Dec 9, 2023 | Advocacy, Community, Data Collection, Federal Government
We Have Achieved So Much Because Of You
Ten years ago, no one talked about bereavement‘s impact on us or the trajectory of our lives.
Today, bereavement is highlighted in major media outlets, in the halls of Congress, and in our communities. Thousands of people believe in our vision, which has been humbling and inspiring.
It is all possible because of you.
In January 2020, before COVID-19 came to the United States, we took your stories and quality data to Congress with a message that bereavement was an urgent concern for millions in America. Congress needed to act now.
Together, we made calls, talked to legislators, and secured the nation’s first bereavement provision in the U.S. budget process — and our work had only just begun.
Over the last three years, together, we have continued to make tremendous strides in helping all bereaved people achieve a healthy, prosperous, and equitable future.
Here are just a few highlights:
And, we have so much up our sleeves for 2024!
The Evermore Board of Directors
Jacqueline Corbin-Armstrong
Evermore, Chair
Norman Greene
Princess Hyatt
Donna Mazyck
Joyal Mulheron
Mark Standard
Sep 10, 2023 | Advocacy, Community, Family, Federal Government, Grief
Visionary & Trailblazing Attorney Kenneth Feinberg Offers Five Reflections On Bereavement
After serving thousands of families, victim compensation attorney Kenneth Feinberg offers five reflections on grief and bereavement.
By Joyal Mulheron with support from Maddie Cohen
Visionary and trailblazing attorney Kenneth Feinberg has long been called upon by U.S. presidents, families, and survivors to navigate payouts following mass tragedies. He started his career as a settlement specialist for Agent Orange, but is renowned for his leadership in overseeing the 9/11 Victim Compensation Fund (VCF), where he served families for 33 months pro bono.
On the morning of September 11, 2001, Feinberg was teaching class action mediation at a law school in Philadelphia. By the end of class, the world had changed.
By mid-November, Congress established the 9/11 VCF to compensate the thousands of people who lost a loved one or suffered a physical injury. Feinberg distributed over $7 billion to victim’s families.
During Evermore’s 2020 Digital Summit, Feinberg shared his reflections with Anita Busch, VictimsFirst President, on working with tragically bereaved families from the 9/11 attacks and the many other compensation or memorial funds from other tragedies.
Here are five reflections Feinberg offers for supporting bereaved families:
1) There is no one way to grieve.
Families grieve in different ways. Negotiating trauma yields a range of responses, including anger and disappointment to uncertainty and love.
Feinberg admits that when he accepted his assignment in 2001, he had no clue how emotional the work would be. Granted, the situation was emotional—but the thought of disappointing grieving families felt impossible.
2) Permission to grieve and a commitment to listening.
During these confidential conversations, he notes that families must be permitted to grieve. The door should be open for each individual to share their perspectives about life’s unfairness and to discuss or validate the memory of a lost loved one.
3) Language matters.
According to Feinberg, a less-is-more approach is best. Even people with good intentions risk saying the wrong thing when they try to show empathy after a tragedy. The families of victims and survivors might not want to hear someone else’s take on their grief, no matter how well the other party means.
Feinberg recalls meeting a bereaved father whose two children worked at the Pentagon. The man’s daughter narrowly escaped through a side door, and his son died looking for his sister.
When Feinberg met this father, he said something he deeply regretted.
This is a tragedy,” he stated. “It’s terrible. I know how you feel.”
The man offered Feinberg some friendly advice. “You have a tough job to do,” he said. “But you have no idea how I feel.”
Feinberg learned a life-altering lesson that day. And he cautions others to be careful as well. While intentions are important, language is too.
4) Be transparent.
The attorney recommends giving grieving families all the information they need in a private setting. It’s a matter of protocol, Feinberg explains—but that protocol is an important first step for people in a fragile emotional state. He adds that keeping the door open in this way has been a key factor in the success of programs like the VCF.
From the community’s perspective, Feinberg clarifies that the most important part of a community’s response to tragedy is transparency. Sharing how the greater community can help and how the distribution of compensation or assistance will work. When the world feels uncertain, clarity becomes even more essential for bereaved families.
5) Empathy matters.
No matter what anniversary it is, shedding light on the importance of empathy matters. Families understand the grief they are navigating and recognize that you cannot bring back their loved ones. Genuinely listening and learning about who they’ve lost can help.
To learn more, Feinberg shares his experiences with victim compensation in the books What is Life Worth? and Who Gets What? In 2020, Netflix released Worth, a movie starring Stanley Tucci and Amy Ryan, plus Michael Keaton as Feinberg, showcasing the challenges in the wake of 9/11.
Key resources
Readers can learn more about bereavement care and acknowledge the anniversary of 9/11 by visiting the links below:
Sep 2, 2023 | Advocacy, Community, Family, FMLA, Grief, Parent
A Grieving Parent Turns Pain into a Purpose
Following the death of his teenaged son, Blake, Tom Barklage fought to secure bereavement leave for Johnson & Johnson employees around the world
By Maddie Cohen
After his son Blake died, Tom Barklage took time off to make space for his grief. Little did he know the loss would result in a push to expand his employer’s bereavement care. Today, the high-level manager has made it his mission to change lives for the better.
Grief alters the course of a parent’s life
The death of a child changes a person—and Tom remembers October 30, 2021, like it was yesterday. His son, then 17, was attending an evening gathering with friends when he lost consciousness. A short time later, he died in the hospital of an unknown heart issue: lymphocytic myocarditis.
Tom, his wife Alison, and their daughter Alexis were devastated. Yet Johnson & Johnson (J&J), where Tom has worked for almost 20 years, stepped up to the plate. The company president held a moment of silence in Blake’s honor at an immunology town hall, and Tom’s boss was gracious about his leave. Months later, J&J gave Tom an additional day off on April 7—Blake’s birthday and the day they buried his ashes—and catered a meal for the Barklages and their guests.
Yet Tom struggled. His employer’s official bereavement policy was just five days. And while the pharmaceutical expert could leverage flex days or “take a knee,” those moments his grief became too much, there was little time to process the complexity of his loss.
Not only that, but Tom realized others might not have the same accommodations. Not everyone at J&J had 18 years’ tenure or the flexibility of working in the field.
A push for flexible bereavement care
Tom set out to change J&J’s bereavement policy. He was determined to honor Blake’s legacy and respectfully challenge the status quo.
The process was far from simple—but Tom had to start somewhere. He began by sharing his thoughts with his boss, and then reaching out to J&J’s Vice President of Human Resources. The goal was to bring awareness to the cause. And while Tom’s advocacy sparked discussion, it wasn’t so straightforward. J&J was in the midst of global change, and some stakeholders thought it best to wait a year.
Plus, Tom was still grieving.
Company leaders were skeptical, but the key account manager reassured them. He explained that he was absolutely in his right mind, and that his advocacy was a matter of great importance.
“It helps to have something to fight for,” he explained.
Now, Tom isn’t advocating for a specific number of days off. He is simply promoting a more flexible bereavement policy—for everyone.
Because parents deserve it. And because, in Tom’s words, Blake had a remarkable ability to use the past to make an even brighter tomorrow.
“That’s why it’s so important for me to give back,” Tom says. “I know that if this bereavement policy goes through, the day that I retire from J&J, I can sit there and say, ‘Blake, we did it.’”
On August 1st, Johnson & Johnson released this statement: We all need to step away from work sometimes, and taking time to heal from the loss of a loved one shouldn’t be an additional worry. As part of our newly-expanded global paid leave offerings, every employee around the globe has access to up to 30 days of dedicated paid leave time for bereavement. Learn about all the ways we offer flexibility to enable everyone on our team to succeed at work while also balancing personal and family needs.
J&J Employee Benefits
Honoring Blake Barklage’s legacy
In 2022, the Barklage family started the Blake Barklage Foundation, also known as Blake Gives Back. The nonprofit supports charitable initiatives focused on intellectual disabilities, education, organ donation, and the prevention of cardiac arrest in children and young adults.
Readers can learn more about Blake’s life and legacy by visiting the links below:
Read the heartfelt letter Tom Barklage sent to Johnson & Johnson.
My name is Tom Barklage and I am a J&J employee of 17 years. I’ve valued the culture at J&J as an employee given the priorities its maintained in support of families and patients worldwide for decades. This email is not easy one to write. Last month, on October 30th, my 17-year-old son Blake suddenly passed away from an undetected heart issue. As a parent, this is the hardest thing my wife and I have ever dealt with. I lost my father a year ago and one of my brothers passed away 10 years ago. Losing my dad and brother was tough, but losing my son is gut wrenching. As I write this, I am struggling to see the keyboard through my tears, but I will get through this.
The company policy of 5 condolence days is a policy I am having a difficult time understanding. As you can imagine, when an employee has the unfortunate experience of losing a child, spouse, partner, etc. the ability to
return to work and be productive is almost if not entirely impossible with only 5 days to recover. Grieving the loss of a child is crushing and deeply personal.
I received the recent J&J employee announcement about the new parental leave providing employees paid leave from 8 weeks to 12 weeks. That is great news!! Wonderful policies like this are one of the reasons I love working at J&J! In the Communication it stated that “J&J has a long history of supporting family health because we believe that advancing health for humanity starts at home.” I agree with that 100%!!
The reason paternity leaves are expanding is because someone raised this as an issue to be re-evaluated. Someone had an experience that wasn’t equitable. It started with a conversation and gained momentum from there. That is what I am trying to do. The loss of a child or close loved one is a monumental event that meets or exceeds the emotional/physical needs of a parent/spouse at the time of a birth. I was blessed to be at the birth of my son Blake and daughter Alexis. Losing Blake is so much harder and difficult to deal with. Please do not take this the wrong way. I am not trying to make it about me. My management team whom I work for have been very accommodating!! The support I received from my Janssen family has been phenomenal.
I went back and forth debating if I should send this note to you. I don’t want to come across as being disrespectful or ungrateful towards J&J. J&J has provided my family and I with opportunities that we are blessed to have. I am so happy to be part of the J&J family. But I know my son Blake, he would want me to raise this concern and ask to consider changing the policy to allow for more time for employees to work through their grief process. As I said earlier, it is not just about me. It’s about the other J&J employees too who have suffered loss and are still committed to their jobs and the purpose they find in their work. Our credo states, “We must support the health and well-being of our employees and help them fulfill their family and other personal responsibilities.” I understand that a change like this can’t happen without gaining as much information as possible and ensuring a diverse set of opinions are gained. I would like to be the catalyst for this change and happy to speak to you. Will you and your leadership team consider re-evaluating our company policy on condolence leave? If you would like to meet in person or connect via Zoom, please know that I would welcome that opportunity.
Sincerely,
Tom Barklage
Janssen Immunology
Senior Key Account Manager
Jul 28, 2023 | Advocacy, Federal Government, Parent, Research
The scale and reach of the Maternal and Child Health (MCH) Block Grant—with current appropriations of $712,700,000—is indisputable, as 93 percent of pregnant women, 98 percent of infants, and 60 percent of children are touched. While impressive progress has been made in important benchmarks, including the 25 percent decline in infant mortality since 1997, bereavement remains absent from the MCH Block Grant scope. This omission is notable as the agency’s technical advisement manual to state programs mentions death more than 150 times and supports fetal and child death review panels throughout the United States; however, attending to bereavement or grief in the aftermath of these deaths is not included even once in the Health Resources and Services Administration’s (HRSA) guidance.
Bereavement—the loss of a significant relationship by death—is one of the most traumatic stressors a person endures, and extensive scientific evidence domestically and internationally points to the significant, enduring, and life-altering impacts bereavement has on grieving individuals in the short- and long-term. Similar to the MCH Block Grant program, the scale and reach of bereavement in the United States is extensive, particularly as concurrent mortality epidemics—COVID-19, overdose, suicide, homicide, maternal mortality, traffic fatalities, and the emergence of more extreme and deadly climate events—has left no neighborhood untouched.
Read more: Evermore Letter to HRSA
Jun 29, 2023 | Advocacy, Community, Family, Grief, Research
By Terri Schexnayder
Five new releases have landed in bookstores and audible programs recently. Each one delivers the topics of grief and loss through unflinching honesty with the author’s personal story—some even include moments of humor. We encourage you to read and share with bereaved family and friends these selected books.
Dina Gachman’s self-help book, So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns, was released on April 11, 2023. Since losing her mother to cancer in 2018 and her sister to alcoholism less than three years later, the author and journalist has dedicated herself to understanding what it means to grieve, healing after loss, and the ways we stay connected to those we miss. Publisher’s Weekly called Gachman’s book “a poignant, personal exploration of grief.”
Regarding her esteem for Joyal Mulheron and the nonprofit she founded, Evermore, Gachman said, “after going through a traumatic in-home hospice experience with my mom, I was so happy to discover Evermore, and find out that there are people out there trying to reform bereavement care in the U.S. Until I went through it, I had no clue how emotionally, physically, and spiritually depleting and devastating it could be. I was so moved by Joyal’s story, and by the stories of others I spoke to for the book. So many of us out there are suffering through caregiving or the loss of a loved one, with little help, and Evermore’s mission is one I fully embrace. We need more help and more understanding around death, grief, and loss at home, at work, and as a society.”
In an excerpt from Gachman’s chapter about hospice, the reader learns more about Joyal Mulheron’s own struggles with the system after the loss of her infant daughter Eleanora:
Bereavement care in America is broken, if it even exists, says Joyal Mulheron, founder of Evermore, a nonprofit focused on improving the lives of bereaved families through research, policy, and education. … She saw firsthand how “broken” the system was when insurance companies would call her during her daughter’s pediatric in-home hospice and ask how many days or weeks it would be until her daughter passed away. Mulheron said she had twenty-three providers, but she was the one doing the caloric calculations, making sure her daughter was getting enough nutrition to keep her comfortable. … During that time, the company she worked for asked for her resignation, since she was caring for her daughter and could not devote herself to the job as she once had. Now, she is working to change those systems that were so broken for her, and for so many others.
After avoiding her grief from the loss of her father to bone cancer when Laurel Braitman was a child, the New York Times bestselling author eventually faced—and embraced—her pain in her thirties. What Looks Like Bravery: An Epic Journey Through Loss to Love, released by Simon & Schuster on March 14, 2023, is referred to as the “hero’s journey for our times.”
Her literal journey through mountainous regions, encountering life-threatening wildfires, and visiting with others about their grief along the way, Braitman’s powerful memoir “teaches us that hope is a form of courage, one that can work as an all- purpose key to the locked doors of your dreams.”
She shared how she, like so many of the children she met with, felt shame after their loss. “I became a facilitator to help grieving kids who lost siblings or who were ill … What I learned from them was that shame is really just another way to control the uncontrollable.”
Released on April 4, 2023, A Living Remedy: A Memoir by Nicole Chung, a Korean-American writer who was adopted by white parents is personal and addresses an important topic. Chung not only writes about the loss of both her father and mother to illness within the span of a few years but tackles the issues of class and the inequities of medical care in the United States. She witnessed this firsthand, especially when her father was dying, noting his death was “no doubt exacerbated by his lack of health insurance and limited access to care in the small Oregon town” where Chung grew up.
Chung shared an interview with LitHub journalist Hannah Bae. “I felt compelled to write about grief but also this common American experience, where so many people in this country who are not fantastically wealthy end up facing illness or loss without all the resources and support that we need.”
On Grief: Love, Loss, Memory by Jennifer Senior, released on April 4, 2023, is based on an intriguing story around the journal of a young man Bob who died on 9/11 at the World Trade Center. Atlantic writer Senior interviewed Bob’s parents after his death. Years later, she shared with NPR’s Rachel Martin her desire to find the truth behind why the journal ended up with Bob’s fiancé Jen rather than his mother. “[His mother] was so upset and said, ‘How can you give away the last thing our son ever wrote?’ It was – it is a chance to have – to hear his voice one more time, to, in a weird way, be in conversation with him …”
The nagging question for Senior became, why didn’t Jen give the journal back when Bob’s mother asked for it? On Grief answers that and provides a larger conversation about the book’s title.
The Archaeology of Loss: Life, Love and the Art of Dying by Sarah Tarlow, released on April 20, 2023, shares the archaeologist’s shock and grief when faced with the sudden loss of her husband Mark. Called “a fiercely honest and unique memoir,” it reveals how nothing could have prepared Tarlow, after years of studying death in her research, for the loss of someone she loved. About writing her memoir, Tarlow said:
“When you find your husband lying dead, you think you will not forget a single detail of that moment. As an archaeologist, I like to get my facts right … I am excavating my own unreliable memory. I cannot go back and check.”
Resources:
So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns
What Looks Like Bravery: An Epic Journey Through Loss to Love
A Living Remedy: A Memoir
On Grief: Love, Loss, Memory
The Archaeology of Loss: Life, Love and the Art of Dying
Time: How to Connect with Loved Ones After They Die
The Guardian: The Archaeology of Loss
WNYC Memoir About Avoiding Grief
NPR: Grief Book Has Its Roots in the Long-Lost Diaries of a 9/11 Victim
LitHub Nicole Chung on Writing Through Grief and How to Begin Again
Jun 29, 2023 | Advocacy, Community, Family, Grief
By Jena Kirkpatrick
Jason Edwards grew up in the small town of Graham in West Texas where being gay was not accepted. Pegged as the class ‘gay boy,’ he was bullied relentlessly. His dad tried to spark his interest in sports and Edwards recalled being out on the field spinning around like Wonder Woman. “I was always different,” he said. On June 7, 2000, Edwards’ sister, Bella, was killed in an automobile accident. “It was like a part of me had been cut off—and I was just bleeding,” he said.
Edwards and Bella were queer siblings. They had an inseparable relationship, supporting each other throughout their lives. “I knew if she was a part of my life, I would always be OK. And then, I was not. I was not OK at all,” he shared. Edwards described the physical feeling of his sister’s loss as if his life source had been pulled out of his chest and replaced with an uncontrollable shake. He stopped writing for years, stopped calling his friends and became a recluse. Eventually, he ended up moving to start his life over because he could not handle the memories.
“There was no help for me,” said Edwards. He found his anger and sadness to be something unlike anything he had ever experienced in his life. The Psychological Bulletin reported in November of 2011, “Experiencing the death of a loved one during childhood or adolescence has long term effects on biopsychosocial pathways affecting health.” Navigating this loss was compounded by his schizophrenia. Edwards said he is not ashamed of his condition, but when a schizophrenic experiences a trauma, they need extra help. “It is ridiculous, it is awful. Public healthcare is a joke—you sometimes wait eight hours to see a doctor for fifteen minutes,” he said.
Edwards believes it is a human right to have grief counseling and healthcare. He continues to deal with complex trauma, experiencing a heart attack and multiple heart issues in the last few years. The Journal of the American Medical Association noted, “Sibling death in childhood is associated with a seventy-one percent increased all-cause mortality risk among bereaved persons.”
Edwards now lives in Austin, Texas, with his husband Matt. In June of 2015, same sex marriage was declared legal in all fifty states. They were engaged that month and married in August of 2016. “We felt that we deserved the same right to be legally married as anyone else did,” said Edwards. This Pride Month has been about spotlighting our queer brothers and sisters and continuing to highlight the societal shifts occurring in our country.
However, on June 22, 2022, the Texas GOP adopted an anti-LGBTQ platform declaring that being gay was ‘abnormal’, which opposes all efforts to validate transgender identity. This year, Texas lawmakers passed bills banning puberty blockers and hormone therapy for transgender kids and restricting the college sports teams that trans athletes can join. Edwards remains optimistic. “When I am at work, I see parents come in with t-shirts that say, ‘Protect Trans Kids.’ The world is changing, and I think we are winning. It is just an uphill battle.” The fight for bereavement care is an uphill battle as well. Being bereaved with no care only compounds the pain of marginalization.
And there are still so many people who do not understand what it is like to be marginalized. If we all woke up tomorrow and the world was different, men were supposed to be with men and women with women, maybe then people would understand how alienating it feels being the minority. Then people might understand how natural it feels to be with the one you love. Oscar-nominated actor Elliot Page said, “This world would be a whole lot better if we just made an effort to be less horrible to one another.”
Edwards remains optimistic and hopeful that our future has no prejudices, a world where understanding and acceptance replaces hate. He tries to fill his days with beauty, love, friends, art, poetry, music, and good food. “We are all rushing towards death. We just need connection,” he said. “What would happen if we all put our differences aside? We could make real change. If we take the time, we can find something in common with everyone.”
