Mar 18, 2024 | Community, Family, Grief
PAUSE: Producing Safe, Culturally-Specific, Expert-Informed Grief and End-of-Life Resources Across America
How three Black-led grief organizations are building resources for communities of color through education and conversations.
By Nora Biette-Timmons[
In the summer of 2020, after the police killing of George Floyd sparked nationwide protests over entrenched racism and inequality, Alica Forneret paused to make a decision. Her career was already focused in grief spaces; after her mother’s sudden death in 2016, Forneret faced further difficulty when she returned to work and received little in the way of institutional support, something she set out to change through education, conversations, and community building.
But following the massive outcry over Floyd’s unjust, public death, she pivoted her work to focus on typically underserved demographics, and founded PAUSE with the mission of creating “spaces that produce safe, culturally-specific, and expert-informed grief and end of life resources serving Communities of Color.”
Black and other historically-marginalized or excluded communities in the U.S. face additional burdens when it comes to grief and the grieving process. “For many people of color, the fear, exhaustion and constant grief that all come from regularly dealing with various forms of discrimination are compounded when additional trauma piles on,” Forneret wrote in a HuffPost article about a year after launching PAUSE.
On top of that, Black folks disproportionately face experiences that cause grief, especially at a younger age: Compared to whites, Black Americans are 20 percent more likely than whites to lose a sibling by age 10; 50 percent more likely to lose a sibling by age 60; and three times more likely to lose a child before 70.
It’s these facts, and the further difficult realities that individuals face after losing a loved one, that Forneret wanted to respond to.
She told Evermore that her organization is exploring the tough questions: “Why [are] end-of-life-related outcomes and experiences different for people of color — and more importantly, how do we enhance that experience by centering identity?”
When drilling down into specifics, she said that PAUSE is seeking answers to queries like, “Why isn’t hospice as utilized by certain communities? Why do terms like palliative care not resonate with, alienate, or turn off certain communities? Why aren’t folks in healthcare settings currently making more culturally-specific referrals? Why are certain professions nervous about referring to doulas, healers, or creatives in the deathcare space?”
“These aren’t new questions, issues, or challenges,” she noted, but said that PAUSE is “hoping to achieve [new] ways of tackling them with different voices and perspectives at the forefront.” The end result, the changes, “come after asking those questions—it’s our hope to create new types of containers to not only have the discussions, but to also create sustained collaborative projects to address the answers.”
So far, PAUSE has developed an incubator of sorts for grief workers to pool their brain trusts and expand their reach. The Starlight Business Development Residency centers “people who are already doing the work in the community. We don’t want to recreate the wheel or take up space where others are already making impact,” Forneret told Evermore. The residency seeks to meet the needs of people of color who work in the deathcare field, who reported that most of the trainings and resources they had access to “were majority white-centered or highlighting western practices that didn’t fit with that didn’t fit with their way of thinking about the ways they wanted to run their business or serve their clients.”
PAUSE’s initial Starlight Residency welcomed 12 end-of-life entrepreneurs for six months; its second iteration, which launched in February, is getting even deeper: For 12 months, the residency will bring together six Los Angeles-based deathcare workers—from a variety of backgrounds, including the arts, coaching, and healing work—to connect, strengthen their skills, and expand the ever-growing community of BIPOC-focused grief facilitators and counselors.
That, she said, is her ultimate goal in her work. “My favorite person to talk to at a conference or a workshop is the person who says, ‘I had no idea I could find a Black, queer, LA-based death doula to refer my client to—can you make an introduction?’” Recognizing the intersectionality of the bereavement process is crucial, she said. “The most incredible impact we can make will come from being open to expanding our networks and acknowledging who can serve our clients best even if it’s not us.”
Dr. Julie Shaw, the founder of Hello I’m Grieving, participated in the inaugural Starlight Residency, and cites Forneret’s work as a guiding light and an inspiration: It “played a pivotal role in both my personal and professional growth,” she told Evermore. Each partner in PAUSE’s work “brings unique expertise to the table, making them invaluable resources within” the death and grief community.
“A crucial form of support” for this type of work “lies in fostering partnerships,” she said, highlighting the importance of PAUSE bringing people together. “This involves not only collaborating with fellow leaders in the grief space but also engaging with professionals from diverse industries who can contribute to the elevation and transformation of death and grief conversations.”
Shaw’s own journey in this space began when her sister died of Lupus in February 2020 but, she told Evermore, “It was only after months of introspection that I finally acknowledged my own grieving process. Taking a moment to ‘say hello’ to my grief, I wanted to extend that acknowledgment to others who may be experiencing similar pain.” To do so, she made T-shirts with the simple statement, which “became conversation starters wherever I went,” Shaw said, “prompting individuals to share their own stories of loss.”
These connections prompted her to train as a grief counselor, and now she works with companies to “help cultivate empathetic leadership, provide resources for supporting grieving employees returning to work, and offer guidance for grievers navigating their professional and personal lives after loss.”
In her practice, Shaw rejects “the idea that discussions of grief must always be somber,” and “draws from my background in athletics to offer motivation and coaching for individuals to navigate their grief journey while striving for personal growth.” As a gay Black and Filipino woman, Shaw told Evermore that she recognizes “the significance of…the intersectionality of grief with our identities” and how these inform “the way we experience and express grief, as well as how it’s perceived by others.”
The perception—or lack thereof—of grief is a subject that’s close to the heart of Nefertiti Moor, the founder of Dearly Bereaved. “Within the Black community…our grief is often swept under the rug and meant to be forgotten,” she told Evermore. “Most jobs don’t give bereavement leave, so a lot of us are ‘sucking it up’ and proceeding with life as if we are okay and we usually are not.”
Her work focuses primarily on “alternative deathcare” for the Black community, which she describes as “a more natural and aligned approach to what our ancestors did for our loved ones” that is rooted in “connection, love, and comfortability for the dying.” A large portion of this requires bridging the gap between many “alternative” practices that are often “whitewashed”; Moor makes sure she is in “more deathcare spaces” to offer outreach to grieving people who may not “feel very comfortable connecting with someone who doesn’t look like them or cannot connect culturally.”
Beyond her services like living funeral planning and grief meditation, Moor also offers guidance about navigating home funerals and green burials. These tools not only allow loved ones to grieve in spaces that are comfortable and familiar, they can cut down on the often-shocking expense of dying in America.
Like many burdens in America, the impact of grieving disproportionately affects communities of color—and, as Forneret expressed in her writing, these traumas are compounded by other, existing, ongoing injustices. That’s what makes work like her’s, Shaw’s, and Moor’s so important: It speaks to the specific needs of these communities, which are often pain points, but as Shaw told Evermore, can be infused “with empathy and even moments of fun” as the bereaved remember their late loved ones.
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Feb 23, 2024 | Community, Family, Grief
Bo-Hawg & Evermore, A Love Story:
A Deep-Fried Meaning Found in Grief
How Bo-Hawg owner Greenberry Taylor injected Evermore into Pig Fish’s DNA
Grease popping, no breeze, standing in direct sunlight, lifting coolers with 50 pounds of grouper, hands coated in cornmeal and batter, and a heat index of 107. Ah, those were the days.
That’s what it was like cooking seafood with my pops. My man LOVED this. A big reason is because he did this with his dad growing up. Later in life they began volunteering their services (and fish) as a way to help raise money for youth sports in our hometown. They would fry grouper, boil peanuts, boil shrimp — you name it, they did it.
So, it was only natural that my siblings and I grew up sharing this tradition with him. My brother and I even fried the fish, boiled the shrimp, and made the west indies salad for my wedding rehearsal dinner. Swear to god we were both back there frying fish as guests were walking up.
Anytime someone was strategizing how to raise money for their non-profit or event, pops was first to volunteer. “I’d like to donate the seafood and my services,” he’d say. People knew his reputation for frying up some of the best damn fish you’ve ever had in your life, so they were as happy to accept.
When he volunteered though, it meant we (his kids and whoever else he could wrangle) were also volunteering. My brother tells great stories of times my dad would casually say, “We’re cooking for so-and-so this weekend. It’s about 200 people.” Usually, he told my brother mid-week. Classic. He cooked for local churches, sports events, and individuals, but I will always remember cooking for Children of the World.
Children of the World, a non-profit that is an intercountry adoption service that places children in adoptive homes in Alabama. From my memory, I always remember this being in July. And to quote my man Stevie Wonder, it was hotter than July outside. Standing next to two, 30-gallon fryers with the butane fueled flames roaring so loud it sounded like a heavy breeze running through a tunnel just turned the temp dial up higher.
But my dad loved it. He loved the people that ran it. He loved what they did for kids and families. He always looked forward to this event, even though it was a lot of work.
What he did not like was the recognition. Pops never volunteered for the shine. Never to hear the words, “We’d like to thank G.B. Taylor for cooking.” In fact, I remember one time when they surprised him with an award in front of a ton of people. While he appreciated it, being recognized made him cringe. I’m pretty sure when they handed him the mic he said, “I don’t want this.”
I say all of this to let you know that giving back was something my dad was passionate about. I knew when I launched The Bo-Hawg that parts of him needed to be embedded in the fabric of who we are.
That is how I found Evermore.
I created a spreadsheet of nonprofits that focused on grief and/or bereavement. All-in-all I probably looked at 50. Next to each were their 2-3 sentence elevator pitch/mission followed by a transparency score or status (e.g., silver, gold, platinum, etc.). Looking at those scores and status awards, it was bananas how many shitty organizations there are “dedicated to grieving.”
GRIEVING! Literally one of the most jarring life experiences a human can face, and people are taking advantage? Truly disheartening.
My obsession with transparency stems from my time as a journalist. I never approached a story thinking I would be lied to; however, I always was conscious of the potential and therefore would do deep dives. Sometimes my notes really did look like that Charlie Day meme where there is red string spiderwebbed across a board and psychotic grin to match.
I also had just finished watching Telemarketers, a documentary that examines those bogus call centers that push charities. It is truly wild, and I recommend it if you are into those true crime type docs.
Apologies for the detour, back to finding Evermore.
I knew I wanted to team up with an organization that was “in the shit.” By that I mean people working, grinding, and making every effort to provide resources to those dealing with what I was (and still am) going through. Some non-profits are hands off, which is not a bad thing. But my experience is standing next to fryers in July, so I wanted someone in that same headspace.
And honestly, Evermore was not who I was expecting we’d link up with. They are big picture thinkers who are grinding to make nationwide change on a policy level for bereaved people. They have been featured in The New York Times, The Atlantic, on Good Morning America, and more!
“Surely these people will not have time for a small-time company like us,” I thought. “They’re just plug-and-play (meaning hands-off) at this point, and our small potatoes won’t mean anything.”
But the language on their site sounded so authentic, so personal. I could feel how they were talking about grief and loss and the indescribable f**king fallout that comes after losing someone. They even have this line on their mission page that says, “We need more than thoughts and prayers.” That’s exactly how I feel!
And to top it all off, they use data and science to help them push change. That is LITERALLY what I did for nearly 10 years of my life as a research scientist focused on patient-provider communication, mental health and emerging adults, and similar projects.
So, just like Travis Kelce…I shot my shot and sent an email to one of those generic addresses listed on a website. Two days later, I received a response from one of their team members, Jena, asking if we could set up a time to talk.
At this very moment, I am moved to tears thinking about that first call with Jena. I was totally expecting her to be all business with questions about what I could contribute financially, how things would work legally. I imagined it was going to be real sterile. Instead, she started the conversation out by saying this:
I read the story about the Pig Fish and your dad. It’s so wonderful that you created this for him. Can you tell me about him?
Seriously, I am sobbing reliving that moment. I couldn’t believe a few things, the first being that she read my website, the second that she wanted to hear about my pops. Man, I was taken back. I am pretty sure I got choked up because until then, sharing my pops with the world was just me writing and posting on social media. I was never really asked about him by a stranger.
The conversation we had was so beautiful. I talked about my pops and what I was going through in the wake of his death. She shared her own story of loss, which I will refrain from telling since it is not mine to share. And then, we talked about music and storytelling.
Jena explained that they imagined using the donations from The Bo-Hawg to put toward storytelling. She told me about Evermore’s belief in sharing others stories and the power that it holds. Given that my dad was a storyteller, and I am a storyteller, it could not have seemed more perfect.
“We don’t have a lot of sales right now, and I am really not sure when or if it will take off,” I admitted to Jena. “We aren’t worried about the money,” she said, “we just appreciate you thinking of us.”
Boom! Another moment I couldn’t believe was happening. She really didn’t care that we were small potatoes. It didn’t matter that our contributions might be small or large. What was important was that we shared the same values about helping those with grief.
The last 15 minutes we talked about the Grateful Dead and how Jena met her husband, how she got to see Billy Strings (a Pig Fish favorite) before he blasted into stardom, although she admitted he has always been a prodigy. I learned more about Joyal, Evermore’s founder. She is a badass, be sure to check her out!
The conversation wrapped with me communicating that The Bo-Hawg was not interested in promoting our relationship with Evermore on a large stage. That means no advertisements saying, “Part of all proceeds go to Evermore…” More and more on social media you see brands that advertise their contribution to a cause to move weight.
“Buy a shirt, plant three trees.” Or, “Save the turtles, buy a bracelet.” I am not knocking brands that do this. Heck, I imagine a lot of good does come from them! But my DNA for giving is the same as my dad’s. We are not doing it for the shine or to push our product. We are doing it because we care and want to help out an organization whose mission we believe in.
This post will be the only place on the site where I acknowledge our relationship, or whatever you want to call it. Its existence will only be known to those who purchase a product, talk about it organically, read this post, or if Evermore decides to share.
I am not an idiot. I know that at some point I might talk about our partnership if asked. Or we could collaborate on a design where all proceeds go to Evermore. If that does happen, please refer to this post. To quote Sean Carter, who will sometimes use verses from Christopher Wallace’s songs, “I say a B.I.G. verse, I’m only biggin’ up my brother.”
In other words, if The Bo-Hawg is talking about Evermore, we are doing so to raise visibility for them and their cause. Yes, a natural bi-product will be that our brand awareness might jump, but that’s just how it is. It’s not our goal or motive.
The Pig Fish is a cool design. I love it. It reminds me of my pops every time I see it. I love that people are wearing it. But I want it to have a deeper meaning, something that pops would stop and say, “That’s really cool. I’m glad it’s helping.”
I will close by saying that my mission will always be for the Pig Fish to evolve. Injecting Evermore into its DNA is just one way I believe that can happen. It also is awesome that this part of the evolution has pops in it.
Dec 10, 2023 | Advocacy, Family, Federal Government, Uncategorized
Congress Recedes on Bereavement Leave in the FY24 National Defense Authorization Act
Over the last few weeks, many of you called your U.S. Senators seeking their support in allowing the U.S. Armed Forces to return home when their parents die. This bereavement leave would be an added provision to last year’s National Defense Authorization Act (NDAA) language that allows the U.S. Armed Forces to receive 14 days of paid bereavement leave for the death of a spouse or child.
The U.S. House of Representatives sought to expand bereavement leave for the deaths of servicemembers’ parents, but the U.S. Senate bill did not include the same provision.
To reconcile the differences between the House and Senate versions of the bills, Congress determined that U.S. Armed Forces members would qualify for leave under current leave options provided to servicemembers, and they issued the following statement:
The conferees note that the section 622 of the National Defense Authorization Act for Fiscal Year 2022 (Public Law 117- 81) created bereavement leave as a codified benefit for members of the Armed Services to ensure that no member could be denied paid time off following the death of a child or spouse. This benefit was a compromise borne out of a separate legislative proposal, section 622 of H.R. 4350, the National Defense Authorization Act for Fiscal Year 2022, as passed by the House of Representatives, that would have guaranteed paid leave time for parents who lose a child if the servicemember’s parental leave had already been approved but not yet fully used. But that proposal would not have provided any guaranteed paid leave for parents who had already used their parental leave, and it would not have provided any guaranteed leave for members following the death of a child after the child’s first year of life, as parental leave was required to be used within a year of the birth or adoption of such child. Section 622 would also not have provided any guaranteed time off for members upon the death of a spouse.
The conferees note that bereavement leave was never intended to create an entirely novel statutory entitlement to cover any loss that a servicemember might face, but rather to ensure that members who face the most difficult loss, the death of a child or spouse, could not be denied leave time to grieve such death. The annual leave policy under section 701 of title 10, United States Code, provides a generous benefit for members to take leave for personal reasons, including personal loss. Such statutory entitlement is bolstered by standing Department of Defense policies that provide for emergency leave, advance leave, compassionate reassignment, and many other policies supportive of servicemembers when in need.
Bereavement leave is one additional backstop to ensure that no member could be denied a period of paid time off from work following the death of a child or spouse. Because of this, bereavement leave was made non-chargeable if affected servicemembers had fewer than 30 days of leave so that none could be denied such leave on the grounds that they had already used their accumulated paid leave. The conferees expect that servicemembers who experience the loss of a close family member are afforded as much time off as possible, including via bereavement leave or emergency leave; alternate duties as required; and other accommodations as situationally appropriate.
Because of you, we had wonderful and supportive calls with both Democratic and Republican legislators, and as a result, Congress issued this thoughtful response.
Thank you for making a difference!
Together, we are making the world a more livable place for bereaved people.
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 13, 2023 | Family, Grief, Parent
By Cynthia Prestidge
Grief teaches a mother lessons she never wanted to learn
My husband Brad came home to tell me what he had learned minutes earlier. Sarah is gone… Our Sarah-Grace. Our beautiful 24-year-old daughter. Dead. With three words and within mere seconds, I was shattered, gutted, disoriented. Any word that implies destruction, pain or confusion is relevant to that moment, but none alone, or combined, capture the devastation and confusion I felt after hearing those words.
Two years later, I’m trying not to evaluate a string of heavy days where my grief is so raw it feels frighteningly new. I remind myself that grief has nothing to do with functioning well or poorly, and the characteristics of it on any given day don’t mean much. Instead, I’ve learned that grief is my constant companion with a rhythm and intensity that’s unpredictable and often overwhelming.
Processing death, understanding grief
After Sarah died, I’d catch myself thinking that I’ll be relieved of this suffering because I’m trying so hard and I’m doing my best. The process of understanding that Sarah is dead, however, has been an agonizing and bizarre evolution.
First, there were the feelings of anticipation. Most days during the first year of grief, I’d tell myself, I can’t survive this. Then, Yes, I can. Just hold on. This will go away. When Sarah comes home. For a second, relief soothed my broken heart until truth slapped me in the face. No! That’s not true. These battles with reality went on for months. I don’t know what made them stop, but one day I simply noticed they had ended. ‘I’ve been defeated,’ I thought. ‘Truth and reality have won. I know the truth about Sarah will never change.’
In more grateful moments, I marvel at the way my psyche works to gently integrate this truth into my consciousness. When the words, Sarah can’t be gone, pop into my head, I recognize that my grief is changing. But it’s slow and subtle, and grief is still wildly and strangely independent of my other emotions, making any day unpredictable.
And these days, I have two kinds of days, OK/fine or bad/terrible. Both are unsettling. On the bad days, I wonder, will I be this way forever? On the OK days, I wonder, does this mean I’m over the trauma of Sarah’s death? I know the answer to both of those questions, but I’m new in this process and I don’t know what the future will bring, so I have to ask.
What I’ve learned about grief
All that I’ve learned as a grieving mother is only vaguely describable and not very teachable.
I remember in the early days being told that my grief will change. After two years, I can say that’s true, but I can’t really explain what’s changed other than, it’s different. Or, how it still feels painful, but in a different way. Or, what occurs to make that happen other than an excruciating breakdown of life and self, followed by the arduous rebuilding of everything. And that’s not very helpful.
So, when I read that people feel their child, or that they carry their child’s heart in their heart, I wonder how that came to be? What am I doing wrong that I don’t have that? Is it even true or possible? What does that even mean?
But I know there’s nothing of what I will come to understand about grieving and surviving the death of my daughter that can be fast-tracked or transferred from one person to another. I know I’ll find answers because parental grief is the most persistent and demanding teacher I’ve ever encountered. The insights are so painfully acquired.
Charting a path toward survival
I can’t imagine ever breathing easily when I think of or say the words Brad came home to deliver. I don’t even write them with ease.
I’m not innately wired to cope with the death of my child. Instead, I must consciously try not to fight against my grief and be, as is often said, present with it. That’s the second hardest thing about Sarah’s death — the daily decision to accept my grief and keep going. But I made a commitment to do just that on the day Sarah died.
That commitment was made during a desperate phone call to Brad’s brother Blaine as the two of us drove to the mortuary. Blaine and his wife, Cheryl, buried their only child, Kyle, 18 years and 5 months before we would bury Sarah. Brad and I had gone to the mortuary with them. We were broken-hearted for their loss and grateful we weren’t in their shoes.
“How do we do this, Blaine?” I sobbed. “How do we even survive?”
“You really have two choices,” he said. “You can either let it completely destroy you or you can try to keep living.”
Somehow, I got through the worst weeks of my life. Later, when time demanded a routine, I was unprepared for what was required of me to heed Blaine’s counsel. The seeming ease and comfort of giving up, rather than trying, has always been alluring.
So, I remind myself of the promise I made when Sarah died: That through every dark, gut-wrenching, lonely day, I will keep trying. I will slog through hell. What I learned in the conversation with Blaine still grounds me. Surprisingly, it’s not that he pointed out that we have a choice. Rather, it was the chilling summation of his advice, spoken with heavy, palpable sorrow. After giving us our two options, he added, “and I don’t have to tell you what I chose.”
I cry thinking about the price that was paid, so he could impart that wisdom.
Resolving to do it again
When Sarah died, I expected my grief and faith to be companions, but grief is lonely. At the end of the day, I’m alone with thoughts, questions and fears that make me an inhospitable environment for the whispers of spirituality. Yet, I still hold on to my faith, knowing a power beyond my own helps me through the minutes and hours.
And each day, I resolve to do it again, though it’s never an easy decision.
Doubt and dread can strike without warning. It’s a constant fight through pain and confusion. But, I want to keep trying, for those I love and for those who love me. And, missing Sarah as I do, I hope and pray that someday, somehow, I too will know what it means to carry her heart in my heart or feel her with me.
Sarah’s death on Nov. 7, 2016 brought devastation, pain and confusion to my life with a power that could have destroyed me, Brad, our two sons and youngest daughter. Today, one of the most important truths that keeps me going is Sarah wouldn’t want that to be her legacy. She doesn’t deserve it either.
So, to honor Sarah and her indelible place within our family, for Brad and our wonderful, grieving children, I do the hardest work I’ll ever do, even when it feels impossible.
I choose to try. To keep living.