Tag: Julia Buckley

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.

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My Most Anticipated 2018 Releases, Part I

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.)

 

January

 

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)

 


February

 

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.”

 


March

 

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.”

 


April

 

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.”

 


May

 

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.”

 


June

 

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:

Book Riot

Guardian (UK, nonfiction)

Halfman, Halfbook (UK, mostly science/nature and history)

Parchment Girl (mostly nonfiction)

Sarah’s Book Shelves

Stylist (UK)

 

Which 2018 books are you most looking forward to? Do any of my choices interest you?