Joyal Mulheron and Casey Affleck on the State of Bereavement Care in the U.S.
Joyal Mulheron describes bereavement as an “invisible public health crisis”—and she’s working to address it. She founded and serves as executive director of Evermore, a non-profit aimed at improving the lives of bereaved families through research, policy, and education.
Casey Affleck won an Academy Award for playing a grieving father in Manchester by the Sea and has explored the grief experience in other roles. He uses his celebrity to bring awareness to the plight of grieving families as a victims’ advocate.
They talked with us about the health and economic impacts of grief, the need for research on bereavement, and their work to advocate for policy changes.
Watch the 2020 Evermore Digital Summit, which features Casey Affleck here.
Lindsey Whissel Fenton: Welcome to Take Note. For WPSU, from my home studio, I'm Lindsey Whissel Fenton. Joyal Mulheron is a Washington DC policy veteran who spent more than 15 years working for various governors, the White House, and a number of leading non-profits. But her life changed forever following the death of her daughter, Eleonora in 2010. Joyal is now the founder and executive director of the non-profit Evermore where she works to make the world a more livable place for bereaved families through research, policy and education. Her work has been featured in The Wall Street Journal, The Washington Post, and USA Today. She's also featured in WPSU’S Speaking Griefinitiative. Casey Affleck won an Academy Award for playing a grieving father in Manchester by the Seaand has explored the grief experience and other roles like A Ghost Storyand his upcoming film The World to Come. He uses his celebrity to bring awareness to the plight of grieving families. Joyal and Casey, welcome to Take Note.
Joyal Mulheron: Thank you.
Casey Affleck: Thank you.
Fenton: Joyal, you refer to the implications of bereavement as an invisible public health crisis that touches nearly every American household. And it has unfortunately touched your household as well. This is something you are all too familiar with. We're going to talk more about the issues around bereavement more broadly. But first, tell us a little bit about your daughter Eleonora.
Mulheron: Thank you for asking about her. Eleonora is our third child; we have four kiddos. And I learned when I was pregnant, that there was something not quite right about this particular pregnancy, and learned very quickly, I was likely to have a very seriously ill child. So, I put together a medical team that I thought could provide the best care for our child, and was so delighted when she survived, not just the pregnancy, but then the delivery and the first few minutes and the first few hours. Kiddos with her condition often do not. And it was really during that experience and during the pregnancy that I realized… where I went from sort of being the patient and following what the doctors were suggesting that I do, to realizing that I am the only one who's going to be able to fight for her, like no one else. We decided to provide our care for her at home. And it was a very obviously emotionally difficult experience, not just for myself, but for the whole family. And the whole time thinking this has been just such a terrible experience and not just to watch your child die slowly and sometimes multiple times a day, but all the other things that were happening to us as a result.
Fenton: And, you’re open about this, that in this space of grief, and in in the instance with Eleanor, we're talking about so many different griefs, you know, the grief of her illness, and then the grief of her death, in in this space, every interaction has the potential to be so healing, or conversely, so hurtful. And unfortunately, it seems like many interactions tend towards the latter. And in particular, I'm thinking of your experience that, you've had so many, but one example that just really has always stuck with me is the experience of your interactions with the insurance company around discussing Eleanora's care. So, can you tell us about that?
Mulheron: When you have a very sick kid, health insurance companies give you a case worker, and they would call, my caseworker would call, and she would say, “Well, honey, do you think she's gonna die in 10 days or less than 10 days? Because if it's less than 10 days, I have to fill out different paperwork. And if it's more than 10 days, it's like 100 pages that I have to fill out. So, do you think she's gonna die really soon?” And, so, you know, just to receive those calls, in the moment while you have a child who may be that morning, has had three events and almost died on the kitchen floor. And to just sort of always putting this in context. You know, you have the family, and you have to mow the lawn, and you have to do all of these other things. You're absolutely right. You have these moments of interactions with people where you're seeking just some compassion or some understanding, particularly from a company who sees the medical records, who understands the complexities of what's happening on a day-to-day basis, that there might be another way of getting that information, like calling another provider and maybe not the family themselves to ask, “Is she going to die and how soon?”
Fenton: Unfortunately, Eleonora did pass after five months in2010 and you said that every minute with her was full of hope and of life. What were those first months years, like for you after your daughter died? Like, walk us through a typical day, if that was even a thing, in the space of being a bereaved parent.
Mulheron: That's hard to do. I will say, in the first few weeks, it was impossible for me to know if I had showered, if I had eaten. My whole goal, in the very beginning, was to not lose my other children. I had two other elementary school girls. And so, I just had to remember to get them from school. If we went to the grocery store that I didn't forget that they were with me, like that was the only thing that I had the capacity to do. I really I, I actually, so many people… so, a kind neighbor had created a flier and told hundreds of people in our neighborhood that our daughter had died. And that was well-intentioned, but of course, I wasn't looking to publicize this at this point. And so, people were just streaming to our house with tons of food. And the irony is, at least for us, you're not hungry. You're so devastated. Like, it just… you're not going to eat a casserole. And so, all of these people were coming into the house. And so, I left and stayed at a place down the street, because I just couldn't handle all of the social interactions. It was too overwhelming. And it was November and I found myself sitting outside in a tank top and shorts for several hours. And it was incredibly cold. But I, and I know other I've been with other families when this has happened, you don't even realize how cold you are. And you're outside. And I was sunburned. And you're just numb. And that lasted for a while, I did end up going back to work. And I cried every day to and from work for about 18 months. And it was it's, it's something that no one, no one should have to go through. It's very painful.
Fenton: And unfortunately, far too many people do have to go through that. And, you know, Joyal, from working with you on the Speaking Griefinitiative, I've learned that your experience is much more the rule than the exception when it comes to grief. But often, until we experience grief firsthand, much of not all of our understanding tends to come from the media, we consume it, you know, it's books, TV shows, movies. And that brings me to Casey. In your work you received an Oscar for your performance in Manchester by the Seain which you play a bereaved father and brother. What did the preparation and inexperience of embodying that role teach you about the reality of grief?
Affleck:I can't take too much credit for that. I… it was this insightful and empathic writing of Kenny Lonergan, in Manchester by the Sea, that really taught me the most and that made that movie, something that connected with people so, so deeply. It was a great roadmap for me, it wasn't fun to travel. But the thing about sort of working in the arts or in particular, being an actor and working with stories like that is that you got to get to go to work every day and bring all of your emotional baggage to work and dump it on the floor and hold it up for people to see. And it's very cathartic. And I'm lucky because most people have to go to work and keep all that contained and buried down and do their job. So it's a unique position. And it's one of the things that I like about, about working in the arts.
Fenton:And again, Manchester by the Seaoffers a fictional glimpse at the experience of parents using a child. But this experience is a real one that comes with a lot of challenges. And in so many ways that we might not even be aware of. Joyal, what kinds of implications are there for grieving people, particularly, let's say, for example, parents who experienced the death of a child?
Mulheron: There aremany, unfortunately, and mostly we look at this issue as a personal issue. And so, we say, you know, “I'm so sorry for your loss.” And we kind of pull back and we don't know what else to say. And then as we observe the family from afar, we begin over the next couple of years to see, “Oh, they got sick from this or their child's now of having difficulties in school or interactions with law enforcement,” and so forth. And I think what's very unique here and unique about the work that we're doing is we're no longer looking at it from just a person-to-person tragedy. When I step back to look at the data around bereavement, and the implications of losing a loved one, I find it stunning and incredibly worrisome, because it is not just the family themselves, now that is at risk of poor health, social or economic outcomes. But they're also pulls on our social systems, incarceration rates, drug abuse, violent crime involvement, lesser academic attainment, fewer wages. Those in the collective at the population level offs are some of the outcomes and as a society, it's not simply knowing how to address your neighbor or your colleague or your friend who's lost someone so dear to them, but as a society, it's shifting the paradigm so that we're able to put a system of support around them so that we don't have so many negative outcomes for these individuals or communities.
Fenton: If you're just joining us, this is Take Note on WPSU. our guests are Joyal Mulheron, the founder and executive director of Evermore, a nonprofit dedicated to improving the lives of bereaved families, and Academy Award-winning actor Casey Affleck, who lends his celebrity to this work as an advocate for Evermore. Joyal is also featured in WPSU’s Speaking Griefinitiative. The U.S. does trail other developed nations when it comes to bereavement care, but you are working to change that with Evermore, which you founded in 2015. So, when did that idea first begin percolating, that this is an issue we need to take on, and that you decided to found Evermore?
Mulheron: Truthfully it waswhen I was on my kitchen floor one day. And, it was literally the fifth time that day that our daughter almost died. And the phone is ringing the school is calling the employer wants me to resign because I'm taking up the (inaudible) like it was so much happening in that moment. I decided to go back to work because, frankly, I needed to I would have spiraled terrifically and quickly had I stayed home and I went back to work. And there were a series of high-profile events that began happening. And it was Trayvon, it was Hadiya Pendleton, and the hotshot firefighters, and Sandy Hook and the Joplin tornadoes in the Washington mudslide, there were just a series of high-profile events. And I began to think, “Oh, my goodness, all of these people are about to have similar experiences, they will lose their loved ones in different ways and interact with different systems. But they are about to be told, go find a therapist or a support group. And there you have it, and you may or may not have your job at the end of this.” And that's when I decided I need to quit my career and the stability and the predictability and begin to look into this. So, what started as sort of an intuition has certainly evolved to a sense of conviction that there's something here. And quite frankly, I feel a profound sense of responsibility now to move this issue forward. Because I have been so humbled and honored to sit on the other side of family tables or stay in their homes over the weekends. And they have shared with me, so many things that happened to them that they've never talked about to other people. And frankly, they never even realized either what was happening in the moment was wrong, or what was happening in the aftermath was all related. And I feel that it's my obligation to begin moving this forward as a national issue in a national health priority.
Fenton: What does Evermore do?
Mulheron: We are setting a national platform for public policy change around bereavement care.
Fenton: What does that entail?
Mulheron: Really, launching a social movement at the community level and working in Washington DC and other loci of power to change how the country sees and views bereavement.
Fenton: Casey, what drew you to lending your voice and to getting involved in this work of advocating for bereaved families?
Affleck: Well, Joyal inspired me to be involved in order to the extent that I am. You know, it's been a disorienting and scary and difficult year, and I've had other years that are just as bad but those were kind of just about my life, whereas this year, it was happening to everybody and I was at home feeling like I wanted to do more. So, everything that came my way, I said, “Yes, what can I do?” You know, any opportunity to be involved in sort of easing the general suffering out there. I want I wanted to and even in the sort of teeny ways that I could and Evermore was a great one because it addresses a fundamental change that I was hoping to see happen. So it’s just people investing in one another investing in compassionate support and making that a part of the agenda of our society, not just, you know, looking for ways to improve the GDP, making mental health care a priority. And, you know, there is no, there's no issue that exists in a vacuum, like I was saying, I mean, bereavement is related to unemployment, it's related to mental health care, it's related to criminal justice.
Fenton: The National Academy of Sciences says that the death of a child is the most stressful event a person can experience. Yet the death of a child is not covered by basic protections like the Family and Medical Leave Act, which begs the question, what kind of policies do exist currently that support and protect brief families in the US?
Mulheron:So, it depends where you look there, not a terrific amount of them, and certainly around employer leave bereavement leave, that is a place where a lot of work needs to be done, and frankly, this year, will be focused on doing that both at the community level and at the national level.
Fenton: What might the drawbacks be to some sort of national bereavement policy, for example, extending FMLA protection to having impacts on small businesses? I imagine that could be expensive or difficult for businesses. So, what are we looking at in terms of maybe the flip side of if some sort of policy change happens?
Mulheron: So, policy is not uniform. So, what would apply in an FMLA, for a large employer may not necessarily apply for a mid-size or a small employer. You're absolutely right, in fact, the majority of employers in the United States are small employers, and it is just as critical that they continue to function. That being said, I do think that firing someone the day after, or even the hours after their children have been murdered, is not the way forward. And so, I do think that there is not overregulation by any stretch of the imagination. But there is a way to preserve an individual preserve a job for at least a short term, in order to just not add to the complicated nature of sort of getting your sea legs back underneath you and trying to, to get back out into the community.
Fenton: We just had an election that demonstrated how deeply divided our country is when it comes to political ideology, among other things. But death is something that does not discriminate. Is bipartisan action possible for this issue?
Mulheron: Oh, undoubtedly. It's already happening. I've had the good graces of meeting with staffers in both the House and the Senate, both in the democratic and the republican parties. Everyone has been nothing but kind and generous and gracious. And to prove the point, the House democrats put bereavement care in the US appropriations budget. So, for the first time making it a national health priority. The Senate republicans did the same, and in fact, added some extra bells and whistles to it. And so, there's a perfect example of bipartisanship. And so, I agree that when it plays out on the media, it may play in one direction. But when you sit down with people at the kitchen table, this is a shared human experience. And I believe no matter what side of the aisle you sit on, that there is a lot of hope on both sides. And there's a lot of belief on both sides that we can do better.
Fenton: President Elect Joe Biden is no stranger to grief. He lost a wife and two children and is spoken very publicly about his grief experience, including at his speech at the 2020 Democratic Convention. How optimistic are you that having someone who's very open about grief in the White House will translate into meaningful change in terms of bereavement policy?
Mulheron: It would be impossible for me to speculate on that. I will tell you that, certainly, grief and bereavement are part of Joe Biden's experience, but it is a part of so many Americans experience and so many former U.S. presidents and that didn't necessarily parlay always into some advancement. So, there have been great advancements by U.S. presidents who to my knowledge did not suffer significant or traumatic death events, and they lead to airline safety measures. So, I can't draw, you know, I can't look into the future and speculate exactly what Joe Biden will or will not do, but certainly I think he understands the company. complexities that families face. And I think he'll certainly have a greater fluency to understand what a lot of American families experience every day.
Fenton: We can't talk about bereavement policy in the us right now without acknowledging the massive implications of COVID-19 that we're seeing and that are going to continue to unfold for many years to come. How has the COVID-19 pandemic impacted Evermore’s work?
Mulheron:I certainly think it's brought the need to the forefront. And, I think it you know, unfortunate as it is, I think this might be one of the reasons why congress is listening. I will say I started my conversations prior to COVID-19 in January, with both the House and Senate, because we already had epidemics of suicide, homicide and overdose. So, they were already listening. And now COVID-19 is here. And it only punctuates the importance and the urgency that we start addressing this as a societal issue.
Fenton: Casey, you're lending your voice to Evermore as an advocate. But I also want to acknowledge the other important way you're advancing how we come to bereavement in this country. And that is through your work as a filmmaker, and as an actor, and an artist. As we touched on before. So much of our societal understanding of grief comes from how we see it portrayed in the media, which is often really out of step with the reality that many grieving people face. But the roles you take on offers so much more nuance and realism and their portrayals of grief. What role can media play in raising awareness?
Affleck: The storytellers in a society have a significant impact on how people think about all things. And having an audience of any kind is a is a privilege and is a responsibility to, and I wasn't always, I didn't always think of myself in that way, as an actor or writer, director, you know, I spent a lot of years just doing whatever job I could get, and lending myself to whatever story someone else was telling. But, you know, even actors grow up, eventually. And I have, of late, put more thought into the kinds of stories that I tell and what they are saying and what I'm a part of. And the more of that in general there is. And the more aware we are and sensitive about that, how we depict people who we depict what you know, what we're leaving our audiences with? I think that the better off we'll be not, you know, I don't want to overstate it, but I but you know, all, all through time, storytellers have played a role in making their societies better places.
Fenton:And, you have a new film coming out that also has aspects of grief in that. What can you tell us about The World to Come?
Affleck: Ron Hansen andJim Shepard, they're both professors. And they're both novelists. And they wrote a story about two women on a farm in the 19th century, and one of these women has lost a baby and finds it impossible to reconnect with her husband, impossible to feel anything, until she meets somebody new as someone who moves in on the farm next farm over and played by Vanessa Kirby and that… and they have a relationship that surprises both of them; that is one that's sort of comforting, that turns romantic. And I'm, I'll leave it leave it at that. But I think that Jim and Ron did such a… and also sort of the two, the two actors, Vanessa and Katherine, they just, you know, they really put all of themselves into the into this and it explored an aspect of grief that I hadn't considered, which is sort of, you know, what happens to the couple how difficult it is for this couple to reconnect reinvest in their and their relationship to maybe try to move on and have another have another kid if possible. It's very moving. It's based on a short story that Jim Sheppard wrote by the same title.
Fenton: That's something we can look forward to and, lord knows, we need things to look forward to 2021. Casey, you and I are similar and that we both have sort of come to the space of grief and bereavement and raising awareness not having been necessarily prompted by a specific grief experience of our own yet, I think a lot of people assume that personal loss is the only reason anyone would want to get involved in this work. So, what would you say to others listening, who feel like outsiders in the space or who aren't sure if they have a place or a role in this workaround grief and supporting brief families?
Affleck: Well, I don't think that there's any experience that is more universal, you're gonna know someone you're gonna lose. Somebody I remember when I was, you know, a teenager, he lost someone in our family and my mother's boyfriend said to me, something that may sound sort of obvious to adults, but so a 13-year-old was a different way of thinking of things. He said, you know, “Death is a part of the human experience.” And the reason that that, at the time, it meant so much was because we tend to not talk about death. I think we're afraid of it in our culture. So, it feels like something almost shameful. And when that happens, it's difficult to deal with. And it's difficult to support one another. Because we don't really have, I don't know how to talk about it, we don't have the tools, we just were sort of stumbling through it a little bit. And that's okay. But it's nice to have the guidance of others who thought a lot about this and have gone through this to sort of help tell us how we could maybe support one another, and better ways. And I have lost people. Not, you know, there are people who have, I think had a harder time with it and experiences that were more challenging than I have so far. But we all have a stake in this. And that ought to be obvious. You know, it's not for whom the bell tolls, when thinking about bereavement, it tolls for you.
Fenton: And, you mentioned the importance of having guidance as we work to get better at this. So, Joyal, what can people do if they want to support bereaved families?
Mulheron: So if you want to support bereaved families, the first thing I would say is say something. Say, “I'm sorry,” or just be present, and to listen. And, one of the things that I often suggest to people is, in a time of such unpredictability for a family, to the extent that you can support someone else in a predictable fashion. So, if every Tuesday at four o'clock, you go over with an ice cream cone, and you're just there to listen. Even if they don't welcome you in on one Tuesday, they might the next or the next. And I will assure you that many, many individuals feel so profoundly alone. So just knowing that there's someone else who cares and that remembers and who's willing to show up is so valuable and important. So, I mean, to Casey's point and all the other things that we've said here, it's just an act of human compassion, and being willing to sit with your neighbor, or your friend or your family, and just listen and to be present.
Fenton: Joyal and Casey, thank you so much for talking with us.
Mulheron: Thank you for having us.
Affleck: Thank you.
Fenton: Joyal Mulheron is the founder and executive director of Evermore, a nonprofit dedicated to improving the lives of bereaved families. She's also featured in WPSU’s Speaking Grief initiative. Academy Award-winning actor Casey Affleck lends his celebrity to ever more his work as an advocate. To watch the 2020 Evermore Digital Summit, which features Casey Affleck, visit WPSU-dot-org-slash- Take Note. In the weeks since this interview was recorded, bereavement care was included in the federal budget for the first time ever. From my home studio, I'm Lindsey Whissel Fenton WPSU.
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