Recently, the popular Deepak Chopra quote, “If you obsess over whether you are making the right decision, you are basically assuming that the universe will reward you for one thing and punish you for another,” has been appearing across my social-media feeds. It’s a comforting thought that evaluates our choices without issuing a reward or judgment. The quote’s popularity also suggests that many people need more reassurance now than ever before.
Doulas—individual caregivers that have been rising in popularity since the 1960s—are conduits of that guidance and validation. “Doula” is a title first coined during the home birth movement by anthropologist Dana Raphael, who derived it from the modern Greek word for “servant-woman,” and today, doulas continue to thrive in the space between institutionalized health care and alternative medicine, where practitioners provide support, education, and companionship to clients during times of high stress. Doulas typically work with pregnant people, but their work has expanded to include end-of-life care as well.
While doula training has not been standardized in the United States, certifying organizations like Doulas of North America (DONA) have a well-established set of standards and ethics that serve as the basis for many birth-doula training programs. The International End-of-Life Doula Association (INELDA) certifies those who want to work with the dying. Currently, New York-based artist Marne Lucas is in the process of becoming a certified death doula, and her October 2018 art show, Bardo∞Project, focused on the doula work she’s undertaken over the past two years, in which she collaborated with three other artists who were dying. The resulting show became an “ongoing exploration of creativity as a form of spiritual end-of-life care, illuminating the positive effects of art as mind and body are integrated; coupled with relics from those journeys.”
For the past two decades, Lucas’s photography and video work has focused on universal experiences, including birth, sexuality, and aging. Her recent focus on dying is an extension of this work. In our interview, she discusses establishing a creative legacy, the challenges of creating and showing work about death, and what it will take to change the aesthetics of end-of-life care.
Did working on the Bardo∞Project convince you to pursue training to become an end-of-life doula?
Yeah, my peer group is mostly a lot of artists, musicians, [and] writers, so my idea was to collaborate with dying artists. I went to a bunch of hospice places in Oregon and New York City, and nobody wanted me to collaborate with their patients. They were just like, No way! I didn’t know what an end-of-life doula was. It was just an intuitive thing I wanted to do like six years ago—and no one would let me near their patients.
Then, my best friend Chris Brunkhart, a photographer from my hometown of Portland who was living in New York City, was suddenly diagnosed with Stage IV colon cancer. He was the one that delivered the news, like, “Well, the bad news is I’m dying of cancer; I have like a year or two left. The good news is I’m going to be your first collaborator.” He took it upon himself to give me that gift, and I spent 16 months going back and forth between New York and Oregon because he was in New York when he got sick and then he went home to Oregon. I collaborated with him until the end of his life, figuring out how can we make his legacy project happen. That’s how it got started.
It was in that process that I started doing research on end-of-life doulas and I realized I was [already] doing that work with [Chris]. I didn’t know what it was called. I also, strangely, was a participant on three births in the last four years and I acted as doula this year for my best friends who are photographers. I filmed a live hospital birth for my infrared video “Incident Energy.” It’s a 20-minute black-and-white thermal image video, and I used Butoh dancers instead of actors because they’re so good at conveying human emotions. The end of the film is all about death. I think being at those births made me realize it’s the exact same thing as dying. Of course, we see it as this uplifting, optimistic event because it’s a new life, but I realized it’s exactly the same thing as death.
Well, every birth is a death. It’s coming. We get to have both experiences.
Yes, we start dying as soon as we’re born.
What a gift your friend gave you.
Absolutely, and he was a very private person. It was at a lot of personal cost to me to stop working and travel all the time to be with him. He passed away January 3, exactly three years ago, and I had to immediately go to my Arts/Industry [residency] at the John Michael Kohler Arts Center in Sheboygan, Wisconsin. I made the first sculptures about Bardo∞Project that were based on collaborating with him. I went immediately from this intense process with him to being in a snowy landscape in the Midwest for four months, away from my friends, family, and partner, and just living in a factory and learning all new processes. It was sort of like grief camp—industrial grief camp.
What are you observing when the dying are creating art?
Chris Brunkhart could not really address with me, his family, or his husband [how he wanted to die]. Did he want hospice? I mean, he was 47. He just couldn’t really embrace that. His way of handling it was like, “I’m going to make art every day.” As they were taking him to the hospital he was like, grabbing all his camera gear and camera bag and was like, “No, I have to keep shooting.”
His death really freed him up from any sort of insecurities about his skills as an artist. He had been a really famous snowboard photographer in the ’90s and then battled drug and alcohol issues and was also in the closet and kind of battled all of that and came out on top. He had a couple of really incredible years when he got to live in New York City with his husband and was just starting to be who he was as an artist and then he got this diagnosis. But it allowed him to be experimental. He got to meet all his idols. He got to take a class [with] Mary Ellen Mark. She absolutely loved his work and invited him to come to Iceland to do a summer class with her.
We [went] to Iceland after Mark died of cancer. This was his honeymoon time and I was like, “What are you going to do about Iceland?” He was like, “I’m still going to Iceland because I still have things to learn from her.” So I accompanied him and his husband as their doula and just drove them all over Iceland so he could make his last body of landscape photographs. He was terribly ill while this was going on; it was very complicated. It was incredibly powerful to see someone so unwell totally determined to make a new body of work. That’s where I sort of thought about the value of doing legacy work with people.
What does it mean to have a creative legacy? It seems to articulate an unknown fear many people have, not just artists. What does that mean to you? How do you approach that?
I feel like this project is my legacy. It sums up all my skills and interests somehow. I don’t have kids. I don’t have a degree. I’m self-taught. I’m not married. I don’t own a house. There’s a lot of things culturally that are seen as valuable landmarks and I don’t participate in that. I think before I arrived at this project I had some anxiety about what I am really doing. Am I leaving anything of value behind? Am I contributing to our culture? I think I am fortunate to have figured this out, but when I am working with patients and collaborators, it seems like there is a lot of anxiety about, “I didn’t do enough or I wasn’t good at anything.”
I interview them and that’s kind of end-of-life doula work—to interview them and find out what they were good at. It can be really simple like, “What were you good at collecting? Or, what kind of community service did you do?” And that gives you a sense of peace of tying up some of your spiritual loose ends. The other thing I noticed through this project was that I didn’t grow up with organized religion and a lot of my collaborators didn’t grow up with that either, so there is no spiritual practice to fall back on. That’s been interesting too because that almost creates more anxiety. I think people who have faith have a community and a framework. Younger artists with terminal illnesses don’t [always] have that. I feel like this project of doing creative legacy work is a positive step toward finding something to make peace with. I’m just starting to get a handle on where faith and spirituality fit into my project. I’m learning it as I go; I don’t feel like I’m there yet.
I think creating a creative legacy is so powerful, even for people who don’t consider themselves artists.
Yeah, you don’t have to be an artist to create creative legacy work. Your family members can get together with the dying person, collect family recipes, and maybe have it printed and bound. You don’t have to be a fabulous artist. It can be something really simple that family members can remember that person by and that also the dying person can participate in and dictate how it goes. Dying [people] need to be given more agency and survivors need to have more optimal participation.
Dying people need to be given more agency.
How has being a death doula changed your art practice?
I’m finding it hard to carve out creative time on my own because this is a lot to manage. I collaborated with three people back-to-back. My friend Joe Heaps Nelson had been living in New York City, [went] to Boston for care for his brain tumor, and passed away in Des Moines, Iowa, so I have been flying all over the place, really being available to these people, and trying to fit in my own practice. Making this legacy work is really hard because my collaborators’ health is declining and I’m at the mercy of their schedules and how well or unwell they feel. It’s been hard to keep a really good studio practice. It is very rewarding, it’s a lot to manage, and sometimes I wonder, Is this me avoiding my studio practice? But I’m a highly collaborative person, so I don’t see it as a direct conflict.
You want people to “enjoy visual beauty while engaging with mortality.” In thinking about the art that is being made by people who are really facing death in a powerful way, I wonder if beauty takes on a new meaning here. How would you define beauty in this sense?
That is such a good question! It’s hard to define beauty; it’s so subjective. I think beauty is a valid pursuit—just like nature. I feel like unique beauty is in tandem with nature. Beauty and creativity is as important as nature, and for other people it would be as important as spirituality. It’s not food and shelter, but we kind of have no culture without them.
Do you intend for Bardo to be ongoing?
Yes, it’s ongoing. I am going to be doing more doula training because I want to be certified through the INELDA. My practice hours have been on hold because of this project. I’ll start doing a bunch of my contact hours, which will be interesting because this will be providing end-of-life services with total strangers and I’ve been working with close friends. I’m really curious how that is going to play itself out and if I’m going to be able to offer my services as an option for people who want to participate.
I’ll switch gears and do that for three or four months, but I’m totally open to collaborating with other artists. It has been a solid three years of collaborating with dying friends, so I think I might step back a little bit and write about these experiences. I feel like there is a lot I need to process and I really should just take a little break and examine that whole process.
You said on social media that people weren’t responding as much to your death work.
That was a little surprising. I know death is not everyone’s cup of tea and that I tend to be more comfortable with it than most people. But I have a really vibrant community in New York that I’ve been a part of for 13 years and I support everybody. I really didn’t see it coming that people would just not show up. I had an opening; I had a talk; and I was part of a big Re-Imagine group of events—there were 350 events around the city—during the last week of my show. I got to meet a lot of strangers; even people who knew the artists very well didn’t show up. I was definitely bothered by that. You don’t have to love the work specifically, but it’s important to support your peers. We’re all being vulnerable and putting ourselves out there. I was really surprised by my peers’ hesitance and putting their heads in the sand. I would have understood if people were like “Hey, I just can’t handle it, I’m not going to be there.” But instead people just did a lot of liking and didn’t show up. I don’t consider that participating. It’s very passive. I don’t know how much of that is people getting more into Instagram and social media and thinking, “Oh yeah, I saw the show, I saw the work.” I am not sure how much of that is hesitance about death, not wanting to confront their own mortality, and thinking, “It’s just going to be depressing.”
It sort of makes me think: What if this was someone’s funeral? Do people avoid it the same way?
Right. Well, Joe Heaps Nelson [was] a very vibrant character from New York City and none of his friends showed up. There was a little memorial for him that was like a two-day art show, but I couldn’t attend because I was out of town. I think people who went to that memorial were like, “Okay, I got through that. That was painful, and I don’t want to revisit that.” I think people are really afraid of death and really afraid of how it’s going to make them feel and I think it’s too hard for people when it’s somebody young.
This is the hardest I’ve ever worked on a project. It was my first New York grant [and] my first solo show. I turned 50 the day I installed the show. The day I uninstalled the show was Chris Brunkhart’s birthday. It was all these really intense landmark moments for me, and while I got a lot of institutional support, socially, it was challenging. The grant I got was specifically for Harlem-based artists to provide arts programming for an underserved community in Harlem. I showed in a community gallery space in my neighborhood, and then I wanted to do a community artist residency where I collaborated with the public doing collages and little memorial shrines. Two hospitals led me on and then canceled at the last minute. All the community centers and churches were like, “This is a very important conversation.” They all agreed [that] we should be having end-of-life conversations and I was trying to advocate for better end-of-life care planning.
I said, “Okay, great. I have all the materials, it’s free, it’s all ages, it’s open to the public and people get to take home the work.” Nobody would say yes. They did not want to have their name on it. There was a real major institutional wariness. In the eleventh hour, finally this place, El Taller Latino Americano, a Latin American community center was like, “We would love to have you, this sounds fabulous!” I was shocked. I was like, “What? You said yes?” And they were like, “Yeah, we deal with death all the time!” I think that there is a big conversation that the public wants to have; it’s just trying to find the right venue and the right way to present that material.
While creating the Bardo∞Project, you participated in the “In Conversation: Creativity, Ethics, and Spirituality in End of Life Care” panel for the Reimagine End of Life conference. Our medical system is not set up to allow people to participate in death, and our funeral system struggles with allowing families to participate in memorials. What conclusions did you draw from that panel on the aesthetics on end-of-life?
The panel was myself and my partner Jeff [Struthers], who is a ICU nurse practitioner and is starting a business called Spero Medical Group, which is like a destination hospice. Even medical professionals who want to see this part of the culture change [are] very resistant to openly discussing dying. I’m not sure how to shift that. All these doulas [are] mobilizing and there is all this talk about end-of-life care, [so] maybe if culturally we shift, then the institutions will have to shift.
How would you define the aesthetics of healthcare right now?
I’m seeing mostly the kind of basic hospice. It’s supposed to be a benefit, to [help] you manage your pain, but I think most people see hospice as giving up on your family member. Everyone thinks of it like it’s the end of the road. It means admitting that a family member or oneself is actually going to die. There is really room to change people’s minds about that. [Hospice is] something you can participate in, [and] can be a beautiful [experience] for families. I don’t think people know how to participate in dying.
Death freaks us out because it’s such a final event, but the process of dying really intimidates people—since everything is medicalized, we don’t know what it looks like. People aren’t allowed to see their family members [with a] death rattle because that really upsets them. A lot of hospices [use] scopolamine patches to lessen the [dying person’s] secretions and that’s not good for the person [who is dying], [but] it makes [the experience] less uncomfortable for family members. It’s really just hiding what death looks like. I think we all need to get more comfortable with what active dying looks like. End-of-life doulas explain to families what [death] is going to look and sound like. I would like to see society get more comfortable with the dying process because then death [will] make more sense.
This story has been edited and condensed for clarity and length.
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