The Story I Need To Tell Now
I got voice mail from a woman on the West Coast named Celestina. She was calling to discuss a medical issue, she said. I’d met her just once, years earlier, when she and her husband Walter were in New York to collect a prize for their joint translation of a volume of ballads from the Maltese.
Walter’s path and mine had first crossed in the late nineties, at a conference of translators, long before he and Celestina became an item. Single then (or so I assume), he signaled interest soon after the conference, doing so with such understatement that only long afterward did I fully grasp his intentions.
A native of southern California, Walter lived in the Bay Area. He was about fifteen years older than I, which would put him in his late forties when I first knew him, slim, with a pleasant, lined face, thinning hair, and a signature navy-blue beret that seemed as much a part of him as, say, his nose. He wrote prolifically for literary periodicals up and down the West Coast, alluding frequently in his work to Charles Bukowski, Henry Miller, Philip Roth, and other misogynistic titans of the Western canon. He was also a talented poet. An inheritance from his father’s art gallery and auction house had released him from the daily grind.
He wrote to me, longhand. His letter arrived in the old way: folded inside a sealed, stamped envelope and dropped through the slot by a kindly civil servant in a blue uniform. My God, things were so corporeal back then; the flap probably bore traces of his saliva. Email was the big new thing, and he was one of the holdouts—every big new thing has a few of those. Our correspondence, my side laser-printed, went on irregularly for a year or so.
At the time of this courtship, for lack of a better word, I was still reeling from my first divorce. I wanted more than anything to step smoothly back into my old role of youngish married woman poised on the cusp of motherhood. To that end, I was ready to give several chances to almost anyone, including a man a decade and a half my senior who lived on the opposite coast and sparked nothing in me. For the right man—who might not immediately make himself known as such—I believed I might be willing to upend my life.
The illness was probably growing within me already, but the diagnosis was years off. Any burgeoning symptoms I had then were mild enough to overlook. I was still what is called “healthy”; I still believed that I would have a child by somebody. Sometimes I’ll come across one of Walter’s letters, because it’s hard for me to throw away anything with handwriting on it, and the sight of that distinctive script sends me back to a time when ending up childless seemed the worst possible fate.
As it turns out, it’s not as bad as I feared. Each time I hear of parents estranged from their children, or see someone whose offspring bring them more suffering than joy, or worse yet, leave them indifferent, I’m reminded that there are no guarantees. After each mass shooting, my thoughts—I am not a praying woman—go not only to the victims and their families, but to the gunman’s parents.
Back when I was in my thirties, it was easy to pine for a baby. Babies are blank slates, or appear so. But the baby I failed to conceive in my thirties would be a teenager now, maybe a sullen, pimply one, or maybe a twenty-something failing to launch, and phantoms such as these evoke no great yearning. Of course, that child-who-never-was would also have charms and endearing quirks that I’ll never see or know, but for that very reason, my regrets now lack a certain crispness. I don’t know what I’m missing, there can be no doubt of that—only someone who has children can say what it means not to have them—but I have finally learned that while people with children surely experience a variety of love I’ll never know, they aren’t necessarily better people, or happier, their lives not necessarily richer.
I was living in Philadelphia when I met Walter. When he was planning a trip to the East Coast, he’d drop me a postcard, always bearing the same image of San Francisco’s fabled City Lights Bookstore. “If by chance you are in Manhattan then…” he would write, like the prospective employer who won’t bring you in for the interview but will gladly help you save face if you’re eager enough to show up anyway. I would hop the train—the commuter train, because it was cheaper than Amtrak, and at age thirty-three or so I still had the deprivation mindset of a college student, and the stamina. I changed in Trenton, which added an hour each way. And the seats were hard.
We never kissed. I never saw the inside of his hotel room, let alone the ceiling above the bed. After a few hours, a meal, and some halting conversation, I would head back to Philly. One time, he stood with me in front of the departures board at Penn Station. The train was delayed, the wait awkward. A persistent beggar happened by, who we did our best to ignore.
In the mid-aughts, Walter emailed to say that he and his new wife would be in New York, where I now lived, for the prize-giving at the Maltese Consulate. “Celestina came into my life,” he explained, “at that same annual gathering of translators, different iteration, a few years after you and I met. She’s around your age—I’m a strong believer in cross-generational relationships—smart and funny—kind of like you, actually.”
Now I understood. He had a type. Celestina was that type, and so was I.
“She even looks a bit like you,” he added.
When they came over for dinner and I set eyes on her, I saw no resemblance. She was lovely, with smooth wings of dark hair, a flawless complexion, and a charming accent. She’d grown up under house arrest in Albania, she said that evening, punished for the crime of being related to prominent members of the Albanian diaspora who had, during and after World War II, actively supported King Zog’s return from exile and the restoration of the monarchy. When Communism imploded, Celestina went west.
She was younger than I, and far more accomplished. She had many translations to her name, mostly poetry and songs, from and into a plethora of languages that included Greek, Macedonian, the aforementioned Maltese, Torlakian, Arvanitika, and others that were more obscure. Many of these she had picked up as she zigzagged across the Balkans and along the Mediterranean littoral, stopping off to see friends on the journey that would eventually land her in the United States.
She’d also penned several original works of fiction, some in French, which was her second language, and some in English, her eighth. (According to her Wikipedia entry—I had done my homework—her mother, a cultivated woman, had spoken French at home, making the children swear, of course, never to reveal to anyone outside the immediate family that they knew a capitalist language.) Several of Celestina’s books had been picked up by respected small houses here in the United States. How, I marveled, do you land in a new country and then do that?
She even had a pseudonym that she used for occasional forays into erotica. That, she hastened to add, was something she did strictly to cover the bills. It went without saying that since her marriage to Walter, the erotica had tapered off.
That time when the four of us met (Trystan and I had recently married), she barely addressed me. She recognized her own gifts, that was clear. She struck me as the sort of woman of letters who holds honorary man status, moving in intellectual and literary circles like some latter-day Hannah Arendt or Susan Sontag, not spending her time on women.
Trystan made his flambéed scallops, sloshing on more cognac than usual, and the flames shot up nearly to the ceiling. Celestina and Walter gasped with delight. And I don’t know if this is connected, but while many people took an instant dislike to Trystan (he tended to ask annoying questions that made him persona non grata, kind of like Socrates), those two got him instantly: the sly, misanthropic wit, the gloom tinged with irony, and the attitude toward success: studied disinterest shading into distaste. Despite their own impressive credentials, Walter and Celestina sniffed at strivers too, I discovered that evening, a luxury enabled by the gallery and auction house.
Those same family businesses had allowed Celestina to quit a tenure-track job in the Midwest to move in with Walter in California. By that time, I could not imagine trusting any man enough to place myself in a position of dependence as she had, but certainly I would have enjoyed, for a time at least, the novelty of being supported. I passed my days gazing down at the East River from a cubicle stacked with battered Russian and French dictionaries, while Trystan, nine years my junior, worked—asymptotically, it would turn out—toward a doctorate in philosophy.
After the evening of the burning brandy, I thought of Walter occasionally, with mild regret. His house was on a mountaintop, I remembered from those long-ago letters, the stillness there so profound that in season you could almost hear individual grapes falling from the vine and landing in the soil. I imagined the two of them side by side at their respective desks day in and day out, churning out prose poems, flash fictions, novellas, fables, mocku-memoirs and nonfiction novels, as well as other works, both conventional and genre-fluid.
And now, this message.
I could not fathom why Celestina was calling. A medical matter, she’d said. Could she possibly have the same illness I’d been diagnosed with soon after meeting Trystan? I must have mentioned it that evening at dinner. Lymphangioleiomyomatosis, which had by then eaten away four-fifths of my lung function, affects fewer than ten women per million. That Celestina had now entered our select ranks seemed unlikely.
I returned her call.
“It’s you? Really you? From New York?” she asked, uttering my first name, then both first and last, with an excitement that seemed nearly abject. How could I be calling her? her tone implied, as if I’d descended from Mount Olympus to favor her with a call—owing, perhaps, to bad reception up at the summit—and would soon sign off and rejoin my fellow deities above the clouds.
I felt a surge of tenderness. I wondered if her previous hauteur had existed purely in my imagination. Perhaps she had in fact been paralyzingly shy (easy, sometimes, to confuse with excessive self-regard), and instead of bustling around and setting her at ease, I had been the standoffish one.
“Yes, that’s right,” I said, hoping she could hear the smile in my voice. “From New York. Calling you back.”
“You are so kind to call—so kind. Thank you.” She sounded short of breath. At the words ‘thank you,’ her voice cracked.
A long pause ensued. Then came a torrent of words.
Things had begun slowly, a few months before, then accelerated. The pounds began melting away, though she was eating normally. Before she knew it, one quarter of her body weight was gone. Other symptoms soon followed: tremors in her hands; constant chills; weakness that often made it impossible to remain vertical; terrible pains racking her arms and legs; intense nausea and vertigo; vile odors surging from every orifice. Drenched in sweat, she changed her clothes morning, noon, and night. She required fresh sheets every day. What a lot of laundry, said Walter.
Previously, she’d believed herself smarter than almost everyone she met. (Aha! My first impression had proven correct.) Now she couldn’t write or translate, could barely read in any of her numerous languages, couldn’t sustain a thought. She’d resolved to call everyone she knew who had any medical condition whatsoever and ask them to tell their stories. She thought the words and narratives would help. This was where I came in. But first, there was more.
She spent her days in a wheelchair, surfing the Internet and attempting to self-diagnose.
“I’ve been to so many doctors,” she said wearily. “So many different specialists. No one can tell me what I have. Many of them don’t believe me. They say I’m perfectly fine. They’re wrong, I know they’re wrong. Walter arranged for me to go to the Mayo Clinic, but I was too sick to board the plane. I even—” she broke off.
“Please go on—if you want to,” I said.
“No, no,” she said. “Never mind.”
I heard a man’s voice in the background.
Hers dropped so low I could barely hear. “That’s him. He’s saying that I’ve forsaken him for my illness.”
“Please—” tearful now, she continued in a whisper. “Talk. I can’t. Talk.” Her voice got lower still as she said, “Anything—say anything. Please. It all helps. Tell me your story. Tell me now.”
Seriously ill for a long time, I had gleaned plenty about the vagaries of the body and their effects on the mind and spirit, but Celestina’s situation was beyond my ken; my diagnosis had come down quickly, with no torments of uncertainty, and my symptoms, while debilitating, did not take long to enumerate.
There are so many things that can go awry with body and mind, leaving each affected individual marooned amidst her own unique difficulties. At best, I could offer little more than a modicum of understanding. But my attempt to understand was apparently all Celestina sought: a human voice, someone to take her hand and lead her—if only for a time—out of the isolation that is the frequent lot of the chronically ill and the disabled, whether they are alone or in a crowded room.
And so, keenly aware that our situations did not rhyme, but wanting to do something for this near stranger who was a fellow exile from the land of the able-bodied, I took the deepest breath I could, and I began. I laid it all out, not troubling to keep things brief as I do when healthy strangers question me about my condition. They ask out of idle curiosity, waving a finger in the region of their nostrils to indicate the oxygen tube in mine, and when the conversation turns grim, as it inevitably does, they move rapidly to shut it down.
“Well,” they say, in a transparent plea to change the subject, “you look great!” or, “You seem to be managing quite well!”
“Managing,” I echo softly. “What does it mean?”
Celestina, on the other hand, hungered for details and overrode my attempts to spare her the revolting and the indecent that every chronic illness offers in abundance. She wanted to hear it all: how the medicines raised rashes, mottled my skin, swelled my ankles (asymmetrically, just as the package insert promised), sprouted bristles on my chin, made my scalp itchy, my breath foul, my shit runny and clear like water—nothing on this list painful, all of it problematic—hell, if I wanted to tell her how the remedies affected every last one of my exudations and created repellent new ones, she wanted to know. I sensed that, health permitting, she would have stayed on the phone almost until the end of time.
Hearing about my travails seemed to provide relief from her own, story somehow equaling respite. I don’t understand the mechanism and I think I never will. But I was ready to lend my misfortune to the cause. It has no other use. It has no other meaning.
I started with the sharp stabbing in my chest that came on one morning as I was getting dressed, deepening with every breath and movement, reducing my voice to a scratchy whisper. I paid these symptoms no mind; I had lived illness-free my entire life, so the possibility of something going awry did not cross my mind. I dwelt in the fairyland of nothing-bad-ever-happens, from which I would soon be unceremoniously deported.
I told her about how I walked around with those acute and unfamiliar symptoms, trying to convince myself that this was merely the onset of some ordinary bug that would clear up shortly. For decades, I’d treated flus and colds with scalding lemon tea spiked with vodka and a dash of honey to soothe the liquor burn (a remedy picked up from some Russians I hung around with when I was young). No doubt this ailment would yield to the same treatment.
It did not.
When the stabbing came on, I was visiting Trystan in his student digs in Montreal; it was about a year into our relationship, and he had not yet moved down to join me in New York. He didn’t take my symptoms seriously, either. I cannot blame him; he was following my lead. But with people around us urgently pressing me to get checked out, he got me to the hospital and stood next to me as, again and again, a doctor rammed into my left side something long and very sharp, sharper even than the pain that had landed me there.
“Je ne suis pas bonne avec les aguilles!” the doctor exclaimed upon missing her mark. That’s French for “I’m no good with needles.”
“Elle vient de New York,” someone had said when the doctor came in, the words traversing the space above my body from one side of the operating table to the other. Lightly anaesthetized, perhaps too lightly for what was to come, I was slow to grasp that the “she” who came from New York was me. The words no doubt freed the doctor to express herself without restraint in a language she assumed I would not understand. Hey, I’ve made the same mistake.
I think now that she was voicing the obvious in order to forestall commentary from the others present, and in that at least, she hit her target; as she poked hole after hole between my ribs, jabbing around for a soft place to puncture and drive deep, and then another, no one spoke: not the residents and interns standing around watching—it was a slow night in the ER—and not the nurses who held my hands, massaged my temples and set out fresh bandages, rubbing alcohol, and metal implements wrapped in crackly sterile paper.
Another flubbed attempt, and again the doctor exclaimed, “Je ne suis pas bonne avec les aiguilles!”
The third time, I turned my head slightly toward Trystan.
“Est-ce que tu veux attendre dehors?” I asked.
If the doctor was merely bad with needles, Trystan hated and feared them. During our first weeks together, he’d balked at having blood drawn for an STD test. (I caved, because in the early days he radiated purity. Toward the end, he no longer did, and we both got tested. But I’m getting ahead of myself.) Now I gave him the option of stepping out into the hall; the multiple, jagged paths the doctor was hacking through the thicket of flesh and bone that was my thorax were no reason for both of us to suffer.
Trystan remained doggedly at his post, but my question served its primary purpose: the doctor worked on in silence now, avoiding my gaze.
The X-ray had revealed a collapsed lung, also known as a pneumothorax. She was trying to place a chest tube to drain the chest cavity, so that the lung would right itself. A pneumo, as one of the bystanders explained during that long, long night, meant that the inner wall of my lung had caved inward. Imagine you’re on a camping trip, this person said, and there’s a torrential downpour. The roof of your tent sags beneath a massive puddle, decreasing the available space inside the tent. That’s your lung, except that the sag, the concave part, is at the side, not the top. Either way, the space that is needed to breathe is severely diminished.
“Am I telling you too much?” I asked. I had forgotten who I was talking to, and why. I had been talking for some time, and I was still at the beginning.
“Oh no, no, no, this is important,” said Celestina.
But her strength was flagging, and so was mine, and she was drenched again.
Picking up the thread in our next call, I told her about the diagnosing doctor who had entered my life a few months later, when my lung collapsed for the second time.
“Let’s see,” said this doctor, counting off on her fingers the symptoms of the disease. (They were few in number, but her gesture made them seem numerous.) “You can expect shortness of breath, fatigue… I think that’s all.” It sounded manageable. Then she mentioned in passing that the disease might kill me some years down the road.
Telling the story incoherently, just the way it unfolded, I skipped ahead to the present. The walls have been closing in for years now, I said; from a high-flying international career as a simultaneous interpreter, I’ve switched to a humble desk job. I work from home a few days a week, the first person in my office to do so. (‘Piloting a new productivity paradigm,’ my supervisor calls this.) I go out infrequently, barely travel. After a short walk or a few stairs, I gasp for breath. I’ve been cautioned that having children in my condition comes with serious risks.
Because it seemed somehow off-topic, I didn’t mention that the pregnancy warning came two months into my marriage to Trystan, when I was thirty-nine. Our marriage seemed like an excellent idea at the time—it did. Trystan cared for me with understated devotion, saving me from facing the illness alone. Plus, his previous girlfriend had had two abortions, so I knew that in the very narrowest sense at least, he was capable of fathering a child.
These notions were too inchoate to be calculating. It simply felt right, by which I mean inevitable. I would not fit the pieces together until nine years in: that, oh my God, reason number one for getting married, babies, had immediately been canceled out by reason number two, illness.
LAM strikes young women. We LAM women tell each other stories about husbands who prove steadfast and supportive, and husbands who bolt upon diagnosis, sometimes directly from the doctor’s waiting room. We also tell stories about boyfriends who step up and prove excellent caretakers. This can lead to weddings that, like green card weddings, involve people of differing status who marry for reasons external to the relationship. Weddings that might not, under normal circumstances, take place. Forget the stories you’ve heard (largely from women) about true love revealing itself when the man didn’t desert during a serious illness. (A stalwart woman caretaker is commonplace and barely worthy of note.) Where love is concerned, sticking around in a medical crisis is a necessary condition, but it is not sufficient.
During that call or the next, I spoke about that feeling of being out of step with humanity. The world isn’t designed for us; the world is a party whose door is continually being slammed shut in the face of every person with a disability. Every steep flight of stairs or out-of-service elevator is like the bouncer at the velvet rope. I’m wearing the wrong outfit, no matter how elegantly I array myself; accessorizing with an oxygen tank and breathing tube gets me turned away at the entrance.
Not for nothing is my illness termed degenerative, I went on; after close to a decade of near stability, I was declining again, declining steeply. For some years now, the doctors had been talking double lung transplant. The topic came up each winter when the cold depressed my lung function, which it did slightly more with each passing year. My pulmonary test results always bounced back when the temperature rose (but only partway; the general trend was down), and so each year in the spring the extreme measures were taken off the table. Inevitably, the temperature plunged again, and with it my test results, and the topic of transplant was broached once more. This was getting wearisome.
When my lungs underperformed, the laconic young technician who tested me every few months would step into the hall and confer in an anxious undertone with a senior colleague. The senior colleague would put me through my paces again, and replicate the results. Next, with the kind of sorrowful gaze that medical personnel are supposedly trained to suppress, the technician would tell me what I already knew: that my condition had worsened. I would crack jokes in a vain attempt to make him smile, jokes that sometimes veered uncontrollably morbid. He would look on reproachfully until I fell silent.
I told Celestina that when I joined the ranks of the seriously ill, I was uninsured.
“Est-ce que c’est serieux?” said the sweet nurses in Montreal when confronted with this fact. “Mais, c’est pas possible!”
I tried to explain to the Canadians that I was from a country where health care is not a universal human right. Unable to make sense of this, they nonetheless placed my bed in the hallway overnight so that, as a foreigner who hadn’t paid into the system, I wouldn’t be charged for a room.
The bill for the procedure came to just $800 Canadian. The exchange rate was favorable that day, so, given that my credit card was my de facto health insurance, it was, all in all, a good day for a collapsed lung.
In the years that followed, I clawed my way into jobs with health coverage, alternately concealing my condition and ignoring it. My insurance progressed from nonexistent to a policy that covered next to nothing but served to establish coverage, so that my preexisting condition would at some future date cease to be preexisting. I segued from contractual to permanent employment, qualifying gradually for better and better policies. Doctors and receptionists accorded me increased respect as my coverage improved, respect that was always commensurate with whatever insurance card I produced at a given appointment. At one point I discovered that I held two insurance plans; human resources at one place had forgotten to terminate my insurance when I changed jobs and got a new plan. I kept both and kept quiet.
Just before I had to switch from a plan that covered the pricey, essential medicine that slowed the degeneration to a plan that did not, I asked the company that covered it if they could please approve a six-month supply.
“Oh no,” said the woman on the phone, “we can’t do that—not unless you’re planning to be out of the country for that length of time.”
“I am,” I said quickly.
A few days later, I took delivery of boxes and boxes of the stuff. It bought me time to plot my next move as I leapt, slow motion, across the abyss.
Celestina told me tearfully that Walter was talking of leaving. “He says I’m not the woman he married, and he’s right.”
My thoughts went instantly to money: what would happen to her insurance, to the aides? She had placed herself in his hands not long before our sole face-to-face meeting. Back then, I had envied her trust, but also feared for her, even as I barely knew her. You don’t just walk away from one of those tenure-track jobs; they are terribly scarce.
I recalled my long-ago train trips from Philadelphia to New York. The beggar in the station. Sometime around then I’d turned down a plane ticket to California. Was it Walter who offered it? Or some other man I met who came from out there? My memories from those years are foggy.
Celestina was in the wheelchair all the time now, except when lying down. The computer rarely left her lap. She had always just discovered what she had, a different condition each time we spoke: an autoimmune disease; a virus; a genetic condition; something environmentally induced. She had run through all the doctors in the region.
“I have no friends,” she announced mournfully one day. “All of my friends now are Walter’s friends. No one believes me.”
Oh, the illness atheists! They are worse even than the armchair practitioners with their unsolicited remedies, always leading with the words “Have you tried…?” (fill in the blank with turmeric/celery juice/shiatsu/yoga therapy, or numerous other tinctures, unguents, decoctions and salves). The illness atheists cannot see your illness or touch it, they cannot feel your incapacitation and your pain, and so, as the self-appointed Arbiters of Other People’s Diseases, they unilaterally declare it nonexistent or not worth worrying about. (“We’re all getting older, my dear.”) Just try explaining that the disorder is eating its way, as you speak, through internal organs concealed beneath blankets of flesh, muscle, and fat.
No, it isn’t visible, and from that it follows, as the night the day, that the sick person is not only a liar, but also a slacker, a whiner and a cheat. We commit the ultimate sins: we consume without producing, we opt out of almost everything, worst of all, we never hurry. We are immoral; we are weak; we are a living argument against the Protestant, capitalist ethic of perpetual motion that has mentally colonized us all. Our mode of existing is itself a form of passive resistance. So there is nothing to do but shame us. And what chronically ill person has not succumbed to the pressure, has not felt shame at their inability to move, to do, to rush, sometimes even to brush their teeth, shower and dress? Sickness and shame go hand in hand.
Celestina had not yet given up on being believed, and that was surely making her sicker. Did I believe her? I’m not sure that’s the right question. She did seem a bit deranged, but if she was, it was probably owing to the doubts of others. Sane or not, the sick are rarely believed.
As for me, I was long past caring if someone failed to take my illness seriously, or thought I was malingering. To those who expressed doubt, asserted that I looked to be in the pink of health, or, in one memorable case, said, “Yes, but are you in constant agony?” I replied with a laugh, “My lungs are in tatters. If you could see them, you’d be horrified.”
Get well soon, people say to me sometimes. Come on, people. Enough with the greeting card platitudes; this is not a get-well-soon kind of disease. My condition is hard to see, and harder to speak of: degenerative, it disables but does not rapidly close in for the kill. It devastates in an unspectacular way, almost sluggish, more drought than flash flood. There are so many illnesses like this: severe, even grave, yet invisible and slow-moving, not necessarily terminal but merely immiserating—I’m talking now about pretty much everything on the continuum from migraine to massive heart attack. We need language for maladies of this type. We need to drag them into view.
After we had spoken many times, Celestina confided that just before leaving me that first voice mail, she’d been released from a psychiatric hospital somewhere up the California coast. Now I remembered that early on, she had several times started to tell me something, then broken off.
For someone who came of age in what was by far the East Bloc’s most repressive country, checking into a psychiatric institution could only be an act of desperation; in that part of the world—for people my age and older, I’m stating the obvious here, but recently I met a young Russian immigrant, Jewish, who had never heard the word ‘refusenik’—the mental ward was, historically, the place where people who voiced unacceptable thoughts were sent to be broken.
During that stay at the seashore, Celestina had been given powerful psychotropics that made her symptoms worse.
“I begged them to release me, because as long as I was surrounded by insane people, I would not get well,” she said. “Walter brought me home.” she added. “With great reluctance.”
One day, Celestina lowered her voice again. “You talk now,” she pleaded, as she had that first time. “My husband can’t stand hearing me talk about my illness anymore.”
I said everything that came to mind. I don’t remember a thing I said.
We told each other more and more. We ranged outward into the borderlands of illness, but of course illness underlay everything we said to each other.
Celestina was coping with the hurt and incomprehension of her parents and brothers and sisters, who lived in the ancestral homeland near the Skanderbeg Mountains. She hadn’t told them about her health problems. They kept asking: Why do you no longer come back and see us?
She’d fled Albania with her first husband years ago, after they received death threats. What drove those threats, she didn’t say. Maybe, as is so often the case with mortal threat, there was no explanation.
She’d recently come across an old photo: Walter in a rented tux and her in a sequined cocktail dress slit high, heading off to some literary gala.
“We took ballroom dancing lessons to get ready, “she said. “How happy we look. Carefree. I’ll never get that back. I am not that person anymore.”
She knew that after a run of eleven years, Trystan and I were done. She knew about the affair. She knew that he’d attributed it to my illness (one of many reasons he gave). She knew that I wasn’t clear on whether this meant that life with me was too draining, or sex with me not draining enough.
She knew about the string of green Swarovski crystal beads that was now as much a part of me as the wrist I wore it on. Those green crystals were a talisman, and she knew that, too: a reminder that illness does not require the renunciation of beauty, in fact may mean discovering new forms of it. She knew that once when I was briefly hospitalized (some other part of my body acting up), not a single doctor, nurse or orderly so much as glanced at my green crystal bracelet; she knew the crushing exhaustion that rushes in each time someone in a white coat approaches with a needle or a brimming vial of something, and you have to explain your illness yet again because they don’t bother to look at the information provided.
She didn’t understand the exhaustion of spelling my disease’s polysyllabic name, though. And she didn’t have a green crystal bracelet of her own; her illness nameless, she had nothing to engrave on the tiny heart of stainless steel that dangled off it. Don’t worry, I told her. Those charms are small, too small to legibly accommodate the name of any illness serious enough to warrant a proper Latinate name.
If our situations were not as similar as she’d hoped when she first called, she never said so. Little had changed. Her symptoms were in constant flux; during the years that we spoke on the phone, the diagnoses streamed past like chyrons.
After we’d said all there was to say, we kept on talking, because when you’re housebound, telling stories is that thing you can still do. Our disembodied voices crisscrossed the continent and intertwined in the dark. At some point, my recollections of the things we said disappear into that darkness. Nor do I remember who called whom after the first few calls, who kept it going. Which must mean that both of us did.
She sought my story based on her sure belief in the healing power of narration. A story is like fire; if your neighbor drops by and asks for some, as people routinely did before matches came into wide use, you lose nothing by sharing. You get to keep it, undiminished, even as you give it away; the light and the warmth only spread.
A postcard came with that familiar handwriting on it, the first one in years. This one bore a black-and-white photo of Julio Cortázar, debonair in a rumpled trench coat. The legendary Argentinian was seated, brow furrowed, in a stone alcove above what appeared to be the Seine. Some of his poems were finally available in English, announced the post card, out from the publishing arm of City Lights, translations courtesy of Walter.
Who knew that Cortázar, a man with a gift for making dreams and waking life interlock and overlap like the black birds and the white birds in the Escher drawing, the author of a novel whose sections are meant to be rearranged so as to tell, with the same words, several different stories with differing outcomes (he provides to this end a helpful list of various ways to order the chapters), making the reader a kind of demiurge and master re-designer of time—who knew that he was also a poet? Walter knew.
“Thanks for your kindness to my suffering wife,” he had written, fitting the words into the space beneath the ISBN number.
When I first knew Walter, he ran a small literary magazine. Submit, he urged. I squeezed out something about the end of my first marriage, at that time my only one. “Shadow Bride,” I called it, and dropped it in the mail.
I went for offhanded melancholy, streaked with melodrama: “Defunct marriages, like ancient civilizations, leave strange debris sticking up at various angles from the windblown sand,” it began. “Half a set of salad servers, a stack of LPs but no turntable, a gap of several years in back tax records.”
Windblown sand? Why sand, I’m wondering now, all these decades later. Perhaps in some remote chamber of my mind, these words were stamped:
“…Two vast and trunkless legs of stone
Stand in the desert… Near them, on the sand,
Half sunk, a shattered visage lies…”
In any case, speaking in what I hoped was a tone of wry wisdom, hard-won, I wrote about emerging from years of marriage into the still-bright light of afternoon as from a cinema following a matinee, a broad swath of time still stretching ahead. I described going to my sister’s wedding in a pale-pink, floor-length dress and a picture hat with a large silk rose, an outfit that got me mistaken for the bride (who wore electric blue). My divorce had become final a week or two before.
Further in, I wrote about a friend who decided at forty to marry someone she’d known for two weeks, this after frequent declarations in her twenties and thirties that she wanted neither marriage nor children, just sex, lots and lots of sex. (One year for her birthday, her mother had given her a monogrammed condom case, saying, “My dear, if this is how you want to live your life, I want you to be safe.”) We who knew her thought she was marrying to say “done that,” and then que sera, sera, and so on. Now that pair is closing in on their twentieth anniversary, and though theirs is not a marriage I would want to be in—but then, I don’t know any marriage I’d want to be in, including those I’ve been in—it is one of the happiest ones I know.
I wrote that I’d loved my husband ardently—more, I believed just as ardently, than anyone before me had ever loved. I noted with poorly concealed pride that remembering our love so clearly, even as I left him, was indicative of my ability to hold a contradiction in my mind without sacrificing my sanity.
More anecdotes and observations followed one upon another with no clear point; rejecting the dictum famously handed down by some titan of the Western canon, I did not kill my darlings. And all these years later, I have to admit that my attitude towards writers who kill their darlings remains one of incomprehension: why kill anything? And why kill a thing of beauty—your darling—a thing that you’ve conceived, gestated, loved, and dreamt of giving to the world, even if that thing is one line, or a paragraph? A darling is a darling, no matter how small.
There’s this sentence in “Shadow Bride” that I labored over for hours: “I have come to believe that forever is not necessarily an infinite period of time, but sometimes rather a state of infinite hopefulness that causes a potentially finite period of time to temporarily appear infinite.”
The audience laughed when I read this out at an open mic.
I interrupted myself to ask, “Is that funny?”
They laughed harder.
Walter declared himself absolutely wowed by my little mishmash. His enthusiasm seemed suspect, though at the time I didn’t give it much thought. And even if, as seems likely, the piece made it into his magazine on something other than its merits, the publication was a watershed for me; my only previous bylines had been for translations or the odd article in a small-town newspaper. The piece appeared on page one, illustrated by a drawing of a generic dark-haired lovely. It ran alongside an essay by Walter about inspiration, genius, and Jack Kerouac.
“Now I am a writer,” I told myself.
Walter must have stopped talking about leaving because Celestina stopped talking about him talking about leaving.
“I’m going to die soon,” she said now. “By this time next year, I’ll be dead. If not from illness, then from suicide.”
I murmured an expression of potential sorrow, keeping it brief. At the best of times, Celestina had not been someone who dealt in pleasantries. Her death wish, like her symptoms, deserved to be taken seriously.
Did I know of a painless, effective method? she asked.
The two suicides I’d been close to had involved tall buildings. No way was I going to recommend that.
“Have you googled?” I said stupidly.
“I want to hear what people have to say,” she pushed back, stressing the word ‘people.’ Oh yes, I thought, remembering why we had begun speaking—it was stories she wanted, not answers.
Casting about in memory, I came up with an incident concerning the mother-in-law of a friend. Faced with something agonizing, degenerative and incurable, she’d stopped eating and drinking and was gone within the week. Finding himself in similar circumstances a few years later, her widower had followed her lead.
Innocuous enough, as these things go, but I wondered nonetheless if it was right to answer the question at all. However, my little story of thirst and self-starvation seemed to provide some relief. It was simple, no supplies or preparations needed. Perhaps knowing she could easily take her life at any time would be the thing that kept her from doing it.
Our conversations tapered off after that, as if by tacit agreement. Although her illness had descended long after mine, I was falling behind. Sicker, sadder and worse off in every way—better to have a diagnosis than a husband, I sometimes thought during those years—she had outstripped me in some sort of long-distance sickness race that I only dimly understood. For me, death was neither an immediate prospect nor a solution. A distance opened out between us. Words and stories had failed me—or I, them.
I don’t think Celestina died within the year. If she had, I would certainly have received a postcard in the familiar hand that always reminds me of the era, years before she and I met, when I believed that dreams could cross easily over into waking, and that I could determine the order of time.
Writing about a proud, talented woman brought low by a disease she could not name, or perhaps more than one (flummoxed by her symptoms, as were the doctors, she’d often wondered if she had multiple illnesses), writing about someone who turned to me in desperation—I’m wondering now about the ethics of this. Celestina is revealed here in all her vulnerability; I reveal her. Myself, too, but for that I don’t need anybody’s permission. If I finish this story about how we took turns offering each other the ministry of presence, and if someone reads it, what end does that serve?
For years I thought of writing about Celestina, batting the idea away again and again. The project would be fraught with pitfalls and moral ambiguities, I knew. I sought solutions: If I fell out of touch with her, would it still be wrong? If she didn’t live, surely it wouldn’t be wrong. Stories jostle and seethe in the anteroom of my writing mind like a tangle of earthworms, and a hail of new ones pelts me every day. Every day’s events contain enough material for a book, or more than one, if you only pay attention. I’ve accumulated messy stacks of business cards over the last thirty years, each a window onto another world, even the ones from dentists and drycleaners. Each of those windows, plus time, equals a story. But my own condition is worsening, and this is the story I need to tell now.
At the time of our very last conversation, Celestina was still undiagnosed and untreated. She hadn’t gone on the Internet in months. It seemed that she’d almost made her peace with that, recognizing that the situation would likely never change.
When I think of picking up the phone now, my hand is stayed by the thought that if I were to speak to her again, I might be doing so not to give comfort or receive it, but in pursuit of more story, to find out how events unfolded, or did not.
Names have been changed here. Details have been changed—countries, languages. There is a composite character here—well okay, more than one. No research or reporting went into this story. Nothing has been fabricated, except a few things that are unimportant. There is nothing here, nothing, except what I remember, nothing, except—
Esther Lupescu is the pen name of an author whose work holds the Iowa Prize for Literary Nonfiction, a Kirkus Best Book award and a Notting Hill Essay Prize. She lives in the northeastern United States.