Nonfiction about doctors’ memorable patients and a life of chronic pain and disability; novels set in 1970s Canada and contemporary (but magically outside-of-time) Paris.
That One Patient: Doctors’ and nurses’ stories of the patients who changed their lives forever by Ellen de Visser
[Translated from the Dutch by Brent Annable]
Ellen de Visser is a science writer for the most popular newspaper in the Netherlands, De Volkskrant. Her “That One Patient” column, which began in the summer of 2017, turns interviews with medical professionals into punchy first-person narratives. A collection of them was published in Dutch in 2019. This English translation tacks on 10 additional pieces based on conversations with English and American practitioners (including Dr. Anthony Fauci, immunologist and presidential medical advisor), four of them explicitly reflecting on COVID-19.
Many of the cases are decades old yet stuck with the doctor or nurse in question because of a vital lesson learned. Overtreatment is regretted just as much as an omission of care. Again and again, these medical professionals conclude that it’s impossible to judge someone else’s decisions or quality of life. For instance, a surgeon admits he had a hard time empathizing with his obese patients undergoing stomach reduction until he followed up with a young woman who told him about how invisible she’d felt before her surgery. Premature and disabled children bring grief or joy, not always in the expected doses. A doctor resents the work his team puts into repairing a woman who jumped from an eighth-floor window – why the heroic measures for someone who wanted to die? – until he learns she was pushed. A cancer surgeon develops breast cancer and now knows exactly what her patients go through.
Some of these stories are disturbing: being stalked by a patient with a personality disorder, a man poisoning his girlfriend, a farmer predicting the very day and time of his death. A gynaecologist changes his mind about abortion after he meets a 15-year-old who gave birth at home and left her baby outside in a plastic bag to die of exposure. Other pieces are heart-warming: A paramedic delivers a premature, breech baby right in the ambulance. Staff throw a wedding at the hospital for a dying teen (as in Dear Life by Rachel Clarke). A woman diagnosed with cancer while pregnant has chemotherapy and a healthy baby – now a teenager. There’s even a tale from a vet who crowdfunded prostheses for a lively terrier.
One unique thing about the Netherlands is that euthanasia is legal and provided by doctors upon the express request of a patient suffering from a terminal illness. It is taken for granted in these essays, yet some interviewees express their discomfort with it as an option for young patients. De Visser is careful to note that, even with the situation as it is, only 4% of deaths in the Netherlands are by euthanasia, and the majority of these are end-stage cancer cases.
As with any collection of this nature, some stories are more enticing than others, but overall I found it a surprising and moving set of reflections that is alive to ethical complexities and grapples with tough issues like disability, doctor error, loneliness, pain, and sense of purpose.
Two quotes, in particular, stood out to me, one from a nurse – “We are only ever guests in other people’s lives, and that’s how we ought to behave” – and the other from Dr. Fauci’s piece. In 2014 he treated a doctor who had been volunteering in Sierra Leone after an Ebola outbreak but became ill with the virus and had to be evacuated. “He cited Hippocrates: ‘It is far more important to know what sort of person has the disease, rather than what sort of disease the person has.’ You treated me like a person, not a disease, he said. And that’s what medicine is all about.”
With thanks to 4th Estate for the proof copy for review.
A Still Life: A Memoir by Josie George
Over a year of lockdowns, many of us have become accustomed to spending most of the time at home. But for Josie George, social isolation is nothing new. Chronic illness long ago reduced her territory to her home and garden. The magic of A Still Life is in how she finds joy and purpose despite extreme limitations. Opening on New Year’s Day and travelling from one winter to the next, the book is a window onto George’s quiet existence as well as the turning of the seasons. (My full review will appear in a forthcoming issue of the Times Literary Supplement. See also Eleanor’s thorough review.) This is top of my wish list for next year’s Barbellion Prize shortlist.
With thanks to Bloomsbury for the proof copy for review.
A Town Called Solace by Mary Lawson
I discovered Mary Lawson in 2015 with Road Ends and caught up with Crow Lake in the summer of 2019. All four of her books are set in fictional locations inspired by the villages and rural areas of Northern Ontario, where the author grew up before moving to England in 1968. So Solace, while not a real town, is true to her memory and, despite the sometimes gruff or know-it-all locals, an emotional landmark for the three central characters, all of whom are processing trauma and looking for places of comfort where they can start over.
1972. First we meet Clara, a plucky seven-year-old sitting vigil. She’s waiting for the return of two people: her sixteen-year-old sister, Rose, who ran away from home; and their next-door neighbour, Mrs. Orchard, whose cat, Moses, she’s feeding until the old lady gets back from the hospital. As days turn into weeks, though, it seems less likely that either will come home, and one day Clara sees a strange man moving boxes around in Mrs. Orchard’s house. This is Liam Kane, who’s inherited the house from a family friend. In his thirties and recently divorced, he’s taking a break in this tiny town, never imagining that he might find a new life. The third protagonist, and only first-person narrator, is Elizabeth, who lies in a hospital bed with heart trouble and voices her memories as a monologue to her late husband.
As we cycle through these three characters’ perspectives in alternating chapters, we gradually come to understand the connections between them. There are satisfying parallels in that, on multiple occasions but in slightly different ways, a child attaches to an older person or an adult stands in as a guardian for a neglected child. All of Lawson’s creations, even the secondary figures, are dealing with distressing memories or a loss of some kind, the details of which might only emerge much later on. Solace offers myriad opportunities for recovery, whether kitty playtime at Mrs. Orchard’s or diner food and homemade ice cream.
Like Lawson’s other works, this is a slow burner featuring troubled families. Her characters, often full of regret and sorrow, take a shadowy past as a prompt to reset their lives. They’re charming in spite of their flaws. I recalled that Crow Lake also looks back to the climactic happenings experienced by a seven-year-old girl. And like Road Ends, A Town Called Solace makes a convincing case for present decisions being influenced by historical trauma. It’s a tender and inviting story I’d recommend to readers of Wendy McGrath and Anne Tyler, with Clever Girl by Tessa Hadley and Olive, Again by Elizabeth Strout as specific readalikes. (My dilemma now is whether to read my only remaining Lawson novel, The Other Side of the Bridge, right away or save it: she’s not the most prolific author, with four books in 19 years.)
A favorite passage:
[Liam’s] life prior to coming north seemed to be taking on the quality of an old movie, one in which he’d been deeply engrossed while watching it but which now seemed trivial, unconvincing and profoundly lacking in either colour or plot. Solace had colour and plot in spades, maybe too much. In every way it was coming to seem more real than Toronto, with its endless malls and traffic jams and high-powered jobs. Though maybe, if he went back to Toronto, the same would be true in reverse. Maybe when he’d been back for a couple of months he’d find that it was Solace that seemed unreal, its unremarkable streets and stores like something from a dream, its dramatic landscape fading to nothing, like a holiday photo left in the sun.
With thanks to Chatto & Windus for the free copy for review.
The Strays of Paris by Jane Smiley
(Published in the USA in December 2020 under the title Perestroika in Paris. It’s been given a The Boy, the Mole, the Fox and the Horse treatment for its UK release.)
My summary for Bookmarks magazine: “A racehorse, Perestroika—nicknamed Paras—strays from her unlocked suburban stable one day, carrying her groom’s purse in her mouth, and ends up in Paris’s Place du Trocadéro. Here she meets Frida the dog, Sid and Nancy the mallards, and Raoul the raven. Frida, whose homeless owner died, knows about money. She takes euros from the purse to buy food from a local market, while Paras gets treats from a baker on predawn walks. Etienne, an eight-year-old orphan who lives with his ancient great-grandmother, visits the snowy park to feed the wary animals (who can talk to each other), and offers Paras a home. A sweet fable for animal lovers.”
Yes, this is a talking animal book, but the animals only talk to each other; they communicate with humans through their gestures and soulful eyes. Kindly shopkeepers work out what Frida wants to buy based on what she stares at or points to with a paw; the baker whose window Paras passes on her early morning walks intuits that the horse is hungry; Etienne, who gives a couple of the stray animals a home during a chill winter, learns to understand when Paras needs to go out to relieve herself, after piles of dung build up in the sitting room.
I liked how patiently and convincingly Smiley builds the portrait of each character – human or animal – and the overall situation of kindness and good fortune. Raoul is particularly amusing for his birdsplaining: “It is a feature of age. I have learned so many things in my life that they just force their way out of my beak,” he says. However, a crow would be much more realistic for Paris (or any city) than a raven, and, overall, this was a little twee and farfetched for my tastes. It was nice to read something a bit different from Smiley, who I haven’t tried since her Last Hundred Years Trilogy. She has a sideline in YA horse novels; this should probably have been lumped with those. (Annabel liked it a bit more.)
I was sent an unsolicited review copy by Picador/Mantle.
What recent releases can you recommend?
The Barbellion Prize 2020 will be awarded tomorrow “to an author whose work has best represented the experience of chronic illness and/or disability.” (See also my reviews of Golem Girl by Riva Lehrer and Sanatorium by Abi Palmer.)
These two memoirs, though very different outwardly, both draw attention to the practical and emotional challenges of life with disability or a mental illness, and call for compassion from individuals and a commitment to help from governing bodies.
The Fragments of My Father: A memoir of madness, love and being a carer by Sam Mills
One in eight people in the UK cares for an ill or disabled relative. Sam Mills has been a carer for a parent – not once, but twice. The first time was for her mother, who had kidney cancer that spread to her lungs and died one Christmas. A few years later, Mills’s father, Edward, who has paranoid schizophrenia, started having catatonic episodes, as with the incident she opens her memoir on. In 2016, on what would have been her mother’s 70th birthday, Edward locked himself in the toilet of the family home in Surrey. Her brother had to break in with a screwdriver and ambulance staff took him away to a hospital. It wasn’t the first time he’d been institutionalized for a mental health crisis, nor would it be the last. It was always excruciating to decide whether he was better off at home or sectioned on a ward.
Mills darts between past and present as she contrasts her father’s recent condition with earlier points in their family life. She only learned about his diagnosis from her mother when, at age 14, she saw him walk down the stairs naked and then cry when he burned the chips. While schizophrenia can have a genetic element, relatives of a schizophrenic are also more likely to be high achievers. So, although Mills went through a time of suicidal depression as a teenager, meditation got her through and she exhibits more of the positive traits: An author of six books and founder of the small press Dodo Ink, she is creative and driven. Still, being her father’s full-time carer with few breaks often leaves her exhausted and overwhelmed.
The book’s two main points of reference are Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives and had to make difficult choices about their treatment and housing. In a nutshell, Mills concludes that Woolf was a good carer while Fitzgerald was a terrible one. Leonard was excused World War I service due to his nervous exhaustion from being a carer, and he gave up on the idea of children when doctors said that motherhood would be disastrous for Virginia. Virginia herself absolved Leonard in her suicide note, reassuring him that no couple could have been happier and that no one could have looked after her better. Scott, on the other hand, couldn’t cope with Zelda’s unpredictable behaviour – not least because of his own alcoholism – so had her locked up in expensive yet neglectful institutions and censored her work when it came too close to overlapping with his own plots.
The Fragments of My Father brings together a lot of my favourite topics to read about: grief, physical and mental illness, and literary biography. It had already been on my wish list since I first heard about it last year, but I’m glad the Barbellion Prize shortlisting gave me a chance to read it. It helps to have an interest in the Fitzgeralds and Woolfs – though in my case I had read a bit too extensively about them for this strand to feel fully fresh. (I also had a ‘TMI’ response to some revelations about the author’s relationships and sex life.)
Ultimately, I most appreciated the information on being a carer, including the mental burden and the financial and social resources available. (Although there is a government allowance for carers, Mills wasn’t eligible because of her freelance earnings, so she had to apply for Society of Authors grants instead.) With caring so common, especially for women, we need a safety net in place for all whose earnings and relationships will be affected by family duties. I read this with an eye to the future, knowing there’s every possibility that one day I’ll be a carer for a parent(-in-law) or spouse.
Readalikes I have also reviewed:
- Labours of Love: The Crisis of Care by Madeleine Bunting
- All the Lives We Ever Lived: Seeking Solace in Virginia Woolf by Katharine Smyth
“had I ever made a conscious choice? Caring felt like something that was happening to me, as though my father’s illness had been an eruption that had flowed like lava over my life. … I can’t think of any other job where someone defines your role by conferring its title on you, as though they are holding out a mould that you must fill.”
“caring is rarely simple because its nature is not static. It creates routines, crafts the days into set shapes, lulls you into states of false security, and then mutates, slaps you with fresh challenges, leaves you lost just when you feel you have gained wisdom.”
With thanks to Fourth Estate for the free copy for review.
Kika & Me: How one extraordinary guide dog changed my world by Dr Amit Patel with Chris Manby
Dr Patel grew up in Guildford, studied medicine at Cambridge, and specialised in trauma medicine as a junior doctor in London. Diagnosed with keratocornus, which changes the shape of the cornea (it affects 1 in 450), he required first special contact lenses and then a series of cornea transplants. By the time of his eighth transplant, he’d remortgaged his house to pay an American specialist. Meeting and marrying Seema was a time of brightness before, in November 2013, he completely lost his vision within 36 hours. Blindness meant that he could no longer do his job, and constant eye pain and inactivity exacerbated his depression. While white cane and Braille training, plus the Royal National Institute of Blind People’s “Living with Sight Loss” course, started to boost his independence, it was being paired with his guide dog, Kika the Labrador, in 2015 that truly gave Patel his life back.
Trying out guide dogs sounds a little bit like speed dating. The Guide Dogs for the Blind Association (founded in the UK in 1931) warned that Kika was a “Marmite dog,” moody and likely to push boundaries; there was no guarantee she and Patel would get along. But from the start Kika was just right for him. More than once, what seemed like her pure stubbornness – lying on his feet and refusing to move – kept him from dangerous situations, like getting trapped between a busy road and a building site on an unfamiliar route. After a 10-day core skills training course, during which man and dog stayed at a hotel together, Kika was ready to join them at home. In the days to come, she would learn all Patel’s usual routes around their neighbourhood and into the City – with the help of smears of mackerel pâté.
If you’re like me, you’ll be most curious to learn about the nitty-gritty of life for a visually impaired person. I loved hearing about how Patel practiced his Braille letters with an egg container and ping pong balls. Since he went blind, he and his wife have had two children, and with Kika’s help manoeuvring a baby buggy is no problem. Guide dogs are trained to be predictable, e.g., doing their business in the same spot at the same times so it’s much easier to find and clean up. Some dog training tricks also worked for children, like putting a bell on a Labrador or a toddler to know when they wandered off!
Patel has had some unfortunate experiences since he went blind, particularly on the London Underground: teenagers picking him up and spinning him around on a train platform, busy commuters barging past him and Kika on an escalator, and an impatient woman hitting Kika with her handbag. While Patel doesn’t like being negative on social media, he finds that posting video clips of these incidents raises awareness of the challenges VIPs face. Every time he hits a setback, he uses it as an opportunity. For instance, one Diwali he was excited to visit Neasden Temple, only to be dismayed that they wouldn’t allow Kika inside. Since then, he has worked with temples around the world to improve disability services. He is also involved in London’s “Transport for All” work, and advises companies on access issues.
More so than the rest of the shortlist, Kika & Me is illuminating about daily life with a disability and has a campaigning focus. It’s an easy read, and not just for animal lovers. Judging the book by the cover, I might not have picked it up otherwise, so I’m grateful that the Barbellion put it on my radar. I’m deeply impressed by what Patel has achieved and the positive attitude he maintains. (Kika has her own Twitter account! @Kika_GuideDog)
With thanks to Pan Macmillan for the free copy for review.
Next year the Barbellion Prize hopes to award more money, including to all nominated authors. They are accepting submissions for 2021, and are grateful for any Paypal donations via their website (see the page footer). I’ve donated to the cause. Can you help, too?
A diagnosis of motor neurone disease; a father’s dispiriting experience of censorship trials. An illustrated history of fonts; an essay on grief; a cold weather-appropriate record of geese-watching. I gear up for Nonfiction November by catching up on five nonfiction review books I’ve been sent over the last couple of months. You can’t say that I don’t read a variety, even within nonfiction! See if one or more of these tempts you.
A Short History of Falling: Everything I Observed about Love whilst Dying by Joe Hammond
Hammond, a playwright, takes a wry, clear-eyed approach to his diagnosis of motor neurone disease (ALS) and the knowledge that his physical capacities will only deteriorate from here on out. “New items arrive almost daily and I am unexpectedly becoming the curator of the Museum of my own Decline.” Yet he also freezes funnier moments, like blowing his nose on a slice of bread because he couldn’t reach a tissue box, or spending “six hours of my fiftieth birthday sat on this hospice toilet, with a bottle of good Scotch wedged between my knees.”
Still, Hammond regrets that he’s become like a third small child for his wife Gill to look after, joining his sons Tom and Jimmy, and that he won’t see his boys grow up. (This book arose from an article he wrote for the Guardian in 2018 about making 33 birthday cards for his sons to open in the years after his death.) Although I wasn’t as interested in the details of Hammond’s earlier life, or his relationship with his narcissistic father, I appreciated his quiet acceptance of disability, help and impending death.
“I’ve waited all my life to know this peace. To know that I am nothing more than this body.”
“my place in all of this is becoming smaller, historic and just the right size of important.”
With thanks to 4th Estate for the free copy for review.
An Author on Trial: The Story of a Forgotten Writer by Luciano Iorio
The author’s father, Giuseppe Jorio, was a journalist and schoolteacher who wrote an infamous novel based on an affair he had in the 1930s. Using italicized passages from his father’s diary and letters to Tina, who was 19 when their affair started, Iorio reconstructs the sordid events and unexpected aftermath in fairly vivid detail. Tina fell pregnant and decided to abort the baby. Meanwhile, Giuseppe’s wife, Bruna, got the truth out of him and responded with more grace than might be expected. Giuseppe was devastated at the loss of his potential offspring, and realized he wanted to have a child with Bruna. He bid Tina farewell and the family moved to Rome, where the author was born in 1937.
Giuseppe’s novel inspired by the affair, Il Fuoco del Mondo (The Fire of the World) was rejected by all major publishers and accused of obscenity in a series of five trials that threatened his reputation and morale. It’s a less familiar echo of the Lady Chatterley’s Lover trial, and a poignant portrait of a man who felt he never lived up to his potential because of bad luck and societal disapproval. I enjoyed learning a bit about Italian literature. However, inconsistent use of tenses and shaky colloquial English (preposition issues, etc.) suggest that a co-writer or translator was needed to bring this self-published work up to scratch.
With thanks to the publicist for the free copy to review as part of a blog tour.
ABC of Typography by David Rault
[Translated from the French by Edward Gauvin]
From cuneiform to Gutenberg to Comic Sans, this history of typography is delightful. Graphic designer David Rault wrote the whole thing, but each chapter has a different illustrator, so the resulting book is like a taster course in comics styles. As such, I would highly recommend it to those who are fairly new to graphic novels and want to see whose work appeals to them, as well as to anyone who enjoyed Simon Garfield’s book about fonts, Just My Type.
I found it fascinating to explore the technical characteristics (serif vs. sans serif, etc.) and aesthetic associations of various fonts. For instance, I didn’t realize that my mainstay – Times New Roman – is now seen as a staid choice: “Highly readable, but overexposed in the early days of the Internet, it took on a reputation for drabness that it hasn’t shed since the ’90s.” Nowadays, some newspapers and brands pay typeface creators to make a font for their exclusive use. Can you name the typeface that is used on German road signs, or in Barack Obama’s campaign materials? (You’ll be able to after you read this.)
With thanks to SelfMadeHero for the free copy for review.
Time Lived, Without Its Flow by Denise Riley
What Virginia Woolf’s essay “On Being Ill” does for sickness, this does for bereavement. Specifically, Riley, whose son Jake died suddenly of a heart condition, examines how the experience of time changes during grief. “I’ll not be writing about death, but about an altered condition of life,” she opens. In short vignettes written from two weeks to three years after her son’s death, she reflects on how her thinking and feelings have morphed over time. She never rests with an easy answer when a mystery will do instead. “What if” questions and “as if” imaginings proliferate. Poetry – she has also written an exquisite book of poems, Say Something Back, responding to the loss of Jake – has a role to play in the acceptance of this new reality: “rhyme may do its minute work of holding time together.”
Max Porter provides a fulsome introduction to this expanded version of Riley’s essay, which first appeared in 2012. This small volume meant a lot more to him than it did to me; I preferred Riley’s poetic take on the same events. Still, this is sure to be a comfort for the bereaved.
“I’ll try to incorporate J’s best qualities of easy friendliness, warmth, and stoicism, and I shall carry him on in that way. Which is the only kind of resurrection of the dead that I know about.”
“I don’t experience him as in the least dead, but simply as ‘away’. Even if he’ll be away for my remaining lifetime. My best hope’s to have a hallucination of his presence when I’m dying myself.”
With thanks to Picador for the free copy for review.
Wintering: A Season with Geese by Stephen Rutt
Rutt’s The Seafarers: A Journey among Birds, one of my favorite recent nature/travel books, came out in May. What have we done to deserve another publication from this talented young author just four months later?! I didn’t enjoy this as much as The Seafarers, yet it does a lot of the same things well: it provides stunning word portraits of individual bird species, explores the interaction between nature and one’s mental state, and gathers evidence of the cultural importance of birds through legends and classical writings.
Here the focus is on geese, which the author had mostly overlooked until the year he moved to southern Scotland. Suddenly they were impossible to ignore, and as he became accustomed to his new home these geese sightings were a way of marking the seasons’ turn. Ethical issues like hunting, foie gras and down production come into play, and, perhaps ironically, the author eats goose for Christmas dinner!
Rutt’s points of reference include Paul Gallico (beware plot spoilers!), Aldo Leopold, Mary Oliver and Peter Scott. The writing in this short book reminded me most of Horatio Clare (especially The Light in the Dark) and Jim Crumley (who’s written many short seasonal and single-species nature books) this time around.
A favorite passage (I sympathize with the feelings of nomadism and dislocation):
“I envy the geese their certainty, their habits of home. I am forever torn between multiple places that feel like home. Scotland where I live or Suffolk, Essex, Norfolk: the flatlands of golden evenings and reeds, mud and water and sand. The distant horizon and all the space in between I grew up with, which seems to lurk somewhere, subconsciously calling me back.”
[Neat aside: My husband and I both got quotes (about The Seafarers) on the press release for this book!]
With thanks to Elliott & Thompson for the free copy.