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:
- Heal Me by Julia Buckley
- Bodies of Water by V. H. Leslie
- My Year of Rest and Relaxation by Ottessa Moshfegh
With thanks to Penned in the Margins for the free copy for review.
I’m coming towards the close of my 20 Books of Summer challenge. Now, I’ve done plenty of substituting – some of my choices from early in the summer will have to spill over into the autumn (for instance, I’m reading the May Sarton biography slowly and carefully so am unlikely to finish it before early September) or simply wait for another time – but in the end I will have read 20+ books I own in print by women authors. (Ongoing/still to come are a few buddy reads: Half of a Yellow Sun by Chimamanda Ngozi Adichie with Anna Caig; Late Nights on Air by Elizabeth Hay with Naomi of Consumed by Ink and Penny of Literary Hoarders; and West with the Night by Beryl Markham with Laila of Big Reading Life.)
The two #20Booksof Summer I finished most recently have been the best so far. I’d heard great things about these debut novels but let years go by before getting hold of them, and then months more before picking them up. Though one is more than twice the length of the other, they are both examples of large-scale storytelling at its best: we as readers are privy to the sweep of a whole life, and get to know the protagonists so well that we ache for their sorrow. What might have helped the authors tap into the emotional power of their stories is that both drew on family history, to different extents, when creating the characters and incidents.
The Life and Loves of Lena Gaunt by Tracy Farr (2013)
Lena Gaunt: early theremin player, grande dame of electronic music, and opium addict. When we meet our 81-year-old narrator, she’s just performed at the 1991 Transformer Festival and has caught the attention of a younger acolyte who wants to come interview her at home near Perth, Australia for a documentary film – a setup that reminded me a bit of May Sarton’s Mrs. Stevens Hears the Mermaids Singing. It’s pretty jolting the first time we see Lena smoke, but as her life story unfolds it becomes clear that it’s been full of major losses, some nearly unbearable in their cruelty, so it’s no surprise that she would wish to forget.
Though Lena bridles at Mo’s many probing questions, she realizes this may be her last chance to have her say and starts typing up a record of her later years to add to a sheaf of autobiographical stories she wrote earlier in life. These are interspersed with the present action to create a vivid collage of Lena’s life: growing up with a pet monkey in Singapore, moving to New Zealand with her lover, frequenting jazz clubs in Paris, and splitting her time between teaching music in England and performing in New York City.
With perfect pitch and recall, young Lena moved easily from the piano to the cello to the theremin. I loved how Farr evokes the strangeness and energy of theremin music, and how sound waves find a metaphorical echo in the ocean’s waves – swimming is Lena’s other great passion. Life has been an overwhelming force from which she’s only wrested fleeting happiness, and there’s a quiet, melancholic dignity to her voice. This was nominated for several prizes in Australia, where Farr is from, but has been unfairly overlooked elsewhere.
“I once again wring magic from the wires by simply plucking and stroking my fingers in the aether.”
“I felt the rush of the electrical field through my body. I felt like a god. I felt like a queen. I felt like a conqueror. And I wanted to play it forever.”
“All of the stories of my life have begun and ended with the ocean.”
The Life and Loves of Lena Gaunt was published in the UK by Aardvark Bureau in 2016. My thanks to the publisher for a free copy for review.
The Invisible Bridge by Julie Orringer (2010)
It’s all too easy to burn out on World War II narratives these days, but this is among the very best I’ve read. It bears similarities to other war sagas such as Birdsong and All the Light We Cannot See, but the focus on the Hungarian Jewish experience was new for me. Although there are brief glimpses backwards and forwards, most of the 750-page book is set during the years 1937–45, as Andras Lévi travels from Budapest to Paris to study architecture, falls in love with an older woman who runs a ballet school, and – along with his parents, brothers, and friends – has to adjust to the increasingly strict constraints on Jews across Europe.
A story of survival against all the odds, this doesn’t get especially dark until the last sixth or so, and doesn’t stay really dark for long. So if you think you can’t handle another Holocaust story, I’d encourage you to make an exception for Orringer’s impeccably researched and plotted novel. Even in labor camps, there are flashes of levity, like the satirical newspapers that Andras and a friend distribute among their fellow conscripts, while the knowledge that the family line continues into the present day provides a hopeful ending.
This is a flawless blend of family legend, wider history, and a good old-fashioned love story. I read the first 70 pages on the plane back from America but would have liked to find more excuses to read great big chunks of it at once. Sinking deep into an armchair with a doorstopper is a perfect summer activity (though also winter … any time, really). [First recommended to me by Andrea Borod (aka the Book Dumpling) over five years ago.]
“He felt the stirring of a new ache, something like homesickness but located deeper in his mind; it was an ache for the time when his heart had been a simple and satisfied thing, small as the green apples that grew in his father’s orchard.”
“[It] seemed to be one of the central truths of his life: that in any moment of happiness there was a reminder of bitterness or tragedy, like the ten plague drops spilled from the Passover cup, or the taste of wormwood in absinthe that no amount of sugar could disguise.”
“For years now, he understood at last, he’d had to cultivate the habit of blind hope. It had become as natural to him as breathing.”