I was alone for the first time since
my fiancé Jeff had been diagnosed with leukemia, exactly
seven months ago. I’d often had minutes alone—in the
hospital only a day ago, for example, I cried alone by a pay phone,
because there was not always someone I could cry to, especially
when my closest love was the one I was crying about. Jeff had been
discussing with his doctor a life-threatening, experimental procedure
called a bone marrow transplant, which was soon to be done on him,
and I had excused myself to go the bathroom, but I didn’t
make it all the way. I stopped halfway down the hall, near the pay
phones, where I sat in a chair, folded my arms on top of an aluminum
shelf that held the Yellow Pages, and dropped my head down on my
arms and cried. No one seemed alarmed. I’m sure in the oncology
ward many people are seen alone crying with their heads in their
Other than for brief overwrought moments like this one, I had not been alone. For the first forty days of Jeff’s illness, I lived in a cot beside his hospital bed. Nurses, nurses’ aides, orderlies, social workers, and the occasional doctor crowded the days. And once Jeff could leave the hospital (only temporarily, for he would be an inpatient another six times over the next seven months), our situation didn’t change much. We moved into a two-room apartment belonging to friends, and with the four of us occupying a 500-square-foot space, aloneness was never an option. We each had many relations, who often came by for meals, music, and conversation, and sometimes to sleep on the couch. Walking from Jeff’s bed to the refrigerator for milk, I had to pick my way past two IV poles (which were connected to Jeff by tubes, of course), several hazardous waste bins, and another several boxes of medical supplies, and then, outside our bedroom door, I had to move equally as carefully among various sleeping people, plus Chapin, the man of the household, who would most likely be typing on a laptop next to a bowl of cereal at the table, and Danielle, Chapin’s girlfriend, who would either be in the bathroom showering for work or pouring coffee for herself in the kitchenette with a towel wrapped around her head.
I am certainly not complaining. Jeff and I loved feeling the healthy lives of our hosts pressed so close to our own. It felt like shelter. The experience was not unlike living a five-month-long slumber party. My point is that for more than half a year, in the manic activity of caring for Jeff, I had not once run into myself by myself to stop and ask, So how are you?
I got my chance when a friend of a friend invited me to housesit her nine-room Victorian for a month while she was on vacation. The day I was scheduled to move Jeff and myself into her house, Jeff developed a fever and had to go to the hospital. We waited five hours in the emergency room, until he was transferred to the familiar oncology ward, and there, nurses let us know he might have to stay for a couple weeks. They attached him to two IV drips, antibiotics and saline. Bald, pale, thin as a prisoner, dressed in blue, Jeff looked like a ghost, a dream, like something that wouldn’t last the night. I rubbed his feet; he closed his eyes and dozed. Another few hours passed until Jeff patted my hand: “Don’t you have to move to Jean’s house tonight?”
“I don’t want to go,” I said, tearing.
“I’ll be fine,” Jeff winked at me; I shuddered. It spooked me that even when he was aching with a fever and I could almost see him disappearing, flesh and muscle dissolving off him like soap bubbles in cold air, even then, Jeff maintained all attributes of his personality, from cleverness to humor to passion.
“Kiss me before you go,” Jeff said, and I did, on his forehead, which was hot as a rock in sun.
Moving took only a few hours—a few bags of clothes, half a dozen boxes of books and medical supplies. The two IV poles I stuck through the sunroof of the car, and then, suddenly, by nine or ten at night, I was—strangely, marvelously—alone. I walked from room to room in the dark, touching furniture, opening windows, plucking one-two-three leaves from various houseplants. I brought the leaves to my lips and said, “Jeff,” still walking until I reached the back stairs. The place smelled empty—of wooden floors and woolen curtains and not much else. Upstairs, I lay across the guest bed diagonally, my arms stretched straight out from my sides. So much space—it was a queen-sized bed—and I stretched my legs out to the edges of it. With Jeff, I had to lie in bed in a straight line, still as a stick, wary of disturbing him because he slept so fitfully. When he was on IV antibiotics, I had to get up through the night every four hours to pull a new bag from the refrigerator, pop the top, and hook the tubing to him. But for this night I had no alarm clock and no reason to check my movements. I rolled over a dozen times. I threw the pillows off the bed. I sighed like a horse when its girth gets loosened.
Of course, all this relief, this sensational release, was bitter, too. Worse even—it felt ominous. Because whenever I was not with Jeff, I became completely convinced that I would not ever see him alive again, that some unpredictable disaster would happen at the hospital…a phone call…I could not bear where my imagination would take me. On that big bed, breathing into the exquisite wood-paneled emptiness, I tried to bring Jeff into the room with me, so my mind would not fall into fear. I tried to recall the sensation of his arms encircling me, that wonderful hoop of muscled strength that used to be thick and tough as tires, and his breath, too, I tried to imagine, hot as an engine in my ear.
But my imagination would not, or could not, do this for me. Somewhere in my mind—or really, it felt as if somewhere in my body—I became twelve or thirteen again, returning to a time when I felt very separate from what happened around me, when I was more fully consumed by my own feelings and ideas about the world, and even more essentially, when I did not yet feel responsible for the health and well-being of family or friends. That sweet age—which is, of course, emotionally wrecking and spiritually ravaging, for childhood is always treacherous—was when I learned to love being alone. Solitude, a physical distance from others, enabled me to realize I was separate from them, and I liked this separation. It assured me that other people’s destinies did not necessarily have to dictate the formation of my own. Katherine Anne Porter describes the necessity of solitude in her story “Holiday”:
I loved that silence which means freedom from the constant pressure of other minds and other opinions and other feelings, that freedom to fold up in quiet and go back to my own center, to find out again, for it is always a rediscovery, what kind of creature it is that rules me finally, makes all the decisions no matter who thinks they make them, even I; who little by little takes everything away except the one thing I cannot live without, and who will one day say, “Now I am all you have left—take me.”
While lying on that queen-sized bed in that huge and empty house,
I remembered that I used to lie on a twin-sized mattress on a floor
in my childhood room listening to my parents light into each other
downstairs with one argument after another, but there were trees
outside my window—I could see them crossing their arms beyond
the glass—and I knew I would survive whatever it was that
was making my parents so unhappy. I knew that my parents’
feelings and their opinions and their very existence—and many
other people’s thoughts, and even many aspects of my own life—all
could disappear, and I, a separate being, would still exist. It
was that simple. Trees grew tall and mAGNIficent outside, and so
Now, alone again after such a long time, I felt the same sense of assurance. Which was as awful as it was strengthening, because I did not want to think that Jeff could die while my body and mind were alive. I did not want to admit that I wanted to be alive, even if Jeff died. These truths spoiled my fantasy that love was the foundation of survival, that the heart does not beat without its loved ones around to inspire its whump-thump rhythms. Poet Czeslaw Milosz has written that “the heart does not die when you think it should,” and to me, the idea of even living after Jeff died felt dishonorable. To survive, to move on, to hunger for love and sensation while the ghosts of those who did not make it so far moan in one’s long-past footprints—oh, no. Oh, no. I did not want to admit that I was this greedy for life.
“Jeff,” I called out loud to the empty room. I listened to the quiet, noticing trees outside the windows, bowing angles of bare branches under the sheltered glow of street lamps. I prayed for Jeff to make it peacefully through the night. At some point, with my clothes still on, I fell asleep.
* * *
Most mornings that Jeff was in the hospital, I woke at five to
catch the first train downtown to sit with him. Or I showered and
dressed for my temporary job as a substitute teacher at the local
high school. On waking in the new, empty house, however, all I did
was lie in bed—still diagonally—until the day grew light
and full of blue air. The world still existed, I noticed, staring
out the window. It was, in fact, alarmingly beautiful. Even the
garbage truck grumbling up the street was full of color—blue,
green, and yellow, with a hundred corners of patchwork quilt flapping
red, plum, and brown out its backside. The two men hanging off the
back of the truck were lean and tall as telephone poles. They made
noises like crows—“Haya—Caw—Aghh!”
I wondered if either of them was in love, if either had ever lost
a fiancé, if they knew death. I listened to them work their
way up the street; I listened to myself wonder about them. I’d
forgotten how delicious lying in bed was. In the shadows of Jeff’s
pale blue figure, I forgot that I used to relish being alone.
Aloneness is the skeleton of every writer. Whether the writer must create that sense of isolation within herself, or whether she can afford a life that creates aloneness for her, a solitary mind is what allows the writer to think and write and therefore live as an individual. If she does not want to be merely another mouthpiece for convention, the writer needs to know—were all her supports to fall, from her home base to her national heritage—where would she stand, what would her passions support?
When Jeff first got sick, we had to leave the remains of our half-built timber-frame cabin in Vermont and most of our belongings under a blue plastic tarp, I had quit my job teaching at college there, we’d been told that we could not have children naturally and that Jeff’s chances for long-term survival (hospitalspeak for one to five years) were 30 to 50 percent. In less than forty-eight hours, we had lost home, land, work, family, and health and found ourselves, instead, stuck in a hospital room in Boston for twelve, possibly many, many more months. What was left of our lives? A writer would answer, All that matters.
I, however, had forgotten what mattered. Over the wearying six months of caring for Jeff while he suffered from cancer and chemotherapy and infections and reactions to this or that drug, I had begun to long for symbols of solidity—a man who could stand on his own, a house of my own, a stable income—all that one craves when one’s insides are weak and so need external props. Only after I had the chance to lie still and think in my friend’s friend’s queen-sized bed for an uninterrupted hour of the morning did I realize, with some shock, that loving and caring for Jeff, that suffering and surviving crises, that helping and working for any person or group of people was just not enough to keep me feeling fulfilled, happy, or even fully alive. What I need, on a daily basis, more than anything else, is the experience of writing.
Writing confirms for me that I am more than what my current circumstances would have me be. Specifically, it assures me that my spirit is as much a factor in the outcome of events as the weather, cancer, the economy, et cetera, and even more importantly, it lets me experience that there is more to me, and my life, than that outcome. That “more” is what matters: it was what Jeff and I still had despite our stripped, diseased, and disastrous state.
No few words can define this “more,” but well-written stories evoke it. Susan Dodd’s novel The Mourners’ Bench, about Leandra and her old lover Wim, who dies in her home from a brain tumor, or James Baldwin’s If Beale Street Could Talk, a romance between two eighteen-year-old lovers, one of whom is unjustly locked away in prison, possibly for life, are two examples out of hundreds of other successful novels that depict characters enduring wretched, almost insufferable circumstances. What keeps these characters struggling through their suffering, rather than giving into it—by going mad, becoming mean and vindictive, or dying—is the grace, the redemption, the love that make up the most essential aspect of human life. “Love is no earthly power anyhow,” Susan Dodd’s character Leandra thinks to herself. “It’s more like a surrender to a body’s pure helplessness. Love is giving up any least little power you ever once had.” Her point, of course, is that giving up such power is what provides another kind of power, the one she has chosen to live by.
Not all people need, as I do, hours of thinking, reading, and writing alone every day to feel independent and therefore unthreatened by the circumstances around them. I used to watch other women my age on the subway in the morning going to work and assumed they liked themselves, just as they were, on that subway. They combed through their hair with their fingers; they read best-sellers with care. They owned leather briefcases, and when the train arrived at their stop, they unsnapped these cases and slipped their book neatly inside before standing up to put their gloves on and step off to work.
I, too, have read on the subway wearing a skirt and blouse, then walked off smartly to work in nonprofit offices that promised to alleviate hunger or poverty or sexism, but I never felt comfortable doing so. I then tried working outside of offices as if it were the rooms themselves that cramped me—selling produce at farmers’ markets, weeding and harvesting on the farms themselves, teaching in schools and juvenile jails—but no, whatever I did, if the activity lasted too long, if it did not afford me time and energy enough to reflect on and write about my actions, to analyze the behaviors and characters of those around me, and to tap into parts of myself that were not “useful” for my current job, then, eventually, I left it. And I used the time between old and new jobs to write.
And what did I write? Why was writing so necessary to my survival? My answers shift and transform over time, but when I first began to write regularly and seriously, around age twelve, I wrote to refine, expand, and strengthen my understanding of myself and the world that surrounded me. I needed to write—“The trees outside my window look fine and strong. That way I know I’ll be fine and strong when I’m growing on my own out there, too”—in order for me to actually know that this statement was true. Having thoughts pass through my mind was not enough. I had to mark them down, then re-read them, in order to believe in them.
I was not just trying to understand how things were in their present form. I also sought to understand how human lives and the natural world took their particular shapes and turns. The more I wrote—and read, of course—the more I realized that every aspect of the physical world, and every nuance of the emotional world, was as it was because of a particular history that made it so. Nothing existed without a story that birthed it—and continued to create and sustain it—and this is why John said that the word came before the world. Because without the word equality, could our democracy unfold, and unfold again, opening to civil rights, the Fair Housing Act, free preschool care? Without the word marriage, could I unfold, and unfold again, in the relentless work of caring for Jeff and dissolving parts of myself into our partnership? Words led people into lives they might not have gotten to on their own, and this knowledge excited me, thrilled me, captivated me so fully that I wanted to do nothing but run with it—by writing and by reading.
So I wrote, and still write, because I need to know why things are as they are, and why they go as they go. And this knowledge is not impossible for human minds to fathom. In fiction, poetry, and exposition, writers have recounted and foreseen most of the events and trends of our time. Through all my growing-up years—the terror of the U.S. bombing Libya, the exponential growth of homelessness, my own hormones driving me to sneak out of my parents’ house into boys’ rooms, sometimes their beds—through all this, books, with their careful wisdom and their attentiveness to truth, sustained me. And there were so many tremendous, wisdom-filled, right-on books to read! James Baldwin’s The Fire Next Time, Virginia Woolf’s Three Guineas, D.H. Lawrence’s Sons and Lovers—these books clarified for me the most overwhelming of subjects—racism, war, sexual love. The writers identified the origins of current trends, ideas, and behaviors, and by tracing their personal story lines, they articulated why things were as they were, and so I believed—at least some of the time—that every experience could be described and explained, no matter how confusing, crazy, and complex it seemed, if I could just focus enough, if I could be like the writers I admired. I was a novice for so long, unable to put words together honestly for so long, but whenever I tired of trying, I’d watch the masters do what I wanted to do, and then I’d try again.
Having moved so often, and still living in the midst of cancer emergencies, I’ve lost the couple dozen journals I filled since I was twelve, but the journal I’ve currently been filling reflects this process of reading, writing, learning, and copying, quite clearly:
Our vehicle was an exhausted specimen of something called a spring wagon, who knows why? There were no springs, and the shallow enclosed platform at the back, suitable for carrying various plunder, was worn away until it barely reached midway of the back wheels, one side of it steadily scraping the iron tire. The wheels themselves spun not dully around and around in the way of common wheels, but elliptically, being loosened at the hubs, so that we proceeded with a drunken, hilarious swagger, like the rolling motion of a small boat on a choppy sea. (Katherine Anne Porter)
The trailer’s walls were thin as a teaspoon turned sideways. They smelled with all the life that over the last fifty years had squeezed into them, prospered—swarming, buzzing, feeding, slithering, birthing, dying, and generating odors of moldy hay, turds, and strangely, something like burnt milk. One winter day, when repairing a wall a late-night visitor had accidentally put his hand through, I found snakeskin inside the half-inch-thick fiberglass insulation. And bits of hornet nests, the brown dust of disintegrated leaves, and dead black beetle bodies.
It wasn’t a bad home, though. It was Jeff’s and my first home in Vermont, beginning March 1998. The owners of the land we purchased let us have the abandoned trailer for free, and we cleaned it out and installed inside it an ice fishing stove, about 12” long and 6” high. We had to saw wood endlessly, to make pieces small enough to fit through the tiny stove door. We got washing water from holes we hacked through the ice of the river, and we got drinking water from a tap at Vermont Spring for 25 cents a gallon. We were content because we spent hours of these cold, hard-working days talking about the beautiful-but-modest timber frame cabin we would build as soon as the snow on the land melted, and the mud dried, and the air warmed.
Now, we’re in a hospital room full of lights that cannot be turned off and machinery that hums and beeps without pause. There is no night here, no privacy, no quiet. We’re as far from home and what we knew then as “life” as a polar bear cub captured and sold to a circus in Miami. In dreams I return to Jeff’s and my trailer, and gazing out its steamed windows, I see our whole world—or, what we thought of as the world—as insubstantial as heat waves rising through the frosty air, dissipating, dissolving, just plain going. All the forms of what I knew then to call life—human bodies and trees and snakes and family households—all are just temporal bursts of heat, slowly losing their shape and warmth and very being, drifting off, thinner than smoke. It is hard to admit that in this hospital where neighbors die as often as snow falls in Vermont, and where hour after hour Jeff cries from pain, his head in his hands, his scalp as red as if it had been scalded in a pan, that we are still inside this word called “life.” (January 1999)
A great mutual embrace is always happening
between the eternal and what dies,
between essence and accident. (Rumi)
I began copying passages and writing my own brief bits while in
school. Escaped from adolescence, working in the world, I needed
the discipline more than ever. As a teacher, a social worker, an
administrator—whatever job I had at the time—I felt
a tremendous responsibility to other people. Not just to my boss
or clients or students—but to “people” everywhere.
I hoped to discover, in James Baldwin’s words, the “underlying
principles” that guided us, in our thinking and in our actions,
so I might distinguish right from wrong more clearly. When working
at a lock-up correctional center for teenage boys, for example,
I read James Baldwin’s “Letter to My Nephew,”
about growing up black in Harlem; I read Robert Coles’s The
Privileged Ones, about children raised in the wealthiest American
families; and I thumbed through Paul Goodman’s Growing
Up Absurd, which drew parallels between the “youthful
dissenter” and the “youthful conformist,” all
in an effort to understand more of what I was doing for and to the
boys I was teaching at that time. Even though, obviously, no simple
answers were available, I believed that discovering more of the
myriad truths around me would make the difference between my doing
valuable work and merely blundering my way through these boys’
lives. I believed I could be helpful rather than hurtful, for writers
had demonstrated for me the essential, meditative practice of observation,
analysis, and articulation, and I knew that if I practiced it enough,
their wisdom would be mine. I knew that if I could understand “life,”
if I could understand myself—I mean, if I could fathom my
beginnings as well as my present and so see the history that made
me—then I could perhaps affect, in a responsible way, that
current storm of stories around me.
But all this sounds rhetorical and dry, and I need to add, too, that writing and reading compelled me also because of their recognition of the miraculous and the mysterious. The exhilarating part of reading and writing, for me, is discovering what cannot be written, only reached toward. Albert Einstein describes it this way:
The most beautiful and deepest experience a man can have is the sense of the mysterious.…To sense that behind anything that can be experienced there is something that our mind cannot grasp and whose beauty and sublimity reaches us only indirectly and as a feeble reflection, this is religiousness. In this sense I am religious. To me it suffices to wonder at these secrets and to attempt humbly to grasp with my mind a mere image of the lofty structure of all that there is.
My favorite writers did not shy away from this acknowledgement of the divine. They told stories of a world that was not entirely under human control, and of people full of secrets that the people themselves did not even know. Reading such stories, I gained a sense of luck, of spirit—I was reminded that very little of the world, and even very little of one’s own soul, is under human control. Larger forces than humanity are out there, and the best writers did not shy away from referring to them.
* * *
When Jeff was first diagnosed with leukemia, I forgot about the
analytical, spiritual, and steadying resources I had in reading
and writing. I didn’t think; I didn’t muse; I certainly
didn’t write. There just wasn’t time. I knew I was breathing
only when Jeff and I breathed together at the same time. Holding
hands, we looked into each other’s eyes and inhaled together,
then exhaled, inhaled-exhaled, inhaled-exhaled. We breathed like
that for hours. The first couple of days we were in the hospital,
I slept only in quarter-hour intervals. I let go of Jeff’s
hand to go to the bathroom and once for several hours on the third
day when he had surgery to insert his double Hickman line (a permanent
IV inserted into his chest, hooked straight into his jugular). After
about a week, I began to walk by the river with a friend from seven
to eight every morning, but whenever I wasn’t with Jeff, I
felt I was nowhere. Jeff’s heart was my own, and I didn’t
know my own was beating till his hand was in my hand and I could
feel his pulse, the steady, undying rhythm of it.
Eventually, the intensity of our connection was broken in several ways, and I still feel a fragile snapping inside of me when I think back on the change. First, our parents arrived, and four different agendas and needs came with them. No one knew what to do, but everyone wanted to do something. For two days, the four parents talked, and after that, they argued. Meanwhile, Jeff maintained the composure of a stone Buddha.
“What do you want?” I whispered one night when the parents went off to conference about doctors and hospitals and to frustrate each other some more.
“I want a long life with you,” Jeff answered, and I wept, my face against his bare, non-IV’ed arm.
Our connection was further undermined by a new hospital rule: no visitors could stay overnight. A nurse, a social worker, and another nurse told me this; they might as well have given the order in Arabic. I was so astounded at the thought of not spending my nights with Jeff that I pretended to myself I didn’t hear them.
On Christmas Eve, the night Jeff had just taken his most dangerously concentrated dose of chemo to date, his nurse told me I had to go. My mouth dropped open as if for a dentist.
“It’s Christmas,” I said.
“How many people have told you you’re not allowed here?” the nurse went on, as if she were arguing over the price of a tomato.
“It’s Christmas,” I said again.
“Me, the social worker…”
“The doctor said I could stay. When we toured the hospital, we asked, and he said I could stay.”
“You need to leave. Visiting hours end at ten.”
I felt I’d been slapped. My sensible self was sure this was a mistake. I’d lived with Jeff in the hospital for forty days, been with him for all his ensuing day-treatments, and, of course, I’d continue to be with him that night and all other nights. I stayed in the chair beside Jeff. The nurse stood over me and yelled.
“Baby,” Jeff said. He was embarrassed. I started to cry. In a panic, I paged the doctor who had promised I could stay with Jeff, and the doctor brushed me off with good humor.
“Barring Jeff jumping out a window,” he said, “he’ll be there for you in the morning.”
A nurse manager walked in later, and I was escorted out of the room.
Jeff and I called each other throughout the night, and I was back by his side at six (I was only an hour subway ride away), but our not sleeping in the same room together changed something. As the days ticked by, the design grew clear: I was a visitor, he was a patient. We shared no home. Secrets knitted between us. Jeff went down his tunnel alone.
What happened as a result of this split between us was that, for the first time in my life, I experienced the disaster of loneliness. It was awful, a terrible sickness, and I could not get away from it. I began to stock groceries from 11:00 p.m. to 7:00 a.m. in a supermarket, the exact hours I was not allowed in Jeff’s room, and yet even with this mind- and body-numbing exercise, away from Jeff, I felt I was doing nothing other than practicing for his death. “This is what it will be like,” I recited to myself, lifting boxes, emptying them, stomping on them and putting the collapsed cardboard in dumpsters, then cleaning the employee bathroom and shopping for food at the end of my shift—food that I would prepare alone and eat alone. All I could think about, constantly, when away from Jeff, was what it would be like to be away from him forever. “It’s good to have some time off,” my mom said to me when I told her I was no longer allowed to spend nights at the hospital, but this time alone did not strengthen me; it made me insufferably sad, and it even affected my time with Jeff. I saw him as someone I would have to leave in a matter of hours and as someone who was threatening to leave me for a lifetime. Jeff’s and my flight together felt over. We were moving on our own separate roads, and this separation—my aloneness—terrified me.
What saved me was that I began writing again. Scribbled journal notes, desperate letters, fantastic fable-like stories—I began with short stretches, as one would raise her arms over her head to get a crick out of her neck. For the first two weeks in the nine-room empty house, Jeff stayed in the hospital, and every morning before catching the subway downtown, and every night upon coming home, I wrote. I set up my word processor in a small room in the back of the house. Its one window faced east and lit up brilliantly every dawn. Sometimes I slept there, on the floor, and woke up to resume writing with the oncoming light.
Poet Mark Doty writes that when one must confront for many months the possible death of one’s lover, all the vastness of one’s world squeezes down into a single point of acute, hardly endurable grief. Doty was right—I was a tiny, squeezed up, pea-sized point of grief, and the only way I could expand beyond it was to read and write my way into worlds larger than my own emotions and different from the medical industry and its oppressively technical vision. After banging out a battery of angry letters to the hospital social worker and five inflammatory accounts of the specifics of Jeff’s cancer treatments, eventually, I was able to slow down and write two meditative essays about Jeff as a human being and not only as a victim, a short story about a 24-year-old woman suffering from chronic arthritis (which helped me to experience a few degrees of Jeff’s immobilization and deterioration), and this essay. I knew I needed to muse over questions about partnership and writing, primarily: Could the writer’s “I,” that roving, whimsical, disloyal, analytical Visionary, exist in one? Could it commit and still live, vibrantly?
For I needed vibrancy to return to my world and sensibility. By vibrancy, I mean awareness of the magic and mystery of life. I had been reduced to a single point of intention for so long that I had lost sense of anything but Jeff and his fight for his life. The entire world might as well have been dying from leukemia, for all I was and felt—until I entered that big house and began spending hours in the eastern-lit writing room. There, I read words of men and women who understood the irrepressible powers of transformation, and who took time enough to write and create stories from that wellspring. Fiction writer Rick Bass describes the experience of encountering the mystery:
There is a place, a sanctuary you go to, in writing fiction, or, I suppose, poetry, that is in another world. You are not in control—and upon emerging from it, the writing of and the inhabiting of that place, you feel new energy, new understanding. You’ve touched mystery....That’s what I like to chase, or move towards: that feeling, that place. It does try to escape.
I really fell in love with my aloneness during those two weeks
of writing. I fell in love with my ability to write when and for
how long I wanted. As selfish as it sounds, I was thrilled not to
be cleaning and cooking and nursing Jeff all day and throughout
the night. This man I loved, my best friend, my soul mate, was in
a hospital suffering extreme physical pain and loneliness and fear—and
I was alone, and I was relishing the aloneness, and I even wondered—in
my darkest, most secret self—was there resentment in me toward
Jeff for his having kept me for so long away from my other best
The truth is, there had been a tension between my life with Jeff and my life as a writer almost for the whole of our relationship. In fact, I could date the rift back two and a half years ago, when Jeff and I first started dating and to celebrate, Jeff bought me a futon, which he had delivered to my room.
Now, my “room” at the time was small, but by keeping it relatively empty I was able to enjoy a feeling of space. A royal blue carpet covered the floor, and before the window facing east, I had propped a round glass tabletop, about thirty inches in diameter, on top of a stack of several milk crates which were full of books. A friend had given me an old bar stool which was the exact height I needed in order to type comfortably on the glass table. Other than clothes in the closet and one blanket for sleeping on and another blanket for sleeping under (both of which I rolled up in a corner upon waking), the room was empty.
The futon Jeff ordered was huge. Two equally huge men brought it in, stomping into my room with boots the size of furnaces, tracking soot in streaks over my carpet. I was appalled. My chin grazed my own bare feet as I watched my room transformed from a spacious, ascetic writing room to just one more person’s cramped pad.
The men left. I did not thank them, did not shake their hands, did not exclaim, as a good girlfriend might, Well, what a surprise, I can’t believe he’d do such a thing, blah blah blah. I stood there stone still. Alone, I glared at that big, big thing in my room. The wide white mattress looked like a washed-up whale’s carcass. It even smelled bad. I could have cried, but instead, I went for a walk. On the walk, I decided that most definitely the futon would have to go. I would explain to Jeff that it just “disappeared.” One of my housemates would help me brainstorm a tactful way of doing this, I was sure.
When I returned to my apartment, Jeff was there with seven grins on his face and more up his sleeves. “Merry Christmas,” he said.
“It’s June,” I said.
“Do you like it?”
I talked with Jeff about this incident about a year ago, and he admitted to me that he knew all along that he had crossed the river Styx with his “gift.” But he also knew that if he was going to spend any nights in my apartment, he was going to need something other than a Salvation Army blanket to lie on. “And babe,” Jeff said during this reflective conversation, “you were a little rigid. I needed to know you could move ideas in your head, you know, and toss a few.” Another seven grins—and, this time, some of them were mine. Jeff was right. I was a little rigid.
And so for the next two and a half years, I let Jeff show me about the looseness, the fluidity of love. The futon stayed in my room and within a week, I loved it. What I really loved was lying with Jeff on it. I’d always risen with the dawn to write before work with religious discipline, but on that big futon with Jeff, on days we didn’t have to go to work, I loved to lounge. I’d smooth my hands over Jeff’s skin, slowly getting to know him in his body and in his mind through our dreamy talk. I’d had lots of boyfriends before Jeff—I was twenty-six when Jeff and I met—but I wasn’t absorbed by any of them. I certainly never imagined a united life with any of them. With Jeff, I was in love. I mean, I was fascinated, enchanted, utterly enamored of this soul that had come into my life. We were always together, discovering each other and various parts of ourselves through each other. I didn’t need to write. All my thinking and dreaming was happening with this wonderfully sensual man: so why would I sit alone with a dictionary and blank paper?
Of course, I didn’t stop writing entirely, I just didn’t concentrate on it. My mind was on Jeff. Within six months of meeting, we had committed ourselves to each other, and we began driving around the country looking for land to buy on which we could build a home together. West Virginia, North Carolina, Maryland, Washington State, Wyoming, New Hampshire, Vermont—we scouted out deals everywhere, camping along the way by rivers and lakes and mountains. In July 1997 we took a three-week home-building course together, and while all this adventuring was going on, we both were also racking up working hours in order to each put a thousand dollars a month into the bank.
So I didn’t write much. And I published nothing. I’d published half a dozen pieces before I’d met Jeff—and since then, nothing. But—strange timing—I only began to feel the pinch of loss during the exact year that Jeff and I finally found and purchased our ideal lot of land and began to build our dream house. It was 1998, I was twenty-eight and Jeff was twenty-nine, and together we were preparing to build a timber-frame cabin on the south side of a snow-covered hill in Vermont with a brook trilling under ice a few hundred feet away—and all I could feel was mean. I felt like an animal dumped out the back of a car: What had happened? Who was I? How did I end up on this hill? The only way I knew to answer these kinds of questions was to write, but it was twenty degrees in the mornings, we were living in a tent, I had no desk, no electrical power, no steady heat, no lamp, hardly any free time—how was I going to write in this place?
Jeff and I never had time to work through my change of mood: he got sick before we broached it. And it wasn’t an instant or dramatic change. I just stopped laughing so much. I became more critical, less enthusiastic. Summer melted the snow, the nights became warm, and Jeff and I cleared different parts of our land for gardens, for corn, for an orchard, for our house. Jeff played his guitar every evening, and I walked down to the river and watched fireflies light up the dark undersides of spruce trees and hemlock. Sometimes I took off my clothes and waded into the water, picking up and dropping small stones so that they splashed up upon my body and face feeling like heavy rain. I just could not figure out why I felt as listless as if I were watching TV.
Jeff didn’t know what was wrong with me either. While waiting for a cement contractor to pour our basement foundation, Jeff built us an eight-foot-by-seven-foot summer sleeping shed with windows opening to the east and west, and the first words I said were, “That foundation’s going to wash away in the next rainstorm.” Finally, in August, I was hired at the local college to teach writing, and I threw myself into the job totally and exclusively. I planned to start writing there, in the library, which was open until midnight six days a week, as soon as I got ahead in the work. “I guess I’m building the house now,” Jeff said one night when I returned to the land after ten at night.
Only in hindsight, through this writing, can I see these patterns of Jeff’s and my time together. I’m amazed at how many days we let pass so unsatisfactorily, that we accepted any days at all that were so empty of love. When I’m not writing, I see now, I just endure, and then I slowly resign myself to the conditions I am enduring. I even become them, as one might become racist if raised in a bigoted community. So I became more sad, and more lost, without the practice that would allow me to examine my situation, judge it, then act to repeat or change it.
And I lost the vibrancy. Writing is vision, music, an act of opening to knowledge vaster than one’s own. When a writer fully succeeds at stepping into her story, she becomes more than her own experience, more than her own identity. She becomes a kind of primordial soup in which the event of which she writes is reborn. The writer is then every creature of her story, not just herself: really, she is the entire environment in which the story happens. And in this process of creation, the writer learns—no, the writer experiences—the way of things, how they live and die, how they self-destruct, and how they prosper. This is how the writer gains wisdom.
But it is extremely difficult to become this soup pot of creation. It takes tremendous concentration and often long terms of isolation. It does try to escape—and if the writer does not have the time she needs to chase after it, and the isolation she needs to become it, then the writer is no longer a writer. She is a very grumpy, unemployed woman who, like so many people unhappy with their lives, is locked up in her own head, hearing only her own old monologues, and not the whole story.
During the summer Jeff and I were trying to build our cabin, I was in this locked-up space. I was not writing and therefore I was stuck—blind and deaf to all but the most repetitive feelings. Once, through conversation, I caught a very faint glimpse of what might be going on, but without time to chase down the twilit trail of the thought, I remained ignorant of specifics.
The conversation was with my elder cousin, in Jaffrey, New Hampshire, a week before Jeff showed symptoms of some kind of sickness. My cousin’s family had a house in Jaffrey, and my parents, sister, aunt, and uncle were visiting. I drove over from Vermont for a weekend to join in on the family reunion, and I remember saying to Cousin Eddy while we were both alone in the kitchen before dinner that I was tired but looking ahead. “I’m hoping we made it through the hard part. I love my job. It’s got to get easier.” I remember Cousin Eddy’s expression: he’s at least sixty, a judge, wrinkled, wizened, but with the most generous sense of humor of anyone I know. He was looking at me very sadly, though, and I couldn’t figure out why. “I mean,” I went on, “we haven’t had running water, or a refrigerator, and there I am, bathing in the brook before putting on a business suit for work…” Cousin Eddy laughed with me, but now I felt sad, even uneasy. What did I not know?
I went to bed early that night in New Hampshire. I turned the bedside lamp on and opened my journal, as usual. I’d written in a journal almost every day throughout the summer, but journal writing is a completely different animal from story or essay writing. Journal writing is a pouring forth of emotion, memory, dream, sensation. In contrast, essays and stories require deep thinking, reflection, and a hell of a lot of revision. Their purpose is to uncover the layers of what journal writing only describes. My journal was full of a blur of feelings that had passed through me, but I had yet to understand why those feelings were there and how they might be affecting and shaping my life. “I just want to do a good job at the college,” I wrote in my journal that night in New Hampshire. “I just want this damn house done so I can clean myself and grade papers and maybe even start to write again…” I fell asleep, leaving larger issues—Jeff and his wishes, values about the land, about work, about partnership, about creation—unexplored and out of sight from me.
When I drove back to the land—it was Sunday now, September 6—Jeff had a sore throat. That night, he moved from the sleeping shed to the mobile, where there was a mini-wood stove, but there wasn’t room for both of us to sleep while lying down in there. I slept in the shed, and for the next two days I would work during the day, come home around nine or ten at night (my last class ended at 8:30 p.m. but often ran over), check in with Jeff at the mobile, then walk up to the shed.
Wednesday night, Jeff couldn’t sleep. I remember the smell of the wood stove burning all night long. I considered getting out of my sleeping bag and leaving the shed to keep the stove burning myself, so Jeff could sleep, but I knew Jeff would say no, he could do it, and it was raining, and I hadn’t slept too well lately either. I think that that was the night I knew “it” wasn’t going to get “easier.” But I wanted my life to smooth out so badly! Or, that’s what I thought I wanted. Really, I know now, if God has a face, I’m sure God looked at me that Wednesday night as Cousin Eddy had a few days earlier—with sadness—because “it” never gets “easier.” What I needed was not a lighter load: I needed energy and intention to dive into life deeply again. And that I could get only through writing.
And, of course, through love. And love, not writing, was what woke me up. On Thursday morning, Jeff was coughing and shivering and we decided to go to Boston where Jeff still had an apartment for work (he owned a cafe in Davis Square). Jeff’s insurance ran through Massachusetts, not Vermont, and we thought that he might have strep throat and need antibiotics.
Thursday afternoon and night, Jeff tried to sleep but couldn’t. Friday I took Jeff to a health clinic, and the doctor said, no, Jeff didn’t have strep throat and should wait a few more days to see if he felt better.
Saturday at 8:00 a.m., I paged the clinic’s doctor on-call, and she said to wait.
Saturday at 11:00 a.m., I paged the clinic’s doctor on-call again and said Jeff seemed really sick and would she advise a hospital visit? First, she said no, then she said, “Well, if you’re willing to go down there.” So we went.
Saturday at 3:00 p.m., a very tall and elegant brunette doctor came into the emergency room and asked me to leave her and Jeff alone. Then she said, “Wait—who are you?”
“Jeff’s fiancé,” I answered.
“Well, maybe you should stay,” she said, then, “We’ve done three separate blood tests, and what we’ve found is that you—” she slightly lifted her hand as if to touch Jeff, but did not—“you have leukemia.”
And then a herd of white coats came in, and one man gave Jeff three bright blue capsules—an oral form of chemotherapy—and another took his pulse, another his heart rate. Two residents examined the rash we were told was petekia, a symptom of leukemia, and Jeff and I didn’t have a chance to say anything to each other because so much noise and activity was happening so fast. But we were holding hands, and I swore to God in that emergency room, I will not let go of this hand, this man is my partner, I love him, Oh, God, I swear, I love him, please oh please help me take care of him through this.
Late at night, Jeff and I were still holding hands and had a moment alone. Jeff pulled me close to him, until I sat on his hospital bed, my thigh against his hip. “Listen,” Jeff said, then paused. Jeff wasn’t a speechmaker. He didn’t need words the way I did. He could understand situations without talking about them or writing about them—but now there was something he wanted me to understand. “This is my worst nightmare.” He lifted his chin to the IV tubes attached to him, the walls of the room, and he didn’t have to say any more of what I knew he meant—that all his life, he’d run from walls, that once on the land in Vermont, he had finally walked into his forever-sought dream, to live on green land, in large forests, learning about trees, not rules, and now, here he was, at the edge of the most industrial, technical, and chemical world on the planet—the medical world. “My worst nightmare,” Jeff went on, “but we’re not going to go into this with fear.” Jeff’s voice didn’t crack or tremble. He was enacting what he was asking of me. “We’re going into this knowing I’m coming out.”
I began to cry, for the first time that day, and for the first time in a long, long while. Jeff took my hand and shook it. “No fear, okay?”
I nodded. “I’m not crying because I’m scared,” I said, still crying. “I’m crying because I love you so much.”
Jeff sighed a little then, though what came out was more of a gurgle. He was very, very sick. Along with leukemia, he had an abscess in his throat, which had been filling up with white leukemic cells—called blast cells—and it was difficult for him to suck in and exhale air through the phlegm-filled pipe. We were in for a mighty long haul, but—magically—there was nothing but clarity between us. An onlooker might have seen the love that was pulsing between us, a very giant golden glow. And I knew Jeff could sigh because I was there, because we were together, and more than fear, we had love, we had the assurance that we were together—come what may.
And a lot came. In the first forty days, Jeff lost twenty pounds, his hair fell out, he broke out in rashes all over his body—fevers, surgery, an ambulance ride to a better-equipped hospital. And when Jeff was let out and we moved into that small apartment with friends, Jeff faced going through the same trial four more times over the next seven months, and meanwhile we had all these rules to follow: no sunlight, no sex, no kissing, no fruits or vegetables, no digging in dirt, no being near construction, no playing with kids, the bathroom and kitchen must be cleaned with anti-bacterial sprays daily, all sheets and clothes laundered daily, the whole apartment vacuumed twice a week, doctor and clinic visits three or four times a week, four to eight hours each—We had rules, we had trials. But our love was as strong as in those first days after we met, and we lounged on that big futon till late morning. We knew why we were where we were—because we needed Jeff’s cancer cured—and we knew where we were going—back to the land in Vermont to build a home.
So, not until I moved into the nine-room house while Jeff was in the hospital, and not until I experienced several nights alone, did I recognize I might be missing something, that I had some other work to do other than taking care of Jeff and earning cash to support us. When I began to write in that east-facing room, and when I realized how I had missed writing, finally I knew I needed to keep writing. I knew not to let what had happened the previous summer happen the next summer. I spoke with Jeff:
“Of course, you need to write,” Jeff said. “You’re a writer.”
“But when you’re alone in that hospital—” I tried.
“I don’t want to see you here till you’ve done your writing.”
When Jeff was finally released from the hospital, we had a few weeks left to live in the big house together. These were important weeks, for they were the last before Jeff’s bone marrow transplant. No design of words can express the terror I felt toward this process. It was no less scary to me than Jeff dying, and I really had no idea how to proceed into it.
I did have writing to do. And between every bit of writing, I read, read, and read. Back onto the laps of the masters. At night, Jeff and I would climb onto that queen-sized bed together, and—no, I was no longer alone in it, but—with our legs pressed close together, or sometimes, with mine stretched over Jeff’s, I could still enter the world of my favorite writers’ works, and the experience was more delicious for the company. Jeff and I read together in bed silently, occasionally interrupting each other to repeat out loud passages that moved us. Jeff read to me from Wendell Berry:
When despair for the world grows in me,
and I wake in the night at the last sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
I see now how crucial the voices of writers were for both of us.
The writers we read were people who endured tragedy and who lived
to help heal the rifts of the world caused by misunderstanding,
greed, confusion, and thoughtless reactionism. Jeff did not write
much, but he read as much, if not more than I, and repeating writers’
voices to each other, Jeff and I healed. We maintained our composure
and stayed attuned to the moments we had and did not drown in what
lay beyond us in the future. We talked together about what we might
do to keep up a tradition of healing on our land—bring kids
with cancer into our home for some fresh air and fun, for example.
And then March 13, a Saturday, arrived, and I had to move Jeff’s and my belongings back into the two-room apartment we shared with friends, and then I had to take Jeff back to the hospital for the transplant. I packed and moved boxes very slowly, like an arthritic. I did not want to say good-bye to that wonderfully cozy, east-facing writing room, and God, I felt 100 percent destroyed when Jeff and I got in my car to go to the hospital. Desperately, I wanted to turn the car around and take Jeff to our land in Vermont and beg him one last time to resume his life with me there. One more degree of extremity and I think I would have kidnapped Jeff. Visions of prisoners of war flitted through my head, all these BMT patients, stick-thin bald beaten people being driven like cattle to the edges of mass graves.
For the BMT, doctors infuse leukemia patients with so much chemo that not only does their blood die, their bone marrow dies. Patients become hollow as a flute. Blow through them, and you’d hear a whistle sound, sharp and mournful, the announcement of their death. Doctors keep the patient’s brain and organs alive with continuous blood transfusions and a host of machines that sound like the entire cast of Star Wars, and then, after twenty-four hours, they infuse the patient with a bag of harvested stem cells that have about a 75 percent chance of growing into new, healthy blood. Then the patient may sit up; he may walk. He may live. He may not get cancer again.
The process of recovering from a BMT can take from four to twenty-four weeks, depending on the kinds of complications that arise—infections, pneumonia, heart failure, kidney failure, seizures, lung tumors. More terrifying than these possibilities is that the leukemia might not stay away; it might come back stronger than before. Jeff has a 40 to 60 percent chance of his leukemia returning.
* * *
And this is where Jeff and I are now: Jeff has had his BMT, and
he has been home with me for three days, sleeping in bed, coming
to the table for meals. Through the grace of yet another friend,
we are at a new house where I have room to write, and so I write,
every morning at dawn. And I read every night until I fall asleep,
still holding the book, my friend, my anchor, a secret reason to
hang around. Twenty to 120 days may pass before Jeff is well enough
to walk outside or eat an orange. Meanwhile, he sleeps and eats
the hot meals I prepare for him, and I marvel that we have come
so far, and wonder, too, how much farther we might still have to
And I can write once again that understanding does bring power. Because for the days that I have been revising this essay, though I have had a few attacks of nausea and sometimes some fatigue, I feel a spaciousness growing inside me. The closet has emptied. No more secrets, for now.
And life is carrying on. We are hoping to return to our land in Vermont sometime this summer, where more stories will be born.
Sarah Silbert has published in A Room of One’s Own, The Georgetown Law Journal Against Poverty, Spectacle, and An Intricate Weave, an anthology. She teaches writing in Vermont and Wyoming and lives in Randolph, Vermont, with her husband-to-be, Jeff Hale. (2000)