Space to Grieve: One Woman’s Courage to Take On a Broken System

Estimated reading time: 12 minutes

After navigating the loss of her terminally ill child, Joyal Mulheron sets out to change the landscape for bereaved families

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Grief has been an integral part of my life and identity ever since the sudden death of my father, when I was fifteen. After losing my mother this past summer, I learned about Joyal Mulheron from a mutual friend. Joyal’s story and the work she and her non-profit are doing around grief and bereavement care moved me profoundly—enough to write this article. In the midst of our nation’s current grief epidemic, I felt compelled to share this extraordinary journey and one  woman’s determination to change a broken system.

Joyal Mulheron has a warm smile, a hint of sadness behind her eyes, and a steely determination to bring about a seismic change in bereavement care. 

Her passionate dedication to helping make grief and bereavement more manageable for those who have lost loved ones is rooted in her own family’s experience. After becoming parents to two healthy daughters, one adopted from Ethiopia, Joyal and her husband had a third daughter.

Eleanora’s birth — and death — changed her family’s life forever.

Eleanora was born with a chromosomal abnormality that affected her entire body. It was so severe she wasn’t expected to survive for more than a few hours. She ended up living for almost five months, thanks in no small part to Joyal, who had a background in science and took on the monumental task of orchestrating and administering her care. “Honestly, she would have near-death episodes frequently, sometimes multiple times a day — it was very intense and so incredibly complicated. I was doing her drug compounding. I was figuring out her caloric intake. When she died, we had 23 medical and home providers. I was the care center. I knew everything she needed and how much she could manage.”

The physical trauma was only one part, though. As Joyal was carefully managing her daughter’s health care, she also was preparing for the inevitable. “I can remember holding her on one side and the phone on the other, negotiating the rate for her cremation. And I’m thinking how wrong it is that I cannot be fully present for my baby when she needs me most.“

That was the beginning of Joyal’s conviction that something was terribly wrong with the bereavement system. 

She talks about appalling phone calls she got from her insurance caseworker, asking, “Do you think she’s going to live for ten days? Or do you think she’s going to live for more than ten days? Because I have to fill out different paperwork.” 

The broken systems and trauma that Joyal experienced — before and after Eleanora’s death, fueled her drive to bring about change in bereavement care.

After Eleanora died, Joyal experienced the dysphoria that affects many bereaved family members. She couldn’t remember if she’d showered or eaten.According to a 2015 New England Journal of Medicine review, newly bereaved individuals experience: “dysphoria, anxiety, depression, and anger…physiological changes such as an increased heart rate or blood pressure, increased cortisol levels, sleep disturbance, and changes in the immune system.” Neighbors found her wandering outside in the cold with no coat. She lost her ability to focus on self-care and had no idea how to look for a therapist or a support system to help her through the intense fog. 

In time, the pressure to get back to “normal” was mounting. When a health policy advisor position at the Partnership for a Healthier America came Joyal’s way, she initially rejected it. Eventually, she accepted the opportunity to further healthy eating and end childhood obesity. Despite the familiar pull of work’s intensity, she was still struggling with her grief and achieving some semblance of normalcy after losing Eleanora.

Ultimately, following a flood of traumatic national events that stunned the nation, Joyal decided to leave her job.

“Trayvon Martin… and the Sandy Hook massacre and the Chicago homicides. I just remember thinking something has to exist to support people. It’s too much. So many families need help.”

After she stopped working, Joyal got very ill for about six months — which is not uncommon for bereaved parents. In retrospect, she knows it was essentially a delayed reaction. Scientific evidence indicates that bereaved parents are more likely to suffer more depressive symptoms, poorer well-being, less purpose in life, more health complications, marital disruption, psychiatric hospitalization, and even premature death.

When she came out on the other side of her illness, her husband and family encouraged her to focus on researching and transforming bereavement care. “When I started exploring the idea,  I put on my sneakers and walked around different communities, and people invited me into their lives. At the police station, at the church, at all these places, people were sharing their stories. Very quickly, the scope of this problem became abundantly clear to me.”

In 2014, Joyal founded Evermore, a nonprofit dedicated to making America more livable for bereaved families. “At first, I was only going to focus on the implications of child death on American families — it was what I knew best. But it was impossible to ignore all the concerning data around sibling death, around the long-lasting effects of premature death of any kind.”

Research shows that bereavement causes significant health declines, even early death among some survivors, including bereaved parents, siblings, and spouses. Yet, our nation spends little to no funding to support the health of family members in the aftermath of the loss of a loved one.

As Joyal learned more about death and its fallout on surviving family members and America’s failure to support them, she began compiling data on grief statistics and resources. She established a platform for the bereaved to connect and share their stories.

The staggering statistics and personal stories on Evermore’s website powerfully detail the emotional, physical, and sometimes economic toll of losing a loved one and myriad ways in which the nation’s systems fail to help the bereaved cope. An estimated 18 million Americans have experienced the death of a child, 10 million American children have lost a biological parent or sibling, and black Americans are at least twice as likely to lose a child or sibling. And this was before the Covid pandemic. As Joyal explains, “A significant bereavement event for an individual threatens their health, their well-being, their economic solvency, and the family stability.” Evermore began to highlight the need for revolutionizing the way our society handles death and bereavement — from supports for the bereaved to training for law enforcement, medical staff, first responders, teachers, insurance caseworkers, death investigators, friends, and neighbors.

Compartmentalization was and is sometimes a brutal challenge for Joyal — still grieving the loss of Eleanora while dealing with the facts, and figures, and faces of bereavement — along with the challenges of getting a nonprofit up and running.”The first three years were so challenging.  I had to be careful — I’ve gotten much better at it — there are times when I must put up the guard rails because I know — I’m going to have this conversation — and I can’t jump into an accounting meeting afterward. There have been a couple of times I’ve almost walked away because the pain is just too great.”

Eventually, besides supporting grieving family members and consolidating data around death and bereavement, Joyal put her policy background to work. Evermore began examining American society’s systemic shortcomings surrounding bereavement — and imagining the possibilities of policy reform to enact meaningful change. 

“One of the things that I’ve learned in doing this is people don’t even realize that they have rights when it comes to losing a loved one. Shifting the public conversation, getting to that realization, ‘Oh, I had a right not to lose my job’ or ‘I had a right not to be treated in a certain way’ is paramount.”

When it comes to death and grief, the impacts disproportionately affect communities of color, exacerbating the health and healthcare disparities that marginalize our nation’s most vulnerable children and communities. “I often say we’ve made strides in palliative care and hospice because that’s where white people die. Families share astonishing stories, and the status quo is unacceptable,” she says. When she meets with Members of Congress on both sides of the aisle, she walks them through a series of alarming statistics. 

Grieving kids have more school failures, lower attainment, increased challenges academically. They have drug abuse issues, violent crime involvement, youth delinquency, suicide attempts, suicide completions, premature death to any cause, and sometimes psychiatric episodes. Black children are three times more likely to lose a mother and twice as likely to lose a father by age 10 when compared to white children. More than half of bereaved and orphaned children in the US are not receiving their social security benefits. And only a tiny percentage of bereaved children receive food assistance. Those are substantial social failings with long-lasting ramifications.

One study reported that 90 percent of juvenile justice detainees report a loved one’s death before being incarcerated. Policymakers are beginning to realize that suicide, juvenile justice, substance abuse — may be outcomes of an event that no one is even examining.

Addressing the racial inequities surrounding bereavement care is one of the most important things that could come out of Evermore’s advocacy. Calling, writing, and meeting with Members of Congress and other leaders on both sides of the aisle, Joyal and Evermore’s robust advocacy efforts resulted in considerable success — the addition of bereavement care language to the FY21 Appropriations budget. 

“We got on the House side last March, and then the Senate released their companion bill later in the fall. Then those two bills were woven into an Omnibus. We were very fortunate — our language got in — it’s the first language that directs Health and Human Service agencies to report what they’re doing about bereavement care. There’s no price tag attached to it right now, but in the future, we hope the federal government recognizes bereavement care as important as other pressing social issues. This year, we’re beginning to work on setting a national benchmark around what Bereavement Leave should look like and following up on the language from last year.”

Joyal Mulheron speaks out on the case for Bereavement Leave

The case for Bereavement Leave made by Evermore is both compelling and timely. As they report, the unexpected death of a loved one is the most common traumatic experience for Americans. Many say their loss is their worst life experience. Employees who need time off work to grieve and cope with a loved one’s death have no legal right to take leave, with narrow exceptions in two states and two localities. Bereavement is not acceptable grounds for taking unpaid leave under the Family and Medical Leave Act, despite recent efforts to add bereavement to this law. While many employers offer bereavement leave, it is often only a few days, which is insufficient time for most employees to return to work and productivity after a family member’s death. As our nation faces the coronavirus pandemic, drug overdoses, suicide, and mass gun violence events, employers are having to acknowledge grief and its implications for families while staying solvent and productive. It is a difficult balance for employers to strike. To address these needs and set national standards, Evermore recommends employers institute a bereavement leave benefit.

Joyal says that most employers do what they can to help, but a few have only extended leave under the threat of public opinion.

As she works to enact Bereavement Leave legislation, Joyal has a more immediate goal. “My hope is that we can establish a White House Office of Bereavement. To me, that is one of the most urgent public policy calls. The White House office is an executive action, which doesn’t require Congress to act. It’s a fiscally wise move since, with a few staff members, you can begin marshaling the full power and authority of the US government, and it provides a coordinated and centralized response immediately for the American public.”

President Biden’s personal experiences with grief and bereavement could heighten the opportunity to advance bereavement care during his administration. At the end of April, Biden’s American Families Plan included a three day Bereavement Leave. A heartened Joyal says, “the measure still needs Congressional approval, but this is a HUGE step forward for America’s families.” But as she points out, “Grief and bereavement know no party — and shouldn’t. No one is immune. Yes, there is leadership experience, and I also think about the sheer time we’re in — the concurrent epidemics of Covid, suicide, homicide, mass casualty events, and overdose. It certainly helps to have that lived experience because once it’s personal, you understand it differently — just like anything else.”

Evermore’s mission is rooted in emotion. But Joyal must still face the logistical challenges that come with running a nonprofit.

“It’s largely a volunteer effort, so we’re starting to do fundraising. I’m out there and talking to key people in a targeted way, but now I must bring the funding. I’ve got to build the organization in a way that allows for Bereavement Leave and law enforcement response, and data systems, among other things. And we don’t want to lose sight of how to help people with grief — a whole other set of necessary supports.”

The issues surrounding bereavement have never been more universal.

Amid this year of unimaginable loss, society has focused on collective experiences of grief in unprecedented ways. Model, actress, and social media sensation Chrissy Teigen started a national conversation about society’s aversion to publicly acknowledging death and bereavement when she posted hospital photographs taken of her, her husband John Legend, and their son Jack, who died as a baby prematurely. While some reacted negatively to her incredible transparency throughout the process, Teigen beautifully defended her position — and her decision to share her experience gave grieving moms throughout the world the chance to connect and commiserate.

Kaye Steinsapir recently tweeted the experience of losing her 12-year-old daughter, Molly, following a traumatic brain injury. The outpouring of support helped sustain her. “When I’m sitting here in this sterile room hour after hour, your messages of hope make me feel less alone,” she told her followers. Her story cut through the noise and negativity of Twitter, bringing grieving parents together as they sought to support Steinsapir.

The recent Netflix film, Pieces of A Woman, is a raw portrait of a mother navigating grief after her daughter dies minutes after being born. Writer Kata Weber based her wrenching screenplay on her tragedy. Vanessa Kirby’s vulnerable portrayal of the bereaved mom earned her Golden Globe and Oscar nominations. Much like 2016’s Manchester By the Sea, Pieces of A Woman ruthlessly depicts the emotional upheaval that comes with loss. The film’s stars, Kirby and Ellen Burstyn, recently spoke with Joyal. In an incredibly moving conversation, the three discussed the importance of movies like this — their potential to educate the public while allowing those grieving to feel they are not alone.

Most importantly, Joyal wants bereaved individuals and their families to understand that they are not at fault. “There’s validation that this tragedy has many tentacles that influence their life. We don’t have the right responses as a nation. Compounding traumas can send individuals and families into tailspins that today they believe is their own doing or fault. It’s so overwhelming. All of them need to know — this isn’t your fault — our society needs a social paradigm shift.” She takes a deep breath. “It means so much to me to get this right for families.” 

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You can learn more about Evermore and their initiatives here — and find out how to donate here:  https://live-evermore.org and can follow them on Instagram or Facebook

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You may also enjoy reading Life After Death: Healing Grief, Redefined, by Sarah Nannen