Tag Archives: chronic illness

February Releases by de Visser, George, Lawson, and Smiley

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 Winner

It has been a pleasure following the Barbellion Prize race this year. In case you haven’t already seen the news, the winner of the inaugural award is Golem Girl by Riva Lehrer (my review).

It’s not often that my favourite from a literary prize list is also the judges’ pick, so I’m particularly pleased that my prediction came true. The full announcement is here. Here’s what two of the judges had to say:

Assistant Professor of Literature Dr Shahd Alshammari: “Golem Girl is a memoir that is infused with art, life, discrimination, love, self-love, and what it means to be vulnerable. Disability is on every page—and that is the type of literature we need.”

Cat Mitchell, Lecturer and Programme Leader of the Writing and Publishing degree at the University of Derby: “Golem Girl is a powerful and wide-reaching account of a life lived with disability. By interweaving her writing and art, Riva explores queerness, community, society’s fear of difference, and the often problematic representation of disabled bodies in art and medicine.”

Professor Tom Shakespeare FBA, Professor of Disability Research at London School of Hygiene and Tropical Medicine, and an advisor to the Prize, added: “From Pope to Stevenson, Woolf to Plath, writers have lived with illness and disability for centuries. Now here comes exactly the right prize at the right time: disabled writers have been locked down far longer, and deserve far more recognition than they get. The Barbellion Prize deserves to succeed, and Riva Lehrer’s Golem Girl will put it on the map.”


To recap, the other three on the shortlist were:

It’s been quite the whirlwind reading and reviewing all four books as the first two review copies only arrived on the 28th of January. Most of my reviews got bunched up right in the 36 or so hours before the announcement, but I was relieved that I managed to get them all up in advance. The Prize basically has no budget, so when I approached Cat (who used to work in publicity at Penguin) and asked if I and a handful of other bloggers could get involved, I wasn’t sure if it would be a possibility. I was really grateful to the four publishers for being willing to supply review copies. I hope we have helped to get the word out there.


The Barbellion Prize is already accepting entries for the 2021 award (submissions close on 31 October; see the website for more information). On my wish list thus far are two excellent memoirs, Sanctuary by Emily Rapp Black, who has a prosthetic leg and lost her son to Tay-Sachs disease, and A Still Life by Josie George, who lives joyfully with chronic illness.

Other relevant 2021 releases I’m interested in getting hold of are: The Invention of Miracles: language, power, and Alexander Graham Bell’s quest to end deafness by Katie Booth, Places I’ve Taken My Body by Molly McCully Brown, What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller, and Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White.

 

Have you been inspired to read any of the shortlisted books?

Introducing the Barbellion Prize & A Review of Sanatorium by Abi Palmer

New this year, the Barbellion Prize will be awarded annually “to an author whose work has best represented the experience of chronic illness and/or disability.” It’s named after W.N.P. Barbellion (the pen name of Bruce Frederick Cummings), the English author of The Journal of a Disappointed Man, which he started writing at 13. A self-taught naturalist, he specialized in lice when he worked for the British Museum’s department of natural history in London. He was rejected for war service in 1915 after a doctor found him to have multiple sclerosis. At that time, the diagnosis was like a death sentence; indeed, Cummings died at age 30 in 1919, though by then he had managed to produce two volumes of memoirs as well as a daughter.

Here’s some more information on the prize criteria from the website: “Eligibility for the prize is predicated on the author’s presentation of life with a long-term chronic illness or disability, whether that be in the form of blindness, MS, cystic fibrosis, dwarfism, or another comparable condition that may substantially define one’s life. Authors – such as those in a carer’s capacity – who themselves are not ill may be considered for the prize if their work is truly exceptional as an articulation of life with illness, but authors who themselves deal personally with illness or disability will take priority in any selection for the prize.”

Especially in the absence of the Wellcome Book Prize, which has been on hiatus since the announcement of the 2019 winner, I’m delighted that there is a new prize with a health slant, particularly one that will lead to greater visibility for disabled writers and their stories. From a longlist of eight, in January the Barbellion Prize judges chose a shortlist of four titles: three memoirs and a work of autofiction. The publishers kindly agreed to send me the shortlist for review. Two have arrived so far (there have been postal delays in the UK, as in many places).

I have already read one of the nominees and will do my best to review the rest before the £1000 prize is awarded on the 12th. The others are:

  • Golem Girl by Riva Lehrer – An illustrated memoir by a visual artist born with spina bifida.
  • The Fragments of My Father by Sam Mills – A memoir of being a carer for her father, who has paranoid schizophrenia; also includes musings on Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives. I’m currently reading this one.
  • Kika & Me by Amit Patel – Patel was a trauma doctor and lost his sight within 36 hours due to a rare condition. He was paired with his guide dog, Kika, in 2015.

 

 

Sanatorium by Abi Palmer (2020)

Water is a source of comfort and delight for Abi, the narrator of Sanatorium (whose experiences may or may not be those of the author; always tricky to tell with autofiction). Floating is like dreaming for her – an intermediate state between the solid world where she’s in pain and the prospect of vanishing into the air. In 2017 she spends a few weeks at a sanatorium in Budapest for water therapy; when she returns to London she buys a big inflatable plastic bathtub to keep up the exercises as she tries to wean herself off of opiates.

Abi feels fragile due to a whole host of body issues, some in her past but most continuing into the present: an autoimmune connective tissue disorder, psoriatic arthritis, Crohn’s disease, and sexual assaults. Her knee is most immediately problematic, leading her to use a mobility scooter. As her health waxes and wanes, other people – unable to appreciate any internal or incremental changes – judge her by whether or not she is able to walk well.

The book is in snippets, often of just a paragraph or even one sentence, and cycles through its several strands: Abi’s time in Budapest and how she captures it in an audio diary; ongoing therapy at her London flat, custom-designed for disabled tenants (except “I was the only cripple who could afford it”); the haunted house she grew up in in Surrey; and notes on plus prayers to St. Teresa of Ávila, accompanied by diagrams of a female figure in yoga poses.

Locations are given in small letters in the top corner of the page, apart from for the more dreamlike segments that can’t be pinned down to any one place. For instance, I was reminded of a George Saunders story by the surreal interlude in which Abi imagines Van Gogh’s Starry Night reproduced in the hair on a detached pair of legs mounted on a wall as a work of art.

The different formats and short chunks of prose generally keep the voice from becoming monotonous, though I did wonder if occasional use of the third person (and some more second person) could have been effective, too. Far from a straightforward memoir, the book incorporates passages that are closer to fantasy and poetry, and the visual elements and fertile imagery attest to Palmer’s background as a mixed-media artist.

Sanatorium is a fascinating work – matter-of-fact, playful and sensual – that vividly conveys the reality of life with a chronic illness. It was already on my wish list, but I’m so glad that this shortlisting gave me a chance to read it. Though I haven’t read the other nominees yet, the passages below are proof that this would be a deserving Barbellion Prize winner.

You go through life as a chronically ill person with so many different people who have so many different opinions about how your treatment should be. They’re not always useful or right. You have to build your own narrative and your own sense of what feels appropriate. You have to learn to trust your body to tell you what’s working. But that’s hard too, when your body keeps changing the rules.

I am one of the more privileged ones and still I’m screaming. God, it would be so nice just to dissolve into nothing and wash up onto a lonely beach.

I wonder if what I’ve learned about chronic illness, more than anything, is that it’s a constant cycle. You fall apart, then you try your best to rebuild again. I wonder what would happen if I stopped trying.

Readalikes I have also reviewed:


With thanks to Penned in the Margins for the free copy for review.