Writers write about illness. Of course they do, as they should. Usually their own, sometimes that of others, often their mothers’. They write about poverty—usually that of others, rarely their own, unless safely in the past. (I should say here, aspirationally in the past). Through their empathetic words of witness, they are present to those who are suffering. Unless that person is a fellow writer. A fellow writer who becomes sick and poor is a problem; a useless ally, a burden, a terrifying Ghost of Christmas Yet to Come.
Writers, if there is any chance at all you might one day become sick or poor, make sure you have friends other than writers.
Also, writers have independent personalities. They might be “community”-oriented in terms of being part of a writing “community,” even activist on behalf of a community based in identity, but not always community-oriented in terms of actual other people who are needy, frail, and irritating. They can be thorny, eccentric, prickly, bitingly irreverent, alienating, self-absorbed, what we sometimes call “fiercely” independent. Not necessarily practical. They can be proud. And, when sick or poor, ashamed. Not unlike the rest of humanity, but maybe a bit more so.
Writers, if there is any chance at all you might one day become sick or poor, make sure you have people in your life before whom you will never be ashamed.
The thing about the literary community in New York is that, perhaps of course, it is not a community. But once upon a time, pre-COVID, it sometimes felt like one. It accepted and even valued oddballs. It was like a church that demanded only that you believe in words, if not their power then their ultimate value, where rituals of readings and launch parties and prize ceremonies provided regular opportunities to affirm and celebrate that belief. You saw the same people over the seasons, the years, the decades, you actually liked many of them, and they started to feel like a kind of family. If not a family, then a community, at least. Certainly more than a professional association. Not merely that.
“Whatever happened to so and so?” is something writers dread hearing about themselves. The fear of it sustains free content—keep your names in print, lest someone ask, “Whatever happened to…?” In New York, there were people you always saw at literary events, until you didn’t, and you didn’t for a while, and then you thought, “Whatever happened to….?” Some were big personalities, big glamorous presences, and then they were not, and it was as if they fell through a hole in the floor of the literary universe.
Writers are sensitive; writers are afraid. Those among you who have not yet struck the golden bell, keep the day job.Post-COVID, who knows? Those with country homes spent months or years there, and even now, with fewer requirements or opportunities to interact “in person,” have a different center of gravity. Some moved permanently to other parts of the country, never to return. Others struggled with illness or long illness or even died. Will we even notice, as the parties start again, who’s missing?
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I have my eye on one missing person, who had been missing, in fact, for many years pre-COVID: a funny, glamorous, beautiful African-American writer I first met sitting next to Walter Mosley at some literary event in the 90s. She’d won a state arts award and then a fellowship to a famous arts center on Cape Cod; she lived a few years in the Catskills then went off to Europe with her writer-boyfriend for a prestigious academy stay that became years of expatriate adventure.
But her fiction wasn’t getting published. I’m not sure how much it was being sent out. Then she and the longtime boyfriend split up, and she came home, sick. She had multiple sclerosis. Dizzy spells kept her from taking the subway or getting a regular day job. Its effects on her vision had her writing in 20-point type. But she kept writing, completing four manuscripts, sending them to agents.
While she was abroad, America had intensified its flight from any dream of egalitarianism, the writing world had become ever more winner-take-all, more self-obsessed. Book advances had become ever more improbable gambles for a few, well below a living wage for the rest. The pressure was on productivity, having your name out there. She had basically already been forgotten.
Writers, hold on to the day job, I want to say, hoping for a lesson here. Maintain your network of contacts. Those of us in publishing, rich as we are in networks, always think that knowing someone will fix something. We know people with power and influence, and are quick to think, who do we know who can help?
But I knew another writer-editor-artist in Brooklyn who held on to her day-job until, after a couple of decades, she was laid off. She freelanced and taught and held on to a contact list that would have filled an old-school rolodex the size of a football. And then she got very sick.
“This happens to all of us,” the taxi-driver said. God bless that man. How does our community value his art, of patience, of understanding?She tried to activate that contact list—which contained many of the high and mighty of the literary world and probably could have been sold for some money—with a mass email when she was being evicted. It came across as desperate, taboo, an embarrassing cry for help. She had been an independent, eccentric (see list above) character; she could be generous or abrasive; most on that massive contact list must have just shuddered briefly in pity; very few responded.
And her disease was rare. There was no community there. So many writer friends (she had so many of them!) apologized for not coming to visit her in the hospital, during her many long blood transfusions—they “couldn’t take hospitals,” they found it “too difficult” or “painful,” she said. During the AIDS pandemic, potent new communities—in which activism found intimate expression in love, in necessary and unglamorous caretaking—were born. In the decades since, it seemed, there was ever more money in New York and less love. That kind of network of caretaking withered away.
Has it reemerged with long COVID? I haven’t heard. In any case, the writer with the rare disease found a church community, became Born Again—shocking, indeed Beyond the Pale, for most of her silent network. Outside the so-called literary “community,” the pastor and members of the church expressed love for her, in her weakness, illness, and unemployment. A couple of true friends remained there for her till the end. And the illness was relatively brief and severe; it unhoused her, so to speak, before the eviction did.
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Unlike her, my glamorous, independent, eccentric friend had probably never really had a network—she claims she is “anti-social”—and tended to misplace her friends like sets of keys, or alienate them somehow. Like many writers, she is a proud loner. And judgmental. And it is not irrelevant that she is Black. Family could have been there for her, but none of her three siblings made it past midlife: two died of diabetes, one of AIDS (long after medications were available), deaths obviously disproportionate to people of color. Her first thought when she needed help was not about people she knew.
After her first hospitalization, and MS diagnosis, she moved in with her father, a retired landscaper in the Bronx. Not many people knew—she was ashamed that the neighborhood was too “hood.” Maybe also ashamed that she was sick, and unpublished. Really, for a proud woman from the working class with just the bare bones of a high school education, who’d escaped her upbringing for a life of literary glamor in Manhattan and Europe, this is already too many reasons to put your head down.
Literary philanthropists fund prizes and fellowships to give young writers hope of a career; they’re not there to support apartments for writers whose careers flounder, who are sick, whose “promise” remains unfulfilled.On disability, under her father’s roof, she kept writing, proud that the MS could not take that away from her. Her family did not always understand why she didn’t get a real job, though she had dizzy spells, problems with balance, didn’t risk the subway. But writing was her true work, and the novel was coming together. Another novel. A young adult book. A memoir.
A bit of an old-fashioned girl, a Luddite, a little bit of a snob, she used the internet only for email, never explored assistive technologies or social media—or maybe, cognitive challenges of MS were already making it difficult to transition to new ways of doing things. She didn’t have a blog (it would have been fabulous), she hated the idea of online dating.
But would a Twitter following have found her a New York apartment, when rents doubled in her working-class neighborhood of the Bronx? Stripped floors, exposed brick walls, granite countertops and new buildings with rooftop healthclubs had arrived (searchable on real estate sites where one could filter for any amenity except wheelchair accessibility). Her father refused to pay more rent in absence of repairs; they were evicted.
During the six-month grace period, she called agency after agency, organization after organization. I called some too, came to understand that despite dozens of organizations in NYC funded to prevent homelessness, none could actually provide accessible apartments for disabled people who were not drug-addicted, pregnant, suffering from mental illness or AIDs.
It also turned out that she was scrambling numbers and couldn’t always manipulate her phone—maybe that was why certain callbacks didn’t come. All these calls she’d been placing to agencies, did they realize how much she was struggling? That she was not just physically but increasingly cognitively disabled? That she was too proud—a writer, a loner—to admit it?
I wrote the deputy mayor of New York City, who happened to be the husband of an author, and another publishing contact, a disability activist who knew the regional head of AARP; they couldn’t help. I brought over some applications for senior housing—hundreds or perhaps thousands or tens of thousands of people on the waitlists—and discovered that she could no longer really hold a pen or pencil to fill out an application.
But would a Twitter following have found her a New York apartment, when rents doubled in her working-class neighborhood of the Bronx?Real help would be someone who could offer a ground floor or elevator-accessible apartment, and a geriatric care manager to supervise the home care aides for which she would be eligible in New York City (but not elsewhere in the country). That is, the kind of help that should be available to all in such a situation, but that only serious money can buy.
Literary philanthropists fund prizes and fellowships to give young writers hope of a career; they’re not there to support apartments for writers whose careers flounder, who are sick, whose “promise” remains unfulfilled.
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We went to look at an apartment in an elevator building nearby. It was a bad MS day, but she was determined. Her step-brother carried her down the stairs while a taxi driver waited, without the meter on, with astonishing patience, “What are we supposed to have patience for, if not for this? We must have time for this,” he said; a recent immigrant, he clearly hadn’t been in this hurry-up country very long. He still had the values of another place.
After she struggled into and out of the car and, with the walker, over the curb and up the crazy one-step building stoop to the heavy iron-decorated door of the possible new home, we saw that she’d have to climb a flight of lobby stairs to reach the elevator. (This is what counts as an “elevator building” in New York.).
Fortunately the kind taxi-driver had not gone far, and tried valiantly to help get her in and out of the car and back up her own building’s stairs, so awkwardly she shook us off, and crawled. “This happens to all of us,” the taxi-driver said. God bless that man. How does our community value his art, of patience, of understanding?
During the first night in the homeless shelter, after little sleep the night before—sitting up in a chair in the empty apartment, while her father and brother brought their belongings to storage—and waiting outside the intake office from 4am to be at the head of the line, and a stressed day of more waiting and bureaucracy and not drinking anything but coffee—that first night in the shelter when she got up to use the bathroom, she saw something move on the floor, trying to swat it with her shoe, fell, and could not get up.
In the ER, where she lay in a gurney in the hallway awaiting one of the curtained bays, I could see the young white doctor not seeing her, seeing her instead as “another” Black homeless woman, asking a question about drug use or addiction. Not seeing my glamorous bitingly-irreverent proud funny and fiercely independent writer friend. (I am sick to remember this.)
The first apartment the placement staff showed her 84-year-old father, with his recent hip replacement, was up a set of stairs. (Did they look at the intake forms it had taken so many hours to process?) The next two were in bad neighborhoods, with addicts on the block. Months passed. His daughter the writer was at least getting care in one hospital, and then another, and then physical therapy in a nursing home in the East Bronx.
When the 90-day Medicaid limit on rehab ran out, she was shifted over to long-term stay—still funny, still irreverent, still believing something good is about to happen, still writing. She was always happy when she was writing. She asked me how to apply for a MacArthur Award.
A year and ten days after the eviction, a few days after her 65th birthday, the nursing home was closed to visitors. Automated messages came to my phone. “While HIPAA regulations prevent us from giving any details about our residents, we wish to keep you informed. A patient returned to us from the hospital has tested positive for COVID-19. We are following all safety protocols and have designated a separate wing of the facility for the care of COVID-19 patients. Know that the safety of your loved one is our first priority and have a good day.”
Soon, there were more cases. I tried to reassure her that, at least, being in a nursing home meant she was first in line for the vaccine. I got a robocall asking for caregiver permission. Yet I was not her caregiver, just her friend! She is a capable adult, I told someone, she can speak for herself. When the vaccinators came around, however, she was sure to tell them she had multiple sclerosis, a pre-existing condition. They wrote down that she denied the vaccine. They never explained or returned.
Months after vaccinations had begun, she was rushed into a hospital at midnight, with COVID. When I was able to talk with her, she was drifting through her past. Her book was about to come out! She described the book published 30 years before. Her phone, her shoes, and all her contacts disappeared for good, on the way to the hospital.
After COVID, there was a spell in the post-COVID ward of “The Plaza”—the Plaza!—and then a transfer to a not-for-profit home closer to me—wildly understaffed in the new crisis of labor shortage, traumatized by pandemic losses. She lost so much strength during the lockdown (when nursing home patients were confined to their rooms if not their beds and most could not access physical therapy) that it takes a lift to get her from bed to wheelchair.
Her extraordinary spirit rallies me when I really have nothing to complain about. She recounts stories of her family from the memoir-with-recipes she continues to write—even though, as I slowly began to realize, she is writing in her head, as she can no longer type. In denial myself, I spent many hours in several failed attempts to find the right replacement for her laptop charger.
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Writers will write a great deal about the past few years and what they have meant for our sense of the fragility of the body, for the necessity of a social safety net, for our sense that We’re All in This Together. The truth of the matter, as everyone knows, is that “This” is not remotely the same for all of us. Wealth and poverty and long-term illness divides the fate of writers just as it does everyone else.
Writers, those of you who have won the lottery of great success, please consider, instead of prizes and fellowships to feed the hopes of more writers, a vast fund to aid those who have slipped off the literary map. (Not the pittance of short-term assistance that PEN offers a small number of members.)
Or if you wish to commit to young talent, commit for life. (You have a responsibility when you tell people they can and should be writers!) Establish group homes for writers who can no longer live on their own. If the Church can support group homes for elderly clerics; why shouldn’t the literary world support group homes for writers, who have likewise devoted their lives to a higher calling? What about a mutual aid organization in which young writers would visit, read and talk to, and learn from their comrades in nursing homes—those they hope never to see as peers?
Writers are sensitive; writers are afraid. Those among you who have not yet struck the golden bell, keep the day job. Take care of your health insurance. Loner or not, be generous with your family and friends and hold them tight, as many of them as you can. Are we, or are we not, All in This Together?
