Tag Archives: autoimmune diseases

Smile: The Story of a Face by Sarah Ruhl

“Ten years ago, my smile walked off my face, and wandered out in the world. This is the story of my asking it to come back.”

Sarah Ruhl is a lauded New York City playwright (Eurydice et al.). These warm and beautifully observed autobiographical essays stem from the birth of her twins and the slow-burning medical crises that followed. Shortly after the delivery, she developed Bell’s palsy, a partial paralysis of the face that usually resolves itself within six months but in rare cases doesn’t go away, and later discovered that she had celiac disease and Hashimoto’s disease, two autoimmune disorders. Having a lopsided face, grimacing and squinting when she tried to show expression on her paralyzed side – she knew this was a minor problem in the grand scheme of things, yet it provoked thorny questions about to what extent the body equates to our identity:

Can one experience joy when one cannot express joy on one’s face? Does the smile itself create the happiness? Or does happiness create the smile?

As (pretty much) always, I prefer the U.S. cover.

Women are accustomed to men cajoling them into a smile, but now she couldn’t comply even had she wanted to. Ruhl looks into the psychology and neurology of facial expressions, such as the Duchenne smile, but keeps coming back to her own experience: marriage to Tony, a child psychiatrist; mothering Anna and twins William and Hope; teaching and writing and putting on plays; and seeking alternative as well as traditional treatments (acupuncture and Buddhist meditation versus physical therapy; she rejected Botox and experimental surgery) for the Bell’s palsy. By the end of the book she’s achieved about a 70% recovery, but it did take a decade. “A woman slowly gets better. What kind of story is that?” she wryly asks. The answer is: a realistic one. We’re all too cynical these days to believe in miracle cures. But a story of graceful persistence, of setbacks alternating with advances? That’s relatable.

The playwright’s skills are abundantly evident here: strong dialogue and scenes; a clear sense of time, such that flashbacks to earlier life, including childhood, are interlaced naturally; a mixture of exposition and forceful one-liners. She is also brave to include lots of black-and-white family photographs that illustrate the before and after. While reading I often thought of Lucy Grealy’s Autobiography of a Face and Terri Tate’s A Crooked Smile, which are both about life with facial deformity after cancer surgery. I’d also recommend this to readers of Flesh & Blood by N. West Moss, one of my 2021 favourites, and Anne Lamott’s essays on facing everyday life with wit and spiritual wisdom.

More lines I loved:

imperfection is a portal. Whereas perfection and symmetry create distance. Our culture values perfect pictures of ourselves, mirage, over and above authentic connection. But we meet one another through the imperfect particular of our bodies.

Lucky the laugh lines and the smile lines especially: they signify mobility, duration, and joy.

My rating:

 

With thanks to Bodley Head for the free copy for review.

Natural Causes by Barbara Ehrenreich & Human Errors by Nathan Lents

 

Two recent books about our flawed bodies and the ultimate pointlessness of trying to control them…

 

Natural Causes: Life, Death and the Illusion of Control by Barbara Ehrenreich

A decade ago, Barbara Ehrenreich discovered a startling paradox through a Scientific American article: the immune system assists the growth and spread of tumors, including in breast cancer, which she had in 2000. It was an epiphany for her, confirming that no matter how hard we try with diet, exercise and early diagnosis, there’s only so much we can do to preserve our health; “not everything is potentially within our control, not even our own bodies and minds.” I love Ehrenreich’s Smile or Die (alternate title: Bright-Sided), which is what I call an anti-self-help book refuting the supposed health benefits of positive thinking. In that book I felt like her skeptical approach was fully warranted, and I could sympathize with her frustration – nay, outrage – when people tried to suggest she’d attracted her cancer and limited her chances of survival through her pessimism.

However, Natural Causes is so relentlessly negative and so selective in the evidence it provides that, even though it’s sure to be considered for next year’s Wellcome Book Prize longlist, I would be unlikely to recommend it. In the first chapter, “Midlife Revolt,” which has been excerpted at Literary Hub and is worth reading, Ehrenreich writes of her decision to give up routine medical screening after a false positive mammogram caused undue stress. She decided once she passed 70 she was old enough to die without accepting a “medicalized life.” Moreover, she believes there’s an epidemic of “overdiagnosis,” especially in the USA, where there can be a profit motive behind testing. (This is certainly not the case in the UK, where the NHS doesn’t pester me about getting cervical smear tests to line any pockets; no, it’s about saving taxpayers money by catching cancer early and thus minimizing treatment costs.)

I love the U.S. cover. (Note the different subtitle.)

Ehrenreich goes on to argue that many medical procedures are simply rituals to establish patient trust, that cancer screening is invasive and ineffective, that there is little evidence that meditation does any good, and that fitness has become a collective obsession that probably doesn’t help us live any longer. It’s uncomfortable to hear her dismiss early detection techniques as worthless; no one whose doctor found cancer in the early stages would agree. The author also seems unwilling to confront her own personal prejudices (e.g. against yoga).

Although she uses plenty of statistics to back up her points, these usually come from newspapers and websites rather than peer-reviewed journals; only in two chapters about how macrophages ‘betray’ the body by abetting cancer does she consult the scientific literature, in keeping with her PhD in cellular immunology. Her most bizarre example of how our bodies aren’t evolutionarily fit for purpose is copious menstruation. Overall, the book is a strange mixture of hard science, social science, and, in later chapters, philosophy, as Ehrenreich asks about the nature of the self and the soul and what survives of us after death. As usual, her work is very readable, but this doesn’t match up to many other mind/body books I’ve read.

Favorite lines:

“The only cure for bad science is more science, which has to include both statistical analysis and some recognition that the patient is not ‘just a statistic,’ but a conscious, intelligent agent, just as the doctor is.”

“The objection raised over and over to any proposed expansion of health insurance was, in so many words: Why should I contribute to the care of those degenerates who choose to smoke and eat cheeseburgers? … we persist in subjecting anyone who dies at a seemingly untimely age to a kind of bio-moral autopsy: Did she smoke? Drink excessively? Eat too much fat and not enough fiber? Can she, in other words, be blamed for her own death?”

My rating:


Natural Causes was published in the UK by Granta on April 12th. My thanks to the publisher for the free copy for review.

 

 

Human Errors: A Panorama of Our Glitches, from Pointless Bones to Broken Genes by Nathan H. Lents

Lents is a biology professor at John Jay College, City University of New York, and in this, his second book, he explores the ways in which the human body is flawed. These errors come in three categories: adaptations to the way the world was for early humans (to take advantage of once-scarce nutrients, we gain weight quickly – but lose it only with difficulty); incomplete adaptations (our knees are still not fit for upright walking); and the basic limitations of our evolution (inefficient systems such as the throat handling both breath and food, and the recurrent laryngeal nerve being three times longer than necessary because it loops around the aorta). Consider that myopia rates are 30% or higher, the retina faces backward, sinuses drain upwards, there are 100+ autoimmune diseases, we have redundant bones in our wrist and ankle, and we can’t produce most of the vitamins we need. Put simply, we’re not a designer’s ideal. And yet this all makes a lot of sense for an evolved species.

My favorite chapter was on the inefficiencies of human reproduction compared to that of other mammals. Infertility and miscarriage rates are notably high, and gestation is shorter than it really needs to be: because otherwise their heads would get too big to pass through the birth canal, all babies are effectively born premature, so are helpless for much longer than other newborn mammals. I also especially liked the short section on cancer, which would eventually get us all if we only lived long enough. As it is, “evolution has struck an uneasy balance with cancer. Mutations cause cancer, which kills individuals, but it also brings diversity and innovation, which is good for the population.”

Lents writes in a good conversational style and usually avoids oversimplifying the science. In places his book reminded me of Kathryn Schulz’s Being Wrong and Mark O’Connell’s To Be a Machine. It’s a wry and gentle treatment of human weakness; the content never turns depressing or bitter. Recommended for all curious readers of popular science.

Favorite lines:

“While lithopedions [“stone babies”] and abdominal pregnancies are quite rare, they are also 100 percent the result of poor design. Any reasonable plumber would have attached the fallopian tube to the ovary, thereby preventing tragic and often fatal mishaps like these.”

“to call our immune system perfectly designed would be equally inaccurate. There are millions of people who once happily walked this planet only to meet their demise because their bodies simply self-sabotaged. When bodies fight themselves, there can be no winner.”

 My rating:


Human Errors was published in the UK by Weidenfeld & Nicolson on May 3rd. My thanks to the publisher for the free copy for review.