Where Once There Was Life, with Deborah Luscomb – Podcast Transcription
“It’s absolutely astonishing that all of a sudden there’s life where there wasn’t life before, seemingly. And on the other end, there was life, and then there is no more life.” – Deborah Luscomb
Kelly Edwards: Thanks for speaking with me today.
DL: My pleasure, Kelly.
KE: I know this is a conversation that When you Die, Death Matters, and other death positive movements are looking at. And you haven’t always been involved in the death positive movement.
DL: No, and I can’t get used to calling it the “death positive movement.” It’s just a little too trendy for me, but I can live with it.
KE: How do you see it? How would you define it?
DL: I’m not sure that I would, but I understand how it got that label. I came to it because I saw, felt and heard from friends and family around North America that it was difficult to talk about death, to find out information about dying. And then came the label, about five or ten years later. I don’t know how long ago a death positive movement arose. I suppose we can call it a movement.
KE: [laughs]
DL: It seems like logical behavior for folks of my generation who have made a habit of upsetting the apple cart.
KE: And it needs to be upset.
DL: Well, I think so. You know, I’m a boomer. That’s another wonderful label.
KE: [laughs]
DL: Born in 1949. We brought sex out of the closet in the sixties, we brought childbirth home, we revamped education, and now we’re all dying. And it makes perfect sense that we would get to this stage, and go, “Wait a minute. There’s something wrong with this picture.”
KE: And when you talk about birth, you’ve had experience in childbirth and midwifery.
DL: I have. I birthed three strapping boys (who are now even more strapping and have children of their own) with midwives.
KE: Mm-hmm.
DL: Well, I’ll go back a little bit. When I first got pregnant, it was a surprise. I was one of the millions of women who had a Dalkon Shield for contraception, which left millions of American women sterile because of the damage it did to the fallopian tubes.
I had exploratory surgery to see if anything could be done, and something was done, and I unexpectedly got pregnant. And then when I discovered I was pregnant I went to see my doctor, a gynecologist turned obstetrician. And I knew immediately that was not the road I wanted to go.
This was in Colorado in 1981, and I found a midwife. And it became apparent to me that it was important that other women knew, families knew, that they didn’t have to birth in the hospital and have a caesarian section and submit to all of the other interventions that were common. So, I got more and more involved in childbirth and became a midwife in Nova Scotia, where I live now.
KE: There’s a correlation, or there’s a similarity, between birth and death, but …
DL: Oh, my goodness, yes.
KE: … but we don’t seem to want to look at that. We all want to talk about birth, but nobody wants to talk about death. So, what are the similarities that you’ve found?
DL: There’s a completely non-conceptual, perhaps even magical, transition that occurs in both directions. In one case, you end up with this unexplainable being in your arms, and we celebrate that. It’s absolutely astonishing that all of a sudden there’s life where there wasn’t life before, seemingly. And on the other end, there was life, and then there is no more life. And I think we are beginning to celebrate that, as well. It’s another unexplainable mysterious transition.
There are also the practical parts, like labor. Birth is an effort. Which burns calories.
KE: [laughs]
DL: I remember.
KE: Yes.
DL: And I don’t remember dying. I don’t know if I have before. I don’t have a particular feeling about reincarnation or rebirth. Makes sense to me. As I watch people die, it looks like really hard work.
KE: So, there is a labor in dying as well?
DL: I think so. And I especially see the labor with the family members. People helping.
KE: Mm-hmm.
DL: And it’s particularly emotional being able to make that transition. That includes loss. That is so mysterious.
KE: You have this title of “Concierge,” “End of Life Concierge.”
DL: Yes. I experimented with that. Now, I’ve shifted it to something more practical. I came up with the word. The word seemed to fit, but I don’t think it says enough about what I do. But for me it worked at the time, because I help people from when they begin, from when they want to begin, their end of life journey. The Death Café, for instance, which I introduced here in Halifax a little more than four years ago, is a way for people to begin to talk about death, because there aren’t very many venues where that’s even acceptable, yet. Although, that’s changing rapidly, especially online.
And I walk people through their document production. Often, I don’t do this alone. I have a wonderful partner, Dawn Carson. We work together. So, we do a workshop that walks people through getting their personal funeral directives and delegates documented, all of those things. And it’s a very active process and often a group process, which is rich and lively.
I help people die. I help families prepare, with a loved one, for dying. I help families take care of a body after death. I guide and coordinate funerals and cremations and burials and do grief counseling.
KE: So, that’s a big list, and I don’t know if people realize that all of these factors are important. We haven’t had this conversation in our main stream now for a while. Do you see consequences of that? Have you witnessed the consequence of not talking about death? Or not being prepared?
DL: Oh, yeah. Absolutely. I mean, they’re far-reaching. One of the things that happens when you haven’t given it any thought, and you haven’t examined your values, documented your wishes, and had conversations with your loved ones, is that people argue about what needs to be done. “No, I’m sure he said he wanted that!” Which causes strife within families during and after death. It tears families apart. And it also forces families to be making decisions when they need to be grieving, and loving. Not necessarily in that order, but when they need to come together.
KE: Mm-hmm.
DL: So, I really encourage folks to talk about it now. Get it out on the table. Get it in writing. It’s such a gift to your loved ones to have these conversations and get these decisions in writing now. It’s an incredible gift. Everybody relaxes.
KE: What do you think the reasoning is behind this? That no one wants to talk about it? I mean, it’s been a taboo now for a while, and there’s that expression that says, “Talking about birth control isn’t going to get you pregnant. So, talking about death isn’t going to kill you.”
DL: Right.
KE: Right? So, why is it that we’re afraid of it?
DL: That’s a really good question. And I think lots of people are tackling this issue, and we probably hear a lot of similar reasons. Well, there are a number of factors, but one is when embalming fluid started to be used in the Civil War in the United States; it was very convenient to preserve bodies. The use became more universal. Then the rise of the funeral industry came along with that, because somebody had to do the whole embalming procedure, which is kind of messy. And we forgot. Just like we forgot how to have babies, we forgot. We don’t lay grandma out on the dining room table anymore and have wakes at home. We don’t touch dead bodies, we don’t sit with them, we don’t prepare them. And somehow, we got scared of them. And the funeral industry has helped in that regard. There’s a myth that it’s dangerous to handle a dead body, and only in very rare instances is that the case. I mean, if there’s a highly communicable disease, but I’ve never had that experience.
KE: Mm-hmm.
DL: Which doesn’t mean that it won’t happen, but in that case, I won’t handle the body, and it will be cremated, not put in the ground.
But what I do see now with the people that I’m working with, more in community death care and home funerals, is the transformation of the grief process, because it begins during the dying, because there’s been lots of conversation ahead of time. People are gathered around, they see the dying, and the deceased does not get whisked away. The deceased stays with the family for three or four days. They do the preparation, bathing and dressing the body themselves. Often, they’re nervous about it, and they ask me to just be there and tell them what to do. So, you know, I have my little kit with basins and wash cloths and rubber gloves and shampoo and razors and all kinds of stuff, even a little make up.
The process of recognizing that death has occurred and that the body is an empty shell, that realization occurs often with families and loved ones who choose to do the work themselves with their deceased. It’s astonishing to watch. It’s quite rich and full of love. And it seems very beneficial to me.
KE: This always brings me to the word ritual, and I think there’re different definitions of ritual. How would you define that? And how important is that for end of life care?
DL: Ritual?
KE: Mm-hmm.
DL: Oh, my God. Ritual is important all the time. We don’t recognize it for the most part. I mean getting up and brushing your teeth is a ritual.
KE: Right.
DL: I suppose it could depend on how you brush your teeth. If you’re actually present as you brush your teeth, then I believe it has some quality of ritual and intention. Taking care.
KE: Mm-hmm.
DL: Recognizing the sacredness of your mouth, perhaps. Right?
KE: Your health.
DL: We use ritual unknowingly all the time. But using it even more consciously at the time of death doesn’t have to be a lot of chanting and candles and incense and all that kind of stuff. It can be, in terms of death, it can be just being present, maybe singing your loved one’s favorite song as they die, taking care of their body after death. All of those things serve to keep one more present in the reality of what’s occurring, I believe, and honoring it as, I hesitate to use the word sacred, because I think it’s over used, but as precious. A precious opportunity.
KE: Mm-hmm. And how has this affected your life, in dealing with death?
DL: How has it affected my life? Oh, maybe I’m a little more tenderized. I don’t know. I’m certainly busier. [laughs]
KE: [laughs]
DL: And part of that is that this movement, the death positive movement, is working with great energy to shift a paradigm, and it’s very frustrating. I find it’s very frustrating, because people don’t want to talk about it! Right? [laughs]
KE: [laughs]
DL: And so …
KE: I think of you going to a party, and when that conversation happens, when people go, “So, what do you do?”
DL: Right.
KE: What’s that reaction like?
DL: Well, I don’t really go to very many parties.
KE: [laughs]
DL: I don’t go to parties with strangers. Generally, they’re people I know. And people don’t talk to me unless, well, people know if they talk to me, it’s risky. They might have to … I might bring up that, “Have you done your documents, yet?”
KE: [laughs]
DL: But, actually, when people say to me, “What do you do?” …
KE: Mm-hmm.
DL: … I say, “About what?”
KE: [laughs] I know if I talk about it, I have people who say, “Oh, yes! You’re right, it’s so important!” Or I have people who say, “Oh, I don’t want to talk about that. It’s depressing,” because they’re pushing that away, again.
DL: I’ve been involved with the local hospice in Halifax and its development, just a little bit, training as a volunteer. And I was at a meeting a few months ago with a medical director, and we were invited to submit questions ahead of time. My question was, “How long will families get to spend with their loved ones after death in the hospice setting?” And the answer was, and this was in person in this big group of mostly women, “Well, as long as they need to, but at some point, they will have to call a funeral director.”
And I said, “Why?” She said, “Well, to move the body.” And I said, “Well, you don’t actually need a funeral director to move a body. You could do it yourself.” And all of the rest of the women in the room, spontaneously, all together, went “Ewwww!”
KE: [laughs]
DL: These are people who’ve volunteered for hospice. [laughs] So it’s out there: the yuck factor.
KE: Yes, because we’ve been conditioned to believe it’s yuck.
DL: We are just out of practice.
KE: Mm-hmm.
DL: That’s all. But that will change. It is changing.
KE: I find it so interesting that we are, we’re evolving. I mean, there is that initial fear, I think.
DL: Mm-hmm.
KE: Don’t you find?
DL: Mm-hmm.
KE: I mean, fear is a big factor, for whatever reason.
DL: I’ve found it around childbirth, too.
KE: Well, of course, it’s the unknown, right?
DL: Yeah. Yeah.
KE: You refer to this as the inevitable adventure. How do we enable ourselves to look at it as an adventure and not as something to be feared?
DL: Oh, my. That’s a big question.
KE: Mm-hmm.
DL: Well, there are so many factors in what creates one particular person’s state of mind. You know, what they come in with, how they’re brought up, and whether they’re used to a half-empty glass or a half-full glass approach. I really attribute my curiosity and fascination with life and death to my Buddhist practice.
KE: Right.
DL: It’s really shifted my view, my perspective about everything.
KE: Right. And do you find that when you come to work with a family, with a person who is dying, that there are steps that are similar that people go through to finally get to acceptance? Is that as varied as the individual? Or is there something that’s common to everyone?
DL: I’m not sure that I can answer that question. What is common about the people I’ve worked with? Certainly not wanting to face death. Not wanting to lose their loved one. That’s very common.
KE: Mm-hmm.
DL: It’s completely common. Nobody seems to be happy about the loss of someone they love.
KE: No. And the person who is dying is also dealing with their loss, their loss of their body.
DL: Right. Their loss of their life. Their loss of their loved ones and everything, all of their possessions.
KE: Mm-hmm.
DL: Status, wealth, fame. Everything passes. Again, my situation is particular, because I mostly work with people who have been practicing Buddhists for a long time, and the people I’ve worked with seem to face death with, for the most part, equanimity.
KE: Hmm.
DL: And I have, I’ve certainly seen family members not able to be in the room when somebody’s dying. Too much grief. Or not wanting to be around when the preparation of the body happens. They would rather not do it. More often than not it’s friends who do that piece.
KE: Mm-hmm.
DL: Family members are exhausted and are consoling each other and resting. I’m sure there are universal truths about that, but I’m not sure I know what they are.
KE: Let me ask you this: what happens in the days leading up to death? Both from the perspective of the person who is dying, the body that is dying, and the people who are losing that person? How does that look in the last few days?
DL: Oh, my goodness. It’s always different. Sometimes, there’s not the luxury of the last few days. Or sometimes, there’s total denial in the last few days, so there’s no recognition or willingness to admit that the end is coming. But sometimes, there’s actual preparation. People are prepared, they’re willing to believe, they’re willing to – belief isn’t the right word. They’re willing to acknowledge that this life is coming to an end. And people gather together and talk about what comes next and also tell stories about the person who’s dying.
It really depends. It’s driven very much by the location, if the person’s dying at home or in an institution. And their wishes, what they want the environment to look like. Sometimes, family members are scrambling around trying to avoid the inevitable.
There is so much variety in how we face our own mortality and the death of our loved ones, probably, again, having something to do with the fact that we’re out of practice. You know, as a culture. We haven’t seen it. We did not see our parents do it with their parents.
KE: Right.
DL: Everything disappeared quickly. People didn’t die at home, and they were whisked out of their hospital bed to the morgue and to the funeral home, and we weren’t involved. And that’s all shifting. So, it’s really up in the air what these days look like. We’re reinventing something that we used to know. We’re remembering something that we used to know as a culture and as human beings.
KE: Is it that we’re tapped into this ancestral memory?
DL: One would like to think that. [laughs]
KE: I would. [laughs] That brings me to humor. How important is a sense of humor?
DL: A sense of humor is absolutely critical.
KE: Sometimes people would think it was inappropriate.
DL: Mm-hmm.
KE: But it’s critical that we have this levity. And why is that?
DL: I think it’s critical that we have it all the time, that we not take ourselves so damn seriously, and that we are willing to poke fun at ourselves and each other. I mean, this is such a strange prank that we have this short life on this amazing planet that we’re destroying.
KE: Hmm.
DL: That’s another topic.
KE: Yeah, no kidding.
DL: I mean, who’s idea was this? If I didn’t find it humorous, I would get really angry.
KE: Yeah. [laughs]
DL: [laughs]
KE: I think that another thing that’s so important, and particularly in the work that you do, is listening.
DL: Listening is another absolute necessity.
KE: And is it something else that we need to teach ourselves to do, again?
DL: All the time.
KE: Mm-hmm.
DL: And it’s connected to not taking ourselves so seriously, being willing to not be in the forefront, not be the center of attention. She says, as she’s on camera.
KE: [laughs]
DL: To actually notice what’s in front of us. We have all these phenomenal senses: eyes and ears and nose and touch and tongue and mind, and we could actually pay attention to our world and everything and everyone who’s in it with awe and curiosity. And listening is a piece of that.
KE: And listening to the wishes, listening to the feelings. These are all the factors that are important in this process.
DL: We have a habit, well, I have a habit, anyway, I think we do this as human beings, of filtering what we hear and see through a lens that we’ve created, that we’ve built up over this lifetime of experience. And it’s hugely challenging to suspend that lens during experience of any moment. To actually appreciate what’s right in front of us, to see things as they are, is not easy. It takes a lot of practice, and again, I come back to my decades of meditation practice as really being a foundation for being present.
KE: And that’s something that we have to do more of?
DL: Well, I certainly do.
KE: Mm-hmm.
DL: I’m not at all suggesting that everyone be a Buddhist, but …
KE: … but it’s an awareness.
DL: A willingness to be completely present without our colored glasses on, yes.
KE: Mm-hmm.
DL: But it’s difficult. I have an identity that I’ve worked hard to create, and so, suspending that is next to impossible.
KE: And do you see that, when someone is at the end of their life? Is it difficult for people to give up that identity? Is that what we’re doing?
DL: I suspect that a big part of what we’re doing is relaxing into complete presence and whatever happens next. And whatever we take with us, I imagine, and as I understand it, from Buddhist teachings and other traditions, can be an obstacle.
KE: I think also one of the important things that we need to look at is language, the language around death and dying. And I saw something recently that said, “Instead of saying, ‘at the end of life,’ we need to say, ‘through the end of life.’” How do you feel about that?
DL: Hmm
KE: And is it important? Is language an important factor in our end of life care?
DL: I’m sure language is an important factor all the time.
KE: Mm-hmm.
DL: Intention is so much more important than the particular words that we use. And we are constantly misunderstanding each other, because what I say and what you hear are two different things. No one will ever understand me completely as I will never understand anyone else completely. And quibbling about particular words can get a little bit too carried away. I think we go overboard in that department.
KE: Hmm.
DL: I’m not saying that it’s not important, but challenging people for their use of “at the end of life” and “through the end of life,” it’s all a matter of perspective. For some people, life ends, and something else happens. For some people, it’s a transition, you know, there’s the “through” piece. But I think we can get too stuck there.
KE: Right.
DL: With our choice of words.
KE: And there are other more important things that we need to look at.
DL: Probably.
KE: Hmm. [laughs] Like sense of humor is one.
DL: Very much.
KE: So, Deborah, if you had to impart one thing that you think is important, that everyone needs to know about death and dying, what would that be?
DL: Oh, my. That’s a tall order.
KE: Mm-hmm.
DL: I would encourage the recognition of the little deaths. The losses that we experience daily. Aging, for instance. That’s a big one. When one has a baby. I remember this. When one becomes a mother, the life that you leave behind is gone, and I grieved for that, that pre-motherhood life. But it’s gone, and it never comes back.
KE: Yes.
DL: But those kinds of things happen all the time in little ways. Every autumn when I put my garden to bed everything has gone. It has come and gone, and it’s sad to me every fall when I put my garden to bed.
KE: Mm-hmm.
DL: Of course, I get to harvest my garlic at the same time.
KE: [laughs]
DL: Well, actually, that’s in the summer. I get to plant more garlic. We experience those moments all the time. I experience it. I’m sitting next to my sewing machine, which is where I make my living. This is very trivial, but a spool of thread runs out. In the middle of the seam I’m out of thread, which is very irritating. That’s a transition. There’s a little tiny loss, death, that occurs there. In that moment when that thread is gone, and I have to stop what I was doing, there’s a transition, and I re-thread the machine. They happen all the time. And they’re really important moments. Notice them.
KE: We have little griefs every single day that we don’t acknowledge, because we seem to think the word grief needs to be some big vast …
DL: Hmm.
KE: … oppressive feeling, but it happens every single day, like you said. It’s sort of a metaphor for your re-threading your life, or your next adventure after life.
DL: Mm-hmm. Mm-hmm. Loss is constant. Death is constant. Rebirth is constant. Moment to moment. And the sooner we get used to that idea, I suspect, the big one at the end, what we perceive now as the big one at the end, may become a little bit easier.
