Tag: disability

Five Nonfiction Review Books: Hammond, Iorio, Rault, Riley & Rutt

A diagnosis of motor neurone disease; a father’s dispiriting experience of censorship trials. An illustrated history of fonts; an essay on grief; a cold weather-appropriate record of geese-watching. I gear up for Nonfiction November by catching up on five nonfiction review books I’ve been sent over the last couple of months. You can’t say that I don’t read a variety, even within nonfiction! See if one or more of these tempts you.

 

A Short History of Falling: Everything I Observed about Love whilst Dying by Joe Hammond

Hammond, a playwright, takes a wry, clear-eyed approach to his diagnosis of motor neurone disease (ALS) and the knowledge that his physical capacities will only deteriorate from here on out. “New items arrive almost daily and I am unexpectedly becoming the curator of the Museum of my own Decline.” Yet he also freezes funnier moments, like blowing his nose on a slice of bread because he couldn’t reach a tissue box, or spending “six hours of my fiftieth birthday sat on this hospice toilet, with a bottle of good Scotch wedged between my knees.”

Still, Hammond regrets that he’s become like a third small child for his wife Gill to look after, joining his sons Tom and Jimmy, and that he won’t see his boys grow up. (This book arose from an article he wrote for the Guardian in 2018 about making 33 birthday cards for his sons to open in the years after his death.) Although I wasn’t as interested in the details of Hammond’s earlier life, or his relationship with his narcissistic father, I appreciated his quiet acceptance of disability, help and impending death.

Favorite lines:

“I’ve waited all my life to know this peace. To know that I am nothing more than this body.”

“my place in all of this is becoming smaller, historic and just the right size of important.”

With thanks to 4th Estate for the free copy for review.

 

An Author on Trial: The Story of a Forgotten Writer by Luciano Iorio

The author’s father, Giuseppe Jorio, was a journalist and schoolteacher who wrote an infamous novel based on an affair he had in the 1930s. Using italicized passages from his father’s diary and letters to Tina, who was 19 when their affair started, Iorio reconstructs the sordid events and unexpected aftermath in fairly vivid detail. Tina fell pregnant and decided to abort the baby. Meanwhile, Giuseppe’s wife, Bruna, got the truth out of him and responded with more grace than might be expected. Giuseppe was devastated at the loss of his potential offspring, and realized he wanted to have a child with Bruna. He bid Tina farewell and the family moved to Rome, where the author was born in 1937.

Giuseppe’s novel inspired by the affair, Il Fuoco del Mondo (The Fire of the World) was rejected by all major publishers and accused of obscenity in a series of five trials that threatened his reputation and morale. It’s a less familiar echo of the Lady Chatterley’s Lover trial, and a poignant portrait of a man who felt he never lived up to his potential because of bad luck and societal disapproval. I enjoyed learning a bit about Italian literature. However, inconsistent use of tenses and shaky colloquial English (preposition issues, etc.) suggest that a co-writer or translator was needed to bring this self-published work up to scratch.

With thanks to the publicist for the free copy to review as part of a blog tour.

 

ABC of Typography by David Rault

[Translated from the French by Edward Gauvin]

From cuneiform to Gutenberg to Comic Sans, this history of typography is delightful. Graphic designer David Rault wrote the whole thing, but each chapter has a different illustrator, so the resulting book is like a taster course in comics styles. As such, I would highly recommend it to those who are fairly new to graphic novels and want to see whose work appeals to them, as well as to anyone who enjoyed Simon Garfield’s book about fonts, Just My Type.

I found it fascinating to explore the technical characteristics (serif vs. sans serif, etc.) and aesthetic associations of various fonts. For instance, I didn’t realize that my mainstay – Times New Roman – is now seen as a staid choice: “Highly readable, but overexposed in the early days of the Internet, it took on a reputation for drabness that it hasn’t shed since the ’90s.” Nowadays, some newspapers and brands pay typeface creators to make a font for their exclusive use. Can you name the typeface that is used on German road signs, or in Barack Obama’s campaign materials? (You’ll be able to after you read this.)

With thanks to SelfMadeHero for the free copy for review.

 

Time Lived, Without Its Flow by Denise Riley

What Virginia Woolf’s essay “On Being Ill” does for sickness, this does for bereavement. Specifically, Riley, whose son Jake died suddenly of a heart condition, examines how the experience of time changes during grief. “I’ll not be writing about death, but about an altered condition of life,” she opens. In short vignettes written from two weeks to three years after her son’s death, she reflects on how her thinking and feelings have morphed over time. She never rests with an easy answer when a mystery will do instead. “What if” questions and “as if” imaginings proliferate. Poetry – she has also written an exquisite book of poems, Say Something Back, responding to the loss of Jake – has a role to play in the acceptance of this new reality: “rhyme may do its minute work of holding time together.”

Max Porter provides a fulsome introduction to this expanded version of Riley’s essay, which first appeared in 2012. This small volume meant a lot more to him than it did to me; I preferred Riley’s poetic take on the same events. Still, this is sure to be a comfort for the bereaved.

Favorite passages:

“I’ll try to incorporate J’s best qualities of easy friendliness, warmth, and stoicism, and I shall carry him on in that way. Which is the only kind of resurrection of the dead that I know about.”

“I don’t experience him as in the least dead, but simply as ‘away’. Even if he’ll be away for my remaining lifetime. My best hope’s to have a hallucination of his presence when I’m dying myself.”

With thanks to Picador for the free copy for review.

 

Wintering: A Season with Geese by Stephen Rutt

Rutt’s The Seafarers: A Journey among Birds, one of my favorite recent nature/travel books, came out in May. What have we done to deserve another publication from this talented young author just four months later?! I didn’t enjoy this as much as The Seafarers, yet it does a lot of the same things well: it provides stunning word portraits of individual bird species, explores the interaction between nature and one’s mental state, and gathers evidence of the cultural importance of birds through legends and classical writings.

Here the focus is on geese, which the author had mostly overlooked until the year he moved to southern Scotland. Suddenly they were impossible to ignore, and as he became accustomed to his new home these geese sightings were a way of marking the seasons’ turn. Ethical issues like hunting, foie gras and down production come into play, and, perhaps ironically, the author eats goose for Christmas dinner!

Rutt’s points of reference include Paul Gallico (beware plot spoilers!), Aldo Leopold, Mary Oliver and Peter Scott. The writing in this short book reminded me most of Horatio Clare (especially The Light in the Dark) and Jim Crumley (who’s written many short seasonal and single-species nature books) this time around.

A favorite passage (I sympathize with the feelings of nomadism and dislocation):

“I envy the geese their certainty, their habits of home. I am forever torn between multiple places that feel like home. Scotland where I live or Suffolk, Essex, Norfolk: the flatlands of golden evenings and reeds, mud and water and sand. The distant horizon and all the space in between I grew up with, which seems to lurk somewhere, subconsciously calling me back.”

[Neat aside: My husband and I both got quotes (about The Seafarers) on the press release for this book!]

With thanks to Elliott & Thompson for the free copy.

 

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

America Reading & Book Haul, Etc.

The wedding of a college friend – who I calculated I’ve known at least half my life – was the excuse we needed to book a trip back to the States for the last two weeks of May. Along with the classy nuptials in the Fell’s Point area of Baltimore, we enjoyed a day’s sightseeing in Philadelphia, a couple of outings to watch birds and other wildlife on Cape May (a migration hotspot in New Jersey), two meet-ups with other friends, and plenty of relaxation time with my mom and sister, including a Memorial Day picnic at my mom’s retirement community and a tour of Antietam Battlefield. It was much hotter than anticipated, including some days in the high 80s or even 90s, and the hayfever, ticks and mosquitoes were bad, too, but we survived.

While back in Maryland I continued the intermittent downsizing process I’ve been going through for a while now. After being on the market for nearly a year, my family home finally sold and went to closing while we were over there. So that provided a scrap of closure, but my current estrangement from my father (we don’t even know where he’s living) means there’s a lot of continuing uncertainty.

In any case, I managed to reduce the number of boxes I’m storing with my sister from 29 to 20 by recycling lots of my old schoolwork, consolidating my mementos, reselling one box of books and donating another, donating a box of figurines and decorative bottles to a thrift store, displaying some at my mom’s place, giving away a few trinkets to a friend’s kids, and packing a bunch of stuff – photo albums and decorations as well as 64 books – in our various suitcases and hand luggage to take back to the UK.

And I also acquired more books, of course! A whopping 46 of these were free: eight review copies were waiting for me at my mom’s place; three were from the outdoor free bin at 2nd & Charles, a secondhand bookstore; one was found in a Little Free Library near our friends’ place in New Jersey (Emerald City by Jennifer Egan, not pictured); and the rest were from The Book Thing of Baltimore, a legendary volunteer-run free bookshop. I mostly raided the biography section for an excellent selection of women’s life writing; the fiction is unalphabetized so harder to find anything in, but I picked up a few novels, too. My only purchases were new (remainder) copies of one novel and one memoir from Dollar Tree. Total book spending on the trip: just $2.12.

 

What I Read:

 

Two that I’d already started but finished on the plane ride over:

  • The Florist’s Daughter by Patricia Hampl: (As featured in my spring reading list.) “Love and flowers, death and flowers.” Poetic writing about small-town Minnesota life, a tense relationship with her late mother, and her late father’s flower shop.
  • The Girls by Lori Lansens: I love reading about sister relationships, and the Darlen girls’ situation is an extreme case of love and jealousy given that they literally can’t get away from each other. Not as good as the two other conjoined-twin novels I’ve read, Chang and Eng by Darin Strauss and Cutting for Stone by Abraham Verghese, but I would read more from Lansens, a solid Oprah Book Club sort of author.

 

Three review books that will be featuring here in the near future:

  • Goulash by Brian Kimberling
  • Sorry I’m Late, I Didn’t Want to Come: An Introvert’s Year of Living Dangerously by Jessica Pan
  • Mother Ship by Francesca Segal

A few quick reads:

  • A Certain Loneliness: A Memoir by Sandra Gail Lambert: (A proof copy passed on by an online book reviewing friend.) A memoir in 29 essays about living with the effects of severe polio. Most of the pieces were previously published in literary magazines. While not all are specifically about the author’s disability, the challenges of life in a wheelchair seep in whether she’s writing about managing a feminist bookstore or going on camping and kayaking adventures in Florida’s swamps. I was reminded at times of Constellations by Sinéad Gleeson.
  • No Happy Endings: A Memoir by Nora McInerny: (Borrowed from my sister.) I didn’t appreciate this as much as the author’s first memoir, It’s Okay to Laugh, though it’s in the same style: lots of short, witty but bittersweet essays reflecting on life’s losses. Within a year of being widowed by cancer, she met a new partner and soon was – surprise! – pregnant with his baby. Together they formed a blended family of four children ranging from 0 to 15 and two wounded adults. McInerny also writes about her newfound spirituality and feminism. The problem with the essay format is that she cycles through aspects of the same stories multiple times.
  • Native Guard by Natasha Trethewey: (Free from 2nd & Charles.) Trethewey writes beautifully disciplined verse about her mixed-race upbringing in Mississippi, her mother’s death and the South’s legacy of racial injustice. She occasionally rhymes, but more often employs forms that involve repeated lines or words. The title sequence concerns a black Civil War regiment in Louisiana. Two favorites from this Pulitzer-winning collection by a former U.S. poet laureate were “Letter” and “Miscegenation”; stand-out passages include “In my dream, / the ghost of history lies down beside me, // rolls over, pins me beneath a heavy arm” (from “Pilgrimage”) and “I return / to Mississippi, state that made a crime // of me — mulatto, half-breed” (from “South”).

 

I also read the first half or more of: The Music Shop by Rachel Joyce, my June book club book; Hungry by Jeff Gordinier, a journalist’s travelogue of his foodie journeys with René Redzepi of Noma fame, coming out in July; and the brand-new novel In West Mills by De’Shawn Charles Winslow – these last two are for upcoming BookBrowse reviews.

 

But the book I was most smug to have on my reading list for the trip was the recent novel Cape May by Chip Cheek. What could be more perfect for reading on location? I asked myself. Unfortunately, it stood out for the wrong reasons. In October 1957 a young pair of virgins, Effie and Henry, travel from Georgia to New Jersey for an off-season honeymoon in her uncle’s vacation home. They’re happy enough with each other but underwhelmed with the place (strangely, this matched my experience of Cape May), and even consider going home early until they fall in with Clara, a friend of Effie’s cousin; Clara’s lover, Max; and Max’s younger sister, Alma. Effie and Henry join the others for nightly drunken revelry.

[SPOILERS!] As the weeks pass Effie, ill and dejected, almost seems to disappear as Cheek delves into Henry’s besotted shenanigans, described in unnecessarily explicit sexual detail. When Effie makes a bid or two for her own sexual freedom late on, it only emphasizes the injustice of spending so much time foregrounding Henry’s perspective. Despite the strength of the period atmosphere and seaside location, this ends up being dull and dated. If you’re after a typically ‘trashy’ beach read and don’t mind lots of sex scenes, you may get on with it better than I did.

Reading a few pages of Cape May over an ice-cold G&T at the wedding reception.

 

Bonus bookishness:

Vineland, New Jersey was on the way from our friends’ house to Cape May, so we stopped to take my proof copy of Barbara Kingsolver’s Unsheltered to its spiritual home. Alas, Vineland is an utterly boring small American town. However, Mary Treat at least appears on a painted mural on a building on the main street. The Historical Society, where Kingsolver did her research, was closed, but we photographed the outside.

 

What’s the last book you read ‘on location’? Did it work out well for you?

Rathbones Folio Prize Shortlist: The Perseverance by Raymond Antrobus

The Rathbones Folio Prize is unique in that nominations come from The Folio Academy, an international group of writers and critics, and any book written in English is eligible, so there’s nonfiction and poetry as well as fiction on this year’s varied shortlist of eight titles:


I’m helping to kick off the Prize’s social media tour by championing the debut poetry collection The Perseverance by Raymond Antrobus (winner of the 2018 Geoffrey Dearmer Award from the Poetry Society), issued by the London publisher Penned in the Margins last year. Antrobus is a British-Jamaican poet with an MA in Spoken Word Education who has held multiple residencies in London schools and works as a freelance teacher and poet. His poems dwell on the uneasiness of bearing a hybrid identity – he’s biracial and deaf but functional in the hearing world – and reflect on the loss of his father and the intricacies of Deaf history.

I was previously unaware of the difference between “deaf” and “Deaf,” but it’s explained in the book’s endnotes: Deaf refers to those who are born deaf and learn sign before any spoken language, so they tend to consider deafness part of their cultural identity; deaf means that the deafness was acquired later in life and is a medical consequence rather than a defining trait.

The opening poem, “Echo,” recalls how Antrobus’s childhood diagnosis came as a surprise because hearing problems didn’t run in the family.

I sat in saintly silence

during my grandfather’s sermons when he preached

The Good News I only heard

as Babylon’s babbling echoes.

Raymond Antrobus. Photo credit: Caleb Femi.

Nowadays he uses hearing aids and lip reading, but still frets about how much he might be missing, as expressed in the prose poem “I Move through London like a Hotep” (his mishearing when a friend said, “I’m used to London life with no sales tax”). But if he had the choice, would Antrobus reverse his deafness? As he asks himself in one stanza of “Echo,” “Is paradise / a world where / I hear everything?”

Learning how to live between two worlds is a major theme of the collection, applying not just to the Deaf and hearing communities but also to the balancing act of a Black British identity. I first encountered Antrobus through the recent Black British poetry anthology Filigree (I assess it as part of a review essay in an upcoming issue of Wasafiri literary magazine), which reprints his poem “My Mother Remembers.” A major thread in that volume is art as a means of coming to terms with racism and constructing an individual as well as a group identity. The ghazal “Jamaican British” is the clearest articulation of that fight for selfhood, reinforced by later poems on being called a foreigner and harassment by security staff at Miami airport.

The title comes from the name of the pub where Antrobus’s father drank while his son waited outside. The title poem is an elegant sestina in which “perseverance” is the end word of one line per stanza. The relationship with his father is a connecting thread in the book, culminating in the several tender poems that close the book. Here he remembers caring for his father, who had dementia, in the final two years of his life, and devotes a final pantoum to the childhood joy of reading aloud with him.

A number of poems broaden the perspective beyond the personal to give a picture of early Deaf history. Several mention Alexander Graham Bell, whose wife and mother were both deaf, while in one the ghost of Laura Bridgeman (the subject of Kimberly Elkins’s excellent novel What Is Visible) warns Helen Keller about the unwanted fame that comes with being a poster child for disability. The poet advocates a complete erasure of Ted Hughes’s offensive “Deaf School” (sample lines: “Their faces were alert and simple / Like faces of little animals”; somewhat ironically, Antrobus went on to win the Ted Hughes Award last month!) and bases the multi-part “Samantha” on interviews with a Deaf Jamaican woman who moved to England in the 1980s. The text also includes a few sign language illustrations, including numbers that mark off section divisions.

The Perseverance is an issues book that doesn’t resort to polemic; a bereavement memoir that never turns overly sentimental; and a bold statement of identity that doesn’t ignore complexities. Its mixture of classical forms and free verse, the historical and the personal, makes it ideal for those relatively new to poetry, while those who enjoy the sorts of poets he quotes and tips the hat to (like Kei Miller, Danez Smith and Derek Walcott) will find a resonant postcolonial perspective.

 

A favorite passage from “Echo” (I’m a sucker for alliteration):

the ravelled knot of tongues,

of blaring birds, consonant crumbs

of dull doorbells, sounds swamped

in my misty hearing aid tubes.


The winner of the Rathbones Folio Prize will be announced on May 20th.

 

My thanks to the publisher for the free copy for review.

Just Okay for Me, Dawg

This was one of the catchphrases of long-time judge Randy Jackson on the reality TV show American Idol, which was my guilty pleasure viewing for a decade or more. The three recent books for which I provide short-ish reviews below have nothing much in common apart from the fact that I requested or accepted them from publishers and ended up feeling disappointed but like I still owed a review. You can consider them all .

 

The Friendship Cure by Kate Leaver

(Duckworth, March 22nd)

We’re in the middle of a loneliness epidemic, so friends are more important than ever. That’s the impetus for Kate Leaver’s jaunty, somewhat insubstantial book about modern friendship. She observes teen girls on the Tube and reflects on how we as primates still engage in social grooming – though language has replaced much of this more primitive bond-forming behavior. We experience a spike in our number of friends through adolescence and early adulthood, but friendships can fall by the wayside during our thirties as we enter long-term relationships and turn our attention to children and other responsibilities. Leaver argues that female friendships can amplify women’s voices and encourage us to embrace imperfection. She also surveys the bromance, mostly in its TV and film manifestations. There are plenty of pop culture references in the book; while I enjoy a Scrubs or Parks and Recreation scene or quotation as much as the next fan, the reliance on pop culture made the book feel lightweight.

Perhaps the most useful chapter was the one on online friendships (hi, book blogger friends!). We so often hear that these can’t replace IRL friendships, but Leaver sticks up for social media: it allows us to meet like-minded people, and is good for introverted and private people. Anything is better than isolation. The biggest problem I had with the book was the tone: Leaver is going for a Caitlin Moran vibe, and peppers in hip references to Taylor Swift, Lindsay Lohan and the like. But then she sometimes tries for more of a Mary Beard approach, yet doesn’t trust herself to competently talk about science, so renders it in matey, anti-intellectual language like “Robin [Dunbar, of Oxford University] did some fancy maths” (um, I think you mean “Dr. Dunbar”!) or “Let me hit you with a bit of research.”

Favorite lines:

“on some days, somewhere in our souls, we still count the number of social media connections as a measure of who we are”

“When you successfully recruit a new person into your friendship circle, you’re essentially confirming that you are a likable human being, worthy of someone’s time and emotional investment.”

You might choose to read instead: Kory Floyd’s The Loneliness Cure; Ann Patchett’s Truth and Beauty; Anna Quindlen’s essay “Girlfriends” from Lots of Candles, Plenty of Cake.

 

Writer’s Luck: A Memoir: 1976–1991 by David Lodge

(Harvill Secker, January 11th)

David Lodge has been one of my favorite authors for over a decade. His first memoir, Quite a Good Time to Be Born: A Memoir, 1935–1975 (see my Nudge review), is a good standalone read, even for non-fans, for its insight into the social changes of post-war Britain. However, this volume makes the mistake of covering much less ground, in much more detail – thanks to better record-keeping at the peak of his career – and the result is really rather tedious. The book opens with the publication of How Far Can You Go? and carries through to the reception of Paradise News, with a warning that he cannot promise a third volume; he is now 83. Conferences, lecture tours, and travels are described in exhaustive detail. There’s also a slightly bitter edge to Lodge’s attempts to figure out why ventures flopped or novels got negative reviews (Small World, though Booker-shortlisted, was better received in America), though he concludes that his career was characterized by more good luck than bad.

I liked the account of meeting Muriel Spark in Italy, and valued the behind-the-scenes look at the contentious task of judging the 1989 Booker Prize, which went to Kazuo Ishiguro for The Remains of the Days. Especially enjoyable is a passage about getting hooked on saunas via trips to Finland and to Center Parcs, a chain of all-inclusive holiday activity camps in England. Oh how I laughed at his description of nude sauna-going in midlife (whether I was supposed to or not, I’m not sure): “The difference in pleasure between swimming wearing a costume of any kind and the sensation of swimming without one, the water coursing unimpeded round your loins as you move through it, cannot be exaggerated, and I first discovered it in Center Parcs.” I also cringed at the Lodges placing “our Down’s son” Christopher in a residential care home – I do hope thinking about disability has moved on since the mid-1980s.

Ultimately, I’m not sure Lodge has had an interesting enough life to warrant a several-volume project. He’s an almost reassuringly dull chap; “The fact is that I am constitutionally monogamous,” he admits at one point. Although it was fun for me to see the genesis of novels like Paradise News, I don’t think I’d have the stomach for reading any more about why Lodge thinks his star faded starting in the 1990s. However, I’ll keep this on the shelf to go back to for some context when I finally get around to rereading Small World and Nice Work.

Favorite lines:

“there has been a downside to the Prize Culture which the Booker engendered. It has warped the evaluation of new fiction by measuring success as if it were a competitive sport.”

You might choose to read instead: Lodge’s Quite a Good Time to Be Born or John Carey’s The Unexpected Professor: An Oxford Life in Books – overall the better autobiography of a working-class, bookish lad.

 

 

The Parentations by Kate Mayfield

(Point Blank [Oneworld], March 29th)

Sisters Constance and Verity Fitzgerald have been alive for over 200 years. A green pool in Iceland, first discovered in 1783, gives them “extended mortality” so long as they take the occasional two-week nap and only swallow two drops of the liquid at a time. In London in 2015, they eat a hearty stew by candlelight and wait for their boy to come. Then they try the churchyard: dead or alive, they are desperate to have him back. Meanwhile, Clovis Fowler is concealing extra phials of the elixir from her husband, their son and the maid. What’s going on here? We go back to Iceland in 1783 to see how the magic pool was first found, and then hop across to 1783 London to meet the sisters as children.

I read the first 67 pages, continued skimming to page 260, and then gave up. At well past the one-third point, the novel still hasn’t established basic connections. A book of nearly 500 pages has to hook the reader in sooner and more securely, not lull them with wordiness (case in point: on the first page of the first chapter, the adjective “macilent” – I looked it up and it means thin or lean, either of which would have been a far preferable word to use).

I could see faint echoes here of so many great books – Jonathan Strange and Mr. Norrell, A Discovery of Witches, Slade House, The Essex Serpent; works by Hannah Kent and Diane Setterfield, maybe even Matt Haig? I liked Mayfield’s memoir The Undertaker’s Daughter and had hoped for improvement with this debut novel. As it is, The Parentations has an interesting premise and lineage, but doesn’t deliver.

Favorite lines:

“His rage foments a decision. He will either take his place in the mounds of the dead, or he will find a good reason to stay alive.”

“Francis and Averil Lawless have impressed upon their daughters the concept of the consequences of a single moment, and there is no better teacher than the river’s majesty and its demand for respect for its waters, which can easily bring violence and ruin as well as wealth and peace.”

You might choose to read instead: Any of the literary fantasy novels listed above.

 


What books have disappointed or defeated you lately?

A Journey through Chronic Pain: Heal Me by Julia Buckley

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.

My rating:


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.