Living with Grief and Finding Hope After Loss with Dr. Elena Lister

Courtney: So Dr. Lister, thank you so much for being here with us today. I can’t tell you how much I’ve been looking forward to it. 

Dr. Lister: Oh, thank you.

Courtney: Yeah, so to start, can you please take a moment to go into what led you into this work.

Dr. Lister: Sure. So when I finished my residency and fellowship at Payne Whitney Clinic here in New York at Cornell, I had not intended to specialize in dealing with grief and loss.

And then a few years past that, I had established a private practice and was teaching in other areas. And my then-four-year-old daughter was diagnosed with leukemia, when her older sister was seven. And she spent two years mostly in the hospital and went through chemotherapy, bone marrow transplant after a first relapse and then relapsed and was deemed terminally ill. So her older sister who was then approaching nine, my daughter who was dying who was approaching six and my husband and myself lived those three and a half months knowing all together that she was dying, and she then died, and during that time, I found that most people could not talk with us about what was happening.

And, particularly professionals, um, doctors in pediatrics, in oncology, in psychiatry. And, uh, I just decided that I had to find some way to have some good come out of what had happened to her and maybe use that good to help other people and this was the way I decided to do it, to try to help other people learn to talk about dying and death from children on through adults. And that was particularly influenced by the fact that I went to my older daughter’s third grade class to work with them and help them understand what was happening at home to my older daughter, so that she wouldn’t have to explain it because it’s an awful lot for a nearing nine year old to have to explain that her sister was home dying, and also so that they wouldn’t be afraid to come to our house, because playdates had ebbed and we felt like people were scared of us. 

And that did make a huge difference. But in that experience, there were 120, probably eight and nine year olds, and they all were not at all scared about what we were talking about. They were curious. They were empathic. 

They wanted to know what her younger sister was doing at home, and did she have pain, and, and what was she eating? And then they began to tell us all about the deaths that they’d experienced, the losses that they had had. And I came away from that, um, aware that children can and want to understand death, that they have questions, and if those questions are dealt with compassionately, and in an age appropriate way, that their anxiety is diminished, not increased. And so, that’s why I do what I do.

Courtney: Thank you so much for sharing. I’m so sorry for your loss.

Dr. Lister: Thank you. 

Courtney: I mean, I think it’s wonderful how you’re bringing it to try to help others and it sounds like you really have by speaking openly. So, for our listeners, how do you even define grief? What is grief?

Dr. Lister: So, there’s a difference between grief and mourning. Mourning seems to be the external things that we do. We have a funeral, we may wear black, we may go to a cemetery.

Grieving is, is the internal things. And that is a process by which we have the person who died is outside of us. And then over time, Ideally, we learn to take that person sort of inside of us and carry them forward with us. And it’s painful, because in that is accepting the reality that the person is not here in the form that we wish they were.

So the grieving is this, is all the feelings, the sadness, the anger, the relief, even, maybe numbness. I believe that numb is a feeling. it’s the process by which we learn to live in the current reality of the person no longer being here.

Courtney: That’s interesting that numb is a feeling too. I don’t think I ever thought of it that way.

Dr. Lister: To me, numb is the feeling we get when we don’t want to have all the other feelings. Because it gets to be too much. And actually many people feel numb and then they feel guilty about it. Because they think they should be crying if they’re around other people who are grieving and they see all these tears. But actually numb is something that we need to do sometimes. It’s because it’s too intense. And so we need to take little breaks from it. And sometimes our minds just do that naturally by going numb. Um, and then we come out of it. If you’re numb for a really, really, really long time, then it doesn’t allow you to process the loss. You need to have those painful feelings. At least sometimes. People die, but love doesn’t die.

Courtney: Is there a timeline for grief? Are there stages?

Dr. Lister: I call grief the gift that keeps on giving, um, because, um, no matter when in your life you have a significant loss, you’re going to continue to grieve it for the rest of your life. So there really isn’t a timeline for grief. We mark it ritually, usually at a year. But in fact, people feel the loss throughout the rest of their lives. 

Courtney: Yeah.

Dr. Lister: So as we evolve and experience other losses, grow in other ways, we reconsider each loss that we’ve had and when we have another loss, it brings up prior losses, so we re-process and re-process and re-process, so there’s a timeline in the sense that one would begin to re engage in ongoing life, form other relationships, go back to school, all those kinds of things in regular life. But that doesn’t mean that grieving has stopped. I think that’s a more current understanding of grieving. 

Courtney: So what are some methods for coping with all these emotions, all this processing, maybe for when grief is new and raw. 

Dr. Lister: There are many intense emotions, and this is true not just for grief. When we have intense emotions, I do think we need to feel them a little bit. But if it gets to be too much, and children do this organically in a really wonderful way, we can dose. And that’s where the going numb comes in. It’s where watching Netflix—some people do it in less healthy ways. They may turn to substances to—for mind alteration. They may turn to other sorts of distraction. Some people throw themselves into work.

Courtney: Yeah.

Dr. Lister: But, you know, so we all have our ways of turning away from the pain. If the pain is sadness, anger, whatever, and it needs to be expressed and felt, there are ways to help oneself do that in a way that is less overwhelming.

So, for example, we can write about it. We can draw—and this is particularly useful for children. We can, uh, play music. You know, you put on a sad song and somehow or other you’re less alone when you’re crying. You can scream. You know, when, uh, you’ve had a really, really intense significant loss, a spouse or a child or a parent, there’s something called keening, where you kind of rock back and forth and sob and wail. And while it doesn’t make the intense feeling go away, it does, what my 98 year old mother in law would say, is better out than in. Meaning that when you let it out, it doesn’t go away. But it does become more manageable. 

And also if you can name it. Having a name for something is helpful. It gives you just that little tiny edge of distance on it enough to look at yourself and say I am so angry about this loss. I am so sad. And if you can communicate it in words, that means you can be understood by other people. And if you can be understood by other people, then you have what my 98 year old mother in law also said, which is pain shared is pain halved. And that’s the other way we carry intense feeling, which is to share it with other people, so that we’re not alone.

Courtney: Well, as you’re saying that I’m picturing a child saying it hurts, you know, help me. It hurts. It feels good to say it.

Dr. Lister: It doesn’t it? Yeah. Exactly. Exactly. Yeah. And you know, meditation is another. helpful tool that people can do. And one part of meditation is that when we meditate, there is a concept that we are connecting to all other beings on earth. And what that does is you don’t see it, but there are other people meditating around the world and you feel less alone, even if you’re by yourself.

So let’s say you don’t have a strong support system. But when you meditate, you are connecting in a more global, universal fashion to other people who meditate and who are trying to bring that kind of process to the world. So there are ways to connect, even if you don’t have someone’s shoulder to go cry on, because not all of us have people that we can turn to.

Courtney: Could it almost help you feel more connected perhaps to the person you’ve lost?

Dr. Lister: Absolutely. Yes, that’s right. And part of why it does that, I believe, is because it connects us to our own feelings. So after somebody dies, the way you connect to them is through yourself. So if you are very aware of your own feelings, you can connect more to your feelings about that person.

Courtney: That’s beautiful. And so what you were saying earlier to help I think of it as carrying them with you.

Dr. Lister: Yes, that’s exactly right. Yeah. 

Courtney: How do you manage your own grief and process so that it doesn’t impact another person’s process? And by that I might be thinking of, you know, say you need to talk to a child about a loss, but that you’re also struggling with that loss. How do you compartmentalize that to help someone else and also help yourself?

Dr. Lister: So, the first way, step number one, is to know your own feelings. And what that means is to take the time and sometimes in an acute situation, you only have a few minutes, but whatever amount of time you’ve got, take that time to check in with yourself and say, how do I feel about this loss?

Courtney: Hmm.

Dr. Lister: And is this reminding me of any losses I’ve had in the past? And then I’m gonna, let’s say, go talk to somebody, a partner, a child. What are my concerns about talking to this person? So it requires a lot of self awareness and then thinking about who the person is that you’re going to be talking with about it. And our losses are going to impact the people in our lives. I mean, there’s no way for it not to.

Courtney: Right, of course.

Dr. Lister: So the goal is to just be aware of that impact and to be thoughtful about what the other person is experiencing. So if both of you are experiencing an intense loss, then you have to kind of take care of each other even, even while you’re hurting yourself.

Make sure that you, yourself, have the resources that you need. So, do you need someone to talk to, like myself, a therapist, or someone in the clergy, or a friend? Do you need to make sure that you have time for being in nature, if you have access to it, or a warm bath or a boxing class, um, or, you know,

Courtney: Yeah, that feels good. 

Dr. Lister: Or maybe it’s sitting in music—with music on in the dark for an hour. So if you take care of your own feelings, you’re less likely to impact the people in your life in a negative way. And with, with children in particular, like you were mentioning, I believe it’s okay to show feeling. I think that children need to see us cry. We adults, is what I mean. So in a sense, we want to model that we can have feelings and we can be not alone with them and we can get through them. 

Courtney: Are there some words or language you find useful in talking about grief?

Dr. Lister: One thing is that I really encourage us all to use the word died or passed away. Some people say passed. I think even passed away is a little clearer and that is because it’s the reality and we have all sorts of other euphemisms for it. You know, common parlance words like “lost.” “I lost someone” or they’re “gone.”

And while they convey something, again with my mind toward children listening, cause children listen even when you don’t think they are. Um, they get confused, because things that are lost can be found, but somebody who died cannot come back. So, I believe in clarity. Say they died. It’s, it’s harsh seeming but it works because it conveys the reality. And each time one says it, you have to confront the reality yourself. 

In terms of other things, I do not believe in shutting people’s feelings down. So, to leave space for a grieving person to have their feelings, and instead of “it’s going to be okay,” or “the person wouldn’t want you to be unhappy,” all of those kinds of things we do to kind of shut down a grieving person’s feelings, I really want to advocate against. I want us to be able to say, “Tell me how you are, and can I be with you for a while? And if you don’t want to talk, we can just sit here and stare out the window together.” It’s sort of bearing witness, being present.

Courtney: Absolutely, and there’s also lots of other losses in life that call for grieving, there’s divorce, there’s losing a job you loved, a pet, maybe not even under horrible circumstances. Maybe just your childhood home is gone.

Dr. Lister: Such a great question because I think those are under recognized losses. And COVID actually brought that to the fore because we lost a lot during COVID. We lost some people, many people, and that is just so painful. And also, we lost the ability to be together in person for a while.

Courtney: Mm hmm.

Dr. Lister: We lost regular school life, uh, social connections. So, those, I think the way through on that is to recognize them and own it. You know, say, Yeah.

Courtney: Mm hmm.

Dr. Lister: You know, I, I really want my childhood home. I mean, it’s time to say goodbye to it, but… that hurts. And so, you know, I mean, it’s not a tragic loss. It’s a natural loss. It’s one that shouldn’t knock us off our feet. But it has to be recognized. Divorce, moving, those are all major losses. There was a study done in where they followed up on what are the life stressors. And moving was way up there with the death in the family. 

Courtney: Wow.

Dr. Lister: So many of these changes may bring wonderful things, but there’s an element of loss also.

Courtney: What’s the cost of not fully grieving?

Dr. Lister: The cost of not grieving? One, it’s as if can’t get over it, can’t go under it, you can only go through it. It’s going to hit you at some point. It, it just does. I have in my practice people who didn’t grieve for a loss from their childhood and it comes up 15 years later, 25 years later in order to not grieve, you have to shut down, really. And the cost of that is the loss of joyful feelings.

Courtney: hmm.

Dr. Lister: And a loss of intimacy. You can’t really connect with other human beings in any deep meaningful way if a whole part of your human experience is shut off. So in a sense, you’re basically diminishing your relationships. It’s like having a secret and you don’t tell anybody and then you—in that relationship where there’s a huge secret, you’re not as close. You can’t be. 

So, one, you limit the range of feeling that you can have into positive feeling. It leads to sometimes a fear of having another connection. So if you don’t grieve, you may be afraid to love again. And some people who don’t grieve, let’s say after a spouse dies, are unable to form another relationship because they’re too afraid to feel the pain again. They haven’t let themselves feel it, so they don’t know that they can get through it. And they don’t want to risk their hearts again.

Courtney: So if we have to live with this forever, what advice do you have for people to live with loss in the long run?

Dr. Lister: One of the things I like to do is remind them that there’s always hope. Always hope. But it may need to be redefined. Let’s say that your spouse dies. Rather than hoping that you live a long life and raise your children together, you may have to hope that your children carry forward the part of their parent that is no longer here to be with them, and that you’re going to help your children know that parent as they grow older and older, even though the parent is not there. You just change what you hope for, and that’s a matter of acceptance. So, another way I think about grief, it’s a sort of a graphic. Let’s say grief is a big gray blob.

Courtney: Mm hmm.

Dr. Lister: There’s a box around it and that’s, initially, and we think, oh, well, maybe the big gray blob gets smaller. But it doesn’t get smaller. The grief stays the same size. But what happens, I believe, is that around the big gray blob, the rest of life gets bigger and bigger and bigger as you engage in it. So it’s that same big gray blob, but it takes up less space because there’s other things going on. 

So that is what happens when you go back to work, when you stay in your friendships, when you pick back up playing the piano or, you know, cooking or whatever it is that you’re just too depleted to do right after someone dies. So, the way to grieve is to live, actually, to engage in life, to remind oneself that there is still a lot here on this earth even though that person that we loved is no longer with us.

Courtney: That is so beautifully put. Is there any beauty in grief that we can look at?

Dr. Lister: Oh, gosh, yes, yes, a lot of beauty, even in the most difficult to painful human interactions, human relationships, they’re in the closeness, in the intimacy that you can have if you’re willing to share your feelings. It is a beautiful thing. 

When I think about my daughter and her, the last three months, she was five and three quarters when she found out she was dying, and she died just, um, 12 days after her sixth birthday. During that time, it was one of the worst times of my life, but it was also one of the most beautiful times of my life. Because we were so close, it was so open, so raw, so heartful. And I felt, I felt beauty in that. There is real beauty in raw, painful, shared humanness. And I think that’s what allowing our grief does for us. 

If you can find a way to carry the person forward with you, that allows you to live in the current reality. So we don’t move on. I don’t believe that we move on. I believe that we move forward with and now that loss and who that person was to us becomes sort of part of the fabric of who we are. It’s part of our life narrative. And if we can do that, if we can take the essence of the person and understand that person and, learn from them in an ongoing way even, then we can live and be more joyful. We can rediscover that it’s possible to feel joyful in life, even though that person that we love so much isn’t here anymore. 

Courtney: Thank you so much, Dr. Lister. That was beautiful. Thank you for sharing this with us.

Dr. Lister: My pleasure. It’s been great to talk with you.

Our many thanks to Dr. Elena Lister.

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