16 August 2018

Through the Shadowlands by Julie Rehmeyer

Meg and I have this thing where we love to obsess over a topic and then read every book we can find on it. We have been obsessed with survivalist strategies, sperm whales, Mount Everest, and the Navy SEALs. And so I decided to give medical memoirs a go. I mean who doesn't love to be the most knowledgeable layperson about a bizarre illness? 

Chronic Fatigue Syndrome (CFS) is something I have been aware of, but didn't know much more about than the major symptom: exhaustion. I didn't pick this book up because I was fascinated by CFS, but because the cover alluded to an outdoorsy component that usually catches my eye. The full title of Julie Rehmeyer's book is Through the Shadowlands: A Science Writer's Odyssey Into An Illness Science Doesn't Understand. The cover is a photo of a tent out in the desert, and if you read the back it mentions that Rehmeyer spent weeks in the desert in an attempt to overcome her disease. 

The book does explore her time in the desert, but only for 20 pages. The remainder of the book (260 pages) deals with Rehmeyer's experience combatting CFS, trying to find a diagnosis, and treating her condition through mold avoidance. 

I will tell you right now that this book is dense. It took me longer than usual to get through and I was a little disappointed with it. The easy joke to make at this point is that Rehmeyer's account of her CFS left me feeling exhausted... but I'll refrain because the one message I took away from this book was how trivialized this population feels. 

I came across a 1990 Newsweek cover article on CFS calling the illness the 'yuppie flu.' I also read a CFS joke: A doctor diagnoses a patient with CFS. 'The good news is that it's not going to kill you,' he says. 'The bad news is that it's not going to kill you.'"

Julie Rehmeyer and her amazing dog Frances
Doctors do not have a strong understanding of CFS and there is no known cure. Patients are often told that it is a purely psychological phenomenon and that it is all in their head, or worse, that they are lazy and fear exercise. After reading about Rehmeyer's life, it's easy to see that it is a real disease, and that it can cripple you and your life. 

One thing I liked about the book is that Rehmeyer (as the title indicated) is trained in science writing. When the book starts she is doing graduate work at MIT in mathematics, and from there she does a quick graduate program which trained her in scientific writing. She makes a living by writing a math column for a science magazine, and pitching scientifically-based stories to magazines like Slate. This training really shows in her writing. You never feel like you don't know what she is talking about when she gets into the diagnosis of the disease. Everything is explained very carefully.

The downside was that my mysterious recovery reinforced the scent of illegitimacy about the illness, even in my own mind. That dichotomy struck me as peculiar: clearly, something had been going wrong inside my body, and medicine's failure to understand what that something was didn't change fundamental reality. But without a known explanation, the illness felt a bit like Schrodinger's cat: neither dead nor alive, neither physical nor psychological, and yet rich with possibility." 

Her education also works to her advantage because she is able to conduct her own studies. She is doubted by a lot of people in her life - both professionals and loved ones - and relies on her own understanding of science to ease her concerns about her illness. For instance, later in the book she conducts an experiment to test whether it really is mold that activates her illness or if she is just suffering from a placebo effect and blaming mold: 

I carried out the experiment I'd been pondering for months: I preformed a double-blind, placebo-controlled, randomized trial, the kind often called the 'gold standard of science.'"

She also goes on to analyze her data in a way that anyone who had to take a research methods class in university will remember: p-values and statistical significance.

The reason I picked the book up in the first place was because I thought it mostly dealt with her experience living in the desert. Rehmeyer goes to the desert because it helps with extreme mold avoidance. She learns on a forum that a lot of people with CFS are highly sensitive to mold and that going to the desert can help rid it from their body. So she spends two weeks there and notices a big difference when she gets back home. Eventually she learns how to detect when a building or item is contaminated with mold. And her ability to notice its presence helps her to avoid mold and avoid her crushing symptoms. 

The book also deals with some interesting relationship struggles. Rehmeyer is married to someone before the CFS sets in, and they end up divorcing because of his bipolar disorder (they remain on great terms throughout the book). In the beginning and middle stages of her CFS she meets another guy who she ends up dating seriously. Their relationship starts to weaken after Rehmeyer expresses how badly she wants children, and he tells her he just doesn't think it's possible given her disease. There is a passage that made me feel sick to my stomach, where they address the obstacle in their relationship:

William's voice, tight and halting, interrupted my internal conversation. 'Some of the possibilities we're facing,' he said, 'I'm not sure I can handle.' He was looking straight ahead at the road, showing me only his hawkish profile."

Their relationship finally ends on bad terms. A few years pass and Rehmeyer is terrified she will have to deal with this disease alone for the rest of her life. She finally makes a dating profile and meets this loyal, yellow-lab of a man, and they get married. He is so sweet and caring, and they essentially live happily-ever-after but without the children.

One thing I have to mention because it really pissed me off throughout the book was Rehmeyer's relationship with her mother. Early on in the book she explains that her mother died of cancer, and that she spent her entire childhood and young adulthood trying to "save" her "complicated" mother. At first you think that her mom was just a quirky, single mom, who happened to follow a bizarre religion (Christian Science). But you find out that her mom was actually physically and mentally abusive to Rehmeyer's other siblings.

Rehmeyer had a brother and sister growing up, but her mother chose to have them live in foster care when they were about 10 years old. The mom kept Julie (the author) saying she was her "favourite." You also learn that she used to beat the oldest son with a hairbrush, and once cruelly cut up his prized Star Wars t-shirt for apparently no reason.

It is VERY difficult to sympathize with her mother, and I never really got why Rehmeyer spent so many passages wishing her mom was around or remembering their time together.

The only thing calling my illness 'chronic fatigue syndrome' seemed to add was a stain of stigma, as if the name provided a window into my soul and displayed some moral failing within me."

So the book was good in that I learned a lot about CFS and I definitely feel a lot of compassion for people with it, but it was also incredibly dull. You sort of feel like you are reading the same thing over and over again. I wouldn't recommend it to anyone unless they suffered from CFS or they are close to someone who has it. 

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