The Diving Bell and the Butterfly by Jean-Dominique Bauby, trans. by Jeremy Leggatt

Jean-Dominique Bauby was in his early 40s and enjoying a career as editor in chief at French Elle magazine when he suffered a stroke and woke up, post-coma, with “locked-in syndrome”: he can only move one eye, and jiggle his head around a little. He writes this memoir – short at 132 pages, but still, extraordinary – by blinking his left eye at a friend who runs through the alphabet with him for every character in this book. That, alone, is astonishing.

But it’s also quite a good book. Chapters are short, episodic; language is often lovely, and not just descriptive. Where I expect someone in Bauby’s position to be bitter and melancholic, he is often nearly joyful, waxing about how he can go anywhere, taste anything in his mind.

My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.

In his imagination, he interacts playfully with the Empress Eugénie (his hospital’s patroness, who died in 1920); travels to New York, Hong Kong, Saint Petersburg; eats apricot pie, Alsatian sausage, or “a simple soft-boiled egg with fingers of toast and lightly salted butter.” (He is fed through a stomach tube.) He is also often very blue, as in the chapter ‘Sunday’ about how excruciating that day can be when he has no visitors and his hospital carers are indifferent to their job. But we don’t blame him, do we.

Bauby has both a sense of humor and a sense of the sublime. He tells us that in using the alphabet process wherein a guest runs through letters (not in ABC order, but in order of their frequency of use in French), some are inclined to wait for him to conclude each word himself: “unwilling to chance the smallest error, they will never take it upon themselves to provide the ‘room’ that follows ‘mush.'” Others jump to conclusions, in a hurry for the next word. “Yet I understood the poetry of such mind games one day when, attempting to ask for my glasses (lunettes), I was asked what I wanted to do with the moon (lune).” Lovely. Or: before the stroke, Bauby had been contemplating writing a modern retelling of The Count of Monte Cristo (fine book, that); now he finds it ironic that he is living the life of the character Grandpapa Noirtier, who also had locked-in syndrome. “As a punishment, I would have preferred to be transformed into M. Danglars, Franz d’Epinay, the Abbé Faria, or, at the very least, to copy out one thousand times: ‘I must not tamper with masterpieces.'” This is a narrator I like very much.

Lest that go too far, he’s not perfect, either. His relationship with his children and their mother, now that his world has so changed, is complicated by the fact that he had recently left them for another woman when he had his stroke.

This is a memoir with a heartbreaking human story at its core. Nothing much happens during the course of these pages – what has happened has already happened when it begins, although we do get a brief flashback version of the stroke itself, just at the end. (I suspect this question of sequence and not-happening will be Cynthia’s focus, in her upcoming seminar.) But the thoughts and feelings of this locked-in man are worthy of our attention, told as they are with careful focus, humor and humility, and a concern for language. Recommended.


Rating: 7 lucky days.

Appalachia North: A Memoir by Matthew Ferrence

Disclosure: Matt Ferrence was visiting faculty at this past winter’s residency at WVWC, and we really hit it off; I think he’s great, and he gifted me my copy of Blue Highways.


A shorter review now, with more to follow, because Still: the Journal has agreed to published my book review *and* an interview with Ferrence in their October issue. Hooray! For now, a teaser.

Building a literature based only on darkness is just another way to shackle ourselves to decline. Instead, we are who we are, and that’s the sound of red-winged blackbirds chirping in the blowing reeds alongside restoration wetlands, a dark plain bird with a hidden flash of brilliance, the real marker of hope.

You know I’m on an extended trip right now. I’ve been keeping track of birds, among other things. In the mid-east-coast area, I started to see red-winged blackbirds, which I don’t recall ever having seen before. They are a delight, that shock of bright red underlined by bright yellow on black-black background. I saw just a few, and then lots of them, diving and swooping and chattering at one another, plentiful as grackles. I looked them up, and see that they live where I’m from, too. How come I never saw a red-winged blackbird before?

This book is a little like that, for me. The recognition of something I didn’t know I needed, although it seems thoroughly obvious now I’ve seen it. And it’s from where I’m from, too. The synchronicities like this kept stacking up. Matt’s parents and my dad all love Wendell Berry, although his took it a step further and farmed on the farm they purchased when he was young, while we kept our city home even after purchasing a ranch when I was young. We’ve struggled with similar questions about where we’re from. My brain injury and his brain tumor are different, but also alike. Even the Facebook surveys we each put out about our home places, Pennsylvania or Northern Appalachia, and Texas. I can’t tell you how many times I scribbled “me too” in these margins. I don’t usually scribble anything in the margins at all, but when Matt sent me Blue Highways, I learned something.

Okay, then.

This book is that blend that I love best in nonfiction: both memoir and outward-looking examination of something larger than the self. Ferrence grew up on a farm in southwestern Pennsylvania. He didn’t know it yet, but he was born and raised in Northern Appalachia. At forty, he is diagnosed with a brain tumor. Appalachia is a much-maligned and little-understood region of this country, at least from the outside. Northern Appalachia is less understood, and (as Ferrence has it) exiled from both Appalachia and the U.S. He examines the geology and geography of sedimentary rock, mountains, and his own brain through many layers of metaphor. He pulls in plenty of outside voices: writers he admires (Abbey, Dillard, Sanders), and some he takes issue with. That’s another duality I deeply appreciate, that balance between one’s own voice and the voices that have informed it.

That’s all I want to say, in advance of Still‘s October issue – I will repost my longer review, and interview with Matt, when they’re available. For now, please know that this book caught me in that perfect place: both personally resonant in all the deepest ways, and an intellectual and artistic accomplishment I admire and would like to emulate. This is one of the most highly recommended books of 2019. And I don’t care who you are and where you’re from: you have something to learn from Appalachia North. Get out and get you a copy today. You’re welcome.


Rating: 9 collection points.

Fulton Theatre presents Next to Normal (2019)

I feel so glad and so lucky that I found a charming little theatre in Lancaster, Pennsylvania, and this play to attend. It was a phenomenal performance and experience all around. This is the best part of traveling: finding gems like this.

First of all, the space and background: let me set the stage, if you will. The Fulton Theatre is a grand, historic old opera house, of a certain type. The main theatre space is opulent, extravagant: ornate carvings, gilt, red velvet. My date and I snuck in to see this space after our play was over; but Next to Normal was performed upstairs, in the “studio.” It reminded me very much of the iDiOm/Sylvia, with spare furnishings and rows of chairs set up on the floor for the audience. I was a little disappointed not to see the big grand theatre in action, of course, but I admit seeing this smaller, simpler space was a comfort, because it reminded me of another theatre I’ve really appreciated (I’m still remembering Clown Bar fondly).

the lovely Fulton Opera House (photo credit)

So, a small space, unassuming, and with moderately minimal props and backdrop, and a small cast of just six. I have seen a larger cast play in small space – Clown Bar was one of those exceptions – but generally a smaller space does mean fewer players. They did indulge in costume changes, though.

Now on to the play, itself.

Next to Normal was written by Brian Yorkey (book and lyrics) and Tom Kitt (music), and I appreciate it very much as a play, to begin with. The topics it deals with are not small undertakings. Family dysfunction and severe mental illness are difficult to approach in any art form, I think. Here we have a mother, Diane, who is ill – how ill becomes gradually clear, but she clearly struggles to get out of bed and deal with her daily life within the home, let alone outside it. Her husband, Dan, means well, but he’s ill-equipped to help his wife with her outsized problems. There are two children who are affected in different ways. And there’s a big reveal part-way through, which I won’t spoil for you here, but it’s important.

Did I mention yet that this play was a musical? A rock musical, that is. It sounded weird coming in (doesn’t it sound weird?) – a rock musical about mental illness and family dysfunction.

The high-school-aged daughter gets her first boyfriend, and Diane has a psychiatrist, and then another (both played by the same actor); and that’s the whole cast: mom, dad, two kids, boyfriend, psych. In two acts, Diane gets sicker. She is prescribed lots of drugs; she experiences hallucinations; she attempts to kill herself; she is hospitalized, and undergoes electroconvulsive therapy (ECT). The nuclear family learns some things about themselves individually, about each other, and about how they work together. The ending is surprisingly hopeful, but feels earned.

My one real concern that I want to voice is something that often concerns me in conversations about mental illness. There seem to be two well-intentioned stories we tell ourselves/each other: that it’s okay to take drugs, to get the help one needs; and that one is stronger if one can be okay without drugs. I think it’s tricky to navigate these two messages, either one of which can be potentially damaging. On the one hand, there’s an argument that we’re too pill-happy in this culture, and that we start our kids on drugs too young. On the other hand, the feeling that you’re stronger if you can “do it” without drugs is really problematic for those people who suffer from conditions that require medication, as some do. The narrative of this play came down a little bit on the side of praising and admiring the drug-free path. And if that works for the fictional Diane, of course I am so happy for her. But that kind of praise can be discouraging, even damaging, for patients who need drugs to be okay. I just wanted to voice that because it occurred to me as I watched the play unfold. And as I’m writing this, I guess I need to observe how personal this material felt. Without violating anyone’s privacy, I thought of some loved ones who have struggled or are currently struggling in ways I recognized here. It was sobering and hard to watch, of course, but it also felt good to have certain people seen. Art is powerful. I’m glad that art addresses such topics as these – even the really hard ones – because the hardest parts of life deserve to have this light shined upon them.

Also, can we talk about the extraordinary image, above? Click through to the larger version. That woman with her blurred-out face, the suburban ideal in her torso, and the pills spilling out from her lower extremities. The sense of time passing all around her. That’s an ideal of accompanying art.

Even with this serious and disturbing material, Next to Normal is remarkably also very funny, and so heartwarming, even through the challenges. And played by such gifted actors – I could feel their passion and power. I paused to admire, at intermission, how odd it is that I can be simultaneously aware that this is “just” a play, and also so invested in these characters who are fiction, and I know that, and yet they make me laugh and cry, and I just want for Diane to be okay and for her daughter Natalie to feel loved and to know it’s okay, she doesn’t have to be perfect to make up for everything… I want Dan to know it’s not his job to fix his wife. Gosh, but I love the theatre.

The thing that was most surprising and impressive about this play I’ve saved for last. Listen to this: the actor who played Dan was unavailable at the last minute, and so they called upon an actor with twenty-four hours’ notice to step in. Jeffrey Coon did not have time to learn his lines; he played the role with a bound script in one hand, flipping through its pages as he went. But he knew the scenes! And he knew the music! He played the physical role perfectly, including interactions with other actors; he knew his blocking. And recall this is a musical: when he glanced down at that playbook for his lines, he was often not speaking but singing them. He knew the songs, musically, just needed the words as he went. Because Dan is some kind of businessman, often carrying a briefcase, he was able to make that bound script often serve as a prop, so that it sometimes disappeared and we could forget about it altogether. I have NEVER seen this before. And I cannot imagine it’s ever done this well: Coon’s acting as Dan was superb, spot-on emotionally and in key with his fellow players. His singing was impressive – great voice, but also timing and feeling. I cannot communicate here how impressed I was with this performance. I didn’t know it could work this well. I can only assume this guy (who works for the Fulton as his day job as well) is a professional ideal. My admiration for this art form has just been raised another ten notches, watching this man slide into this slot so smoothly. During final curtain calls, the other actors made a point to celebrate him, too, so that I could see they shared my feelings about his incredible performance.

I feel again like the luckiest woman alive, when I get to travel through a small city and find a shining experience like this one. I’m going to treasure Next to Normal, the Fulton Theatre, and Jeffrey Coon’s performance for some time.


Rating: 9 pills.

Breathe (2017)

Breathe is a lovely movie. If not the finest accomplishment of the art form, it was a very enjoyable, positive, uplifting story; and if that sounds sentimental, then guilty as charged, what do you want from me, I’m human. I appreciated knowing that it was a true story because I loved the background (nodding to the necessity for ADA legislation, for instance) of looking for hints of today in this version of yesterday. Disability rights matter to me. In the selfish way that our own experiences shape our concerns in the world, I have a bad knee; I had knee surgery some years ago and needed special accommodations a time or two, and my frustrations in meeting even my simple, and temporary, needs gave me a greater appreciation for the much bigger concerns of more profoundly and permanently challenged people.

This is a rather sentimental story, with a love story forming at least part of its heart. Robin and Diana meet and fall in love, and they marry around the time that he falls ill with a fever that ends in his total paralysis by polio: “you can’t even breathe for yourself.” He becomes depressed in the hospital (and who can blame him?!) but she won’t “let” him die, insists that he pursue his life anyway, and they have to break him out of the hospital against the wishes of its administration, in an era when polio patients were apparently, according to this film, basically imprisoned. What follows is a family of friends making their own way: building him a wheelchair that incorporates his breathing apparatus, dealing with the obvious calamity of the breathing apparatus failing, and gradually freeing him to travel the world. They attend a disability conference in Germany where they have to literally break the doorway out of a hotel room to fit his chair in (this is where I see promises of ADA). He lives a longer and fuller life than anyone thought possible, frees some of his co-polio-sufferers from the hospital/prison system, and dies at home with his family with him–in an assisted suicide, by the way, thereby touching on another medical-ethics hot button.

This film absolutely deals in emotions, and gets a wee bit saccharine; but it felt really good, I learned some things, and it was, well, sweet. I had a perfectly nice time watching this movie and I cried at the end and then felt better again. There are worse ways to spend an evening.


Rating: objectively, 7, but I give 8 dusty Spanish roads for emotional impact.

Modern Death: How Medicine Changed the End of Life by Haider Warraich

This interdisciplinary study of death and how we can improve–not avoid–it is highly readable and timely.

modern-death

In Modern Death: How Medicine Changed the End of Life, Haider Warraich explores how human death has evolved over the course of history and offers recommendations for its future. A medical doctor, Warraich supplements his research with anecdotes from his personal experience, and draws on literature, theology, statistics and legal theory as well as the hard sciences. The resulting expert opinion is heartfelt, convincing and well informed.

Warraich begins with the mechanics of how cells die and the opportunities for analogy they offer: cells choose to die to promote the good of the organism; not dying on time is as bad as dying too soon. He recounts the medical advances that have increased human life spans astronomically in the last two centuries. Chiefly, people now die far less frequently from infection and simple injuries, instead living long enough to die of cancer and heart disease. Because of both medical and cultural shifts, more people die in hospitals or nursing homes than at home.

This is the story of how medicine learned to save and expand lives–especially through procedures like cardiopulmonary resuscitation–and then how medicine learned not to resuscitate. Warraich shows what modern death looks like, how it works, its achievements and shortcomings–and then investigates what a good death could look like, and how we can do better. Science has lengthened lives so successfully, delayed death so thoroughly, that our new problem often is not staying alive, but letting go.

In what comes to feel like the real heart of Modern Death, Warraich then studies the nuances of euthanasia, assisted suicides and the withdrawal of life support systems, and their legal histories in the United States and worldwide. He finds that these three categories of death are far less distinct than generally believed. Finally, he advocates strongly for patients’ control over their own ends of life and exhorts his readers–patients and physicians alike–to discuss death openly.

These conclusions form the book’s central purpose. Along the way, Warraich explores different cultures’ and religions’ approaches to death. He also discusses the philosophical and legal difficulties in defining death and life. Warraich’s chief goal is a better end-of-life experience for everyone.

If Modern Death occasionally uses a few more words than necessary, the inclusion of Warraich’s anecdotal experiences enliven what could have been a dry academic text. For readers interested in its thesis–that death is an important part of life, and medicine and society could do a better job of delivering this experience–it is a sincere and thorough examination of an often overlooked subject. Well served by Warraich’s professional expertise and earnest emphasis, this is an indispensable entry into the conversation about death.


This review originally ran in the January 6, 2017 issue of Shelf Awareness for the Book Trade. To subscribe, click here.


Rating: 7 cells.

book beginnings on Friday: Modern Death: How Medicine Changed the End of Life by Haider Warraich

Thanks to Rose City Reader for hosting this meme. To participate, share the first line or two of the book you are currently reading and, if you feel so moved, let us know what your first impressions were based on that first line.

I do enjoy learning more about end-of-life issues, medical and legal and ethical. This one seems to be for me.

modern-death

The opening chapter, “How Cells Die,” begins:

It had been the longest of months–in both the best and the worst possible ways. Brockton is a small town about a half-hour drive south of Boston, but in many ways it seems a world apart.

A little out of context, it seems, but we are just beginning. I like that it’s not a dry, thesis-sentence sort of beginning. Reading on, Haider Warraich does seem to grasp the idea of narrative writing, making his storytelling immediate and personal; and he does have a personal story to tell, being an MD. I am optimistic.

Modern Death is forthcoming in February. Stick around!


This quotation comes from an uncorrected advance proof and is subject to change.

Bellevue: Three Centuries of Medicine and Mayhem at America’s Most Storied Hospital by David Oshinsky

This fascinating history of New York’s famous public hospital provides a microcosm of national and worldwide medical history.

bellevue

Bellevue is one of the oldest and most famous names in United States hospitals, known for housing violent criminals and mental health patients, the homeless and sufferers of rare and exotic diseases. The incredible, multi-layered history told by David Oshinsky in Bellevue: Three Centuries of Medicine and Mayhem at America’s Most Storied Hospital covers medical and general history both national and global. This thorough narrative is wide-ranging and endlessly gripping.

The institution began in 1736 as an almshouse, where the indigent were housed and given rudimentary medical care. From these earliest days, “Bel-Vue” had a reputation for dealing with society’s unwanted. And as Oshinsky shows, in its many incarnations, this reputation is intact. The flipside is that this public hospital has always attracted service-minded professionals pursuing innovation. Before modern considerations of medical ethics, this often meant experimenting on Bellevue’s impoverished patients and their diverse range of ailments: in exchange for charity medical aid, the thinking went, they offered themselves for clinical trials–as painful and medieval as they could be at times. Nevertheless, the hospital became central over the years in battling the yellow fever epidemic of the 1790s, the “Great Influenza” of the 1910s, the AIDS crisis of the 1980s, the September 11 attacks and Superstorm Sandy. Bellevue would see hospitals shift from being considered a last resort, only for those too poor to afford a private doctor’s home visits, to becoming the best medical care available (the development of anesthesia, germ theory and infection control being crucial).

The hospital has enjoyed affiliations with several medical schools, among the U.S.’s earliest and best, including its continuing relationship with New York University. NYU students get training in a premier teaching hospital that still treats an enormous and diverse patient population, while Bellevue gets talented, passionate residents and interns, many of whom remain and make their careers there. The history of Bellevue reflects social struggles, as women, Jews and African Americans gradually gained access to the medical profession, and anti-immigrant vitriol was aimed in turn at Irish, Italian and Jewish populations, among others, as waves of struggling immigrants contributed to Bellevue’s patient population. Bellevue successfully treated New York’s sole Ebola patient in 2014. Its tenuous funding situation (mostly public, and always under attack), high standards of care and public service mission continue.

Bellevue’s beauty and staggering scope lies in these historic, social and interdisciplinary connections. William Burroughs, Sylvia Plath, Charlie Mingus and Lead Belly passed through Bellevue’s history; its physicians have traveled the world and played roles in the scientific advances that have shaped modern medicine. Bellevue hosted the invention of forensic medicine, and major developments in medical photography, child psychiatry and AIDS treatments. Oshinsky (Pulitzer Prize-winner for Polio: An American Story) generally adheres to an impersonal, journalistic style, but his moving portrayal can’t hide his admiration for this longstanding institution. Bellevue is that rare, page-turning history: engaging, smart, clearly written and of broad general interest.


This review originally ran in the October 14, 2016 issue of Shelf Awareness for the Book Trade. To subscribe, click here.


Rating: 9 five-gallon containers of fuel.
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