Article 67R5W Inside the metaverse meetups that let people share on death, grief, and pain

Inside the metaverse meetups that let people share on death, grief, and pain

by
Hana Kiros
from MIT Technology Review on (#67R5W)

Days after learning that her husband, Ted, had only months to live, Claire Matte found herself telling strangers about it in VR.

The 62-year-old retiree had bought a virtual-reality headset in 2021 as a social getaway. Ted had late-stage cancer, and the intense responsibility of caring for him had shrunk her daily reality. With the Oculus, she'd travel the world in VR and sing karaoke.

But last January, after 32 failed rounds of radiation, a doctor had told Matte and her husband that it was time to give up on treating his cancer.

[Ted] did not want to know how long he had," she tells me. He left the room." But Matte felt that, as his caretaker, she had to know. When Ted was out of earshot, the doctors told her he had four to six months to live.

On the car ride home, Ted asked if he had at least six months left. Matte decided yes" was an honest enough answer.

Ted took his prognosis in stride-he stayed excited for the next football season, and Matte caught him laughing in front of the TV hours after the news. But he grew too sick to leave the house or, given his fragile immune system, to see guests. Their isolation deepened.

Matte still had the virtual world, though she says, After the death sentence, I didn't exactly feel like singing." Later that month, as she checked out a calendar of live meetups to attend in VR, one event caught her attention: What's this Death Q&A?"

A virtual destination where conversation can veer from the abstract to the incredibly intimate, Death Q&A is a weekly hour-long session built around grappling with mortality, where attendees often open up about experiences and feelings they've shared with no one else. Bright, cartoon-like avatars represent the dozen or so people who attend each meetup, freed by VR's combination of anonymity and togetherness to engage strangers with an earnestness we typically reserve for rare moments, if we reveal it at all.

During my four months sitting in on Death Q&A and similar sessions, I've heard people process cancer diagnoses, question their marriages, share treasured memories of parents and friends who'd passed hours before, turn over childhood traumas, and question openly how we can stare down our own mortality.

Despite the perception that they're just for gaming, more people like Matte are putting on VR headsets to talk through deep pain in their day-to-day lives. The people attending VR meetups like Death Q&A are test-driving a new type of 360 digital community: one much more visceral and consuming than Zoom or the online forums that came before, and untethered to the complex social network that grounds and creates tension in traditional, face-to-face experiences.

These relationships that we make in VR can become very intimate and deep and vulnerable," says Tom Nickel, the 73-year-old former hospice volunteer who runs the virtual meetups with co-host Ryan Astheimer. But they're not complicated. Our lives don't depend on each other."

These people don't share a bathroom. They don't need to get out of bed or look presentable. They just have to listen. Many people call the meetups a lifeline-one that was particularly needed during the pandemic but seems poised to persist long after, as money continues to be pumped into building out the metaverse and loneliness crushes more people than ever.

Building an intimate VR community

Entering Death Q&A plops you in front of an inviting reproduction of a Tibetan Buddhist temple, surrounded by images from a different real-life graveyard each week. People arrange their virtual selves to face Nickel, who stands at the front by an altar. He begins most sessions by asking in a warm, neighborly voice if anyone has come with something specific to share.

About 20% log on from computers, which deliver only a 2D experience; the rest attend using VR headsets, so I put one on too. Wearing it, you hear other attendees so close up-the tremble in their voices, and a bouquet of accents. It's as if they're in your ear, whispering. Laughter and tears seem equally common.

The atmosphere in the sessions feels nostalgic and confessional-spectating has often felt like crashing a church service or family reunion. The crowd brings a palpable curiosity about the lives of the other attendees. Before Nickel kicks off each session, regulars often clump together to catch up; after the hour, most attendees strike up unmoderated conversations and choose to linger.

IMG_0385-noframe.jpeg?w=2890Claire and Ted MatteCOURTESY PHOTO

Matte attended her first Death Q&A right after she learned how soon her husband would die. Though Ted didn't want to know, those people, I could tell how long he had left," she says.

After Matte shared, someone raised their hand to empathize, describing how they'd grieved and recovered from losing their spouse. This is one of the most striking things about Death Q&A-sharing almost always inspires someone else to talk about an experience so similar that participants feel they've found a person who actually understands what they're going through.

I knew by the end of it I was going to attend these every Tuesday at one o'clock Eastern," Matte says.

At Death Q&A, Matte met Paul Waiyaki, a 38-year-old man living in Kenya. Matte, who lives in Georgia, now calls him one of her closest friends. It's just like back when you were in kindergarten, and you would look at someone and go-Hi, I want to be friends,'" she says. As an adult, you don't make friends like that. But on Oculus, with an avatar, you sure can."

Waiyaki says he didn't allow himself to process his sister's death until he did it through VR. Men, in my society, can't be seen breaking down," he explains. At Death Q&A, I was able to put the baggage down. I was able to mourn and cry the tears I hadn't cried before. It hurt to, but I could feel a wound heal as I did."

Saying goodbye during a pandemic

Death Q&A and a similar evening session called Saying Goodbye, which is focused on loss, are just two of the 40 or so live events offered each week by EvolVR, a virtual spiritual community that was founded in 2017 by Tom Nickel's son, Jeremy.

Before starting EvolVR, Jeremy Nickel led an interfaith church congregation in the Bay Area that was very liberal in theology," he says. He was looking for new ways to minister, untethered to the conventions of mainstream religion, when he first tried on a VR headset in 2015.

The lightbulb went off in my head-people feel like they're really together in VR," Jeremy says. That feeling of true presence, as if avatars were really sharing a room together, convinced him that a spiritual community could form among people wearing headsets. He left the physical pulpit to host live group meditations in VR.

Then the pandemic hit. Both Saying Goodbye and Death Q&A began in early 2020-our response to understanding that people would be losing a lot," Tom Nickel says. They knew that maybe people would need places to talk about it," especially as covid precautions took away hospital-bed goodbyes and shrank people's social circles.

Nickel, a cancer survivor himself, had spent years helping the dying depart comfortably as a hospice caregiver. That helped him gently moderate crowded Saying Goodbye and Death Q&A sessions as people joined to mourn friends and family, lament canceled graduations and closed beaches, and air anxiety about the fragility of elderly family members.

Covid-19 also triggered a wave of what psychologists call mortality salience-the realization that death isn't only possible, but inevitable.

Elena Lister, a psychiatrist at Columbia University who specializes in grief, says a healthy level of denial about death is necessary. But now, Lister says, her colleagues are talking about a pandemic of loss that's being felt across society-the product of mass death compounded by stunted mourning.

What those people are doing is having an experience where they're putting what's deeply, deeply painful inside of them into words."

In particular, doctors like Lister worry about complicated grief, a psychiatric disorder diagnosed when, a year after a loss, the pain of acute grief hasn't begun muting. About 10% of the bereaved have it; they remain severely socially withdrawn and despairing, incapable of resuming the activities of their life.

The pandemic created particularly fertile ground for complicated grief. Funerals are meant to kick-start the process of integrating loss into our new reality, but for two years, we couldn't be together to hug and cry and sob," she says. Lister thinks experiencing the pandemic has actually left people more avoidant of discussing death.

To explain the promise of processing grief in VR, Lister paraphrases wisdom from Mr. Rogers: What's mentionable is manageable." When avatars file into Death Q&A, what those people are doing is having an experience where they're putting what's deeply, deeply painful inside of them into words," Lister says, turning raw torment into something workable.

Social isolation makes it more likely that loss will harden into complicated grief. But mourning invites estrangement. Everyday conversation can feel unbearably trite when your loss feels so much more piercing, but after a while people don't want to hear it because they can't fix it for you," Nickel says. Death Q&A hands a mic to that pain and supplies an eager audience; Lister says having that community is great for promoting a healthy progression through grief.

A VR support group might suit you better than a traditional one because there's protection," she says. You can control what's seen about you." Sharing through an avatar, to people you never have to see again, creates a digital veil that liberates people to be shockingly honest and vulnerable.

Indeed, this echoes how Matte describes her VR experiences. I would come and say some pretty bad things in a matter-of-fact voice, and often [Nickel] would say-Whoa, you know, let's stay with this a while,'" Matte says, noting how Ted worried about being a burden. Some days I really don't know how I went without walking around the house bawling all the time ... so I told myself: Get your shit together." Airing her devastation in VR helped her focus on making his death as comfortable as possible.

By 2021, Jeremy Nickel felt his nonprofit organization had reached an inflection point. EvolVR says 40,000 people had participated in its events since 2017. At that point, we can either stay this sweet little thing that's serving a couple hundred people," he figured-or we could make a play and try to share this with a whole lot more."

He opted to create spaces where people can practice this new way to mourn and process in huge numbers.

In February 2022, he sold EvolVR to TRIPP, a Los Angeles-based company, for an undisclosed amount. TRIPP, which raised over $11 million in funding from backers including Amazon the previous year, has offered VR-guided meditations since 2017; the sessions have people do things like visualize their breath as stardust, coming in and out at the ideal pace to meditate.

But TRIPP's VR meditations were solo experiences. By acquiring EvolVR, the company got a chance to tap into the unstructured, relationship-driven world of social VR, which provides a gathering space where anyone can attend events or meet people at virtual destinations open 24/7.

A paradigm shift" for the sick and elderly

Saying Goodbye is Death Q&A's nighttime counterpart, which Tom Nickel also runs on Tuesdays. Avatars gather around a firepit that's lit at the end of each session.

host-meetup-avatar.jpeg?w=564Tom Nickel, next to his avatarCOURTESY IMAGES

Most attendees dress casually, while a few choose unnatural skin tones like bright blue. I dressed my own avatar in drab business casual, hoping to be inconspicuous. But after taking raised hands, Nickel calls on quiet attendees, asking if there's anything on their minds that they'd like to share. During two Saying Goodbye sessions, I surprised myself by answering yes-once to talk about a painful breakup and the next time to share my mom's cancer diagnosis. I'd spoken to friends about both, but venting in VR gave me permission to air the anxieties that their consolations couldn't shake, without worrying about being melodramatic.

The age of participants varies, but most are over 30, and many are over 60. This initially surprised me, though in hindsight, the particular appeal of VR for older people is obvious.

A regular at Saying Goodbye, a user with a British accent and the screen name Esoteric Student, tells me he bought an Oculus on a whim in 2020. That year he lived with his nan, who was seriously ill. He watched her world shrink.

Imagine being an 80-year-old lady and seeing your circle get smaller," he says. So you start off with the boundaries of the house. And it just keeps getting smaller, until you're in one spot. And that's it."

He showed her the Oculus and asked, Want to go on a spacewalk?"

They tried out a popular experience from NASA that lets you view Earth from the International Space Station. It made him sick, but his grandmother loved it. She'd never left the country.

Before she died, she saw more of the world and parts of Mars through real, crystal-clear, immersive images rendered in VR.

I'd spoken to friends, but venting in VR gave me permission to air the anxieties that their consolations couldn't shake, without worrying about being melodramatic.

Coming from the Great Depression to running to bomb shelters in Birmingham to eventually spending her last days being able to ascend, in a way?" he explains, crying a little bit. It's a paradigm shift."

Some familiar faces at Saying Goodbye and Death Q&A are terminally ill or disabled. VR can offer a path to friendship and fresh experiences that cuts through people's physical limits. It can also help the elderly avoid the loneliness they might feel as they watch friends die and children move away, and as retirement removes them from the working world.

Matte experiences mobility issues herself. So I can go in VR and run, jump off a building-you know, everything under the sun," she says. Be young again, really."

How far virtual support can go

Despite all its promise, at least one thing about processing emotions in VR makes Lister nervous: How do you know if people are so distressed they are at risk of harming themselves?

It allows for more hiding," she notes. When people interact as avatars, the nonverbal communication that psychiatrists are trained to notice, like hand gestures and fidgeting feet, is simply lost.

And the name Death Q&A can particularly attract people in crisis. Toward the end of one Death Q&A session I attended in September, an avatar in a lime green snapback, who sounded young, asked if he could speak. He'd tried to kill himself a few weeks before and said he'd found immense peace in the decision. But having survived, he told us, his behavior had changed-he was flirting with girls nonstop and found everything funny. He came off as strikingly light and unbothered. His question was: I'm still here. Now what?

Nickel sprang into action-offering, with a gentle urgency, to connect him to other survivors of suicide and asking if the young man could talk one on one after the session.

I have to do my best to understand: Are you in a safe place right now?" Nickel says he asks himself when an attendee shares something that worries him. In addition to working in hospice, Nickel also previously worked as the director of continuing education at the California School for Professional Psychology, where he took and helped develop workshops on suicide awareness and response. But he says these trainings all need updating and rethinking for VR.

I think that the best I can do is to offer a daily, hearing, non-judging, non-trying-to-save-anybody contact," he says. When people in the meetup seem shaky," Nickel DMs them and shares his personal email. The boy in the snapback never replied. But some people do. And in a couple of cases, I called every day."

Lister agrees that anyone expressing suicidal ideation needs repeated support from someone highly trained. She says that if you're going to do grief work virtually, there needs to be a full understanding of how to reach this person, and what the follow-up is"-though, even in person, you can't make anyone return to get help.

The more muscular tools of suicide prevention, like constant monitoring and physical restraints, are also not available in VR. If somebody came to me in person and said they were suicidal or had tried to end their life last week, I would have great pause about having them leave my office until I felt like I could secure their safety," Lister says.

All I had to do was put on a headset"

In the months after Ted's prognosis, Matte updated her new friends and fellow avatars as Ted's voice gave out and his legs shrank from sturdy to emaciated.

Then, two nights before Ted died, he suddenly awoke, full of energy, and asked his wife if they could order Chinese food.

At Death Q&A, I was able to put the baggage down. I was able to mourn and cry the tears I hadn't cried before. It hurt to, but I could feel a wound heal as I did."

He'd slept through the day and hadn't eaten or taken his medicine, which terrified Matte. That night they enjoyed pork fried rice together on the couch; Ted ate more than he had in weeks. He put the Cubs game on in the background-he was a loyal fan, despite being from New York. He loved an underdog," Matte says.

It was his last solid meal. Ted Matte died June 11, 2022, at age 77.

Matte decided to attend Death Q&A and Saying Goodbye two days later. I sort of surprised myself, being able to go," she says. But all I had to do was put on a headset."

Unlike most sessions, which move from person to person, the meetings were mostly spent on Matte. Attendance at Saying Goodbye that night doubled; people said they'd come to support Matte. Through months of meetups, they'd come to feel like they knew Ted. She told them about the process of his death and their conversations in hospice. I said that I would be okay. And I knew he loved me. And I loved him dearly," Matte says. And so you give the person permission to die, really."

Attendees offered condolences and asked questions. Matte says people are interested to compare and learn" about how peers experience a similar loss differently.

On the EvolVR Discord a month after Ted's death, Matte shared that she'd gotten four straight nights of good sleep: I'm onto something." Three months out, I joined Matte in a Death Q&A session where she shared the frustration of handling an earache without Ted: I just want someone to commiserate with!" That prompted a first-time attendee to speak, through sobs, about her husband's death a year and a half earlier. Matte invited her to Saying Goodbye that night and stayed after to comfort her.

It's now been six months since Ted passed. Matte feels she's reached a turning point; she says the edges of her grief have softened. But it saddens her to move further from that anniversary. She still spends a few hours in virtual reality each day. Some days she'll do a meditation session, or play a game with friends. But her Tuesdays remain bookended by grief meetups.

Matte acknowledges Death Q&A isn't for everyone. She says close friends have questioned whether the meetups are cultish. But sharing her grief in VR and offering what she's learned has felt like a warm blanket, to be honest."

I don't know what my journey would have been like without it," she says. But I have to envision it as much worse."

Hana Kiros is a former Emerging Journalism Fellow at MIT Technology Review. As a freelancer, she covers science, human rights, and technology.

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