In the Victorian era, jewelry made with hair was all the rage. In 1854, the novelist Wilkie Collins wrote that bracelets made of human hair were “in England one of the commonest ornaments of woman’s wear.” Ten years later, Charles Dickens wrote that a man’s watch fob made of hair was the real mark of middle-class respectability.
Victorians on both sides of the Atlantic were particularly mesmerized by the hair of the dead. Victorian literature scholar Deborah Lutz explores “the materiality of death and its artifacts” of the era, finding antecedents in the Christian reliquary tradition, when body parts of saints were considered magical. Protestantism and secularization shifted this fascination toward the sought-after body parts of royals and the very famous (like Napoleon, whose penis is supposedly now in New Jersey). By the middle of the nineteenth century, this long Western tradition had become “increasingly secular, personal, and private.” And concentrated on hair.
Loved ones and relatives could give hair as tokens of love and friendship. Family members or lovers could twine their hair together. After a person’s death, their hair remained; as the Whitman exhibits show, well-preserved hair can last a long time. Hair was a tangible keepsake of a life, and of a body. Perhaps it imparted a sense that you might meet again.
Lutz writes that such relics “work as traces of a life and body completed and disappeared, in this sense something like last words, by they also serve as frames or fragments of the moment of loss.” These present reminders of those who have died speak of a “desire to see death as not permanent, in that material remains might be proof that the loved one still exists somewhere, somehow.” Relic worship also shows a willingness “to dwell in and with the moment of loss itself, to linger over this evidence of death’s presence woven into the texture of life at all turns.”
Romanticism, the Evangelical revival of the 1830s-40s, and Spiritualism’s rise in the 1850s-1860s, all contributed to this “after-death narrative” and the mid-century popularity of “hairwork.”
Lutz reminds us of the passage in Emily Brontë’s Wuthering Heights (1847) when Heathcliff switches his rival Linton’s hair from the locket around the dead Catherine’s neck and replaces it with his own. “Rather than gathering a memento of Catherine for himself, Heathcliff sees to it that a material fragment of his body will go down into the grave with Catherine’s corpse, to intermingle with her flesh.” The notion of the “good death” merges here with the palpable eroticization of death. Of course, Heathcliff’s plans are foiled by Nelly Dean, who twines Linton’s lock around Heathcliff’s—opening “the possibility of a postmortem storm of jealousy.”
Fiction mirrored the times. After her husband’s death in 1861, Queen Victoria had at least eight pieces of jewelry made that incorporated Prince Albert’s hair. The Victorians “found in relic culture a means to respect the irreducible self.” Such a culture, Lutz says, “sees death, and the body itself, as the beginning of stories, not their end.”
Tears spill down Nora McInerny’s face as she stares at the recording studio’s ceiling.
“That was when the doctors told her the cancer was going to kill her,” the interviewee is saying.
“Wow,” McInerny says, letting the word rest in the air. The pause stretches far beyond a comfortable one. McInerny has a pained look on her face, yet she appears every bit the polished modern woman: her blond hair is curled, her red lipstick is still in place and there is a scarf tied in a perfect knot around her neck. In another studio, she could be working on a show about the latest fashion trends or young women in the workplace.
Instead, she’s hosting a podcast about the horrors that face humanity: cancer, suicide, sexual abuse, mass shootings.
Each week, the podcast digs deep. It allows listeners to think about the pain we live through, how we face it, tackle it, collapse under its weight. It gives permission to grieve, to go on living, to be happy and sad simultaneously. It’s about everything that life can throw at us and the myriad ways in which we must reimagine our lives. As McInerny writes in her newest book, “No Happy Endings: A Memoir,” “death is not the only time we start over
And McInerny is an expert in the subject.
“Terrible, Thanks for Asking” and all that has come after was born out of McInerny’s own grief. She launched it in 2016, as a 33-year-old single mom, just two years after losing her first husband, Aaron Purmort, to brain cancer. Weeks before Aaron died, she also suffered a miscarriage and watched her father die.Aaron’s obituary, which they wrote together, went viral, and people began contacting McInerny. “So many people . . . were reaching out to me, a complete stranger, in the middle of the night to talk about the worst thing that ever happened to them, and it wasn’t because they were all friendless or familyless,” she remembers. “It was just because the people around them were afraid to talk to them or didn’t want to remind them of their tragedy.”
Episodes include guests such as a young man with cerebral palsy; a woman who almost died in a fire that killed her boyfriend; an emergency-room doctor who watched her husband die in the hospital where she works.
Each story is filled with almost-unspeakable pain. And yet, the podcast has been listened to more than 14 million times.
Sitting on her couch recently in Minneapolis, McInerny recalls those early days after losing Aaron. As she talks, she looks at a wall-size photograph of the two of them holding their young son, Aaron’s adoring gaze forever watching over the bustling living room, so full of life.
Just then, McInerny’s husband, Matthew Hart, walks in holding their youngest child, who they affectionately call “baby.” Her 6-year-old, the one who calls Aaron “Dad” and Matthew “Matty-daddy,” runs in dressed like a shark, and she laughs. Two teenagers, Matthew’s kids from his first marriage, coordinate pickup from soccer practice that afternoon. McInerny’s mother shows up and begins chatting with Matthew and playing with the younger kids. And, of course, there’s a family dog.
The chaos and love surrounding McInerny is a perfect representation of her life.
“I do think most families are complicated and built from all of these fragmented other places, but we’d rather not think of it that way,” she says. Her family, in fact, isn’t just her new husband and their kids. It also includes Aaron’s family, especially his mother, whom she communicates with often. McInerny admits in her new book that she and Aaron’s mom initially “couldn’t do the grief together,” but now her family of six spends part of every winter break visiting her. “Aaron’s mother buys all the kids Christmas presents,” she says, “and they all call her May-May.”
The life that surrounds her is full of many positive things. Yet when she cries about Aaron with people outside her inner circle, she says, it can be a bit disconcerting to them. She understands that society believes she should be either happy or sad, but not necessarily both. “I think that most families hold both sad and happy feelings, and I don’t think I would have known that or assumed that before. In fact, I know I wouldn’t have.”
When Aaron was dying, the couple formed a nonprofit organization, Still Kickin, that gives no-strings-attached grants to people who are struggling. One recipient, a domestic violence survivor named Andi, recalls how the grant helped her move and support her family “during a very dark time.” This grant was “a bright light to me amidst so much darkness.”
Even with such demands on her time, McInerny tries not to compromise her home life, going to the gym with her teenagers or snuggling on the couch with her little ones. Her work with grieving people lives alongside an otherwise normal life.
McInerny’s goal is not to sensationalize death and tragedy. “I know how it feels to just be somebody’s sad story. Nobody wants to be a sad story,” McInerny says. Instead, she aims to make a show that is about understanding the complex mix of joy and pain experienced by one person.
This means that if she’s doing a story, for example, about two law enforcement officers whose baby died of SIDS, she doesn’t spend weeks researching the various causes of infant death. Instead, she tries to understand an individual story. So McInerny lets the bereaved family talk with little interruption. The mother speaks through tears as she recalls seeing her husband the moment after tragedy hit. “All I could think of was hold it together,” she says, “because your husband just watched our son die.”
In these interviews, McInerny provides narration and a frame from which to view the story. In another episode, she interviews a Hmong woman named Yer Vu who was widowed, became a refugee and fled to the United States with three young children. “I carried [my youngest son] on my back,” the woman recalls as part of her harrowing tale of escape which also involved fording a river in a war zone. “If there was no God, maybe we would have died,” Yer Vu says.
There is a slight pause, and then the listener hears the voice of McInerny. “Yer Vu credits God,” she narrates, “and I credit Yer Vu. Because that is more motherhood than I have or will ever do in my entire life.”
Her authenticity has brought some unexpected voices to her podcast, such as Nation Hahn, who was drawn to the podcast because he felt she could tell his story in a way that other media had not. His episode, which focuses on how he processed the murder of his wife while being simultaneously thrust into a media spotlight, gave him a platform to tell his whole story. “I admire [McInerny] for her tenacity and willingness to explore tough issues while building community,” Hahn says. “As someone who is still very much experiencing grief years later, ‘Terrible, Thanks for Asking’ offers a path forward, helpful advice, and reminds me that I am not alone in the face of this terrible loss.”
McInerny says her goal is to promote empathy instead of pity. So even though the topics she covers can be quite grim, the show itself is not. She laughs often while talking to guests and usually gets them to laugh, too.
“I don’t want the show to be a relentless bummer,” she says. Still, she believes in the importance of facing difficult subjects head-on. “We do a really good job, especially the U.S., of making sure we avoid everything uncomfortable,” McInerny says. But running from pain is impossible, because “it will catch you eventually. So you might as well be open to the experience and open to witnessing those experiences in other people because someday something terrible is going to happen to you or to someone you love. Actually, that’s a guarantee.”
But why continue to immerse herself in tragedy when she’s already been through so much loss?
“Sometimes, I don’t want to do it,” McInerny concedes, but then there are times when she feels inspired by the stories she hears. Moreover, she wants these conversations about death and loss and hardship to become more commonplace. Notes from listeners explain how she may have an even wider impact than she initially imagined.
“I think you saved my life tonight,” wrote a man named Jim who told her he had been struggling with depression. “You kept me awake tonight, and now I know tomorrow will be better.”
McInerny recognizes that letting in all of this pain is difficult for most people. In fact, she found it really hard to engage in such discussions before she had to face her husband’s cancer and death. She knows that it might be impossible for her to ever really understand what grief feels like for someone who has experienced a different tragedy. “But at the same time,” she says, “very untimely and tragic death does give you some sort of access to each other.”
Maybe this is what makes her so effective at getting people to open up about their lives. Or maybe it’s just that McInerny has that certain touch — the one that helps people tell the entirety of their stories, rather than be reduced to a simple anecdote.
The topics she tackles may be difficult, but, she says, “These are things that everybody has always been trying to connect over since the dawn of time, right? The few things that we all have in common are love and want and death.”
Dayna West knows how to throw a fabulous memorial shindig. She hired Los Angeles celebration-of-life planner Alison Bossert — yes, those now exist — to create what West dubbed “Memorialpalooza” for her father, Howard, in 2016 a few months after his death.
“None of us is going to get out of this alive,” says Bossert, who helms Final Bow Productions. “We can’t control how or when we die, but we can say how we want to be remembered.”
And how Howard was remembered! There was a crowd of more than 300 on the Sony Pictures Studios. A hot-dog cart from the famed L.A. stand Pink’s. Gift bags, the hit being a baseball cap inscribed with “Life’s not fair, get over it” (a beloved Howardism). A constellation of speakers, with Jerry Seinfeld as the closer (Howard was his personal manager). And babka (a tribute to a favorite “Seinfeld” episode).
“My dad never followed rules,” says West, 56, a Bay Area clinical psychologist. So why would his memorial service
Death is a given, but not the time-honored rituals. An increasingly secular, nomadic and casual America is shredding the rules about how to commemorate death, and it’s not just among the wealthy and famous. Somber, embalmed-body funerals, with their $9,000 industry average price tag, are, for many families, a relic. Instead, end-of-life ceremonies are being personalized: golf-course cocktail send-offs, backyard potluck memorials, more Sinatra and Clapton, less “Ave Maria,” more Hawaiian shirts, fewer dark suits. Families want to put the “fun” in funerals
The movement will only accelerate as the nation approaches a historic spike in deaths. Baby boomers, despite strenuous efforts to stall the aging process, are not getting any younger. In 2030, people over 65 will outnumber children, and by 2037, 3.6 million people are projected to die in the United States, according to the Census Bureau, 1 million more than in 2015, which is projected to outpace the growth of the overall population
Just as nuptials have been transformed — who held destination weddings in the ’90s? — and gender-reveal celebrations have become theatrical productions, the death industry has experienced seismic changes over the past couple of decades. Practices began to shift during the AIDS epidemic of the 1980s, when many funeral homes were unable to meet the needs of so many young men dying, and friends often hosted events that resembled parties.
Now, many families are replacing funerals (where the body is present) with memorial services (where the body is not). Religious burial requirements are less a consideration in a country where only 36 percent of Americans say they regularly attend religious services, nearly a third never or rarely attend, and almost a quarter identify as agnostic or atheist, according to the Pew Research Center.
Funeral homes adapt
More than half of all American deaths lead to cremations, compared to 28 percent in 2002, due to expense (they can cost a third the price of a burial), the environment, and family members living far apart with less ability to visit cemetery plots, according to the National Funeral Directors Association. By 2035, the cremation rate is projected to be a staggering 80 percent, the association says. And cremation frees loved ones to stage a memorial anywhere, at any time, and to store or scatter ashes as they please. (Maintenance of cemeteries, if families stop using them, may become a preservation and financial problem
Past funeral association president Mark Musgrove, who runs a network of funeral homes and chapels in Eugene, Ore., says his industry, already marked by consolidation, is adapting to changing demands.
“Services are more life-centered, around the person’s personality, likes and dislikes. They’re unique and not standardized,” he says. “The only way we can survive is to provide the services that families find meaningful.”
Funeral homes have hired event planners, remodeled drab parlors to include dance floors and lounge areas, acquired liquor licenses to replace the traditional vat of industrial-strength coffee. In Oregon, where cremation rates are near 80 percent, Musgrove has organized memorial celebrations at golf courses and Autzen Stadium, home of the Ducks. He sells urns that resemble giant golf balls and styles adorned with the University of Oregon logo. In a cemetery, his firm installed a “Peace Columbarium,” a retrofitted 1970s VW van, brightly painted with “Peace” and “Love,” to house urns.
Change has sparked nascent death-related industries in a culture long besotted with youth. There are death doulas (caring for the terminally ill), death cafes (to discuss life’s last chapter over cake and tea), death celebrants (officiants who lead end-of-life events), living funerals (attended by the honored while still breathing), and end-of-life workshops (for the healthy who think ahead). The Internet allows lives to continue indefinitely in memorial Facebook pages, tribute vlogs on YouTube and instamemorials on Instagram.
Memorials are no longer strictly local events. As with weddings and birthdays, families are choosing favorite vacation idylls as final resting spots. Captain Ken Middleton’s Hawaii Ash Scatterings performs 600 cremains dispersals a year for as many as 80 passengers on cruises that may feature a ukulele player, a conch-shell blower and releases of white doves or monarch butterflies.
“It makes it a celebration of life and not such a morbid affair,” says Middleton. His service is experiencing annual growth of 15 to 20 percent.
From coffins to compost
With increased concern for the environment, people are opting for green funerals, where the body is placed in a biodegradable coffin or shroud.
The industry is literally thinking outside the box.
“My work is letting people connect with the natural cycle as they die,” says Katrina Spade of Recompose in Seattle, who considers herself part of the “alternative death-care movement.” If its legislature grants approval this month, Washington will become the first state in the nation to approve legalized human composting. Her company plans to use wood chips, alfalfa and straw to turn bodies into a cubic yard of top soil in 30 days. That soil could be used to fertilize a garden, or a grove of trees, the body literally returned to the earth.
Spade questions why death should be a one-event moment, rather than an opportunity to create an enduring tradition, a deathday, to honor the deceased: “I want to force my family to choose a ritual that they do every year.”
Death has inspired Etsy-like enterprises that transform a loved one’s ashes into vinyl, “diamonds,” jewelry and tattoos. Ashes to ashes, dust to art.
After Seattle artist Briar Bates died in 2017 at age 42, four dozen friends performed her joyous water ballet in a public wading pool, “a fantastic incarnation of Briar’s spirit,” says friend Carey Christie. “Anything other than denial that you’re going to die is a healthy step in our culture.”
Funeral consultant Elizabeth Meyer wrote the memoir “Good Mourning” and named her website Funeral Guru Liz. Her motto: “Bringing Death to Life.” She notes, “Most people do not plan. What’s changing is more people are talking about it, and the openness of the conversation. Our world will be a better place when people let their wishes be known.”
In 2012, Amy Pickard’s mother “died out of the blue.” She was unprepared but also transformed. Now, she’s “the death girl,” an advocate for the “death-positive movement,” sporting a “Life is a near-death experience” T-shirt, teaching people how to plan by hosting monthly Good to Go parties in Los Angeles and offering a $60 “Departure File,” 50 pages to address almost every need.
“We’re still in the really early days of super-creative funerals. There’s this censorship of death and grief,” Pickard says. “You have the rest of your life to be sad over the person who died. The hope is to celebrate their time on Earth and who they were.” Overshadowing grief?
Some practitioners worry that death has taken a holiday, and grief is too frequently banished in end-of-life celebrations that seem like birthday blowouts.
“Do you think we’re getting too happy with this?” asks Amy Cunningham, director of the Inspired Funeral in Brooklyn. “You can’t pay tribute to someone who has died without acknowledging the death and sadness around it. You still have to dip into reality and not ignore the fact that they’re absent now
But even sadness is being treated differently. In some services, instead of offering hollow platitudes that barely relate to the deceased, “we are getting a new radical honesty where people are openly talking about alcoholism, drug use and the tough times the person experienced,” Cunningham says. Suicide, long hidden, appears more in obituaries; opioid addiction, especially, is addressed in services.
West, who hosted such a memorable send-off for her father, has some plans for her own: “Great food and live music, preferably Latin-inspired,” and “my personal possessions are auctioned off,” the proceeds benefiting a children’s charity. Why can’t a memorial serve as a fundraiser?
An avid traveler, West plans to designate friends to disperse her cremains in multiple locations “that have significance in my life” and leave funds to subsidize those trips — a global, destination ash-scattering.
It’s not surprising that someone whose whole life revolves around words would turn to literature in a time of tragedy to make sense of her suffering. The paradox is that the person most likely to seek solace from words is also the most likely to realize their insufficiency.
One such person is the unnamed narrator of “Where Reasons End,” Yiyun Li’s new novel. The 44-year-old narrator is a writer of stories and a grieving mother. For reasons that are never explained, her 16-year-old son, whom she calls Nikolai, “a name he had given himself,” killed himself only a few months earlier — a painful parallel to real life, as Li’s own 16-year-old son committed suicide in 2017
The novel is a series of imagined conversations between mother and son. From the start, we learn that the mother is agonizingly self-aware, both of herself and of the possible futility of these conversations.
That and the parallel to Li’s life are what make the experience of reading this work so powerful: the knowledge that the narrator needs the comfort of words yet senses their limitations. “I was a generic parent grieving a generic child lost to an inexplicable tragedy,” she says in the opening chapter. She seeks specificity, the need to “meet in a world unspecified in time and space … a world made up by words, and words only.”
One of the most arresting aspects of this novel is the way in which Li subverts expectations. One might expect Nikolai to be a sweet boy offering relentless comfort to his grieving mother. He’s a charmer, all right, a precocious son who painted whimsical landscapes, played the oboe and liked classical music and showtunes. And he was a bad speller who labeled a folder of songs “Edith Pilaf.”
But he has a sardonic edge that keeps him from seeming too precious. When his writer mother tells him that so many people miss him, Nikolai says she’s succumbing to the lure of clichés and admonishes her with, “You promised that you would understand.” When he accuses her of wanting him to feel sad for himself, he adds, chillingly, “I’m not as sad as you think. Not anymore.”
The dialogues in “Where Reasons End” cover a wide range of topics. Mother and son discuss love and memory and whether those capacities really do keep people alive forever. They discuss the capriciousness of time. Nikolai chides her for her dislike of adjectives, which she defends by saying that nouns, not adjectives, preserve memories. Besides, “I oppose anything judgmental,” she says, “and adjectives are opinionated words.”
Much of this book is devoted to words, which is not surprising given that its narrator lives by them: “Words said to me. Words not meant for me but picked up by me in any case. Words in their written form. Words that make sense and words that make nonsense.” When one is in search of helpful words, poets are a good place to start, as their facility often crystallizes hard-to-express truths. Indeed, the narrator references many poets, including Marianne Moore, Elizabeth Bishop — the novel’s title comes from Bishop’s poem “Argument” — and Wallace Stevens.
Even poets, however, provide limited comfort, and the mother depicted here knows it. This realization compounds her grief as much as it ameliorates. “Words provided to me — loss, grief, sorrow, bereavement, trauma — never seemed to be able to speak precisely of what was plaguing me,” she says. “One can and must live with loss and grief and sorrow and bereavement.”
Later, she adds, “We feel at a loss for words when they can’t do fully what we want them to.” To which Nikolai offers as wise a defense of words as one is likely to find. “They never can,” he says, but, “Why not make do with the percentage they can achieve?”
The book gets repetitive after a while — much is made of the Latin derivations of words, and some of Nikolai’s dialogue is too stilted even for a sophisticated teen — yet its message is nonetheless a sobering one. Nothing can ever fill the hollows formed by tragedy, yet the desire to fill them is every bit as keen as the loss. If even a fraction of the emptiness is replaced, then the quest is worth the effort.
Late in the novel, the narrator quotes Stevens’s poem “This Solitude of Cataracts”: “He wanted the river to go on flowing the same way, To keep on flowing.” Anyone who has ever lost a loved one — that would be all of us — will relate. If only they were still here to keep the river of our lives flowing as it once had.
“Everyone knows loss in one way or another. This song is about that,” Marcus Mumford says of Delta track
A young boy watches over his dying mother and fantasizes about better times with her in the video for Mumford and Sons’ new Delta single “Beloved.” The son and mother, who’s still wearing a hospital gown, run around, go shoplifting and ride horses on a beach. “Before you leave, you must know you are beloved,” Marcus Mumford sings against a serene backdrop of synths and guitars, “and before you leave, remember I was with you.” It all builds to an emotional finale.
“Everyone knows loss in one way or another,” Marcus Mumford said in a statement. “This song is about that. I’d never sat with anyone as they died before, and it had an effect on me. As it does everyone I know who has experienced it. But there’s wildness and beauty in it as well, and a deep honoring, that became the beginnings of this song that we worked up called ‘Beloved.’ I feel determined for people to take whatever they want from it, and not to be emotionally prescriptive.”
It’s hard to know what to do or say when someone you know loses a person who was close to them. Grief is a scary and amorphous thing, and if you haven’t experienced it, reaching out can feel like overstepping a boundary or reminding someone of something they’re trying to forget.
But grief is as isolating as it is painful, and it is important to let bereaved friends and acquaintances know you are thinking of them and their loved one, no matter how awkward it feels. This is true if you knew the person they’ve lost; this is also true if you didn’t.
“Most grieving people, whether they’re aware of it or not, one of their biggest fears is that the person who has been lost will be forgotten,” Jennifer Soos, a licensed marriage and family therapist in San Antonio, Texas, says. “Anytime someone remembers them, acknowledges them, speaks about them, conjures them in any way, it’s like a balm to that fear.”
So, though it might seem like ignoring a loss makes it easier for the person in mourning to move on, it’s actually the worst thing you can do. And though it may seem trite to tell someone, “I’m sorry for your loss,” at the very least, acknowledging both that the lost person existed and that now they do not will make your grieving friend feel heard and validated. “I don’t think it can happen too often,” Soos says.
Here’s how to do it.
Send a card—or any kind of message
Or an email, or a text message, depending on what generation the person in mourning belongs to, and how well you know them. “If you are a millennial and it’s a peer, a text message is fine,” Soos says. “An email is better than a text message, because you had to actually sit at a computer to do it. I’m firmly and squarely in Generation X, so I prefer a handwritten note, but I recognize that is a generational preference.”
Basically, doing something is better than doing nothing, but everyone likes a card. (It’s also noteworthy that a text can get lost in the post-death deluge, which is something to keep in mind.)
It’s okay not to know what to say (but here are a few things you might want to)
No one really knows what to say to someone in mourning, particularly if the death of their loved one was unexpected. It’s perfectly fine to admit that in your letter. “The ‘right’ thing to say, in my opinion, is just the truth,” Soos says. “That is what we hear over and over and over again from bereaved people in therapy and support groups and in research. What they say is, ‘I wish people would just say, ‘I don’t know what to say but I’m sorry.’ ‘I don’t know what to say but I’m sad for you.’ ‘I don’t know what to say, but I care for you.’”
You want to let the person know that you’re thinking of them, and you’re there for them, and you’re available to listen. You are not expected to make them feel better, because when you are grieving, nothing will make you feel better. But you do not want to feel ignored or alone. “It seems very vulnerable to say, ‘I don’t know what to say,’” Soos says. “We worry it will be awkward or offensive or upsetting to a person. But the truthful thing is, we don’t know what to say. There are no words that are going to make it better, unless you have a magical spell to bring the dead back to life.”
So, feel free to stick to platitudes, as long as they’re truthful. “One of the things people can say is, ‘I don’t know what to say, but I love you and I’m here for you,’” Dr. Marilyn Mendoza, a psychologist in New Orleans, says. “Or, ‘I’m thinking about you and sending you love.’ Or, ‘No words can describe how sorry I am for your loss. My heart goes out to you.’”
As Soos puts it, “What you are really trying to communicate is, ‘I am here for you. I witness what you are going through, I acknowledge it, I’m not ignoring it, I do not need to have perfect words to help you. You are seen and you’re heard and I’m sharing in the burden of this pain with you just simply by acknowledging it.”
Don’t talk about yourself
This should be obvious, but a condolence note is not the time to broadcast your own life updates. “The note should be for the bereaved,” Mendoza says. “Don’t include stuff about yourself, like I just got a new job or here’s my new address.” Similarly…
Don’t say, ‘I know how you feel’
It’s tempting to empathize with someone in mourning, especially if you’ve experienced loss yourself. But grief manifests differently for everyone, and it can be invalidating to have someone claim to know your specific feelings when they do not. “Don’t say, ‘I know how you feel,’ because even if you’ve lost your mother, you don’t really know how that other person feels. You know how you felt about it,” Mendoza says.
It’s also not helpful to offer advice. “Nobody really wants advice,” Soos says. “It makes some subtle judgment that there’s a right or wrong way to grieve.”
And if you were thinking of using the words “at least” at any point, don’t. “I always tell people, if you’re going to say the words ‘at least,’ you should stop,” Soos says. “You’re about to justify why it shouldn’t be painful, which is invalidating.”
Don’t presume to know the relationship between the person in mourning and the person they lost
It’s common to include a message in a condolence card commenting on how special the deceased was to the bereaved. But if you didn’t know the person who died or much about their relationship with the person you’re writing to, you might want to avoid making any assumptions.
“If you don’t know the person, commenting about them might not be the best thing,” Mendoza says. “Sometimes it’s not a very special relationship.” Of course, if you did know for a fact that this person was very close to your friend, feel free to say so. You also might want to include the deceased’s name. “When you’re the bereaved, people often won’t use the person’s name, but it means a lot to them,” Mendoza says. “So you can say something like, ‘I know David was a special person for you.’”
Offer concrete help, if any
A thing people often say in times of strife is, “Let me know if there’s anything I can do.” It’s not that this is necessarily a bad thing to say, but someone in mourning isn’t going to do the work to take you up on it. Instead of offering vague assistance, “Offer them something specific, and let them tell you whether it will be helpful or not,” Soos says. Ask them if you can bring them dinner, or feed their cat, or babysit their kids, or take them for a drink and lend an ear.
And if you know them well enough (and know that it wouldn’t be an intrusion), feel free to do something without being asked. “I have a really good friend and one of her closest friends died recently,” Soos said. “I didn’t ask, I just showed up at her house and brought dinner.”
Reach out a second time after the immediate mourning period has ended
Most people reach out to the bereaved right upon hearing the news, which is certainly the right thing to do. But immediately after someone dies, everything feels like a blur, and while it’s very nice to be flooded with texts and emails and lovely cards, it’s hard to appreciate the heartfelt messages in the moment. Soos recommends reaching out to those in grieving a second time, after the initial mourning period has ostensibly ended.
“The truth of the matter is that people in those first days or weeks [after a death], they don’t really remember much, quite frankly,” Soos says. “When you hear the news, do an initial reach out, but then immediately mark on your calendar, 4-16 weeks out. That’s the time that most people need more support and encouragement.”
Soos says that after a few months, most people who weren’t close to the deceased move on, but for those who are grieving, the pain hasn’t subsided. “The horrible thing about timing and grief is that the period where the shock starts wearing off coincides with the time everyone else is moving on. And that’s when you’re really settling into, ‘Oh my goodness, this is my real life and this sucks,’” Soos says. “Those messages and notes and texts that come at the 3-month, 4-month mark and on can be more meaningful than the initial reach out.”
So, after a few months, send a text, take your friend to dinner, go to their house with a bottle of wine and a good movie, and let them tell you about the person they loved. Don’t feel like you’re forcing someone to rehash unpleasantness, or reminding them of something they want to forget. What they really want, is not to be forgotten.
Being part of the disability community means constantly losing friends and allies. I don’t expect that to change.
By Robyn Powell
“Kristen has passed away.” I’ll never forget learning that my best friend died. I was only 11 years old. We lived in the same town and attended school together. She had spina bifida as well as problems with her kidneys. After years of dialysis, it was kidney failure that ultimately killed Kristen.
Now, at 37, I have lost count of the number of loved ones who have died. I do know that it is well over 20. Friends have died. Colleagues have died. Romantic partners have died. Even my first love died a few years ago. Each year I lose at least a few people I care about, and I don’t expect that to change. The deaths of people close to me are something I have come to accept.
Just last month, my friend Carrie Ann Lucas died after her health insurer refused to cover the medication she needed. Yes, she had a progressive disability but its symptoms were exacerbated because she did not receive adequate health care.
Other pioneers in the disability community, whom I looked up to, also died recently. Dr. Anita Silvers, a professor of philosophy at San Francisco State, died after complications from pneumonia. Professor Mike Oliver from the University of Greenwich in England died after a short illness. Oliver is known for developing the social model of disability.
I was born with arthrogryposis, a disability that affects my muscles and joints. I use a power wheelchair and have limited use of my arms and legs. Being disabled is normal for me. Indeed, it is all I know. It is also something I am incredibly proud of.
But each time a disabled friend dies I find myself questioning many things in my life. And one recurring question is this: How I can I maintain my disability pride when I am always surrounded by death? It is not always easy. In fact, at times it can feel insurmountable. While some of my friends have died because of their disabilities, others have died because of broken systems that devalue the lives of disabled people.
Some disabilities are associated with shorter life expectancies, but many are not. And, because of advances in technology and treatment, people with disabilities once considered terminal are living longer. Stephen Hawking, who lived for decades with A.L.S. proved that. Nevertheless, being part of the disability community means being surrounded not just by the life and support, but by death.
Research shows that people with disabilities die younger than nondisabled peers. Sometimes our life spans are shortened because of our disabilities, but that is not always the case. In one study, researchers found that disabled people are more likely than nondisabled people to die from heart disease, cancer, stroke, respiratory disease, accidents suicides and assaults. And while physical and circumstantial factors are at play, it is often the way we are treated that contributes to early death.
I have been around disabled people my entire life. The disability community is where I feel the most comfortable to be myself. They understand my experiences — both good and bad — and offer great insights without trying to fix me or my disability. They don’t see our disabilities as tragedies or something to be ashamed of. They appreciate how much it sucks when an airline breaks my wheelchair or a personal care assistant doesn’t show up, but they also recognize how important disability pride is.
Being a part of the disability community has made me who I am — and I don’t just mean in the physical sense. I have had beautiful and rich experiences, not in spite of, but because I am disabled. I have met truly amazing people whom I would never know if I weren’t disabled. Having a disability has also informed my life’s work. First as a social worker and now as an attorney and researcher, I have committed myself to fight for disability rights. My disability and the experiences I have had make me better at my work. I likely wouldn’t be in this field if I weren’t disabled, but I am thankful that I get to do this work.
Not everyone understands disability pride, which is apparent when a disabled person dies and nondisabled people nearly always repeat the same ableist remarks: “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” I can’t say hearing these things doesn’t get to me; it does. These comments diminish the lives both of the dead and the living. Most of us are fine not running; we are not suffering, and we do not want to be cured.
During difficult times, I sometimes find myself wondering why I allow myself to continue to be surrounded by death. Having disabled friends means frequent loss. Death and disability are uncomfortable bedfellows. But to avoid this constant grieving would mean to rid myself of a community that I love.
In some ways, I believe that being surrounded by death has allowed me to live a more fulfilling life. I try to cherish my time with loved ones, intensely aware that it could be the last time I see them. I also strive to live in the moment, appreciating the little things in life. Because I have experienced so much loss, I know the importance of celebrating the good times.
Death is unavoidable. But as a disabled person, I am all too aware that death and disability are inextricably linked. Because of my disability, I have an enriched life. I have also experienced tremendous heartbreak. In the end, I have come to understand that I will love, and I will grieve. There’s something almost freeing about accepting that harsh reality.