Pieter Hintjens is an author and programmer best known as the founder of the ZeroMQ project. He was recently diagnosed with a rare and aggressive form of cancer. A Protocol for Dying is his latest and final blog post in which he reflects on how to interact with the terminally ill.
Last Men Standing. The stories of eight men who aren't supposed to be here. Diagnosed with HIV in the 1980's, when that was a death sentence, they are now living lives they never expected to have. [more inside]
Thoughts on open marriage and illness. Poet and essayist Melissa Broder, formerly anonymous creator of the Twitter account so sad today, writes about her relationship with her husband, their other partners, and his progressive chronic illness. This essay is excerpted from a larger collection, recently published.
Having a sick child is never easy. But if your child has to be sick, hope for something mechanical: a broken bone, a gash that needs stitches—something that can be physically mended. Failing that, wish for something commonplace. Chickenpox, a bladder infection, bronchitis. Doctors can manage these things with their eyes closed. If pushed, consider the merits of illnesses that are at least well understood—illnesses that can be definitively diagnosed and have generally agreed-upon courses of treatment. What you least want is something obscure, something not yet well characterized—and least of all, something both obscure and pertaining to the mind.
Writer Michael Rosenwald called on Steven Welty to identify a strange smell in his home. Welty knows a lot about how air moves, and he knows about the stuff in moving air that can make us sick and die. From Popular Science: [more inside]
"We’re launching Mental Health Week at BuzzFeed today because media can play a huge role — for good or for ill — in how people see themselves and understand their mental illnesses. We see it around the globe: a shift from seeing depression, anxiety, and other disorders as shameful personality flaws, and toward understanding them as the illnesses they are."
That Thing: A True Story Based on The Exorcist (Adam Sturtevant, Electric Literature)
The first thing you need to know about secure psychiatric facilities is that their bathrooms smell strongly of pee. What does it feel like to suffer from a mental illness? How can you explain that unique pain? I don't know how to explain it but this post hits a few points in a profound way.
A General Feeling of Disorder by Oliver Sacks [New York Review of Books]
“As an example of this, migraine is a sort of prototype illness, often very unpleasant but transient, and self-limiting; benign in the sense that it does not cause death or serious injury and that it is not associated with any tissue damage or trauma or infection; and occurring only as an often-hereditary disturbance of the nervous system. Migraine provides, in miniature, the essential features of being ill—of trouble inside the body—without actual illness.”
I am in my first month of nursing school. It is the early 70s and this is a three-year program, hospital-based, all practical training. It is my first day in my first ward...A remembrance, by English professor and disability studies scholar, Janet Lyon.
In the asylums, the garrison hospitals, the rogues’ hovels, and so on back through time, it is possible to see medicine moving toward this moment, when the malingerer ceases to be a monster and becomes a mirror to ourselves.
In a Slate Article by David Rosenberg, side-by-side images and descriptions illustrate the "dual lives" of those coping with mental illness.
Dr Google always thinks it's cancer, except when it's lupus. So how do you find reliable health information online? The (US) National Institute on Aging has some good rules of thumb, and the National Library of Medicine has a simple tutorial. Many of us, though, might prefer a list of general trustworthy resources. Here are some of my favorites, including some Australian and UK resources that American MeFites might not know. [more inside]
I was once CONVINCED I had Boerhaave syndrome, an extremely rare condition where your esophagus is ruptured and acid and air spill into your chest, because my chest tickled after a small bout of coughing. I spent two hours in the dark, unable to sleep, listening to my chest with a stethoscope, and UpToDate-ing (our version of WebMD) the various ways in which I'd be dead before morning. I ran to the Emergency Room and told them I needed a stat Gastrografin Esophogram, stat as in: yesterday. The attending took one look at me and said, “Congratulations, you're a cliché! Go Home.”
How not to say the wrong thing... A simple rule for dealing with other people's difficult life events.
"Postpartum depression isn’t always postpartum. It isn’t even always depression. A fast-growing body of research is changing the very definition of maternal mental illness, showing that it is more common and varied than previously thought." ‘Thinking of Ways to Harm Her’ and "After Baby, an Unraveling". [more inside]
“Hindus are, on average, richer and more educated than Muslims. But oddly, the child mortality rate for Hindus is much higher. All observable factors say Hindus should fare better, but they don't. Economists refer to this as the Muslim mortality puzzle. In a new study, researchers believe that they may have found a solution to the puzzle. And, surprisingly, the solution lies in a single factor – open defecation.” [more inside]
Healthtalkonline.org is a database of hundreds of interviews with patients afflicted by various conditions, ranging from ethnic experiences in mental health to Alzheimer's to experiences with being a clinical trial subject to cancer. It also includes a section on youth experiences with illness.
Blood Brother (2013) focuses on an American man who, after initially visiting as a tourist, moved to India to volunteer at the Arias Home of HOPE, a home for HIV-positive children in Acharapakkam, near Chennai. He eventually became an Indian citizen by marriage. [more inside]
This Video Will Hurt
A detailed explanation of a fascinating field of science and medicine by the always interesting C.G.P. Grey.[more inside]
Twenty cancer patients were asked to keep their eyes shut while they were given a makeover. A photographer then immortalized the moment they opened their eyes in front of a one-way mirror.
In 1986, Sandra Clarke was working as a staff nurse at Sacred Heart Medical Center in Eugene, OR when a dying man asked her to sit with him. She agreed but first needed to make her rounds and the man died alone in his room before she was able to return. Troubled, and feeling that she had failed a patient, she resolved to gather volunteers to stay with those who were alone and close to death. Ms. Clarke enlisted her entire hospital for a bedside vigil system to help ensure that patients would not be alone when they died. In 2001, Sacred Heart formalized the program as No One Dies Alone (NODA) and over the last decade, it has spread to hospitals across the US. "Susan Cox Is No Longer Here" offers us a glimpse into the NODA experience in Indianapolis. [more inside]
John Green: "Why Are Americans Health Care Costs So High?" A quick, handy little overview of common misconceptions on the US healthcare system. (SLYT)
A Life-Or-Death Situation. "As a bioethicist, Margaret "Peggy" Pabst Battin fought for the right of people to end their own lives. After her husband’s cycling accident, her field of study turned unbearably personal." Via.
"In the past three decades, the number of Americans who are on disability has skyrocketed. The rise has come even as medical advances have allowed many more people to remain on the job, and new laws have banned workplace discrimination against the disabled. Every month, 14 million people now get a disability check from the government." A multimedia story by Planet Money reporter Chana Joffe-Walt, also featured on This American Life this week.
Vini Reilly, of English post-punks The Durutti Column, had been through a rough couple of years. His friend and mentor (and Factory Records boss) Tony Wilson died, and then the already fragile guitarist suffered a series of strokes. Unable to play, and frustrated in his attempts to secure government assistance, he found himself having to sell his studio gear in order to make rent and pay off debts. Then his nephew decided to rally the fans.
291 diseases and injuries + 67 risk factors + 1,160 non-fatal complications = 650 million estimates of how we age, sicken, and die
As humans live longer, what ails us isn't necessarily what kills us: five data visualizations of how we age, sicken, and die. Causes of death by age, sex, region, and year. Heat map of leading causes and risks by region. Changes in leading causes and risks between 1990 and 2010. Healthy years lost to disability vs. life expectancy in 1990 and 2010. Uncertainties of causes and risks. From the team for the massive Institute for Health Metrics and Evaluation Global Burden of Diseases, Injuries, and Risk Factors Study 2010. [more inside]
The broth is just chicken and onions, with a confetti of vegetables added at the end where their flavor remains bright. The noodles are wide and winding... But, for me, the real triumph was giving the chicken parts and onion a saute... before adding water to make the soup. This deepened flavor base makes for magical soup, with a bronzed color, more robust flavor and significantly reduced prep time. ... With all of the blustery, cold days to go this winter, everyone... deserves to have a homemade, from-scratch chicken noodle soup that can be pulled off in just about an hour in their back pocket. [more inside]
20% of Anorexics Are Men. And that number is reportedly rising. "Diagnosis is hard. Finding treatment is even harder. Many residential centers don't admit men, out of a belief that treatment should be sex-specific." Article contains images and descriptions that may be disturbing to those with eating disorders. Single page version here.
"Experimental adaptation of an influenza H5 HA confers respiratory droplet transmission to a reassortant H5 HA/H1N1 virus in ferrets." After an extensive, months-long debate, one of two controversial papers showing ways the H5N1 "avian" influenza virus could potentially become transmissible in mammals with only 3 or 4 mutations was published in Nature today. The journal included an editorial on the merits and drawbacks of "publishing risky research" with regard to biosafety. The debate included an unprecedented recommendation by The US National Science Advisory Board for Biosecurity (NSABB) to block publication -- a decision they later reversed. (Via: 1, 2) Nature's special report has additional articles, including interviews with the teams behind both papers.
What happened to the girls in Le Roy? (NYTimes) 18 girls in Le Roy, New York have been suffering from tics and seizures. Neurologists believe the cause is conversion disorder (AKA hysteria) combined with mass psychogenic illness. Others have suggested environmental causes, or PANDAS. [more inside]
Patients at Seattle Children’s Hospital are finding messages written to them in huge letters when they look outside their windows. The Ironworkers Local 86 crew assembling the frame of the hospital's new seven-story expansion building next door have been spray-painting greetings to them on the steel beams. "The new building’s skeleton is alive" with more than 50 names: "greetings to Kitty, Colby, Kyle and Istvan. To Violet, Seth, Josh and Austin. To Rachel, Adam, Gillie-Jane and Christofer." Photo Gallery. Local television news segment. (Via)
"...we still can’t tell whether we are all about to die or whether we are being sold a bill of goods."
'The stories about epidemics that are told in the American press—their plots and tropes—date to the 1920's, when modern research science, science journalism, and science fiction were born.' This is the story of how the media back then (January, 1930) helped fuel fears about a parrot-fever pandemic, and the subsequent public backlash. (Via) [more inside]
Playboy: The Curse of Reality TV (url/ads may be NSFW)
The Brain on Trial. Advances in brain science are calling into question the volition behind many criminal acts. A leading neuroscientist describes how the foundations of our criminal-justice system are beginning to crumble, and proposes a new way forward for law and order.
"We may someday find that many types of bad behavior have a basic biological explanation—as has happened with schizophrenia, epilepsy, depression, and mania."[more inside]
A new study finds that re-usable grocery bags don't harbor sickening bacteria as much as previously found. Turns out, the previous study (June, 2010), which reported significant levels of sickness producing bacteria present in the bags they tested, was sponsored by the American Chemistry Council, an organization that represents the interests of the people who manufacture plastic bags. “A person eating an average bag of salad greens gets more exposure to these bacteria than if they had licked the insides of the dirtiest bag from this study,” says an expert.
After 45 years, $2.5 billion, and one legendary reunion, Jerry Lewis has announced that this year's Labor Day Telethon to benefit the Muscular Dystrophy Association will be his last. (previously) [more inside]
Embarassing Bodies, your one-stop clinical revulsion shop! Is it painful? And does it ooze? Pus and blood? Yep, that sounds nasty. [warning: NASTY] [more inside]
"There's confusion about where the line lies between being a bad person and being ill. Someone who's doing this, I'm afraid, could be both." The Guardian discusses 'Munchausen by Internet'. [more inside]
How 'The Fridge' lost his way. A profile of William 'The Refrigerator' Perry.
Diabetes is overwhelmingly the most common cause of male impotence in the developed world. Men and women are designed to move, and when we do not, our immobility reduces us in every respect. A long, enjoyably rambling piece about urbanization, faux survivalist sailors, self-sufficiency, and the problems caused by the creeping spread of the modern Western diet and lifestyle. Also, the difference between Canadian and Afghani guts.
New research hints that schizophrenia and other mental illness may be caused by "endogenous retroviruses" stored in our DNA and activated by common infections such as CMV, toxoplamosis, or the flu
Although some claim most of the oil is gone, and new tests for dispersants say seafood and people are safe, the reality is of course much different. However, an investigation by an Al Jazeera online correspondent finds toxic illnesses linked to BP oil dispersants along the Gulf coast. Trisha Springstead is a registered nurse of 36 years who lives and works in Brooksville, Florida. "What I'm seeing are toxified people who have been chemically poisoned," she said, "They have sore throats, respiratory problems, neurological problems, lesions, sores, and ulcers. These people have been poisoned and they are dying. Drugs aren’t going to help these people. They need to be detoxed."
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