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Life as a Photographer with ALS: ‘As Much Sky As You Can Get!’

Photo by Gregory "Slobirdr" Smith CC-BY-SA 2.0

At Pacific Standard, Justin Heckert profiles Anthony Carbajal, a 28-year-old photographer with an inherited form of amyotrophic lateral sclerosis (ALS). Before the disease slowly robs him of his ability to move, swallow, and breathe, Anthony is making the most of his time by inventing hacks to allow him to make photographs. “I like to live in the present,” he says, “About 90 percent of the time, I’m looking forward to the time I do have.”

The photographer was in the pale desert at dusk in early February, standing among hundreds of drooping Joshua trees, under the swiftly changing palate of the sky. He was trying to judge how the failing light would cast the picture he wanted of one tree in particular.

The photographer’s wife noticed he was getting cold, so she wrapped a blanket around his shoulders as he began to shiver in the dark. She rummaged in his bag and found the camera, a Sony A7, and unfolded the camera’s tripod on the dirt of the desert floor at Joshua Tree National Park. The photographer could no longer take pictures the way he used to; his arms dangled limply at his sides. He could not twist the lens to focus because of the atrophy in his hands, and didn’t have the strength to push his index finger into the shutter-release button when an image became perfect in his eye. He used to have several cameras, used to carry them on harnesses on his shoulders, used to be able to snap thousands of pictures in the span of a few hours.

The photographer, Anthony Carbajal, had just turned 28. He had a thick beard and short, tapered haircut, and such an optimistic disposition that it seemed his natural state, which could make him appear to have endless energy, though he was often tired. That morning his wife, Laarne Palec, also 28, helped him shower; helped him put on his pants and underwear; let him rest his arm on her shoulder in front of the bathroom mirror as she rolled deodorant under his armpits.

Laarne knelt on the desert floor, near the tripod beneath a Joshua tree. The trees were Anthony’s favorite metaphor; he found hope merely by staring at them, saw defiance in the way they survived.

“Joshua trees are very awkward,” he said. “Their limbs just hang there and don’t work anymore. They are very awkwardly beautiful.”

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Maybe We’ll Register Your Marriage After You Walk the Bomb-Sniffing Dog

Bride and groom are symbolically tied together during the traditional Hindu ceremony.

At Harper’s, Mansi Choksi tells the story of Neetu and Dawinder, a young couple from rural India who flee to a safe house run by the Love Commandos. The young couple wanted a love marriage — as opposed to an arranged marriage, which is still common in India — so they paid the Commandos to perform a marriage ceremony, register the union with the government, and protect them from physical harm at the hands of enraged family members incensed by a marriage against caste tradition. Love Commando services are expensive, and they also exact a different and predatory price: young couples are expected to run errands, walk the bomb-sniffing dog, cook, clean, and keep house for their would-be protectors while under their watch.

Across the Indian countryside, romantic relationships can easily become ensnared by taboos. Sometimes, the consequences are fatal. In 2007, the bodies of Manoj and Babli, lovers from the same village and the same gohtra—believed to be descendants of a common ancestor—were found in gunnysacks dumped in a canal not far from Kakheri. Babli’s family, which was wealthier, had forced her to drink pesticide; they strangled Manoj to death. With support from leaders in their village, Babli’s parents saw the murders as the only punishment commensurate with their humiliation. This is a common view: according to the latest count released to the public, 251 honor killings occurred in India in 2015.

“Hello, Love Commandos,” the voice on the line said.

“We have come,” Dawinder said.

“We have been waiting for you.”

The Love Commandos, on the other hand, advertises a one-time fee that covers the cost of a wedding ceremony and registration; couples are invited to stay as long as they need. Perhaps more important is Sachdev’s promise to protect them even when it compromises his safety. Armed men and disgraced relatives routinely come knocking, he said, and at least four khaps have issued bounties for his death. None have made good on their promise, but he and his colleagues have been beaten. “Look, we are madmen,” he explained. “We are not scared of dying.”

Neetu and Dawinder had been in the shelter for several weeks, but Sach­dev still had not taken their paperwork to the registrar. Whenever they asked, he assured them that he would get to it as soon as he could. Sometimes he would say there was too much traffic or that he was feeling ill. In the meantime, he would ask them for money to help cover the cost of his hospitality. As days progressed, according to Dawinder, they paid Sachdev fifty thousand rupees ($775) in unidentified general fees. Neetu would remind him that marriage registration cost only a few thousand rupees; Sach­dev would look hurt and say that he had treated them like his own children, but now she was bringing money between them.

While they waited, Dawinder and the other young men at the shelter were expected to run errands for Harsh Malhotra, the chief coordinator, a hulking man with a short temper. Whenever he rang a bell, they were to gather on the balcony to receive instructions. He’d have them go out to buy him a pack of cigarettes and a bottle of whiskey, play cricket with his nephew, mop, sweep, or walk Romeo. The women stayed inside to clean and cook.

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Bringing Home the Bodies: Deliverance From 27,000 Feet

FILE- In his May 26, 2016, file photo, the body of a climber who died during a Mount Everest expedition, is carried to hospital in Kathmandu, Nepal. Nearly 300 people have died on Mt. Everest in the century or so since climbers have been trying to reach the summit and at least 100 of them are still on the mountain. (AP Photo/Niranjan Shrestha, File)

In May 2016, four Bengali mountaineers attempted to achieve a lifelong dream: summiting Mount Everest. After an egregiously late start to their summit attempt, they were abandoned by their guides and left to die on the mountain. Only one survived. In an interactive article with harrowing video footage, John Branch reports on the ill-fated expedition and how a team of sherpas recovered the frozen bodies of Goutam Ghosh and Paresh Nath from 27,000 feet above sea level.

About 5,000 people have reached the 29,029-foot (8,848-meter) summit of Everest at least once since Tenzing Norgay and Edmund Hillary first did it in 1953. Nearly 300 people have died on the mountain in that period, according to the Himalayan Database, which tracks such things.

More than a year of exposure to the world’s wickedest elements had blackened and shriveled the man’s bare face and hands. His hydrant-yellow summit suit had dulled to the hue of a fallen leaf. The bottom of his boots pointed uphill. His frozen arms were bent at the elbows and splayed downhill over his head. It was as if the man sat down for a rest, fell backward and froze that way.

The man’s name was Goutam Ghosh, and the last time anyone saw him alive was on the evening of May 21, 2016, when it was obvious that he would become another fatality statistic, soon frozen and as inanimate as the boulders around him.

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Mimi Loves Phil: Life After Death by Overdose

(Photo by Bruce Glikas/FilmMagic)

At Vogue, Mimi O’Donnell reflects on her late husband Phillip Seymour Hoffman, his very public death via overdose, and overcoming loss as a family of four.

Twelve-step literature describes addiction as “cunning, baffling, and powerful.” It is all three. I hesitate to ascribe Phil’s relapse after two decades to any one thing, or even to a series of things, because the stressors—or, in the parlance, triggers—that preceded it didn’t cause him to start using again, any more than being a child of divorce did. Lots of people go through difficult life events. Only addicts start taking drugs to blunt the pain of them. And Phil was an addict, though at the time I didn’t fully understand that addiction is always lurking just below the surface, looking for a moment of weakness to come roaring back to life.

In the fall, Phil finally said, “I can’t do this anymore,” and he went back to rehab. We decided I would bring the kids, then five, seven, and ten, to see him for a family visit. We sat in a common room, and they asked him questions, which he answered with his usual honesty. He never came out and said, “I’m shooting up heroin,” but he told them enough so that they could get it, and they were just so happy to see him. It was hard when we left, because they all wanted to know why he couldn’t come home with us. But it felt healthy for us to deal with it together, as a family.

When Phil came back in November, he wanted so badly to stay sober, and for the next three months he did. But it was a struggle, heartbreaking to watch. For the first time I realized that his addiction was bigger than either of us. I bowed my head and thought, I can’t fix this. It was the moment that I let go. I told him, “I can’t monitor you all the time. I love you, I’m here for you, and I’ll always be here for you. But I can’t save you.”

The circumstances of Phil’s death were so public—people around the world knew he was dead an hour after I did—and every detail, from the days leading up to his overdose to his funeral, were, and remain, all over the Internet. And so I need to keep the rest of that awful time private. I had been expecting him to die since the day he started using again, but when it finally happened it hit me with brutal force. I wasn’t prepared. There was no sense of peace or relief, just ferocious pain and overwhelming loss. The most difficult—the impossible—thing was thinking, How do I tell my kids that their dad just died? What are the words?

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Restoring Neon City

Photo by Philip Kromer CC-BY-SA 2.0

At Curbed, Stephie Grob Plante profiles the artists of Austin, Texas who create new neon signs and restore old signs to their former, glowing glory.

Sharon and Greg list signs of theirs that are gone like they’re listing names of the long dead. They’ve been making signs in Austin for three decades, and many of the businesses they’ve served have shuttered. South Congress Mexican restaurant Manuel’s was Sharon’s first neon sign, however, and it’s alive and kicking. “Same neon, still working, and it’s over 30 years old.”

The process of restoring the State Theater’s 1935 marquee blade was particularly intensive, say the Keshishians. For starters, the original neon letters were uranium, which isn’t made anymore for safety reasons. Greg and his team removed all remnants of the old neon; completely gutted the inside of the porcelain enamel sign, including the electrical wiring and neon transformers; shoved out 79 years’ worth of pigeon poop; replaced the electrical components; made the majority of the neon from scratch; and polished the porcelain enamel.

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The Soundtrack to Healing on the Road to Recovery

(Photo by: Education Images/UIG via Getty Images)

After his son died of a heart condition at age 5, James G. Robinson planned a month-long road trip across America to help his family begin to heal. What they discovered was that despite all the amazing monuments and curiosities America has to offer, the best times were spent in the car as a family, enraptured by Harry Potter audio books, quintessential sing-along road trip songs, and a playlist curated for each state.

After all, part of this trip was figuring out how to be together — as a family of four (rather than five), each of us wrestling with grief in their own way.

I’d brought along a secret weapon: the complete, unabridged “Harry Potter,” read by Jim Dale, spanning 117 hours over 99 CDs.

It was probably the most useful item we brought on the entire trip. We got through the first four books, 50 hours in all (leaving another 67 for our next trip). Our older son had read them already, but as the miles flew by he was just as rapt as the rest of us. The only problem: if we stopped before a chapter ended, the boys would refuse to leave the car, begging us to turn it back on by crying “Hawwy Potttoooo!” in mock baby voices.

I’d also created some Spotify playlists to keep us company, including an assortment of energetic road songs: The Muppets’ “Moving Right Along,” Willie Nelson’s “On the Road Again,” Waylon Jennings’ “The Dukes of Hazzard Theme,” and Johnny Cash singing “I’ve Been Everywhere.” We played this every time we set out, and by the end of the trip, we were all singing it together; yelling extra loud each time Cash mentioned a place we’d visited, too.

To ease the pain, we decided to collect stones wherever we went, inscribing each with the place and date and setting it aside in a small canvas bag. When our son’s tombstone was finally set, we’d bring the bag to the cemetery and stack them above his grave, according to Jewish tradition.

The ritual of finding stones helped us evoke his memory and acknowledge his absence. By the time we returned home, we’d collected 12 pounds of assorted rocks and pebbles, as well as a crab shell and broken sand dollar that the boys found on the beach in South Carolina.

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The Nearly Impossible Journey of a Long-Term Survivor

An Inuit youth pulls an infant on a sled along a snow-covered street in Inuvik in Canada’'s Northwest Territories on April 3, 1974. The round building looming in the background is a Catholic church. (AP Photo)

On June 24, 1972, three boys decided to leave their residential school in Canada’s Northwest Territories and walk from Inuvik to Tuktoyaktuk (“Tuk”), in a bid to avoid punishment for stealing a pack of cigarettes from their dorm supervisor. Without a highway connecting Inuvik to Tuk, the boys had no idea they were undertaking an impossible journey of 90 miles over boggy tundra. At Granta, Nadim Roberts tells the story of Dennis, Jack, and Bernard — just one example of the horrific toll residential schools have exacted on Inuits, the Inuit community, and their traditional ways of life.

From the pond, the boys walked in the direction of the highest hill, where they could see power lines unspooling to the north-east. The 69,000-volt transmission lines had been strung the previous month. ‘These lines go all the way to Tuk,’ Dennis told his friends. He and Bernard were from Tuktoyaktuk, on the shores of the Arctic Ocean. If they followed the power lines, they’d be home in a few hours, Dennis said. School would be over soon anyway, and if they left now, they could avoid getting in trouble.

Residential schools had existed in Canada since 1831, but it wasn’t until the 1950s that a significant number of them operated in the north. These government-sponsored religious schools were established to assimilate Indigenous children into Euro-Canadian culture by ripping them away from their families and communities. When Western European colonization and evangelization finally arrived in the Arctic, what had been a relatively unscathed Inuit culture began to change rapidly. Bernard’s biological parents had been part of the first generation of Inuit that passed through these schools. It was in such an institution that they first met and fell in love.

Before 1955, fewer than 15 per cent of school-aged Inuit were enrolled in residential schools. Most children still lived on the land with their families, learning traditional skills and knowledge. Rather than teaching students how to hunt, skin game, and build igloos and kayaks, residential schools taught a curriculum used for white children in Alberta.

By 1964, more than 75 per cent of Inuit children attended residential schools. Their values, language and customs were supplanted overnight by a culture that saw itself as benevolent and superior, and saw the Inuit as primitive beings in need of sophistication. The young Inuit who went through the residential school system experienced an assault on their traditional identities that had shattering consequences: they are often referred to as the ‘lost generation’.

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Second Life: A World that, for Some, Allows Full Participation

Photo by Alicia Chenaux (CC-BY-SA 2.0)

At The Atlantic, Leslie Jamison profiles several long-term, hard-core users of the immersive, virtual reality platform Second Life. In the game, you create a fantasy alter-ego and your “selective self” resides in a virtual world that allows you to leave behind everything you don’t like about yourself and your real life. Weary of your teal-blue lozenge pool? Install another.

Some critics of Second Life easily dismiss it as escapism. Despite the fact that Jamison herself struggled to embrace the virtual land of imperfect perfection, she discovered that for some, it can offer a kind of refuge from the hassles and frustrations of everyday life — an oasis of belonging regardless or age, status, or whether or not you have a physical disability or a mental illness. As she notes, “Second Life recognizes the ways that we often feel more plural and less coherent than the world allows us to be.”

Gidge Uriza lives in an elegant wooden house with large glass windows overlooking a glittering creek, fringed by weeping willows and meadows twinkling with fireflies. She keeps buying new swimming pools because she keeps falling in love with different ones. The current specimen is a teal lozenge with a waterfall cascading from its archway of stones. Gidge spends her days lounging in a swimsuit on her poolside patio, or else tucked under a lacy comforter, wearing nothing but a bra and bathrobe, with a chocolate-glazed donut perched on the pile of books beside her. “Good morning girls,” she writes on her blog one day. “I’m slow moving, trying to get out of bed this morning, but when I’m surrounded by my pretty pink bed it’s difficult to get out and away like I should.”

In another life, the one most people would call “real,” Gidge Uriza is Bridgette McNeal, an Atlanta mother who works eight-hour days at a call center and is raising a 14-year-old son, a 7-year-old daughter, and severely autistic twins, now 13. Her days are full of the selflessness and endless mundanity of raising children with special needs: giving her twins baths after they have soiled themselves (they still wear diapers, and most likely always will), baking applesauce bread with one to calm him down after a tantrum, asking the other to stop playing “the Barney theme song slowed down to sound like some demonic dirge.” One day, she takes all four kids to a nature center for an idyllic afternoon that gets interrupted by the reality of changing an adolescent’s diaper in a musty bathroom.

I heard about a veteran with PTSD who gave biweekly Italian cooking classes in an open-air gazebo, and I visited an online version of Yosemite created by a woman who had joined Second Life in the wake of several severe depressive episodes and hospitalizations. She uses an avatar named Jadyn Firehawk and spends up to 12 hours a day on Second Life, many of them devoted to refining her bespoke wonderland—full of waterfalls, sequoias, and horses named after important people in John Muir’s life—grateful that Second Life doesn’t ask her to inhabit an identity entirely contoured by her illness, unlike internet chat rooms focused on bipolar disorder that are all about being sick. “I live a well-rounded life on SL,” she told me. “It feeds all my other selves.”

Some people call Second Life escapist, and often its residents argue against that. But for me, the question isn’t whether or not Second Life involves escape. The more important point is that the impulse to escape our lives is universal, and hardly worth vilifying. Inhabiting any life always involves reckoning with the urge to abandon it—through daydreaming; through storytelling; through the ecstasies of art and music, or hard drugs, or adultery, or a smartphone screen. These forms of “leaving” aren’t the opposite of authentic presence. They are simply one of its symptoms—the way love contains conflict, intimacy contains distance, and faith contains doubt.

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A Lonely Death: The Extreme Isolation of Japan’s Elderly

Takashimadaira housing complex in Tokyo. (AP Photo/Katsumi Kasahara)

With a population of 127 million, Japan has the most rapidly aging society on the planet. As Norimitsu Onishi reports at The New York Times, elderly individuals often live in extreme isolation, albeit only a few feet from neighbors on all sides, “trapped in a demographic crucible of increasing age and declining births.” Their fate? A “lonely death” where their body may remain undiscovered in their small government apartment for days (or even years) because family is distant both physically and emotionally, and friends have all long since passed away.

The first time it happened, or at least the first time it drew national attention, the corpse of a 69-year-old man living near Mrs. Ito had been lying on the floor for three years, without anyone noticing his absence. His monthly rent and utilities had been withdrawn automatically from his bank account. Finally, after his savings were depleted in 2000, the authorities came to the apartment and found his skeleton near the kitchen, its flesh picked clean by maggots and beetles, just a few feet away from his next-door neighbors.

Mrs. Ito, age 91, lives alone in a small government apartment built back in the 1960s for up-and-coming salary men.

She had been lonely every day for the past quarter of a century, she said, ever since her daughter and husband had died of cancer, three months apart. Mrs. Ito still had a stepdaughter, but they had grown apart over the decades, exchanging New Year’s cards or occasional greetings on holidays.

So Mrs. Ito asked a neighbor in the opposite building for a favor. Could she, once a day, look across the greenery separating their apartments and gaze up at Mrs. Ito’s window?

Every evening around 6 p.m., before retiring for the night, Mrs. Ito closed the paper screen in the window. Then in the morning, after her alarm woke her at 5:40 a.m., she slid the screen back open.

“If it’s closed,” Mrs. Ito told her neighbor, “it means I’ve died.”

Mrs. Ito felt reassured when the neighbor agreed, so she began sending the woman gifts of pears every summer to occasionally glance her way.

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Teju Cole Delights in Sentence Fragments

(Photo by Ulf Andersen/Getty Images)

At The Millions, Steve Paulson interviews Teju Cole about why he left Twitter, his photographic inspirations, how he delights in the beauty of sentence fragments, and his meditative approach to combining text and photography in his book, Blind Spot.

SP: You also seem to be fascinated by memory.

TC: Memory is often a layer. A lot of my language can probably be located somewhere around 1915, between Virginia Woolf and James Joyce. I have a lot of faith in what can be achieved with a well-polished English sentence. Not that I try to make the language old- fashioned, but I like a clean sentence. But a lot of the reading I do is fragmented. One of my favorite authors is Michael Ondaatje and he uses sentence fragments a great deal.

SP: Why do you like fragmentary sentences?

TC: Because they can evoke the present in a very powerful way.

SP: So you don’t want a narrative that’s too self-contained and wraps everything up?

TC: But sometimes I do. Look at James Joyce’s short story “The Dead.” Excellent sentences and they’re somewhat formal, even though the narrative is not formal. You get your epiphany at the end and you have these very powerful feelings. But if you read Running in the Family or The English Patient by Michael Ondaatje, it’s jazzier. Those sentences are all over the place. Or if you read Anne Carson, who is a modern master of the fragment. A fragment is very often about mastery as well. It’s about saying I need just this much to convey. That can just be a delight. For me it’s about recognizing that great art comes in all kinds of forms. In Blind Spot I actually use more fragments than I’ve tended to use you, though I also still use a lot of well-polished sentences.

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