Being Ending Well: Featured in Natural Transition Magazine Volume 6 Issue 2

This issue of NTM looks at the new deathcare professionals; the doulas, the midwives, the natural funeral directors including Amber Carvaly of Undertaking LA and Elizabeth Fournier, the “green reaper.” We also feature the eco art of Jill Powers who created an art collaboration at the end of life. We bring you natural death pioneer, Cari Leversee’s Dying Out Loud on Facebook, and much more.

A version of the following essay opens the latest issue of Natural Transitions Magazine

Being Ending Well: How I make a living as a “New Deathcare Professional”

This is my favorite part!” My husband steps back after introducing me and I am asked the inevitable “and what do you do?” question.

Over the past 5 years I’ve learned to be careful answering questions about what I do. And, of course, be hyper-aware of who is asking it. If it is someone else from the #deathpositive community I have an ever-evolving elevator pitch, but that’s rare. Usually, I start out by explaining I work in end of life- holding eye-contact and looking for that first glimpse of fear glazing over. I proceed slowly with strangers aware that what I do can trigger all sorts of emotions, brand me as morbid, and only sometimes, elicit genuine interest.

Technically, my title is “End of Life Specialist.” But, if we’re getting technical, I made that title up. I am: an advance care planner, an end of life doula, a home funeral guide, a green burial advocate and founder of the non-profit Green Burial Vermont, a pregnancy loss doula, a community death educator, a hospice volunteer, a death cafe facilitator, a patient empowerment coach, a memoir writing teacher, and a mentor/teacher to those seeking to find their place in the end of life field. End of Life Specialist has a much better ring to it. I do this all through my LLC, Ending Well which I founded in April of 2016 but started working towards in 2013.

No one just wakes up and decides “Hey, I want to be a death midwife.” said Patty Burgess-Brecht as she interviewed me.

Technically, this is true. When I decided, I was sitting at my best friend’s table in the late afternoon talking about my experiences with death and dying and life-limiting decisions at a major hospital and how I wished there was something different. My friend, a birth doula/midwife-in-training said “You should be a death midwife.” She explained to me what she knew of the profession and I was hooked. I went home and googled (no wikipedia entry came up) instead I found websites for some of the matriarchs of this movement- Donna Belk, Jerrigrace Lyons- and books, lots and lots of books. I dug in and started learning. I took any training I could afford, read almost all the books I found, and sought mentors from anyone willing to reply to my emails.

You can’t just hang out your shingle and expect to make a living.” Lee Webster said, driving me home from a home funeral intensive.

In 2014 my husband and I moved to Montpelier, Vermont. In the year since that conversation at my friend’s table I had left my old path behind and was fully committed to being a death midwife. I needed to learn what it was really like to work with the dying and immediately signed up to for the hospice volunteer training that was about to start. Already I had learned that I didn’t want to just support people through dying, I wanted them to learn about the healing power of home funerals and I wanted to introduce them to the concept of green burials. As I began working with hospice patients it became clear to me that I could never have the relationship I was hoping for if people hadn’t thought about their own deaths. I had been participating in the Montpelier Death Cafe since January and I could see the difference between people who could openly engage with their thoughts and death and dying and those that were in denial. “It’s like when you used to go to AAA before a trip,” on Death Cafe participant said recently. “You get the map, the tips on where to stay, everything you need to know to make your trip successful. Death Cafe and talking about death is the way I prepare for this trip I know I’ll have to take someday. Who wouldn’t want to be prepared as possible for death?”

But how to get people to talk about death? Campaigns like the Conversation Project and Death Cafe were in full swing, the option was there. I trained with Respecting Choices and learned how to talk to people who wanted to talk about death, but not how to get them to open up. And I began to recognize how my own background- working in hospitals, a Master’s Degree in Neuroscience, two parents with medical science backgrounds who had included me as they cared for their own parents- gave me an enormous privilege when it came to being comfortable talking to medical professionals and advocating for myself and my wants that most people don’t have and our culture doesn’t encourage. I started mining my background for tools that would make people I talked with feel empowered. A friend had a miscarriage and I learned that 1 in 4 pregnancies ends in fetal death and I started training as a pregnancy loss doula, because how can you say goodbye when you haven’t had a chance to say hello?

During this time I had proposed community workshops to anchor a local death awareness campaign to the communities it visited. These workshops were successful and well-attended. I finally had an answer for how to get people to talk about death- invite them into a space where that was the purpose. First, I decided to create a big space with a community conference of my own to launch my business, which I did in August of 2016. From that big space I could start to form relationships, small spaces, where I could help people “plan, prepare, and experience your own good death.” I haven’t looked back since.

I want you to teach me how to come into relationship with my own mortality.” -client

The woman who said that was one of the first to seek me out. And, with that question, the first to help me realize that that was my goal in working with people. Although we often choose to ignore it, we live with death every day. Death, or rather, the fact that we will die, is a part of who we are.

I finished college a semester early. During the spring of my senior year I prepared to enter grad school back at home with my parents. One morning the house phone rang, I barely recognized my distraught friend’s voice but I knew enough to sit when she asked if I was sitting down. The day before our good friend had left campus to go home for the weekend. Her car spun out and into the path of a 52’ tractor trailer. She had been declared dead at the scene. Three weeks later, just after coming back from campus for her memorial, a friend working at my college asked if I knew any dance majors, because there had been a horrific accident in the dance studio. My heart sank. One of my good friends had died when she fell from the studio during a dance rehearsal. A few months later graduation was surreal- admist the messages of how we were now ready to do anything a voice in my head reminded me that one of those things might be to die.

The miracle is that we get to live!”- client

I’ve never understood why dying was considered a taboo subject. I took my first steps at my great-grandmother’s funeral when I was 9 months old. When I was 7, and my great-grandfather died I watched my father cry for the first time as I asked him what that meant and later, held his hand tightly as I placed a white rose in my great-grandfather’s casket. A woman I worked with this summer echoed my feelings as we spoke about her experience with death- her husband had died in her arms. It was beautiful, she told me. And though she was devastated at the time it taught her that life was a gift, a miracle.

As a hospice volunteer I have found a special niche working with people who are in nursing homes. Many of the patients I have been with as a hospice volunteer have had cognitive issues, such as dementia, even more have had difficult relationships with their families. I find, in our conversations, that they are often processing their lives as best they can. I don’t think it mattered that they were dying as much as it mattered that they were able to tell their story of who they were. The first summer I worked as a volunteer I worked with a woman who was no longer able to hear and had outlived all of her family. I had to write out anything I wanted to say to her. Luckily, she had plenty she wanted to say to me and I rarely had to write anything at all. She described in great detail what Montpelier had been like 90 years ago. The librarian let me check out archival material that included photos from the time this woman had been a child. She used those photos to construct her Montpelier for me. And although it’s been nearly 4 years I still walk through downtown thinking, oh, this is the way she walked to school, this is where her house would’ve been.

Joan Didion says, “we tell ourselves stories in order to live.” People who are dying give us the shape of their lives in the stories they tell, but those stories also shape us. Just as I will never look at Montpelier the same way again, I will never watch another war movie without seeing the faces of veterans I have sat with, I will never drive by an old farm without thinking of women who made homes out of them. I will never pass up the chance to hear someone’s story as it is true for them and hope I can always appreciate they ways in which they change me.

Will you call Michelle?”- Hospice RN

While the #deathpositive movement focuses on the idea of a “good death,” I’ve been cautious about defining that (you may have noticed my mission statement for Ending Well is “your own good death”) ever since one of the first Death Cafes I attended. Another attendee told a beautiful story of someone who died “kicking and screaming.” We can come into relationship with our mortality, but that doesn’t mean we become accepting or passive about dying. Even the stereotypical “good death” involves actively engaging with dying. Regardless, most people do not want to die alone and along with the rise of the narrative of the “good death” has come to resurgence of “the vigil”

Although even as I type those words I am aware that resurgence isn’t at all accurate. I recently realized that I learned “to vigil” not as a end of life doula or a hospice volunteer, but from my mother when her own mother was dying. Their relationship had never been easy- my grandmother could be quite cruel, we were not close. But my mother was always there for her mother. As my grandmother’s body was devastated by a recurring infection she told my mother she had had enough. She saw her husband, my grandfather, who had been for nearly 10 years, and she wanted to go with him. Without the help of a hospice agency my mother went to be with her mother, and I went with her. As Christmas approached we sat with grandmother in the nursing home. When my grandmother could no longer talk, my mother just held her hand and I sat beside her. As my grandmother’s breathing slowed, I saw tears in my mother’s eyes. The room was silent and full of love. When my grandmother never inhaled again, I slipped quietly from the room to let my mother say goodbye. Instinctually, I knew not to go to the nurses station first and trigger the activity that would follow. Instead I called my Dad and asked him to come. He was the one that spoke with nurse. The three of us sat with my grandmother’s body until my mother was ready to go. It was this experience that modeled for me what it means to simple be present with someone, for someone.

I sometimes will get a call from my hospice agency when someone is lingering in a facility. I don’t think I’ve ever sat with such a person more than twice in those situations. They are never people I have met before, I rarely get much personal information- other than the basics passed along from my volunteer coordinator and what I can gather from the objects in the room. But I never make assumptions. I feel like that final stage of dying is a great inward journey and I don’t know what these strangers are feeling. I try as best I can to simply surround them with love. Sometimes silence feels best, sometimes I’ll say out-loud: “Everyone you have ever loved, knows that you love them. Their love is with you now. When you are ready, that love will stay with you, whatever comes next.” I recreate in those rooms the love I felt in my grandmother’s room. And I hope it brings ease to those final hours.

Our graves are our final stories.”- green burial admirer

Not long after I launched my business I was contacted by a cemetery commission member the town over. Vermont had some statutes in place that made green burial difficult and while most of them had been changed in 2015, there was one left in place. People were asking about green burial in her town and she wanted to know what to say. After an amazing community meaning speaking about the importance of green burial we got the opportunity to change the final statute interfering with green burial and it is now a fully viable option for Vermonters.

When seeking popular support to change the burial law I traveled around the state providing free library talks about green burial. Over one hundred people came out in 8 towns. Many knew nothing about green burial, many never realized that having a green burial wasn’t easy in Vermont. The discussions at these events were lively and informative. I had come to learn about green burial while training to be a home funeral guide- to me there is a link between the two ideas, both are final acts of love that honor the person who has died. Vermont was the first state to recognize in statutory law that families have the right to care for their own dead, and yet it is one of the last states to make it possible for people to be buried in accordance with their ethics and values- for their graves to be a part of the larger story of life instead of just birth dates and death dates on a headstone.

I often tell a story when speaking about green burial. It has to do with my father’s mother’s funeral. She was the last of my grandparents to die and, like all my grandparents, she had a conventional funeral- she was embalmed, had a viewing, a church service, and a cemetery service. But, at the cemetery they did not lower the casket. We walked away from her grave with her casket sitting on top of the lowering device. I don’t think I was the only one in my family who struggled with the feeling of leaving her exposed in the cold January air. I certainly felt no sense of closure from the experience. To me it speaks to everything in our conventional funeral traditions that alienate us from our dead and make us passive participants in after death rituals.

In my end is my beginning” – T.S. Eliot

Building my business over this past year has made me realize that the biggest obstacle I face is the same one I wrestled with when I set out to have a career as an end of life specialist: our unwillingness to engage with our own mortality. We, as a society, are afraid of death, of dying, and of the dead. I don’t think we need to overcome that fear, but I do think we need to overcome the barrier to talking about these things that that fear creates. In my work, I ask people to work with that fear. I create a space for them to be themselves, fear and all, and ask them to make plans for their own dying, their own funerals. I am present with them in their dying. I help them design personal, active, memorial rituals for their parents, siblings, friends, children, and babies they will never meet. It is the greatest privilege to do so and it has taught me more about life than I ever knew I didn’t know.

When once I would have served as the town witch- caring for the dying and laying out the dead, now I find myself at the crossroads of a major transition- one that involves everything from medical care to popular culture. The space that I have created for people in my community is being being sought out by people who have read Being Mortal, or seen a loved one die, heard Beyoncé talk about miscarriage, or are curious about the Viking-esque funeral they saw on “Game of Thrones.” Slowly the barriers that fear put up between death, life, and talking about it seem to be eroding.

When I tell strangers what I do for a living I am always seeking for a way to create a small space for them to become aware of their fear, at least enough to engage with me about what I do for a living and why. Even if it is just for however long it takes for them to make an excuse and move onto someone else to talk to, people who meet me are reminded that people die, that they will die. Changing the conversation, even for a few minutes is just another way of creating a doorway for death to be a part of talking about life. So I keep talking, even if sometimes it makes me awkward at parties. Technically, doorways are just holes in walls after all.  -Michelle Acciavatti

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