My German conversation group was discussing health and somehow we got to chatting about the alcohol consumption guidelines in various countries. In Ireland a man can have 17 standard drinks (a standard drink is roughly half a pint) a week. In Canada we're warned that drinking 3 standard drinks per week can give us cancer and if we drink 7 drinks a week we're at much higher risk of heart disease and stroke. We're warned that drinking more than a single pint in one sitting puts us at risk of injury to ourselves and others. Perhaps they're still being too permissive about what counts as low risk, since the WHO says no amount of alcohol is safe. How have we arrived at so many different guidelines and why do they keep changing? Slate has the backstory.
I just booked a flight to Belgium, where, as a woman, I can safely consume 14 standard drinks a week according to their guidelines. Interestingly, public health agencies around the world are much more comfortable with my driving to Belgium than my having a beer when I get there. In Europe if I drive every day, it's fine to drive 9 hours at a time, but twice a week it's fine to drive for up to ten hours. In Ontario it's no problem as long as I don't drive more than 13 hours a day. That's based on laws for commercial drivers, as there are no public health guidelines about the risk of vehicular travel for non-professionals. No one bothers to point out that no amount of driving is free of the risk of death or injury.
I find the amount of time some people are expected to work without breaks or time to sleep quite alarming, especially when they’re medical professionals or operating heavy machinery. These are all regulated, of course. As someone who declines pretty quickly without sleep, I couldn’t function well under the terms of the regulations.
Everything in life is risky. There are pros and cons that can’t simply be divided and weighed. Having a dog is good for your health, because exercise is important, pets reduce stress, and it encourages you to socialize, but it's also linked with an increased risk of TBI. Everything we eat is dangerous, especially since we desperately need to reduce our salt intake and sugar is poison. There is no method of avoiding the pollutants in our water and air. The headlines scream at us to do this, to not do that, to optimize our lives and eliminate our risk.
A hallmark of western scientific medicine is a sense of control over the outcome. Jessica Clements and Kari Nixon write:
“As the theoretical availability of a risk-free life seemed increasingly possible (in this example, the hope of cures for disease seemed just around the corner), a funny thing happened: Society became generally more paranoid about risk because they felt it was avoidable. To put it another way, the more that perfect safety and health seemed within Western society’s grasp, the more people began to feel a pressure to maintain vigilance and avoid these risks. If disease were theoretically avoidable, it also seemed that everyone ought to do everything they could to avoid it. Thus, the moment disease was no longer seen as an inevitability, neoliberalism swooped in to make it seem like good, responsible people would obviously find ways to successfully avoid such risks.”
Clements and Nixon write about how, in the face of only correlational data on what may pose a risk during pregnancy, pregnant people are compelled to err on the side of caution. Without any compelling evidence, new rituals of risk avoidance are rigorously followed, lest any non-optimal outcome be blamed on the actions of the mother.
In The Spirit Catches You and You Fall Down, the Lee family disregards the doctor's aversion to exposing their epileptic daughter to any risk. They stop using the feeding tube. They stop giving her the medicine prescribed by her doctors. They allow the neighborhood children to play with her. They are only permitted to do this because the doctors have given up hope and believe she will die within days. Their daughter is brain dead. Instead, at home with her parents, she continues living.
Even in cases less dramatic than the Lee family’s, doctors frequently make decisions for us. They decide, in less than 15 minutes, what level of risk we are meant to accept. An article on using hormone replacement therapy to treat symptoms of menopause explains the ways women work around their doctors' reservations (based on outdated data) to access the treatment they want.
I recently went to the doctor for the first time in Portugal. I wanted to get a pap smear, a routine STI screening, and have my iron levels checked — just like I would have if I had gone to see my GP in Toronto. When I got a bill that was over ten times what I'd been told to expect to pay, I discovered that the doctor ordered seemingly every screening possible without explaining what or why, even though I’d specifically told them that my visit had been inspired by Ontario’s health department notifying me that it was time for a routine pap smear. I didn't realize that trying to get specific tests done was unleashing a fishing expedition to try to find something wrong with me.
The nurse I spoke to seemed perfectly fine with my declining to follow up on my test results, explaining that I’m not interested in pursuing anything that came up slightly out of the normal range. Perhaps it’s now noted in my chart that I’m noncompliant. Lesson learned: a private system is a private system, which means doing everything and anything as the default.
Ontario's public system looks at the mortality rate and survivorship rate in regions with different screening protocols in order to determine which to perform. As someone who prefers to avoid any medical interventions that aren't strictly necessary, this works well for me. Not everyone has the same tolerance for risk, though, and Ontario doesn't make it easy for people who would like the sort of screening that my private Portuguese doctor provided by default.
Meanwhile, medical errors may or may not be the third most common cause of death in the US. Regardless of the actual number, we all have our anecdotal experiences. I know how often I tell doctors I'm allergic to penicillin only to have them prescribe me penicillin thirty seconds later.
It's usually not so clear cut, though. In The Spirit Catches You and You Fall Down it's not clear who is responsible for what. Both the doctors and Lia's parents make errors that put her at risk. They both provide life saving care. There are major communication issues even without language barriers and cultural differences. Medical communication is no simple matter. Were we not told or did we simply not hear? Who has the right to decide?
The idea that we can eliminate risk is patently absurd if we think about it. One of my roommates in university was a microbiology major who horrified us with the incredible risk of everything we ate and everything we touched. Another had a mother who was an insurance actuary, prepared to tell us how risky everything we did was. Perhaps the most valuable lesson I got from that year of school was the knowledge that safety is an illusion. We drink tap water. We eat raspberries. We get in cars. We go for a run. We take vitamins. We sit on the porch drinking a glass of wine. We cannot pretend we're being safe.
Theoretically, if you buy every lottery ticket you're guaranteed to win. Unfortunately, I'm pretty sure it doesn't work like that for eliminating risk. We don't control how our lives turn out. Those actuarial tables speak to population level predictions, they don't predict how our individual lives will go. I’m glad to not be the one responsible for setting the guidelines.
George Saunders on the stories we tell to make sense of an unknowable world: "So, in every instant, a delusional gulf gets created between things as we think they are and things as they actually are. Off we go, mistaking the world we’ve made with our thoughts for the real world."
Giving up on predicting the future.
The reward for following the rules is often that the rules change.
Maybe I'm particularly bad at predicting the future because, as a queer person, my life automatically doesn't follow a common path. I appreciate Chris Beam's insights on how there's no road map for aging as a lesbian. I think my own pathlessness might go beyond that!
The New York Times asks us which version of ourselves should get to make decisions after we’ve been diagnosed with dementia (gift link):
“In the philosophical literature on dementia, scholars speak of a contest between the “then-self” before the disease and the “now-self” after it: between how a person with dementia seems to want to live and how she previously said she would have wanted to live.”
Denise Brown is hosting an online conversation about the article on May 31st.
On the unthinkably horrible decisions we are forced to make by modern medicine:
"When your dad is 82 and his cancer isn't found until it's already Stage 4, the conclusion is already forgone. All the choices you make in the interim are only there so that a year later you can sit up at night and think about how you probably made all the wrong ones."
The statistics around medical debt in the US are incredible:
"In the past five years, more than half of U.S. adults report they've gone into debt because of medical or dental bills, the KFF poll found.
A quarter of adults with health care debt owe more than $5,000. And about 1 in 5 with any amount of debt said they don't expect to ever pay it off."
On the loneliness of aging alone, with this gem:
"Wisdom may sometimes come in such a flash, but I have learned you must stick with it or it will leave you as clueless as you were before it lit."
I want this article on McMansions to be about accessibility:
"We need, quite literally, a revolution. And every revolution, lest we forget, is an architectural revolution. The Industrial Revolution brought about the dawn of modernism; the Russian Revolution initially saw the demise of bourgeois opulence in favor of Constructivism. The French revolutionaries looked upon the palace of Versailles with disgust, for it represented everything loathsome about monarchist French society: inequality, waste, and excessive filigree. So, too, under increasingly dire material conditions spurred by climate change and intersecting political catastrophes, will we look upon the McMansion. Maybe sooner than we think."
A rule for medical equipment that's accessible to large people that I think works for everyone:
“The patient is never the problem. Healthcare should be accessible to everyone and, if it’s not, then that’s a failure of healthcare, not a failure of the patient for existing in a body with needs that were completely predictable.”
We don't have to limit this to accessibility in health care!
If you're in the UK, the government is seeking input on how to build career pathways for care work.
There's now a statue of disability rights activist Stella Young. I've sidestepped lots of discussions on statues and only felt a little disappointed that I missed getting to see a statue of Ryerson decapitated and thrown into Lake Ontario because I wanted to finish running my errands, so I'm surprised at how moved I am by this.
Accepting that you'll never have the parent you long for.
As a person who is highly irritatable, I found this musing on irritation interesting.
An article on secrets hints at why keeping care work a secret can have such an impact on our wellbeing. This article from TED explains how and when to share a secret.