Death has been stalking me for the last few years. And I don’t mean in the “we are all dying, every day we are a little closer to the grave” sense. I mean, my name is engraved on the dance card, and the grim reaper has sights set on a waltz. I mean: my uncle died in 2011, my aunt died in 2012; my mother died in 2013; my grandfather died in 2015. I very nearly faced my own demise earlier this year on the roads of a rain slick highway, thanks to the sideswiping of an enormous white truck–but instead of meeting my maker in a horrific car accident, we wound up in a ditch on the opposite side of the interstate, our panicked shouts subsided into stunned silence as we slowly sunk into the muddy, storm-swollen waters.
For a few seconds we had spun completely around on a busy state road and were facing oncoming traffic. How were our lifeless bodies not strewn in pieces all over the road? How did we walk out of that harrowing experience utterly unscathed, without a scratch? I came to the conclusion that death wants something from me, if not yet my own life. At the very least, it wanted me to sit up and take notice. And so I began to pay attention.
I became aware that, among my friends and acquaintances, I knew of several people involved in the death industry, or the study of death, or who were death awareness activists. Whether I intentionally sought out these individuals or perhaps our paths crossed by fate or circumstance, I cannot say, but it was a fact that I could not ignore. And so I sought to better know and cultivate relationships with these death positive pioneers and their work–these morticians, librarians, museum curators, hospice workers and authors–I wanted to connect with these extraordinary people, educate myself, and challenge my own fears, misconceptions, and anxieties regarding death.
Evi Numen is one such person and is in the midst of a fascinating journey relating to matters of mortality. An artist, curator, and independent researcher from Athens, Greece, she previously held the position of Exhibitions Manager & Designer at the Mütter Museum of The College of Physicians of Philadelphia. She is the founder and curator of thanatography.com, an online exhibition of contemporary mourning art and writing.
Oh, and also? Evi Numen is currently training to become a Death Doula, one whose role is “much like the childbirth doulas from whom they draw their name… their mandate is to assist and accompany.” Read further for our interview with Evi Numen and learn of the need for this type of service in a society that lost the vital connection it once had with its dying and the dead, as well as the training involved in order to ease the passage from this world to the next.
All art and photography featured today is courtesy Evi Numen, who notes: “I’ve been collecting portraits of local Victorians for a while now, mostly in the form of albumen prints (cartes de visite) and tintypes. Most of the people in my collections are anonymous, and forgotten by history. Their portraits have made their way to flea markets and antique shops, no longer in the family album. I wanted to honor them by giving them a new narrative through painting… I think of them as small tributes to the individuals depicted.”
Haute Macabre: Can you tell us, in your own words, what a Death Doula does? How does it differ, from say, the role of a hospice worker?
Evi Numen: A death doula guides the transition from life to death, and is tasked with making that process comfortable to the dying individual and their loved ones, as well as meaningful, profound and authentic. In an ideal situation, the death doula will meet with the dying person and their loved ones when they first enter hospice care and while the dying is still lucid and able to determine what a ‘good death’ looks like to them. That can include the music they want to have played in their room, what the lighting looks like, if there are any flowers or scent in the room, the visitors they want at their bedside and the readings they want to hear.
Another important task of the death doula is provide respite for the family and carers and to ensure that the individual does not die alone by keeping vigil and notifying the family to gather at the bedside when death is imminent. The goal is to ensure a “good death” to the extent that it is possible in each case. In comparison, a hospice nurse and doctor tend to the physical comfort of the patient and a chaplain to their spiritual needs, a death doula tries to provide emotional comfort and connection to both the patient and their family and loved ones. In certain cases, the patient has no family or friends at the bedside, so the death doula steps in to provide solace and company.
How did you become aware that End of Life Doulas/Death Doulas (which term do you prefer?) are even A Thing, so to speak? And what was it about their function/role that appealed to you? What draws you to this type of work?
Either term is fine, though I prefer “death doula” because it is more direct. I came across this article on WBUR that talked about DIY funerals and mentioned death doulas. One link led to another and as I learned about the concept, I realized it was something I wanted to try to do. I experienced death’s impact fairly early on, when my fiancé was killed in a car accident I barely survived. I remember asking in the hospital at the time to see his body furtively but they wouldn’t let me, they must have thought I wouldn’t be able to take it. In some absurd way (and yes, I was on painkillers since I had 8 broken bones) I wanted to see that he was “ok”. To me that meant that his death was a reality and they hadn’t somehow made a mistake. It was such an impossible thing to accept, that he was gone, I had to see him to believe it — and to say goodbye. I never had that chance.
The next time I saw his body, he was in a casket, embalmed and waxy, only a likeness- a replica, seemingly of the body of the man I loved. The efforts taken to conceal the reality of death became abundantly clear; from the doctors not allowing me to see him in the morgue, to the embalming, to the assurances that “he is in a better place now”. There is a profound lack of frankness in the American way of dealing with death and I saw the idea of “diy death” described in the NPR article as a way to change that. Through studying the death traditions of the past so I became familiar with the idea of caring for the dead and dying in a direct way in a home environment but I didn’t know about the idea of death midwifery as practiced today. After reading this article, I started looking for local trainings and couldn’t find any until I came across and signed up for the Vigil Doula training with the International End of Life Doula Association (www.inelda.org). It was the first one they offered.
What’s involved in the training and how far along into it are you?
The training is intensive and includes a 22 hour long workshop conducted over a three day weekend, several webinars and a practicum portion. I have completed the workshop, some of the webinars and I’m currently learning in the field so to speak. I work in two hospices as a trained volunteer and at the present time I visit two dementia patients in hospice care and sit vigil with the actively dying. Under the INELDA model, once I have amassed enough experience, I will enter the Vigil Doula exam and, if I pass I will become certified.
What are some of the challenges that you encountered?
Before I started working at the hospice, I was admittedly nervous about how I would react- if I would be able to handle the heavy emotional load that comes with this territory, if I was calm enough or compassionate enough. I was pleasantly surprised to see it came quite easy for me to care for the old and dying though processing each visit is not an easy task. It requires some emotional wherewithal that I frankly did not know I had. That being said, I think many people would be surprised to discover the same internal resources once they get over their fear of aging and death.
One of the things that did prove more difficult than I expected was overcoming the sense that I was intruding in a family’s intimate and difficult time. In reality, some families or individuals do not really want a stranger’s help, but others are profoundly relieved when that is offered. On a lighter note, I have had some wardrobe struggles. I dress in black on a daily basis and that is not the most appropriate attire to wear when you are on someone’s bedside or dealing with grieving families. In addition, I learned that dementia patients can see a black mat on the floor as a hole, because of loss of their visual acuity, so it follows that someone dressed in black might appear too jarring to them. Suffice to say, I had to purchase some clothing in colors I would never wear outside of hospice and vigil work.
Was there anything unexpected that you learned from the program? Any particularly interesting experiences/memories you can share regarding the folks with whom you interacted, the things you learned, or the tasks you performed?
It’s hard to choose what to mention- it has been such a learning experience! I guess the most profound thing was to realize just how our bodies know to die and how gentle the process can be if it’s not fought against. Bearing witness to the dying process and being able to identify the different signs and stages is fascinating and empowering. I have had meaningful conversations with people from all different backgrounds that I had just met. I have had the chance to meet wonderful people only to say goodbye to them a couple of hours later. It has been moving, rewarding, and an absolute honor to be there for people in their last moments.
But I have also learned some hard lessons, like how important it is to maintain good friendships and relationships or to make amends with the people you are estranged from, before you die. These are the people that can advocate for you if you are not able to communicate your needs. Something else I have learned is just how important your autonomy is – how valuable it is to be able to button your own shirt or take a walk outside. One of the long-term hospice patients is a very sweet elder gentleman that takes great pride in being able to do things for himself and working on his mobility and memory skills daily. At the same time, he accepts help when he needs it. He is teaching me the balance between pride and care. And then I see other patients that don’t have his luck but take great joy in listening to classical music. Small comforts like that can go a long way in lessening someone’s suffering.
Is there a certain type of personality that you feel would fit into the role of Death Doula? I don’t imagine this is work that “just anyone” can do…? What is some advice that you would give a person who wanted to start doing this kind of work?
I do think that anyone can learn to attend to a dying person and most of us will have to do so. But doing so for strangers can be tricky. There are certain interpersonal skills required like active listening skills, open-mindedness, and lack of squeamishness with bodily functions and medical procedures. One of the valuable virtues when dealing with elders who might be struggling with dementia and have a diminished ability to communicate clearly or are mostly non-verbal, is patience. That is a virtue I struggle with most of all because I’m not naturally a patient person. But seeing that patience and gentleness are so important in this line of work I have to step up to the plate. All in all, yes, there is a set of skills and strengths necessary, but they can be learned. The most important thing is to have the strong desire to embark on this path. To me it’s a calling that I feel deeply compelled to follow.
If the desire to take on this role is there, I would say the first thing to do is to educate yourself on death and grief. What is the dying process like? What happens to the body? What are the ways we respond to death? Thankfully, there is a growing number of resources on the subject; from books like How We Die by Sherwin Nuland, MD to Grieving Mindfully by Jon Kabat-Zinn to documentaries like “Extremis” and “Dying in Oregon”. The next step I would suggest is volunteering for a local hospice. The training for that is extensive and valuable. Once you start volunteering with the dying, you will get a better sense of whether or not this path is for you and then you can take that to the next level and take one of the death doula trainings available.” The key to this work is to determine what are the things that bring solace in such a profound and difficult time and guide the grieving and the dying through it, using these tools, while suspending your own beliefs and needs, and remembering that death is a natural and integral part of the human experience.
Has your attitude toward death changed at all during the program and the time you spent training? And I’m curious as to how it compares to say, the attitudes and beliefs of the patients with whom you’ve worked?
Bearing witness to the dying process and being able to identify the different signs and stages made me feel a lot less afraid or bewildered by my mortality and that of my loved ones. I have also come to adopt a less interventionist perspective when it comes to fatal illness and the end of life. I used to believe more in the power of modern medicine to extend life, but now I’ve come to realize that quantity comes at the expense of quality and I believe the latter to be more valuable. As for the patients, there is a wide range of responses and attitudes and they all depend on each patient’s circumstances and background. Some have trouble accepting they are even sick, and others long for the relief of death. Some turn to religion and others lose faith. I’m an atheist so God doesn’t enter the picture for me, but I can see that it is a source of comfort for those who believe.