death – This Magazine https://this.org Progressive politics, ideas & culture Mon, 09 Mar 2020 16:10:03 +0000 en-US hourly 1 https://wordpress.org/?v=6.6.4 https://this.org/wp-content/uploads/2017/09/cropped-Screen-Shot-2017-08-31-at-12.28.11-PM-32x32.png death – This Magazine https://this.org 32 32 A greener goodbye https://this.org/2019/04/16/a-greener-goodbye/ Wed, 17 Apr 2019 00:35:10 +0000 https://this.org/?p=18693

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.

]]>
A Host of Cells https://this.org/2019/04/16/a-host-of-cells/ Wed, 17 Apr 2019 00:31:14 +0000 https://this.org/?p=18704

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.

By the end of India’s life she was having about 4,000 seizures a day. To get an answer to a simple question like “Which T-shirt do you want to wear?” could take up to 10 minutes. Finally the disease claimed her mind. In her last weeks she was assaulted by hallucinations so horrifying she screamed with fear. We tried everything to make them stop: medication, distractions, stories, jokes, songs— nothing worked.

Once the doctors had confirmed India’s diagnosis, I tried to visualize the odds of her having this deadly condition, using pennies, stars and grains of sand. I still couldn’t grasp that something like this could actually happen to my child.

SMA-PME is characterized by a non- functioning enzyme, acid ceramidase, that is unable to process a lipid molecule—a type of fat, found in the cell. The lipid molecule is called ceramide. When you have this disease, you can’t adequately break down ceramide, so it begins to accumulate in the cell. The nerve cell malfunctions, kind of like an irrigation system that has packed in, and that’s what causes the devastating symptoms.

There was no reason to suppose Mark or I carried the mutated genes that had to collide to trigger this disease. Think of it this way: the odds are probably higher that, during their lifetime, someone be struck by an asteroid five times. Yet it happened.

If we’d had children with other people we might never have known this painful fact about our own DNA—but then we’d never have met our glittering girl, who sets the navy sky alight.

Dr. Bennett’s lab is a sterile-looking space, located near a bunch of other academic rooms with no particularly distinguishing characteristics. It could easily be missed. When I asked Mark if he felt our daughter’s presence there, he said, “No, not at all.”

India’s cells are kept in what looks like a cupboard with a glass door. The day Mark visited, four or five people were working. Everyone treated him with respect, repeatedly telling him how grateful they were for India’s contribution. Without India, they said, their research would be impossible. This touched Mark greatly. In Dr. Bennett’s office, when he had looked into the microscope, he hadn’t expected that our daughters’ cells would be moving. Their vibrancy shocked him. Once he’d seen them, he wanted to leave—it was overwhelming to contemplate their connection to our child.

Mark and I hadn’t planned to donate any part of our daughter to science. It happened by circumstance. When India was 15, and we were still searching for answers, her neurologist asked that she be tested for Batten disease, a fatal condition with symptoms such as vision loss, seizures, and dementia. The test required taking some of India’s skin to grow her cells.

India was eager to take the test. She’d been in the hospital for 47 days after an onslaught of seizures, and she wanted to understand why. The specialist administering the test promised it wouldn’t hurt, but after five years of illness my daughter knew better than to trust the doctors.

The procedure left two bleeding punctures on India’s wrist. I told her it looked like she’d been bitten by a vampire. She liked that. Little did we know at the time that these punctures would lead to an immortality of sorts.

India was cleared of having Batten disease, but nine months later—thanks to a new DNA test at McGill University— she received her diagnosis of SMA-PME, a mysterious deadly disease that nobody seemed to know anything about. The leftover skin cells that had been extracted were then sent to Dr. Bennett, a leading authority on acid ceramidase. Her team began looking for ways to stall the progress of India’s disease, using these cells, which are known as fibroblasts.

After India’s death my husband and I agreed that the research should continue. I don’t think I grasped what that would mean until Mark visited the lab. After he told me about his visit, I became irrationally jealous of the people working with our daughter’s cells—jealous of their relationship with her. This was odd for me. When India was alive I’d encouraged her friendships with other people. Now she was dead, I was possessive. I envied the researchers their ability to read the nuances of her small existence. She was an integral part of their daily lives. I felt her absence in every aspect of mine. I told myself she now belonged more to them than me. I hated this with the passion of a new mother who discovers a stranger can quiet her fussing baby when she cannot.

“India’s cells are invaluable,” Dr. Dyment tells me. The goal of his and Dr. Bennett’s research is to find new treatments, so that other children won’t have to suffer as my daughter did. “Because the condition is so rare, it is incredibly difficult to obtain a skin sample,” says Dr. Dyment. “But after we started research into India’s cells, others heard about the work and they sent their children’s cells. We now have fibroblast cell lines from Greece, the United States, and Australia. This has become an important repository for SMA-PME research. Because of the rarity, we have been open with everyone about the research—the more people know, the better.”

The research has led to three potential treatment approaches. The first course of action is to perform a drug screen of known, available drugs, to see if they can reduce the amount of the destructive lipid. The second tactic is to simply add the absent enzyme—acid ceramidase—and see if it breaks down and reduces the Ceramide. The results so far are promising. India’s cells, along with other children’s, were used in the experiments. “Lastly,” Dr. Dyment says, “we are trying to replace the gene. We have started this, but we do not have the results yet. I am hoping for the spring [of 2019].”

Sometimes it seems my daughter straddles many worlds: science and arts, loss and joy, heaven and earth. Late at night, when I can’t sleep, I often find myself wondering how much I believe the cells are India—and if they aren’t her, why not? In the last years of India’s life she spent too much time alone—not just because of the rare nature of her illness but because her friends were out in the world, living their lives. Now, in death she has company: cells from children around the world who are like her. It pleases me to picture them as an open cluster of stars all formed from the same giant molecular cloud.

In my imagination, India’s cells are anthropomorphised. A whimsical combination of Calcifer, the fire demon in Howl’s Moving Castle, one of her favourite animated movies, and Tinkerbell from Disney’s original Peter Pan. At other times I picture her cells casting a soft glow in the dark lab after everyone has left. I fancy that this light zips through the clinical space, knocking over coffee cups and moving lab reports and people’s favourite pens.

If we wanted to stop the research on India’s cells the lab would respect our wishes. I’m not sure how to describe what they would then do to her cells: destroy, kill, finish them—these words don’t quite fit. This is not our plan, yet one day the research may wrap up nonetheless. At this juncture the researchers could save the cells for a set period of time, or with our consent, pass them along to another laboratory. To send our daughter’s cells to an unknown lab—one we have no connection with— feels rather like leaving my baby with a stranger. It bothers me that, in this scenario, her cells might live on years after my death. My instinct was always to protect her. I expect one of the hardest aspects of dying for any parent is leaving their children.

I’m sure India would like the idea of her cells living on in a laboratory. It would appeal to her love of comic books, manga and drama. To her, the lab would have been the stuff of superheroes. A place of alchemy. And in a death defying plot twist, she would be leaving a legacy of time travel and transformation.

I wish I found more comfort from India’s gift. It may prevent others from suffering. She would have liked that. She was kind. I do see her presence in the galaxy of possibilities within her cells, but I also see her absence in the blackness of the night sky. An inheritance of this sort is no consolation prize to a bereaved mother. It is simply evidence that nothing could be done to save her.

]]>
Will Our Data Lead Us To The Virtual Afterlife? https://this.org/2019/04/05/will-our-data-lead-us-to-the-virtual-afterlife/ Fri, 05 Apr 2019 20:05:03 +0000 https://this.org/?p=18674 Hayley Atwell as Martha in Black Mirror

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.

]]>
REVIEW: New book explores the dying art of eulogy https://this.org/2017/06/20/review-new-book-explores-the-dying-art-of-eulogy/ Tue, 20 Jun 2017 14:11:39 +0000 https://this.org/?p=16936 9781552453414_cover1_rb_modalcoverThe Last Word: Reviving the Dying Art of Eulogy
By Julia Cooper
Coach House Books, $14.95

Not knowing what to say when death arrives is precisely why readers should pick up Julia Cooper’s lifesaver of a book, The Last Word: Reviving the Dying Art of Eulogy. In this critical examination and analysis of the eulogy in its various forms—poetic, humorous, honorary, theoretical, fictional, online, heartfelt, and heartless—Cooper theorizes there are no right words or timelines to express one’s thoughts when it comes to death. By interspersing her own reflections of loss, the author bravely shows that these “final” goodbyes are just veiled beginnings of a long, difficult, and deeply personal dialogue with sorrow.

]]>