Illustration by Janie Hao

“The trust is, of course, that there is no journey. We are arriving and departing all at the same  time.”

—David Bowie

The Parisian night sky is charcoal grey. Fog rises from the Seine like a lonely apparition and is swept away by the glare of Notre-Dame Cathedral’s lights. At Point Zero, the famous symbol that marks the centre of the ancient city, stands a Christmas tree decorated in purple lights. People crowd around taking photos. Somewhere in the distance a siren blares. The air smells of mulled wine, roasted chestnuts, and wet limestone. I breathe in, savouring it all. It’s the last Friday of 2018 and our last night in Paris.

My husband, Mark, and I are standing in line for the cathedral among a motley group of tourists, Christmas revellers, and worshippers. Around my neck I wear a blue velvet ribbon decorated with a hand-blown glass bead, the exact blue of a Paris sky in June. When we arrived in the city I had five beads. Over the past two days, Mark and I have zigzagged across Paris, leaving beads behind a balustrade in the Palais Garnier, in the Fontaine Saint-Michel, from Pont Neuf into the Sein, and in front of an old tree near the stairs leading to Sacré Coeur.

This is the last.

The beads were custom-made for us by a glassmaker, and each contains a speck of Indy dust—this is what I call the cremated remains of my daughter, India. Each bead is about the size of a gumball. They are decorated with musical notes, birds, and stars—symbols that tell India’s story.

The last time we were in Paris, India was still living. She was 11 and in love with the history of the city. She could still walk and do most of the things healthy kids do. The rare neurodegenerative disease spinal muscular atrophy with progressive myoclonic epilepsy (SMA-PME)—to which she would eventually succumb at age 16—was still relatively controlled.

Mark and I decided to leave our last Indy bead at Notre-Dame cathedral, because my husband remembered he and India climbing the 422 steps up to the tower on that visit. India had watched the Disney version of The Hunchback of Notre Dame and was eager to see the famous view. I remember waiting outside, looking up towards the tower and worrying. I was afraid India would fall down the staircase or exhaust herself. Instead, she was invigorated, grinning broadly when she returned, as if she’d climbed a tall tree and swung from one of the highest branches.

Since India’s death in 2013, Mark and I have left beads in the U.S., Japan, England, Canada, and Portugal—places she loved or wanted to visit. It’s our way of staying in communication with India and keeping her in communication with the world.

The word bead comes from the old German word for pray. It’s related to the medieval English custom of praying with rosaries to count bedes. This makes sense to me as when we leave a bead, I feel as though I’m speaking with my daughter. To me, India is as close as it gets to a deity.

Of course, I’m not the first to feel this way about a loved one who has died. According to Charles W. King, the author of The Ancient Roman Afterlife, the Romans believed that after death ordinary people became deified and were called Manes. These God-like dead were worshipped by their families and it was believed they had the power to look out for their living relations. Every February, the Romans celebrated a nine-day festival, devoted to their family’s dead, called Parentalia. Families gathered to remember their dead relatives and brought offerings of garlands, salt, and bread softened with wine. They hung out at their relatives’ tombs and ate meals, to reconnect with those they’d lost.

Joseph R. Lee, a certified Jungian analyst and one of the hosts of the podcast This Jungian Life, believes we’d benefit from more such normalized traditions around connecting with our dead, in modern times. In Episode 217 – Death: A Jungian Perspective, he says:

“Certainly we deprive ourselves of the kind of elegant religious ascetic that many more ancient cultures have been able to cultivate. In part because lacking the technology we have in the modern age, they could not forestall death in the ancient world and therefore developing an attitude of acceptance was essential. But also it seems that death was considered an intrinsic and essential part of life. One of the religious shapings around death, was the certitude that the ancestors continued to be in intimate relationship with their progeny—facilitating, protecting, helping, nurturing.”

I envy the Roman’s their public proclamations of grief. These days, I hide the fact I’m a bereaved mother until I’m sure I can trust people. I nod my head and smile as people talk about their kids, pretending I never had any. Grief has made me a liar.

I found a baby’s epitaph on the Vindolanda Trust blog—Vindolanda is the name of a historical Roman auxiliary fort just south of Hadrian’s Wall in northern England. It serves as a poignant reminder of the universality of parental love. To put this in perspective, in ancient Rome one-third or one-quarter of babies died in their first year of life. Parents may have, as Lee suggests, been more accepting of death as part of life, but they were certainly not immune to the pain of loss.

“My baby Acerva was snatched away to live in Hades before she had her fill of the sweet light of life. She was beautiful and charming, a little darling as if from heaven. Her father weeps for her and, because he is her father, asks that the earth may rest lightly on her forever.”

Mark and I are the last two people allowed into the cathedral. As I slip through the great door, I feel as though I’m leaving one world and entering another. The commotion of modern Paris is suddenly very removed. The inside of the cathedral looks as if it’s been covered by a gauzy lavender-grey shroud; lights and candles flicker throughout the building, but behind every pillar and column there’s darkness.

Only the brilliant gold cross and the priest in his crimson robes are well lit. Bells ring, and voices mumble prayers that sound like spells. We sit for a while and take it all in. I watch people light candles and wonder how many of them are talking to their dead.

I talk to my dead daughter all the time. Sometimes, I just tell her that I miss her; at other times I ask her to help me—like when I’m scared walking the dog alone late at night or driving in a storm. I’m aware there’s a good chance that I’m talking to myself. I don’t care.

Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona and the author of The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, explains needs like mine like this, “In humans as well, it is because your loved one existed that certain neurons fire together and certain proteins are folded in your brain in particular ways. It is because your loved one lived, and because you loved each other, that means when the person is no longer in the outer world, they still physically exist—in the wiring of the neurons of your brain.”

When I first read O’Connor’s last line, I read whirring, not wiring. This seemed like a better description of what my grief feels like. It’s as if my brain is filled with the constant hum of grief and worry. Only talking to my daughter quietens it.

I heard about the Wind Phone from a friend. Overlooking the Japanese city of Ōtsuchi, this shrine is composed of an old-fashioned phone booth and a disconnected black rotary phone. But it is no ordinary phone; it allows the bereaved to talk to those who have died—the idea being that the wind carries the mourners’ words to their loved ones.

Created by Itaru Sasaki, to honour a beloved cousin he lost to cancer, the shrine now receives over 30,000 visitors a year. First opened to the public after the devastating tsunami in 201l, the Wind Phone offered relief to people who didn’t get a chance to say goodbye to the loved ones they lost. Today replicas of the shrine have sprung up all around the globe including in Quebec, North Carolina, and Dublin.

If the thought of using a dial-up telephone to talk with your dead seems too old-fashioned, there’s now the Here After app. It works like this: a virtual interviewer offers prompts in order to help the participant share stories about their childhood, relationships, passions, and interests. These are recorded and stored so that loved ones can ask questions and interact with, thanks to the magic of artificial intelligence, the participant’s virtual avatar on their phone or computer—even after the participant has long since died.

It sounds appealing, particularly the opportunity to hear my daughter’s voice again. If I close my eyes, I can still imagine the sound of her calling me or singing one of the showtunes she was so fond of. Nothing makes me happier than when someone tells me a story about India or sends a photo. I’m always appreciative—after all I’m aware that the photos and stories I have are it. There are only so many of these in existence. I can easily imagine I might become addicted to the Here After app. Constantly relying on it to give me an India fix whenever I craved it. But the true work of grief is learning to create this kind of experience for one’s self. That is why leaving the Indy beads in places Indy had loved was so important to Mark and me. At each place, we built a new connection and memory with her.

“Almost a third of Americans say they have communicated with someone who has died, and they collectively spend more than two billion dollars a year for psychic services on platforms old and new,” says Casey Cep, a writer for the New Yorker.

Throughout my daughter’s illness I blogged about our lives, sharing our experiences in and out of the hospital; the possibility of a treatment, when a university research team took an interest in her rare and degenerative condition; and then the shattering reality of her death and learning to live without her. It was all there, hopefully to help other people going through similar ordeals. But I soon learned that seeking solace in their grief was not the only reason some people sought out blogs and social media posts about death and bereavement.

Three months after India died, I received an email from a so-called psychic in England. She told me she’d been contacted by a little girl she believed was India. She said that the girl’s head hurt and that she was crying for her mummy. She wanted my consent to speak to her. Of course, she assured me, she didn’t want money, just to help. The letter filled me with panic. Later when I thought about it logically, I felt angry that someone had attempted to use my grief against me.

People are always recommending psychics to me. I tell them, I don’t need anyone else. I feel India with me and communicate with her in my own way all the time.

I may be alone in this. Many people seem to prefer to employ professionals, to connect with deceased loved ones. Cep says, “Like clairvoyants in centuries past, those of today also fill auditoriums, lecture halls, and retreats.” The first Spiritualist church appeared in the 1840s in upstate New York and by the 1860s, they had followers throughout the world.

The Spiritualists believe in communication with the spirits of dead people through gifted mediums. Cep says, “there are more than a hundred Spiritualist churches in the United States, more than three hundred in the United Kingdom, and hundreds of others in more than thirty countries around the world.” There are spiritualist churches across Canada from Vancouver to Ottawa. Though, I don’t feel the need for a session with a medium, I do find myself wondering what it would be like to sit in one of those churches in the company of others, who like myself wanted nothing more than to talk to their dead.

Mark and I venture into the cathedral’s ambulatory, hoping to find a good resting place for our last Indy bead. As I walk, I think about the history buried beneath the stone slabs we are walking on; the 4th century basilica and 9th century Carolingian cathedral that once stood here. For hundreds and hundreds of years, this piece of land has been the real estate of the bereaved and grief-stricken, all pleading with their dead for a sign.

When India was dying, I remember whispering in her ear, telling her that I loved her over and over. If she had to die, I wanted it to feel like falling into a sleep. I have always imagined death to feel like being pulled under. Like Alice falling through the rabbit hole in Alice in Wonderland but instead of furniture floating around, scenes from one’s life float by.

Further back still, the Notre-Dame Cathedral was once the site of Lutetia, the Roman predecessor of Paris. The Pillar of the Boatman, the oldest piece of sculpture in France, was discovered here. Dedicated to the Roman god Jupiter, it was a gift to the Roman Emperor Tiberius from the Guild of Boatmen of the Seine, a group of Gauls. For me, the name of the piece conjures images of the Seine as a sort of River Styx, separating the living from the dead. I imagine boatloads of deceased Parisians making their way down the grey, cold river.

The sculpture is considered a rare find as it features symbols treasured by the Celtic Gauls as well as Romans. One of the featured Gods is the Celtic Gaul’s horned God, Cernunnos—an imposing being that bears an uncanny resemblance to Tim Curry’s character in the 1985 movie, Legend. Not much is known about this character, but it’s easy to imagine him, calling one to the shadows, begging one to join him on the other side.

Picking the exact spot to place an Indy bead is always difficult. Sometimes it takes a while. We always wander back and forth from place to place, trying to decide, hoping to get it perfect. This feels like an important part of our conversation with India.

Finally, we decide on a hiding place. The marble statue of Joan of Arc by Charles Jean Desvergnes, built to commemorate her beautification in 1909. Other than the Virgin Mary, it may be the only other feminine presence in the building. Regal in her helmet and armour, the Saint wears her sword hanging from her hip. Her hands are clasped in prayer. She has the kind of feminine teenage energy I admire. And like my daughter, she was forced to sacrifice everything.

I tuck the bead under Joan of Arc’s foot. Usually, we hide the bead a little, place it under or behind an object. It’s not that we don’t want it found, we just don’t want it to be found too easily. It’s like we’re testing the person who will discover it—like parents meeting their teenage girl’s boyfriend for the first time. We want to make sure they have the appropriate sense of wonder.

Four months late, in April when the fire breaks out at Notre-Dame, I’m glued to the news, as orange flames engulf the spire and the roof. Great wafts of grey smoke circle the ancient building, while toxic dust and lead spew forth contaminating the surrounding area.

I wonder if the little blue Indy bead is still under St. Joan’s foot. I imagine at the first sign of the fire, St. Joan’s spirit lifting from the statue, and wandering angrily about the cathedral, saying “Not this again. I told you God, I’m done with fire!”

It’s strange to think of a monument this magnificent, vulnerable to something as trivial as, say, faulty old electrical wires or a dropped cigarette. Before succumbing to the fire, the cathedral had survived more than 800 years of plagues, revolutions, and wars.

Part of me hopes the Indy bead was found soon after we left it in the cathedral. A lucky talisman that the discoverer takes everywhere. Maybe, they whisper to it when they are afraid or anxious, roll it in their palm, admiring its beauty. I like that thought. This way India’s story continues independently.

There’s another part of me that likes to think of the Indy bead lost in all the rubble and ash surrounded by all that glorious art and history. I picture the spirits of India and St. Joan wandering through the cathedral and pranking the construction team tasked with the rebuild, moving their tools from place to place. I imagine the two of them talking about boys and giggling over plans to spook the night watchman. Racing up to the highest remaining point of the cathedral so they can watch the living saunter by, and comment on how fearful they seem.

Last December, at a creamatorium in Nottinghamshire, England, a Postbox to Heaven was installed thanks to nine-year-old, Matilda Handy, who wanted to stay in communication with her grandparents who’d both passed on. Matilda told ITV Central, a U.K. regional news network, “It was very nice because I’m very upset and it’s just a very nice way to express my feelings and send a letter to them and to say how much I love them.” Within two months, the box had received a hundred letters. The crematorium, which is part of the Westerleigh Group, is now rolling out postboxes to heaven across the U.K.

When I found out about the Postbox to Heaven, I thought about the first time India went to overnight summer camp. She was nine and very excited, because it was a riding camp. I was worried she’d be lonely so I wrote a letter for every day she was away. I did my best to make the letters special. Each one was written on fancy paper with colourful envelopes decorated with stickers and drawings. I spent a lot of time thinking about what to say and drawing pictures of things she liked. I remember writing her name in big loopy letters on the envelopes and putting a heart over the I instead of a dot. I put all the letters in a little cloth drawstring bag and tied it with a bow.

After a week, India returned home from camp, exhausted and smelling like a horse. She’d had a great time. As I was throwing her clothes into the washing basket, I noticed the drawstring bag was still closed with the bow. I opened it out of curiosity. Not a single letter was open.

“India, why didn’t you open my letters?” I said, a little hurt.

“Oh, I was so busy, Mummy,” she said. “I forgot.”

Later when I was complaining to a friend about India and the letters, she’d laughed and said I should be happy I’d raised such an independent child. Looking back, I now realize the letters were just as much for me as they were for India. I needed to express how much I was thinking of her. That’s still true today. It doesn’t matter whether she actually hears me or not, when I place her beads in special places and talk with her inside my head.

Paris was the last trip we made with Indy beads, before the pandemic put travel on pause. Last September, less than three years after the Notre-Dame Cathedral was devastated by fire—Mark died. He was diagnosed on his 64th birthday with stage 4 Melanoma and died a month before what would have been his 65th.

Before Mark’s illness, I thought I knew what it was to watch someone suffer. For years, I’d watched India tortured by seizure after seizure. This was different. Mark’s cancer struck quickly and consumed him entirely. One moment, we were planning trips in our trailer, the next I was holding him up in the superstore because he couldn’t breathe. In six months, he went from 220 to 150 lbs. At the cancer clinic where he’d taken his immunotherapy treatment, his nurse asked if I was his daughter. I was only eight years younger than Mark.

Since becoming a widow I’ve spent a lot of time thinking about the past. It’s a strange feeling to be the lone survivor of the family I created. It’s like we all went to war and I’m the only one who returned. The only one left to tell our story. Still, there are times I struggle to believe they are really both gone, or that I once had a child and a husband. So much loss is hard to grasp.

In her article “Walking in the Dark: Creating a New Virtual Map in Your Brain After Loss,” Mary-Frances O’Connor says:

“When we experience a loss through death, our brain initially cannot comprehend that the dimensions we usually use to locate our loved ones simply do not exist anymore. We may even search for them, feeling like we might be a bit crazy for doing so.

If we feel that we know where they are, even in an abstract place like Heaven, we may feel comforted that our virtual map just needs to be updated to include a place and time that we have never been. Updating also includes changing our prediction algorithm, learning the painful lessons of not filling in the gaps with the sights, sounds, and sensations of our loved ones.”

When Mark was in the hospice dying, he told me if I was going to make it after he died, I’d have to forget him and India—pretend they never existed. He was suggesting I wrap up the conversation and move on. When he said this, he was no longer the Mark I’d always known. The cancer and the drugs had changed him. He’d become unbearably frank, sometimes saying things that hurt my feelings. The way he saw it, I suppose, there was not enough time left for niceties.

At the time, I nodded and smiled. But I never once entertained Mark’s suggestion. We were together for 30 years. I’d lived with him longer than I’d lived without him. As far as I was concerned it was not an option to stop talking with the people I loved most, regardless if they were living or dead, listening or not. It would be like losing my leg in an accident and pretending I’d never loved to dance.

At the moment, Mark’s ashes are in my underwear drawer in a plain cardboard box. Eventually though, I intend to have some beads made with his ashes. I will have some more Indy beads made as well. My plans aren’t definite yet, but I’ve been thinking about placing some of their beads in Rome. Mark lived there as a child. He talked about the city the way one might a lost love. We always meant to go there together but we never did. Still, I know all about the city from the stories he told me. How he played in the Villa Borghese gardens and around the Colosseum. I imagine our conversation will continue once I’m there. I look forward to this with all my heart.

Design by Valerie Thai

Piercing through the chaos of chance and unexpected plot twists that we encounter throughout our lives, there is one stark and certain truth: we’re all going to die.

Yet, our death-phobic society has taught us to fear the only thing we know for sure. Even talking about death evokes superstitious reactions, as if speaking the word aloud is a death sentence in itself.

Death has surrounded us during the pandemic, with millions tragically losing their lives to COVID-19 worldwide. Though we hear about death daily, most of us remain detached from the experience. The whole thing is a terrifyingly mysterious taboo.

Death doulas think we can do better.

As part of a burgeoning death-positive movement, end-of-life doulas support people on their journey toward passing away. They fill a key gap in the typical medical dying process by offering a simple, yet radical, kindness that asks people what it means for them to die well, and makes their vision a reality.

Sue Phillips signs her emails quoting author Haruki Murakami: “Death is not the opposite of life but an innate part of life.” It’s a guiding philosophy for many death doulas.

“We just allow people the space to fully experience what they’re going through,” says Phillips, a death doula in Hamilton, Ontario, who found her calling after retirement. “[We are] really just trying to help people not be as afraid.”

By providing non-medical support and companionship from terminal diagnosis to death, end-of-life doulas like Phillips help the dying clear their practical to-do list and inner consciousness so they can cross the threshold with as much ease as possible.

They encourage clients to plan for what they want their deaths to look and feel like. They assist with paperwork, funeral arrangements and celebrations of life, and offer respite relief to primary caregivers. And they normalize conversations on death and grief through death cafés—informal gatherings where people can talk freely about topics related to dying.

For Phillips, the heart of the work is emotional, guiding clients to say what they need to say, forgiving and asking forgiveness before it’s too late.

“That might be something that a family would turn to a [death] doula for,” she says. “That person is going to advocate for you; that person is going to get you the information you need, or that person is going to sit at your side and let you talk about your emotional feelings, what you’re going through.”

Death doulas are self-regulated through the End of Life Doula Association of Canada, where Phillips sits on the board of directors. The Association connects death doulas across the country, overseeing quality assurance, continuing improvement, and providing education and networking opportunities.

Because the field is not officially recognized, death doulas’ services are not covered by provincial or private health care plans and insurance. Though this gives them flexibility to offer personalized care, there can be cost barriers and little awareness of their offerings.

Yet, without death doulas, many people die unsupported, with their goals for a good death unexamined and unfulfilled.

In Phillips’ experience, most people want to die at home surrounded by their loved ones.

“That’s kind of how it goes. They want to die at home, then hospice, then hospital. Long-term care is like the final choice. They don’t really want to go there,” she says.

Although 87 percent of Canadians wish to receive end-of-life care at home, the majority die in hospitals. The situation has worsened during COVID-19, where the proportion of deaths in hard-hit Canadian long-term care homes has been much higher than the international average.

Phillips says most of her clients don’t want to suffer, either, preferring medical assistance in dying if suffering becomes unbearable. But the medical system often defaults to acute care, seeing death as failure and prolonging it against some people’s wishes.

When Chrystal Toop’s beloved Métis grandmother passed, she was buried with tobacco in her coffin. Toop was angry and confused. Because her grandmother was a smoker who died of cancer, Toop felt like she was being buried with a symbolic weapon.

Toop, an Algonquin death doula from the Pikwàkanagàn First Nation in Renfrew County, Ontario, didn’t understand the significance of tobacco at the time. Colonization, systemic racism, and the legacy of the residential school system—of which Toop’s great grandparents were survivors—took many aspects of culture and language away from her family.

“It was around the end of my twenties that I finally started to make the connections of culture and [the tobacco] finally made sense. What they had done was ceremonial, and it was spiritual, and to show her that she had a safe journey back to the sky world.”

Her grandmother’s death had a lasting influence on Toop, encouraging her to bring cultural practices and plant medicines back to Indigenous people through her decolonial death doula work.

As demand for Toop’s services increased staggeringly during the pandemic, she turned to her mentors to co-found the Indigenous Death Doula Collective, serving Hamilton to Thunder Bay, Ontario. To widen their reach, the collective created Indigenous death doula training for youth, which Toop says is the first of its kind in North America.

The wildly successful program intended to reach 20 youth, but has a waitlist of over 200, is informed by Toop’s personal philosophy that death work is life work that begins at birth. “Society is designed to kill us. It’s that genocidal reality of Canada for Indigenous people…. the reality is, we’re always fighting against our own early deaths,” she says.

What makes Toop’s death doula work unique is the fact that it isn’t only about guiding people to die well. Because the average life expectancy of Indigenous people is up to 10 years less than settler Canadians, her approach also relies on harm reduction strategies to fight against early death. “One of the things I say is that we have the right to die of old age,” says Toop. “That’s all we want. We want Indigenous communities to realize that fantastic reality of becoming an old person, because that’s not typical.”

At four years old, Kim Winnicky was choosing a casket and planning her funeral. But she wasn’t dying. Growing up with a funeral director father, she always felt comfortable knowing that death is a natural part of life.

“Holding space for all that is involved in the end of the dying process is really powerful work,” says Winnicky, an end-of-life doula and hospice volunteer in Whitehorse, Yukon. “I just feel called to it.” When Winnicky sits vigil at a person’s bedside as they die, she feels that power viscerally. “Sometimes the feeling is very calm … and sometimes it’s a feeling of fear and clinging,” she says. “My work is to ground into equanimity and steadiness … that seems to help temper those waves and just sort of bring this grounding radiance into the room.”

Winnicky treats the dying with healing touch—a therapy that balances a person’s energetic fields. Clients have reported profound impacts, including Winnicky’s own mother, who said it was more effective than morphine at controlling her pain from chronic obstructive pulmonary disease.

Simple physical touch can be the comfort that someone needs to release into a peaceful death—Winnicky has seen it firsthand. But during the pandemic, with visitor restrictions in medical facilities and care homes, many have died alone without any loving touch at all. “That breaks my heart for everybody in that situation,” she says.

Everyone’s idea of what it means to live and die well is different. But for Jody Roberts, a death doula based in Coquitlam, B.C., there’s one common thread: love.

“At the end of the day, nothing is permanent but love. We have to ask ourselves, did we love well and were we loved? Did we love ourselves and did we love ourselves enough?” says Roberts.

It’s an influential aspect of Roberts’ work, encouraging clients to engage in these deep emotional and spiritual reflections well before they die. One of Roberts’ clients was a lawyer struggling with losing his identity late at the end of his life—an identity tied up with the achievements that he worked so hard for, but that he couldn’t take with him. It seemed to make his transition uneasy.

“It’s why we need to loosen our attachments before the end and stay attached to love. You can take love with you everywhere, but you can’t take people or things,” Roberts says.

With the help of death doulas, she thinks Canadians are realizing that a better death is possible, and that it actually starts by living fully. And for the living, recognizing that grief is a manifestation of loving what you lost can be a powerful way of moving through the hard feelings. “It’s about loving fiercely every day,” she says. “And loving life so you can end well.”

Death is with us every day—it’s a fact of life. And it feels more present than usual, with the pandemic dragging on and an anticipated increase in cancer deaths due to the pause in elective screening procedures.

But, while death is inevitable, having a tumultuous and fearsome dying experience is not. Death doulas know that the final chapter of our lives can be magnificently powerful, if we embrace it.

Illustration by Moe Pramanick

I haven’t suffered loss nearly at the scale of many people since the pandemic started. But I have suffered loss. And I’ve been preoccupied with what to do with that feeling, during a time when touch and physical presence are treated on par with the deadly disease that they could spread. I’ve struggled to process tragedy when it keeps being supplanted with newer tragedy.

My first experience with loss during the pandemic happened in the summer of 2020, after our first round of provincial shutdowns. I had spent a couple of months

learning how to socialize remotely and had made a regular habit of messaging friends with a level of intention that didn’t exist before 2020. It seems fitting that the news would be relayed via an Instagram DM. A friend responded to a casual message of mine with the news that another of our friends had just passed away.

It’s hard to forget the visceral feeling of numbness I felt in that moment, and yet I have a very foggy memory of the hours that followed. It didn’t seem possible in the early months of the pandemic, but I somehow disconnected even more from my surroundings. In the hours and days that followed, I struggled to understand what I was feeling. All of my friends and social life had become abstractions: texts, social media interactions, and video chats. It didn’t feel quite real to think of losing a friend even beyond that.

True to the early months of the pandemic, I eventually came to terms with not knowing. I never found out exactly what the cause of death was, and didn’t feel the urge to know. I was still sanitizing my groceries and pausing my runs until sidewalks were clear. Nothing about our world felt certain, least of which being whether this friend had contracted COVID-19 or was the victim of a backlogged hospital system. I had resigned myself to accepting so many uncertainties that by the time I actually was able to speak with friends in person about her passing, I didn’t feel like I had anything meaningful to say about it.

About a month and a half later, I was driving back from a camping trip in the Kawarthas when my brother called me and told me my aunt in Calgary had just passed away. He called me just as I got on the road. I spent the rest of the two-hour drive quietly losing the post-camping trip high and preparing for an uncomfortable emotional setting. I walked into my family’s household, filled with tears and silence. My aunt had suffered a heart attack on the front steps of her house. By the time anyone realized what had happened, it was likely too late. She was taken to the hospital but passed away soon afterwards.

In the days that followed, my father expressed his need to fly to Calgary to be with his brother and family during the funeral. I decided to accompany him. In the lead-up to meeting my relatives in Calgary, I was preoccupied with the terrifying logistics of a domestic flight as COVID-19 rates seemed to be increasing. But once we arrived, I experienced something I hadn’t felt in almost a year: human emotion overwhelming our strict compliance with pandemic precautions. While we continued to wear masks in public and socially distance with extended family and friends, I was very aware that we were stretching the idea of a “social bubble” beyond recognition. I can’t justify my compromises, but I don’t regret them either. Immediately wrapping a crying cousin in a hug was an instinctive reaction. It might have been the first spontaneous moment of physical embrace I’d experienced since April 2020.

However, the grieving process and actual funeral were undeniably overshadowed by the pandemic. In Punjabi culture, friends and family will individually visit the grieving family. I’ve always suspected that the small talk over tea and biscuits, punctuated with genuine expressions of sadness, anecdotes, and comforting gestures, creates a sense of repetition that helps avoid wallowing. Understandably, fewer people felt comfortable visiting in person. In the absence of ritual and activity, our family sat uncomfortably in the sadness and the silence.

The actual funeral was filled with reminders of how our ability to comfort and grieve was impeded by the pandemic. Seating was spaced out, and almost half of the attendees were seated in another room and viewed the ceremony from a livestream. I watched the only visible parts of my family’s masked faces become wet with tears, from six feet away. Eventually, the dam did break and people began ignoring COVID-19 measures, intermittently taking off their masks and holding each other. My sadness was interrupted with thoughts of how the news would cover a possible super-spreader event at a Punjabi funeral. The pandemic always had a way of inserting itself back into the picture.

I was spared personal loss for several more months (other than a COVID-19 scare in my immediate family). I spent a lot of that spring tweeting about local and global vaccine inequity. I don’t think I was the only person feeling guilty over their ability to get vaccinated while poorer, more precariously employed people were neglected. I knew I benefited from Canada’s ability to hoard vaccines, while countries with less access to vaccines were succumbing to more infectious variants.

In June, my younger cousin and uncle in Punjab contracted COVID-19. First my cousin, and then my uncle, were hospitalized and placed on ventilators. My family anxiously and helplessly waited for daily updates for over a week. And a few short days after we celebrated the fact that my cousin recovered and was discharged from the hospital, my uncle succumbed to COVID-19. Once again, I found myself in a household filled with tears and conspicuous silences. Only this time, we were under no illusion that we would be able to attend the funeral in person. I watched my father break into tears every day speaking on the phone with his crying nieces. Even fewer people visited our house in order to console him than when I visited Calgary. We conducted a Sikh prayer virtually with family in Canada and the U.S. in an attempt to capture some sense of togetherness and comfort. But it felt like the smallest of comforts. The larger-scale issues I had spent the last few months ranting about had come for my own family, and there was nothing we could do about it. A month later, my brother got married and I felt like we pushed away a sadness that we could do nothing about, in order to feel joy and celebration.

These were three wildly different experiences of loss, but each time I felt like I was forced to abbreviate my grief. Sometimes I butted up against the uncertainty of the pandemic, other times against concrete health risks. In every instance, I simply resigned myself to not being able to feel what I wanted or needed to feel, unencumbered by our new reality.

I found myself craving the grieving rituals, the familiar gestures of compassion that could feel tedious before the pandemic. I suspect we will all need time to come to terms with who and what we’ve lost (regardless of the scale of that loss).

I can’t pretend to know what to do now with these suppressed, abbreviated feelings; I just can’t remember a time when my ability to feel and process grief was this obstructed. With this pandemic still having no definite end in sight, most of us, at the bare minimum, could benefit from acknowledging that reality.

LLUSTRATION BY JULIA GALOTTA

After my father died, I looked for him everywhere. Time crept forward in my one-bedroom apartment and my boyfriend might’ve been the only reason I even noticed the passing of days. His comings and goings signalled whether it was time to grieve at my desk, on the couch, or the bed. My desk, hardly a writing space anymore, became a place to search for my dad. I typed his name into my browser daily.

On one of these days, I was looking through my cloud storage for something when I found an unfamiliar folder in the “shared files” section of my account. It was simply titled “Google Photos.” I clicked and found several more folders and dozens more inside them, all with names like “Christmas_2013_Pics_&_Vids” and “2002 Family Vacation.”

My dad had never mentioned it, but at some point he must have shared these files without my noticing. I could see that they’d also been shared with my brother’s account as well as a cousin’s. There were photos from graduation ceremonies and photos of long-forgotten trips: in one, I’m 12 years old, standing in a shallow pool at a water park in Newfoundland. In another, my brother is balancing on a seesaw as if it were a skateboard. There were even photos I had never seen. I pored over the images for hours, leaving no folder unclicked. My eyes grew tired from staring at the screen.

Up to that point, my dad’s social media, Facebook in particular, had acted like a time capsule. Photos and posts triggered memories, which allowed me to retrace my steps and regain some sanity. I had spoken to my dad in my head many times, begging for some kind of sign so I could know he was at peace. I didn’t have any prophetic dreams. No spirit floated to my window at twilight. But I could find plenty of ghosts online by conjuring them with Google searches. Although part of me must’ve realized this wasn’t healthy, the solace was worth it. As far as the internet was concerned, my father was still alive.
He breathed through photos, silly tweets, and the occasional email.

One of the last comments my dad made on Facebook was about me. “Our beautiful daughter. Twenty-three years old,” he wrote. It was a comment on a post from my mother, who had shared two photos of me with a caption wishing me a happy birthday. The first was a school portrait from elementary school. I wore a white t-shirt underneath a magenta spaghetti-strap dress, and my smile was missing a few teeth. The other photo was a recent snap of me at my aunt and uncle’s house, sitting in a wingback chair and obliging with a smile when someone, probably my mother, asked to take my picture. Here, my hair was pulled out of my face with a floral headband and my teeth were intact, straightened by two years of braces.

I said my dad wrote that comment, but it’s probably not entirely true. By that time, March 2016, my mom was managing most of my dad’s Facebook activity. He likely dictated the comment to her while she typed it and pressed enter.

Two months later, my dad died. He was 58.

My dad had ALS, a motor neuron disease that gradually debilitates muscle movement. His hands and arms were the first to go. They hung at his sides like dead weight, making his shoulders slump toward the ground. For a while, he would still try to answer the landline at home by knocking the receiver off the cradle and shouting into the phone from a standing position. “Dad, where is Mom?” I would ask, exasperated. Eventually, he accepted that he needed help—whether through voice-to-text technology or another person—to answer calls, send texts, and email.

My dad lived with ALS for two-and-a-half years before it killed him. During that time, social media was helpful. In the summer of 2014, the Ice Bucket Challenge took off and it became trendy to care about #ALS. On the internet, there was no way to escape it. Those videos made my dad laugh, and it felt as if people everywhere were supporting my family, knowingly or otherwise. According to the New York Times,

the Ice Bucket Challenge raised over $115 million (U.S.) for the ALS Association, which has helped scientists advance their research on the illness. Meanwhile, Canadians raised $17 million for the ALS Society of Canada. The society promoted a tagline and hashtag: “Every August until a cure.” However, the trend faded. It felt as if many people (even well-meaning, caring people) just forgot about ALS when the social media challenge, and phase, passed.

My mother is something of a Luddite and she’s generally against social media. The night my dad died, his brother made a Facebook post lamenting his passing—before my mom had even called all the extended family. This wasn’t a malicious act on my uncle’s part, but it meant that some relatives found out about my dad’s death through Facebook. My mom had to jump on the phone and make calls she wasn’t ready to make. She soon shared the news of my dad’s death on his own page along with a note asking his friends to keep an eye on the paper for an obituary and funeral details. It wasn’t long after that that my mom was asking my brother and me how to delete my dad’s Facebook page. I think it was just a few days after the funeral. I suggested she “memorialize” the page, but she said: “I just want it gone.” And so, it was. Just like my father. Gone.

I’m not sure how long after my dad’s funeral—maybe one week, maybe two—I discovered those archived photos in the cloud. They were comforting at first, but soon they weren’t enough. They emphasized the distance between then and now, alive and dead.

In an episode of Black Mirror called “Be Right Back,” a woman named Martha uses new technology to imitate the presence of her late husband. It evolves from text conversations to verbal phone conversations. Eventually, Martha orders a physical facsimile. Near the end of the episode, she yells at the vessel of artificial intelligence: “You are not enough of him!” Although that scenario is hyperbolic compared to mine, the character’s words express how I felt as I combed through those memories, reminding myself of everything my dad was. Reminding me of who I was when I still had a father.

I could get lost searching for every fingerprint my dad left on the internet, but it would never be satisfactory. I had to  pull back from that computer screen to find the arms of my partner again, and those of my friends, and my family. The arms of the living.

I still feel as if I’m looking for my dad and trying to maintain a relationship with him, but I believe I’m in a healthier place. Still, there are things I can’t part with. For some time after my dad’s death, his voice was still on the answering machine for my mom’s landline, saying, “You’ve reached Ron, Doreen, Chris and Becky.” I can relate. I’ve yet to change my cell phone’s contact name for that landline: “Mom and Dad.”

I just can’t delete “Dad.”

When you are diagnosed with a terminal illness there is a lot of talk about leaving a legacy. Some people write letters to their children. Some record videos. I have a pretty active Instagram account and have blogged for decades and hope my daughters will enjoy looking back on that. Some things older women living with the same disease as me worry about just aren’t on my radar. Some worry that they won’t be around to see their children get married or meet their grandchildren, for example. Those aren’t the sorts of legacies I’m most immediately concerned with.

When I was first diagnosed with Stage 4 breast cancer, one of my biggest fears—aside from the obvious one of dying—was that there were so many books I would miss out on reading to my three young girls. This was in 2016.

Fast forward to this year and my respite in stability has come to an end. The cancer has spread. It has always been in my ribs and back but now it has spread to my hips, legs, and possibly other places—at this point it is hard to keep up. I break ribs when I sneeze. I walk with a cane and need a wheelchair for any distance further than up the stairs to my bed. There is talk of hip replacement surgery. I am 43 years old. My daughters are 11, nine, and six years old. It is terrifying.

I was already a huge Harry Potter fan when I was diagnosed and so that was on the top of my list. That series got me through a dark time in my 20s and I have a special place in my heart for it. The winter of my diagnosis, while I was going through chemo for the first time, I started my oldest, who was turning eight, on her Harry Potter journey. I kept thinking, “just let me live long enough to read all the books to my girls.” My younger daughters were five and two at the time, so they were too young to start just yet.

From there, I made a list of books I wanted to read to my daughters. Reading together has always been our thing. I was never a mom who wanted to get down and play; I was always more interested in sitting us down and reading. My girls knew that I would usually drop anything if they asked me to read to them. I remember years ago asking my oldest daughter if she would still allow me to read to her even when she was reading chapter books on her own. She is in grade six now. And yes, I still read aloud to her when I get the chance. (However, my headstrong middle daughter has informed me that she is too old for me to read aloud to her.)

Back to these grandchildren I’m barely thinking about—maybe it is being part of a different generation than the older women around me, but I don’t really have the same worries. I had children because I really wanted to be a mom, not because I wanted to be a grandmother. Even if I was to be alive, those sorts of things would be out of my control. I would hate to wrongly pressure my girls into getting married or having children when those might not be things they ever want to do. When I had my first daughter I used to say I wanted to raise children we could enjoy the company of as adults. Now I want them to grow up and be happy despite the fact that they will have lost their mom at an early age.

The only legacy that feels right to leave them is a literary legacy. A shared love of books that we have read together. I like to think this would have happened even without a terminal diagnosis but with it the pressure is on to make every moment -—even moments spent reading—count.

Second on my list, after Harry Potter, was Anne of Green Gables (like a good Canadian). I tend to gravitate towards the classics and reading the entire Anne series is such an enjoyable way to learn about growing up as a smart, determined girl.

The Little House [on the Prairie] series came next, even though I hadn’t read it as a kid. I have since read the entire series through at least five times, and while there are definitely problematic parts to it, like the attitude towards Indigenous peoples, I like the discussions it creates in our family. For a while there a lot of conversations would start with: “What would Ma or Pa Ingles do?” (The answer is usually that they would just shut up and get their work done. It’s a little odd to compare our modern plant-based family to a pioneering family that existed 200 years ago but if Laura and Mary just ate what was put in front of them and cleaned the table afterwards without complaint then I’m going to use that as an example to get my kids to do the same.)

A Little Princess, A Wrinkle in Time, The Secret Garden, the The Dark is Rising series, the Green Knowe series, The Wolves of Willoughby Chase, Little Women, Pride and Prejudice, Jane Eyre… Most of these I have read to at least one of my daughters. Many more new-to-me and modern books have been added to the list, too: The Graveyard Book by Neil Gaiman, The Swallow: A Ghost Story by Charis Cotter, which have sparked discussions about ghosts and death. The All-of-a-Kind Family series which has taught us about the Jewish faith. One Crazy Summer by Rita Williams-Garcia, about the Civil Rights Movement in 1968 Oakland, California. There is a lot more representation in modern books about people who are not white middle-class Canadians, so even though I like to give my daughters a thorough education in the classics it’s good to not limit myself to them. We are all learning together.

My 11-year-old and I are currently reading through a number of historical mystery series: the Maisie Dobbs series by Jacqueline Winspear and the Lane Winslow mystery series by Iona Whishaw. It is really fun having someone in the family enjoying these more mature books and I’m so glad I have lived long enough to move away from children’s books and am still here to expand our literary experiences.

As the girls get older the things I want to share with them has changed. It isn’t limited to books anymore, but also music and movies. Each child is so different that what they want me to share and what makes sense to share with them is different too. For example, I started watching Downton Abbey with my 11-year-old earlier this year. I’m not a huge fan of TV but it’s been fun to watch it together and talk about class structure and the amazing costumes.

My nine-year-old daughter has a love for superheroes (after watching Wonder Woman she decided she wants to be an Amazon warrior when she grows up) and we spent the past couple of seasons watching the entire Marvel Avengers movie series.

My youngest is the one who would not have remembered me had I died when first diagnosed. She’s now six-and-a-half. To her I have passed down my love of musicals. She can spend the day complaining that the kids in her class are too loud—even with her noise-cancelling headphones—then come home and turn Hamilton: An American Musical on at full volume in her bedroom.

I’m grateful that they all share my love of Harry Potter. “Mom, when you are a grandma will you teach my kids about Harry Potter?” my middle girl recently asked me. I didn’t really answer. I said I would like to, but I think even she understands on some level that the chances of me being around then are pretty slim and I refuse to lie. I wish I could say yes and know that I will meet these mythical grandchildren someday but I can’t. It’s hard.

You think when you have children you have all this time with them, but it isn’t necessarily true. My fear is that all they are going to remember about me is how my illness coloured their childhood with the looming threat of death. They are terrified when I sneeze that I am going to break a bone and they have all but resigned themselves to the fact that I’m not much fun. Some days all I can do is get out of bed and feed them lunch, while other mothers are out attending Terry Fox runs and volunteering at the school. But books are something I know, and reading is something we can do together; even on my worst days we can snuggle up and read something. As Sirius Black says in Harry Potter and the Prisoner of Azkaban, “The ones who love us never really leave us. You can always find them, in here.” Sirius points to his heart when he is saying this but I believe that the ones who love us can also be found in the pages of a book long after they are gone. At least that is what I hope for my girls.

Illustration by Dale Nigel Goble

With around 269,000 deaths reported each year in Canada, the death biz is more invested in our mortality than ever. But this billion-dollar industry needs us more than we need it: big-ticket items and services, such as embalming, caskets and tombstones, are as superfluous as they are environmentally damaging. Green burials came to North America in the early 2000s, and Canada’s first urban green burial site opened in Saanich, B.C. in 2008. According to the Natural Burial Association, there are currently four certified natural burial sites in Canada, with several other cemeteries offering hybrid green burial services. Here’s what you need to know about going green to the grave.

THE ULTIMATE DETOX
Though numbers aren’t readily available in Canada, the Funeral Consumers Alliance estimates that over 20 million litres of toxic embalming fluid are used, and consequently deposited into the earth, every year in the U.S. Common embalming chemicals—such as formaldehyde, a known carcinogen—can leach into the ground, compromise the health of plants and animals, and contaminate our water supply. However, green burial practices prohibit the use of these concoctions in favour of natural decomposition. For open-casket viewings, the body can be preserved via refrigeration and the use of environmentally sensitive soaps, lotions and essential oils—a last spa treatment of sorts.

THINK OUTSIDE THE (VARNISHED) BOX
Caskets and casket liners containing metal, synthetic fabrics, varnish, and concrete take years to decompose and can leave a toxic residue behind. The greenest way to go down is enclosed in a shroud made of biodegradable fibres. Some people even have it dyed (with plant-based colours, of course) or embroidered with a favourite poem. Alternatively you can let mushies work their magic, by going six feet under in an Infinity Burial Suit. The head-to-toe garment is infused with fungi and bio-organisms that speed up your decomposition, allowing you to pass on your nutrients to the plants. A no-frills casket, made with locally sourced and sustainable wood, can be used as a supplement to a simple shroud. But forget the lustre finish and leave it untreated or oiled. Also, lose the swanky padded velvet lining, unless you’re Count Dracula or a very expensive guitar.

GRAVE MATTERS
Green burial sites discourage people from having individual tombstones to preserve the natural landscape of the grounds as much as possible. Unmarked graves and communal memorialization are standard. To mark the spot, instead of propping up a great slab of quarried marble, consider a discreet name plaque on a tree, a rock garden or smooth pebbles—or something sculptural, such as a sundial, a bird table or an art piece made from eco-friendly materials. If your last resting place is in a beautiful setting, your loved ones can just enjoy the ever-changing beauty of the seasons there—no concrete required.

PLANT LIFE AFTER DEATH
Green burials take their cues from nature and follow the principle that life and death are cyclical. As such, green burial sites are maintained with indigenous wildlife in mind. The grounds are managed organically, and cuttings of native plants and flowers are cultivated, to be reintegrated, each time the earth is disturbed. After all, just because you can’t make a comeback, doesn’t mean your burial plot doesn’t deserve the chance.

About a year after India died, my husband, Mark, visited the lab. At the time we were deep in grief and had decided to stay with a close friend. We couldn’t be in our own house. Whenever I walked through the door I was assaulted by images from the past— India trying to catch her breath as she had a seizure on the sofa; paramedics carrying India down the steep staircase on a stretcher; the empty space in India’s bedroom, by the window, where her hospital bed once stood.

After Mark returned from the lab, we sat on our friend’s porch to talk. He looked tired and sad so I was careful not to press him. All that remained of our only child were the cells my husband had viewed through a microscope. Finally, Mark lit a cigarette and said, “It was like looking at a city from space.”

I thought about that conversation on the porch, four years later as I was flying into Vancouver airport at night. From above, the flickering yellow lights of the city made me think of a video I’d seen of a nerve cell firing: the crowded centre was the nucleus; the suburbs branching from it, the dendrites; and the stretch of highway heading into the city was the slender nerve fibre known as the axon. For those who have not lost a child this might seem strange, but when my plane arrived in Vancouver I was hoping to catch a glimpse of her, if only in the shape of a metaphor.

Dr. Steffany Bennett, who runs the Neural Regeneration Laboratory where India’s cells are housed, told Mark she thought our daughter’s cells were beautiful. He thought so too, but he didn’t know if all cells were beautiful in the same way. India would have enjoyed their attentions. Like most teenage girls, she never tired of being admired.

To me, India’s cells are like starlight —a hint of the brightness that was my child. To say she was unique is an understatement. India died of Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy (SMA-PME), a disease that Dr. David Dyment—a clinical geneticist and Dr. Bennett’s collaborator—described as “ultra-rare.” While there are no formal numbers, the condition is seen in significantly fewer than one child in a million.

India’s symptoms began when she was 10 years old, with petit mal seizures that we were told she’d probably grow out of. By the time she was 15, she’d suffered grand mal seizures so ferocious that a veteran pediatric nurse who witnessed one told me later it was the worst day of her career. In the last two years of India’s life, her muscles became so weak that she developed a tremor in her voice and lost the ability to walk or use her arms. The talented teenager who’d once amused herself by drawing detailed manga characters while singing her favourite songs from Rent and Wicked could no longer hold a pencil or a tune.

James Vlahos can no longer sit across from his father, hold his hand or give him a hug. But he can ask him for advice when he’s feeling blue and let his children ask questions about his family’s life in Greece or listen to him sing “Me and My Shadow.”

When his father, John James Vlahos, was diagnosed with advanced lung cancer, at the age of 80, James began racing to record his life stories. For months, he sat across from his dad with an audio recorder, asking questions and recording long answers and jokes he’d heard “a hundred times.” In the end, he recorded 91,970 words.

What began as an oral-history project quickly evolved into a quest to give his dad virtual immortality. Vlahos, a journalist and author, had long been interested in Artificial Intelligence (AI) and voice applications. Shortly after his father’s cancer diagnosis, he learned the company PullString was releasing a software that would allow the public to create what are called conversational agents—like messenger chatbots. He wondered: What if he took the thousands of words and audio clips he’d collected and built a virtual replica—a Facebook Messenger chatbot—of his dad, with whom he could converse?

With his father’s and family’s blessings, Vlahos began building the Dadbot. His parents had never interacted with a chatbot before, but they liked the idea of being able to pass on his father’s stories in an interactive way.

“He had a way of sassing people in the friendliest kind of way, like if he thought you were getting a little too high on your horse, he had sayings like, ‘well, hot dribbling spit!’” Vlahos says. “I love hearing those words but I like when they come out at a surprising time. That is one thing I am proud of with the programming—that I got him.”

The Dadbot is designed to respond to questions driven by the people interacting with it, such as “What was your favourite class in college?” And every so often, the bot will decide to tell a story or joke.

Vlahos says building the Dadbot was part of his grieving process, and he still enjoys interacting with the bot.

“It’s comforting for me to talk to the Dadbot…It was neat to kind of step through his life, chapter by chapter, but then also to step into his mind, to a degree. How would he respond if somebody sort of teased him in this sort of situation?”

Digital avatars of the deceased are a rising trend, and go by different names, such as memorial bots or griefbots. When Vlahos detailed his experiences in a 2017 article for Wired magazine, he unintentionally positioned himself as a leader in this virtual immortality space.

“A lot of people wanted to talk about it,” he says. “One man, he was dying, and he wanted to create something for his kids to have, another woman had lost her son in an automobile accident and she wanted something to help remember him. It really resonated with people in a way that no project that I’ve been involved with before has.”

THE QUEST FOR IMMORTALITY IS nothing new but the ways we live and die have changed dramatically. In the 2018 version of the Vanier Institute report, Family Perspectives: Death and Dying in Canada, the first desire listed is “We want to live forever.” As the report points out, contemporary Canadian culture is death defying and death denying. We seek out anti-aging products and praise those who make it to the senior years with youthful lifestyles still blazing.

In Canada, sudden deaths are rare—the majority of Canadians get a heads-up that they, or their loved one, is dying. But in general, we are living longer than ever before. According to the 2016 census, the fastest-growing age group in Canada is actually “centenarians,” those aged 100 or older. The number of Canadians aged 85 and older now represents 2.2 percent of the total population (Japan, the country with the highest, is at just 4 percent).

Could this culmination of longer lives and deaths be making us think more about our personal legacies? Could it be driving our desire to achieve immortality in the most likely way we can—in the virtual world?

ANDREW LOUIS, A TORONTO computer scientist, has accumulated a lot of data. As a Millennial and tech entrepreneur, you’d expect his digital footprint to be large but it’s Louis’ personal archiving project, “Building a Memex,” that takes it to the next level.

For more than 15 years, Louis has programmed the devices in his life to track, record and store his digital footprint, resulting in a massive database that includes everything from what he’s typed and tweeted to the websites he’s browsed and what he’s eaten. He’s created a digital time capsule that can be searched, curated and, potentially, gifted to his children some day. In theory, someone could recreate a day in his life—or even recreate him.

“Pretty much every email or chat message I’ve ever sent is in there,” he says, joking that most of it “isn’t worth ever reading again.”

Last year, Louis decided to put his database to the test. He took the extensive MSN chat logs he’d saved as a teenager and resurrected his teenage self into a chatbot, using Recurrent Neural Networks (RNNs), a class of AI that creates vocabulary and speech recognition patterns. RNNs process all words in a text database, then develop a sequence or speech pattern based on those words.

This is no easy process. Chatbots require training to work and can require months of tweaking and training to create ever more complex and original sentences. The more times they run through a database of conversations, the more words can be stored for future retrieval. It’s also not a flawless process. As Louis points out, “All your typos and autocorrects will come back to haunt you.”

After 10 training sessions, a conversational structure emerged but it was only after 100 training sessions that his teenage replica started to sound more human and was able to understand and ask basic questions. Louis demonstrated the chatbot during a conference in New York City last year.

“Hello, are you there?” types the real Louis.

“Ya,” replies his teenage replica.

“Do you know how to use words?” asks the real Louis.

“Ya.”

After more training sessions, the common “ya” responses became a series of “lol” answers, even when inappropriate. Louis explains that without extensive training, bots choose the safest and easiest routes.

“There’s no general, structured knowledge that a bot can rely on,” he added. “Stuff like short-term memory is really difficult so if I say ‘I’m feeling sad’ and then continue on with the conversation, there’s no way for the bot to remember and work it into a future chat.”

Louis had high hopes going into the experiment but came away feeling decades away from realistic, human-like interaction with bots.

“Even if we can get a chatbot that has really good conversations, I don’t think there’s enough history yet that a single person has typed into a computer to really make a replica of a person that sounds like them and has all the general knowledge,” he says. “My dataset would be a best-case scenario and it’s minuscule compared to the amount of data you would probably need to do this properly.”

He also points out that who we are and how we speak isn’t always best captured in our correspondence.

“If a bot is just being trained on things I’ve said, there’s a whole set of experiences that have never made their way into text messages,” he explains. “At some point, you’re going to be really disappointed or frustrated by something the bot doesn’t remember.”

SCI-FI MOVIES AND LITERATURE have long inspired real-life tech innovation. A 2013 episode of the Netflix series Black Mirror, titled “Be Right Back,” is often referenced in articles and debates about digital immortality. When character Martha loses her partner Ash in an accident, her friend signs her up for a service to turn his digital life into a bot. She quickly becomes dependent on virtual Ash, alienating herself from the real people in her life. But as she trains the bot version and upgrades her account to phone conversations with his voice, then a life-sized robot replica of him that lives alongside her, things become too real—and unrealistic. The more he fails to remember important details about their life or react in the exact way Ash would have, the more he disappoints her.

“You’re just a few ripples of you. There’s no history to you,” she tells the bot. “You’re just a performance of stuff that he performed without thinking, and it’s not enough.”

Several start-ups are experimenting with memorial bots. One of the more well-known companies, Eternime, touts itself as “an artificial intelligence platform that collects your thoughts, stories and memories and stores them forever into an intelligent digital avatar that looks and talks like you.” It’s still in private beta but the company says more than 40,000 users have signed up for access when it’s available. The current version tracks daily personal habits, social media interactions and even physical movements to create an automated biography and generate an AI avatar.

But with bots still far from feeling emotions, and replicating personalities, are we limited to building griefbots that are more reminiscent of bodies without souls?

For Vlahos, the Dadbot fulfilled his needs. He hadn’t hoped for a virtual copy of his dad, but rather a storytelling device to help serve up his voice and stories. But Vlahos had a lifetime of knowledge about his dad to draw from. Companies are only as good as the data their users contribute.

“Imagine being a company, and they have never met the person and they are trying to create something that captures the essence—that’s hard to do,” Vlahos says. “Despite what you might see in the movies, there’s no just ‘oh, we’ll dump all the emails and text messages into a computer program and the computer magically recreates the persona—that tech is not actually here yet. And even if it were, it would be a very distorted and incomplete replica of a person. Think of what you put in text messages—there’s a lot of ‘I’ll be home at six, can you pick up some milk?’”

Toronto grief counsellor Lysa Toye says it is important to keep in mind people present different facets of themselves in online environments, and some of them aren’t necessarily meant to be public.

“Depending on where information is culled from, it can be really problematic,” she says. “We have different identities that we share with different people in our lives, strategically sometimes. There are reasons why my romantic or sexual relationship is a different kind of relationship then the relationship I have with my kids, which is different from the ones I have with my friends or my parents. I don’t know how you navigate those different kinds of identities and self-states in one glommed-together version of a person.”

Dr. Hossein Rahnama envisions a future where we are not trying to replicate entire beings, but rather memorializing and “borrowing” parts of people’s identities—specifically, their knowledge. Rahnama is a professor at Ryerson University in Toronto and CEO of Flybits, a company that uses AI to create micro-personalized experiences.

His Augmented Eternity project is making waves in the digital identity space. He has spent the past few years researching what he calls “swappable identities” at the Massachusetts Institute of Technology (MIT). Rahnama and his team of computer scientists are working on ways to use digital tools to democratize and socialize philanthropy.

Rahnama thinks the future of digital immortality is in allowing people to preserve and gift specific parts of their identities, like an entire body of professional knowledge, in the form of a digital avatar—or some other digital representation—that can be activated and accessed by communities. Similar to how chatbots create vocabulary and learn to interact by drawing on massive databases of previous text conversations, Augmented Eternity could mine someone’s body of knowledge and then create patterns and predict what advice they would give. Instead of paying a human big bucks for their expertise, someone could activate their digital avatar for free or a low cost. This could help people in sectors where knowledge is pattern-based, like medicine or law, ensure their professional legacies outlive them.

“When we started this project about three years ago, the first use cases we were hearing from our focus groups were very much around ‘I want to stay in touch with my loved ones, I want to leverage their expertise and I want to remember them,’” he says. “As we continued, one thing we noticed was there’s a philanthropist in every single individual. Everyone wants to leave a legacy behind, but based on the physical world and what we have seen so far, philanthropy is very limited for certain groups of people, based on their wealth or their ability.”

Rahnama believes society is tracking toward a more decentralized data economy, where our digital lives are not all stored by Google or Facebook, but housed in decentralized systems like the blockchain, allowing people to maintain more control over their digital footprints and decide how it’s used—or what it becomes—in life and the afterlife.

“[Millennials] are generating gigabytes of data on a very regular basis,” he says. “We said, what if we can allow them to own that data and turn that into an expertise? Let’s say after about 50 or 60 years worth of developing insights and gathering knowledge, they can now pass their expertise to a loved one or family member, and be able to kind of make their digital identity more sentient.”

But if we’re closer to being able to borrow someone’s identity and could turn their correspondence into a service or product, it raises the question: Can your identity or brainpower not just be borrowed, but stolen if in the wrong hands? Who owns your digital footprint when you die?

“That question is a very new question, even for the legal system. If you look at the terms and conditions that you find with Facebook, it’s very scary. They basically own all of your data, like whatever footprint you leave there is owned by them,” Rahnama says.

Ann Cavoukian is one of the world’s leading privacy experts and the former Information and Privacy Commissioner of Ontario. Cavoukian says she isn’t aware of any concrete ethical or legal guidelines around who can own and use your data after you die, and she has “been in this area a long time.”

“There’s a hope that the family members, etc. will honour the wishes of the individual, assuming that they had any wishes declared to their family relating to their personal information, but it’s really soft.”

And, she adds, “How do you ensure that the control you want or your expectations are met?”

For now, it seems the virtual afterlife remains as mysterious as the physical one.

In Canada, we generally don’t like to talk about death. Even our medical profession is reluctant. And rightly so: Doctors are committed to preserving life, and we wouldn’t want it otherwise. But death is a part of life, and assistance in dying is increasingly being recognized as a medical option for terminally ill patients.

It was only a few years ago—in February 2015—that the Supreme Court of Canada ruled it would no longer be a criminal offence in Canada for physicians to assist a person with ending their life, in certain circumstances. On June 17, 2016, the federal government followed up by passing legislation that details the circumstances in which someone may be deemed eligible.

Each province is responding differently. In Manitoba, specialized professionals, including a doctor, a social worker and a nurse, provide this service under the Winnipeg Health Authority. This centralized team, known as Medical Assistance in Dying (MAID), provides a referral source for medical practitioners who recognize assistance in dying is a medical service beyond the scope of their present practice or who won’t participate for reasons of conscience. My wife, Jean, was one of the first 100 patients in Manitoba to use the services of MAID to die with dignity.

In February of 2018, I had taken Jean to the emergency department of our local hospital in a wheelchair, as she was having trouble breathing and too weak to use her walker. The triage nurse took Jean’s vital signs, admitted her right away to a private room and hooked her up to oxygen. “The doctor will be here shortly,” she said. Jean and I held hands when she left. A young doctor appeared almost immediately. He smiled and introduced himself as he quickly examined Jean. “I want to consult with one of my colleagues,” he said. He returned with another doctor, who also examined Jean. The two physicians looked at one another knowingly. Then the first doctor began:

“You are in the process of dying. There are four options: You can keep on going from doctor’s office to doctor’s office and from hospital to hospital. But obviously, that’s not working. You can come into Comfort Care here—and we are arranging that now. Alternatively, you might be able to go home into Palliative Care, once we get your pain and heart medications balanced. It will take some trial and error with close supervision and observation on our part, both here in the hospital and at home, however. A fourth option is Medical Assistance in Dying.”

Now it was our turn to look at one another knowingly. Jean and I had talked about this eventuality for some months. We just couldn’t understand why none of the medical people we’d seen weren’t as open about it as we were. They were always offering hope.

Jean smiled and looked at the two doctors: “Don and I can relate to what you’re saying. We’re in our 80s and we know that we’re on the back nine of life. I’m close enough to the 18th hole that I can see the clubhouse. We’re content with that. So what you call Comfort Care makes sense. But I want to know more about Medical Assistance in Dying also.”

We’d known Jean’s medical prognosis was critical for almost 25 years, when a cardiologist had discovered Jean’s heart murmur was not caused by a childhood illness, but by a hole in her heart from birth. He offered that he could add another five years to her life by open heart surgery, but she felt she knew her own body. The operation to repair her heart, back then, would have been risky and, besides, her heart was managing to function, even though it was slightly enlarged from overwork. Instead Jean opted to see a heart specialist, who prescribed medications to support her heart in its day-to-day work. He agreed to monitor her progress on an ongoing basis. Jean was proud that she had already enjoyed life for an additional 25 years, rather than just the five predicted by the surgeon. But now the past was catching up with us. Her heart was failing.

To make things more complicated, Jean had developed hip problems and was in line for a hip replacement, then ultimately disqualified by the anesthesiologist. Over the years, her heart had become increasingly enlarged. “While the surgeon is doing his work, it’s my job to keep you alive on the table,” the anesthesiologist had said. “From your records, I can almost guarantee that you’ll have a stroke. I’m recommending that you try pain management instead.”

To manage Jean’s pain, we’d gone from one specialist’s office to another. My wife even tried medical marijuana. Nothing had a lasting effect, and her heart was getting weaker.

Now we had to deal with the inevitable. The second doctor left the room, while the first doctor remained with us to explain the options. He regarded what he was offering as a continuum service, depending on how far along Jean was in the process of dying and how well she responded to medical interventions along the way.

“For now, Comfort Care will give doctors the opportunity of monitoring Jean’s medications and the nurses the chance to build her up. She will also be referred to physiotherapy to get her walking again,” said the young doctor, who arranged to have Jean admitted into a private room in Comfort Care. We did not think that she would be coming home. This doctor also said he’d make a referral to the MAID team.

Our feelings were, of course, mixed, but Jean took advantage of her private room to invite family and friends and inform them. The room was filled with flowers, and I was able to be there from morning to night without the inconvenience of hospital hours.

Three of our granddaughters were already in Winnipeg, but two of our grandchildren flew in, one from British Columbia, with our youngest great granddaughter, and the other, from Houston, Texas. When our grandchildren were all assembled, Jean discussed the situation openly and distributed her jewellery to each of them, explaining the significance of her choice for each piece.

In Comfort Care, the doctors and nurses carefully administered Jean’s medication for her heart and for her pain, expertly balancing the two. And while in hospital, we received counselling as well and were referred to a volunteer from “Dignity Therapy.” The volunteer interviewed Jean about her life, and afterward we received a transcript of the interview. Jean was proud of it and distributed copies to family and friends. A local doctor had discovered that terminally ill patients had benefited from this process. As it happened, Jean rallied. She became strong enough to walk with her walker again and was overjoyed when the nurses said she could be released from the hospital into Palliative Care at home.

Palliative Care no longer has to happen in a hospital setting. Instead, professional assistance, medical equipment and training for the husband or wife of the patient can be provided at home. In our situation, a nurse visited two or three times a week to monitor Jean’s medications, and we had round-the-clock access to medical advice by phone. Jean would be transported back to hospital and admitted back into Comfort Care, in case of an emergency.

The services of the Palliative Care staff were focused on the whole person, tending to physical, mental, emotional and spiritual needs. Although on oxygen 24 hours a day and highly medicated, Jean was enthusiastic. She used her nine months of Palliative Care to write her own obituary, plan her celebration of life and visit daily with friends and family. Most important, Jean and I had time to reflect on our lives together and prepare ourselves. Jean would say: “We can’t be greedy. Don. We’ve had a wonderful life together. Our two boys are successful. We have five beautiful granddaughters and four wonderful great grandchildren. What more can we ask?”

Medical Assistance in Dying can be seen as the next step in the continuum of services for patients who are terminally ill. But it is very new—and very revolutionary. And because it’s so new, it’s not always known to doctors and patients, nor accepted. Fortunately, the young doctor had already referred us to the MAID team back at the time of Jean’s admission to Comfort Care.

We had three interviews with the MAID team, all within the first week of that hospital stay. Jean’s first interview was more or less an explanation of how the service would be made available to us, if Jean qualified. We asked that our two sons, Ramon and Anthony, be present for the second interview.

Not surprisingly, our sons came prepared to argue in favour of their mother living longer. But as it played out, the MAID team only confirmed what our sons had already suspected: Their mother was terminally ill and, even with her medication, in excruciating pain. The third interview happened only a few days later. Again, by our request, our sons were present when we learned Jean qualified for assisted dying. It was now up to her to choose where and when.

Jean spent three weeks in the hospital and nine months at home, before the time came to decide. All along, we had agreed Jean would take the lead, with my full support.

On December 18, 2017, two doctors visited at the request of the Palliative Care nurse. They said they could adjust Jean’s pain medication. They also said Jean’s heart was failing rapidly.

The next day, we talked at breakfast and Jean phoned the coordinator of the MAID team to meet with our sons and us the following day. We were all familiar with one another by now, and the doctor heading up the MAID team hugged Jean, when we got there, and said: “We were surprised and pleased, of course, that we hadn’t heard from you sooner.” Jean smiled and responded: “It’s time.”

We settled quickly on December 23, 2017, at 10 a.m., as the date and time when the procedure would be administered. Jean and I wanted it to happen in our apartment, which meant we didn’t have to book a special hospital room. Jean gave our sons a list of 15 people she wanted invited. A few days earlier, she had had a friend bring a selection of new clothing for the occasion. She chose a red top with long sleeves, black slacks, and red earrings to match the top.

On December 23, 2017, Jean sat in her favourite chair in our apartment. The 15 invited family members and friends were present, along with the MAID team. She urged everyone to reflect on the happy time we had all had together and to be grateful. She assured them she was at peace within herself and felt fulfilled. There were tears of course, but also much laughter and happiness, just as Jean had wanted. Jean called each person forward, to speak with them individually. I sat beside her and held her left hand. Our sons sat on the other side of her and held her right hand. The doctor who was to administer the drugs sat on a small stool behind Jean. Jean had asked our granddaughter, Jessica, to sing her favorite song, “Smile”—the Steven Tyler rendition. Jessica sang it a capella.

Finally, it was my turn for a few private moments with Jean. We had already spent the past few days preparing one another, but what happened in Jean’s final moments was completely spontaneous. We leaned toward each other to touch foreheads. Jean began the mantra we had written for ourselves some years earlier. It had carried us for the past few years, and we had repeated it together nightly:

“Look for beauty in all things,” Jean said.

“Expect love at all times,” I replied.

“Give from the heart,” she continued.

“And be grateful for life itself.” I said.

“And smile,” we said together.

Then we smiled at one another, even though by that point it was very hard. The doctor from MAID asked Jean again—by way of a legal requirement, as much as a part of the process—whether she still wanted the assistance in dying. Jean said “yes,” quietly but firmly. Then we said our last words. The MAID doctor waited and then introduced the drugs into the IV, hidden by the long sleeves of Jean’s top—a sedative, an anesthetic and a muscle relaxant. Jean fell asleep, then into a coma and then finally, her heart stopped.

It’s been a little more than a year since my wife chose to surround herself with family and loving friends at home and be medically assisted in the process of her dying, and less than a year since our family spoke of Jean with affection to the large crowd at her Celebration of Life at the First Unitarian Universalist Church of Winnipeg. Afterwards, there was the jolting shock of losing a loved one, followed by a period of calm. Then, we began talking among ourselves as a family.

This experience opened up the whole discussion around dying with dignity for us. Through Jean’s example, we realized it was alright to talk about death, because it is an inevitable part of life. We saw how important it was to understand end-of-life care options. And we saw how a person who has purpose and is intentional about life can be the same way in death. Jean chose dignity, not victimhood at the fate of a medical process that is often very linear and often misunderstood. In the timing and the details, she was guided by her own sense of peacefulness.

My eldest son, Ramon, has since said a better way to describe what the MAID team provided was a “liberation.” Those of us who accompanied Jean in her last months and on her last day agree that it’s much more fitting than the very clinical sounding Medical Assistance in Dying.

Over the past year, we all have been questioned by friends and acquaintances, even by medical professionals. How did we find out about MAID? How did we learn Jean qualified? How did we support her? How did we feel afterwards? Almost always, there is an awkwardness. There is a lack of experiential knowledge out of there, of course, and a constant search for the right words to communicate freely. That’s why, even though it’s still so raw after one year, I write to share our experiences more broadly.

As Canadians, we don’t like to talk about death. Yet Canada is one of the first countries to offer medical assistance in dying to patients who are terminally ill and suffering. People need to talk to understand it’s a new way of valuing life. The conversation is only just beginning.