Recapping the Not the Wellcome Prize Blog Tour Reviews
It’s hard to believe the Not the Wellcome Prize blog tour is over already! It has been a good two weeks of showcasing some of the best medicine- and health-themed books published in 2019. We had some kind messages of thanks from the authors, and good engagement on Twitter, including from publishers and employees of the Wellcome Trust. Thanks to the bloggers involved in the tour, and others who have helped us with comments and retweets.
This weekend we as the shadow panel (Annabel of Annabookbel, Clare of A Little Blog of Books, Laura of Dr. Laura Tisdall, Paul of Halfman, Halfbook and I) have the tough job of choosing a shortlist of six books, which we will announce on Monday morning. I plan to set up a Twitter poll to run all through next week. The shadow panel members will vote to choose a winner, with the results of the Twitter poll serving as one additional vote. The winner will be announced a week later, on Monday the 11th.
First, here’s a recap of the 19 terrific books we’ve featured, in chronological blog tour order. In fiction we’ve got: novels about child development, memory loss, and disturbed mental states; science fiction about AI and human identity; and a graphic novel set at a small-town medical practice. In nonfiction the topics included: anatomy, cancer, chronic pain, circadian rhythms, consciousness, disability, gender inequality, genetic engineering, premature birth, sleep, and surgery in war zones. I’ve also appended positive review coverage I’ve come across elsewhere, and noted any other awards these books have won or been nominated for. (And see this post for a reminder of the other 56 books we considered this year through our mega-longlist.)
Notes Made While Falling by Jenn Ashworth & The Remarkable Life of the Skin by Monty Lyman: Simon’s reviews
*Monty Lyman was shortlisted for the 2019 Royal Society Science Book Prize.
[Bookish Beck review of the Ashworth]
[Halfman, Halfbook review of the Lyman]
Exhalation by Ted Chiang & A Good Enough Mother by Bev Thomas: Laura’s reviews
Constellations by Sinéad Gleeson & War Doctor by David Nott: Jackie’s reviews
*Sinéad Gleeson was shortlisted for the 2020 Rathbones Folio Prize.
[Rebecca’s Goodreads review of the Gleeson]
[Kate Vane’s review of the Gleeson]
[Lonesome Reader review of the Gleeson]
[Rebecca’s Shiny New Books review of the Nott]
Vagina: A Re-education by Lynn Enright: Hayley’s Shiny New Books review
Galileo’s Error by Philip Goff: Peter’s Shiny New Books review
Mother Ship by Francesca Segal & The Lady Doctor by Ian Williams: Rebecca’s reviews
[A Little Blog of Books review of the Segal]
[Annabookbel review of the Williams]
Chasing the Sun by Linda Geddes & The Nocturnal Brain by Guy Leschziner: Paul’s reviews
[Bookish Beck review of the Geddes]
Invisible Women by Caroline Criado-Pérez: Katie’s review
*Caroline Criado-Pérez won the 2019 Royal Society Science Book Prize.
[Liz’s Shiny New Books review]
The Faculty of Dreams by Sara Stridsberg: Kate’s review
Machines Like Me by Ian McEwan: Kate’s review
Hacking Darwin by Jamie Metzl & The Memory Police by Yoko Ogawa: Annabel’s reviews
*Yoko Ogawa is shortlisted for this year’s International Booker Prize.
[Lonesome Reader review of the Ogawa]
The Body by Bill Bryson & The World I Fell Out Of by Melanie Reid: Clare’s reviews
[Bookish Beck review of the Bryson]
[Rebecca’s Goodreads review of the Reid]
And there we have it: the Not the Wellcome Prize longlist. I hope you’ve enjoyed following along with the reviews. Look out for the shortlist, and your chance to vote for the winner, here and via Twitter on Monday.
Which book(s) are you rooting for?
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.
Books in Brief: Five I Enjoyed Recently
Despite my largely successful resolution to focus on my own books for the summer, I’ve also gotten through plenty of e-books from NetGalley and Edelweiss, too. I just find it easier to fit time with the Kindle into my day, whether it’s 20 minutes over lunch (food-themed nonfiction works particularly well for such situations) or 30 minutes on the cross trainer. Here’s a sample of the e-books I’ve enjoyed this summer: four nonfiction and one fiction.
Pancakes in Paris: Living the American Dream in France
By Craig Carlson
A good-natured memoir about the travails of opening the first American-style diner in Paris. Carlson charts his somewhat chaotic growing-up years in Connecticut, the college study abroad experience that kindled his love for France, his years trying to make it as a screenwriter and director in Hollywood, his long-held dream of opening Breakfast in America, and finding a French sweetheart of his own. Much of the book is devoted to a blow-by-blow of the bureaucratic nightmare of opening a restaurant, starting with getting investors on board and continuing through France’s ridiculously restrictive labor laws. (The impression I came away with was: France – great place to be an employee or rent property; terrible place to start a business.) Next time I’m in Paris, I will be looking to get myself a stack of his signature blueberry and white chocolate chip pancakes. Releases September 6th.
When in French: Love in a Second Language
By Lauren Collins
Collins, a journalist from North Carolina, married a Frenchman named Olivier she met while working in London. They then moved to Geneva, a mutually unfamiliar place but one where French reigned. For the first time, she was forced to learn a new language to survive. I love how she blends her own story with the philosophy, history and science behind language use. As she learned how to do things she never expected to have to in French – deal with her in-laws and give birth, for instance – she developed a new appreciation for the marvel that is bilingualism and pondered whether she was the same person in a different language. My favorite section recounts a holiday to Corsica that brought her family and Olivier’s into close quarters and cast her in the unforeseen role of translator. There’s a surprising amount of linguistic detail here, but Collins incorporates it well. Releases September 13th.
A Body, Undone: Living On After Great Pain
By Christina Crosby
Crosby teaches English and gender studies at Wesleyan University. Her inclusion in this “Sexual Cultures” series has to do with her lesbian feminist ideology but also the new understanding of her body an accident forced upon her at age 50. While she was cycling, a stick stuck in her spokes and she fell over onto concrete, breaking vertebrae in her neck that damaged her spinal cord. In the midst of a full and physical life, she became a quadriplegic. The great irony was that in this she joined her brother Jeff, whose MS had long since reduced him to a wheelchair. Here, in a memoir written 11 years after the accident, she reflects on chronic pain and new limitations – even including bowel habits – with blunt honesty as well as literary allusions. Along the way she remembers physical pleasures now denied to her. Nonetheless, she never comes across as sorry for herself. I found this to be highly absorbing.
The Reader on the 6.27
By Jean-Paul Didierlaurent
Guylain Vignolles works in a paper pulping plant. Rather than an enemy of books, however, he’s really a champion of the written word and its power to improve people’s lives. Every day when he descends into the belly of “The Thing” to clean it, he rescues the stray pages that escaped destruction and reads them aloud the following morning on his twenty-minute train commute, or to the residents of an old-folks home, no matter what their subject. He also helps his disabled former colleague Giuseppe stockpile all the books made from the recycled paper created on the fateful day the machine shredded his legs. There’s a charming Amélie vibe to this short novel, especially in the later chapters when Guylain sets off on a romantic quest to find the lavatory attendant whose wry diary he finds on a memory stick on the train. Most of the subplots could do with some expanding, but it’s a pleasant and super-quick read.
Stir: My Broken Brain and the Meals that Brought Me Home
By Jessica Fechtor
For me this is right up there with Molly Wizenberg and Ruth Reichl in how the author merges food writing with a frank recounting of personal experiences with crisis and heartache. At age 28 Fechtor, then a graduate student in history and Yiddish, collapsed on a treadmill with a brain bleed. Surgery to clip the aneurysm left her blind in one eye. During her long recovery process she started a food blog. At the end of each chapter she shares recipes that alternate between simple, favorite dishes and more involved ones. It’s that unpretentiousness that really endears her to me. She doesn’t think she was particularly brave in getting through an unwanted illness; nor does she think the perfect almond macaroon or cherry clafoutis is beyond anyone’s capability. Instead, she gives a glimpse into an ordinary life turned upside down and the foods that helped her regain a zest for life.