rachelmanija: (Book Fix)
[personal profile] rachelmanija
Illness memoirs, like child abuse memoirs, have a number of pitfalls. They’re about depressing topics and so are hard not to depress the reader, they’re often by people who don’t write professionally and so are not well-written, and as the subject is inherently self-focused, they can very easily come across as self-absorbed. Even if they manage to avoid those problems, many are valuable works of self-help, self-revelation, community-building, comfort, and calls to action… but are not interesting to someone who mostly wants to read a good book.

This one is a good book.

Julie Rehmeyer, a mathematician and science writer, chronicles how chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) crept up on her until her entire life had vanished and she was frequently completely paralyzed. While she desperately tried to find a treatment, she instead encountered an array of quacks, snake oil salesmen, nice but useless therapists, nice but useless doctors, a patients’ community full of apparent crackpots, and medical literature claiming that it was a mental illness caused by, essentially, being lazy and whiny.

In desperation, Rehmeyer finally starts listening to some of the apparent crackpots… and when she applies her scientific training to their ideas, she finds that stripped of the bizarre terminology and excessive exclamation points, they sound surprisingly plausible. With her entire life at a dead end and nothing left to lose, she reluctantly decides to try a treatment which is both radical and distinctly woo-woo sounding.

And it works.

But unlike every other “How I cured/treated my illness by some weird method” memoir, the story doesn’t end there. Instead, she not only researches and theorizes about how and why it might have worked, she interviews scientists and doctors, and even arranges to do a double-blind experiment on herself to see if it’s a real cause of her symptoms or the placebo effect. I cannot applaud this too much. (I was unsurprised to find that every article I read on her book had a comment section claiming that her results were due to the placebo effect.)

Lots of people have suggested that I write about my own horrendous illness, crowd-sourced treatment, and jaw-dropping parade of asshole doctors who told me I was lying, a hypochondriac, or crazy. While you’re waiting… read this book instead. Though it’s not the same disease and she was treated WAY better by doctors, a lot of her experience with being beaten over the head with bad science and diagnoses based purely on sexism was very similar. As is much of her righteous rage. I am way more ragey and less accepting than she is. But still. It’s similar.

Overall, this is a well-written and honest memoir that shines a welcome light on a poorly-understood illness. Rehmeyer's perspective as a science writer provides for clarity, justifiable anger, and humor as she takes apart the morass of bad science, victim-blaming, and snake oil that surrounds chronic fatigue syndrome. It's informative without being dry, easy to read and hard to put down.

Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand

Hamilkitties!

Jul. 20th, 2017 03:09 pm
rachelmanija: (It was a monkey!)
[personal profile] rachelmanija


Curious Alex.





Erin, waiting for it.

truepenny: photo of the keyboard and raised lid of a 1911 Bluethner grand piano; the inside of the lid has inlaid brass letters reading BLUETHNER LEIPZIG (bluethner 1911)
[personal profile] truepenny
So this year, after a gap of twenty-five years, I started taking piano lessons again, focusing--because I'm an adult and get to choose for myself--on ragtime. There's a bunch of stuff around this decision that does not need to be explored at this juncture, because what I want to talk about is one of the biggest fucking paradigm shifts I've ever experienced.

I learned piano very much in the traditional you-learn-pieces-and-perform-them-at-recitals-and-they-get-progressively-harder mode (also traditional is the nice Lutheran lady teaching piano in her living room), and one of the reasons I started again was that I could work with somebody who went to UW-Madison for music--somebody, in other words, who's been exposed to the theoretical underpinnings not just of music, but of teaching.

Dude rocks my fucking world, I tell you what.

Partly, this is because I'm an adult and I've been exposed to the theoretical underpinnings of teaching (I always know when a teacher is using a particular pedagogical technique on me--which interestingly doesn't always make it less effective). I learn differently now and with a different understanding of what "learning" is. This is the place where Csikszentmihalyi has been extremely helpful to me, because I can recognize how a successful learning engagement works. ("Learning experience" would be a better phrase, but it already has connotations that are really kind of the opposite of what I mean.) And the pressure to learn pieces for recitals is mercifully off, which helps, too. But partly it's because this guy approaches music completely differently, bottom up instead of top down.

But the thing that has changed my relationship with my piano is something my teacher said (and I can't for the life of me remember what it was) that made me understand--quite literally for the first time in my life--that fingerings aren't arbitrary and they aren't just put in music so that teachers can judge whether students are obeying them or not. Here's where playing the piano is exactly like rock climbing:

The notes in the score are like the hand, finger, foot, and toe holds used to set a route in a climbing gym. You work the fingerings out yourself, the same way that a climber works out her own solution to how to get to the top of the wall using the holds available. And he said, "This music is for playing." A weirdass chord progression or run is like a difficult sequence in a route; it's a game, a puzzle that a musician who's been dead for 100 years set for all the pianists who came after him to solve. You work out the fingerings (4-5-3-5 WHAT THE ACTUAL FUCK) so that you don't hang yourself out to dry, the same way that a climber works out her holds so that when she has only her right hand free, the next hold isn't three feet to her left. When you make a mistake, you laugh and pick yourself back up and go up the wall again, because it isn't a pass/fail test. It's a game. You have a sense of glee that you share with the route setter about solving this incredibly intricate puzzle almost--in a weird way--together.

What that means is, (1) playing piano, which I have always loved, is now infused with a sense of fun that it truly has never had; (2) I know what I'm learning--not just "music" but the route up the wall, the game that underlies the performance; (3) when I'm fumbling through a new chunk of music, I know why I'm fumbling. It's not because I'm stupid or the music is stupid; it's because my brain is trying to process so much new information that it gets overwhelmed. That's why I miss easy chords and consistently play that damn C-sharp when the piece is written in G. Because THAT'S WHAT THE LEARNING PROCESS LOOKS LIKE.

But honest to god the idea of music as a game being played between composer and performer, and not a game like tennis, but a game like riddling--riddle set and riddle answered--is a seismic paradigm shift for me. Everything looks different now.
truepenny: artist's rendering of Sidneyia inexpectans (Default)
[personal profile] truepenny
Dear Senator Johnson:

Thank you for speaking out against Senator McConnell's methodology, which looks suspiciously more like tyranny than democracy. I hope that you will publicly refuse to vote to repeal the ACA with nothing lined up to take its place. McConnell's plan is catastrophic and could only be put forward by someone who neither knows nor cares anything about the healthcare needs of his constituents. I am strongly in favor of bipartisan reform for the ACA, and I hope that you will reach out to your Democratic colleagues to make that happen.

I know I will never persuade you that you are wrong about the effect of the free market, but, because I choose to believe that you are acting in good faith, I have to--in good faith--try again:

The problem with the free market is that it erodes ethics. Free-market capitalism says that ethics are irrelevant--if they're not actually a liability, making you less able to compete. This is why it is crucial that the government regulate corporations. The government doesn't need to worry about corporations making money. They'll take care of that part themselves. The government needs to ensure that they don't run roughshod over employees and consumers in the process. Deregulating everything and trusting to the free market to solve the problem is like opening all the cages and trusting the tigers to solve the food supply problem. Corporations, like tigers, will solve the problem for themselves. We need the government to make sure the problem is solved for everyone.

This is why we need government. This is why government should never be run on the corporate model. It is not a corporation, and if it is to succeed in providing justice for all citizens, it cannot be a corporation. It has to be the balance to the corporations, to keep their untrammeled free market competition from literally poisoning everything they touch. In the past fifty years, America has proved repeatedly that deregulation is not the answer. Deregulation only and always makes things worse, because--hey, wait for it--our country is not a corporation. Treating it like one merely destroys it.

This is why ethics are not something that can be discarded. Because without ethics, you get the Trump administration, and I have to tell you that, no matter how it looks from where you are, from where I am, all I see are tigers.



There's also email to Governor Walker about why isn't he one of the governors speaking out against ACA repeal?
rachelmanija: (Book Fix)
[personal profile] rachelmanija
I have obtained this from a free library (one of those little birdhouse things in my neighborhood.) It's a collection of short stories.

I love Stephen King but not his propensity for grossouts or body horror. In fact, I shied off his short stories after reading two Ultimate Body Horror Grossout stories, "The Cat From Hell" and that goddamn story about the surgeon stranded on a desert island UGH UGH UGH.

Given that, which of these should I read, and which should I avoid? I'm OK with scary and with violence that isn't revoltingly graphic.

Dolan's cadillac
The end of the whole mess
Suffer the little children
The night flier
Popsy
It grows on you
Chattery teeth
Dedication
The moving finger
Sneakers
You know they got a hell of a band
Home delivery
Rainy season
My pretty pony
Sorry, right number
The ten o'clock people
Crouch end
The house on Maple Street
The fifth quarter
The doctor's case
Umney's last chance
Head down
Brooklyn August.

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