Featured Stories

Comfort Measures

After watching my mother die, I read her notebooks

Aaron Bady
Feb 27, 2018 · 24 min read

We use euphemisms to talk about death, clichés worn smooth with use. We say things like “passed away” or “gone home” or “departed” or “at peace,” all to make it sound like dying is something common and easy. But these phrases translate the strangest thing a person will ever do — the strangest thing, perhaps, besides giving birth or being born — into something that seems like the easiest and simplest thing in the world. Dying isn’t easy or simple. Dying is hard work.

It took my mother about 36 hours to die, or maybe five hours, or maybe three weeks, depending on how you measure the progression. None of it was easy. In the days after, when we were struggling for something to say, we would say, “At least she didn’t suffer much,” and this was true; an instant without agony is a blessing. But the phrase smooths out the stomach-churning abruptness of that brutal and baffling descent she took from health and well-being into absence. The cancer spread so fast, starting in her endometrial lining, moving to her lungs, and then to her brain and her liver and to other parts of her body, which—at that point—were no longer worth keeping track of. You don’t worry about small things when the universe has contracted to only a single very big thing, and at the end, it was the only thing.

I can track her decline in the spiral notebooks that she used to record her medications and appointments and bodily functions, alongside notes she wrote to herself and to my father and me, reminders of the tasks she was afraid we would forget. At first, the handwriting is her own, and then it gets shakier, spidery, familiar but distressed; then it becomes a series of carefully printed capital letters. Then the spelling suffers; sentences come apart, crossed out, and my mother — a woman with multiple degrees — struggles to write a word like “schema.” After diminishing to broken phrases, her writing is replaced with mine and my father’s. And then the record stops, as there is nothing left to record.

On my parents’ calendar, there’s a succession of doctor and hospital appointments, lab tests and other medical reminders; you can track how quickly she got sick by their sudden appearance and proliferation. Previously, there had been two major dates marked for her: when her vacation began and when it ended. My mother has been refusing to retire for years, always on the edge of withdrawing from the environmental group she founded and directed for close to three decades; for most of my adult life, she has been trying to take more time off, trying to carve away a life for herself that didn’t involve the environmental movement. Until she got sick, she never could, and every vacation and sabbatical and taking of time off was only temporary, with work waiting on the horizon. Until she got sick again, and she suddenly found she could make the decision. She decided to retire.

On that calendar, there’s a day that had been marked “Di back work.” She crossed it out and wrote “off work forever.”

In the hospital, we learned that “comfort measures” are when you stop measuring. When the outcome is no longer in doubt, when the only question is how rough the passage will be, everything changes. They turn off the beeping machines and unplug the drips. They stop writing down numbers, stop recording and tracking and measuring. Life becomes unmeasurable when it’s coming to an end. Why bother with her bladder infection? Or the pneumonia? Why worry about her blood pressure or fever? These were no longer the questions we needed answers to.

When the oncologist came back with the results from the last CAT scan, he didn’t tell me what he knew or show me the data. “What do you understand about what is happening?” he asked, gently, my terror and confusion reflected in his eyes. I stuttered my way through what I knew: that my mother’s cancer was incurable. That she was dying. That we were close to the end. When I stopped talking, he nodded, sadly, and explained that because there was no treatment for a cancer like this — so fast and vicious that there was nothing to measure, or test, or check — the only things that remained were pain and time. My mother was no longer a mystery to be unlocked or a problem to be solved. All the biopsies and blood tests and medications and lab results and surgical scrapes and appointments and specialists, her giant mountain of data to sort through, it was all over now. Now there was only a simple and unerring progression, a brutally constricted timeline of breathing and blood that converged on a single destination. The oncologist agreed with the hospice nurse: It was time.

She was transferred to a hospice house, and she died the same day. There, we asked questions about dying, for the first time, the only questions left to ask. What it would look like, what could happen, how it would occur, and what we could do? We wanted to know, because we knew nothing, and because they knew everything. How will we know it’s happening? What should we look for? How can we help?

The room had a porch with a view of the river. The hospice staff had seen it all before: It only goes one way. Sometimes babies are born fast, and sometimes they’re born slow, a hospice nurse told us; the same is true of death: Sometimes it happens faster, and sometimes it takes a while. But that’s all. You can be there, and you can wait. But there is nothing you can really do. They are doing it all themselves.

My mother grew up on a dairy farm and spent her childhood — the oldest of eight — struggling to escape from her rowdy, noisy, rambunctious family. At her funeral, her brothers and sisters told stories about togetherness, about playing and fights and pranks and arguments. She loved her family; we visited often, and my mother worked hard to get along with every one of her siblings. But in her latter years, when my mother remembered her childhood, it was always the outdoor peace of the farm that she talked about, the quiet pastures away from the house and the other kids, the fields and the silence of animals.

At the funeral, I asked one of her younger sisters what she remembered about growing up with my mother, but my aunt just laughed. “Oh, not much,” she said. “She was the oldest, so by the time I came along, she was halfway out the door.” She recalled my mother wanting to go to dances, to social events; my mother snorting loudly and stomping up the stairs when she wasn’t allowed to go. And then she stopped and recalled a time the two of them were walking along the farthest edges of the farm, a teenager in high school and a six-year-old, in silence. My mom turned to her sister and said, suddenly, “You know, you’re my favorite,” she said.

My mother loved her family, and she had more than one favorite. But she had been a kid, and she had wanted to get away from the crowd and the noise of a large family in one house. So she did. First she fled into nature and then into the world, into school and boys, and then farther and farther away, to the University of Wisconsin, where she got involved with anti-war protests — was “baptized with tear gas,” she once said — and then to New Jersey, where she finished all she cared to of a PhD in psychology, where she met my father, and where she conceived a son. And then, when the city choked them in, when they were tired of the noise and confusion and crowding of New Jersey, they found their way to Appalachia, where I grew up amid rolling green hills that sang with birds and insects and silence.

My mother’s cancer turned out to be the kind of cancer that kills you very fast. If they had diagnosed it immediately, she might have lived to undergo a chemotherapy that could have prolonged her life a little. But only a little, and perhaps not at all. Perhaps that would have been much worse. Her last days might have been more uncomfortable, the good fights of the past buried beneath an uglier, unwinnable struggle. Perhaps we wouldn’t, now, be able to say that “at least she didn’t suffer that much.”

The oncologists are good at “perhaps,” because they have data and studies and lab results to guide them in navigating the variation of human life and death. But what is their data worth when such a cancer rears up and tears you off your feet? That burns you out like a brush fire; that pulls you under like tidal wave? The hurricane that hit her was not something you could prepare for; nothing anyone did or didn’t do ever mattered. There was no perhaps about what it did to her. It killed her, and quickly.

It had been different the last two times. A dozen years ago, her lymphoma had gone undiagnosed for over a year; she had survived because it was the kind of cancer that she could survive, and after several bouts of chemotherapy, the doctors had declared her cured. She had lung cancer, too — a very small one — but it was surgically treated and never came back. They were strange cancers, and strangely overlapped: It had taken years to diagnose the lymphoma because it repeatedly went dormant and disappeared, rendering the biopsies ambiguous and inconclusive. Only after diagnosing the lung cancer — in my mother, a nonsmoker — did they pin down the lymphoma as well. But it was strange. Who catches two different kinds of cancer at once? Who lives with a deadly lymphoma for years and lives through it? Who wakes up after 18 months of chemotherapy and declares that she feels better than she has in half a decade?

My mother, apparently. But the false confidence this gave us — she’s a tough lady, my father kept saying; she has a good track record of not dying from cancer, I repeatedly told people — made us believe she could fight longer than she did. One of the doctors told us that the one thing she had going for her was that she was Dianne Bady, and when we talked with her about her chances — the handful of times she did — she repeated that phrase with all the gravity of a proverb. It gave us all something to say when people “hoped for the best” or told us they had her in their thoughts or any of the other clichés that we say because you have to say something.

But the real story was simple. My mother’s third cancer killed her in a matter of weeks, less than two months after we learned she was sick, and there was never anything anyone could have done.

I’ve stopped reading my mother’s last notebooks. I know that her thoughts were interrupted by illness and painkillers, and that her last days at home were focused on eating, drinking, breathing, and flowers. These are things I know. The details and measurements of her body’s decline no longer interest me.

Instead, I’ve been reading her dream journals, the dozens of notebooks that date back to the mid-1980s, when she was about the age that I am now. She believed in her dreams, and she tried to understand them. Whether it was Jungian psychology, Christianity, or pagan spirituality — all rivers she drew water from — she hoped that what was missing in her life, or was blocked or confused, could be cleared through her dreams. And so that’s what I’m left with, the last place I can find her voice: her dreams.

When I was a kid, I knew that my mother often had difficulty sleeping. That her legs jerked. That she flailed and muttered and yelled. She would start off nights in the bed, and when her legs got bad, she would shift to the floor. Sleeping was hard work for her. But I never thought much about it; she was Mother, this was how she was, and I had bigger problems, being six, being 10, being a teenager. I thought it was vaguely embarrassing that she sometimes slept on the floor, when I thought about it, which I mostly didn’t.

When we first moved to West Virginia, it was the peace of the Wisconsin prairie that she missed, the beautiful endless rolling farmland and big-skied oceanic horizon. She felt cramped by the mountains, overshadowed and claustrophobic. With time, she would grow to love the landscape, would come to love it as her second home. But in the beginning, the mountains were strange, ugly, and scary. She felt threatened; she felt stuck. And so, her mind roamed. She dreamed.

In her journal, now, I read her struggling to understand why: to put into words what her dreams, and her body, were telling her. What was wrong? What was blocked? What was it she could see in her dreams that her opened eyes could not? And so she wrote and she wrote and she wrote. In her dreams, everything ran together; in her dreams, her blockages and fears and opacities could be thrown open. In her dreams, everything was everything; A = A, not an irrelevant and superfluous equation, but a simple and fundamental reality. The circuits were unbroken. The channels were unblocked. The universe flowed.

Euphemisms open up a great blankness around death, a space of careful obscurity. You can spend your whole life, if you try, never looking at the thing itself. You can know about the people who have “passed on,” who “rest in peace,” and you can feel the absence of “the departed,” and you can mourn their loss. But the euphemisms peel away quickly in the face of the thing itself. Dying is not peaceful; dying is hard fucking work. Dying is active. We leave this world with the same movement as we came into it, and just as there’s no wrong way to be born — as the hospice nurse told us — there’s no wrong way to die. There’s only the struggle of getting there. There are only varying levels of comfort and fear. There is only the time it takes to do it. There is what you leave behind, and who you leave it with.

My mother began her last day sleeping peacefully. There had been some mismatches between her pain and her medication level in the previous days — West Virginia doctors are slow to prescribe powerful painkillers until they know they have to, and her cancer had progressed so much faster than anyone had realized — so she had spent the previous day fighting with her fear and her confusion and her discomfort with her breathing mask. But when I arrived in the ICU around daybreak, of her final day, she was quiet, gentle, herself. She seemed like she was floating, bobbing in a still pool. She was snoring. We told each other, laughing, that this is just how Dianne sleeps, remembering better times, when her epic snoring was a comfortable embarrassment, a funny little tease. Our concern over her breathing — the oxygen level, her blood absorption, the depth and rate of her breaths — gave way to memories of when she simply snored because she was Dianne. She seemed peaceful, dreaming.

Over the course of that day, the current picked up, and you could see her fighting as she was pulled downstream. Her breathing became labored, and her snores turned to gasping. Her throat rattled and wheezed. Her temperature rose, and then shot up. Her blood pressure increased, and her heart rate accelerated. My mother always slept on her back, but they put her on her side — to keep her airway open — and in those last hours, her eyes hung partially open. She didn’t seem like she was sleeping, because she wasn’t; she didn’t seem like anything we had seen in her before, because she wasn’t. Her body was changing. Something was happening.

My mother spent her life fighting cancer. She founded an organization that worked to stop what would have been the largest pulp and paper mill on the continent — a monstrosity that would have used an outdated chlorine-bleaching process and contaminated the Ohio River with dioxin, one of the most potent carcinogens humanity has invented. It would have cut down the trees and transformed the landscape far beyond recognition. That pulp mill was never built.

My mother didn’t do it alone, of course; it was her ability not to do it alone that made the impossible possible. But a small group of citizens defied some of the most powerful corporations in the world and some of the most corrupt governmental officials you can imagine. Without my mother, they probably wouldn’t have. They fought other cancers: They worked for increased regulatory control of rogue oil refineries, forcing enforcement agencies to do their job; they pushed back, successfully, against a proposed refinery and toxic waste landfill that would leaked the whole nation’s toxins into the water and the air of a single, impoverished region. The heavy metals that are churned up when mountaintop-removal coal mining overturns the hills and dumps them into the rivers and streams — that leak into the watershed and into drinking water and into people — there are fewer of them in people’s bodies because of all the coal mining permits that were denied or never taken out in the first place. Mountaintop-removal mining has always been as cheap as the lives of poor Appalachians, but the lawsuits and outcry — and, eventually, reluctant enforcement of the law — made it more expensive, and rarer.

Her accomplishments can be measured by what is absent. There is no pulp mill in Apple Grove. There is no BASF refinery in a low-income community near Huntington. There are mountaintop mines that never happened. And whether they know it or not, the people of this region breathe easier and drink cleaner water because of the life my mother lived and the work she did. There are cancers whose absence no one will know to thank her for.

That my mother died from cancer, a disease she spent her life fighting, is a coincidence. And so is the fact that cancer rates leap up when a community’s water is polluted with selenium. It’s a coincidence that so many people get sick when you fill their environment with industrial runoff, that communities next to mountaintop mines have ludicrously high disease rates. But if you study what happens when you put poison in your body, when you learn that it tends to coincide with cancer — and other illnesses—that coincidence becomes something we call data. You can measure and record and predict. And on the basis of that data and measurement, you can make choices.

My mom chose to fight cancer. My mom spent her life saying no to cancer. My mother died from cancer. What am I to make of that coincidence?

My father is a scientist, a multipurpose skeptic; my mother was a believer in miracles and signs, a person who had visions and carefully tracked her dreams. A few months before she died, a cerulean warbler flew up to the sliding glass door she was sitting at, watching her garden, her daylilies, her hasta. It flew up to her and stayed for a few minutes. She took a picture of it and emailed it to me with an excitement I didn’t understand at the time.

Literally in front of my feet while I was in recliner! I never thought I’d see one in my whole life, for it to come right here is astonishing!

She forwarded me an email from a birder friend, who had written: “How ironic that the lady who fights so hard for the environment gets a personal visit from the bird that is the poster bird against mountaintop removal.”

In an email to other members of OVEC — on which she cc’d me — she declared, “After our sometimes sombre [sic] staff mtg yesterday, I am taking this for an amazing GOOD sign! We will prevail! OR, at least, keep things from getting as bad as they would otherwise!”

My father is a skeptic, and my mother was a believer. My father would say, yes, sometimes things like that happen. And my mother would also say, yes, they sure do.

She had visions. Not always, not often, but she saw things and had mystical experiences. Ten days before she died, when we were alone, she made a point of telling me about some of the things she had experienced. Some of the stories she had told me before, but I recorded her, because I could tell from the way she announced that she wanted to tell me about “some experiences she had” that this was no idle bedside conversation. She didn’t want to die, of course, but she wanted me to understand that she wasn’t afraid of what would come next. She believed that something would. She believed that the universe was larger than our ability to comprehend it.

One of her stories was about going to sleep in a car with a date, after she’d been locked out of her dorm, and waking up to find the car in a very different place. They had been worried that someone would see them, there in the car, and there was a house just at the edge of the horizon, with a light on. As innocent as it had been — and when I teased her, she insisted with a laugh that she had been a “good girl, in those days” — they knew that anyone who saw them would assume the worst. And so they worried about that house; they discussed whether anyone in that house could see them and what they would do if someone came out.

In the morning, there was no house. The car was somewhere else. They had not moved; they had moved. Shaking with terror, they drove away.

You can bend over backwards to explain how it really happened — how the house that they could see from the car disappeared, how the roads rearranged themselves around them — but you have to start by deciding that’s what you’re going to do. You have to believe that what happened could be explained away as nothing. That was something she didn’t believe. And neither did the person in the car; years later, they both remembered, and both knew that whatever it was that happened had happened.

Her visions went just a step beyond what a skeptical person — like my father or me, or the scientist in my mother — could explain. What she saw, what she heard, what she felt, it can’t quite have been real. Not quite. Of course, people hallucinate, and the mind plays tricks on us; my mother nearly finished a PhD in psychology, and she knew all about that. It might, in fact, have been the original reason she looked to science for an explanation. But science wasn’t enough. And so, after she left graduate school, she would look to religion and to dream analysis, and to neo-pagan spirituality, and to anything else that might help her understand.

My mother started keeping her journals when she found herself idle, when she was lonely and had nothing to do. I didn’t know this at the time, of course; I was six. I had just begun to go to school. In the morning, my father would drive me to the bus stop, and then he would drive to work. My mom was left behind, locked in the strange valleys that the strange people around her called “hollers.” It’s my home, the place where the trees and creeks and sky look the way they are supposed to. It’s the place where my heart rests.

When we first moved there, it wasn’t hers, not yet. And when I went to school and when my father went to his job, she was left behind, uneasy and claustrophobic. When she left graduate school, my father had a job, and so did she: a baby, who they named Aaron, who absorbed every minute of time she could give. But then Aaron went to school, began making friends, began not to need her so much. And while her husband had a job, and co-workers, and was settling in, she would wake up in the mornings, after they left, and wonder where she was. She would walk the roads of the strange place she found herself trapped in, along the tiny little roads that curved along the bottoms of the hollers, spaces where a tiny creek had dug out a little flat land, carving out patches of homesteads and just enough space for a road, over the thousands (or millions) of years, time beyond counting. My mother would walk these roads, wondering where she was, where she was going.

One day, she was walking along a rare wide-open stretch of road, and she saw a man in the distance, walking toward her. He was dressed strangely: an old-fashioned hat, a long beard, clothes that marked him as a foreigner. He wasn’t from here, she thought. They walked toward each other, closer, closer, and then they passed each other, not saying a word. What a strange man, she thought, and a minute later, she looked back at him. But he was gone. She was alone.

Perhaps he had never been there; perhaps she had imagined him. There was nowhere he could have gone in the handful of seconds after they passed each other; he had simply disappeared, leaving her wondering what she had seen.

When my father returned home, in the evening, from a long day of teaching science, my mother told him what she had seen. He looked like Rip Van Winkle or something, she told him, like someone from colonial days. “Oh,” my father said. “It’s you. You feel like the world has moved on, and you’ve been left behind.”

That death happens is the main thing we know about it. It happens. We can live our lives pretending it doesn’t, and perhaps this is the only way to live. But for hospice nurses, who see death every day — whose life is a sequence of death after death after death — they achieve a kind of comfort with its simple regularity. For all its variation, for all the different ways it can happen, it mostly happens in more or less the same way: The deceasing goes into a deeper and deeper coma, their blood flow contracts to the most crucial regions — leaving fingers and toes and knees to darken and mottle — and then breath becomes irregular, and then it stops. And that’s all.

There are measures, if you’re measuring, but death is what happens after the measurements stop. Over and over, that is what happens. That is what happened to my mother. This is how we die. And when we asked the nurse what would happen, what to expect, this is what she told us. It’s shockingly easy. It’s stunningly simple.

The problem is not that death is too terrifying to look at directly, or that we use euphemisms to escape a reality we fear to understand. The problem is that death is too simple to be interesting. Death is too easy and straightforward to explain something as mysterious and unknowable as life. What has my mother’s death to tell me about the life she lived, and left behind? There is nothing in her notebooks of pain and painkillers that tells me what I have lost. Her death tells me nothing about her dreams.

When I was younger, I resented my mom for her work. We fought, in the way parents and children fight, but part of it was that she was drawn to do something that I didn’t understand, something that wasn’t me. I was jealous of the work she had found to do, the organization she founded and led and built. Who are these people to you, I wanted to know. What does it matter; why do you care? It seemed selfish of her to be so busy. Having given me so many years, I demanded more; I wanted her there, always, waiting for me, even when I spent my days away from her.

I wanted to know that when I called her, she’d answer. I still do.

People sometimes need permission to leave, the hospice nurse told us. They need to know that it’s time, that they can finally stop fighting and let themselves be carried away. You have to tell them, if you can, that all the nagging details and worries and concerns will all been taken care of. You have to tell them what they need to hear: that you will carry their burdens from here. You have to tell them that it will be okay. They are ready to go, she explained, but it’s hard. They need your help.

I told my mother that I would take care of my father, that he would take care of Holly and Zoe, her dog and her cat. Her daylilies we would distribute among friends and family. Her work we would all carry on, we all said. I love you, I told her. I am so proud of you. I am so proud of you. But it’s time for you to go. It’s time for you to stop fighting. It’s time to retire.

In the day before she died, before she lost consciousness, before she began her final descent, my mother mainly wanted two things. She wanted the oxygen mask taken off her face — “better breathing” she implored, sometimes “better breathing now” — and because her mouth was so dry, she demanded water. The mask pushes oxygen into the body, aggressively, and while it gets your numbers up, the nurse told us that it can feel like choking. It also dries out your mouth. Because we had to take the mask partially off to let her drink from her straw — or, when she choked, to moisten the inside of her mouth with wet sponges — we spent her last conscious hours that day trying to prevent her from getting what she wanted, or giving it to her only briefly; you can’t take off your mask, we told her, because you need it to breathe. You can’t drink water from the straw, because you will choke. But the mask wasn’t enough breathing, and the sponges weren’t enough water. She was unhappy. She was frustrated. She was angry.

It’s easy to explain why my mother died demanding water and air. She was thirsty. Her lungs were dying, and she felt like she was choking. There is nothing easier to explain than the fundamentals to which her body was reduced. But the fact that she died as she lived — demanding air to breathe and water to drink — is the kind of truth we tell ourselves in dreams, the kind of truth so self-evident that when you see it, you suddenly see nothing else. It’s why our waking minds build walls or put on masks, I think; it’s why we open our eyes and close our minds to something as fundamental as the fact that there is nothing more important than water to drink and air to breath. She was doing the thing that came most naturally to her, her whole life. She was fighting cancer and demanding clean air and water. It’s so obvious, it’s breathtaking.

Our waking minds can see things like jobs and economy and money and development and be satisfied with their simplicity. In our dreams — I believe, as my mother taught me — we can tell the whole messy and interconnected truth. In our dreams, we can see the flow of reality, the way everything is connected to everything else; if our waking eyes see objects and people, separated in space, the “yes and” of dreams tells the truth: that we all breathe the same air and drink the same water. It’s too obvious and true to remember when we wake.

In her last days, as my mother was mostly underwater, she was being carried away by a fast-flowing dream, submerged in a world of double meanings. When she demanded — as I was told she did, before I arrived — “more morning,” was she asking that we open the window shades more, to increase the light that was just beginning to break through the windows? Did she want the day to begin faster? Or did she mean “more mourning,” in some sense too obscure for my waking mind to comprehend? Did she think she was already dead and wanted us to mourn?

Probably the answer is yes. I don’t know what she meant, but she certainly did. She wasn’t confused. She was certain. She was ready to go, much readier than we were.

I have learned from her that “death” is the word too simple to be true, a word that covers over everything else, like a prayer shroud. “Death” is the euphemism, the word that closes eyes. Death is a clinical measure, the moment between one state of being and its absence, an arbitrary marker that can feel like distance and separation. But there’s a river running between those hills. And life is the thing that flows beyond death, that makes meaning out of absence; life is the thing that never stops moving, that never stops until it reaches the ocean.

In her life, a lot of people tried to tell her where she was wrong, where she had misunderstood, where her demands and her complaints and her angry denunciations were misguided. West Virginia doesn’t need air and water, she was told. It needs jobs and economy! In her death, we also had the urge to tell her what she needed, to explain that she needed the mask on, and that the water would choke her (or anything else that we might know better about). But she won that argument, in the end, as she won so many. We took the mask off and she drank.

Does my mother rest in peace? I don’t know. I don’t know what peace is. But I’m comfortable knowing that she did know, and that whatever there is to know, now, she does. I don’t share my mother’s certainty, her peace of mind; I don’t have her dreams, only her notebooks. I am alive. I am awake. But as I read her journals, as her voice carries me away, across the years to a time when she was the age that I am now, it comes to me that her passage into death was exactly like this, a passage into dreams, into the flow she describes and longed for, into a movement more profound than anything my mind, still awake, can understand. There was no rest, no peace, and no quietude in her passing. But I can also know that the stream didn’t just take her; I can know that my mother’s eyes began opening, in her final hours, as her sleep became a dream. I know that there is something in her life that continues. That there is something in my mother that swims.

Aaron Bady

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