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:
- Heal Me by Julia Buckley
- Bodies of Water by V. H. Leslie
- My Year of Rest and Relaxation by Ottessa Moshfegh
With thanks to Penned in the Margins for the free copy for review.
I should have another batch of summer books read and reviewed by Friday. To fill in until then, I’ve resuscitated a recurring post template that I haven’t used in over three years, looking at the random searches that have led people to my blog. (Previously surveyed in May 2016, October 2016 and June 2017.)
I keep a record of the most interesting or bizarre blog searches that show up on my dashboard. Some recent favorites are below. I may not have the dirt on a new Donna Tartt release, but some of those who came with an inquiring mind will have found answers to their questions on my site.
(Spelling and punctuation are unedited throughout!)
June 23: heart surgery vs brain surgery, elderberry cordial nancy Mitford
September 8: eve schaub rag rug
October 9: i hate elena ferrante
December 20: shaun bythell partner
December 27: philip carey leg
February 8: julia buckley journalist friend with a witchdoctor
March 30: was mel love with sharon animators
April 17: parker fiske – eleanor roosevelt’s cousin
May 31: is donna tartt writing another novel after the goldfinch
September 10: reservoir 13 who did it
October 22: sample inscription in cookbook for a bride
March 19: the heart’s invisible furies spoilers, culling books
January 19: vikram paralkar night theatre stinks, is megan phelps roper a jehovahs witness
March 30: miochel faber interview, did shaun bythell marry jess ica fox, why did mary give thatcher a gift in the novel unsheltered
April 17: bitter orange symbolism, books under 50 pages, cystic fibrosis stevenson helen, nuts in may louis macneice
April 28: essays on comparing the novels empire falls by richard russo and cat’s eye by margaret wood
July 6: christianne ritter aurhor what became of her and her husband
Lots of curiosity about Shaun Bythell’s romantic history – my review of The Diary of a Bookseller continues to be one of my most-viewed posts. I think my favorite search, though, is “i hate elena ferrante” (hate is too strong a word, but I do remain indifferent to her charms).
I regularly check my spam folder because, every once in a while, a regular commenter’s message goes astray there and I’d hate to miss anything genuine.
In the last month I’ve noticed hundreds of spam comments on my blog, all containing identical Spanish-language text (“Muchas gracias. ?Como puedo iniciar sesion?”) and usually appearing on one of four particular posts.
Any ideas about how I can get the Spanish spam to go away?
On Tuesday the longlist for the 2019 Wellcome Book Prize will be announced. For the third year in a row I’m running a shadow panel, and it’s composed of the same four wonderful book bloggers who joined me last year: Paul Cheney of Halfman, Halfbook, Annabel Gaskell of Annabookbel, Clare Rowland of A Little Blog of Books, and Dr. Laura Tisdall.
This year we’re going to do things slightly differently: we plan to split up the longlist, taking two to three titles each, so that between us we will have read them all and can announce our own preferred shortlist before the official shortlist is announced in March. At that point we’ll catch up by (re)reading the six shortlisted books, each reviewing the ones we haven’t already. Essentially, I’m adding an extra stage of shadow panel judging, simply because I can. I hope it will be fun – and also less onerous, in that we should get a leg-up on the shortlist and not have to read all six books in March‒April, which has proved to be a challenge in the past.
My Wellcome Prize hopefuls are all the fiction or nonfiction titles I’ve read on a medical theme that were published in the UK in calendar year 2018. I have put asterisks beside the 12 books in this post that I predict for the longlist. (The combination of wishful thinking and likelihood means that these are not exclusively my personal favorites.)
Below is a list of the books I’ve already featured on the blog in some way, with links to my coverage and a few-word summary of their relevance.
Gross Anatomy by Mara Altman: Female body woes
*Beneath the Skin: Great Writers on the Body: Essays on organs
*All that Remains by Sue Black: Forensic anthropology
Everything Happens for a Reason by Kate Bowler: Living with advanced cancer
Heal Me by Julia Buckley: Tackling chronic pain
*The Unmapped Mind by Christian Donlan: Adjusting to life with MS
From Here to Eternity by Caitlin Doughty: Funerary rites around the world
This Really Isn’t About You by Jean Hannah Edelstein: A genetic disease in the family
Natural Causes by Barbara Ehrenreich: Questioning the wellness culture
On Smaller Dogs and Larger Life Questions by Kate Figes: Pondering breast cancer
Shapeshifters by Gavin Francis: Instances of bodily change
The Reading Cure by Laura Freeman: Healing from an eating disorder
Nine Pints by Rose George: The story of blood
Waiting for the Last Bus by Richard Holloway: Ageing and death
*Heart: A History by Sandeep Jauhar: Heart disease and treatments
Sick by Porochista Khakpour: Chronic Lyme disease
Human Errors by Nathan Lents: Flawed bodies; evolutionary adaptations
Skybound by Rebecca Loncraine: Breast cancer; flying lessons
Amateur by Thomas Page McBee: Memoir of F2M transformation
*Face to Face by Jim McCaul: Tales of facial surgery
*Somebody I Used to Know by Wendy Mitchell: A firsthand account of early Alzheimer’s
*That Was When People Started to Worry by Nancy Tucker: Mental illness from the inside
*The Language of Kindness by Christie Watson: Nursing as a vocation
Little by Edward Carey: Anatomical models in wax (thanks to Clare for the reminder!)
Orchid & the Wasp by Caoilinn Hughes: Non-epileptic seizures
*The Winter Soldier by Daniel Mason: Neurology, surgery during WWI
The Way of All Flesh by Ambrose Parry: Medicine in 1840s Edinburgh
Other eligible books that I have read but not happened to mention on the blog:
In Shock by Rana Awdish: The doctor became the patient when Awdish, seven months pregnant, was rushed into emergency surgery with excruciating pain due to severe hemorrhaging into the space around her liver, later explained by a ruptured tumor. Having experienced brusque, cursory treatment, even from colleagues at her Detroit-area hospital, she was convinced that doctors needed to do better. This memoir is a gripping story of her own medical journey and a fervent plea for compassion from medical professionals.
Doctor by Andrew Bomback: Part of the Bloomsbury Object Lessons series, this is a wide-ranging look at what it’s like to be a doctor. Bomback is a kidney specialist; his wife is also a doctor, and his father, fast approaching retirement, is the kind of old-fashioned, reassuring pediatrician who knows everything. Even the author’s young daughter likes playing with a stethoscope and deciding what’s wrong with her dolls. In a sense, then, Bomback uses fragments of family memoir to compare the past, present and likely future of medicine.
A Moment of Grace by Patrick Dillon [skimmed]: A touching short memoir of the last year of his wife Nicola Thorold’s life, in which she battled acute myeloid leukemia. Dillon doesn’t shy away from the pain and difficulties, but is also able to summon up some gratitude.
Get Well Soon: Adventures in Alternative Healthcare by Nick Duerden: British journalist Nick Duerden had severe post-viral fatigue after a run-in with possible avian flu in 2009 and was falsely diagnosed with ME / CFS. He spent a year wholeheartedly investigating alternative therapies, including yoga, massage, mindfulness and meditation, visualization, talk therapy and more. He never comes across as bitter or sorry for himself. Instead, he considered fatigue a fact of his new life and asked what he could do about it. So this ends up being quite a pleasant amble through the options, some of them more bizarre than others.
*Sight by Jessie Greengrass [skimmed]: I wanted to enjoy this, but ended up frustrated. As a set of themes (losing a parent, choosing motherhood, the ways in which medical science has learned to look into human bodies and minds), it’s appealing; as a novel, it’s off-putting. Had this been presented as a set of autobiographical essays, perhaps I would have loved it. But instead it’s in the coy autofiction mold where you know the author has pulled some observations straight from life, gussied up others, and then, in this case, thrown in a bunch of irrelevant medical material dredged up during research at the Wellcome Library.
*Brainstorm: Detective Stories From the World of Neurology by Suzanne O’Sullivan: Epilepsy affects 600,000 people in the UK and 50 million worldwide, so it’s an important condition to know about. It is fascinating to see the range of behaviors seizures can be associated with. The guesswork is in determining precisely what is going wrong in the brain, and where, as well as how medicines or surgery could address the fault. “There are still far more unknowns than knowns where the brain is concerned,” O’Sullivan writes; “The brain has a mind of its own,” she wryly adds later on. (O’Sullivan won the Prize in 2016 for It’s All in Your Head.)
I’m also currently reading and enjoying two witty medical books, The Mystery of the Exploding Teeth and Other Curiosities from the History of Medicine by Thomas Morris, and Chicken Unga Fever by Phil Whitaker, his collected New Statesman columns on being a GP.
Four additional books I have not read but think might have a chance of making the longlist:
Primate Change: How the World We Made Is Remaking Us by Vybarr Cregan-Reid
The Beautiful Cure: Harnessing Your Body’s Natural Defences by Daniel M. Davis
Because I Come from a Crazy Family: The Making of a Psychiatrist by Edward M. Hallowell
*She Has Her Mother’s Laugh: The Powers, Perversions, and Potential of Heredity by Carl Zimmer
Look out for the announcement of the longlist on Tuesday afternoon! I’ll report back, perhaps on Wednesday, with some reactions and the shadow panel’s reviewing strategy.
Have you read, or are you interested in, any of these books?
Can you think of other 2018 releases that might be eligible for the Wellcome Book Prize?
Across my four best-of posts (Nonfiction was on Wednesday and Fiction on Thursday; Backlist reads are coming up tomorrow), I will have spotlighted roughly the top 20% of my year’s reading. The 15 runners-up below – 5 fiction and 10 nonfiction – are in alphabetical order by author. The ones marked with an asterisk are my Best 2018 Books You Probably Never Heard Of (Unless You Heard about Them from Me!).
*Frieda by Annabel Abbs: If you rely only on the words of D.H. Lawrence, you’d think Frieda was lucky to shed a dull family life and embark on an exciting set of bohemian travels with him as he built his name as a writer; Abbs adds nuance to that picture by revealing just how much Frieda was giving up, and the sorrow she left behind her. Frieda’s determination to live according to her own rules makes her a captivating character.
A Ladder to the Sky by John Boyne: A delicious piece of literary suspense with a Tom Ripley-like hero you’ll love to hate: Maurice Swift, who wants nothing more than to be a writer but doesn’t have any ideas of his own, so steals them from other people. I loved how we see this character from several outside points of view before getting Maurice’s own perspective; by this point we know enough to understand just how unreliable a narrator he is.
The Overstory by Richard Powers: A sprawling novel about regular people who through various unpredictable routes become so devoted to trees that they turn to acts, large and small, of civil disobedience to protest the clear-cutting of everything from suburban gardens to redwood forests. I admired pretty much every sentence, whether it’s expository or prophetic.
You Think It, I’ll Say It by Curtis Sittenfeld: Sittenfeld describes families and romantic relationships expertly, in prose so deliciously smooth it slides right down. These 11 stories are about marriage, parenting, authenticity, celebrity and social media in Trump’s America. Overall, this is a whip-smart, current and relatable book, ideal for readers who don’t think they like short stories.
*Meet Me at the Museum by Anne Youngson: A charming, bittersweet novel composed entirely of the letters that pass between Tina Hopgood, a 60-year-old farmer’s wife in East Anglia, and Anders Larsen, a curator at the Silkeborg Museum in Denmark. It’s a novel about second chances in the second half of life, and has an open but hopeful ending. I found it very touching and wish it hadn’t been given the women’s fiction treatment.
Rough Beauty: Forty Seasons of Mountain Living by Karen Auvinen: An excellent memoir that will have broad appeal with its themes of domestic violence, illness, grief, travel, wilderness, solitude, pets, wildlife, and relationships. A great example of how unchronological autobiographical essays can together build a picture of a life.
*Heal Me: In Search of a Cure by Julia Buckley: Buckley takes readers along on a rollercoaster ride of new treatment ideas and periodically dashed hopes during four years of chronic pain. I was morbidly fascinated with this story, which is so bizarre and eventful that it reads like a great novel.
*This Really Isn’t About You by Jean Hannah Edelstein: A wry, bittersweet look at the unpredictability of life as an idealistic young woman in the world’s major cities. Another great example of life writing that’s not comprehensive or strictly chronological yet gives a clear sense of the self in the context of a family and in the face of an uncertain future.
*The Pull of the River: Tales of Escape and Adventure on Britain’s Waterways by Matt Gaw: This jolly yet reflective book traces canoe trips down Britain’s rivers, a quest to (re)discover the country by sensing the currents of history and escaping to the edge of danger. Gaw’s expressive writing renders even rubbish- and sewage-strewn landscapes beautiful.
The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson: A delightful read that successfully combines many genres – biography, true crime, ornithology, history, travel and memoir – to tell the story of an audacious heist of rare bird skins from the Natural History Museum at Tring in 2009. This is the very best sort of nonfiction: wide-ranging, intelligent and gripping.
*No One Tells You This by Glynnis MacNicol: There was a lot of appeal for me in how MacNicol sets out her 40th year as an adventure into the unknown. She is daring and candid in examining her preconceptions and asking what she really wants from her life. And she tells a darn good story: I read this much faster than I generally do with a memoir.
The Library Book by Susan Orlean: This is really two books in one. The first is a record of the devastating fire at the Los Angeles Central Library on April 29, 1986 and how the city and library service recovered. The second is a paean to libraries in general: what they offer to society, and how they work, in a digital age. Sure to appeal to any book-lover.
Help Me!: One Woman’s Quest to Find Out if Self-Help Really Can Change Her Life by Marianne Power: I have a particular weakness for year-challenge books, and Power’s is written in an easy, chatty style, as if Bridget Jones had given over her diary to testing self-help books for 16 months. Help Me! is self-deprecating and relatable, with some sweary Irish swagger thrown in. I can recommend it to self-help junkies and skeptics alike.
Mrs Gaskell & Me: Two Women, Two Love Stories, Two Centuries Apart by Nell Stevens: Stevens has a light touch, and flits between Gaskell’s story and her own in alternating chapters. This is a whimsical, sentimental, wry book that will ring true for anyone who’s ever been fixated on an idea or put too much stock in a relationship that failed to thrive.
The Language of Kindness: A Nurse’s Story by Christie Watson: Watson presents her book as a roughly chronological tour through the stages of nursing – from pediatrics through to elderly care and the tending to dead bodies – but also through her own career. With its message of empathy for suffering and vulnerable humanity, it’s a book that anyone and everyone should read.
Coming tomorrow: My best backlist reads of the year.
Julia Buckley can pinpoint the very moment when her battle with chronic pain began: it was a Tuesday morning in May 2012, and she was reaching across her desk for a cold cup of coffee. Although she had some underlying health issues, the “fire ants” down her arm and “carving knife” in her armpit? These were new. From there it just got worse: neck and back pain, swollen legs, and agonizing periods. Heal Me is a record of four years of chronic pain and the search for something, anything to take the pain away. “I couldn’t say no – that was a forbidden word on my journey. You never know who’s going to be your saviour.”
Having exhausted the conventional therapies available privately and via the NHS, most of which focus on cognitive behavioral therapy and coping strategies, Buckley quit work and registered as disabled. Ultimately she had to acknowledge that forces beyond the physiological might be at work. Despite her skepticism, she began to seek out alternative practitioners in her worldwide quest for a cure. Potential saviors included a guru in Vienna, traditional healers in Bali and South Africa, a witch doctor in Haiti, an herbalist in China, and a miracle worker in Brazil. She went everywhere from Colorado Springs (for medical marijuana) to Lourdes (to be baptized in the famous grotto). You know she was truly desperate when you read about her bathing in the blood and viscera of a sacrificial chicken.
Now the travel editor of the Independent and Evening Standard, Buckley captures all these destinations and encounters in vivid detail, taking readers along on her rollercoaster ride of new treatment ideas and periodically dashed hopes. She is especially incisive in her accounting of doctors’ interactions with her. All too often she felt like a statistic or a diagnosis instead of a person, and sensed that her (usually male) doctors dismissed her as a stereotypically hysterical woman. Fat shaming came into the equation, too. Brief bursts of compassion, wherever they came from, made all the difference.
I was morbidly fascinated with this story, which is so bizarre and eventful that it reads like a great novel. I’ll be cheering it on in next year’s Wellcome Book Prize race.
Heal Me: In Search of a Cure is published today, January 25th, by Weidenfeld & Nicolson. My thanks to the publisher for a free copy for review.
Julia graciously agreed to take part in a Q&A over e-mail. We talked about invisible disabilities, the gendered treatment of pain, and whether she believes in miracles.
“I spent a day at the Paralympic stadium with tens of thousands cheering on equality, but when it was time to go home, nobody wanted to give me a seat on the Central Line. I was, I swiftly realised, the wrong kind of disabled.”
Yours was largely an invisible disability. How can the general public be made more aware of these?
I feel like things are very, very gradually moving forward – speaking as a journalist, I know that stories about invisible disabilities do very well, and I think as we all try to be more “on” things and “woke” awareness is growing. But people are still cynical – Heathrow and Gatwick now have invisible disability lanyards for travellers and someone I was interviewing about it said “How do I know the person isn’t inventing it?” I think the media has a huge part to play in raising awareness, as do things like books (cough cough). And when trains have signs saying things like “be aware that not all disabilities are visible” on their priority seats, I think that’s a step forward. Openness helps, too, if people are comfortable about it – I’m a huge believer in oversharing.
“I wondered whether it was a peculiarly female trait to blame oneself when a treatment fails.”
You make a strong case for the treatment of chronic pain being gendered, and your chapter epigraphs, many from women writers who were chronic pain or mental health patients, back this up. There’s even a name for this phenomenon: Yentl Syndrome. Can you tell us a little more about that? What did you do to push back against it?
Yentl Syndrome is the studied phenomenon that male doctors are un/consciously sexist in their dealings with female patients – with regards to pain, they’re twice as likely to ascribe female pain to psychological reasons and half as likely to give them adequate painkillers. In the US, women have to cycle through 12 doctors, on average, before they find the one to treat their pain adequately. There are equally shocking stats if you look at race and class, too.
I did absolutely nothing to push back against it when I was being treated, to be honest, because I didn’t recognise what was going on, had never heard of Yentl Syndrome and thought it was my problem, not theirs. It was really only when I met Thabiso, my sangoma in South Africa, that I felt the scales lift from my eyes about what had been going on. I make up for it now, though – I recently explained to a GP what it was, and suggested he be tested for it (long story, but we were on the phone and he was being incredibly patronising and not letting me speak). He hung up on me.
“In my head I added, I don’t care what they do to me, as long as it helps the pain.”
Meatloaf sang, “I would do anything for love, but I won’t do that.” Can you think of anything you wouldn’t have done in the search for a cure?
Well, I refused a spiritual surgery from John of God – I would have had the medical clamp up my nose or happily been cut into, but I was phobic about having my eyeball scraped – I had visions of Un Chien Andalou. So I had said repeatedly I was up for the other stuff but wouldn’t do the eye-scraping, and was told that probably meant I’d get the eye-scraping so I should go for the “invisible” surgery instead. But I can’t think of anything else I wouldn’t have done. The whole point, for me, was that if I didn’t throw myself into something completely, if I didn’t get better I’d never know if that was the treatment not working or my fault. Equally, my life was worthless to me – I knew I would probably be dead if I didn’t find an answer, so I didn’t have anything to lose.
Having said that, I know I would have had major difficulties slaughtering a goat if I’d gone back to Thabiso – I’m not sure if I could even have asked anyone else to do that for me.
Looking back, do you see your life in terms of a clear before and after? Are you the same person as you were before you went through this chronic pain experience?
There’s definitely a clear before and after in terms of how I think of my life – before the accident and after it. The date is in my head and I measure everything in my life around that, whether that’s a work event, a holiday, anything else – it’s always XX months/years before or after the accident. I don’t have the same thing with the day I got better because I try not to think about what happened and why, so I still calculate everything around the accident even though I should probably try and move my life to revolve around that happier day.
Largely I’m the same person. I still have the same interests and the same job, so I haven’t changed in that way. But I’d say I’m more focused – I lost so much of my life that I’m trying to make up for it now. So I don’t watch TV, I don’t go out to anything I’m not really interested in, I didn’t go to the work Christmas party because I could think of better things to do than stand around sober shouting over music … so I’m more ruthless about how I spend my time.
I also think invisible illness – or people’s reaction to it – hardens you. You have to grow a shell, otherwise you wouldn’t get through it. So I’m probably more brusque. I’m also really fucking angry about how I was treated and how I see other people – especially other women – being treated and I know that low-level anger shows through a lot. But as I said to a friend (male, obviously) recently, when he read my book and was upset at my anger: once you start noticing what’s going on, when you see people’s lives ruined because of pain, when in extreme cases you see women dying because of their gender, how can you not be angry? I think we should all be more angry. Maybe we could get more done.
You got a book contract before you’d completed all the travel. At that point you didn’t know what the conclusion of your quest would be: a cure, or acceptance of chronic pain as your new normal. Given that uncertainty, how did you go about shaping this narrative?
For the proposal for the book I did a country-by-country, treatment-by-treatment chapter plan (it was wildly ambitious, but pain and finances put the dampeners on it) and suggested the last chapter would be at a meditation retreat in Dorset, learning acceptance. I put in some waggish comment like “assuming I don’t get cured first hahaha”, but secretly I knew there was no way I could write the book if I wasn’t cured, partly on a very literal level – I physically wouldn’t be able to do it – but more because I didn’t see how I would ever be able to accept it. I actually postponed the deadline twice for the same reasons, and when I realised deadline 3 was looming and I wasn’t better and I was going to have to suck it up and write it I was distraught. I genuinely thought that putting all that I had been through onto the page and having to admit that I had failed – and failed my fellow pain people I was doing it for – would kill me. So I don’t know what I would have done if it had come to the crunch; luckily I got my pot of white chrysanthemums and didn’t have to see what happened.
You are leery of words like “miracle” and “cure,” so what terms might you use to describe what ended your pain after four years?
Something happened, and it happened in Brazil. But I would never tell anyone to hop on a plane to Brazil. What happened to me happened after four years of soul-searching and introspection as well as all those treatments. If I’d gone to Brazil first, I don’t know what would have happened.
Who do you see being among the audience for your book?
I’d love people who need it to read it and take what they need from it, but I’d also love doctors to read it – as an insight into patient psychology if nothing else – and I’d love it to be seen as a continuation of the whole #MeToo debate. That sounds holier than thou, and obviously it’d be great for people to read it as a Jon-Ronson-meets-Elizabeth-Gilbert-style romp because I’d feel like I’d succeeded from a writing point of view, but to be honest the only reason I wanted to write it in the first place was to show what’s happening to people in pain, and once I got better, the only thing that mattered to me was getting it into the hands of people who need it. I know how much I needed something like this.
Here are 30 books that are on my radar for the months of January through June. This is by no means a full inventory of what’s coming out (or even of what I have available through NetGalley and Edelweiss); instead, think of it as a preview of the books I actually intend to read. This time my list seems strangely skewed towards plants (the covers too), with a couple of bird- and medical-themed reads in there too. Also: two feminist group biographies, plenty of historical fiction, some short stories, a bit of true crime, and a fair few memoirs. I hope you’ll find a book or two here to tempt you.
(The descriptions below are generally adapted from the publisher blurbs on Goodreads, NetGalley or Edelweiss. Some of these I already have access to in print or galley form; others I’m still on the look-out for. The list is in chronological order by first publication date; if multiple books release on the same day they are in alphabetical order by author surname.)
On the Bright Side: The New Secret Diary of Hendrik Groen [Jan. 11, Michael Joseph (Penguin UK)]: I loved the first Hendrik Groen novel back in 2016 (reviewed here); this promises more of the same witty, bittersweet stories about elderly Dutch eccentrics. “Chaos will ensue as 85-year-old Hendrik Groen is determined to grow old with dignity … He dreams of escaping the confines of his care home and practising hairpin turns on his mobility scooter.” (NetGalley download)
Writer’s Luck: A Memoir: 1976–1991 by David Lodge [Jan. 11, Harvill Secker]: I reviewed the first volume of Lodge’s memoirs, Quite a Good Time to Be Born, for Nudge back in 2015, so I’m eager to continue his life story in this second installment. “Readers of Lodge’s novels will be fascinated by the insights this book gives—not only into his professional career but also more personal experience. The main focus, however, is on writing as a vocation.”
Brass: A Novel by Xhenet Aliu (for BookBrowse review) [Jan. 23, Random House]: “A waitress at the Betsy Ross Diner, Elsie hopes her nickel-and-dime tips will add up to a new life. Then she meets Bashkim, … who left Albania to chase his dreams. … Told in equally gripping parallel narratives with biting wit and grace, Brass announces a fearless new voice with a timely, tender, and quintessentially American story.” (NetGalley download)
Heal Me: In Search of a Cure by Julia Buckley [Jan. 25, Weidenfeld & Nicolson]: The “search for a cure [for chronic pain] takes her on a global quest, exploring the boundaries between science, psychology and faith with practitioners on the fringes of conventional, traditional and alternative medicine. Rais[es] vital questions about the modern medical system … and the struggle to retain a sense of self.” (print review copy)
The Mermaid and Mrs. Hancock by Imogen Hermes Gowar [Jan. 25, Harvill Secker]: “A spellbinding story of curiosity, love and obsession from an astonishing new talent. One September evening in 1785, the merchant Jonah Hancock hears urgent knocking on his front door. One of his captains is waiting eagerly on the step. He has sold Jonah’s ship for what appears to be a mermaid.” Comes recommended by Elle. (NetGalley download)
Owl Sense by Miriam Darlington [Feb. 6, Guardian Faber]: Darlington’s previous nature book, Otter Country, was stunning. Here, “Darlington sets out to tell a new story. Her fieldwork begins with wild encounters in the British Isles and takes her to the frosted borders of the Arctic. In her watching and deep listening to the natural world, she cleaves myth from reality and will change the way you think of this magnificent creature.”
The Grave’s a Fine and Private Place by Alan Bradley [Feb. 8, Orion]: I’ve read all eight Flavia de Luce novels so far, which is worth remarking on because I don’t otherwise read mysteries and I usually find child narrators annoying. There’s just something delicious about this series set in 1950s England. This one will be particularly interesting because a life-changing blow came at the end of the previous book.
A Black Fox Running by Brian Carter [Feb. 8, Bloomsbury UK]: “A beautiful lost classic of nature writing” from 1981 that “sits alongside Tarka the Otter, Watership Down,” et al. “This is the story of Wulfgar, the dark-furred fox of Dartmoor, and of his nemesis, Scoble the trapper, in the seasons leading up to the pitiless winter of 1947. As breathtaking in its descriptions of the natural world as it is perceptive in its portrayal of damaged humanity.” Championed by Melissa Harrison.
White Houses by Amy Bloom [Feb. 13, Random House]: The story of Lorena Hickock’s friendship/affair with Eleanor Roosevelt. “From Washington, D.C. to Hyde Park, from a little white house on Long Island to an apartment on Manhattan’s Washington Square, Amy Bloom’s new novel moves elegantly through fascinating places and times, written in compelling prose and with emotional depth, wit, and acuity.” (Edelweiss download)
The Italian Teacher by Tom Rachman [Feb. 20, Riverrun/Viking]: I’m a huge fan of Rachman’s, especially his previous novel, The Rise & Fall of Great Powers. “1955: The artists are gathering together for a photograph. In one of Rome’s historic villas, a party is bright with near-genius, shaded by the socialite patrons of their art. … Rachman displays a nuanced understanding of twentieth-century art and its demons, vultures and chimeras.” (Edelweiss download)
The Sea Beast Takes a Lover: Stories by Michael Andreasen [Feb. 27, Dutton (Penguin Group)]: “Romping through the fantastic with big-hearted ease, these stories cut to the core of what it means to navigate family, faith, and longing, whether in the form of a lovesick kraken slowly dragging a ship of sailors into the sea [or] a small town euthanizing its grandfathers in a time-honored ritual.” (NetGalley download)
The Cadaver King and the Country Dentist: A True Story of Injustice in the American South by Radley Balko and Tucker Carrington [Feb. 27, PublicAffairs]: “After two three-year-old girls were raped and murdered in rural Mississippi, law enforcement pursued and convicted two innocent men, [who] spent a combined thirty years in prison before finally being exonerated in 2008. Meanwhile, the real killer remained free.”
The Gospel of Trees: A Memoir by Apricot Irving [March 6, Simon & Schuster]: “Apricot Irving grew up as a missionary’s daughter in Haiti—a country easy to sensationalize but difficult to understand. Her father was an agronomist, a man who hiked alone into the hills … to preach the gospel of trees in a deforested but resilient country. Her mother and sisters, meanwhile, spent most of their days in the confines of the hospital compound they called home. As a child, this felt like paradise; as a teenager, the same setting felt like a prison.”
The Little Book of Feminist Saints by Julia Pierpont (illus. by Manjitt Thapp) [March 6, Random House]: This project reminds me a lot of A Glorious Freedom with its focus on women’s achievements and the full-color portraits of the subjects. I’ve just opened the file and the first two pieces give you a sense of the range that will be covered: Artemisia Gentileschi and Michelle Obama! (Edelweiss download)
Orchid Summer: In Search of the Wildest Flowers of the British Isles by Jon Dunn [March 8, Bloomsbury UK]: Dunn’s were my favorite contributions to the Wildlife Trusts’ Seasons anthologies (e.g. Winter). I’ve also enjoyed following his botanical travels on Twitter. “From the chalk downs of the south coast of England to the heathery moorland of the Shetland Isles, and from the holy island of Lindisfarne in the east to the Atlantic frontier of western Ireland, Orchid Summer is a journey into Britain and Ireland’s most beautiful corners.”
Anatomy of a Miracle by Jonathan Miles [March 13, Hogarth]: Miles’s previous novel, Want Not, is one of the books I most wish I’d written. “Rendered paraplegic after a traumatic event, Cameron Harris has been living his new existence alongside his sister, Tanya, in their battered Biloxi, Mississippi neighborhood where only half the houses made it through Katrina. … [A] stunning exploration of faith, science, mystery, and the meaning of life.”
Happiness by Aminatta Forna [March 16, Grove Atlantic]: “London. A fox makes its way across Waterloo Bridge. The distraction causes two pedestrians to collide—Jean, an American studying the habits of urban foxes, and Attila, a Ghanaian psychiatrist there to deliver a keynote speech. … Forna’s unerring powers of observation show how in the midst of the rush of a great city lie numerous moments of connection.” (NetGalley download)
The Long Forgotten by David Whitehouse [March 22, Pan Macmillan/Picador]: “When the black box flight recorder of a plane that went missing 30 years ago is found at the bottom of the sea, a young man named Dove begins to remember a past that isn’t his. The memories belong to a rare flower hunter in 1980s New York, whose search led him around the world and ended in tragedy.” (NetGalley download)
The Parentations by Kate Mayfield (to review for Shiny New Books?) [March 29, Oneworld]: From editor Jenny Parrott: “a stunning speculative historical novel … The story spans 200 years across Iceland and London, as a strange boy who can never die is surrounded by a motley collection of individuals, each with vested interests in his welfare. … [S]ome of the most extraordinary literary prose I’ve read during a thirty-year career.”
Things Bright and Beautiful by Anbara Salam [April 5, Fig Tree]: “1954, the South Pacific islands. When Beatriz Hanlon agreed to accompany her missionary husband Max to a remote island, she knew there would be challenges. But it isn’t just the heat and the damp and the dirt. There are more insects than she could ever have imagined, and the islanders are strangely hostile. [Then] an unexpected … guest arrives, and the couple’s claustrophobic existence is stretched to breaking point.” Sounds like Euphoria by Lily King. (NetGalley download)
Sharp: The Women Who Made an Art of Having an Opinion by Michelle Dean [April 10, Grove Press]: “Dorothy Parker, Rebecca West, Hannah Arendt, Mary McCarthy, Susan Sontag, Pauline Kael, Joan Didion, Nora Ephron, Renata Adler, and Janet Malcolm—these brilliant women’s lives intertwine as they cut through the cultural and intellectual history of America in the twentieth century, arguing as fervently with each other as they did with the sexist attitudes of the men who often undervalued their work as critics and essayists.”
The Plant Messiah: Adventures in Search of the World’s Rarest Species by Carlos Magdalena [April 10, Doubleday]: “Carlos Magdalena is not your average horticulturist. He’s a man on a mission to save the world’s most endangered plants. … [He] takes readers from the Amazon to the jungles of Mauritius. … Back in the lab, we watch as he develops groundbreaking, left-field techniques for rescuing species from extinction, encouraging them to propagate and thrive once again.” (NetGalley download)
The Man on the Middle Floor by Elizabeth S. Moore (for blog tour) [April 12, RedDoor Publishing]: “Despite living in the same three-flat house in the suburbs of London, the residents are strangers to one another. … They have lived their lives separately, until now, when an unsolved murder and the man on the middle floor connect them. … It questions whether society is meeting the needs of the fast growing autistic section of society.” (print ARC)
Bookworm: A Memoir of Childhood Reading by Lucy Mangan [April 24, Random House UK]: “This is a love letter to the joys of childhood reading, full of enthusiasm and wit, telling the colorful story of our best-loved children’s books, the extraordinary people who created them, and the thousand subtle ways they shape our lives.” (NetGalley download)
You Think It, I’ll Say It: Stories by Curtis Sittenfeld [April 24, Random House]: I would read anything Curtis Sittenfeld wrote; American Wife is still one of my absolute favorites. “The theme that unites these stories … is how even the cleverest people tend to misread others, and how much we all deceive ourselves. Sharp and tender, funny and wise, this collection shows [her] knack for creating real, believable characters that spring off the page.”
The Valley at the Centre of the World by Malachy Tallack [May 3, Canongate]: I’ve reviewed and enjoyed both of Tallack’s previous nonfiction works, including The Un-Discovered Islands. “Set against the rugged west coast of Shetland, in a community faced with extinction, [this] is a novel about love and grief, family and inheritance, rapid change and an age-old way of life. … [T]hese islanders must decide: what is left of us when the day’s work is done, the children grown, and all our choices have been made?”
Shapeshifters: A Journey through the Changing Human Body by Gavin Francis [May 8, Basic Books]: “Francis considers the inevitable changes all of our bodies undergo—such as birth, puberty, and death, but also … those that only some of our bodies will: like getting a tattoo, experiencing psychosis, suffering anorexia, being pregnant, or undergoing a gender transition. … [E]ach event becomes an opportunity to explore the meaning of identity.”
The Ensemble by Aja Gabel [May 15, Riverhead]: An “addictive debut novel about four young friends navigating the cutthroat world of music and their complex relationships with each other, as ambition, passion, and love intertwine over the course of their lives.”
Why Do Birds Suddenly Disappear? by Lev Parikian (for blog tour) [May 17, Unbound]: “A lapsed and hopeless birdwatcher’s attempt to see 200 birds in a year. But it’s not just about birds. It’s about family, music, nostalgia; hearing the stories of strangers; the nature of obsession and obsession with nature.”
The Great Believers by Rebecca Makkai [June 19, Viking]: I loved both of Makkai’s previous novels and have her short story collection on my Kindle. “Fiona is in Paris tracking down her estranged daughter, who disappeared into a cult. While staying with an old friend, a famous photographer …, she finds herself finally grappling with the devastating ways the AIDS crisis affected her life and her relationship with her daughter.” (Edelweiss download)
Other lists of enticing 2018 releases that might give you some ideas:
Guardian (UK, nonfiction)
Halfman, Halfbook (UK, mostly science/nature and history)
Parchment Girl (mostly nonfiction)