bare.

Much of what I do is give the family caregivers a break, hug anyone who needs it, rub shoulders and backs, offer food when people are hungry and silence when they’re tired, drive and run errands, but most of all, I listen. I want so badly to make things better – to repair the world of these people I love, to give my friend another decade or three – that it’s easy to forget the biggest gift I can offer is a silent mind and an open heart.
deborahjross: (blue hills)
I've been following [livejournal.com profile] 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.
deborahjross: (Default)
It does not surprise me that the single biggest regret of those who are dying is, "I wish I'd had the courage to live a life true to myself, not the life others expected of me."

Top five regrets of the dying | Life and style | guardian.co.uk

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Deborah J. Ross

May 2017

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