A Great Mercy: A Death Doula on Grief and Transformation

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Interview by Kimi Eisele

ADRIENE JENIK is an artist, educator, and death doula living in the California desert near Joshua Tree. She is a faculty member at Arizona State University’s Herberger Institute for Design & the Arts, and her recent creative work focuses on issues related to environmental resilience, military testing and training, and indigenous values in the desert. Her ongoing series of DATA HUMANIZATION performances recast endurance work for our time. DRYLAB2023 (with co-director Marco Janssen and eight participants) imagined a near future of water scarcity that was enacted over 30 days in an experiment in extreme experiential learning. A singer/songwriter and published poet, Jenik also gives climate future readings using the ECOtarot deck she designed. We spoke by phone about her work as a death doula.

Kimi Eisele: Can you define what a death doula does?

Adriene Jenik: Death is often seen in our culture as a medical event, but we know that it’s so much more. It’s an emotional event. It’s a community event. It’s a spiritual event. It involves legacy. The death doula can really assist with all the other elements of moving from life through death and beyond. The idea is to support death as the sacred time that we know that it is. It is a teaching time, a learning time, and we work to hold it up that way.

KE: I know the word “doula” in terms of midwifing life, supporting pregnant women to birth babies into the world.

AJ: The word doula has a basis in the Greek language. It actually means female servant. In earlier times, it was a role for a young woman in the family to be present in that way. We know that both birth and death are amazing, transformative experiences—not just for the person going through them, but for the circle of people around them. The term has been taken up by death doulas because it is the work of supporting that transition, making it lively and sacred and everything that it’s meant to be. There’s a bit of controversy around death doulas taking on that name, and there has been some discussion about other things it could be called. But it has kind of stuck. The official certificate that I received after my training was a “Sacred Passage End- of-Life Doula.”

KE: What drew you to doula-ing? Did you fall into it or choose it?

AJ: My formative years in my 20s were during the AIDS crisis. I lived in New York City and I am queer, and I found myself in a situation where many friends and loved ones and people in my community who I adored and cherished—magical, creative, beautiful people of all kinds—were getting extremely sick and dying. At the same time, they were being cast out by their families or didn’t have families that they could even go to. Groups of people just rose up to make family, to do everything from just sitting with someone to assisting them with organizing things and communicating with other people, to comforting them, to rubbing their feet. I noticed that I was able to remain to be very calm and present in really difficult situations. That was kind of was a little flag for me like, ‘Oh, I have this capacity.’

Later on, I had other friends and loved ones who were ill, and I was attendant with both my parents as they passed. Again, I was able to be present in a way that my siblings weren’t because they were so overcome with emotions. It wasn’t about not feeling but about just being present with what was happening.

Last year I finally did a formal training program for it. Although I should say that people can perform the role of death doula and can be an excellent death doula without going through a program. In many Indigenous and African American traditions, this is a treasured role, passed on over generations. But in contemporary white American culture, that’s not necessarily the case. I decided I would feel more solid offering myself with more training. I got trained through Conscious Dying Institute. It was a very beautiful, profound experience and left me with a wonderful network of other doulas.

KE: When we met, I noticed that right away that you’re very poised and attentive and quiet, always listening. Did you grow up that way or did that equanimity grow out of your life as an artist?

AJ: No, the way you just described me made me smile because it’s not at all how I would think of myself. I was like a little wild animal. I grew up with a lot of trauma. I was very well defended and even aggressive. But I’ve always had a connection to spirit, and when I was young, I just had a sense of how to make sacred space. I’ve always also like really valued spiritual traditions and so things like singing, for example, always kept me close to spirit.

What changed me in a very deep way was my relationship with the desert, and I do think it connects with the death doula work. I contemplate death a lot here. Not because things are dead, but because life is so precious. Maybe there is a clearer fragility or the barrier between life and death feels more permeable here. You come upon bleached bones, you hear the coyotes howling at night with their death jubilees. Or you feel it yourself if you get lost. The desert helped me become quiet and introspective. It brought a sense of horizon. I always felt like I was too much when I was growing up. Something about the expanse of desert enabled me to really feel like, ‘Oh, I’m not too much.’ It right-sized me.

KE: That’s beautiful. I feel the same way about the desert and I think it has something to do with exposure. You can’t hide, so it’s like, ‘Come and get me.’ Can you talk about some of the ways in which you and or others doula to their talent?

AJ: For someone who’s just got death on their mind and knows they need to get their papers together, we can be accountability partners, to help you talk things out and ask questions. In our training, we went through a process called the ‘Best Three Months.” The idea is that if you had just three months to live, what would you want to attend to in your emotional life, your spiritual life, in terms of your legacy, and practical things in terms of your physical body? What are things that would be important to you? I call it an overall death plan, a way of understanding and identifying the things that you feel you need to be healed in your emotional relationships so that you’re not waiting until the last moment. A lot of that work is also about contemplating your death so that you can have a better life.

I’m working with some doulees who are elderly, and now of course there is Covid. They are unsure about going to the hospital, if they were to contract it. So I ask, “What does that mean? What does that look like?” And we’re able to talk out all these things, so that they don’t have to be anxious about them. Then I work with them and we set those plans in place. A lot of people don’t have someone they can talk with about that, either because people in their life don’t want to think about it or because kids sometimes don’t want to deal with it because it’s so intense. Mom, you’re not dying. Dad, you’re not gonna, you know—. A few people I work with don’t want to talk to their kids about it either. It helps to have this other person who can be an active listener and also check in lightly, ‘Hey, have you made any progress with this?’

Death can break families and communities apart, but it can also bring them together. Doulas can have the intention that this be a sacred time. We are not in active despair or mourning, with all the intense emotions that come up, so can be looking out and seeing things, like, Oh, that teenager’s off to the side, how do I bring them into this? We can see the dynamics in different ways. In California, we have the opportunity for physician-supported death, so people have questions about that or may need assistance with thinking through that with their family.

We can help with home funerals or with having the body at home if people want, directing and guiding the deceased’s loved ones in washing and dressing the body and taking it wherever it needs to go to be transformed for burial or cremation. That’s also a beautiful process, and doulas support that as well.

KE: How is Covid-19 impacting these moments for people and your work? How have you had to adjust?

AJ: One of the principles that we have is that no one dies alone. Which of course is being rethought in this time of Covid. But people have death on their mind, so it feels like a real opportunity to speak with people. Death doulas help make death more comfortable in a certain way, integrating it as part of life. But not being able to be with people, it’s a massive thing. It really changes things. We’re finding different ways to work with that. How do you think of a vigil differently? And we’re not seeing the bodies. I’ve heard people in my rural community say they think Covid is a hoax. This is not just a role for death doulas, but how do we think through the issue of the absent body?

I’ve been working with some other artists and a group called National Volunteer Organizations that Assists with Disaster  or VOAD, organizing outlets for collective grief. People are suffering with funerals and memorial services not being able to be held in the same way, with travel, with all the things that you would normally do to commemorate someone’s death and that also help with grieving. When that’s gone, what happens with grieving? There’s a lot of need right now for people of many different traditions to come together and offer suggestions and resources for grieving as a collective. Some of this is about supporting our healthcare workers, because they’re having to step in to take on more of this work, which is really moving for them, but also adding additional heartbreak and labor.

KE: What are some of the creative ways in your community or through the larger doula community that you’re seeing people be adaptive around this?

AJ: There’s was a beautiful project in May called Naming the Lost, a 24-hour vigil where people from all over the country were saying the names of people that died. I’ve been working with people doing walking meditation, which is happening in different places. There’s a beautiful open source repository online where artists can share work related to mourning for Covid and anyone can use it. We’re also working to create a grief deck, not cartomancy but more like flash cards with beautiful artwork on one side and on the other side prompts or practices from different traditions, ideas for people to work individually or with groups to express and engage with grief.

There’s also been a really intense opportunity around mourning with the Black Lives Matter movement and deaths that are happening as a result of state and white supremacist violence. There’s tremendous mourning and anger and outrage and people coming together to mourn and remember. I would even include the incredible artwork being made to remember people in that movement.

There are doulas in the African American community who have been engaging grief as a transformative as a healing process. The work of Bronte Velez comes to mind. She’s amazing. She’s a doula, but also works with Lead to Life, an Oakland collective doing rituals and art with communities and small groups of people to imagine new forms of justice.

We do know that grief can be transformative, and that it’s powerful when people come together to witness and experience that. In other cultures, there are professional mourners or everybody’s that’s died the past year is mourned at the same time and the whole community comes out.

KE: This echoes what a friend of mine said recently about grief and mourning, particularly when experienced collectively, being our superpower. I feel like I understand that in my body but would love to hear you talk about that transformation.

AJ: People experience grief in very different ways. It has cognitive effects, it has physical effects and also emotional and spiritual effects. People can literally become ill as a result of it or lose consciousness. And then some people are very high functioning with it. It’s different for everyone. But there’s so much fear around death and grief. People are afraid of getting a taste of it and then saying, ‘Oh, I can’t go there because I’ll completely fall apart.’ In our culture, you’re not supposed to fall apart. Most people don’t have the safety to just surrender, to not be okay for a long time. In the past, someone would be in mourning and they would wear black for a certain amount of time, so you would treat them in a different way; you’d understand them. In grief, you’re so very fragile—it’s almost like you’ve been skinned. Many back away from it. But when you move through or with grief, it’s a teacher. There are really incredible things that grief can teach you about yourself and your strengths. The beauty of the community that rises up to greet you—a great mercy. But you do need to give yourself over. As a doula, what I’m doing is like helping people understand that they are held.

KE: What has being a death doula taught you?

AJ: One thing it has taught me is just how deeply important someone else’s presence is. That can be approximated on zoom or on the phone, but it’s harder. Because part of it is just being quiet. That’s a really deep lesson. A lot of times, we think, ‘I need to do this or that.’ But really, it’s the very deep power of presence, of human presence.

Loss is much more difficult or complicated if you don’t give yourself up to it. There’s a coupling. On one side is being present and awake and alive to someone passing in whatever capacity you can do that. On the other side is your own grief. When I’ve been able to walk someone up to the place where I can say, ‘Go. Okay, you’re going where you’re going,’ it has assisted me in my grief. Conversely, I’ve seen people who have not been able to show up, for whatever reason, and it makes it much more difficult. Witnessing. It’s something to not turn away from.

Cover photo by Daniel Schwartz

This interview was made possible, in part, through the Arizona End of Life Care Partnership, a growing network of organizations and individuals committed to ensuring quality of life at every stage through education, support, sound policy and choices. Since 2014, the Southwest Folklife Alliance’s End of Life: Continuum program has produced events, gatherings, films, and publications honoring the many traditions and practices related to end-of-life, grief, mourning and death in Southern Arizona’s folk, ethnic, occupational, faith-based and alternative communities.

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