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.
We found Hay-on-Wye fairly bustling on an early September weekend. Not all of the bookshops are operational or have reliable opening hours, so we missed our chance to go in a few of them this time. Still, nine was plenty to be getting on with. The castle currently has scaffolding up for necessary renovations, and many eateries were offering little or no indoor table service. Masks are not actually compulsory in Wales, but we wore ours inside shops anyway, and half or more of the other customers and booksellers were doing the same.
Day 1: Drive there; Clock Tower Books, Oxfam, a great haul from the honesty shelves by the Castle (everything’s £1); ice cream cones from Shepherds; dinner at The Globe.
Day 2: A walk up Hay Bluff; roast lunch at the Three Tuns pub; Broad Street Book Centre, Hay Cinema Bookshop.
Day 3: Cinema outdoor area, Booth’s, British Red Cross shop, back to Oxfam, back to Clock Tower Books, Green Ink Booksellers; ice cream cones from Shepherds (again); drive home.
“To look for a specific book in Hay is a hopeless task; you can only find the books that are looking for you, the ones you didn’t even know to ask for in the first place. … What you mean to find matters less than what you do find.”
~Sixpence House: Lost in a Town of Books, Paul Collins (see below)
I bought 26 books in total (though one is an omnibus, so you could call it 28), at an average spend of £1.81 per volume. (My husband bought 10 nature books. We also found a gift for my father-in-law’s birthday next week – whew!) I’m particularly pleased with the Robertson Davies novels and the memoirs, some of which have been on my wish list for a long time. My interests in animals plus foodie and medical themes come through clearly. Some authors here I’ve never tried but have been meaning to; others are familiar names I was interested to read more by. I only noticed later on that Ghosts, the John Fuller poetry book, is a signed copy.
What I read
From last year’s book haul: The first 30 or so pages in Ingenious Pain by Andrew Miller and Jesus Land by Julia Scheeres. I’ll probably only skim the Spowers travel book (another one I only just noticed is signed). I have to read a different Dunmore first, towards my Women’s Prize reading project, as it’s requested after me at the library, but I’ll try to get to Talking to the Dead before too much longer.
I got through another 90 pages in Mike Parker’s On the Red Hill, about life in the house he and his partner inherited in the Welsh countryside from another gay couple. I also read about half of Tilly and the Lost Fairy Tales, Anna James’s second middle-grade novel about a girl who disappears into books and interacts with the characters, and the remainder of A.N. Wilson’s The Tabitha Stories, a cute chapter book with illustrations about a kitten learning how to be a cat.
Mostly, I focused on rereading the whole of Paul Collins’s memoir Sixpence House. I’ve listed this as one of the landmark books in my life because, as I was getting ready for my year abroad in England in the late summer of 2003, it was one of the books that whetted my appetite for traveling, and particularly for visiting Hay-on-Wye. (We first went in 2004; this was our seventh trip.)
In 2000 Collins moved from San Francisco to Hay with his wife and toddler son, hoping to make a life there. His parents were British and he’d enjoyed trips to the Book Town before, so it wasn’t a completely random choice. The place suited his interest in the oddities and obscure figures of literature and history. In fact, he’d just finished writing Banvard’s Folly, a fun book containing 13 profiles of thinkers and inventors whose great ideas flopped. (I should reread it, too.)
As he edits his manuscript and hunts for the perfect cover and title, he is also unexpectedly drawn into working for Richard Booth, the eccentric bookseller who was responsible for creating the world’s first book town and crowned himself King of Hay. Booth hired him to sort out the American Studies section – but if you ever went in the pre-2007 Booth’s you’ll know how impossible it would have been to make order out of its chaos. He comes across lots of interesting books time has forgotten, though (I first learned about W.N.P. Barbellion’s The Journal of a Disappointed Man from this book; why have I still not read it?!), and muses on counterfeiting, cover designs, bookbinding, and the sadness of the remainders bin.
Renting an apartment above Pembertons, which no longer exists but was at that time the town’s only new bookshop, Collins and his wife look at various properties and fall in love with a former pub. But when the survey comes back, they realize fixing all the damp and rot would nearly double its £125,000 price tag. (That sure looks good these days! The B&B next to the Airbnb flat where we stayed was for sale for over £700,000. Cusop Dingle is full of large, posh houses – Collins’s landlady referred to it as the “Beverly Hills of Hay.”) Buying one of the new-build houses on the edge of town just isn’t their dream.
In the end, after six months or so in Hay, they admit defeat and move back to the States. So in a sense this is – just like Banvard’s Folly, the book being shepherded into publication within it – a book about an experiment that turned out to be a noble failure. It’s warm, funny in a Bryson-esque way, and nostalgic for a place that still exists but a time that never will again. I loved spotting familiar landmarks, even if the shops have changed hands or are no longer there. This was probably my fourth read, but it all still felt fresh. An enduring favorite of mine.
I’d be intrigued to know what Collins would make of Hay 20 years later. In 2000 it had 40 bookshops; now it’s only 12, with online sellers, book-related businesses, and shops further afield pushing the listings in the annual leaflet to 26. Whereas then Collins felt they were the only young family in town, it’s very much a hipster place now and we saw many groups of teens and twentysomethings. A tapas bar, boutique stores, turmeric chai lattes … it’s not just a musty antiquarian book lover’s paradise anymore, and that might sadden some like Collins. Yet gentrification and the Festival may be the only things that have kept the town alive. Richard Booth died last year, but the book town vision should live on.
I miss Hay already. I hate to think of all the time that might pass before I can get there again, and what will (or won’t) have changed by then. A few years can seem to go by in an instant these days. My vow is to go again before I turn 40.