Tag Archives: chronic illness

The Best Books from the First Half of 2021

Hard to believe we’ve already crossed the midpoint of the year. My top 20 releases of 2021 thus far, in alphabetical order within genre (fiction is dominating this year!), are below. I link to those I’ve already reviewed in full here or on Goodreads:

 

Fiction

Under the Blue by Oana Aristide: Fans of Station Eleven, this one’s for you: the best dystopian novel I’ve read since Mandel’s. Aristide started writing in 2017, and unknowingly predicted a much worse pandemic than Covid-19. In July 2020, Harry and sisters Ash and Jessie are among mere thousands of survivors worldwide. Their plan is to flee England for Uganda, out of range of Europe’s at-risk nuclear reactors. An epic road trip ensues. A propulsive cautionary tale that also reminded me of work by Louisa Hall and Maja Lunde.

 

The Push by Ashley Audrain: Blythe Connor, living alone with her memories, ponders what went wrong with her seemingly perfect family: a handsome architect husband, Fox, and their daughter Violet and baby son Sam. How much of what happened was because of Violet’s nature, and how much was Blythe’s fault for failing to be the mother the girl needed? The fact that her experience with Sam was completely different makes her feel ambivalent about motherhood. A cracking psychological thriller with an unreliable narrator.

 

A Lie Someone Told You About Yourself by Peter Ho Davies: Davies’ minimalist approach – short sections skating over the months and years, wryly pulling out representative moment – crystallizes fatherhood, illuminating its daily heartaches and joys. The tone is just right in this novella, showing both sides of parenthood and voicing things you aren’t allowed to think, or at least not to admit to, starting with abortion, which would-be fathers aren’t expected to have strong feelings about. I loved the rumination on the role that chance plays in a life.

 

The Living Sea of Waking Dreams by Richard Flanagan: Extinction, personal and global, is at the heart of this timely and enchanting story. It starts off as a family drama. Francie, the 86-year-old matriarch, is in a Tasmanian hospital after a brain bleed. Her three middle-aged children can’t bear to let her go. In an Australia blighted by bushfires, species loss mirrors Francie’s physical and mental crumbling. Smartphone addiction threatens meaningful connection. And then characters start to literally disappear, part by part…

 

Mrs Death Misses Death by Salena Godden: Grief Is the Thing with Feathers meets Girl, Woman, Other would be my marketing shorthand for this one. Poet Salena Godden’s debut novel is a fresh and fizzing work, passionate about exposing injustice but also about celebrating simple joys, and in the end it’s wholly life-affirming despite a narrative stuffed full of deaths real and imagined. The novel balances the cosmic and the personal through Wolf’s family story. Unusual, musical, and a real pleasure to read.

 

Early Morning Riser by Katherine Heiny: This tickled my funny bone. A cross between Kitchens of the Great Midwest and Olive Kitteridge, it’s built of five extended episodes, crossing nearly two decades in the lives of Jane and Duncan and lovingly portraying the hangers-on who compose their unusual family constellation in Boyne City, Michigan. All the characters are incorrigible but wonderful. Bad things happen, but there’s a core of love as Heiny explores marriage and parenting. A good-natured book that feels wise and bittersweet.

 

No One Is Talking About This by Patricia Lockwood: This starts as a flippant skewering of modern life. A woman who became a social media star by tweeting quips like “Can a dog be twins?” reflects on life on “the portal” and under “the dictator.” Midway through the book, she gets a wake-up call when her mother summons her back to the Midwest for a family emergency. It’s the about-face that makes this novel, forcing readers to question the value of a digital existence based on glib pretence. Funny, but with an ache behind it.

 

In by Will McPhail: Alternately laugh-out-loud funny and gentle. This debut graphic novel is a spot-on picture of modern life in a generic city. Nick never knows the right thing to say. The bachelor artist’s well-intentioned thoughts remain unvoiced; all he can manage is small talk. That starts to change when he meets Wren, a Black doctor who sees past his pretence. If only he can find the magic words that elicit honesty, he might make real connections with other human beings. A good old-fashioned story, with a wide emotional range.

 

Detransition, Baby by Torrey Peters: A sparkling, sexy comedy with a tender heart beneath the zingers. Peters has set herself up as the Jane Austen of the trans community, tracing the ins and outs of relationships with verve and nuance. For me this was a valuable book simply for normalizing trans sexuality. The themes are universal, after all: figuring out who you are and what the shape of your life will be. I admire when authors don’t pander to readers by making things easy for those who are unfamiliar with a culture. Great lines abound.

 

Brood by Jackie Polzin: Polzin’s debut is a quietly touching story of a woman in the Midwest raising chickens and coming to terms with the shape of her life. The unnamed narrator is Everywoman and no one at the same time. At one point she reveals, with no fanfare, that she miscarried four months into pregnancy in the bathroom of one of the houses she cleans. There is a bittersweet tone to this short work. It’s a low-key, genuine portrait of life in the in-between stages and how it can be affected by fate or by other people’s decisions.

 

 

Nonfiction

The Circling Sky by Neil Ansell: Hoping to reclaim an ancestral connection, Ansell visited the New Forest some 30 times between January 2019 and January 2020, observing the unfolding seasons and the many uncommon and endemic species its miles house. He weaves together his personal story, the shocking history of forced Gypsy relocation into forest compounds starting in the 1920s, and the unfairness of land ownership in Britain. The New Forest is a model of both wildlife-friendly land management and freedom of human access.

 

The Inevitable by Katie Engelhart: Engelhart spends time with doctors and patients who are caught up in the assisted dying argument, chiefly in Western Europe and the United States. Each case is given its own long chapter, like an extended magazine profile. The stories are wrenching, but compassionately told. The author explores the nuances of each situation, crafting expert portraits of suffering people and the medical professionals who seek to help them, and adding much in the way of valuable context. A voice of reason and empathy.

 

The Screaming Sky by Charles Foster: A Renaissance man as well versed in law and theology as he is in natural history, Foster is obsessed with swifts and ashamed of his own species: for looking down at their feet when they could be watching the skies; for the “pathological tidiness” that leaves birds and other creatures no place to live. He delivers heaps of information on the birds but refuses to stick to a just-the-facts approach. The book quotes frequently from poetry and the prose is full of sharp turns of phrase and whimsy.

 

Intensive Care by Gavin Francis: Francis, an Edinburgh physician, reflects on “the most intense months I have known in my twenty-year career.” He journeys back through 2020, from the January day when he received a bulletin about a “novel Wuhan coronavirus” to November, when he learned of promising vaccine trials but also a rumored third wave and winter lockdown. An absorbing first-hand account of a medical crisis, it compassionately bridges the gap between experts and laymen. The best Covid chronicle so far.

 

A Still Life by Josie George: Over a year of lockdowns, many of us became 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. (Reviewed for TLS.)

 

Dusk, Night, Dawn by Anne Lamott: Lamott’s best new essays in nearly a decade. The central theme is how to have hope in God and in other people even when the news – Trump, Covid, and climate breakdown – only heralds the worst. One key thing that has changed for her is getting married for the first time, in her mid-sixties, to a Buddhist. In thinking of marriage, she writes about friendship, constancy, and forgiveness, none of which comes easy. Opportunities for maintaining quiet faith in spite of the circumstances arise all the time.

 

A Braided Heart by Brenda Miller: Miller, a professor of creative writing, delivers a master class on the composition and appreciation of autobiographical essays. In 18 concise pieces, she tracks her development as a writer and discusses the “lyric essay”—a form as old as Seneca that prioritizes imagery over narrative. These innovative and introspective essays, ideal for fans of Anne Fadiman, showcase the interplay of structure and content. (Coming out on July 13th from the University of Michigan Press. My first review for Shelf Awareness.)

 

Sanctuary by Emily Rapp Black: A continuation of The Still Point of the Turning World, about the author’s son Ronan, who died of Tay-Sachs disease at age three. In the months surrounding his death, she split from her husband and raced into another relationship that led to her daughter, Charlie. Rapp Black questions the sorts of words she got branded with: “brave,” “resilient.” Sanctuary is full of allusions and flashbacks, threading life’s disparate parts into a chaotic tapestry. It’s measured and wrought, taming fire into light and warmth.

 

 

Poetry

Pilgrim Bell by Kaveh Akbar: An Iranian American poet imparts the experience of being torn between cultures and languages, as well as between religion and doubt, in this gorgeous collection of confessional verse. Food, plants, animals, and the body supply the book’s imagery. Wordplay and startling juxtapositions lend lightness to a wistful, intimate collection that seeks belonging and belief. (Coming out on August 3rd from Graywolf Press. Reviewed for Shelf Awareness.)

 

Eat or We Both Starve by Victoria Kennefick: In this audacious debut collection, the body is presented as a battleground: for the brain cancer that takes the poet’s father; for disordered eating that entwines with mummy issues; for the restructuring of pregnancy. Families break apart and fuse into new formations. Cannibalism and famine metaphors dredge up emotional states and religious doctrines. There’s a pleasingly morbid cast to the book, but it also has its lighter moments. Rich with imagery and alliteration, this is just my kind of poetry.

 

What are some of the best books you’ve read so far this year?
What 2021 releases do I need to catch up on right away?

Review Book Catch-Up: Dennis, Galloway, Leland-St. John and Sampson

Capsule reviews today, of four books I am inexcusably late in reviewing. I have a record of personal experience with species reintroductions, a memoir about living among reindeer herders in the far north of Norway, a set of elegiac poems, and a biography of a Victorian woman poet who struggled with poor health for most of her life.

 

Restoring the Wild: Sixty Years of Rewilding Our Skies, Woods and Waterways by Roy Dennis

Rewilding is a big buzz word in current nature and environmental writing. Few could be said to have played as major a role in the UK’s successful species reintroduction projects as Roy Dennis, who has been involved with the RSPB and other key organizations since the late 1950s. He trained as a warden at two of the country’s most famous bird observatories, Lundy Island and Fair Isle. Most of his later work was to focus on birds: white-tailed eagles, red kites, and ospreys. Some of these projects extended into continental Europe. He also writes about the special challenges posed by mammal reintroductions; beavers get a chapter of their own. Every initiative is described in exhaustive detail, full of names and dates, whereas I would have been okay with an overview. This feels like more of an insider’s history rather than a layman’s introduction. I have popped it on my husband’s bedside table in hopes that, with his degree in wildlife conservation, he’ll be more interested in the nitty-gritty.

Favourite lines:

“Tenacity and a long view to the future are important in wildlife conservation.”

“for every successful project that gets the go-ahead, there are others into which people put great effort but which then run up against problems.”

With thanks to William Collins for the free copy for review.

 

Dálvi: Six Years in the Arctic Tundra by Laura Galloway

The title is the word for winter in the Northern Sámi language. Galloway, a journalist, traded in New York City for Arctic Norway after a) a DNA test told her that she had Sámi blood and b) she met and fell for Áilu, a reindeer herder, at a wedding. She enrolled in an intensive language learning course at university level and got used to some major cultural changes: animals were co-workers here rather than pets (like the two cats she brought with her); communal meals and drawn-out goodbyes were not the done thing; and shamans were still active (one helped them find a key she lost). Footwear neatly sums up the difference. The Prada heels she brought “just in case” ended up serving as hammers; instead, she helped Áilu’s mother make reindeer skins into boots. Two factors undermined my enjoyment: Alternating chapters about her unhappy upbringing in Indiana don’t add much of interest, and, after her relationship with Áilu ends, the book feels aimless. However, I appreciated her words about DNA not defining you, and family being what you make it.

With thanks to Atlantic Books for the free copy for review.

 

A Raga for George Harrison by Sharmagne Leland St.-John (2020)

Native American poet Sharmagne Leland St.-John’s fifth collection is a nostalgic and bittersweet look at people and places from one’s past. There are multiple elegies for public figures – everyone from Janis Joplin to Virginia Woolf – as well as for some who aren’t household names but have important stories that should be commemorated, like Hector Pieterson, a 12-year-old boy killed during the Soweto Uprising for protesting enforced teaching of Afrikaans in South Africa in 1976. Many of the elegies are presented as songs. Personal sources of sadness, such as a stillbirth, disagreements with a daughter, and ageing, weigh as heavily as tragic world events.

Rhyming and alliteration create inviting rhythms throughout the book, and details of colour and fashion animate poems like “La Kalima.” Leland St.-John remembers meeting street children in Mexico, while bamboo calls to mind time spent in Japan. “Promised Land” is an ironic account of land being seized from natives and people of colour. I especially liked “Things I Would Have Given to My Mother Had She Asked” (some literal and some more abstract), which opens “A piece of my liberal mind. 5 more minutes of my time”, and the sombre “Cat’s Cradle” (“Drenched starlings perch on a cat’s cradle of telephone wires”).

You can read “I Said Coffee” and a few more of her poems online.

With thanks to the author for sending a free e-copy for review.

 

Two-Way Mirror: The Life of Elizabeth Barrett Browning by Fiona Sampson

Coming in at under 260 pages, this isn’t your standard comprehensive biography. Sampson instead describes it as a “portrait,” one that takes up the structure of EBB’s nine-book epic poem, Aurora Leigh, and is concerned with themes of identity and the framing of stories. Elizabeth, as she is cosily called throughout the book, wrote poems that lend themselves to autobiographical interpretation – “her body of work creates a kind of looking glass in which, dimly, we make out the person who wrote it,” Sampson asserts.

Nicknamed “Ba,” Elizabeth was born in 1806 and brought up with 11 younger siblings at a Herefordshire estate, Hope End. Her father, Edward, had been born in Jamaica and the family fortune was based on sugar – and slavery. Sampson makes much of this inherited guilt, and also places an emphasis on EBB’s lifelong ill health, which involved headaches, back and side pain, and depression. She also suffered from respiratory complaints. The modern medically minded reader tries to come up with a concrete diagnosis. Tardive dystonia? Post-viral syndrome? The author offers many potential explanations, and notes that her subject was the very type of the Victorian female invalid. She would also suffer from miscarriages, but had one son, Pen. The Brownings were in the unusual position of the wife being the more famous partner.

Sampson draws heavily on correspondence and earnestly interrogates scenes and remembrances, but her use of the present tense is a bit odd for a historical narrative, and I found my casual curiosity about the Brownings wasn’t enough to sustain my interest. However, this did make me eager to try more of EBB’s poetry. I wonder if I still have that copy of Sonnets from the Portuguese in a box in the States?

Favourite lines:

“Within the continual process of reputation-making and remaking that is literary history, Elizabeth Barrett Browning remains a bellwether for the rising and sinking stock of women writers. … Elizabeth dramatizes the two-way creation of every writing self, from without and from within. That the life of the body both enables and limits the life of the mind is the paradox of the thinking self.”

With thanks to Profile Books for the free copy for review.

 

Would you be interested in reading one or more of these?

Review Book Catch-Up: Ante, Evans, Foster and White

Today I have a book of poems about the Filipinx experience in the UK, a collection of short stories reflecting on racial injustice, a monograph on a bird that spells summer for many of us, and a biographical investigation into a little-understood medical condition.

 

Antiemetic for Homesickness by Romalyn Ante

I was drawn to this debut collection by the terrific title and cover, but also by the accolades it received: it was on the Dylan Thomas Prize longlist and the Jhalak Prize shortlist. I hope we’ll see it on the Sunday Times Young Writer of the Year Award shortlist, too. Ante grew up in the Philippines but at age 16 joined her mother in the UK, where she had moved years before to work as a nurse in the NHS. She has since followed in her mother’s footsteps as a nurse – indeed, overseas Filipinx workers (Jamaicans, too) are a mainstay of the NHS.

Ante remembers the years when her mother was absent but promised to send for the rest of the family soon: “You said all I needed to do was to sleep and before I knew it, / you’d be back. But I woke to the rice that needed rinsing, / my siblings’ school uniforms that needed ironing.” The medical profession as a family legacy and noble calling is a strong element of these poems, especially in “Invisible Women,” an ode to the “goddesses of caring and tending” who walk the halls of any hospital. Hard work is a matter of survival, and family – whether physically present or not – bolsters weary souls. A series of short, untitled poems are presented as tape recordings made for her mother.

Food is inextricably entwined with memory (reminding me of Nina Mingya Powles’s approach in Tiny Moons) and provides some of the standout metaphors, especially in “Patis” and “Ode to a Pot Noodle.” Ante uses a lot of alliteration and adapts various forms. I especially liked “Tagay!”, a traditional drinking song, and “Mateo,” printed in the shape of a pound sign. The nuanced look at the immigrant experience reminded me of Jenny Xie’s Eye Level. Movement entails losses as well as benefits. The focus on the Filipinx experience also made me think of America Is Not the Heart. My favourite single poem was “The Making of a Smuggler,” which opens “Wherever we travel, we carry / the whole country with us – // our rice terraces are folded garments, / we have pillars of trees, a rainforest // on a hairbrush.”

Favourite lines:

“Gone are the nights he steals / the moon with a mango picker / and swaps it for her pocket mirror”

“The yellow admission papers in my hands escaped / flustering at my face into a flight of orioles.”

“I am halved in order to be whole – / I rebuild by leaving / everything I love.”

With thanks to Chatto & Windus for the free copy for review.

 

The Office of Historical Corrections by Danielle Evans

To boil these six stories and a novella down to the topic of race in America risks painting them as solemn or strident – more concerned with meaning than with art – when the truth is that they are playful and propulsive even though they keep cycling back to bereavement and injustice. Several of the protagonists are young Black women coming to terms with a loss.

In “Happily Ever After,” Lyssa works in the gift shop of a Titanic replica and is cast as an extra in a pop star’s music video. Mythical sea monsters are contrasted with the real dangers of her life, like cancer and racism. “Anything Could Disappear” was a favourite of mine, though it begins with that unlikely scenario of a single woman acquiring a baby as if by magic. What starts off as a burden becomes a bond she can’t bear to let go. A family is determined to clear the name of their falsely imprisoned ancestor in “Alcatraz.” In “Richard of York Gave Battle in Vain” (a mnemonic for the colours of the rainbow), photojournalist Rena is wary about attending the wedding of a friend she met when their plane was detained in Africa some years ago. The only wedding she’s been in is her sister’s, which ended badly.

Mistakes and deceit seem to follow these characters. In the title novella that closes the book, Cassie and her colleagues combat fake news, going around putting correction labels on plaques that whitewash history. When she and her former colleague meet up in Wisconsin to find the truth behind a complex correction case, a clash with a white supremacist group quickly turns pedantry into a matter of life and death. The story I’d heard the most about beforehand was “Boys Go to Jupiter,” about a college girl who dons a Confederate flag bikini, not caring what message it sends to others in her dorm. It turns out she has history with a Black family, but has chosen to airbrush this experience out of her life.

There was only one story I didn’t care for, “Why Won’t Women Just Say What They Want,” about a celebrity who turns apologizing into performance art. Overall, this is a very strong collection I would recommend to readers of Brit Bennett and Raven Leilani, with some stories also reminding me of recent work by Curtis Sittenfeld and Mary South. I’ll be sure to seek out Evans’s previous book (also short stories), too.

With thanks to Picador for the proof copy for review.

 

The Screaming Sky by Charles Foster

The other week I was volunteering at our local community garden and looked up to see a dozen common swifts wheeling over the Kennet & Avon canal and picking off insects among the treetops. I hope this fellow Foster (for whom my husband was once confused on a nature conference attendee list) would be proud of me for pausing to gaze at the birds for a while. My impression of the author is as a misanthropic eccentric. A Renaissance man as well versed in law and theology as he is in natural history, he’s obsessed with swifts and ashamed of his own species: for looking down at their feet when they could be watching the skies; for the “pathological tidiness” that leaves swifts and so many other creatures no place to live.

The obsession began when he was eight years old and someone brought him a dead swift fledgling for his taxidermy hobby. Ever since, he’s dated the summer by their arrival. “It is always summer for them,” though, as his opening line has it. This monograph is structured chronologically. Much like Tim Dee does in Greenery, Foster follows the birds for a year: from their winter territory in Africa to the edges of Europe in spring and then to his very own Oxford street in high summer. When they leave, he’s bereft and ready to book a flight back to Africa.

Along the way, Foster delivers heaps of information: the fossil evidence of swifts, how they know where to migrate (we have various theories but don’t really know), their nesting habits and lifespan, and the typical fates of those individuals that don’t survive. But, thumbing his nose at his “ex-friend” (a closed-minded biologist he repeatedly, and delightfully, rails against), he refuses to stick to a just-the-facts approach. Acknowledging the risks of anthropomorphizing, he speaks of swifts as symbols of aspiration, of life lived with intensity. He believes that we can understand animal emotions analogously through our own, so that, inappropriate as such words might seem, we can talk about what birds hope and plan for. He scorns reductive ecosystem services lingo that defines creatures by what we get out of them.

Also like Dee, Foster quotes frequently from poetry. His prose is full of sharp turns of phrase and moments of whimsy and made me eager to try more of his work (I know the most about but have not yet read Being a Beast).

Swifts know the roar of lions better than the roar of the M25, the piping of hornbills better than the Nunc Dimittis of parish Evensong … Are memories of our eaves spiralling high above the Gulf of Guinea? … They don’t seem to prevaricate. One moment they’re there, the next they’re off, diving straight into the journey. It’s the way we should run into cold water.

As I’ve found with a number of Little Toller releases now (On Silbury Hill, Snow, Landfill), knowledge meets passion to create a book that could make an aficionado of the most casual of readers. Towards the close I was also reminded of Richard Smyth’s An Indifference of Birds: “When Homo sapiens has gone there will be lots of ideal swift holes in the decaying buildings we’ll leave behind.” It’s comforting to think of natural cycles continuing after we’re gone … but let’s start making the space for them now. Jonathan Pomroy’s black-and-white illustrations of swift behaviour only add to this short book’s charms.

With thanks to Little Toller Books for the free copy for review.

 

Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White

Like Suzanne O’Sullivan’s books (most recently, The Sleeping Beauties), this is presented as an investigation into a medical mystery. White, a Stanford Medicine journalist, focuses on one family that has been indelibly changed by chronic fatigue syndrome – now linked with myalgic encephalomyelitis and termed ME/CFS for short. Whitney Dafoe was a world traveller and promising photographer before, in 2010, a diagnosis of ME/CFS explained his exhaustion and gastrointestinal problems. By the time White first met the family in 2016, the thirtysomething was bedbound in his parents’ home with a feeding tube, only able to communicate via gestures and rearranging Scrabble tiles. He couldn’t bear loud noises, or to be touched. At times he was nearly comatose.

Whitney’s father, Ron Davis, is a Stanford geneticist whose research has contributed to the Human Genome Project. He has devoted himself to studying ME/CFS, which affects 20 million people worldwide yet receives little research funding; he calls it “the last major disease we know nothing about.” Testing his son’s blood, he found a problem with the citric acid cycle that produces ATP, essential fuel for the body’s cells – proof that there was a physiological reason for Whitney’s condition. Frustratingly, though, a Stanford colleague who examined Whitney prescribed a psychological intervention. This is in line with the current standard of care for ME/CFS: a graded exercise regime (nigh on impossible for someone who can’t get out of bed) and cognitive behavioural therapy.

White delves into Whitney’s past, looking for clues to what could have triggered his illness (having mono in high school? a parasite he picked up in India?). She also goes back to the mid-1980s to consider the Lake Tahoe outbreak of ME/CFS, whose victims “looked too healthy to be sick and were repeatedly disbelieved.” The media called it “yuppie flu,” downplaying the extreme fatigue involved. White also meets Laura Hillenbrand, author of Seabiscuit, who suffers from ME/CFS and managed to write her bestselling books from bed. Like Whitney, she only has a certain allotment of energy and mustn’t use it up too fast.

  • A neat connection: Stephanie Land, author of Maid, was Whitney’s ex-girlfriend when he was 19 and living in Alaska; she wrote a Longreads article about their relationship.
  • The title is from a Flaming Lips lyric and expresses Whitney’s trust in his dad’s ability to cure him; the U.S. title is The Puzzle Solver and the working title was The Invisible Patient.

With thanks to Atlantic Books for the free copy for review.

 

Would you be interested in reading one or more of these?

The Inevitable: Dispatches on the Right to Die by Katie Engelhart

Why, she wanted to know, was I so interested in the subject?

“Why isn’t everyone?” I asked.

The fact that I read a lot more books about death than the average person is something I attribute not to some morbid curiosity, but to pragmatism. As the title of Canadian reporter and documentary filmmaker Katie Engelhart’s book makes clear, this is the one subject none of us can avoid indefinitely, so why not learn about and understand it as much as possible? The Inevitable focuses on the controversial matter of assisted dying, also known as assisted suicide, euthanasia, or physician-assisted death. It’s a topic that’s already come up in my reading a couple of times this year: in the Dutch context of That One Patient by Ellen de Visser, and as a key part of the narrative in Darke Matter by Rick Gekoski.

Engelhart spends time with doctors and patients who are caught up in the assisted dying argument, chiefly in Western Europe and the United States. Ten states plus Washington, D.C. have assisted dying laws, sparked by Oregon’s Death with Dignity Act in 1994. In California, the author follows Dr. Lonny Shavelson for a month, observing all the meticulous regulations surrounded a physician-assisted death: patients with a terminal diagnosis and less than six months to live have to complete multiple forms, give many signatures, deliver oral testimony, and be able to drink the fatal concoction by themselves (whereas in other countries doctors can administer lethal injections). And if, when the time comes, a patient is too far gone to give spoken consent, the procedure is cancelled.

Other chapters consider specific cases that are not generally covered by current legislation but can drive people to seek assisted suicide: the ravages of old age, chronic degenerative illnesses, dementia, and severe mental illness. Each of these is given its own long chapter, like an extended magazine profile.

  • Meet Avril Henry, a former Exeter University professor in her eighties, now living alone with a failing body but no specific diagnosis that would qualify her for AD. Pain has long since outweighed pleasure in her life, so she illegally imports Nembutal from a veterinary supplier in Mexico and makes a careful plan for what will happen with her body, home, and possessions after she takes the drug in the bathtub.
  • Meet Maia Calloway, a 39-year-old former filmmaker confined to a wheelchair by multiple sclerosis. Her medicines cost $65,000 a year, not all covered by Medicare, and she can no longer rely on the patience of her boyfriend, who acts as her carer. She decides to raise the money to travel from Taos to a Swiss assisted dying clinic.
  • Meet Debra, a 65-year-old widow so rapidly declining with dementia that she knows she has to make her arrangements at once. She contacts the Final Exit Network, which gives advice and equipment (e.g. a nitrogen tank) that can make a death look unexplained or like a standard suicide.
  • Meet Adam, a 27-year-old in daily distress from OCD, anxiety, and depersonalization disorder. Though he’s lobbied for the inclusion of mental illness, he doesn’t qualify for AD under Canada’s laws. In 2017 he starts a Facebook livestream from a hotel room, intending to take poison off-screen. He loses his nerve this time, but is determined to try again.

These stories are so wrenching, but so compassionately told. Engelhart explores the nuances of each situation, crafting expert portraits of suffering people and the medical professionals who seek to help them, and adding much in the way of valuable context. Hers is a voice of reason and empathy. She mostly stays in the background, as befits a journalist, but occasionally emotional responses or skepticism come through – Exit International’s Philip Nitschke, vilified as a “Dr. Death” like Jack Kevorkian, is too much of a maverick for her.

And while her sympathy for the AD cause is evident, she also presents opposing arguments: from hospice doctors, from those afraid that the disabled will be pushed into assisted suicide to free up resources, from the family members of her subjects, and from those who have witnessed abuses of the system. There are those who frame this as a question of rights, and others who recognize a rare privilege; some who scorn the notion of escape, and others who speak of dignity and the kindness one would show a dying pet. The book is a vital contribution to an ongoing debate, with human stories at its heart.


With thanks to Atlantic Books for the free copy for review. The Inevitable was published in the UK on March 11th and is available from St. Martin’s Press in the USA.

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.