“Something that can be trusted”

Author Carolyn Zaikowski on the healing potential of death work

[Carolyn and I spoke via email in January & February 2020]

Evelyn Hampton: People I’ve talked to about Death School are curious about the project and about death—at least, many seem interested in why I’m interested in death. Yet even when people are kind of curious about death, most don’t look into it any further—I think we are usually afraid to, and/or superstitious, like “If I think about death, that will bring it closer” or “that will mean I’m weird” etc. So when I saw your post on Instagram about your hospice volunteer work (and I think it mentioned you’re starting death doula training, too), it got my attention, because it suggests you’re exploring and understanding death in ways most of us don’t. What led you to volunteer at the hospice? Have you always been curious about death and working with the dying?

Carolyn Zaikowski: Part of me has always been interested in things society and families won’t talk about. Like death and darkness. Since I was a kid, I’ve intuited that scary, difficult things are legitimate pieces of reality. We need to shake hands with them, invite them in, otherwise they’re going to subconsciously terrorize us our whole lives. Usually the things that haunt us, the things we stuff, are simply asking to be witnessed, held, and consciously integrated.

I joke that people have been telling me I’m too sensitive and intense since I was five minutes old. But getting older, I’ve realized being able to witness darkness isn’t freakish—it’s a strength. Even people in my life who’ve said I’m too sensitive, a dark horse…guess who they call in the middle of the night when they’re having a crisis? It’s an open secret that society would fall apart without people who can hold this role. Most of society balks at us “oversensitive souls”, yet we’re who they come to for therapy, for spiritual counseling, for times when a safe space to be vulnerable is needed. We’ll go directly into the middle of others’ pain to witness and troubleshoot. After years of being made to feel that this part of myself is a pathology, I’m finally embracing, loving, and consciously channeling it.

I’m guessing you can relate to some of this? Your Death School project is so cool!

In my town growing up, there were several young people who tragically died; I was also thrown into pondering death by way of those traumas. As a teen, I volunteered on the suicide hotline, and thought about volunteering in hospice. A couple years ago, I witnessed my ex-mother-in-law go through her dying process in hospice. It was profound and inspiring. That was when I finally signed up. I also joined a program called No One Dies Alone, where people sit vigil with actively dying folks (meaning they have three days max to live) who have no one to be with them. Now I’m about to be a certified death doula.

EH: I love hearing about how childhood traits and proclivities stay with us and shape our lives — like your sensitivity and ability to witness becoming what makes you so well equipped for dark nights of the soul. That thing about how our wounds become our strengths…

In my experience, the feelings that are the most difficult to be with are also the ones that make connection with others so difficult — we feel so alone in our sadness, grief, fear, anxiety — yet we all feel these things! All the time, people are feeling an amazing spectrum of grief, sadness, fear, etc. If only we could talk about it. That’s one of the reasons why I’ve felt motivated to open up conversations about death. It’s something every human has in common. There’s so much knowledge about pain and dark places to be shared.

Probably many people who are reading this have never visited a hospice and don’t know what that environment is like (me included!). What is it like, in your experience? How is the atmosphere different around the dying?

CZ: Amazing, right? Death and birth are literally the only two things that happen to all of us, and almost every human will experience huge loss, whether the death of a person, pet, relationship, a natural disaster…yet we cannot seem to get it together with talking about it, at least in most Western cultures. Ernest Becker wrote a groundbreaking book The Denial of Death. He posits that the thing most unique to humans is that we are aware we are going to die. That this is not only the our most primal fear and most subconscious obsession, but that it’s responsible for basically everything we associate with civilization…art, war, symbolic language, social structures, and so on. Some modern psychologists have taken it to build another theory called “terror management theory” where the premise is that our fear of death drives us to war and oppressive social systems.

The hospice I volunteer for mainly takes place in people’s homes. It’s said hospice isn’t a location, it’s a philosophy. Being in someone’s home can carry so many different dynamics based on family relationships, economic class, culture, etc. In my program, anyway, very rarely will a volunteer witness the death; rather, it’s a holding of space for someone over a few months of transition. Sometimes those folks are alert; sometimes they are not at all, and it’s the family who needs support or respite.

In the year I’ve been with No One Dies Alone, I’ve sat vigil for ten or so actively dying people, and have witnessed three actual deaths. I can only speak for myself: There is a level of presence, concentration, sacredness, and holding space that I can only think to compare to how I feel on a meditation retreat. Everything else but the moment fades into the background. Time gets concentrated in an unusual way. I usually play relaxing music for people, as it’s thought this can help and that hearing is the last sense to go. One active death process I witnessed happened quite quickly (within 15 minutes), with the person totally alert in the hours before. This person had come to an incredible acceptance of their death and was full of some of the biggest joy and love I’ve ever witnessed. They were speaking in travel metaphors, a very common phenomenon. As is the fact that dying people will actually predict when they’re going to die, which this person also did. It was like they had one foot in the other world and that world was the most beautiful possible thing to them.

That’s not to say there aren’t people who feel terror at the end; I just haven’t yet witnessed that personally. I will eventually. And god knows how I’ll react to my own death process, you just can’t know.

Another common twofold phenomenon is that a) people will wait till someone gets there to die; one death I witnessed, the person died literally the minute I got there. The actual minute. Or, b) they’ll wait right till people leave because they may not want to die in front of someone, or the loved one is accidentally making them stay attached to this world. It sounds woo-woo, but this stuff is absolutely real with the dying. 

At least for people whose deaths are predictable, I’ve come to believe there is an orderliness to death, a basic way it happens. In the weirdest way, I’ve come to feel that death is something that can be trusted. It’s so sacred yet so normal. Just like birth.

EH: “Death is something that can be trusted” — this is so lovely, and so against the grain of how most of us think about death (as something unpredictable/unknown that will happen to us). What I hear in your descriptions of the dying — which are fascinating to me — is a message of dying as a being with: in your death work you have been with the dying, but also, our own death is something we can be with (at least, in the case of predictable (vs. sudden) deaths). I’m thinking of how meditation teaches people to be with their bodies no matter what is happening — noticing sensations, even very difficult and uncomfortable ones, and breath especially. I know we’re both mediators, so I’m curious to hear how you think your meditation practice is informing your death work, and vice versa.

CZ: Yup—tons of connections between potential acceptance of death and certain Buddhist meditation practices that teach us to notice sensations, emotions, and thoughts in the body/mind. Developing even the slightest space with which to see them a bit more clearly. I partly came to death work through Buddhism, with the mindfulness aspects you mentioned. But also Buddhism’s unusual relationship to exploring the nature of the self. These practices are supposed to ultimately lead to seeing the true nature of reality, which is that nothing has an inherent core self, everything is made up of things which are not that thing. Carolyn and Evelyn are made entirely of non-Carolyn and non-Evelyn pieces that are constantly arising and falling right down to our atoms. Tiny deaths and births every moment. Waves in an ocean. I don’t think I can necessarily explain this in an intellectual way, I’ve just started to see it in my own experience because of meditation. What is your experience with these ideas/practices? I suspect there are people who come to it naturally on their death bed, but probably most of us should do these explorations when we’re young and healthy.

Victor Frankl said something amazing: “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies growth and our freedom.”

EH: Your description of reality as a kind of constant rising and falling of parts, like waves in an ocean, gets at what my experience has been (which, you’re right, it’s really difficult to describe this, I think because it happens outside of language and concepts). I’ve experienced this through meditation. I’ve also experienced this, in a profound and life-changing and life-enhancing way, through guided psychedelic experiences.

I agree that practicing feeling/knowing/sensing the “no self” nature of experience in an ongoing way, when we’re healthy, is important and fruitful. Doing this doesn’t just help us gain a deeper understanding of dying—it’s also a way to let go of the tension and stress we accumulate through all we do each day to maintain our identities. Have you found this, too? Identities are stressful because they’re necessary, but they’re not real. After a 12- or 16- or 18-hour day of “being [insert your name here],” taking twenty minutes to let that construct dissolve is liberating and relaxing. It’s a way of seeing a construct, a facade, an empty thing, for what it is. And it creates that space Frankl is talking about.

So, meditation practice can be a preparation for dying. Has death work led you to think about your own death in other ways? Has it led you to make any preparations, like an advance directive?

CZ: Even though I’m “only” 37, I have advance directive medical documents and a will (I live in Massachusetts, which is one of a couple states where you can write a will without needing a lawyer, provided there aren’t huge issues around property, kids, etc.) It’s true that because of friends I’ve had who died young and suddenly, I might be especially sensitized to the idea that you seriously, really, truly, for real do not know when you’re gonna go. In my will, I specified a lot, like how my memorial service should be, where special items like my lava rock from Iceland should go, etc. It’s taught in hospice/doula training that it’s quite foolhardy not to do this kind of planning when you’re young. If you’re not married to your partner or haven’t otherwise done this planning, and you don’t get along with your family, guess who’s going to get control of your medical care? And perhaps your savings, house, pets? People don’t realize how important it is to legally specify what will happen to your pets. Hell, I even have a specific friend who’s agreed that, if I die before her, she’s going to rush to my apartment to throw away all my journals and embarrassing stuff so no one else finds it! 

EH: How do you think doing death work is affecting your writing?

CZ: Whoa, gosh I’ve never thought about this. The answer’s probably something about how at least some of my writing and my interest in death come from a similar vague inner wellspring, and always have. Stuff like wanting to heal and witness myself and others (whether or not I’m successful is another story.) I’ve also thought about Becker’s theory, which I mentioned, about how probably, like most humans, I wish to deny death and be immortal in some way. Art is a way of thinking we can make ourselves live on.

Carolyn Zaikowski is the author of the hybrid novels In a Dream, I Dance by Myself, and I Collapse (Civil Coping Mechanisms, 2016) and A Child Is Being Killed (Aqueous Books, 2013). Her fiction, poetry, essays, and hybrid work have appeared widely, in such publications as The Washington Post, West Branch, Denver Quarterly, The Rumpus, PANK, DIAGRAM, and Everyday Feminism. She holds an MFA from Naropa University’s Jack Kerouac School of Disembodied Poetics and is currently an English professor. Find her at www.carolynzaikowski.com