At The Australian, Andrew McMillen writes on palliative care as a critical service, and of the “power and the grace” required to care for those who are terminally ill and grant their final wish: to die peacefully, at home.
On an adjustable bed in a room towards the front of the house is Tony Huelsmann, a retired dancer, choreographer and dance instructor whose skills were once in high demand at schools throughout Melbourne and Brisbane. Sandra was one of his dance students. He was 30 when they met, seven years older than her, and it was love at first sight.
Born in Germany, Tony has spent much of his life in Australia. Now 80, he is dying from complications associated with several internal and external cancers, including a rash of angry red squamous cell carcinomas that have colonised the skin of his swollen upper thighs. These painful sores require daily dressings, performed by a personal care worker, while Karuna’s rotating roster of nurses help with symptom management, bed-baths, toileting and bedding changes, as well as emotional support for both husband and wife.
Since May, Tony’s world-spanning life has been confined more or less to these four walls while Sandra cares for his every need. At night, she snatches sleep where possible. It is their wish for Tony to die at home and they are both determined to see this wish fulfilled.
“A good palliative care nurse should be invisible,” she says, while navigating her hatchback between house visits. “You’re there to help them negotiate the process with friends and loved ones. The Dalai Lama says compassion should be selfless: it’s not about you, it’s about them. You’re a springboard. But it’s a real dance: you’re not a robot, and you go in with your whole self and heart open. We’re all emotionally involved, and the moment you’re not – when it becomes mechanical – I think you should quit.”
By midday Friday, Tony has lost more strength and lucidity. Swollen from the waist down, he has little control of his body. Today, for the first time, he is unable to use scissors to cut the tape that his wife uses to dress his sores. When Karuna nurse Kate Hooper visits his bedside, Tony clocks her prominent baby bump. A man near death meets a woman weeks away from giving birth. Pointing a shaky finger, he smiles and rasps to her, “How long to go?”
At Backchannel, Andrew McMillen writes on how one young Wikipedia admin fights back at trolls by raising the profile of notable women in science, one new Wikipedia page at a time.
She’d been receiving vicious emails for a decade. Sometimes she sought solace by commiserating with friends, or by stomping off to do something else, or occasionally — after the cruelest messages—by lying on her bed and crying. Temple-Wood became a frequent target of abuse merely because she is the rare female Wikipedia editor who has been active on the site for years. She manages to let much of the harassment slide off her. But many women eventually find the bullying to be too much, and leave the site.
…Temple-Wood had an idea. For every harassing email, death threat, or request for nude photos that she received, she resolved to create a Wikipedia biography on a notable woman scientist who was previously unknown to the free online encyclopedia. She thought of it as a giant “fuck you” to the anonymous idiots seeking to silence her.
Andrew McMillen writes on palliative care as a critical service, and of the “power and the grace” required to care for those who are terminally ill and grant their dying wish: to die peacefully, at home.
Andrew McMillen writes on how one young Wikipedia admin fights back at trolls by raising the profile of notable women in science, one new Wikipedia page at a time.
Writing for Backchannel, Andrew McMillen recently profiled a woman named Tracey Helton. Helton—a former heroin addict who now works as a public health advocate—has taken to Reddit to advocate harm reduction strategies among addicts and to distribute the overdose-reversing drug naloxone. Dubbed the “mother of r/opiates,” Helton’s program “illustrates the unexpected good that can emerge from darker corners of the internet.” But what makes the online forum so well-suited for outreach to addicts?
“There’s an anonymity involved with Reddit that I appreciate, because I know it’s really hard for people to come out if they’re involved with drugs,” she says. She has been open about her own past and identity because she wants her online companions to see her as living proof that recovery is possible. “I used my name so people could Google me and see I’m the same person,” she says. “I thought that, by being a semi-public figure willing to share my own experience, it would help people open up in a different way around their using.”
As her profile grew in this community of social outsiders and outcasts — many of whom feel stigmatized by the poor public perception of intravenous drug use — Tracey realized that her experience in running public health programs in San Francisco could offer another avenue of assistance on Reddit.“People were contacting me saying they had no access to naloxone, and I thought, ‘Well, that’s something I guess I could do.’” She mailed her first care package in August 2013. “I assumed a long time ago that somebody else would take over. I didn’t expect to be doing it for this long.”
My boyfriend and I share a love of cryptozoology and hidden places. For Valentine’s Day, he bought us matching “explorer” jackets with Nessie and Mothman patches affixed to the sleeves. We have standard hobbies, too—reading, writing, listening to music—but podcasts about Bigfoot and poring over Atlas Obscura is where things get a little weird. In this collection, you’ll meet folks who look at planes, at compasses, at building blocks and at each other (in full Civil War uniform, no less).
1. “Things Are Looking Up For Planespotters, the World’s Most Obsessive Aviation Geeks.” (Andrew McMillen, BuzzFeed, February 2015)
On Saturday mornings, when I was little, my dad played a computer game called Flight Simulator. He’d always loved planes, and flying them virtually was his way of taking to the skies without increasing his insurance payments. I thought of him immediately when I read Andrew McMillen’s reporting. Planespotters photograph, memorize, categorize and share the planes they see from their homes and the runways. Government agencies may be suspicious, but many airports welcome the free publicity, camaraderie and a fanaticism for flight. Read more…