Living Well and Dying Well, Together

We create spaces of care, but it's difficult to keep them together in a world that tells you this is not allowed. We're all broken by this structure, which is why I want to get rid of it.

Transcribed from the 4 November 2017 episode of This is Hell! Radio (Chicago) and printed with permission. Edited for space and readability. Listen to the whole interview:

When we collectively grieve in ways that create deep, caring, empathetic communities of dignity, we’re challenging the structures that tell us we’re not dignified, we’re not worthy, we’re not each inherently worthwhile. And when we grieve together, we begin to see it as part of our struggle for a better world. The two go hand in hand.

Chuck Mertz: In death, we can find rebellion, even revolution. In death, we can find the new culture anarchists always seek but rarely find. Death can lead to the change we’ve all been waiting for. Here to explain, Cindy Milstein is editor of the collection of essays Rebellious Mourning: The Collective Work of Grief.

Welcome to This is Hell!, Cindy.

Cindy Milstein: Thanks, Chuck.

Mertz: Right at the beginning of your book, you quote Zapatista subcomandante Galeano, writing, “Your struggle is a crack in the wall of the system. Don’t allow Ayotzinapa to close up. Your children breathe through that crack, but so do the thousands of others who have disappeared across the world. So that the crack does not close up, so that the crack can deepen and expand, you’ll have in us Zapatistas a common struggle, one that transforms pain into rage, rage into rebellion, and rebellion into tomorrow.”

How much can the pain of grief from death radicalize us? Will the revolution be caused by grief?

Milstein: I want to make clear first of all that this book isn’t advocating death or loss or grief as an instrumental way towards revolution that we should increase or seek out. But at this moment, there is a deep and palpable sense of constant, grinding, brutal, structural loss that touches most of humanity, whether it’s from disappearances or death. You touch on it in your show’s title: this is hell. We’re living at a time when we’re asking the existential question of whether we’ll even be here as a species in ten or fifteen or twenty years or a lifetime from now.

The intensity of what we’re anticipatorily grieving is monumental right now. And there are already profound losses. The greatest displacement of humans in history is happening on this planet at this moment. More people are somewhere they don’t want to be, are ripped from the fabric of their communities and their lives and their homes. Displacement is a really deep form of loss and also does cause death. People die of the heartbreak.

We are experiencing profound forms of loss and mass death and grief and mourning, but (especially in this place called the United States) we’re told to either keep it private, individualize it, or try to pretend it’s not happening. Shove it away, be happy, be young, go on, pretend no one ever gets hurt or dies. But we should actually open up that space and allow ourselves to fully feel the myriad human emotions that come with loss. As humans, we are born into a world already knowing we will die. Loss and grief and pain aren’t avoidable, and in a way they are part of the beauty of the human condition.

This book explores the profound amount of loss that would not have to happen—the profound amount of death that could be avoided—if we were able to contest the structural forces that cause death: murder by police, or disappearances, or the disposability of humans because of robotics, all sorts of things. How does us opening ourselves up to the full range of who we are as humans actually contest those forms of loss?

We do that when we toss aside the fiction that loss is ever an individual phenomenon. If I got a phonecall right now telling me someone that I totally love had just died, you would hear my voice change, I would maybe start crying or sound shaky, and it would impact you instantly, and your listeners too. And then consider social circles radiating outwards: who else knows them, who else loves them? So of course every form of loss is a collective loss.

We should open ourselves up to that, acknowledge it, reach out to those around us who are sharing that loss and that grief, and figure out ways to collectively grapple with a full range of emotions. As an anarchist, I’m all about how we prefigure the things we want in the here and now, not waiting for some magical moment. How do we begin to act out the world and the values and the ethics and the practices we want in the here and now? If we collectively grieve in ways that create deep, caring, empathetic communities of dignity, we’re challenging the structures that tell us we’re not dignified, we’re not worthy, we’re not each inherently worthwhile. When we do that, when we grieve together, we also begin to see it as part of our struggle for a better world. The two seem to go hand in hand.

Someone writes a piece about Ayotzinapa within the collection. I personally heard some of the families speak on a tour. I was really struck by one of the parents. They said they had all come from very poor villages and they were so happy to have their children go to this school where they could maybe become teachers, and maybe have a better life, and most of their children were sending little bits of support back to their families. When their children were disappeared, they all just went to the school. They didn’t necessarily know each other, but they ended up having to stay in the school because they needed both material and, they realized, emotional support. And through them grieving together and supporting each other emotionally and mentally and materially, they also decided to struggle together.

Think of the photo montage they chose to make. At once they profoundly personalized the loss they were each experiencing, by each of them showing a picture of the child of theirs that was disappeared, and yet the photos are almost always shown together. So it’s not my loss, it’s the 43. And many people on the parents’ tour saw those photos and said, “That could have been my child. That could have been my grandchild.” So those 43 photos, shared by people who were also creating and sharing a space of grief together, went on to create a larger caring community of people who were able to experience and talk about and grapple with their own forms of pain and loss at the same time, and build a movement.

I had three people really close to me die in the past four years. People tell you to take time away and come back when you’re done, or go to a self-care retreat, or find a therapist. But for me, the times I felt like I was able to understand my losses and understand my grief was when I was with others, and we were having circles of care where we were all mutually caring for and listening to and hearing and experiencing all the range of emotions, from laughter to rage to tears to disbelief, as a group of people.

We need to de-commodify care. I don’t want a “caring economy.” I want care that we give to each other because we want to because we are human.

Collectively and honestly and openly sharing makes a profound difference—and that’s ultimately who we are as human beings. It’s sad to me that the times people show the most who they really are is when they are suddenly jolted by the death of someone they love, and they’re like, “Wow, I’m mortal, and there’s only so much time left, I should do what I want to do, and be who I want to be,” and there’s this window, a crack, where they open up and really become who they could and want to be, in the whole range of emotions.

Humans are being shut down, and we want to open up to all that we’re feeling, but it’s really interesting to watch people: a few weeks later they’ll clamp back up and be like, “I’ve got to get back to work, I’ve got to get back to life.” As if that isn’t part of their life!

The only reason we grieve losses is that we love something, and we miss something. So loss, as horrific as it is, shows us that we have the capacity to love. And love is part of why we struggle for a better world, I would hope. So if we lose something, we should mourn. We should grieve. And we should take the time and the space and do that with other people, because it’s an acknowledgment of how much we care.

Mertz: That cooperative, compassionate dignity, that capacity for love—why do we not offer that in life, but then as we get towards the end, we offer it in death?

At one point you talk about your father going into hospice and how you saw this amazing cooperative caring community working together. I couldn’t help but think: the entire time I’m on this planet, I’m hoping for this more caring, cooperative community of people to show compassion towards each other, to show dignity; you never get it, and then all of the sudden you’re deathly ill, your illness is terminal, and suddenly you get to experience it at the end of your life.

Why do we not offer that same kind of dignity of life…during life, instead of only at death?

Milstein: I live in the United States, so I’ll speak from there, because I don’t want to universalize this. In many places and cultures there are still more communal practices; people face the fact that they are mortal and face death in more profound communal ways than is happening here. There are several reasons it’s like that here in the United States; one enormous one is the origin story of this place, the rugged individual that forges ahead on their own, the “pull yourself up by the bootstraps” thing.

That story, whether we think we want to believe it or not, is profoundly woven in. Even for people who don’t want to believe it, there’s something about how that whole mythology is pounded into you. I’ve been really struck whenever I go outside the United States: often people will speak through the “we” first, and then the “I.” Here it’s almost always the “I” first and then the “we.” That’s a subtle thing, but it’s about needing to do everything on your own, including deal with losses. Trying to form community, trying to organize politically—I think that’s all so much harder here because people do often think, “Well, I’m not getting what I want, so I need to leave.” That’s one huge barrier both to grief and to organizing.

Capitalism is profoundly mature and deep here, and its values tell us that everything is a commodity, everything is instrumental, everything can be exchanged for something else. If you have a pet and it dies, you’ll often hear someone going, “Oh, well, you can get another cat.” People even say, when people have children who die, “I’m sure you can still have children.” There’s this disposability; “you can get something else.” And the way capitalism has structured the care and the grief industry also removes us from care, from life. Care and the medical industry are two of the still highly profitable, enormous-growth industries. Don’t take care of your own children, don’t take care of your own body, hire someone else, remove your own agency from care.

A huge underlying argument of this book is that we need to de-commodify care. I don’t want a “caring economy.” I want care that we give to each other because we want to because we are human. It’s deeply disturbing how much of our lives we literally farm out to other people, pay other people to take care of things. It has been only in the last couple of decades that people are being paid to stand at the front of a store and say hello to you when you walk in. There’s a death industry, a “care industry” that removes us from sociality.

Both my parents got sick on the same day, and both were clearly heading in a terminal direction, so I came back to take care of them. They had living wills making me technically the legal person to make decisions about them, so I was among hundreds of different doctors over the course of thirteen months. And none of them wanted to talk about death. None of them wanted to admit that my parents were dying. They didn’t want to look at them as human beings. They would come in and rush out, not making eye contact with them, much less me. I became very comfortable talking to them about death, but you could tell how disturbed they were. They would pull me out in the hall and get really anxious.

At one point, thankfully fairly early, a nurse pulled me aside and said, “Your dad is not going in a good direction. He’s dying. Why don’t you do this a beautiful way called hospice?” What hospice does is ask us to go back to other time periods when people had more intimate connections, familial friendships, community connections to death and dying. You allow people to have as good a life as they can, and when they can’t, you allow them to have as good a death as they can.

When my mom was in the hospital and I could tell she was about to die, I kept saying to the doctors, “Look at her face, you can tell she’s dying,” and they would say, “Oh, no, her chest sounds okay.” Finally, after a week, they weren’t combing her hair, they weren’t bathing her, they weren’t looking after her. I asked her if she wanted to go home, and she did, so I just said, “We’re going home. She’s going to die with dignity in hospice.” When I said that, within minutes someone came in and started combing her hair, they changed her hospital gown, they started calling her by her name.

And it struck me: why do we wait? What hospice asks us to do, with a group of people around loss, including the person who is dying, is to constantly think about how we can accentuate the quality of life at every moment for all of us who are experiencing the approaching loss, and how we can lessen pains that don’t have to be there—knowing that there will be pain that will have to be there, because someone is dying. It doesn’t try to stop grief. We create a care community to accentuate the quality of grief. And it lessens the pain for the person who is dying, either bodily pains or anything making them feel like they’re not being respected.

Capitalism is set up as a death machine. It destroys. Whether that’s ecology, whether that’s our bodies, or our communities. It’s set up for the production of death. Those of us who are struggling for a better world of care and dignity and mutualism and love are all about striving for the creation, the generation, the production of life.

I went through hospice with three people who I love, and watched all three of them die, and I was with them. It is utterly intimate and beautiful when someone allows you to be there with them as they are passing on. In each case, carers asked them what they wanted, as did I, and they articulated what they wanted, up until the end. With my mom it was things like, “I want my lipstick on,” or “I want to sit in my favorite chair.” Why not let someone do that? Why make them die a horrific death?

Why don’t we apply those values earlier? My values as an anarchist mean for me that our project should be one of collectively trying to make the world a freer, more mutualist, dignified, and quality place for each other, and at the same time trying to remove the forces that deny those things to us. We remove hierarchies in order to create a non-hierarchical, egalitarian, caring world.

Structures like capitalism sell us expensive health care and keep a body on life support. My dad was on life support. I should have put him in hospice earlier but for a variety of reasons I didn’t. At the place they warehoused him, the administrator was down the hall from my dad but never walked over, didn’t know his name, didn’t know any of the other hundred people there. They were literally like dead bodies. I should put quotation marks around the words “life support,” because it looked like it was a warehouse of dead bodies, being kept “alive” by machines. My dad was the most highly functioning. He could spell out words with a finger on a letter card, so he could communicate, but could not do any of his own bodily functions.

At one point the administrator admitted that each body equaled $36,000 in reimbursements, and when they went on Medicaid it dropped to like $20,000 or something. For her they were just tens of thousands of dollars on a thing called a bed. No one came to visit any of them. It was in Michigan; there are only two or three places you can put people when they’re on this type of life support, and they’re nowhere near where anyone lives. It was so disturbing to me, as a radical, to walk in there. It was a political question. This is not life. This is a space to keep bodies semi-alive so you can generate money for a large corporation.

Compare that to the minute I put my dad into hospice. He went to this beautiful residential hospice where you could see birds and flowers, and people treated him lovingly. It was absurdly nice. He was only conscious for about 24 hours, and then he slowly drifted towards death over the next seven days. We stayed in the room with him the whole time, for the whole week, and it was the most beautiful experience. At every moment, people were coming in and talking to him and treating him nice, and friends and family were visiting. Even when it seemed like he was asleep and drifting toward death—they say the hearing is the last to go, so we kept talking to him, and he had this look of being the most calm and happy he’d ever been in his whole life. It’s an odd thing to say, but it broke my heart that he had to experience nine months of hell, being kept alive on machines, before being taken off and having this incredible week at this beautiful place that looked like a vacation retreat center, where people were so good to each other, and good to us.

There’s this way we become humanized through the experience of hospice. But why wait until the end? As politicized human beings, we should think about what it would look like to consider all those around us at every moment and how we could together accentuate quality of life and lessen all the forms of loss that don’t have to happen, whether it’s murder by police or it’s disasters caused by climate change, or the range of horrible losses that we’re facing at this moment as human beings.

Mertz: You talk about putting on your “anarchist glasses,” and when you do, you can see how capitalism has played a role in the loss of many people’s lives. One way that you see it is in gentrification, living in San Francisco. For those people out there who don’t understand how capitalism can kill, how does gentrification kill in San Francisco?

Milstein: Unfortunately I don’t live there anymore; I’m a product of the eviction epidemic. But I did, and I did a lot of solidarity-not-charity eviction defense there. A group of people who were all facing eviction—or had been evicted or might be—got together; we would meet and talk about who’s being evicted and who needs support and what kind. It might be a demonstration in front of their landlord’s office or it might be something theatrical, or if they’re coming to throw someone out, we’d stand there and try not to let them. There is a whole range of things people do together.

We would usually go around at each meeting and ask how people were. When someone was about to be evicted, you could just see how tense they were. “I just got my eviction notice; I can’t breathe; I’m having trouble sleeping.” They would start telling you—they can’t not tell you, they’re so upset. So in a sense we became a grief group by default, because we would care for and listen to each other’s stories. Then we’d say, “Okay, what do you want us to do?” and we’d all help each other. There was this deep way people became connected to each other and cared about each other there.

There are many categories of people who have been highly targeted for eviction in San Francisco, but one in particular is people who have lived in their homes for fifty, sixty, seventy, eighty years. They have rents that are maybe four hundred a month because of rent control. One-bedroom apartments in San Francisco can go for more like four to five thousand dollars a month these days, so if someone is in an apartment paying four hundred a month and you own that building and you can rip it down and build luxury condos and each one can go for five thousand, you want to get that person out by any means necessary.

Really anything. Landlords would literally stalk you. They would send thugs to your house. They would let the entire house deteriorate. There were many arsons of buildings. There were several times where it was clear the police murdered people as forms of enticement for neighbors to self-evict. This happened. It’s an intense war zone. When the price of one single small room could go from four hundred to five thousand, it’s really sad what people who are making the mega dollars will do to get someone out.

About nine months ago there was a woman who was 99 who had lived in her home for most of her life, and had fought for about a year not to be evicted, and then she was, and within a week she died. This heartbreaking thing has happened many times in San Francisco.

How can we bear our losses better and give our lives meaning with each other by struggling to lessen those losses together, and produce life while we’re at it? Even if we only have ten years left on the planet, how can we make every minute count, make every minute have life for all of us so that we can live well and die well?

Certain losses are particularly profound. The loss of a home isn’t just a physical space. It’s the grocery you used to go to and the people you said hi to, or your mail carrier who you’ve gotten to know and the fabric of you friends around you and where you go to the doctor. It’s the entire fabric of how you understand yourself and your life. When you’ve lived somewhere that long and everything that has meant anything to you is ripped away from you, it does not only cause emotional suffering. Our minds and bodies are connected. The number of people in their eighties and nineties who die within a week or a month of being evicted is pretty remarkable. It is almost uncannily correlated.

In San Francisco, people would fight extra hard to keep people in their homes who had been there for most of their lives precisely because they know it is life and death. There was a previous example during the AIDS crisis in the Bay Area. Landlords tried to evict people back then because of homophobia and fear of AIDS. Many gay people, gay men especially, were evicted from their homes during the AIDS crisis. Fast forward to the current moment: those who had hung on, who were gay and living with AIDS, are experiencing another wave. Some people who survived the first wave of both AIDS and eviction were evicted the second time.

There’s a beautiful thinker, Silvia Federici, who writes a lot about care and the commons and what it would look like to think of the world as something in common to share, use, and enjoy together. I heard her give a talk once, and she really summed it up for me: capitalism, if you want to think about it as an overall system, is set up as a death machine. It destroys. Whether that’s ecology, whether that’s our bodies, our communities. It’s set up for the production of death. Even if it takes a while, that’s what it’s set up for. It rips things apart. It destroys. It takes away.

Those of us who are struggling for a better world of care and dignity and mutualism and love are all about striving for the creation, the generation, the production of life. Life for each other, life for the planet, life for things that are not human, and humans too. I really like that way of thinking. The only way to do that is together with other human beings. A newly birthed human has to be caught with hands and held and has to be taken care of. You can’t just set them down, because they won’t live that long without nourishment and interdependence. We need to continue that care, nurturing, and interdependence for the whole of our lives. We are social creatures. We depend on each other, on social relationships.

This book is about the production and generation of life, and life is also going to involve loss and grief; it’s about accentuating our social relationships around care, including those moments, and this moment in history. It’s one of those crucial turning point moments. I really love the title of your show; we are living in a world that feels like it’s hell. Most people, when you ask them how they are each day, want to say it feels like hell. I think it would be healthier if we just admitted it, and turned to each other and asked how we can make it feel a little less like that.

How can we bear our losses better and give our lives meaning with each other by struggling to lessen those losses together, and produce life while we’re at it? Even if we only have ten years left on the planet, how can we make every minute count, make every minute have life for all of us so that we can live well and die well? Hopefully we can lessen the losses. We don’t have to have as many people dying from the brutalism of evictions or police murders or all the sundry other things that are destroying us right now.

Mertz: You were seeking a new culture as an anarchist. You found a new culture in hospice. What explains why you can create a new culture in hospice but weren’t quite able to in anarchism?

Milstein: I have had moments in both. In hospice there is so much more intention. People are like, “This is what we’re here to do.” Speaking to anyone who does hospice, there’s this language they use. I feel like I’ve gotten to be a “death doula,” and I use the language now too. It is such an honor to have someone allow me into this space. To have someone let you be there…everyone talks about it being an honor to be there in a caring community.

As an anarchist, you’re trying to live this life that’s at cross purposes with everything in society. I have a critique of hierarchy, so it’s really hard to live in a world where everything around you, if you put on those anarchist glasses, is patriarchy, hetero-normativity, capitalism, statism, white supremacy—everywhere you look is at odds with the world you could imagine.

But what’s beautiful about it is that anarchists try hard to create these magical moments where, like in hospice, that happens. In hospice you come together and create this moment for a week or two weeks or four months while someone is dying, and then that community, too, dissipates. That’s what anarchists do. They come together and create magical moments, occupying squares and creating our own libraries and healthcare systems; Standing Rock was another moment where people—it wasn’t just anarchists—came together and self-organized and self-managed and cared for one another.

I’ve been part of many magical spaces like that. I was in Montreal during the student strike, which I write a lot about on my blog if you want to go back and read. For six months, people took over that city in the sense that everybody just decided to collectively make the city their own, and made art together and made poetry together, and took the streets each night. There was a profound sense of collective care and revolutionary love and beauty.

And then they dissipate. In this book, all the stories are bittersweet, and none of them have happy or “closure” endings. They have bittersweet endings. We create these spaces of care, and then it’s really difficult and messy to try to keep them together in a world that tells you this is not allowed, that crushes it with police or with the way we’re socialized. We’re all broken by this structure, which is why I want to get rid of it.

All these forces are telling us we’re wrong. For me, the project isn’t to hope. I do hope that this could be every moment of every day for the rest of humanity—but for me it’s more about how we continually create many more spaces of care and community, and keep them alive as long as we can. And when they get torn apart for a variety of reasons, whether that’s because someone dies or because our projects fall apart as radicals, how do we do the best we can to show there are beacons to come back to? And how do we figure out ways to grieve them well so that we’re stronger when we go on to the next one? In that bittersweetness, in the losses, in the grief, we’re giving meaning to the care we experience and trying to bring it onto the next one knowing that it’s possible now.

We’re constantly in this struggle between freedom and unfreedom. How do we accentuate freedoms and push away the unfreedoms? That’s an ongoing project of us continuing to practice care. We’ll always be a mess, but we should continue to struggle. That’s why I remain an anarchist. Anarchists, as messed up as we are (like all human beings), try again and again to create these communities of self-organization and mutuality and care and dignity and try to open up cracks like the Zapatistas talk about, to show people that it’s possible.

Mertz: Cindy, I really appreciate you being on the show.

Milstein: Thank you, I really appreciate talking with you.

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