Tag Archives: Barbellion Prize

Barbellion Prize Shortlist Reviews: Ultimatum Orangutan & What Willow Says

The shortlist for the second annual Barbellion Prize was announced earlier this month. I had already read one of the books, and publishers have kindly sent me two of the others for review. Still in the running this year are two novels, a poetry collection and a memoir (you can read a bit more about the longlist here).

 

Ultimatum Orangutan by Khairani Barokka (2021)

Barokka is an Indonesian poet and performance artist based in London. The topics of her second collection include chronic pain, the oppression of women, and the environmental crisis. While she’s distressed at the exploitation of nature, she sprinkles in humanist reminders of Indigenous peoples whose needs should also be valued. For instance, in the title poem, whose points of reference range from King Kong to palm oil plantations, she acknowledges that orangutans must be saved, but that people are also suffering in her native Indonesia. It’s a subtle plea for balanced consideration.

An early sequence about a visit to a Natural History Museum exemplifies the blend of themes. From her wheelchair, the poet ponders “the event” that killed the dinosaurs and human bias towards fellow vertebrates. Why can’t we appreciate a tiger for its own sake rather than its cultural and metaphorical associations? she asks in the following poem.

Medical realities aren’t as prominent as in some nominees – nowhere is it made clear what condition Okka has – but illness haunts certain lines: “my pills lie as armor with so many / glasses of water, upright and tensile / to save life against terrors by way / of circulatory relief” (from “on lying down, apocalyptic”). Concern about the environment also tips over into the apocalyptic in “situation report” and below:

“Fence and Repetition” sets out a palindrome of lines, and later on there are a golden shovel and an abecedarian, with tips of the hat to other poets. This more formal verse is in contrast with looser poems lacking capitalization or articles; in places the language even reads like pidgin. I found the phrasing unusual, forcing close attention to what’s actually going on. This wasn’t generally my cup of tea, but makes a striking entry on this year’s shortlist, and was a good chance to add my first Indonesian writer to my internal library.

With thanks to Nine Arches Press for the free copy for review.

 

What Willow Says by Lynn Buckle (2021)

This is a delicate novella about the bond between a grandmother and her eight-year-old granddaughter, who is deaf. After the death of the girl’s mother, Grandmother has been her primary guardian. She raises her on Irish legends and a love of nature, especially their local trees. They mourn when they see hedgerows needlessly flailed, and the girl often asks what her grandmother hears the trees saying. Because Grandmother narrates in the form of journal entries, there is dramatic irony between what readers learn and what she is not telling the little girl; we ache to think about what might happen for her in the future.

Yet Buckle takes care not to let the mood get too sombre, even though there is disquiet aplenty: empty housing blocks from the aftermath of the Celtic Tiger, rage at the stereotypes and ableism that the granddaughter faces, and the darkness of the myths surrounding the peat bogs and those who drown. This is mostly thanks to the lyrical writing wrapped around the six months or so of the action. Focusing on the relationship between these two, a lot of what happens is quiet and seasonal, from a picnic in the park to preparations for Christmas, but there is also a sign language class that introduces some other characters.

At points I found the prose too thick – it’s rare for me to come across vocabulary I don’t know and, especially in such a short book, terms like “ombrogenous mires,” “chironomy” and “sestude” stood out, not necessarily in a good way. But, overall, I enjoyed this study of other forms of communication – with hands, in writing, between humans and more-than-human nature, and perhaps even beyond the grave.

A favourite passage:

We struggle to hear in our household. Age, degeneration, aural complications and congenital conditions. Ignorance. We have confusing discussions, mistaken arrangements, and fights over hearing aid batteries. Plus, the convenience of not hearing when it suits us. Now we are trying to listen, to each other, and to trees. There is so much that we have never heard, so little time to hear it.

With thanks to Époque Press for the free copy for review.

 

The other two books on the shortlist are:

A Still Life: A Memoir by Josie George (Bloomsbury)
My TLS review excerpt: Chronic illness long ago reduced her territory to her home and garden. The magic of A Still Life is in how she finds joy and purpose despite extreme limitations. Opening on New Year’s Day and travelling from one winter to the next, the book is a window onto George’s quiet existence as well as the turning of the seasons.

Duck Feet by Ely Percy (Monstrous Regiment)
From the synopsis: “A coming-of-age novel, set in the mid-noughties in Renfrew and Paisley, Scotland. … This book is a celebration of youth in an ever-changing world. It uses humour to tackle hard-hitting subjects such as drugs, bullying, sexuality, and teenage pregnancy.”


I haven’t had a chance to read Duck Feet, so it’s hard to make any predictions about the winner. Last year a memoir by a woman won, so I’m not sure A Still Life will win, even though it’s my clear favourite of the three I’ve read. Perhaps it will be a novel this year?


The Barbellion Prize, awarded “to an author whose work has best represented the experience of chronic illness and/or disability,” will be announced on 12 February.

Do any of the shortlisted books appeal to you?

A Look Back at My 2021 Reading: Statistics and Superlatives

I hope everyone passed a lovely holiday week. We had house guests for a few days over New Year’s, so I haven’t had a chance to work up my statistics until now. Marcie sent me a spreadsheet template to keep track of my reading, and my tech whiz husband helped analyze the data. I look forward to catching up on everyone else’s best-of and stats posts, too.

 

How I did with my 2021 goals

My simple reading goals for 2021 were to read more biographies, classics, doorstoppers and travel books – genres that tend to sit on my shelves unread. I read one biography in graphic novel form (Orwell by Pierre Christin), but otherwise didn’t manage any. I only read three doorstoppers the whole year, but 29 classics – defining them is always a nebulous matter, but I’m going with books from before 1980 – a number I’m happy with.

Surprisingly, I did the best with travel books, perhaps because I’ve started thinking about travel writing more broadly and not just as a white man going to the other side of the world and seeing exotic things, since I don’t often enjoy such narratives. Granted, I did read a few like that, and they were exceptional (The Glitter in the Green by Jon Dunn, The Shadow of the Sun by Ryszard Kapuściński and Kings of the Yukon by Adam Weymouth), but if I include essays, memoirs and poetry with significant place-based and migration themes, I was at 26.

 

The numbers

Exactly the same total as last year (2019 had my maximum-ever of 343). From those three years’ evidence, I’d say I’ve found my natural limit. Next year I will aim for 340 again.

(This is what my lifestyle allows; yours is likely very different. I have bookish friends who read 80 books a year, 120, 150, 180, 200, and so on. My very busy university lecturer/town councillor husband felt bad for ‘only’ reading 65 books this past year, but keep in mind that the average person reads just 12 per year. My message to you, no matter your numbers, is YOU READ LOADS!)

 

Fiction: 49.7% (6.5% graphic novels; 5.3% short stories)

Nonfiction: 35%

Poetry: 15.3%

(Fiction and nonfiction are usually just about equal for me; I’m surprised that fiction pulled well ahead this year. I also read a bit more poetry this year than last.)

 

Female author: 66.47%

Male author: 30%

Nonbinary author: 0.88% (Meg-John Barker, Alice Hattrick and Olivia Laing)

Multiple genders (in anthologies): 2.65%

(I’ve been reading more and more by women each year, but this is the first time that female + nonbinary authors have outnumbered men by more than 2:1. I mostly attribute this to my interest in women’s stories. There were also three trans authors on my list.)

 

BIPOC author: 18.5%

(The first time I have specifically tracked this figure. Not too bad, but I’d prefer 25% or higher.)

 

Work in translation: 5%

(A decline from last year’s 7.2%. Must try harder!)

 

E-books: 13.2%

Print books: 86.8%

(Slightly higher than last year because of my new reviewing gig for Shelf Awareness, for which I read almost exclusively e-books.)

 

2021 releases: 41.8% (add in the 2020 releases and it’s 54.4%)

Pre-release books: 20%

 

Rereads: 12 (3.5%)

 

Where my books came from for the whole year:

  • Free print or e-copy from publisher: 31.8%
  • Public library: 24.7%
  • Secondhand purchase: 16.8%
  • Free (The Book Thing of Baltimore, the free mall bookshop, a giveaway, Little Free Libraries, etc.): 9.4%
  • Downloaded from NetGalley or Edelweiss: 5.9%
  • New purchase (sometimes at a bargain price): 5.6%
  • University library: 3.8%
  • Gifts: 2%

(Decreased from last year: review copies, NetGalley/Edelweiss, gifts; increased from last year: library borrowing, new and secondhand purchases, free books.)

 

Additional statistics courtesy of Goodreads:

73,520 pages read

Average book length: 216 pages (thank you, novellas and poetry!)

Average rating for 2021: 3.7

 

Extra Superlatives

First book completed:

 

 

 

 

Last book completed (also the shortest, at 46 pages)

 

 

 

 

Longest book, at 628 pages:

 

 

 

 

 

Authors I read the most by: Anne Tyler (5), thanks to Liz’s readalong project; Jim Davis and Alice Oseman cartoons (4 volumes each); Jim Crumley nature books and Emily Rapp Black memoirs (3 each)

Publishers I read the most from: Carcanet (18), then Picador (17), then Bloomsbury and Faber (14 each); in overall first place was undoubtedly Penguin and its many imprints.

 

My top discovery of the year: the Heartstopper teen graphic novel series.

My proudest bookish achievement: being asked to be a judge for the McKitterick Prize.

 

The books that made me laugh the most: The Echo Chamber by John Boyne and Early Morning Riser by Katherine Heiny.

Best book club selections: The Light Years by Elizabeth Jane Howard, Woman on the Edge of Time by Marge Piercy, The Year of Living Danishly by Helen Russell.

 

Most genuinely helpful book: How to Talk to a Science Denier by Lee McIntyre.

 

 

 

 

Best last lines encountered: “So where are we gonna go? / I don’t know. Let’s just drive and find out.” (from Heartstopper, Volume 4 by Alice Oseman).

 

Best 2021 book title: Mrs Death Misses Death.

 

 

 

 

Shortest book title encountered: In (Will McPhail), followed by Lot (Bryan Washington).

Biggest disappointments: Some of my lowest ratings went to Indelicacy by Amina Cain, Klara and the Sun by Kazuo Ishiguro, and Ness by Robert Macfarlane.

 

A 2021 book that everyone loved but me: The Lincoln Highway by Amor Towles.

 

Themes that kept turning up in my reading: Covid-19, colours (thanks to my summer reading challenge), disability (thanks to shadowing the Barbellion Prize), the mental and physical health benefits of time in nature; perennial topics like friendship, parenting and sisterhood.

My Most Memorable Backlist Reads of 2021

Like many bloggers, I’m irresistibly drawn to the new books released each year. However, I consistently find that many of my most memorable reads were published years or decades ago. These 19 selections, in alphabetical order within genre, together with my Best of 2021 posts (fiction and nonfiction), make up the top 15% of my reading for the year. Three of the below were rereads.

(The three books not pictured were read electronically or from the library.)

 

Fiction

America Is Not the Heart by Elaine Castillo: Set in the early 1990s in the Filipino immigrant neighbourhoods of the Bay Area in California, this is a complex, confident debut novel that throws you into an unfamiliar culture at the deep end. The characters shine and the dialogue feels utterly authentic in this fresh immigration story.

 

Snow Falling on Cedars by David Guterson: The mystery element held me completely gripped – readers are just as in the dark as jurors until close to the end – but this is mostly a powerful picture of the lasting effects of racism. I was instantly immersed, whether in a warm courtroom with a snowstorm swirling outside or on a troop ship entering the Pacific Theater.

 

Nothing but Blue Sky by Kathleen MacMahon: David is back on Spain’s Costa Brava, where he and his wife Mary Rose holidayed every summer for 20 years. This is a quiet novel about what goes unsaid in any marriage, and a deeply touching look at loss and what comes next. Grief, memory, fate: some of my favourite themes, elegantly treated.

 

A Feather on the Breath of God by Sigrid Nunez: From the little I know of Nunez, this seems close to autofiction, especially in terms of her parents. Identifying the self by the key relationships and obsessions of a life makes sense, and this speaks to the universals of how we cope with a troublesome past. It cemented her as one of my favourite authors.

 

Woman on the Edge of Time by Marge Piercy: An unusual and fascinating novel with hints of science fiction, but still grounded in the real world, this contrasts utopian and dystopian scenes experienced by a Latina woman who’s been confined to a mental hospital. It’s an intense cultural commentary from a writer ahead of her time on gender roles and the environment.

 

My Dark Vanessa by Kate Elizabeth Russell: Obsessed with Lolita since she was a teenager, Russell decided to tell the teenage girl’s side of the story. She uses a dual timeline to great effect, creating an utterly immersive novel – as good a first-person narrative as anything Curtis Sittenfeld has ever written, and the ultimate #MeToo story.

 

Saint Maybe by Anne Tyler: Ian Bedloe joins the puritanical Church of the Second Chance and drops out of college to help his parents raise his late brother’s three children. Anyone will be able to find themselves and their family in this story of the life chosen versus the life fallen into, and the difficult necessity of moving past regrets in the search for meaning.

 

The Amateur Marriage by Anne Tyler: Unique in her oeuvre for how it bridges historical fiction and her more typical contemporary commentary. The Antons muddle their way through a volatile marriage for decades without figuring out how to change anything for the better. There is deep compassion for their foibles and how they affect the next generation.

 

Lot by Bryan Washington: The musical equivalent might be a mixtape blasted from an open-top Corvette while touring the streets of Houston, Texas. Drug dealers, careworn immigrants, and prostitutes: Even the toughest guys have tender hearts in these 13 stories. Washington’s prose is earthy and slang-filled. The matter-of-fact phrasing made me laugh.

 

Ethan Frome by Edith Wharton: I was so impressed by this condensed tragedy and the ambiance of a harsh New England winter. It struck me even more on a reread as a flawless parable of a man imprisoned by circumstance and punished for wanting more. A perfect example of how literature can encapsulate the human condition.

 

Poetry

The Air Year by Caroline Bird: I read this with a big smile on my face, delighting in the clever and playful poems. The impermanence of relationships is a recurring theme. Dreams and miscommunication are also common elements, and lists grow increasingly absurd. I particularly liked where structure creates meaning, e.g. the mise en abyme of “Dive Bar.”

 

Nonfiction

Featherhood by Charlie Gilmour: As an aimless twentysomething, Gilmour tried to rekindle a relationship with his unreliable poet father. Meanwhile, he was raising Benzene, a magpie that fell out of its nest. He makes elegant use of connections and metaphors; he’s so good at scenes, dialogue, and emotion – a truly natural writer.

 

Spring in Washington by Louis J. Halle: From first migrant in February to last in June, the author traced the D.C. spring of 1945 mostly through the birds that he saw. More so than the specific observations of familiar places, though, I valued the philosophical outlook. For me this was an ideal combination of thoughtful prose and vicarious travel.

 

The Shadow of the Sun by Ryszard Kapuściński: This collection of essays spans decades and lots of African countries, yet feels like a cohesive narrative. Kapuściński saw many places right on the cusp of independence or in the midst of coup d’états. I appreciated how he never resorts to stereotypes or flattens differences. One of the few best travel books I’ve read.

 

Golem Girl by Riva Lehrer: Lehrer has endured dozens of surgeries for spina bifida. Her touching family memoir is delivered in short, essay-like chapters, most named after books or films. It is also a primer in Disability theory and a miniature art gallery, filled with reproductions of her paintings. This inaugural Barbellion Prize winner is not to be missed.

 

The Cost of Living by Deborah Levy: This sparse volume, the middle in an autobiographical trilogy, has Levy searching for the intellectual and physical freedom needed to reinvent her life after divorce. It is made up of conversations and memories; travels and quotations that have stuck with her. Each moment is perfectly chosen to reveal the self.

 

Conundrum by Jan Morris: Morris was a trans pioneer; this transformed my understanding of gender when I first read it in 2006. Born James, Morris knew by age four that she was really a girl. A journalism career, marriage, five children, and two decades of hormone therapy preceded sex reassignment surgery. She paints hers as a spiritual quest toward her true identity.

 

You’re Not Listening: What You’re Missing and Why It Matters by Kate Murphy: We all fail to listen properly sometimes, for various reasons. A New York Times journalist, Murphy does a lot of listening to her interview subjects.  She also talks with representatives of so-called listening careers. This is a short, interesting, and genuinely helpful self-help book.

 

Writing in the Dust: After September 11 by Rowan Williams: Williams, then Archbishop of Wales, was in New York City on 9/11, just a few blocks from the World Trade Center. In the months that followed he pondered suffering, peacemaking, and the ways of God. He cautions against labelling the Other as Evil and responding with retribution. A superb book-length essay.

 

And if I really had to limit myself to just two favourites – my very best fiction and nonfiction reads of the year – they would be Snow Falling on Cedars and The Cost of Living.


What were your best backlist reads this year?

Merry Christmas!

(I’ll be back on the 27th with Love Your Library, then I have various year-end superlatives and statistics posts going through the 31st.)

The Barbellion Prize 2021 Longlist

This is the second year that the Barbellion Prize will be awarded “to an author whose work has best represented the experience of chronic illness and/or disability.” It was a joy to read the entire shortlist for the inaugural prize this past February and support the well-deserved win of Riva Lehrer for Golem Girl. I’ll be following the 2021–22 race with interest again, not least because one of the three judges is a long-time blogger friend of mine, Eleanor Franzen.

This year’s longlist looks fascinating: it contains fiction, poetry and memoir, and includes two works in translation. I happen to have already read the three nonfiction selections, but hadn’t heard of the other nominees.


Click on any title below for more information from the publisher website.

 

Ultimatum Orangutan by Khairani Barokka (Nine Arches Press)

From the synopsis: “Barokka’s second poetry collection is an intricate exploration of colonialism and environmental injustice … Through these defiant, potent verses, the body—particularly the disabled body—is centred as an ecosystem in its own right.”

 

What Willow Says by Lynn Buckle (Époque Press)

From the synopsis: “Sharing stories of myths, legends and ancient bogs, a deaf child and her grandmother experiment with the lyrical beauty of sign language. A poignant tale of family bonding and the quiet acceptance of change.”

 

A Still Life: A Memoir by Josie George (Bloomsbury)
Excerpt from my TLS review: Chronic illness long ago reduced George’s territory to her home and garden. The magic of A Still Life is in how she finds joy and purpose despite extreme limitations. Opening on New Year’s Day and travelling from one winter to the next, the book is a window onto her quiet existence as well as the turning of the seasons. (One of my favourites of the year.)

 

I Live a Life Like Yours: A Memoir by Jan Grue (Farrar, Straus and Giroux, and Pushkin Press). Translated by B. L. Crook
Excerpt from my Shelf Awareness review: The University of Oslo professor was diagnosed with spinal muscular atrophy at age three and relies on an electric wheelchair. In his powerful, matter-of-fact memoir, he alternates between his own story and others’, doctors’ reports and theorists’ quotations, mingling the academic and the intimate.

 

Ill Feelings by Alice Hattrick (Fitzcarraldo Editions)
Excerpt from my blog review: Hattrick and their mother share a ME/CFS diagnosis. The book searches desultorily for medical answers but ultimately rests in mystery. Into a family story, Hattrick weaves the lives and writings of chronically ill women such as Elizabeth Barrett Browning, Alice James and Virginia Woolf.

 

The Coward by Jarred McGinnis (Canongate)

​From the synopsis: “After a car accident Jarred discovers he’ll never walk again. … Add in a shoplifting habit, an addiction to painkillers and the fact that total strangers now treat him like he’s an idiot, it’s a recipe for self-destruction. How can he stop himself careering out of control?”

 

Duck Feet by Ely Percy (Monstrous Regiment)
From the synopsis: “A coming-of-age novel, set in the mid-noughties in Renfrew and Paisley, Scotland. … This book is a celebration of youth in an ever-changing world. It uses humour to tackle hard-hitting subjects such as drugs, bullying, sexuality, and teenage pregnancy.”

 

Elena Knows by Claudia Piñeiro (Charco Press). Translated by Frances Riddle

From the synopsis: “After Rita is found dead in the bell tower of the church she used to attend, the official investigation into the incident is quickly closed. Her sickly mother is the only person still determined to find the culprit.”

 

I’m most keen to read Ultimatum Orangutan (that title!), but would gladly read any of the new-to-me titles. The shortlist will be announced in January 2022.

 

Do any of the nominees appeal to you?

December Reading Plans

Blogging, and especially hosting Novellas in November – which was a roaring success, for which I am grateful! – has felt like a full-time job at points over the past month.

It was a record-breaking month in terms of my reading total, and I also wrote 24 blog posts. What with all the novellas, a focus on nonfiction review books, and a few rereads, I was able to contribute to several challenges in addition to #NovNov, such as Nonfiction November, German Literature Month, and Margaret Atwood Reading Month.

November was extra stressful for me because of trying to buy a house, starting my McKitterick Prize judging, and my mother being in and out of hospital since September. I know I’m not the only one feeling burnt out after a busy month. I now need to focus on paid work so I can take my upcoming two weeks in the USA off.

So, for December’s reading, the plan is mostly to finish a good number of 2021 releases and review copies currently on the go. Here’s my planned set:

I will also likely slip in a few novella-length Christmas or winter books; my first is An Advent Calendar by Shena Mackay.

Meanwhile, the books keep coming in. This was my belated birthday and early Christmas haul from a holiday get-together with family over here:

I actually contemplated taking a complete break from blogging in December, but I still have a number of review copies I owe feedback on, as well as other ideas for themed posts that I want to fit in. Plus drawing up the Best-of lists and statistics is my favourite task of the blogging year, so I wouldn’t want to miss out on the fun. But I will definitely be scaling back this month, especially during our time in the States.

In other news, today it’s off to London for my first time since December 2019 (and only my second time on a train since then). We will have a nice chilly walk along the river from Richmond to Ham House and then grab a meal at a vegan diner before at last getting to go to our several-times-delayed Bell X1 gig at Union Chapel.

Lots of other good stuff coming up in the next week and a half, too, including a few Christmas concerts, a book club get-together, and the Barbellion Prize longlist, which is due out on the 13th.

 

Happy December reading!

February Releases by de Visser, George, Lawson, and Smiley

Nonfiction about doctors’ memorable patients and a life of chronic pain and disability; novels set in 1970s Canada and contemporary (but magically outside-of-time) Paris.

 

That One Patient: Doctors’ and nurses’ stories of the patients who changed their lives forever by Ellen de Visser

[Translated from the Dutch by Brent Annable]

Ellen de Visser is a science writer for the most popular newspaper in the Netherlands, De Volkskrant. Her “That One Patient” column, which began in the summer of 2017, turns interviews with medical professionals into punchy first-person narratives. A collection of them was published in Dutch in 2019. This English translation tacks on 10 additional pieces based on conversations with English and American practitioners (including Dr. Anthony Fauci, immunologist and presidential medical advisor), four of them explicitly reflecting on COVID-19.

Many of the cases are decades old yet stuck with the doctor or nurse in question because of a vital lesson learned. Overtreatment is regretted just as much as an omission of care. Again and again, these medical professionals conclude that it’s impossible to judge someone else’s decisions or quality of life. For instance, a surgeon admits he had a hard time empathizing with his obese patients undergoing stomach reduction until he followed up with a young woman who told him about how invisible she’d felt before her surgery. Premature and disabled children bring grief or joy, not always in the expected doses. A doctor resents the work his team puts into repairing a woman who jumped from an eighth-floor window – why the heroic measures for someone who wanted to die? – until he learns she was pushed. A cancer surgeon develops breast cancer and now knows exactly what her patients go through.

Some of these stories are disturbing: being stalked by a patient with a personality disorder, a man poisoning his girlfriend, a farmer predicting the very day and time of his death. A gynaecologist changes his mind about abortion after he meets a 15-year-old who gave birth at home and left her baby outside in a plastic bag to die of exposure. Other pieces are heart-warming: A paramedic delivers a premature, breech baby right in the ambulance. Staff throw a wedding at the hospital for a dying teen (as in Dear Life by Rachel Clarke). A woman diagnosed with cancer while pregnant has chemotherapy and a healthy baby – now a teenager. There’s even a tale from a vet who crowdfunded prostheses for a lively terrier.

One unique thing about the Netherlands is that euthanasia is legal and provided by doctors upon the express request of a patient suffering from a terminal illness. It is taken for granted in these essays, yet some interviewees express their discomfort with it as an option for young patients. De Visser is careful to note that, even with the situation as it is, only 4% of deaths in the Netherlands are by euthanasia, and the majority of these are end-stage cancer cases.

As with any collection of this nature, some stories are more enticing than others, but overall I found it a surprising and moving set of reflections that is alive to ethical complexities and grapples with tough issues like disability, doctor error, loneliness, pain, and sense of purpose.

Two quotes, in particular, stood out to me, one from a nurse – “We are only ever guests in other people’s lives, and that’s how we ought to behave” – and the other from Dr. Fauci’s piece. In 2014 he treated a doctor who had been volunteering in Sierra Leone after an Ebola outbreak but became ill with the virus and had to be evacuated. “He cited Hippocrates: ‘It is far more important to know what sort of person has the disease, rather than what sort of disease the person has.’ You treated me like a person, not a disease, he said. And that’s what medicine is all about.”

With thanks to 4th Estate for the proof copy for review.

 

A Still Life: A Memoir by Josie George

Over a year of lockdowns, many of us have become accustomed to spending most of the time at home. But for Josie George, social isolation is nothing new. Chronic illness long ago reduced her territory to her home and garden. The magic of A Still Life is in how she finds joy and purpose despite extreme limitations. Opening on New Year’s Day and travelling from one winter to the next, the book is a window onto George’s quiet existence as well as the turning of the seasons. (My full review will appear in a forthcoming issue of the Times Literary Supplement. See also Eleanor’s thorough review.) This is top of my wish list for next year’s Barbellion Prize shortlist.

With thanks to Bloomsbury for the proof copy for review.

 

A Town Called Solace by Mary Lawson

I discovered Mary Lawson in 2015 with Road Ends and caught up with Crow Lake in the summer of 2019. All four of her books are set in fictional locations inspired by the villages and rural areas of Northern Ontario, where the author grew up before moving to England in 1968. So Solace, while not a real town, is true to her memory and, despite the sometimes gruff or know-it-all locals, an emotional landmark for the three central characters, all of whom are processing trauma and looking for places of comfort where they can start over.

1972. First we meet Clara, a plucky seven-year-old sitting vigil. She’s waiting for the return of two people: her sixteen-year-old sister, Rose, who ran away from home; and their next-door neighbour, Mrs. Orchard, whose cat, Moses, she’s feeding until the old lady gets back from the hospital. As days turn into weeks, though, it seems less likely that either will come home, and one day Clara sees a strange man moving boxes around in Mrs. Orchard’s house. This is Liam Kane, who’s inherited the house from a family friend. In his thirties and recently divorced, he’s taking a break in this tiny town, never imagining that he might find a new life. The third protagonist, and only first-person narrator, is Elizabeth, who lies in a hospital bed with heart trouble and voices her memories as a monologue to her late husband.

As we cycle through these three characters’ perspectives in alternating chapters, we gradually come to understand the connections between them. There are satisfying parallels in that, on multiple occasions but in slightly different ways, a child attaches to an older person or an adult stands in as a guardian for a neglected child. All of Lawson’s creations, even the secondary figures, are dealing with distressing memories or a loss of some kind, the details of which might only emerge much later on. Solace offers myriad opportunities for recovery, whether kitty playtime at Mrs. Orchard’s or diner food and homemade ice cream.

Like Lawson’s other works, this is a slow burner featuring troubled families. Her characters, often full of regret and sorrow, take a shadowy past as a prompt to reset their lives. They’re charming in spite of their flaws. I recalled that Crow Lake also looks back to the climactic happenings experienced by a seven-year-old girl. And like Road Ends, A Town Called Solace makes a convincing case for present decisions being influenced by historical trauma. It’s a tender and inviting story I’d recommend to readers of Wendy McGrath and Anne Tyler, with Clever Girl by Tessa Hadley and Olive, Again by Elizabeth Strout as specific readalikes. (My dilemma now is whether to read my only remaining Lawson novel, The Other Side of the Bridge, right away or save it: she’s not the most prolific author, with four books in 19 years.)

A favorite passage:

[Liam’s] life prior to coming north seemed to be taking on the quality of an old movie, one in which he’d been deeply engrossed while watching it but which now seemed trivial, unconvincing and profoundly lacking in either colour or plot. Solace had colour and plot in spades, maybe too much. In every way it was coming to seem more real than Toronto, with its endless malls and traffic jams and high-powered jobs. Though maybe, if he went back to Toronto, the same would be true in reverse. Maybe when he’d been back for a couple of months he’d find that it was Solace that seemed unreal, its unremarkable streets and stores like something from a dream, its dramatic landscape fading to nothing, like a holiday photo left in the sun.

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

 

The Strays of Paris by Jane Smiley

(Published in the USA in December 2020 under the title Perestroika in Paris. It’s been given a The Boy, the Mole, the Fox and the Horse treatment for its UK release.)

My summary for Bookmarks magazine: “A racehorse, Perestroika—nicknamed Paras—strays from her unlocked suburban stable one day, carrying her groom’s purse in her mouth, and ends up in Paris’s Place du Trocadéro. Here she meets Frida the dog, Sid and Nancy the mallards, and Raoul the raven. Frida, whose homeless owner died, knows about money. She takes euros from the purse to buy food from a local market, while Paras gets treats from a baker on predawn walks. Etienne, an eight-year-old orphan who lives with his ancient great-grandmother, visits the snowy park to feed the wary animals (who can talk to each other), and offers Paras a home. A sweet fable for animal lovers.”

Yes, this is a talking animal book, but the animals only talk to each other; they communicate with humans through their gestures and soulful eyes. Kindly shopkeepers work out what Frida wants to buy based on what she stares at or points to with a paw; the baker whose window Paras passes on her early morning walks intuits that the horse is hungry; Etienne, who gives a couple of the stray animals a home during a chill winter, learns to understand when Paras needs to go out to relieve herself, after piles of dung build up in the sitting room.

I liked how patiently and convincingly Smiley builds the portrait of each character – human or animal – and the overall situation of kindness and good fortune. Raoul is particularly amusing for his birdsplaining: “It is a feature of age. I have learned so many things in my life that they just force their way out of my beak,” he says. However, a crow would be much more realistic for Paris (or any city) than a raven, and, overall, this was a little twee and farfetched for my tastes. It was nice to read something a bit different from Smiley, who I haven’t tried since her Last Hundred Years Trilogy. She has a sideline in YA horse novels; this should probably have been lumped with those. (Annabel liked it a bit more.)

I was sent an unsolicited review copy by Picador/Mantle.

 

What recent releases can you recommend?

The Barbellion Prize 2020 Winner

It has been a pleasure following the Barbellion Prize race this year. In case you haven’t already seen the news, the winner of the inaugural award is Golem Girl by Riva Lehrer (my review).

It’s not often that my favourite from a literary prize list is also the judges’ pick, so I’m particularly pleased that my prediction came true. The full announcement is here. Here’s what two of the judges had to say:

Assistant Professor of Literature Dr Shahd Alshammari: “Golem Girl is a memoir that is infused with art, life, discrimination, love, self-love, and what it means to be vulnerable. Disability is on every page—and that is the type of literature we need.”

Cat Mitchell, Lecturer and Programme Leader of the Writing and Publishing degree at the University of Derby: “Golem Girl is a powerful and wide-reaching account of a life lived with disability. By interweaving her writing and art, Riva explores queerness, community, society’s fear of difference, and the often problematic representation of disabled bodies in art and medicine.”

Professor Tom Shakespeare FBA, Professor of Disability Research at London School of Hygiene and Tropical Medicine, and an advisor to the Prize, added: “From Pope to Stevenson, Woolf to Plath, writers have lived with illness and disability for centuries. Now here comes exactly the right prize at the right time: disabled writers have been locked down far longer, and deserve far more recognition than they get. The Barbellion Prize deserves to succeed, and Riva Lehrer’s Golem Girl will put it on the map.”


To recap, the other three on the shortlist were:

It’s been quite the whirlwind reading and reviewing all four books as the first two review copies only arrived on the 28th of January. Most of my reviews got bunched up right in the 36 or so hours before the announcement, but I was relieved that I managed to get them all up in advance. The Prize basically has no budget, so when I approached Cat (who used to work in publicity at Penguin) and asked if I and a handful of other bloggers could get involved, I wasn’t sure if it would be a possibility. I was really grateful to the four publishers for being willing to supply review copies. I hope we have helped to get the word out there.


The Barbellion Prize is already accepting entries for the 2021 award (submissions close on 31 October; see the website for more information). On my wish list thus far are two excellent memoirs, Sanctuary by Emily Rapp Black, who has a prosthetic leg and lost her son to Tay-Sachs disease, and A Still Life by Josie George, who lives joyfully with chronic illness.

Other relevant 2021 releases I’m interested in getting hold of are: The Invention of Miracles: language, power, and Alexander Graham Bell’s quest to end deafness by Katie Booth, Places I’ve Taken My Body by Molly McCully Brown, What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller, and Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White.

 

Have you been inspired to read any of the shortlisted books?

Finishing Off the Barbellion Prize Shortlist: Sam Mills and Dr Amit Patel

The Barbellion Prize 2020 will be awarded tomorrow “to an author whose work has best represented the experience of chronic illness and/or disability.” (See also my reviews of Golem Girl by Riva Lehrer and Sanatorium by Abi Palmer.)


These two memoirs, though very different outwardly, both draw attention to the practical and emotional challenges of life with disability or a mental illness, and call for compassion from individuals and a commitment to help from governing bodies.

 

The Fragments of My Father: A memoir of madness, love and being a carer by Sam Mills

One in eight people in the UK cares for an ill or disabled relative. Sam Mills has been a carer for a parent – not once, but twice. The first time was for her mother, who had kidney cancer that spread to her lungs and died one Christmas. A few years later, Mills’s father, Edward, who has paranoid schizophrenia, started having catatonic episodes, as with the incident she opens her memoir on. In 2016, on what would have been her mother’s 70th birthday, Edward locked himself in the toilet of the family home in Surrey. Her brother had to break in with a screwdriver and ambulance staff took him away to a hospital. It wasn’t the first time he’d been institutionalized for a mental health crisis, nor would it be the last. It was always excruciating to decide whether he was better off at home or sectioned on a ward.

Mills darts between past and present as she contrasts her father’s recent condition with earlier points in their family life. She only learned about his diagnosis from her mother when, at age 14, she saw him walk down the stairs naked and then cry when he burned the chips. While schizophrenia can have a genetic element, relatives of a schizophrenic are also more likely to be high achievers. So, although Mills went through a time of suicidal depression as a teenager, meditation got her through and she exhibits more of the positive traits: An author of six books and founder of the small press Dodo Ink, she is creative and driven. Still, being her father’s full-time carer with few breaks often leaves her exhausted and overwhelmed.

The book’s two main points of reference are Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives and had to make difficult choices about their treatment and housing. In a nutshell, Mills concludes that Woolf was a good carer while Fitzgerald was a terrible one. Leonard was excused World War I service due to his nervous exhaustion from being a carer, and he gave up on the idea of children when doctors said that motherhood would be disastrous for Virginia. Virginia herself absolved Leonard in her suicide note, reassuring him that no couple could have been happier and that no one could have looked after her better. Scott, on the other hand, couldn’t cope with Zelda’s unpredictable behaviour – not least because of his own alcoholism – so had her locked up in expensive yet neglectful institutions and censored her work when it came too close to overlapping with his own plots.

The Fragments of My Father brings together a lot of my favourite topics to read about: grief, physical and mental illness, and literary biography. It had already been on my wish list since I first heard about it last year, but I’m glad the Barbellion Prize shortlisting gave me a chance to read it. It helps to have an interest in the Fitzgeralds and Woolfs – though in my case I had read a bit too extensively about them for this strand to feel fully fresh. (I also had a ‘TMI’ response to some revelations about the author’s relationships and sex life.)

Ultimately, I most appreciated the information on being a carer, including the mental burden and the financial and social resources available. (Although there is a government allowance for carers, Mills wasn’t eligible because of her freelance earnings, so she had to apply for Society of Authors grants instead.) With caring so common, especially for women, we need a safety net in place for all whose earnings and relationships will be affected by family duties. I read this with an eye to the future, knowing there’s every possibility that one day I’ll be a carer for a parent(-in-law) or spouse.

Readalikes I have also reviewed:

Favorite lines:

“had I ever made a conscious choice? Caring felt like something that was happening to me, as though my father’s illness had been an eruption that had flowed like lava over my life. … I can’t think of any other job where someone defines your role by conferring its title on you, as though they are holding out a mould that you must fill.”

“caring is rarely simple because its nature is not static. It creates routines, crafts the days into set shapes, lulls you into states of false security, and then mutates, slaps you with fresh challenges, leaves you lost just when you feel you have gained wisdom.”

With thanks to Fourth Estate for the free copy for review.

 

Kika & Me: How one extraordinary guide dog changed my world by Dr Amit Patel with Chris Manby

Dr Patel grew up in Guildford, studied medicine at Cambridge, and specialised in trauma medicine as a junior doctor in London. Diagnosed with keratocornus, which changes the shape of the cornea (it affects 1 in 450), he required first special contact lenses and then a series of cornea transplants. By the time of his eighth transplant, he’d remortgaged his house to pay an American specialist. Meeting and marrying Seema was a time of brightness before, in November 2013, he completely lost his vision within 36 hours. Blindness meant that he could no longer do his job, and constant eye pain and inactivity exacerbated his depression. While white cane and Braille training, plus the Royal National Institute of Blind People’s “Living with Sight Loss” course, started to boost his independence, it was being paired with his guide dog, Kika the Labrador, in 2015 that truly gave Patel his life back.

Trying out guide dogs sounds a little bit like speed dating. The Guide Dogs for the Blind Association (founded in the UK in 1931) warned that Kika was a “Marmite dog,” moody and likely to push boundaries; there was no guarantee she and Patel would get along. But from the start Kika was just right for him. More than once, what seemed like her pure stubbornness – lying on his feet and refusing to move – kept him from dangerous situations, like getting trapped between a busy road and a building site on an unfamiliar route. After a 10-day core skills training course, during which man and dog stayed at a hotel together, Kika was ready to join them at home. In the days to come, she would learn all Patel’s usual routes around their neighbourhood and into the City – with the help of smears of mackerel pâté.

If you’re like me, you’ll be most curious to learn about the nitty-gritty of life for a visually impaired person. I loved hearing about how Patel practiced his Braille letters with an egg container and ping pong balls. Since he went blind, he and his wife have had two children, and with Kika’s help manoeuvring a baby buggy is no problem. Guide dogs are trained to be predictable, e.g., doing their business in the same spot at the same times so it’s much easier to find and clean up. Some dog training tricks also worked for children, like putting a bell on a Labrador or a toddler to know when they wandered off!

Patel has had some unfortunate experiences since he went blind, particularly on the London Underground: teenagers picking him up and spinning him around on a train platform, busy commuters barging past him and Kika on an escalator, and an impatient woman hitting Kika with her handbag. While Patel doesn’t like being negative on social media, he finds that posting video clips of these incidents raises awareness of the challenges VIPs face. Every time he hits a setback, he uses it as an opportunity. For instance, one Diwali he was excited to visit Neasden Temple, only to be dismayed that they wouldn’t allow Kika inside. Since then, he has worked with temples around the world to improve disability services. He is also involved in London’s “Transport for All” work, and advises companies on access issues.

More so than the rest of the shortlist, Kika & Me is illuminating about daily life with a disability and has a campaigning focus. It’s an easy read, and not just for animal lovers. Judging the book by the cover, I might not have picked it up otherwise, so I’m grateful that the Barbellion put it on my radar. I’m deeply impressed by what Patel has achieved and the positive attitude he maintains. (Kika has her own Twitter account! @Kika_GuideDog)

With thanks to Pan Macmillan for the free copy for review.

 

(Fellow bloggers John Fish and Jackie Law have also been reading along with the Barbellion Prize shortlist. See their reviews thus far: John—Mills and Palmer; Jackie—Mills and Palmer.)

Next year the Barbellion Prize hopes to award more money, including to all nominated authors. They are accepting submissions for 2021, and are grateful for any Paypal donations via their website (see the page footer). I’ve donated to the cause. Can you help, too?

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.