In November 2021, Viennia Lopes Booth went to visit her dad for the first time in a couple of months. When he opened the door, she was “shocked,” she shared during a death care conference in September. “I hadn’t seen him in two months, and he looked like a dead man walking.”
He told her that it was merely his sciatica flaring up and that it was “getting better,” but that was clearly not the case. After two days of Lopes Booth begging him to seek medical attention, he only relented when she gave him the option of calling an ambulance or family taking him to get care.
What followed is a story far too many people are familiar with. Lopes Booth’s father, Charles “Old Briar” Lopes, was Black and Wampanoag, had a “deep mistrust and fear of the medical institution,” she said. “With a lifetime of negative experiences, coupled with the long, ugly history of violence, disrespect, and utter disregard of Black and brown bodies, who could really blame him?”
Doctors confirmed her worst fears: end-stage prostate cancer. There were no remaining treatment options, and he was given two to 14 days to live. He ended up living 97 days and, thanks to Lopes Booth following through on his wishes, he spent them at home, with her as his caretaker.
“As he lay clinging to life,” she said, “he had an unusual request: He asked me to have a home wake.” Aside from his distrust of institutions, he “didn’t want to be alone in a strange building with strange people, living or non-living.” His own agency had always been important to him throughout his life, “and this was really no exception.”
Lopes Booth—who trained as an herbalist specializing in women’s health—recounted her experience at the Building Bridges in the Deathcare Landscape conference in Seattle. Appearing on a panel addressing Diversity, Equity, and Inclusion (DEI) in death care, she and other experts discussed how the industry often ignores specific cultural practices and death rituals; and may exert pressure on loved ones to forgo traditional practices because they are considered unhygienic (or even just unusual); and can often have a predatory effect on people’s finances during one of the hardest moments of their lives.
She shared her particular story to detail the institutional hurdles she ran into while caring for her father at home in his final weeks and creating the at-home memorial he asked for, but also to make clear that though these are both deviations from the norm, they are possible—and can (even should) become more common.
After he died, Lopes Booth’s family kept her dad’s body at home for a four-day vigil, celebrating his life. Throughout, they “kept a ceremonial fire going for the four days from his passing until we carried him away for cremation, and folks helped tend to the fire as a way to show love and honor my dad.” During the vigil, the door to his southeastern Massachusetts home was open: Friends, family, and even the hospice social worker visited whenever they wanted, some multiple times.” “We sang to him; read to him; played his favorite card game, Spades, in his room with him; played music for him; spent time in silence with him; shared food in honor of him. He was never alone,” she said.
“We honored him, his body, and his life and helped his spirit fully leave his body in a gentle way surrounded by family and friends in the home he loved,” she said. “He would be happy with his sendoff.”
When it came time to bury his remains, they honored him with “ritual and love in a sunrise ceremony,” laying “his shrouded body on the land he held a deep connection with near his beloved garden.” On the way to cremate him, Lopes Booth played a song in their native language that translates to, “Creator, help us. Help us to grieve, help us to heal, strengthen us.” A few days later, they held a small family funeral where they “laid him to rest in power on tribal land next to his brother and father,” marking his grave with a stone they found on his favorite beach.
“Our elders say that ceremonies are the way we remember to remember,” Lopes Booth said, quoting Braiding Sweetgrass author Robin Wall Kimmer, who is a member of the Potawatomi Nation. “Ceremony is a vehicle for belonging to a family, to a people, and to the land. Through this initiation, this last request, I was able to experience the power of ceremonial remembering at every turn. I felt the whisperings of my ancestors guiding this process.
“Having the space and time to be with us in this very intimate way helped me to feel deeply connected to another way, my ancestral way…reconnecting in this liminal space to all that has been taken from our family and my people,” she continued. “My kin were beaten, shamed, killed [and] conventional death care feels like another form of forced assimilation.”
Demonstrating that a different way was possible had profound effects on her family. After her father’s funeral, Lopes Booth said her in-laws “completely changed their death plan,” and her “cousin, who’s a tribal medicine man, asked me how he could do this for himself.”
She recalled seeing her nephews attending her dad’s services and realized how valuable it would be to have your first experience in a death situation be so respectful and culturally specific, while also normalizing a different method of post-death care.
“To know that that option exists is really important,” she said. She later elaborated: “When the gates were open, my family and our community were able to honor my dad in a way that was true to him, and that was true to us…that was a powerful experience.”
Lopes Booth describes the experience of “caring for my dad at the end of his life and after death” as “one of my greatest life achievements. In some ways, I think this was my dad’s last gift for me, to allow me to wrap him in some much love and to have this space to understand the fullness of his being.”
But getting to this beautiful, rewarding point “felt like I had climbed Mount Everest. But the thing is, I didn’t need to feel like I climbed Mount Everest.”
She detailed the “serious gatekeeping” she encountered “along every part of this journey.” What was hardest about the process was the “resistance from the people necessary to get them on board. The knee-jerk reaction from people was like, what? No, no, no.” (The easiest part? Taking care of her dad’s body, Lopes Booth said. “We used techni ice,” and it “worked beautifully over the four days.”)
“The town clerk was the first person I had to visit to figure out how to go about doing this. And it took me several visits to her”—plus mentioning her father’s status as a Vietnam veteran—before “she finally [softened] to the idea of being willing to help me,” Lopes Booth said.
“Funeral directors…resorted to scare tactics. One said this could turn into a really bad science experiment, and another said, I can’t really sell you a cremation container because what happens if your dad’s body rolls out of it”—which added “a little flare to the scare,” she said, a bit tongue-in-cheek. She had to prove to various professionals repeatedly that she was acting on her dad’s behalf—and could plan this unconventional death way so safely and responsibly. “Overwhelmingly, the consistent message was, this is not how we do things, and what you’re trying to do is literally impossible.”
“My father and our people have suffered extraordinary levels of institutional oppression. He wanted to be free of institutions in death. He wanted agency. He wanted family. And ritual is an art of remembering, to remember, and my journey with my dad and this family-led post-death care really awakened a ceremonial reconnection to my ancestors.”
Lopes Booth called on “folks in the death care industry to consider the ways in which” contemporary institutional gatekeeping operates akin to historic oppression, and “to realize that we are forcing people into death ways that lack personalized meaning and are driven by power, consumerism, and the status quo.”
She ended her speech with a hopeful challenge to conference attendees: “How can we be more conscious of that gatekeeper mentality, and how can we stop perpetuating it, to invite access, empowerment, and agency and to really build bridges to our people, to our land, and to our cultures?”
Earlier this summer, throughout the month of June, we celebrated the joy of queerness, the joy of embracing one’s authentic self and sexuality. We hold this love and delight in our hearts throughout the year—but we also remember that public Pride celebrations did not come easily: Queer existence has a painful history, and the fights for equality and recognition are far from over.
Throughout these fights, queer widows and widowers have told stories of the saddest moments of their Flives: They were even more helpless than straight people facing the loss of a spouse, because as their partners were dying, they had no legal rights to make decisions. They were helpless in the face of death, as we all are, but also in the face of discrimination, which was legal until all too recently.
Though queer acceptance has come a long way in the past 25 years, and the scale of these problems has lessened — sometimes significantly — after the Supreme Court upheld Obergefell in 2015, they do still exist. Social and cultural attitudes remain prejudiced, and, as a result, many bereaved queer people experience disenfranchised grief; “grief that is not seen as legitimate or meaningful by society or others in their social network,” says Dr. Kailey Roberts, a psychology professor whose research specializes in bereavement and palliative care. This can show up as dead partners being referred to as “friends”; families leaving same-sex partners out of the mourning process because they disapprove; or workplaces not recognizing these kinship ties and refusing to grant time off.
This lack of being seen by and understood exacerbates loss for bereaved LGBTQIA+ individuals, Roberts says. As a man named George Seabold wrote in Gay Widowers: Life After Death of a Partner, an anthology published in 1997 specifically to help bereaved gay men, his grief over the death of his partner was further isolating because, at the time, he was not publicly out.
For many reasons — from historic marginalization to community bonds — the concept of “chosen family” is particularly strong for LGBTQ+ people. As Roberts puts it, “‘family’ includes not only biologically or legally related kin, but also [people] who are highly meaningfully connected and closely involved in each other’s lives but not bio-legally related.” An essay in ColorBloq, an online journal by and for queer and trans people of color, notes that “chosen family” is especially salient for LGBTQ+ people of color, who face disproportionate rates of social and economic isolation. Chosen family, “built on kinship with intentional demonstrations of love, shared history, material and emotional assistance, and enduring solidarity. [It] encompasses a network of social support, intimacy and identity.” These kin relations “are at the center of the activities that sustain a family built on social and cultural connections rather than legal and biological.”
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Older generations, in particular, carry the scars of the AIDS crisis in the 1980s, which was for far too long largely ignored by governments, public health officials, and society writ broadly. While those memories do not exist for younger generations of queer folks, the horror of them has not disappeared. “The collective trauma of the HIV epidemic has been passed down through generations, but we rarely contend with it as a community,” researcher Alexander McClelland writes in Between Certain Death and Possible Future, a collection of essays analyzing the legacy — and current reality — of HIV/AIDS. “The grief and deaths of thousands of gay men, trans women, injection drug users, sex workers, immigrants, people of color, and other marginalized people were not taken seriously then, so how can the grief and fears of subsequent generations be taken seriously now?”
The painful history of HIV/AIDS echoes today as many older queer adults who lost partners and chosen families during the crisis in the 1980s and 1990s enter their later years. The “ongoing societal stigma associated with LGBTQIA+ identities” and the “lack of tailored and affirming resources can contribute to suffering and loss” in this community, Roberts says.
This missing support has real, tangible health effects. Beyond disenfranchised grief, elderly queer patients, on average, face more health issues (mental, physical, and cognitive) and, on top of that, encounter barriers in healthcare settings that sometimes can lead to them avoiding treatment, thus hastening or worsening end-of-life outcomes. An analysis published earlier this year titled “Health disparities among LGBTQ+ older adults: challenges and resources, a systematic review” reported that, in comparison to their heterosexual counterparts, older lesbians and bisexual women have “heightened rates of overweight and cardiovascular disease” and gay and bisexual men have higher rates of angina, cancer, and diabetes.
This report said that evidence overwhelmingly suggests that these health issues are caused by the stigma (including internalized stigma) and isolation older queer people faced throughout their lives—and still face today. These problems can be worsened when they seek healthcare, where heterosexuality is the presumed norm, and doctors are often untrained on the specific issues LGBTQ+ elders face.
Some lawmakers have recognized this reality, and their efforts to solve it are ongoing. Sen. Michael Bennet co-sponsored legislation in 2017 to establish a National Resource Center on LGBT Aging, and in 2021, asked the Department of Health and Human Services for a briefing on the issues facing this population and urged the agency’s leaders to issue culturally competent guidance “to support LGBT older Americans receiving palliative and hospice care.”
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The lack of full social acceptance and recognition also makes the grieving process more difficult, and forces the bereaved to grieve in private or to mask the full extent of their grief.
But when the death of a queer person is able to be marked and mourned in public, the way the deceased would want, it is something to be celebrated. The funeral for Cecilia Gentili — a trans woman, actress who appeared on “Pose,” sex worker advocate, and stalwart of New York City’s LGBTQ community — was a perfect example of the progress that’s been made, and the hurdles queer folks still face. Gentili died in February at age 52, and her funeral drew more than 1,000 mourners to St. Paul’s Cathedral, the same cathedral where gay activists once staged protests against the Catholic Church. While planning the service, her family kept her full identity “under wraps,” according to the New York Times, out of concern that the archdiocese would object to holding a funeral for a trans woman (and the archdiocese did indeed condemn the funeral after the fact). But the memorial itself celebrated Gentili’s true self, out in the open: Her family and chosen family attended — many in outfits described as more likely to be found at a fashion show than a funeral and it functioned, as the Times put it, as “a celebration of her life and an exuberant piece of political theater.”
In “You’re On Your Own, Kid,” a ballad about growing up and feeling alone, pop superstar Taylor Swift sings, “So make the friendship bracelets, take the moment and taste it, you’ve got no reason to be afraid… You’re on your own kid, yeah, you can face this.” The song was never released as a single, and never received much specific publicity, but it immediately became a hit among Swift’s fans (known as Swifties), who admire her emotional, descriptive lyrics.
Legendary singer-songwriter Stevie Nicks counts herself among those fans. At a concert in May 2023, shortly after the death of her best friend and Fleetwood Mac bandmate Christine McVie, Nicks thanked Swift for writing “You’re On You’re Own, Kid,” saying it captured “the sadness of how I feel.” When Nicks attended Swift’s Eras Tour in Dublin, Swift played the song, and fan videos showed Nicks tearing up.
The song also inspired what’s become a global trend: the trading of friendship bracelets between audience members at each show. Many bear messages related to Swift’s discography; some make references to her personal life; some are more on the funny and crude side. Importantly, these bracelets are not for Swift herself — rather, they’re a sign of community.
The combination of friendship bracelets and the message that “You’re On You’re Own, Kid” has for some navigating grief came when Evermore’s founder, Joyal Mulheron, and her daughters went to the Eras Tour opening weekend in March 2023 — their first Taylor Swift concert ever. While waiting in line, Swifties gave Mulheron two friendship bracelets: one that read “EVERMORE” (coincidentally, also the name of one of Swift’s albums, which came out years after Evermore was established), and one with a simple “E,” for Eleanora, her daughter who died.
Months later, this symbolic exchange took on new meaning. Mulheron connected with Lexie Manion, a mental health advocate, to brainstorm ways to memorialize Ana Clara Benevides Machado, a Swift fan who died of heat and exhaustion at the Eras Tour in Rio de Janeiro in November. Reflecting on this meaningful moment months later, Manion suggested, “friendship bracelets!” It became clear that friendship bracelets were a fitting way to keep Machado’s memory alive.
Ana Machado would have turned 24 on July 22, and on that day, Evermore will remember her memory with a hashtag campaign on social media: #LoveIsForEvermore. Among the tweets will be a video honoring Machado, set to Swift’s “Long Live,” a poignant song about remembering loved ones. In recent months, Evermore has been in contact with Machado’s parents, Adriana Cristina da Silva Benevides and Weiny Machado, about this event honoring their daughter.
“For me, she will always be here, she is just traveling. She went to the ‘show of her life’ that’s how she said it. She would come back and tell me all the news about shows. We always talked about everything; we had no secrets. My BeneVIDA, Ana, my beloved daughter, my best friend who will never be forgotten. She infected everyone with her joy,” Adriana Benevides shared with Evermore. “I know that God did the best for her, but my mother’s heart suffers greatly in her absence. I always tell her, the day your heart stopped, half of me left with you, and the other half only exists. I love you daughter.”
“To me, losing a daughter was like losing my soul. The pain tears me apart every time you come to mind; it tears me apart not being able to save you; it tears me apart never hearing your voice again. My beloved daughter, I miss you so,” Weiny Machado said in a statement shared with Evermore. “I want to meet you again, but I know that I still have much to do, so I go on. It is not easy, but I continue for your sake. … Ana, you are my great love – my precious daughter – and I thank God for the wonderful time He allowed me to have you in my life.
Hip hop therapy” was first conceptualized in the 1990s, by Dr. Edgar Tyson. In a2002 academic paper, he wrote that “treatment innovations that are culturally sensitive and demonstrate promise…are of significant importance to practitioners working with at-risk and delinquent youth,” but noted that, up to that point, rap and hip-hop had not been among the tools that had been thoroughly explored. The teens (who had experienced traumatic conditions as children) who Tyson first worked with to hone hip hop therapy (or HHT) made clear that the specific intervention appealed to them: The majority said in qualitative interviews that “they appreciated the ‘respect’ for ‘their’ music” and a handful were prompted “to create their own rap songs and then share and discuss these songs.”
Tyson’s pioneering work has since been built upon by other practitioners, particularly J.C. Hall, who studied under Tyson and now runs a hip-hop therapy studio at Mott Haven Community High School in the Bronx—returning to hip-hop’s original home turf. Hall had his own severe mental health issues as a teen, and writing music helped him get through it. He melded that experience with HHT’s existing research and developed a program called Hip Hop Expressive Arts Therapy (HEAT), which synthesizes various expressive arts therapies (music, poetry, dance, art, etc.) and is characterized by the purposeful use of artistic mediums in treatment, transitioning freely between forms of expression to aid in deeper exploration and promote individual growth, community development, and transformative healing.
Evermore provided a microgrant HHT to film and produce its annual showcase, entitled “Transcendence,” at Mott Haven Community High in June.
Londynn, a student who participated in the event, said performing in it was “emotional” and it “empowered” her to face her fears. During the showcase, Londynn sang to her mother, who was in the audience, a moment Hall characterized as a “beautiful moment of connection.”
“In all honesty, the [hip hop therapy] studio is where you can be yourself, have fun and be free with no judgment,” she added — giving much kudos to Hall, who she said makes “the space a safe and friendly environment.”
Gambino, another student artist, heartily agreed, crediting Hall with being a force that “made me comfortable doing the showcase”: Having a “good person to actually help me and guide me and keep me on track and OK with being on a stage in front of multiple people” made Gambino “love everything about it.”
Gambino added that HHT has helped him navigate other aspects of his life, especially loss, “by helping me put my feelings onto a beat and letting me unleash all the tension in my body that I have built up.”
What followed is a story far too many people are familiar with. Lopes Booth’s father, Charles “Old Briar” Lopes, was Black and Wampanoag, had a “deep mistrust and fear of the medical institution,” she said. “With a lifetime of negative experiences, coupled with the long, ugly history of violence, disrespect, and utter disregard of Black and brown bodies, who could really blame him?” 
After he died, Lopes Booth’s family kept her dad’s body at home for a four-day vigil, celebrating his life. Throughout, they “kept a ceremonial fire going for the four days from his passing until we carried him away for cremation, and folks helped tend to the fire as a way to show love and honor my dad.” During the vigil, the door to his southeastern Massachusetts home was open: Friends, family, and even the hospice social worker visited whenever they wanted, some multiple times.” “We sang to him; read to him; played his favorite card game, Spades, in his room with him; played music for him; spent time in silence with him; shared food in honor of him. He was never alone,” she said. 
“Our elders say that ceremonies are the way we remember to remember,” Lopes Booth said, quoting Braiding Sweetgrass author Robin Wall Kimmer, who is a member of the Potawatomi Nation. “Ceremony is a vehicle for belonging to a family, to a people, and to the land. Through this initiation, this last request, I was able to experience the power of ceremonial remembering at every turn. I felt the whisperings of my ancestors guiding this process. 
Demonstrating that a different way was possible had profound effects on her family. After her father’s funeral, Lopes Booth said her in-laws “completely changed their death plan,” and her “cousin, who’s a tribal medicine man, asked me how he could do this for himself.”
“Funeral directors…resorted to scare tactics. One said this could turn into a really bad science experiment, and another said, I can’t really sell you a cremation container because what happens if your dad’s body rolls out of it”—which added “a little flare to the scare,” she said, a bit tongue-in-cheek. She had to prove to various professionals repeatedly that she was acting on her dad’s behalf—and could plan this unconventional death way so safely and responsibly. “Overwhelmingly, the consistent message was, this is not how we do things, and what you’re trying to do is literally impossible.” 
Though queer acceptance has come a long way in the past 25 years, and the scale of these problems has lessened — sometimes significantly — after the Supreme Court upheld Obergefell in 2015, they do still exist. Social and cultural attitudes remain prejudiced, and, as a result, many bereaved queer people experience 
This missing support has real, tangible health effects. Beyond disenfranchised grief, elderly queer patients, on average, face more health issues (mental, physical, and cognitive) and, on top of that, encounter barriers in healthcare settings that sometimes can lead to them avoiding treatment, thus hastening or worsening end-of-life outcomes. An 
The combination of friendship bracelets and the message that “You’re On You’re Own, Kid” has for some navigating grief came when Evermore’s founder, Joyal Mulheron, and her daughters went to the Eras Tour opening weekend in March 2023 — their first Taylor Swift concert ever. While waiting in line, Swifties gave Mulheron two friendship bracelets: one that read “EVERMORE” (coincidentally, also the name of one of Swift’s albums, which came out years after Evermore was established), and one with a simple “E,” for Eleanora, her daughter who died.
Ana Machado would have turned 24 on July 22, and on that day, Evermore will remember her memory with a hashtag campaign on social media: #LoveIsForEvermore. Among the tweets will be a video honoring Machado, set to Swift’s “