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.
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.”
May 12, 2023 | Advocacy, Appropriations, Federal Government, Grief
Open for comment until 11:59 p.m. Eastern Time on Friday June 2, 2023
One of the most hotly debated topics in bereavement care is whether all grief is normative or a diagnosable condition. For the first time, the federal government is beginning to examine scientific evidence on when grief is normative and when, if ever, does it limit daily life and function.
As part of the FY23 U.S. budget process, Congress passed a $1 million appropriation directing the Agency for Healthcare Research and Quality, a federal health agency, to conduct an evidence-based review of grief and bereavement literature to determine the feasibility of developing consensus-based standards for high-quality bereavement and grief care. AHRQ is accepting comments from the public on this issue until 11:59 p.m. Eastern Time, Friday, June 2, 2023. To learn more, visit AHRQ’s website and follow the directions on how to submit a comment.
Further, a technical panel of experts will be convened to help guide and inform federal efforts. Evermore has the distinct opportunity to nominate experts for the technical panel. If you are interested in being nominated, submit a nomination here (the nomination period has now closed). Nominations will be accepted until 12:00 p.m. Eastern Time, Friday, May 19, 2023. Submitting a nomination application does not ensure that Evermore will advance your application to federal leaders. In addition, if accepted, Evermore will not cover expenses related to your service as part of this effort.
As concurrent mortality epidemics touch every neighborhood in America, now, more than ever, our nation must invest in grief and bereavement leaders, programs, and science. This effort will advance our nation toward Evermore’s vision of a world where all bereaved people experience a healthy, prosperous, and equitable future. We are more committed than ever to serving bereaved children and families and the tireless frontline providers who have been on the frontier for decades.
Apr 12, 2023 | Community, Family, Grief
Across America, powerful imagery and musical cadence ring out in coffee shops and onto the page during National Poetry Month. Launched by the Academy of American Poets in April 1996, the month-long recognition celebrates the poets’ integral role in our culture and society. We are reminded that poetry matters.
Evermore’s very own Jena Kirkpatrick (editor of this newsletter!) has been a poet for over three decades, and when her son, Ellis, died, she was gifted What Have You Lost?, an anthology of more than a hundred poems selected by acclaimed poet Naomi Shihab Nye. Nye called on poets to help answer this question, and for Kirkpatrick, these collected works helped her cope with her pain.
So, to honor our losses and the great poets who help us find words to describe the indescribable, Kirkpatrick spoke with some of the nation’s most distinguished poets — Naomi Shihab Nye, Rosemerry Wahtola Trommer, Beth Wood, Brady Peterson, Regie Gibson, and Nathan Brown to share their thoughts on grief, how it affects their writing, and how poetry can help grieving and bereaved people.
Each of these poets, acclaimed in their own right, generously shared their personal insights following their own losses, their poetry, and the navigation of delicately placed words we choose to honor our beloved.
About Naomi Shihab Nye
Naomi Shihab Nye describes herself as a “wandering poet.” She has spent more than 40 years traveling the country and the world to lead writing workshops and inspire students of all ages. Born to a Palestinian father and an American mother, she grew up in St. Louis, Jerusalem, and San Antonio. Her awards and honors are numerous — among them are the Lavan Award from the Academy of American Poets, four Pushcart Prizes, the Robert Creeley Prize, and “The Betty Prize” from Poets House. In 2019-2020 she was the editor of the New York Times Magazine poems. She was named the 2019-2021 Young People’s Poet Laureate by the Poetry Foundation and, in 2020, awarded the Ivan Sandrof Award for Lifetime Achievement by the National Book Critics Circle. Nye is a Professor of Creative Writing – Poetry at Texas State University. Nye is the author of dozens of poetry books that can be found here.
About Regie Gibson
Regie Gibson is a literary performer, songwriter, author, workshop facilitator, and educator. Regie and his work appears in the New Line Cinema film love jones, based largely on events in his life. He is a former National Poetry Slam Individual Champion, and was selected as one of Chicago Tribune’s Artist of the Year for Excellence for his poetry. He has co-judged the Chicago Sun-Times Poetry Competition, has been regularly featured on NPR and has appeared on HBO’s Def Poetry Jam. He is the author of Storms Beneath the Skin.
About Rosemerry Wahtola Trommer
Rosemerry lives with her husband and daughter in Placerville, Colorado, on the banks of the wild and undammed San Miguel River. Devoted to helping others explore their creative potential, Rosemerry is the co-host of Emerging Form, a podcast on the creative process. She also directed the Telluride Writers Guild for ten years. She has 12 collections of poetry, and her work has appeared in O Magazine, A Prairie Home Companion, PBS NewsHour, American Life in Poetry, on fences, in back alleys, on Carnegie Hall Stage, and on hundreds of river rocks she leaves around town. Beneath All Appearances is a new, collective work of collages and poems by bereaved mothers Rashani Réa, Damascena Tanis, and Trommer; it has been called “a pole star for those who grieve.” This month, Samara Press will release her next collection, All the Honey. She’s won the Fischer Prize, Rattle’s Ekphrastic Challenge (thrice), the Dwell Press Solstice Prize, the Writer’s Studio Literary Contest (twice), and The Blackberry Peach Prize.
About Brady Peterson
Brady Peterson lives near Belton, Texas, where he worked building houses for much of the past thirty years or teaching rhetoric and literature at a local university. He once worked a forklift in a lumber yard in east Austin, tried to teach eighth graders the importance of using language, worked briefly as a technical writer, and helped raise five daughters. He has run one marathon, fought in one karate tournament, climbed one mountain, failed to make the UT baseball team as a walk-on, and took tango lessons with his wife. He is the author of Dust, Between Stations, From an Upstairs Window, García Lorca is Somewhere in Produce and At the Edge of Town.
About Beth Wood
Beth Wood is a modern-day troubadour, poet, and believer in the power of word and song. Beth has been writing, performing, and creating for twenty-five years. In addition to releasing fifteen albums, Beth has released three books of poetry, Kazoo Symphonies, Ladder to the Light (2019 finalist for the Oregon Book Award Stafford/Hall award for poetry and 2019 Winner of the Oregon Book Award Readers’ Choice Award) and Believe the Bird (Winner of the San Francisco Book Festival Poetry Award). She has been recognized by the prestigious Kerrville New Folk Award, The Sisters Folk Festival Dave Carter Memorial Songwriting Award, the Billboard World Song Contest, The Oregon Book Awards, and many more. Beth lives in Sisters, Oregon, with her rescue dog Hannah and is continuously writing and rewriting her artist’s manifesto.
About Nathan Brown
Nathan Brown is an author, songwriter, and award-winning poet living in Wimberley, Texas. He holds a Ph.D. in English and Journalism from the University of Oklahoma, where he’s taught for over 20 years. He served as Poet Laureate for the State of Oklahoma in 2013/14 and now travels full-time performing readings, concerts, workshops and speaking on creativity, poetry, and songwriting. Nathan has published over 20 books. Most recent are his new collection of poems, In the Days of Our Seclusion, the first in a series, now known as the Pandemic Poems Project, that deals with the year of the pandemic, and a new travel memoir Just Another Honeymoon in France: A Vagabond at Large. Karma Crisis: New and Selected Poems, was a finalist for the Paterson Poetry Prize and the Oklahoma Book Award. His earlier book, Two Tables Over, won the 2009 Oklahoma Book Award. Brown’s poem “Nevertheless, It Moves” comes from his book To Sing Hallucinated: First Thoughts on Last Words.
Apr 12, 2023 | Community, Family, Grief
Dear Friends unknown,
We are joined together by so many things in grief. Maybe there’s a luminous cord connecting us through sleepless hours and hardest times. The poet Jack Ridl told me years ago, after my father died, “Grief is an ambush. When you’re least expecting it, it rises up again…”
Poetry is a close focus on something cared about. Whether you are writing or reading a poem, the poem (if you like and relate to it) brings you into an intimate space of details and affections – linkages and leaps. It’s a point of gravity again, stirring the heart.
Loss can feel numbing – a blur of overwhelm and sorrow, profound regret and insatiable yearnings. After our son died suddenly, I found myself wishing I could just turn my mind OFF. I felt an entire loss of meaning and gravity. I couldn’t write anything but tiny thank you notes for food and flowers for more than two months.
A child is the central engine of a parent’s heart. No matter what age they are, or what the circumstances, the child is the connecting thread to time – past and hoped-for future and always, always, present. What are they doing right now? How are they? Where are they? After his death, I missed the easiness of days, every random memory, and all our humor. All the plans. Everything reminded me of him. When scraps of humor started kicking back in again, it was like an old rusty propeller trying to spin.
Reading poetry gave my mind something to settle down inside, in even the worst times – a place to land. I had read Edward Hirsch’s profoundly moving Gabriel years before and went back to it. I read the astonishing Elegy by Mary Jo Bang, which won the National Book Critic’s Circle Award.
I was not terribly attracted to grief and healing books. They have good intentions, but. People will keep writing you, “There are no words” – but there ARE words. There have to be words! We live by words! No, no words will ever fully encompass how sad we are. But there are still words.
When finally, I felt able to write again in the third month, once again the tiniest things seemed most fortifying. This has always been my watchword in writing – stay tiny. No big ideas, only tiny ones please. Attempting to iron a stack of rumpled clothes and tablecloths one day, I heard the hissing of the steam iron and remembered he had once told me it was his favorite sound of childhood. So, the first little poem I wrote was called “Hiss.” It comforted me even to say the smallest thing in honor of him. One poem led to more. I also allowed some emails to provoke poems – here is one of those. I’m sending you some love out there.
About Naomi Shihab Nye
Naomi Shihab Nye describes herself as a “wandering poet.” She has spent more than 40 years traveling the country and the world to lead writing workshops and inspire students of all ages. Born to a Palestinian father and an American mother, she grew up in St. Louis, Jerusalem, and San Antonio. Her awards and honors are numerous — among them are the Lavan Award from the Academy of American Poets, four Pushcart Prizes, the Robert Creeley Prize, and “The Betty Prize” from Poets House. In 2019-2020 she was the editor of the New York Times Magazine poems. She was named the 2019-2021 Young People’s Poet Laureate by the Poetry Foundation and, in 2020, awarded the Ivan Sandrof Award for Lifetime Achievement by the National Book Critics Circle. Nye is a Professor of Creative Writing – Poetry at Texas State University. Nye is the author of dozens of poetry books that can be found here.
Resources
Naomi Shihab Nye website
Young People’s Poet Laureate by the Poetry Foundation
Ivan Sandrof Award for Lifetime Achievement by the National Book Critics Circle.
Find Nye’s books in Evermore’s bookshop here
