A Quokka Dreeds its Weird

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

A collection of essays, many autobiographical. If you’re interested in Amy Tan and writing, this is a must-read. If you dislike her fiction, I hesitate to recommend this; the style and most of the topics not focused on writing are quite similar. I do generally like her fiction and I am interested in writing, so I enjoyed this.

A number of the most powerful and poignant stories focus on her remarkably eventful and often traumatic life, the equally eventful and traumatic life of her mother, and their difficult relationship. (Difficult is putting it mildly: when Tan was a teenager, her mother, who was frequently suicidal, held a cleaver to Tan’s throat.) I hadn’t realized quite how autobiographical some of her fiction was until I read this book.

I also enjoyed most of the pieces on writing. Tan is quite funny about detailing the neurosis-beset life of the writer. In more serious matters, she has several essays about the expectations put on her as a Chinese-American writer (she dislikes the term “writer of color”), both from white people and from people of color. Her essays on the matter are heartfelt and worth reading even if you totally disagree with some or all of her opinions, which are too complex to summarize here.

The last essay, about a mysterious chronic illness she develops which causes a cascade of horrifying symptoms which eventually include hallucinations, is both a compelling medical detective story and a good conclusion to the book, though I was not fond of her attempt to pull in 9/11, which occurred at the same time. (Moral: if no one knows what’s wrong with you and you have bizarre symptoms, online research is the next best thing to Dr. House.)

Like most essay collections, there’s some randomness and a couple of pieces that could have been dropped with no harm to the book. But it’s a strong collection overall.