Here is the story that, for many years, I wasn't supposed to tell – the single thing my father asked me not to write about.
On a clear, cold day in January, 1955, my grandfather drove my father to a sanatorium in Plymouth, Wisconsin, where he would remain for the next eighteen months. My father followed the nurse, Miss Monica, to the bed that had been prepared for him, a bed on the ground floor, which was the women's ward. The men's wards spanned the second, third and fourth floors; Miss Monica explained that the youngest of the men were generally housed on top, where there was less chance they might run away. But the fourth floor was over-crowded, and a number of the young men already there were, well, wild. So wild, in fact, that by spring, the two wildest had crawled out the windows, scaled the walls like monkeys, vanished into the trees.
My father was nineteen. It is likely that he contracted the tuberculosis from my grandfather. No doubt my grandfather had gotten it from his cattle, as did so many of the farmers in those days, in that area of the country. The TB settled in their lungs, or in their joints, or in their spines. Absolute bed-rest, along with antibiotics and isolation, was the standard treatment of the day. Under these conditions, the body fought the disease by gradually containing it within a calcified node. At that point, the growth could be surgically removed – in my father's case, more than a year after he'd first been admitted to the san.
The san. My father describes the day he was admitted in the careful, paint-by-numbers tones of a man not used to revealing personal things. It is his gift to me. "A clear day," he repeats. "Clear and cold. January twenty-first, nineteen fifty-five." He is standing in the doorway of my bedroom, halfway in, halfway out. It's early evening, just after supper, and I'm already back in bed, where I've spent most of the day. Lumps the size of frozen peas have buckled my shins, and even the short walk back from the dining room has left every muscle below my knees burning. I'm supposed to be using my crutches, but I can't tolerate the weight on my forearms, which are also inflamed. I lie rigid under ice packs, the bedside lamp turned out.
At twenty-one, I'm on an indefinite medical leave from my senior year at the University of Maine. Sometimes, out of boredom, I poke at the typewriter my mother has placed hopefully on a card table beside the bed. She encourages me to write, to identify the birds that visit the window feeder, to read the dog-eared books she brings from our limited public library. She is looking for that silver lining. She is certain the cup is actually half-full. In fact, I am in constant pain and nobody can say why. Steroids seem to help: injections of cortisone, oral prednisone, but I have to take more and more to get relief. I have lost all reflexes below my waist. I can no longer pick up my feet. My hair is falling out, and I have dropped almost thirty pounds. There have been, of course, the theories: lupus, multiple sclerosis, lead poisoning, psychosomatic illness, Hodgkin's disease, an over-prescription of penicillin during my childhood. There have been, along with each of these theories, their attendant and exhausting diagnostic procedures.
"A clear, cold day," my father says again. When my mother comes into my room after supper, she throws on all the lights, sets up the Scrabble board. But my father stands in the doorway. He does not turn on the light. Halfway in and halfway out, he tells his story, this story, the one I've never heard him talk about before, the one which, someday, when I start to publish books, he will ask me never to write down. It is not exactly a secret. It is simply something not to be discussed. My father is a respected business man, and in this small, German-Luxemburg community, illness and shame go hand-in-hand.
"The writer's only responsibility is to his art," Faulkner wrote. "He will be completely ruthless if he is a good one. He has a dream. It anguishes him so much he must get rid of it. He has no peace until then. Everything goes by the board: home, pride, decency, security, happiness, all to get the book written. If a writer has to rob his own mother, he won't hesitate; the 'Ode to a Grecian Urn' is worth any number of old ladies."
In theory, it costs nothing to agree. Of course, a great writer will always put the demands of art before the restrictions of life - the shushings, the warnings, the inevitable consequences. But put an honored face on Faulkner's "old lady," and a complicated scaffolding springs up before your eyes, one which must be re-negotiated whenever you sit down to write about that particular mother, her particular situation, the thing that has become your intellect's purest fascination – even as it remains her heart's greatest secret, sorrow, shame. Each writer must find a workable balance between the paralysis which results from trying to please everyone, and the very real impact of art upon the very lives which inspire it. For some, this balance is effortless; for others, it's simply not an issue at all. But for others still, particularly those who seed their fiction with kernels of fact, it is an issue which never goes away. And what of those whose writing puts its subjects' lives in physical danger? Reveals the secrets of religious sects or vengeful political regimes?
Faulkner's "ruthlessness" is less symptomatic of talent than of individual character and situation. And it's relevant to note that while many writers, like Faulkner, have written out of pain, drunkenness and rage, there are plenty of others who write, as I do, out of confidence and safety and well-being. I don't write well when I'm unhappy or anxious. I don't write well when my conscience is bothering me. Before my illness, my father was a stranger, and this story was the first, frail bridge between us. The act of putting it into words would have destroyed the very reasons I have wanted to do so: to chart the obvious parallels between his life and my own. To explore the irony of this connection between us after many years of distance. To return to a theme that has characterized so much of my work: how circumstance forges kinship in a way blood never can.
And so I chose to endure Faulkner's anguish, rather than get rid of it. For eleven years, I kept the promise I made to my father, even though not writing about his illness meant not writing freely about my own.
For a long time, I didn't need to worry about such things. I wrote for myself, for pleasure, for companionship and comfort, in the absolute freedom of anonymity. Writing began for me as a side-effect of illness, something to pass the time, the silver lining my mother saw so clearly that, over time, I came to see it as well.
On January 1st, 1988, I made a New Year's resolution to try writing seriously, for two uninterrupted hours three times a week. I was twenty-three years old. That fall, I'd returned to Maine in a motorized wheelchair, completed my coursework in anthropology, and met the man I'd eventually marry. We rented an apartment in Portland, where he worked doing lay-out for a weekly sales flyer; I was unemployed. Nights, we lay awake fretting over money, talking about what we wanted to do with our lives and how to shape that hazy vision into substance. It was Jake who first suggested I try writing something longer than the stories and poems I'd shown him. Most were about growing up Catholic; all reflected my concern about the effects of traditional Catholicism on the lives of women in general and rural women in particular.
"Maybe," he said in his soft-spoken way, "you could reach more people with novels."
Had I not become ill, I doubt I could have kept still long enough to finish reading a novel, much less attempt writing one. In my past life, I'd never been much of a student. Instead of reading, I played the piano. I went hiking and cross country skiing; I went rock-climbing and winter camping; I studied jazz dance and classical ballet.
"It's like living with a ferret," a room-mate once complained.
Yet, it also seems inevitable that, regardless of circumstance, I would have eventually bumbled my way into writing something. I'm the sort of person who always comes up with the perfect thing I should have said several hours after a conversation has taken place, usually during the middle of the night as I play the scene back, revising it, revising it, until everything makes sense in a way it never could in life. In life, I forget important names and anniversaries, the location of restaurants, the titles of books I've just read. In life, I am the sort of person who needs to have jokes explained, who hears that a duck has walked into a bar and embraces that image, satisfied. Writing is a way of creating the punch line I have missed, inventing the name I can't remember. Writing is both the necessary map, and the X on that map that tells me where I am. When I write, I give myself the last, resonant word, and everybody listens. If a duck walks into a bar, that bar belongs to me.
The resulting narrative, when I'm successful, is far more truthful than its factual roots, and this – rather than any betrayal of confidences – is what gets me in trouble with members of my extended family, with casual acquaintances and not-so-good friends. "(continued)" people ask after reading something which, in my mind, has nothing to do with them. Or else: "How did you know about that?" I'd written several books before I understood that it wasn't my scant use of facts they were reacting to. It was how I had claimed the last, definitive word on those facts. It was how those facts had been shaped into a story all their own, with tidy motivations, logical developments, resonant closures. It was the way those facts had been illuminated with meaning.
Facts in themselves are as limiting as fences. We don't require them as often as we think. Why carve up the imagination with all those long, straight lines? I can follow a fence for awhile if I must, but inevitably, I hop it, drawn along paths suggested by the contours of the landscape itself. For awhile, things resemble the landscape of my own life, the so-called real world, but then I round a bend. There are subtle shifts in perspective. Certain colors are heightened; others shimmer and fade. A double moon rises in the sky. By its other-worldly light, I see someone who resembles a dear friend, an imagined lover, a neighbor's child – but five drafts later, fifty drafts later, I understand that I am mistaken. This character is a stranger. I have never known, never thought to imagine, anyone like this character before. It is this transcendent moment that amazes me again and again. There is always that point when the sum of the parts becomes larger than the whole.
And yet, I did not, could not, write about my father. No matter how his character might have changed, his situation evolve into an unknown landscape, the word tuberculosis would have had to remain, like a tombstone, like a monument, visible for miles.
All of my novels have begun as an attempt to answer questions, to reconcile contradictions suggested by details –- Chekhov's "little particulars" – dislodged from the lives of people who have mattered most to me. My first novel, Vinegar Hill, evolved out questions that had to do with a very brief period of time in which my family lived in my grandparents' house. It was there that I became keenly aware that my mother and I were not considered family the way that my father and brother were – my mother because she was an Ansay by marriage, me because I'd lose the name (or so it was assumed) when I married. The fierceness of my grandmother's affection for my father and brother, coupled with her chilly distance toward my mother and her absolute indifference to me, only served to underscore the irony of her own situation: she was not family either. Her position as an Ansay was every bit as precarious as our own. And to make matters worse, my grandfather knew something about her: a secret. Whenever she raised her voice to him, he'd threaten to tell.
I never learned what this secret was, but there were several clues. When I was fourteen, my grandmother pulled me into the bathroom by my wrist. There, speaking through tears, she told me that sex was for the sole purpose of bearing children, and that once I passed out of childbearing age, I was free to deny a husband anything more. My grandfather had persisted, but she'd known her rights. She'd gone to the priest – on her mother's advice – and the priest had made my grandfather leave her alone.
And then there was this: she'd been past twenty-five, an old maid by the standards of the day, when she'd married. Her father had approached my grandfather, and the two had negotiated until my grandmother's dowry was sweetened with the promise of good land. My grandfather told me the story several years after my grandmother had died.
Vinegar Hill was published in 1994. It was simultaneously a meditation on my grandparents' secret and a critique of the Catholicism which had bound them to each other for life. I had written it when I was twenty-four and twenty-five, but I was twenty-eight by the time I'd found a publisher for it, and I'd just turned thirty when I finally held the first copy in my hand. After all that waiting, I'd expected to feel something like joy. Yet, what I experienced was cold, cliched dread at the thought of what my Catholic relatives would have to say about it. Their reactions, in fact, would range from enthusiasm to bewilderment to a genuine concern for the state of my soul. But none could compare with those of an audience I hadn't considered: the citizens of my Port Washington, Wisconsin: population 7,000. My home town.
Port Washington is a blip on the best of maps, set on a hill overlooking Lake Michigan. At the top of the hill is St. Mary's, an old Catholic church made of stone. Lodged in its steeple is a four-faced clock, one of the largest in the United States. Growing up, it seemed to me that no matter where I was, or who I was with, or what we happened to be doing, the eye of that clock was fixed upon me, unblinking as the eye of God. Who could resist such a landscape, so ripe for metaphor? I borrowed the hill, the church, the clock for the fictional town where Vinegar Hill is set. I also borrowed my grandparents' house, which resembled many houses in Port Washington, furnished with the same hanging jello molds, the same framed biblical portraits, the same avocado carpeting. I borrowed Lake Michigan — it is, after all, a big lake — and I borrowed a few other general details. The swimming pool downtown, for instance. A particular tourist-trap restaurant.
Not exactly the town's crown jewels.
To be fair, I was expecting some flack about the church and its clock; I'd expected to be asked if it was St. Mary's. Yes, I'd planned to say. You figured it out, you've got me there.
That, I thought, would be the end of it.
What I wasn't expecting was all the people who would accuse me of setting the novel in their home. Who claimed to recognize my protagonist, the mother of the family, as their own mother, their own best friend, even their own self. Who showed up at the readings I gave in the Milwaukee area to chant the refrain of my childhood: if you can't say something nice, don't say anything at all. In a bookstore, during a question-and-answer exchange, the mother of a childhood friend stood up with tears in her eyes. "Nothing like this really happened to you!"
"You're right," I agreed.
We stared at each other helplessly.
The fervor, in part, was fueled by an article in the weekly paper which had run just a few days before I came to town. Its author, a well-intentioned local woman who knew my family in a general way, discussed the book the way one might discuss a nonfiction expose. Even my title, she asserted, was "real," and she took it upon herself to engage in a bit of investigative journalism in order to determine its origin. "Vinegar Hill" was quite possibly "Sweet Cake Hill," a small street in Port Washington.
The truth was that I'd struggled to find a title. I'd known early on that it would be the name of the street my characters lived on; I'd known, too, that its connotations should reflect the book's bitter sensibility. And yet, two months after the manuscript was finished, the title page was still blank. I was living in upstate New York at the time, and one day, driving out of town to see a friend, I glanced up to see a street sign I'd never noticed before. Vinegar Hill.
I leaned on my horn. I zigged and zagged through the autumn leaves. Never since has a title hit me with such absolutely clarity.
I once heard another writer say that we are living in a time of such cynicism that all nonfiction is assumed to be fiction, and all fiction is assumed to be nonfiction. The fact is that certain people will see themselves in your work, regardless of whether or not you put them there. There will always be the post-publication smirks, the howls of betrayal, the accusations of thievery. In a sense, it's liberating. You're damned if you do, damned if you don't.
And yet, in this case, I'm grateful that I didn't. As I was in the process of writing Vinegar Hill, an entire backstory appeared to me – not exactly based on my father's experience in the san, but springing from it. For nearly a year, I wrote this in, wrote it out. Ultimately, I let it go. How fortunate. No doubt, the reporter would have made that single accurate connection. The effect on my father, on my relationship with my family, would have been devastating. And the effect on my writing? One could argue that I'd be a better writer for the experience. One could also argue that I would not have gone on to write as prolifically, as freely, and with the sense of joy that sustains me, had there been that weight on my conscience, that distracting sting.
I published a second book, a third. Since handicap access to public transportation can be, as my father would say, "a challenge," he arranges to meet me when book tours bring me home to the Midwest. He picks me up at O'Hare, chauffeurs me to readings and interviews in the Chicago area before driving me north to Milwaukee, Madison, Minneapolis. We take the backroads, the rural highways he still remembers from when he was just starting out, fresh from the san, working as a traveling salesman selling fertilizer across the Midwest. We listen to polka tapes and AM radio. My father points out how the little towns have changed, admiring the Walmarts, the shopping malls, the super-size grocery stores. "When I used to come through here, there was nothing but cows!" he declares, biting happily into a deli sandwich.
By now, I am thirty-two years old, and though I've never received a fully satisfactory diagnosis, my health has stabilized. I'm able to walk short distances unassisted. Instead of using a wheelchair, I get by with a three-wheeled electric scooter. I write on a computer with an ergonomic keyboard and a voice-activated program, which I use when my arms flare up. And I do have flare-ups, bad spells which can last months; still, I've come to trust that, with time, things will settle down. What I cannot anticipate is that, in another year, my eyes will be affected. Everything about the way I write will have to change. I'll need to learn – as I still am learning – how to work in my head, because when I actually sit down to write, I'll never know how long it will be before my vision blurs and the accompanying headache settles in. On good days, I have thirty-minute work blocks; on bad days, only a few minutes at a time. I'll write my next novel in snatches. I'll sacrifice television, movies, all but the most essential reading. And without these past-times, pleasures, distractions, I'll have plenty of time to dwell on the larger issue at hand: what next?
Yet, in one way or another, this is everyone's larger issue, and one of life's few consistent blessings is that we cannot know the future. Right now, it's an early evening in July, 1996. I've just finished speaking to a book club in Madison, and my father and I are driving north toward Minneapolis, passing between the endless darkening fields. My father has been evaluating my response to the book club's questions, pointing out places where my answers were too long, recalling missed promotional opportunities, drawing my attention to a moment when, caught off-guard, I made a self-deprecating remark. To an outsider, this post-game analysis might sound unpleasant. It isn't. His delivery is practical, rather than critical. He evaluates me the way he might evaluate a fellow salesman.
"The product is good," he says, thumping my latest book with affection. From the start, he's taken an active role in marketing my books. After Vinegar Hill was published, he filled a suitcase with signed copies and packets of reviews, then flew out to California, where he drove from San Francisco to Seattle, stopping at every bookstore he could find along the way.
"If a product is good," he declares, "it will always sell."
And now we've settled into comfortable silence, polka music chortling from the radio, the last of the sunset lapping the curve of the horizon, when he says, "Are your legs bothering you?"
So they are. I realize I'm wearing what my husband calls my "gray look," the angry, impatient expression I get when I'm in pain. In pain – such a maudlin phrase, and yet I'm fascinated by its implications. In pain, like a faraway place or a state of mind; like a country where you've gone to live for awhile. In the Arctic Circle. In a state of grace. My arms are aching, too, particularly my right elbow and wrist. I am right-handed, and everywhere we go, there are books to personalize, stock to sign.
"Tomorrow is a light day for me," I remind us both. I'm scheduled to fly to Seattle in the morning; my next reading isn't till the following night, and I have nothing to do in between except speak to a university class, which is something I particularly enjoy doing. I'm thinking ahead to that, and to San Francisco, where I'll be heading after Seattle, and the friends I hope to see while I'm there, when my father says suddenly, almost savagely, "It's such as shame this had to happen to you."
For a moment, I think he's talking about my writing career, my books. Then I understand. I look at him, at his unrelenting profile, so much like my own. Yes, it is a shame – and no, it is not. It is simply what it is. Meaning is the color of whatever lens we happen to wear when we look at our lives. "Such a shame," my father says again, and his voice, which is gentler now, breaks. And I realize he has carried this thought for a long time, a weight every bit as constant, as distracting, as my own physical pain. I see him at nineteen, working in his father's fields, so tired that by noon he must return to the house. I watch as he sits down on the porch steps, too weak to go inside. Thinking, "What the hell is the matter with me?" Thinking, "Am I losing my mind?" Thinking, "If only I work a little harder I'm sure I can shake this off." He entered the san as a young man with prospects; he left at twenty-one, missing most of one lung, with no idea what he would do next. Men his age were heading for Korea. Women his age awaited their return, rings shining on their fingers. He had toppled out of his life the way, someday, I would topple out of mine. He would start over, work his way up from entry-level sales, start his own company. He would fall in love and have children. He would stand in the doorway of his oldest, the excitable one, the one so full of energy that, as a child, she'd prowled the house in her sleep, and he'd tell her that, someday, she'd look back on this time of stillness and it would be nothing at all. You'll start over, he assured me. You'll catch up. You'll find a way to turn all of this to your advantage.
I remember how he took my photograph – over my protests – sitting in my first power wheelchair. "To look back on," he said. "After you get better. After you don't need things like this anymore."
We are hurtling through the absolute country darkness of western Wisconsin: no light pollution, no other cars. There's only the sunburst of our own headlights, illuminating the road just ahead of us, just in time. E M Forster said that writing a novel is like driving a car at night with the headlights on: you can't see your final destination, but you can see enough to make the whole trip that way. The truth is this: I am not getting better. I do not know my destination. All I know is the circle of light just ahead, its shifting geography. And suddenly, more than anything else in the world, I want to write down what I see. Because it isn't a shame so much as a wonder, if only because it's so far away from anything I might have imagined or dreamed. The way my father's life is different from what he had imagined, coming in from the field, coming home from the san, and thinking it was all over for him when, in fact, it was only beginning. It is not that I believe the things that happen to us happen for a reason. I certainly don't believe that things have a way of working out for the best, something I've been told countless times by well-meaning doctors, family members and friends. But I do believe that each of us has the ability to decide how we'll react to the random circumstances of our lives, and that our reactions can shape future circumstances, affect opportunities, open doors. The truth is that I love my life, and to love it fully, I must acknowledge that it could not be what it is had I not fallen ill. And I told my father all of this as we drove toward Minneapolis. I told him how important it was for me to write about his illness, as well as my own.
It was the perfect opportunity for him to say he understood, to tell me I was free to write whatever I wanted, with his blessing. If this had been a fictional scene, he would have done so.
But it wasn't fiction. It was just another moment in the random sprawl that constitutes real life. In fact, several years would pass before he'd phone me one day, without motivation, to say that if I wanted to write about his time in the san, I could do so. I thanked him. He changed the subject. That was in November of 1998. We have not discussed it since.
For years I told myself that I couldn't write about my illness because of the promise I'd made to my father, and the story was so convincing that I believed it whole-heartedly. The truth, which I am gradually learning, is that there are many reasons I did not write about it, and that was only one reason, and another one is this: I wasn't ready. I did not know how.
But I'm learning.
These days, I've been working on a memoir, a geography of illness which is nothing, it turns out, like the logical landscape of fiction – with its linear plot lines and thematic justifications – but which reflects, instead, a terrain that is more like life itself: capricious, frequently truncated, punctuated with false starts and frail promises and unexpected moments of beauty.
There are no explanations. There is no steadying railing of cause and effect.
It's easy to see why someone might think I'm making it all up.