Tag Archives: Ehlers-Danlos syndrome

20 Books of Summer, 14–16: Polly Atkin, Nan Shepherd and Susan Allen Toth

I’m still plugging away at the challenge. It’ll be down to the wire, but I should finish and review all 20 books by the 31st! Today I have a chronic illness memoir, a collection of poetry and prose pieces, and a reread of a cosy travel guide.

 

Some of Us Just Fall: On Nature and Not Getting Better by Polly Atkin (2023)

I was heartened to see this longlisted for the Wainwright Prize. It was a perfect opportunity to recognize the disabled/chronically ill experience of nature and the book achieves just what the award has recognised in recent years: the braiding together of life writing and place-based observation. (Wainwright has also done a great job on diversity this year: there are three books by BIPOC and five by women on the nature writing shortlist alone.)

Polly Atkin knew something was different about her body from a young age. She broke bones all the time, her first at 18 months when her older brother ran into her on his bicycle. But it wasn’t until her thirties that she knew what was wrong – Ehlers-Danlos syndrome and haemochromatosis – and developed strategies to mitigate the daily pain and the drains on her energy and mobility. “Correct diagnosis makes lives bearable,” she writes. “It gives you access to the right treatment. It gives you agency.”

The book assembles long-ish fragments, snippets from different points of her past alternating with what she sees on rambles near her home in Grasmere. She writes in some depth about Lake District literature: Thomas De Quincey as well as the Wordsworths – Atkin’s previous book is a biography of Dorothy Wordsworth that spotlights her experience with illness. In describing the desperately polluted state of Windermere, Atkin draws parallels with her condition (“Now I recognise my body as a precarious ecosystem”). Although she spurns the notion of the “Nature Cure,” swimming is a valuable therapy for her.

Theme justifies form here: “This is the chronic life, lived as repetition and variance, as sedimentation of broken moments, not as a linear progression.” For me, there was a bit too much particularity; if you don’t connect to the points of reference, there’s no way in and the danger arises of it all feeling indulgent. Besides, by the time I opened this I’d already read two Ehlers-Danlos memoirs (All My Wild Mothers by Victoria Bennett and Floppy by Alyssa Graybeal) and another reference soon came my way in The Invisible Kingdom by Meghan O’Rourke. So overfamiliarity was a problem. And by the time I forced myself to pick this off of my set-aside shelf and finish it, I’d read Nina Lohman’s stellar The Body Alone. For those newer to reading about chronic illness, though, especially if you also have an interest in the Lakes, it could be an eye-opener.

With thanks to Sceptre (Hodder) for the free copy for review.

 

Selected Prose & Poetry by Nan Shepherd (2023)

I’d read and enjoyed Shepherd’s The Living Mountain, which has surged in popularity as an early modern nature writing classic thanks to Robert Macfarlane et al. I’m not sure I’d go as far as the executor of the Nan Shepherd Estate, though, who describes her in the Preface as “Taylor Swift in hiking boots.” The pieces reprinted here are from her one published book of poems, In the Cairngorms, and the mixed-genre collection Wild Geese. There is also a 28-page “novella,” Descent from the Cross. After World War I, Elizabeth, a workers’ rights organiser for a paper mill, marries a shell-shocked veteran who wants to write a book but isn’t sure he has either the genius or the dedication. It’s interesting that Shepherd would write about a situation where the wife has the economic upper hand, but the tragedy of the sickly failed author put me in mind of George Gissing or D.H. Lawrence, so didn’t feel fresh. Going by length alone, I would have called this a short story, but I understand why it would be designated a novella, for the scope.

None of the miniature essays – field observations and character studies – stood out to me. About half of the book is given over to poetry. As with the nature writing, there is a feeling of mountain desolation. There are a lot of religious references and hints of the mystical, as in “The Bush,” which opens “In that pure ecstasy of light / The bush is burning bright. / Its substance is consumed away / And only form doth stay”. It’s a mixed bag: some feels very old-fashioned and sentimental, with every other line or, worse, every line rhyming, and some archaic wording and rather impenetrable Scots dialect. It could have been written 100 years before, by Robert Burns if not William Blake. But every so often there is a flash of brilliance. “Blackbird in Snow” is quite a nice one, and reminiscent of Thomas Hardy’s “The Darkling Thrush.” I even found the cryptic lines from “Real Presence” that inspired a song on David Gray’s Skellig. My favourite poem by far was:

Overall, this didn’t engage me; it’s only for Shepherd fanatics and completists. (Won from Galileo Publishers in a Twitter giveaway)

 

England As You Like It: An Independent Traveler’s Companion by Susan Allen Toth (1995)

A reread. As I was getting ready to go overseas for the first time in the summer of 2003, Toth’s trilogy of memoirs whetted my appetite for travel in Britain. (They’re on my Landmark Books in My Life, Part II list.) This is the middle book and probably the least interesting in that it mostly recounts stays in particular favourite locations, such as Dorset, the Highlands, and various sites in Cornwall. However, I’ve never forgotten her “thumbprint theory,” which means staying a week or more in an area no larger than her thumb covers on a large-scale map, driving an hour or less for day trips. Not for her those cram-it-all-in trips where you race through multiple countries in a week (I have American friends who did Paris, London and Rome within six days, or five countries in eight days; blame it on stingy vacation policies, I guess). Instead, she wants to really bed into one place and have the time to make serendipitous discoveries such as an obscure museum or a rare opening of a private garden.

I most liked the early general chapters about how to make air travel bearable, her obsession with maps, her preference for self-catering, and her tendency to take home edible souvenirs. Of course, all the “Floating Facts” are hopelessly out-of-date. This being the early to mid-1990s, she had to order paper catalogues to browse cottage options (I still did this for honeymoon prep in 2006–7) and make international phone calls to book accommodation. She recommends renting somewhere from the National Trust or Landmark Trust. Ordnance Survey maps could be special ordered from the British Travel Bookshop in New York City. Entry fees averaged a few pounds. It’s all so quaint! An Anglo-American time capsule of sorts. I’ve always sensed a kindred spirit in Toth, and those whose taste runs toward the old-fashioned will probably also find her a charming tour guide. I’ve also reviewed the third book, England for All Seasons. (Free from The Book Thing of Baltimore)

20 Books of Summer, 18–20: Ayanna Lloyd Banwo, Sarah Hall, Meghan O’Rourke

Whew, it’s the final day of the challenge and I’ve managed to finish and write up a last batch of two novels and one nonfiction work: a magic realist tableau of love and death in Trinidad, a fateful romance set against the backdrop of the construction of an English dam in 1936, and a personal and cultural record of chronic illness and its treatment in contemporary America.

 

When We Were Birds by Ayanna Lloyd Banwo (2022)

I was sent a copy as part of the McKitterick Prize shortlist. The setting of a cemetery, Fidelis in Port Angeles, Trinidad, had vaguely attracted me even before its nomination. Emmanuel Darwin has turned his back on his Rastafarian upbringing to cut off his dreadlocks and work as a gravedigger (any contact with the dead is anathema in the religion). Meanwhile, Yejide, who lives in the hills, is losing her mother, Petronella, and gaining a legacy she’s not sure she wants: the women of her family are caretakers of the souls of the dead, keeping them alive in exchange for protection. Like the corbeaux, dark counterparts of tropical parrots, they tread the border of life and death. As All Saints’ and All Souls’ Days draw closer, Darwin and Yejide together have to decide whether they will be swallowed by the graveyard or escape it. While this was atmospheric and had alluring elements, the speculative angle was not notably well realized and the particular form of patois – eschewing all possessives and most verb conjugations – drove me nuts. I skimmed this one. (Free from the Society of Authors)

 

Haweswater by Sarah Hall (2002)

I bought this in Cumbria one year and started reading it in Cumbria the next. Once I got home, however, there was little impetus to keep going. Were it not for the temporary local interest, I likely would not have finished this debut novel, which lurches between dry and melodramatic. As it is, I had to skim to the end. Had it been my first taste of Sarah Hall’s work, it might have put me off trying her again.

The frame is historical: Haweswater was indeed dammed to provide water for the city of Manchester in 1936, flooding the village of Mardale. Hall focuses on the people of Mardale, specifically the Lightburn family, who have persisted with farming despite its particular challenges in this hilly landscape. When Jack Liggett comes out from the City on behalf of the waterworks, he meets with hostility, including from the Lightburns’ daughter, Janet, who negotiates for their tenancy to continue until the dam is actually built. Then, well, you know, Romeo and Juliet and pride and prejudice and all that, and they start an affair. Hall has always written forthrightly about sex, starting here.

There’s a climactic final 60 pages in which three major characters die, two in symbolic acts of suicide, but it was a little too much tragedy, too late, for me after the dull midsection. I was intrigued, however, that a plot point turns on golden eagles being in the valley, as Wild Fell, another of my Haweswater-set reads, opens with the presence of the ghost of England’s last golden eagle, who vanished in 2015. This related snippet shows how over-the-top Hall’s use of dialect is: “Golden eagles wud be mor’less gone, gone or illegal these days, like, notta funni bizniz t’be gittin’ mixed up in, eh? What kinda daft bugger d’yer take mi for?” It’s like Thomas Hardy rustics – hard to take seriously. (Anne-Marie Sanderson’s haunting song “Haweswater” is based on the novel.) (Secondhand – Clutterbooks, Sedbergh, 2022)

 

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke (2022)

Well before I was a devoted follower of the Barbellion Prize for books on disability and chronic illness, I was interested in these topics. For much of her forties and fifties, my mother struggled with fibromyalgia, one of a suite of illnesses misunderstood or even dismissed by the medical profession (as O’Rourke puts it, with a tongue-in-cheek nod to Jane Austen: “it is a truth universally acknowledged among the chronically ill that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick”). I hope this National Book Award nominee goes some way toward convincing skeptics that these are real conditions to be addressed by listening to patients and treating them holistically.

In 2012 the author became seriously ill and spent much of her thirties in a fog of pain, spending the equivalent of several days per month at doctors’ appointments and agreeing to ever more bizarre treatments in her desperation. Some of her issues were autoimmune and/or genetic: Hashimoto’s (thyroid), Ehlers-Danlos, POTS, endometriosis. She also dealt with infertility at the same time as she was trying to get well enough to contemplate having children. For her, the turning point was when she was diagnosed with Lyme disease and put on antibiotics. (Later she would travel to London to get fecal microbiota transplants to restore her microbiome.) Chronic Lyme is similar to long COVID, the true extent of which we’re only just beginning to understand; reading a list of the symptoms, I was tempted to remotely/retrospectively diagnose a few people I know with one or the other. It can be ever so slightly miserable reading about navigating all of these conditions, though nowhere near as miserable as it must have been for O’Rourke to live through them, of course.

I knew the author for her exquisite memoir of losing her mother to cancer, The Long Goodbye. Here the writing is more functional and journalistic, but I was still impressed by the attention she pays and the connections she draws; she’s also a poet, so she’s open to emotions and keen to capture them in words. In the face of the unexplained, she contends, chronically ill people are searching for meaning and narrative (restitution, chaos or quest, as Arthur Frank named the three options). She probes her own psyche: “had I become trapped in my identity as a sick person, someone afraid of living? If my mission in life had been reduced to being well at all costs, then the illness had won.” There’s a good balance of research, personal experience and general reflection in this one. (Passed along by Laura – thank you!)

Related reads: Ill Feelings by Alice Hattrick, It’s All in Your Head by Suzanne O’Sullivan, Waiting for Superman by Tracie White

 

And that’s a wrap! My summer reading was a little scattered and not as thematic as initially planned, but I stuck to my pledge to read only print books that I owned, and then cleared half of them from my shelves through reselling or donating to the Little Free Library. I’ll definitely call that a win.

My favourite from the 20 was a novel, Search by Michelle Huneven, then Making the Beds for the Dead by Gillian Clarke (poetry), followed by two chef’s memoirs, A Cook’s Tour by Anthony Bourdain and Dirt by Bill Buford, and Dorthe Nors’ nature/travel essays. The one DNF and couple of skims are unfortunate, but these things happen.

Next year I fancy a completely open challenge – just, again, getting through books from my shelves. (Maybe all hardbacks?)

All My Wild Mothers by Victoria Bennett & I Have Some Questions for You by Rebecca Makkai

I’m catching up with reviews of two February releases that I spent the whole of last month submerged in. These are early entries on my Best of 2023 list: A lovely memoir about grief and gardening, caring for an ill child and a dying parent; and a riveting true crime-inspired novel, set on a boarding school campus, that rages at injustice and violence against women.

 

All My Wild Mothers: Motherhood, loss and an apothecary garden by Victoria Bennett

Early in February, I attended the online book launch via Sam Read Bookseller in Grasmere. With conversation, readings and song, it was the ideal introduction to the themes of this debut memoir by a poet. The book is composed of dozens of brief autobiographical, present-tense essays, each titled after a wildflower with traditional healing properties. The chapters are headed by a black-and-white woodcut of each plant (by Bennett’s husband, Adam Clarke) and a précis of its medicinal uses, as well as where it is found. Again and again, these descriptions site the flora on edgelands or “disturbed ground” – the perfect metaphorical tie-in to Bennett’s tumultuous life and the comfort that creating an apothecary garden brought.

Bennett is the youngest of six children. When she was expecting her son – much longed for after multiple pregnancy losses – news came that her eldest sister had died in a canoeing accident. At age two, her son was diagnosed with type 1 diabetes; managing his condition has imposed a heavy emotional burden. And years later, she was the primary caregiver for her elderly mother as she was dying of mesothelioma. The memoir’s format – which arose in part because it was written over the course of 10 years, during stolen moments – realistically presents bereavement and caring as ongoing, cyclical challenges rather than one-time events.

There are no simple solutions offered here, nothing so pat as that ‘gardening heals all hurts’, but Bennett writes into the broken places and finds joy in what comes to life spontaneously in nature or in her ramshackle yard on a social housing estate in Cumbria. She recalls a horse chestnut tree that looked over her outside the window of her childhood home; she and her son take impish delight in guerrilla gardening and sometimes disastrous cooking projects with foraged fruit. Some of my favourite individual vignettes were “Elder,” about the magic and medicine of making elderberry syrup from the few village trees that escape the chainsaw; “Dandelion,” about her trio of older sisters, who were Greenham Common protestors and always tried to protect her as well as nature; “Herb Robert,” about her sister-in-law’s funeral; and especially “Honeysuckle,” about a local agricultural show where the officious organizers make them feel like interlopers yet her son wins first place for their feral, fecund garden.

Many side topics twine into the narrative as well: a difficult relationship with a controlling mother; a family history that takes in boarding schools, cults, road trips, risk taking and mental health issues; the economic disparity that leads to one set of rules for the rich and another for those on benefits. But the core of the book is a tender mother–son relationship. “I can give him this: a seed, with all its defiant hope against the dark; and the memory that once, we grew a garden out of rock, and waste, and all things broken, and it thrived.” Sitting somewhere between creative nonfiction and nature essays, it’s a beautiful read for any fan of women’s life writing, especially if you share the interests in grief or gardening. I hope we’ll see it recognized on the Barbellion and Wainwright Prize shortlists alike.

Readalikes I have reviewed: A Still Life by Josie George, The Book of Difficult Fruit by Kate Lebo, The Cure for Sleep by Tanya Shadrick

With thanks to Victoria Bennett and Two Roads for the free copy for review.

 

I Have Some Questions for You by Rebecca Makkai

I’m a big fan of Makkai’s first two novels, The Borrower and The Hundred-Year House, and have her other two books lined up to read, so I was excited to hear about this new work and put it on my Most Anticipated list for the year. My interest was redoubled by Laura’s review, which likens it to a cross between Prep and My Dark Vanessa – irresistible.

Bodie Kane grew up in a deprived and dysfunctional family in Indiana, and has beneficent Mormon neighbours to thank for the tuition money that allowed her to attend Granby, an exclusive New Hampshire boarding school, in the early to mid-1990s. She was an angry and awkward high school student, yet her memories of Granby and the friendships she made there are still an emotional mainstay more than two decades later. In 2018, she is a successful film professor with a podcast about Hollywood starlets. Although she is separated from Jerome, her artist husband, he lives next door and they co-parent their two children.

After an invitation comes from Granby to teach a two-week course on podcasting, Bodie trades Los Angeles for a bitter New England winter. It’s the perfect excuse to indulge her obsession with the 1995 murder of her former Granby roommate, Thalia Keith, who was found dead in the swimming pool one March morning after a play performance. Bodie has never been comfortable with the flawed case against the Black athletics coach, Omar Evans, who has been imprisoned ever since. When one of her students chooses to make Thalia’s murder the subject of a podcast, it’s all the justification Bodie needs to dive deep into her pet hypothesis: Thalia was sleeping with the music director, Denny Bloch, and he was involved in her death in some way. Her blinkered view threatens to exclude a key explanation. Still, the informal sleuthing she and her students do is enough to warrant a follow-up hearing in 2022, but they – and Omar – are up against a broken system.

Makkai has taken her cues from the true crime genre and constructed a convincing mesh of evidence and theories. There’s a large cast of secondary characters, from Dorian, the bully who once humiliated Bodie with sexual slurs, to Fran, the faculty kid/gay best friend who now lives and works on campus herself and continues to be Bodie’s trusty backup. The combinations of background + teenage behaviour + 40-something lives all feel authentic in their randomness (when I saw that Makkai sourced 24 names from indie bookstore supporters, I realized afresh just how real, as opposed to ‘made-up’, these characters feel).

At times I wondered if there was too much detail on the case and the former classmates; I might even have streamlined the novel by doing away with the 2022 section altogether, though it ends up being crucial to the plot. But Makkai has so carefully crafted these pen portraits, and so intimately involved us in Bodie’s psyche, that it’s easy to become invested in the story. What’s more, the novel introduces a seam of rage about violence towards women – so predictably excused and allowed to recur by a justice system weighted against victims –

What’s as perfect as a girl stopped dead, midformation? Girl as blank slate. Girl as reflection of your desires, unmarred by her own. Girl as sacrifice to the idea of girl.

let’s say it was the one where the rugby team covered up the girl’s death and the school covered for the rugby team. Actually it was the one where the therapist spent years grooming her. It was the one where the senator, then a promising teenager, shoved his d*ck in the girl’s face. … It was the one where her body was never found. It was the one where her body was found in the snow. It was the one where he left her body for dead under the tarp.

– yet also finds nuance in the situation when Bodie’s ex-husband is subjected to exaggerated #MeToo accusations. It’s timely, daring, intelligent, enthralling storytelling. Susan (review here) and I are both hoping to see this make the Women’s Prize longlist next week.

Readalikes I have reviewed: Ghost Wall by Sarah Moss, My Dark Vanessa by Kate Elizabeth Russell, The Bass Rock by Evie Wyld

With thanks to Fleet for the proof copy for review.

 

What are the best 2023 books you’ve read so far?