Tag: chronic pain

The 2019 Wellcome Book Prize: Shadow Panel and Wish List

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.

 

Nonfiction

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

 

Fiction

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?

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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.