A Woman’s Work: Till Death Do Us Part

Carolita Johnson considers the emotional and physical labor required of women as their loved ones die.

Carolita Johnson | Longreads | October 2019 | 26 minutes (6,450 words)

 

Death is a process I knew very little about until my life partner began dying. He and I had to learn everything while we went through the process together. I say “learn,” but at this point I’m not sure we learned anything. Sometimes I think Michael was the only one who learned anything real and true, as in Pete Townshend’s words in “The Seeker”:

I won’t get to get what I’m after, till the day I die.

He died three years ago, and this is the first time I’m writing about it in retrospect. I took notes during it all — the before, the during, the after — and I’m glad I did because I sometimes barely recognize the hand of the person who wrote them, much less remember much of what I wrote about. If there’s anything I’ve come to understand while reading these notes, it’s that dying isn’t just about the one person doing the dying. It’s an undertaking woven by and around many people, and this has a certain beauty.

In a couple, though, along with the unfathomable strengths it can prove, it also has the potential to expose deep, carefully camouflaged structural flaws in a relationship. It imposes financial considerations and logistical burdens, sometimes revealing unsuspected shabbiness; or worse, deliberate malice. For good or for bad, what a death unfurls in its wake will always surprise you.

The deaths that I’ve known so far all began with aging and illness. So, I won’t presume to understand death by any other cause, not by war, not by accident or any form of deliberate (first, second, or third party) intent. The deaths I’ve seen involve watching the body of someone I love get tired, begin to fall apart, stop working right, and finally begin to degrade, as they watch in helpless terror, into food for pathogens.

First my husband, then a couple years later, my dad.


My experience as a caregiver to Michael began earlier than I realized. When we met, I was 37 and he was 56, still climbing trees and playing softball with a cigarette dangling from his lips, but also the age at which his own father had died. From the moment Michael turned 56, he considered himself to be living on borrowed time, and from the moment we met, I considered myself to be sharing that precious time with him.

Seven years into our relationship, we moved in together and declared ourselves married. Two people devoted to each other should take care of each other, I thought, so I made Michael stop smoking as a condition of my being responsible for him.

I said:

“If you have a stroke or get lung cancer, it’s me who’ll be wiping your ass when you’re paralyzed or dying.”

This was a particularly frightening image for Michael, and effective, so I used it often, crude as it sounds. My apologies to the faint of heart.

I asked him to take better care of himself for both our sakes, saying, “I’ve seen it happen to other people: it starts with a knee injury or a broken rib or hip. You stop exercising because it hurts, you gain weight, you take meds for the pain, next thing you know, you’re out of shape and taking more meds for the side effects of the other meds you had to start taking because you got out of shape, and next you’ve got diabetes, cancer or a stroke, and then the bedpan days.”

I got life insurance and made him the beneficiary of it: he was an artist with a long career that could and might well end with a change of editorship at the publication that regularly published his cartoons, or the unforeseen drying up of desire for his work, or even just the end of his own ability to remain inspired and relevant. He’d need money to live without me if I were crushed beneath a falling asteroid. I was still blissfully dismissive of my own mortality and limited time on earth, and could only imagine falling asteroids stopping me, but I took very seriously my duties as a wife.

You never know!

It was ironic that, having once been a model and gotten used to (and insert here my long, weary eye roll) being valued as a thing of beauty, an easy inspirer of desire, and a source of possessive male pride, that I was more worried about my own body’s aging process than his, anticipating the day I’d be too old for him, an irony after having started out, on some levels, too young for him.

Michael himself had once told me he couldn’t find older women sexually attractive. He’d die (if he weren’t already dead) if he knew I would one day write about him saying that he was “a very tactile person” who liked “the feel of young flesh,” at a sushi restaurant in the East Village, in the course of describing a lifetime of infidelities. With this in mind, I had taken care to remind him before we moved in together that he’d left his wife when she was close to the age I’d shortly reach, for a 25-year-old who looked about 12.

I accepted that this could be our fate, too, no matter how he protested it would not. I would just enjoy us while I could, I thought. What’s that you say? Why, yes, I am currently working through this apparent lack of self-respect, psychologically and emotionally.

The first time I acknowledged Michael’s mortality to myself was one afternoon when he was almost 60, standing at 83rd and Broadway as we waited for a light to change. He bent down to adjust a shoelace, and as he got up, he groaned and said, “One ’a these days I’m going to bend over and never get back up.” My reaction was to find and take a course in CPR by the end of that week.

I am certified, in case you’re about to have a cardiovascular event.

At 68, though he still looked very fit, his body began to fall apart in ways that shocked me and turned my physical desire for him into fear and dread. That image from “The Shining,” where Jack Nicholson is sexily slow-dancing with a woman who morphs into a decaying corpse in his arms is an effective shorthand for how I felt about Michael’s body aging before my eyes. Kubrick knew the score, knew how to represent artistically what is real and true about love, fear, and mortality.

I thought about that image a lot in our last two years together. It’s a cruel image, and the real cruelty isn’t in the comparison of Michael to it, which I didn’t have to or particularly want to tell anyone about except to illustrate this: the cruelty resides first of all in the truth that image contains.

I felt compassion for Michael: compassion for his getting old, and for acutely being watched as he grew old, by me, who knew every inch of his body. I used to watch him with desire and awe. Now I watched him secretly as if we were both standing on a train platform, waiting together for a train that I knew I would not board with him, that I had no intention of boarding with him, that I’d even fight desperately not to board with him. He would die first, and I would survive, even if it killed me.

I think this is where the loneliness of dying begins.

When, at around 68, he finally did hurt his knee, I remember deliberately suppressing the memory of my speech about how “it starts with a knee injury.” From that point on, at softball games, he would go to bat while a younger person, usually someone’s young child, for fun, would be designated to run for him.

Once, while we made love, I looked up at his body and thought I was hallucinating: it looked like his skin was melting, like a candle. It was simply age; his skin had lost its elasticity, and was beginning to hang from him. It hadn’t been like that the last time we made love, at most a couple weeks earlier. It was unsettling, to say the least.

After the initial shock, and subsequently surviving some moments of inner turmoil over the course of a few more harrowing “date nights,” I remembered a passage from a late chapter of Lolita, where Humbert Humbert seeks out the married Lolita, her body deformed (in his perception) by pregnancy, her now “rope-veined hands” roughened by drudgery, the beauty that had once seemed transcendent about her youth smudged by the passage of time. He realizes he loves this Lolita, too. So it was, with me and this Michael.

Our last road trip was to Cape Cod, the same year that he hurt his knee. When we returned, he had a terrible bout of sciatica that we put down to his sitting down with his leg extended (to reach the gas pedal) for so long. But we soon observed that airplane flights, long car drives, train rides — all of these resulted, without fail, in six weeks of sciatica. His anticipatory anxiety over the guaranteed sciatica caused him to miss planes and cancel vacations, even jobs. I don’t drive, and this is not where I want to go into my reasons why. I mention the sciatica now as a cameo that will make an important reappearance later.

Michael’s last two years were a speeding up of his slowing down. At 68, he began to have the characteristic older man’s trouble of “not peeing like a racehorse anymore,” as he put it. He had once enjoyed making jokes about this, for example as he emerged from the men’s room at a Pete Seeger memorial after patiently waiting for his fellow aging “boomers” to pee, saying, “Sorry it took so long, baby. It was Flomax Central in there!” Now it was him. One afternoon he came to pick me up at the bus station and said, as I greeted him with a kiss: “We have to go to the ER.” He hadn’t been able to urinate at all, all day.

He was fitted with a catheter, which was emasculating enough, but the specter of prostate cancer also loomed. We followed the “watchful waiting” protocol, prostate cancer typically being either the very slow kind that doesn’t kill you till you’re very old (like, if some other age-related incident or disgruntled mistress doesn’t kill you first), or the aggressive, kill-you-fast kind. Michael had always been clear that he would never undergo chemotherapy, or any kind of treatments that would debilitate him. If he had the version of cancer that would kill him quickly, so be it, he said.

He was put on “Flomax” to restore his ability to urinate, but it made him dizzy and unable to work efficiently or drive responsibly. One of the side effects was apparently the “pre-diabetes” he came down with, not helped by living near a great source of delicious baked goods. It was a toss-up whether medication was improving his life: not having to wear a catheter was very important to him, but on meds he felt like crap all the time, was hard to get along with, and wasn’t doing his best work.

After six months of this constant drag on his energy and happiness, he was diagnosed with the aggressive kind of prostate cancer, stage 4. From this point onward, every moment in our lives revolved around his diagnosis, and everything we did about it was characterized by (and a response to) his terror, which was unrelenting.


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I was afraid to leave him alone, so I quit my day-job as a fit model, telling him the fashion industry was in a freefall and I’d have lost my job anyway, so he might not feel bad about it. It wasn’t entirely true; my private reasoning was that sooner or later I was going to have to change my life to exist with Michael in his old age, anyway. I was just doing so earlier than I’d expected. As for my cartooning and writing, all that creative energy was redirected into making attractive, hearty anti-cancer meals, and trying to manage Michael’s anxiety.

The hormone-suppressing meds he was on (his oncologist called them “testosterone destroyers” — they’d be followed by a round of “testosterone annihilators” in six months) caused him to become, basically, a menopausal woman. I, for one, related to what he was going through physically, because I was an actual menopausal woman at that time. But even if I could understand how sleep-deprivation from waking up drenched in sweat six times a night can cause moodiness and memory problems, how many times had I gone from being a robust, very-manly-man to a menopausal woman? My menopause had been Hell, but at least it was expected.

Once, arriving alone on an overnight trip to Manhattan for a job, I stopped at a juice bar to get something to have for my breakfast the next morning. Inside, I spotted a man chatting with his friend. He looked so familiar to me. I stared at him, and he turned and gave me a smile and, with his eyes, shot me a look that seemed even more familiar. I couldn’t help smiling back. It took me days to realize who he reminded me of. He looked like Michael, before Michael held nothing but fear in his eyes.

I remember with deep sadness that Michael’s “menopause” coinciding with mine served to rob us of the last form of physical intimacy we had left. I’m not referring to sex. Sex had been out of the question already for months, what with the catheter. Even without it, I had become too frightened by the cocktail of medications he was taking to allow him to pop a Viagra on top of it all. I kept imagining him having a heart attack, and his kids forever believing I’d killed him with my insatiable sexual desire. They probably couldn’t imagine the implications of the change in my relationship to his body when I went from lover to caregiver. Who ever imagines that until it happens to them?

We would try to spoon. But we’d immediately begin to overheat, be forced to separate, burning up, apologetic, anguished, covered in sweat, flipping the duvet to our feet, simultaneously or in turns. After a while, we just gave up trying.

He became forgetful, and would go into the bathroom to snap pictures of the various and frequent meds he had to take as they sat on his tongue, for the reassuring timestamp. The photos, which I found in his phone later, were hideous. After he died, I found his notepads obsessively inscribed with dates and times of every single time he took a pill. He became convinced he was experiencing Alzheimer’s symptoms and that his brain would never go back to normal. He was not reassured by my relating my own experiences with memory shortfalls during the exhaustion of menopause.

On top of the physical side effects, he felt paranoid and combative; he accused me of not loving him anymore, of thinking of him as “a ball and chain”… He looked at me with suspicion and resentment whenever I contradicted him or resisted his overwhelming obsessiveness, trying to preserve my own sanity.

I wondered if Michael would ever be himself again, or if he’d stay as he was now, or, worse, become even more of a stranger to both of us. If he survived cancer and this treatment, who would he be? I was constantly resisting a sense of dread that the way things were now foretold our lives forever. Tender humor had been the way we dealt with his anxieties about love, about desire, and about our relationship over the prior twelve years. But his sense of humor was lost now. Without it, we were alone with our pain and fear. His doctors had told us to expect mood swings and lowered libido, but not this.

After a conflict with his oncologist over the proposed duration of the disabling meds he was on, fueled by more paranoia, Michael became convinced he’d been “fired” by his oncologist and thrown to the dogs. Something was wrong with his last shot of Lupron, he said. He felt “wrong.”

In spite of this, he was determined to go to his daughter’s wedding in the Italian countryside, a place in their family lore that was known as the last place they had been a happy family before Michael ruined everything with his (finally evident) infidelity. I obviously had no place in this picture, and was frankly too tired to travel. I begged him not to go. There was another ceremony in Chicago afterwards that we could get to more easily. Why not go to that one?

It was a long, arduous trip with multiple changes. I predicted that he would come back from Italy with sciatica, and then he’d refuse to go get his MRI and everything would be delayed and things would go wrong. I hoped with me not going, he might do as he’d done for years and back out at the last moment. But he went.

While he was in Italy, apparently he became emotionally involved with a family friend who also attended the wedding. He had already been texting and phoning her regularly unbeknownst to me, while I chopped organic vegetables in the kitchen or looked up cancer treatments online. Once, as I let tears of exhaustion roll down my nose while slicing radishes into beautiful blades of color to top his dinner, he put me on the phone with her: “I hope you realize how lucky you are to have a man like Michael…” she began.

I didn’t hear the rest. I went back to making dinner and forgot about her till she showed up in our home while he died, and then forgot about her again till I found their nauseatingly lovey-dovey text correspondence and voicemails on his phone three years later.

Illness doesn’t turn people into better versions of themselves. Michael had been prone to emotional and/or sexual escape before, and now that I was his caregiver, and not his super-cool combination mistress/wife, there was a void to be filled. I’d always known, from observing other couples who had gone through a major illness, that our relationship would suffer. I knew it wouldn’t be a surprise if we didn’t survive it at all, knowing Michael, knowing humans.

He came back from Italy with sciatica.

Sitting at our kitchen table, he said, “What if this isn’t sciatica, and the cancer is in my bones now?”

I said, “First of all, there’s no reason to believe that. You’ve been responding well to the treatment. And, secondly, if it were the cancer having spread to your bones, you’re screwed, because you don’t want to do chemo, and chemo would be your only option. So stop worrying. It’s got to be sciatica.”

But the sciatica, which we’d gotten used to waiting out as it slowly improved, only got worse. He took so many Vicodin that I was afraid he’d overdose. They didn’t seem to work at all: he’d just lie in bed groaning with pain. I moved to the guest room to sleep, the door open in case he called for me. I could still hear him groaning all night from there.

The next day, on the last afternoon we spent alone in our own home, he dropped something on the floor, bent down to pick it up, and could not get up. He was suspended in pain, pulled downwards, and I said:

“You have to go to the ER. There’s something wrong.”

He said, “If I go to the ER now, I’ll never get out.”

I said, “If you can’t get up when you fall down, what will I do? I’m not big enough to pick you up!

He said, “I won’t fall down again.”

I said, “You will! You will fall down again! You will, and I won’t be able to pick you up,” and I ran into the bathroom, slammed the door, and tried to cry without making noise. Sitting on the edge of the bathtub I texted his ex-wife in desperation to see if she had any advice, being his age, being more experienced with illness, maybe she knew how to persuade him better than I did. For a hopeful moment I imagined us two women who loved Michael bonding while taking care of him together. I have no use for pride. But she didn’t have anything useful to say.

That evening, I put $600 in twenty dollar bills into a Priority Mail envelope to a cannabis oil dealer in Florida, having given up trying to make enough of it myself with the limited tools and time at my disposal. Michael’s oncologist called me as I crossed the street from the post office, to say that his MRI had revealed a tumor in his hip whose symptoms had, ironically, perfectly mimicked the sciatica he had been expecting on the trip home from Italy — a tumor that grew so quickly it had broken his hip as he lay in agonizing pain in our bed. He instructed me to get Michael to the ER in Manhattan. I called Michael and told him the doctor’s orders. He complied but on the condition that our close friend from Brooklyn drive us there. Our friend, a saint, drove the 100 miles to Kingston, where we lived, to pick us up.

It was in the hospital that I began to understand just how very insular our couplehood had been. We began to take hits from the world he had escaped to me from. First, his ex-wife arrived, placed herself between me and my husband, bent over (butt in my face), and kissed him on the lips as if to say, “Okay! Now all this Carolita nonsense is over, Michael’s real wife is here!”

Being an emotionally damaged person who survives on delayed reactions followed by private conversations with bathroom mirrors, I registered only mild bemusement, and made harem jokes for the nurses’ sakes. I found out later that he told a friend how hard it was on him to have her there, but he, too, never let it show.

Then his kids arrived and Michael, out of fear of offending them, made them his healthcare proxies, over me, and they began disputing his DNR choice, and his reluctance to undergo chemotherapy, even though he had always been clear on this subject. If his written directive weren’t enough, one night in the hospital, delirious on morphine or fentanyl, he sat up in the dark, pulling at his IV and said, as I tried to push him back down into bed:

“Don’t you see that beautiful white horse out there? It’s in pain and we need to go outside and put an end to its suffering. It’s on my chest and you need to let it go.”

Michael was my beautiful white horse.

For a while he entertained his children’s hopes of him undergoing chemotherapy. For this, he’d need to put on weight, so, doubtful as I was that he’d really go through with it, my brother and I went shopping and made one of his favorite dishes at a friend’s house: spaghetti bolognese. Sitting on the edge of his bed, he took a bite with his eyes closed, threw his head back and exclaimed, “Oh, yummy!”

But the next day, he took only one bite, enjoyed the flavor for a moment, then quietly spit it out. I knew what this meant. Later that day he declined further treatment, saying he’d rather shoot himself in the head than continue with all the procedures and tests he was being put through. I walked outside and wandered up Lexington Avenue, looking at people, having very bitter, very involuntary thoughts toward them, saying in my mind to everyone who I passed, things like:

“What are you smiling about?”

You’re going to die. And you. And you, too.”

“You look so fucking cocky now; but you’re going to die.”

You’re going to die. And you, too.

When I got back, his kids pitched the idea of taking him “home” to his ex-wife’s barn in the country, where, they said, he could die surrounded by beauty. I could then, they said, go back to work at the cafe across the Hudson River where I had kept a few shifts at after I had quit my real, much more lucrative day job. That way, they reasoned — apparently not realizing I’d already given away these pocket-money shifts to be able to stay by Michael’s side at the hospital — I’d be able to pay the rent on the house we rented from his daughter. And then this: if I needed a ride to see my husband, someone would gladly come get me, anytime. The barn was 40 minutes away from our place.

The oddity of such an arrangement didn’t seem to register with them. And in my disarray, I found it impossible to react rationally. This is how strangely death shuffles like a deck of cards the emotions and sensibilities of the people surrounding the dying person.

In the end, Michael, perhaps to save me from having to go to bat against his kids for the cause, told a mutual friend that he wanted to come home with me, to die surrounded by his art and his loved ones (his exact words), and this was what I arranged, with the help of my brother and a few friends from the cafe.

The family friend (the lovey-dovey message one) came to the house to offer to help. Being human, I responded to her obsequiousness icily, of course. Michael heard me, and we fought about it. When I, unable to bear seeing him angry at me on his deathbed, promised to be “nice” to this woman, he surely knew he was a goner, is all I can say: I don’t believe I ever made such a concession to him in the 14 years I’d known him. I wanted to joke about it, but he was done with laughter. I wanted to joke about the fact that he didn’t even think it was funny anymore, but who needs meta at life’s end?

I had always yielded to his family whenever they presented themselves in our lives because, I felt, I’d had him all to myself all the rest of the time. Alone, we belonged to each other and no one else. I had been his secret from his family for seven years while he let them entertain the possibility that he might “come back,” and then I was his safe place, his haven. No one else knew the Michael I knew. Now, his extended family overran and inhabited our home en masse, at least 10 people in the house at any given moment, never giving us a moment of privacy.

At first, I thought the crowded house was the reason I didn’t crawl into bed with him to provide him some comfort by the time all the tubes and wires were removed. But on further thought, that wasn’t it. Had I become conditioned not to disturb him, first in his/our “menopause,” and then later, at the hospital, when the slightest jostle of his multiple IV’s and sensors had caused alarms to sound? No one dared touch him then.

As I dug into my memories of us, I recognized a flaw in the dynamic of our relationship that I’d failed to address, a flaw which dated back to the beginning of our relationship, and which defined our relationship. I had learned, rebuffed again and again by his “claustrophobic” reactions, never to approach him, waiting only till he asked for my love. At the time, it even seemed appropriate, feminine, for me not to question this passivity. Or so I told myself.

While he lay dying, I was afraid to approach him again. Perhaps he would not have rebuffed me again. But then again, he might have. Maybe, even in extremis, he still didn’t want his family to see us fully committed to each other, fully in love. I never took the risk, so I’ll never know.

Instead, I stuck to our old script, and stepped back in the presence of his family. I began washing and folding all his clothes, harvesting and getting rid of what seemed like hundreds of earplugs scattered all over the house the way a pet’s hair collects in the crevices of a home. He spent his last two years in earplugs, making me wonder, in retrospect, if hating to hear the world around you is the first sign that you’re dying of something.

I washed our sheets, put away his set of towels. I arranged his shoes in the closet. Folded his sweaters, checked all his pockets. I carefully rolled up his socks and handkerchiefs. I remembered all the times I’d thought that if I could only die after all the housework, I’d never have to clean or do laundry again. This was the last time for Michael. I spent my time alone in the basement at the washing machine and dryer, or in our bedroom at his dresser, trying to see through my tears.

The worst thing that happened — and I mean the worst thing besides the cancer and the agonizing pain Michael suffered — was that on the last day that he was conscious and able to talk, his kids tried to walk him to the front porch, and, extremely irritated by this, he began babbling about needing to go to 4th Avenue. He referred to a green book, or maybe a blue book — actually, who the fuck cares now? But we tried, me and his son and daughter, to decrypt his babbling as they held him standing up near his bed, a position that seemed useless and cruel, but I had become accustomed to never crossing Michael’s kids, for his sake.

Hoping to make this end I tried to ask what he meant. “Do you mean the art store?” is what I think I asked. He stopped to turn to me, barely seeing me, and snapped angrily, “Shut up!” before continuing.

“Shut up,” was the one thing we’d agreed never to say to each other in anger, and we’d succeeded in keeping that promise for 14 years. I ran upstairs. For the next hour I stood in our bedroom at his dresser, pretending to arrange all the shirts I’d bought him over the years, which I couldn’t see through my tears. Tears filled the lenses of my glasses, as I looked down, and Michael’s son passed by and said something like, “You know that’s not him talking. It’s the cancer.” I don’t know if I replied.

When I came back downstairs, he was in a coma.

Yes, my husband’s last words to me were, “Shut up!” I don’t know what to tell you. You can try to never, ever go to bed angry, and remember to say “I love you” every morning and every night, knowing those might be the last words you say to the one(s) you love, but nothing can stop shit like that from happening. The only thing that can stop it from happening is to never love someone, and good luck with that!

That night, I came downstairs to his bedside. It was his children’s turn to watch over him. They were asleep, or so I hoped. I put my head near his, and whispered that I was proud of him, that he had done everything right. And then I asked, “Did I do it all wrong?” He breathed a deep sigh that felt as if he were trying to reach out to me through it.

His breathing, over the next day, became heavy and loud, with a machine-like determination. This phase of dying seemed to go on forever, although it was only two days. When he finally died, he was tiny, a husk, everything used up in the body’s effort to extinguish itself. I thought he must weigh nothing.

I could have written more about the actual caregiving logistics, the practical side of it all. But writing about death as an emotional process involving everyone surrounding Michael has meant recognizing something even more universal and human through the bias of our story that I haven’t seen addressed before: illness and death not only didn’t change anything about the dynamics of our relationship (and everyone else’s), but actually revealed the failures of it even more starkly.

We had turned our fault lines into exercises of style, saying “Hey, look at us, we make everyone else look like they’re doing it wrong!” And it’s not as if it weren’t fun, either: we used our respective damage as accessories, as stilts and party tricks and flowers in our buttonholes. With all our props stripped away we became strangers to each other. He died with all his lies patently visible but yet unquestioned by his family, and I remained for a good long time the same damaged person but without the perfect dance partner to make it look funny and easy and glamorous. I was left with a lot of work to do on myself.

Why would anyone want to know this? Why wouldn’t I want to continue being revered by everyone who knows me as a widow, a proven caregiver (a good woman!), or keep the legend of our relationship gilded and ready for nostalgic consumption? Because I can’t live in this space. It hurts me, even though I make constant jokes about it for everyone’s benefit. My jokes have been warning shots, perhaps only to myself, but I remember them all. I remember the uncomfortable laughter of those who I subjected to them. I’m done with all that.

I don’t know if I coined this phrase, but I’ve learned to tell myself this: the price of love is loss. Couples: one of you is going to die first, or leave first, but either way, someone is going to be left holding the bag. You may be the one with the story to tell. You may be the one who will learn to let go, cry for a year or two, and wake up one day, ready, unbelievably, for more.

Read the rest of Carolita Johnson’s illustrated series, “A Woman’s Work,” here.

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Carolita Johnson is a writer, storyteller and cartoonist who contributes regularly to the New Yorker.

Editor: Sari Botton