Tag Archives: chronic pain

Barbellion Prize Shortlist: Golem Girl by Riva Lehrer

Three memoirs remain on the shortlist; three windows onto living with disability or caring for a relative with an incapacitating mental illness.

First up is a visual artist’s account of growing up with spina bifida, entering Disabled culture, and forming a collaborative style all her own.

 

Golem Girl: A Memoir by Riva Lehrer (2020)

“My first monster story was Frankenstein,” Lehrer writes. Like Dr. Frankenstein’s creation or the Golem of medieval Jewish legend, she felt like a physical monstrosity in search of an animating purpose. Born with spina bifida, she spent much of her first two years in Cincinnati Children’s Hospital and would endure dozens of surgeries in years to come to repair her spine and urinary tract and attempt to make her legs the same length. In 1958, when she was born, 90% of children with her condition died before age two. Lehrer’s mother, Carole, who grew up in a family pharmacy business and had worked as a medical researcher, was her daughter’s dogged health advocate. Carole fought for Riva even though she was caught up in her own chronic pain after a botched back surgery that left her addicted to painkillers.

Lehrer went to a special school for the disabled in Ohio. It was racially integrated (rare at that time) and offered children physical therapy and normal experiences like Girl Scouts and day camp. But it was clear the teachers didn’t expect these children to achieve anything or have a family life; home ec classes just taught how to wash up from a wheelchair and make meals for one. One horrible day, a substitute teacher locked a classroom door and hectored the children, saying their parents must have drunk and fornicated and they were the wages of sin.

Between the routine or emergency surgeries and family heartaches, Lehrer grew up to attend art school at the University of Cincinnati and Art Institute of Chicago. Professors (most of them male) found her work grotesque and self-indulgent, and she struggled with how to depict her body. There were boyfriends and girlfriends, even a wife (though in the late 1980s, before same-sex marriage was legally recognized). In 1996 she joined the Chicago Disabled Artists Collective and it was a revelation. She learned that Disabled (like Deaf) is a cultural identity as much as a physical reality, adopted vocabulary like crip (a reclaimed term, like queer) and ableism, and began painting fellow artists with dwarfism, prostheses, or wheelchairs.

Becoming a member of the Medical Humanities faculty as well as a visiting artist at two Chicago universities, the School of the Art Institute and Northwestern, gave Lehrer access to Gross Anatomy Labs, where she found in the historical collections – just as she had at the Mütter Museum of medical curiosities in Philadelphia – a fetus in a jar with her very condition. Knowing that she might be the first Disabled person her budding doctors met, she was determined to give them an “inclusive vision” of “the reality of human divergence.” She would have the medical students draw one of the jarred specimens, not as an oddity but as an individual, and give a 15-minute presentation about someone who lives with that disability.

Golem Girl is a touching family memoir delivered in short, essay-like chapters, most of them named after books or films. It is also a primer in Disability theory and – what truly lifts it above the pack – a miniature art gallery, with reproductions of paintings from various of Lehrer’s series as well as self-portraits, family portraits, and photographs. “I fiercely wanted to see a gallery filled with portraits of luminous crips,” she writes; “I suspected I was going to have to make them myself.” And that is just what she has done. The “Circle Stories” featured the Chicago Disabled Artists Collective and “Mirror Shards” included animal daimons, while “The Risk Pictures” of some of her personal heroes were daringly collaborative: she would give the subject an hour alone in her studio with their portrait in progress and allow them to amend it as they wished. Much of her work has bright colors and involves anatomical realism and symbols personal to herself and/or the subject – with Frida Kahlo an acknowledged influence.

I’ve now (just about) read the whole Barbellion Prize shortlist. For how it illuminates a life of being different – through queerness in addition to disability, engages with the academic fields of anatomy and Disability studies, and showcases the achievements of Disabled artists, this would be my clear winner of the inaugural award, with Sanatorium my backup choice. It is also a finalist for the National Book Critics Circle Award for Autobiography.


Readalikes I have also reviewed:


Favorite lines:

“The hospital demands surrender. You accept the piercing, the cutting, the swallowing of noxious chemicals. You roll over and stand up even when it’s as impossible as flying around the ceiling. Whoever has authority can remove your clothes and display your stitched-up monster body to crowds of young white-coated men. You’re an assemblage of parts that lack gender and those elusive things called feelings.”

“‘Normal’ beauty is unmarked, smooth, shiny, upright; but my gaze began to slip past normal beauty as if it was coated in baby oil. I wanted crip beauty—variant, iconoclastic, unpredictable. Bodies that were lived in with intentionality and self-knowledge. Crip bodies were fresh.”


With thanks to Virago for the free copy for review.

 

See my introductory post for more about the Barbellion Prize, which is in its first year and will be awarded on Friday “to an author whose work has best represented the experience of chronic illness and/or disability.”

I will review the final two on the shortlist, The Fragments of My Father by Sam Mills and Kika & Me by Amit Patel, tomorrow.

Introducing the Barbellion Prize & A Review of Sanatorium by Abi Palmer

New this year, the Barbellion Prize will be awarded annually “to an author whose work has best represented the experience of chronic illness and/or disability.” It’s named after W.N.P. Barbellion (the pen name of Bruce Frederick Cummings), the English author of The Journal of a Disappointed Man, which he started writing at 13. A self-taught naturalist, he specialized in lice when he worked for the British Museum’s department of natural history in London. He was rejected for war service in 1915 after a doctor found him to have multiple sclerosis. At that time, the diagnosis was like a death sentence; indeed, Cummings died at age 30 in 1919, though by then he had managed to produce two volumes of memoirs as well as a daughter.

Here’s some more information on the prize criteria from the website: “Eligibility for the prize is predicated on the author’s presentation of life with a long-term chronic illness or disability, whether that be in the form of blindness, MS, cystic fibrosis, dwarfism, or another comparable condition that may substantially define one’s life. Authors – such as those in a carer’s capacity – who themselves are not ill may be considered for the prize if their work is truly exceptional as an articulation of life with illness, but authors who themselves deal personally with illness or disability will take priority in any selection for the prize.”

Especially in the absence of the Wellcome Book Prize, which has been on hiatus since the announcement of the 2019 winner, I’m delighted that there is a new prize with a health slant, particularly one that will lead to greater visibility for disabled writers and their stories. From a longlist of eight, in January the Barbellion Prize judges chose a shortlist of four titles: three memoirs and a work of autofiction. The publishers kindly agreed to send me the shortlist for review. Two have arrived so far (there have been postal delays in the UK, as in many places).

I have already read one of the nominees and will do my best to review the rest before the £1000 prize is awarded on the 12th. The others are:

  • Golem Girl by Riva Lehrer – An illustrated memoir by a visual artist born with spina bifida.
  • The Fragments of My Father by Sam Mills – A memoir of being a carer for her father, who has paranoid schizophrenia; also includes musings on Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives. I’m currently reading this one.
  • Kika & Me by Amit Patel – Patel was a trauma doctor and lost his sight within 36 hours due to a rare condition. He was paired with his guide dog, Kika, in 2015.

 

 

Sanatorium by Abi Palmer (2020)

Water is a source of comfort and delight for Abi, the narrator of Sanatorium (whose experiences may or may not be those of the author; always tricky to tell with autofiction). Floating is like dreaming for her – an intermediate state between the solid world where she’s in pain and the prospect of vanishing into the air. In 2017 she spends a few weeks at a sanatorium in Budapest for water therapy; when she returns to London she buys a big inflatable plastic bathtub to keep up the exercises as she tries to wean herself off of opiates.

Abi feels fragile due to a whole host of body issues, some in her past but most continuing into the present: an autoimmune connective tissue disorder, psoriatic arthritis, Crohn’s disease, and sexual assaults. Her knee is most immediately problematic, leading her to use a mobility scooter. As her health waxes and wanes, other people – unable to appreciate any internal or incremental changes – judge her by whether or not she is able to walk well.

The book is in snippets, often of just a paragraph or even one sentence, and cycles through its several strands: Abi’s time in Budapest and how she captures it in an audio diary; ongoing therapy at her London flat, custom-designed for disabled tenants (except “I was the only cripple who could afford it”); the haunted house she grew up in in Surrey; and notes on plus prayers to St. Teresa of Ávila, accompanied by diagrams of a female figure in yoga poses.

Locations are given in small letters in the top corner of the page, apart from for the more dreamlike segments that can’t be pinned down to any one place. For instance, I was reminded of a George Saunders story by the surreal interlude in which Abi imagines Van Gogh’s Starry Night reproduced in the hair on a detached pair of legs mounted on a wall as a work of art.

The different formats and short chunks of prose generally keep the voice from becoming monotonous, though I did wonder if occasional use of the third person (and some more second person) could have been effective, too. Far from a straightforward memoir, the book incorporates passages that are closer to fantasy and poetry, and the visual elements and fertile imagery attest to Palmer’s background as a mixed-media artist.

Sanatorium is a fascinating work – matter-of-fact, playful and sensual – that vividly conveys the reality of life with a chronic illness. It was already on my wish list, but I’m so glad that this shortlisting gave me a chance to read it. Though I haven’t read the other nominees yet, the passages below are proof that this would be a deserving Barbellion Prize winner.

You go through life as a chronically ill person with so many different people who have so many different opinions about how your treatment should be. They’re not always useful or right. You have to build your own narrative and your own sense of what feels appropriate. You have to learn to trust your body to tell you what’s working. But that’s hard too, when your body keeps changing the rules.

I am one of the more privileged ones and still I’m screaming. God, it would be so nice just to dissolve into nothing and wash up onto a lonely beach.

I wonder if what I’ve learned about chronic illness, more than anything, is that it’s a constant cycle. You fall apart, then you try your best to rebuild again. I wonder what would happen if I stopped trying.

Readalikes I have also reviewed:


With thanks to Penned in the Margins for the free copy for review.

January’s Nonfiction Releases: Clarke, Heminsley and Lalkhen

Three new books with medical themes (no surprise there), including the first Covid wave in the UK; fertility and body issues in a new queer family; and pain management strategies.

Breathtaking: Inside the NHS in a Time of Pandemic by Rachel Clarke

Clarke is a palliative care doctor based in Oxfordshire. She runs the Katharine House hospice but during the coronavirus pandemic has also been on active duty in the Oxford University Hospitals system. If you’re on social media you have likely come across some of her postings as she has been equally vocal in her praise of the NHS and her criticism of Boris Johnson’s faltering policies, which are often of the too little, too late variety. So I was eager to read her insider’s account of hospital treatment of the first wave of Covid in the UK, especially because her previous book, Dear Life, was one of my top two nonfiction releases of last year.

The focus is on the first four full months of 2020, and the book originated in Clarke’s insomniac diaries and notes made when, even after manically busy shifts, she couldn’t rest her thoughts. Her pilot husband was flying to China even as increasingly alarming reports started coming in from Wuhan. She weaves in the latest news from China and Italy as well as what she hears from colleagues and disease experts in London. But the priority is given to stories: of the first doctor to die in China; of a Yorkshire ICU nurse’s father, who comes down with Covid and is on a ventilator in an Oxford hospital; and of her patients there and in the hospice. She is touched that so many are making great sacrifices, such as by deciding not to visit loved ones at the end of their lives so as not to risk spreading infection.

A shortage of PPE remained a major issue, though Dominic Pimenta (whose Duty of Care was my first COVID-19 book) pulled through for her with an emergency shipment for the hospice – without which it would have had to close. Clarke marvels at the NHS’s ability to create an extra 33,000 beds within a month, but knows that this comes at a cost of other services, including cancer care, being stripped back or cancelled, meaning that many are not receiving the necessary treatment or are pushing inescapable problems further down the road.

From January 26, 2021

A comparison with Gavin Francis’s Intensive Care, published earlier in the month, is inevitable. Both doctors bounce between headlines and everyday stories, government advice and the situation on the ground. Both had their own Covid scare – Clarke didn’t meet the criteria to be tested so simply went back to work two weeks later, when she felt well enough – and had connections to regions that foreshadowed what would soon happen in the UK. Both give a sense of the scope of the crisis and both lament that, just when patients need compassion most, full PPE leads to their doctors feeling more detached from them than ever.

However, within the same page count, Francis manages to convey more of the science behind the virus and its transmission, and helpfully explores the range of effects Covid is having for different groups. He also brings the story more up to the minute with a look back from November, whereas Clarke ends in April and follows up with an epilogue set in August. A book has to end somewhere, yes, but with this crisis ongoing, the later and more relevant its contents can be, the better. And in any book that involves a lot of death, mawkishness is a risk; Clarke so carefully avoided this in Dear Life, but sometimes succumbs here, with an insistence on how the pandemic has brought out the best in people (clapping and rainbows and all that). Her writing is as strong as ever, but I would have appreciated a sharper, more sombre look at the situation a few months later. Perhaps there will be a sequel.

From January 6, 2021

With thanks to Little, Brown UK for the free copy for review.

Some Body to Love: A Family Story by Alexandra Heminsley

From Heminsley’s previous book, Leap In, I knew about her getting married and undergoing IVF. It was also a book about outdoor swimming; I appreciated her words on acquiring a new skill as an adult and overcoming body issues. This memoir continues the story: in 2017, after a gruelling journey through infertility treatment, Heminsley finally got the baby she wanted. But not before a couple more heart-wrenching moments: the lab made an error and notified her that she shared no DNA with this last embryo, and while heavily pregnant she was assaulted by a drunk man on a train. Both incidents left her feeling a loss of agency. “Why was I consistently being deemed the least reliable witness of my own reality?” she asks.

As they adjusted to new life with a baby, Heminsley started to notice that she wasn’t connecting with her husband, D, like she used to. She felt emotionally unsupported and, in fact, jealous of D’s relationship with their son, L. And while they’d never been the most conventional couple, D’s changes of appearance and wardrobe seemed like a sign of something bigger. Indeed, when L was six months old, D told Heminsley, “this body doesn’t represent who I am” and announced a decision to begin transitioning.

As D moved towards having a body that fit their identity, Heminsley, too, needed to get back in touch with her body. After books like Running Like a Girl, she was considered an exercise guru, but she didn’t see herself in the new obsession with Instagram-ready images of fitness perfection. This is not, then, primarily a memoir of queer family-making, because D’s transitioning was not Heminsley’s story to tell and mostly occurs in the background. Instead she focuses on what she does know and can control: her relationship to her own body.

However, this entails what can feel like irrelevant flashbacks to her teenage years of undergoing rehab at a military clinic in Germany for hypermobility, trips to Trinidad and Italy, and the genesis of her two sporting memoirs. Much as I applaud the sensitivity to trans and body issues, the book ends up feeling scattered. Still, the writing is so candid and the narrative so eventful that you’ll race through this even if you don’t normally pick up nonfiction. (For a bit more information, see my short write-up of the virtual book launch.)

With thanks to Chatto & Windus for the free copy for review.

Pain: The Science of the Feeling Brain by Abdul-Ghaaliq Lalkhen

Originally from South Africa, Dr Lalkhen is an anaesthesiology and pain specialist based in Manchester. In a nutshell, his approach is “biopsychosocial,” meaning that he seeks to understand pain not just as a physical phenomenon resulting from acute injury or damage but as an ongoing process that is affected by emotional and psychological factors. Particularly in the context of chronic syndromes, he acknowledges that pain can continue even when its immediate cause has been repaired. Mental preparation can come into the equation: if a patient assumes they’ll wake up from surgery healed, they may be alarmed if pain persists. Lalkhen talks about managing patient expectations, perhaps with something as simple as the promise, “we’ll aim to get your pain down to a 4 after surgery.” In part, he blames Western society’s Cartesian philosophy for treating mind and body as separate rather than a system.

There are genetic and psychological reasons people might be predisposed to chronic pain. Pain itself can then change the brain chemistry, making the body more alert to pain signals. People can choose one of three paths, Lalkhen observes: “You can spend your time agitating about the alarm going off, you can try to ignore it (but the ignoring of it actually takes up more energy), or the final alternative is to learn to live with this deeply unpleasant situation.” Those who opt for pharmacological solutions can become addicted to opiates, which are less effective over time. Non-drug-related therapies involve the desensitization of nerves, the injection of anaesthetics or steroids, or the implanting of spinal cord stimulators. But all of these strategies have their limitations, and can diminish in efficacy. The patients he sees in his pain clinics may be disappointed that, rather than offering a panacea, he wants to wean them off their current pain relief and help them develop a new way of thinking about pain.

I felt I learned a lot from reading this. Lalkhen is careful to state that he is only referring to non-cancer pain (cancer pain in terminal patients will take all the morphine you can throw at it). Like many physicians, he worries about the modern epidemic of overtreatment and our obsession with wellness. I especially enjoyed the discussion of the understanding of pain and its treatment from the ancient world onward, and in particular the history of opiates. The prose is not literary, but this is an accessible and informational read if the subject matter draws you.

With thanks to Atlantic Books for the free copy for review.

 

What recent nonfiction releases can you recommend?

Announcing the Not the Wellcome Prize Shortlist

After deliberation and two rounds of voting, we as a shadow panel (Annabel of Annabookbel, Clare of A Little Blog of Books, Laura of Dr. Laura Tisdall, Paul of Halfman, Halfbook and I) have reduced the 19 longlisted titles to a shortlist of six books. A few of these were clear standouts on which we all agreed, while the others required more difficult decisions.

Exhalation by Ted Chiang

Invisible Women by Caroline Criado Perez

Constellations by Sinéad Gleeson

The Nocturnal Brain by Guy Leschziner

The Remarkable Life of the Skin by Monty Lyman

War Doctor by David Nott

 

We’re pleased with the quality and variety we’ve come up with here. While nonfiction dominates, we have included science fiction stories that raise questions about artificial intelligence and human development. The other books address gender inequality; cancer, chronic pain, and disability; circadian rhythms and sleep; anatomy; and surgery in war zones.

The shadow panel members will vote this coming weekend to choose a winner. In the meantime, I have set up a Twitter poll to run through Saturday, the results of which will serve as one additional weighted vote. Our winner will be announced one week from today, on the morning of Monday the 11th. Go forth and vote!

 

Which book(s) are you rooting for?

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

[Bookish Beck 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

[Lonesome Reader 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?

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?

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

pancakesA 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. 3.5 star rating

 

When in French: Love in a Second Language

By Lauren Collins

when in frenchCollins, 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. 4 star rating

 

A Body, Undone: Living On After Great Pain

By Christina Crosby

body undoneCrosby 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. 4 star rating

  

The Reader on the 6.27

By Jean-Paul Didierlaurent

readerGuylain 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. 3.5 star rating

 

Stir: My Broken Brain and the Meals that Brought Me Home

By Jessica Fechtor

stirFor 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. 4.5 star rating


Have you read any of these? Which one takes your fancy?