Assisted Dying: Intervals by Marianne Brooker; Wendy Mitchell; and a Local Panel Discussion
Intervals by Marianne Brooker is on the longlist for the inaugural Women’s Prize for Non-Fiction, which my book club has applied to shadow. I’ve now read three of the nominees, the others being Matrescence and A Flat Place (review coming up tomorrow). Unsurprisingly, I’ve gravitated towards the ones based around a personal narrative – although all three are also political and incorporate research and cultural critique. Brooker’s is an extended essay about her mother’s protracted death with multiple sclerosis and the issues it brought up around disability, poverty, and inequality of access to medical care and services.
Specifically, Brooker decries the injustice of the wealthy having the option of travelling to Dignitas in Switzerland for an assisted death (current cost: £15,000), whereas her single mother, who lived in rented accommodation and had long been disabled and unable to work, apart from crafting and reading tarot, had so such relief in sight. Instead, she resorted to refusing life-sustaining nourishment. VSED, or voluntarily stopping eating and drinking, was a topic much on my mind anyway because of Wendy Mitchell’s death last month.
Mitchell was diagnosed with early-onset Alzheimer’s in her fifties and was an energetic campaigner for dementia education and research for the last decade of her life. With a co-author, she wrote three books that give a valuable insider’s view of life with dementia: Somebody I Used to Know, What I Wish People Knew About Dementia, and One Last Thing, in which she specifically discusses VSED. She was determined to live independently. For her, a dignified life was being able to meet her own daily physical needs. She did not want to be in a care home, or to exist past the point where she could no longer recognise her daughters. So when, in January, she fell and broke both wrists, giving her a taste of dependency and derailing her plans to travel to Dignitas, she knew that the time had come. VSED was her way out. You can read her farewell message here.
Is wilful starvation a good death? I don’t really know. It’s peaceful, at least; a person simply gets weaker and weaker, spending more and more time asleep until they fade out, at home. But it can take two weeks to die in this way. Should loved ones have to watch this process?
Denied a liveable life and a legal right to die, my mum made a choice within and between the lines of the law. A decade after her diagnosis, when she was forty-nine and I was twenty-six, she decided to stop eating and drinking to end her suffering and her life. Her MS symptoms were barely treatable and certainly incurable: severe pain, incontinence, fatigue, the gradual but intensifying loss of mobility, vision and speech. But these medical symptoms were compounded by social conditions: isolation, stress, debt and fear of a future in which she would not be able to live or die in her chosen home. We were caught in a perfect storm.
Brooker’s description of the vigil of these last days, like her account of her vivacious mother’s life, is both tender and unflinching. It’s almost like a counterpoint to Simone de Beauvoir’s A Very Easy Death, but with the same incisive attention and emotional transfer between mother and daughter. The book also incorporates political commentary and quotations from psychologists and cultural critics. This somewhat distances the reader; it feels less like a bereavement memoir and more like an impassioned, personally inspired treatise. But that’s not to say there isn’t some levity. She remembers good times from their earlier life together, and reckons with her new role as her mother’s memorial and archivist in a way that really rang true for me. I wish the title was more evocative so as to draw the right readers to this book. 
With thanks to Fitzcarraldo Editions for the free copy for review.
Also on this topic, I have read In Love by Amy Bloom, That One Patient by Ellen de Visser, The Inevitable by Katie Engelhart, Darke Matter by Rick Gekoski, and Wild and Precious Life by Deborah Ziegler.
Last night I attended a local panel discussion put on by the Campaign for Dignity in Dying. It wasn’t a debate in that 3.5 of the 4 members on the panel were pro-assisted dying, and I would guess more than four-fifths of the audience as well. In fact, the only anti- voice of the evening was from a young Catholic man during question time. I knew about the event because one panelist attends my church: George Carey, a former archbishop of Canterbury.
The Anglican Church’s line – the religious response in general – is to uphold the sanctity of life and thus to oppose assisted suicide, so for Lord Carey to do otherwise is noteworthy. He changed his mind in 2014, he explained, after the high-profile case of Tony Nicklinson, who was paralysed after a stroke and lost his appeal over the right to die. “There is no theological contradiction between valuing life and wanting a good death,” Carey insisted. Jesus showed mercy to the ill and dying, and so should we. (He also, more facetiously, described King Saul’s mercy killing by an enemy soldier in 2 Samuel as an assisted death.)
The other panelists were a lawyer, a retired doctor, and a Member of Parliament. Lawyer Graham Wood noted that the 1961 Suicide Act, under which anyone who assists a suicide can be prosecuted, would have to be abolished, and that there would also need to be a negotiation regarding Article 2 of the European Convention on Human Rights, which protects the “right to life.” He was the most wary of the speakers, warning of the danger of undue influence being exerted by relatives when money and assets are involved – he said he sees the worst of humanity in his line of work.
Dr Barry Newman pinned his support for assisted dying to compassion and autonomy, two overriding values of a liberal society. He acknowledged the current professional risk for doctors, and noted that the UK’s main medical bodies remain neutral. However, he brought up a loophole, “double effect,” administering a medication that might end life but whose intent is to alleviate suffering, e.g., a high dose of morphine to an end-stage cancer patient.
Kit Malthouse, Conservative MP for northwest Hampshire, co-chairs a group on end-of-life and has campaigned for assisted dying. (American readers may be surprised by a conservative politician having liberal views on an ethical matter. In the UK, morality is not in lockstep with religions and/or political parties as it is in the USA. This was something it took me a while to get used to: I have Christian friends who vote for four different political parties.) He was disappointed that a members’ bill on assisted dying failed in 2015, but has hope that multiple recent cases (e.g., Esther Rantzen) will put it back on the agenda and believes support in the Commons is sufficient to push legislation through in six months.
“It’s coming,” he assured, not least because many of the UK’s European neighbours and other allies have introduced assisted dying. The UK bill does not go as far as the Dutch legislation, about which all the panelists expressed doubt, and can be tailored to this country’s health system. The status quo, Malthouse cautioned, is people suffering. We know from Oregon that the current proposal will work well, he said; there is vanishingly little abuse of the system in any of the places that have instituted assisted dying legislation.
It was all preaching to the choir as far as I was concerned. Indeed, the spontaneous applause and affirming subvocalizations reminded me of a Pentecostal church service. Clearly, many from the audience had witnessed loved ones dying in horrible ways (a few of these stories came out during question time, such as a woman whose husband went to Dignitas and another who had to fight for her terminally ill sister’s wishes when she was mistakenly resuscitated by paramedics after a suicide attempt). Malthouse observed that supporters of assisted dying have often been through horrific experiences with relatives or spouses.
I was already firmly in support so last night didn’t sway me in any way, but I was encouraged that so many people are thinking and talking about these issues. Maybe by the time I face such a crisis myself, or on someone else’s behalf, a compassionate law will be in place.
Book Serendipity, June to July 2023
I call it “Book Serendipity” when two or more books that I read at the same time or in quick succession have something in common – the more bizarre, the better.
Are all of these pure coincidence? Or, as a character says in The Year of Pleasures by Elizabeth Berg, maybe it’s true that “Sometimes serendipity is just intention, unmasked.”
This is a regular feature of mine every couple of months. Because I usually have 20–30 books on the go at once, I suppose I’m more prone to such incidents. The following are in roughly chronological order.
- A deadbeat boyfriend named Andrew in Yellowface by Rebecca F. Kuang and The Legacy of Elizabeth Pringle by Kirsty Wark.
- A partner’s piano playing is by turns annoying (practice) and revelatory (performance) in The Happy Couple by Naoise Dolan and The Late Americans by Brandon Taylor.
- Frequent meals of potatoes due to poverty, and a character sneaking salt in, in Music in the Dark by Sally Magnusson and How Much of These Hills Is Gold by C Pam Zhang.
- Getting close to a seal even though the character knows it might bite in Salt & Skin by Eliza Henry-Jones and one story in High-Wire Act by JoeAnn Hart.
- Rev. Robert Kirk’s writings on fairies are mentioned in The Archaeology of Loss by Sarah Tarlow and The Legacy of Elizabeth Pringle by Kirsty Wark (and were also a major element in Sally Magnusson’s previous novel, The Ninth Child; I happened to be reading her most recent novel at the same time as the above two!).
- Menthols are smoked in Death of a Bookseller by Alice Slater and The Late Americans by Brandon Taylor.
- Joan Didion’s The Year of Magical Thinking is mentioned in Death of a Bookseller by Alice Slater and The Archaeology of Loss by Sarah Tarlow.
An ant farm as a metaphor in The Happy Couple by Naoise Dolan and The Wild Delight of Wild Things by Brian Turner.
- The main character, in buying a house, inherits the care of a large, elaborate garden from an older woman who kept it immaculate, in The Year of Pleasures by Elizabeth Berg and one story in High-Wire Act by JoeAnn Hart.
- A widow, despite her feminist ideals, wishes she had a man to take care of DIY and other house stuff for her in The Year of Pleasures by Elizabeth Berg and The Archaeology of Loss by Sarah Tarlow.
- A spouse’s death in 2016 and a description of cremation in The Archaeology of Loss by Sarah Tarlow and The Wild Delight of Wild Things by Brian Turner.
- A character deliberately burns a sexual partner’s cheek with a cigarette in Death of a Bookseller by Alice Slater and The Late Americans by Brandon Taylor.
- Counting down the days, then hours, until a wedding, in The Year of Pleasures by Elizabeth Berg, The Happy Couple by Naoise Dolan, and Crudo by Olivia Laing.
- Similar sentiments – about reading to find our own experiences expressed in a way we never would have thought to put them – in passages I encountered on the same day from A Life of One’s Own by Joanna Biggs (“I want to have that moment of recognition, finding something on the page I’ve felt but haven’t put into words”) and The Librarianist by Patrick deWitt (“the reader says to him or herself, Yes, that’s how it is, only I didn’t know it to describe it”).
- I encountered mentions of “Believe” by Cher in The Country of the Blind by Andrew Leland and House Gone Quiet by Kelsey Norris on the same evening.
- Calculating how old a newborn child will be on a certain date in the future – and fearing what the world will be like for them then – in Matrescence by Lucy Jones and Milk by Alice Kinsella.
- Moving with twin sons is a key part of the setup in Dirt by Bill Buford and Speak to Me by Paula Cocozza.
- I read scenes of a mother’s death from brain cancer in The Librarianist by Patrick deWitt and One Last Thing by Wendy Mitchell in the same evening.
- There’s a mint-green house, and a house with a rope banister (the same house in one case, but not in the other) in both Speak to Me by Paula Cocozza and The Librarianist by Patrick deWitt, two 6 July 2023 releases.
- Connective tissue in the body is compared to the threads of textiles in Cross-Stitch by Jazmina Barrera and Floppy by Alyssa Graybeal.
- The metaphorical framework of one day is used as the structure in One Midsummer’s Day by Mark Cocker and The Farmer’s Wife by Helen Rebanks.
- I’ve read two chef’s memoirs this summer with a scene of pig slaughter: A Cook’s Tour by Anthony Bourdain and Dirt by Bill Buford.
- A character who lost an arm in the First World War in The Librarianist by Patrick deWitt and Haweswater by Sarah Hall.
I read descriptions of fried egg residue on a plate, one right after the other in the same evening, in The Dead Are Gods by Eirinie Carson and The Wren The Wren by Anne Enright.
What’s the weirdest reading coincidence you’ve had lately?
Books of Summer, 6–8: Elizabeth Berg, Patricia Lockwood & Wendy Mitchell
Although I have foodie lit as a background theme for the summer’s reading, my main goal is simply to read books that I own, especially recent acquisitions and long-time shelf-sitters (whereas last year, in slavish conformity to a theme, I substituted in a bunch of library books, review books and e-books). My latest batch includes a slightly twee novel, an outlandish poetry collection, and an uneven nonfiction swan song.
The Year of Pleasures by Elizabeth Berg (2005)
From the cover, I was expecting this to be more foodie than it was. The protagonist does enjoy cooking for other people and reading cookbooks, though. Betta Nolan, 55 and recently widowed by cancer, drives from Boston to the Midwest and impulsively purchases a house in a Chicago suburb, something she and her late husband had fantasized about doing in retirement. It’s the kind of sweet little town where the only realtor is a one-woman operation and Betta as a newcomer automatically gets invited onto the local radio show. She also reconnects with her college roommates, tries dating, and mulls over her dream of opening a women’s boutique that sells silk scarves, handmade journals, essential oils and brownies.
While Berg is true to the shifting emotions that accompany grief, and gives Betta plenty of cute opportunities to make friends across the generations – with Lydia, the nonagenarian former owner of her house, now in a nursing home; Matthew, the fickle young man who does some odd jobs for her; and Benny, the next-door neighbor’s nine-year-old boy – I found the subplot about Matthew’s messy house and relationships silly, and Betta’s “What a Woman Wants” shop idea is so stereotyping I could feel myself rolling my eyes. Still, Berg’s novels, of which this was my fifth, are always reliably light and pleasant reads in an Anne Tyler vein. (Secondhand – 2nd & Charles) 
Motherland Fatherland Homelandsexuals by Patricia Lockwood (2014)
One of the more bizarre books I’ve ever read. I loved both Priestdaddy and No One Is Talking About This, but had no idea what to expect from Lockwood’s poems. They’re somewhere between absurdist monologues and thought experiments, often choosing an object or abstraction to animate (“A Recent Transformation Tries to Climb the Stairs”) and generally sexualized to the max (“Nessie Wants to Watch Herself Doing It”). Though they’re in stanzas, they aren’t heavy on poetic techniques. Some tangential topics are Bambi, Canada, basketball, waterfalls, King Kong adaptations, American poetry, Shirley Temple, and childhood hobbies like Animorphs, Egyptology and Magic Eye puzzles.
But really, her poetry is only “about” things in the loosest sense; the repetition, wordplay and snark are paramount. If you’ve heard of one, it’s likely to be the lengthy “Rape Joke,” which went as viral as it’s possible for a poem to and is, ironically, probably the sincerest entry here. Presumably based on her own bad experience with a teenage boyfriend, it is heartbreakingly banal: “The rape joke is that he was your father’s high school student … The rape joke is that come on, you should have seen it coming. … The rape joke is that you asked why he did it. The rape joke is he said he didn’t know, like what else would a rape joke say?”
A couple of my favourites were “List of Cross-Dressing Soldiers” and “He Marries the Stuffed-Owl Exhibit at the Indiana Welcome Center”; “The Father and Mother of American Tit-Pics,” in which a resurrected Emily Dickinson and Walt Whitman swap genders, had some of the more outrageous lines: “Walt Whitman is the Number Two Beach Body every year, because look at the way he snapped back into shape only months after giving birth to American Poetry.” Not really like any other poetry I’ve ever read. (New purchase with Christmas money) 
One Last Thing: Conversations on Life, Death and Assisted Dying by Wendy Mitchell with Anna Wharton (2023)
“We talk so often about prolonging life, but we are actually prolonging death by not discussing the suffering part of it.”
Wendy Mitchell’s first two books, Somebody I Used to Know and What I Wish People Knew About Dementia, are valuable peeks into daily life with young-onset Alzheimer’s. She has been a dedicated activist and educator in the nine years since her diagnosis, and I admire the work she’s done to get dementia services into the public eye.
The problem with her final book is that I’ve read so much about preparations for dying and the question of assisted suicide and she doesn’t bring much new to the discussion – apart from the specific viewpoint of someone deciding when and how to end their life when they don’t know what the future course of their illness looks like. Mitchell believes people should have this choice, but current UK law does not allow for assisted dying. A loophole is voluntarily stopping eating and drinking (VSED), which she deems her best option. She stopped attending assessments in 2017 and has filed forms with her GP refusing treatment – her nightmare situation is being reliant on care in hospital and she doesn’t want to become that future, dependent Wendy.
Like Henry Marsh’s farewell book, And Finally, this gives the impression of having been written in a hurry and rushed into print, and so could have been edited more. As it is, it’s fairly scattered, repetitive and unpolished. The interviews could all be streamlined and tidied up, and the one with Kathryn Mannix is split up in a confusing way.
For readers new to the topic, however, this could be a useful introduction to the issues. It’s up-to-date in that Mitchell attends a Death Café, meets an end-of-life doula, and talks through the different forms (power of attorney, advance directive and so on) with experts. I also thought the epilogue was a lovely touch: after going for a ‘wing walking’ airplane adventure, she imagines that, having taken a bus into York, she sees her pre-diagnosis self and tells her everything she would want her to know, good and bad, about the challenges to come. (Proof copy from Hungerford Bookshop Summer Reading Celebration) [Different subtitle on finished edition?] 
Book Serendipity, January to February 2022
This is a bimonthly feature of mine. I call it Book Serendipity when two or more books that I read at the same time or in quick succession have something in common – the more bizarre, the better. Because I usually 20–30 books on the go at once, I suppose I’m more prone to such incidents. (I’ve realized that, of course, synchronicity is really the more apt word, but this branding has stuck.) I always like hearing about your bookish coincidences, too!
The following are in roughly chronological order.
- The author takes Valium to cope with fear of flying in two memoirs I read at the same time, I Came All This Way to Meet You by Jami Attenberg and This Boy We Made by Taylor Harris.
- The fact that the Spanish brought wild horses to the USA is mentioned in the story “The Team” by Tommy Orange (in The Decameron Project) and the poetry collection Rise and Float by Brian Tierney – this also links back to a book I reread in late 2021, Misty of Chincoteague by Marguerite Henry.
- There are roaches in a New York City apartment in I Came All This Way to Meet You by Jami Attenberg and the story “Other People’s Lives” in Loss of Memory Is Only Temporary by Johanna Kaplan.
- The same Dostoevsky passage from The Brothers Karamazov, about loving everything (“Love all the earth, every ray of God’s light, every grain of sand or blade of grass, every living thing. If you love the earth enough, you will know the divine mystery” and so on), is quoted in Faith after Doubt by Brian McLaren and Reflections from the North Country by Sigurd Olson.
- A description of nicotine-stained yellow fingers in What I Wish People Knew About Dementia by Wendy Mitchell, The Cure for Sleep by Tanya Shadrick, and Free by Lea Ypi.
- Joni Mitchell’s music is mentioned in The Reactor by Nick Blackburn and The Cure for Sleep by Tanya Shadrick, two memoirs I was reading at the same time.
- From one summer camp story to another … I happened to follow up The Interestings by Meg Wolitzer with Honor Girl by Maggie Thrash.
- Audre Lorde’s definition of the erotic is quoted in Body Work by Melissa Febos and Heaven Is a Place on Earth by Adrian Shirk, both of which are March 15, 2022 nonfiction releases I’ve reviewed for Shelf Awareness.
- The 2017 white supremacist terrorist attack in Charlottesville, Virginia is mentioned in This Boy We Made by Taylor Harris (who lives there), Faith after Doubt by Brian McLaren (who was part of the clergy counterprotest group that day), and Heaven Is a Place on Earth by Adrian Shirk (she went there for a literary event a few months later).
- The Salvador Dalí painting The Persistence of Memory (that’s the one with the melting clock) is described in The Reactor by Nick Blackburn and This Boy We Made by Taylor Harris.
- On the same day, I came across the fact that Mary Shelley was pregnant while she wrote Frankenstein in two books: Linea Nigra by Jazmina Barrera and Smile by Sarah Ruhl.
- The fact that cysts in female organs can contain teeth comes up in Heaven Is a Place on Earth by Adrian Shirk and I Love You but I’ve Chosen Darkness by Claire Vaye Watkins.
- Reading two novels by Japanese-American authors who grew up in Hawaii at the same time: How High We Go in the Dark by Sequoia Nagamatsu and To Paradise by Hanya Yanagihara.
- Twins are everywhere! Including, just in a recent reading pile, in Hands by Lauren Brown (she’s a twin, so fair enough), Birth Notes by Jessica Cornwell, The Snow Collectors by Tina May Hall, Smile by Sarah Ruhl (this and the Cornwell are memoirs about birthing twins, so also fair enough), Ordinary Love by Jane Smiley, and The Priory by Dorothy Whipple. For as uncommon as they are in real life, they turn up way too often in fiction.
- Bell’s palsy AND giving birth to twins are elements in Birth Notes by Jessica Cornwell and Smile by Sarah Ruhl.
- There’s a no-nonsense maternity nurse in Birth Notes by Jessica Cornwell and The Priory by Dorothy Whipple.
- U.S. West Coast wolves (a particular one in each case, known by a tracking number) are the subject of a poem in Postcolonial Love Poem by Natalie Diaz and The Necessity of Wildfire by Caitlin Scarano.
- Herons appear and/or have metaphorical/symbolic meaning in Thorpeness by Alison Brackenbury, What Willow Says by Lynn Buckle, Maggie Blue and the Dark World by Anna Goodall, and The Priory by Dorothy Whipple.
- There’s a character named Edwin in Booth by Karen Joy Fowler and Sea of Tranquility by Emily St. John Mandel.
- The use of “hoard” where it should be “horde” in Maggie Blue and the Dark World by Anna Goodall and Acts of Desperation by Megan Nolan – both errors were encountered in the same evening.
- I read about Lindisfarne in Jini Reddy’s essay in Women on Nature (ed. Katharine Norbury) and The Interior Silence by Sarah Sands in the same evening.
- “Flitting” as a synonym for moving house in Thorpeness by Alison Brackenbury and Nature Cure by Richard Mabey.
- A brother named Paul in Tides by Sara Freeman and Sea of Tranquility by Emily St. John Mandel.
- A woman knows her lover is on the phone with his ex by his tone of voice in Tides by Sara Freeman and Acts of Desperation by Megan Nolan.
- In two novels I’ve read so far this year – but I won’t say which ones as it’s a spoiler – the big reveal, towards the very end, is that a woman was caught breastfeeding someone who was not her baby and it caused a relationship-destroying rupture.
- Reading a second memoir this year where the chapters are titled after pop songs: Dear Queer Self by Jonathan Alexander (for a Foreword review) and now This Will Only Hurt a Little by Busy Philipps.
- A second short novel entitled The Swimmers this year: the first was Julie Otsuka’s, recently reviewed for Shiny New Books; a proof copy is on the way to me of Chloe Lane’s, coming out from Gallic Books in May.
- Reading a second memoir this year whose author grew up in the Chicago suburbs of Illinois (Arlington Heights/Buffalo Grove vs. Oak Park): I Came All This Way to Meet You by Jami Attenberg and This Will Only Hurt a Little by Busy Philipps.
- The linea nigra (a stripe of dark hair down a pregnant woman’s belly) provides the title for Linea Nigra by Jazmina Barrera and is also mentioned in Birth Notes by Jessica Cornwell.
The famous feminist text Our Bodies, Ourselves is mentioned in Birth Notes by Jessica Cornwell and I Love You but I’ve Chosen Darkness by Claire Vaye Watkins.
- Childbirth brings back traumatic memories of rape in Birth Notes by Jessica Cornwell and This Will Only Hurt a Little by Busy Philipps.
What’s the weirdest reading coincidence you’ve had lately?
January Releases II: Nick Blackburn, Wendy Mitchell & Padraig Regan
The January new releases continue! I’ll have a final batch of three tomorrow. For today, I have an all-over-the-place meditation masquerading as a bereavement memoir, an insider’s look at what daily life with dementia is like, and a nonbinary poet’s debut.
The Reactor: A Book about Grief and Repair by Nick Blackburn
I’ll read any bereavement memoir going, and the cover commendations from Olivia Laing and Helen Macdonald made this seem like a sure bet. Unfortunately, this is not a bereavement memoir but an exercise in self-pity and free association. The book opens two weeks after Blackburn’s father’s death – “You have died but it’s fine, Dad.” – and proceeds in titled fragments of one line to a few paragraphs. Blackburn sometimes addresses his late father directly, but more often the “you” is himself. He becomes obsessed with the Chernobyl disaster (even travelling to Belarus), which provides the overriding, and overstretched, title metaphor – “the workings of grief are unconscious, invisible. Like radiation.”
From here the author indulges in pop culture references and word association: Alexander McQueen’s fashion shows, Joni Mitchell’s music, Ingmar Bergman’s films, Salvador Dalí’s paintings and so on. These I at least recognized; there were plenty of other random allusions that meant nothing to me. All of this feels obfuscating, as if Blackburn is just keeping busy: moving physically and mentally to distract from his own feelings. A therapist focusing on LGBT issues, he surely recognizes his own strategy here. This seems like a diary you’d keep in a bedside drawer (there’s also the annoyance of no proper italicization or quotation marks for works of art), not something you’d try to get published as a bereavement memoir.
The bigger problem is there is no real attempt to convey a sense of his father. It would be instructive to go back and count how many pages actually mention his father. One page on his death; a couple fleeting mentions of his mental illness being treated with ECT and lithium. Most revealing of all, ironically, is the text of a postcard he wrote to his mother on a 1963 school trip to Austria. “I want to tell you more about my father, but honestly I feel like I hardly knew him. There was always his body and that was enough,” Blackburn writes. Weaselling out of his one task – to recreate his father for readers – made this an affected dud.
With thanks to Faber for the free copy for review.
What I Wish People Knew About Dementia: From Someone Who Knows by Wendy Mitchell
I loved Mitchell’s first book, Somebody I Used to Know. She was diagnosed with early-onset Alzheimer’s at age 58 in 2014. This follow-up, too, was co-written with Anna Wharton (they have each written interesting articles on their collaboration process, here and here). Whereas her previous work was a straightforward memoir, this has more of a teaching focus, going point by point through the major changes dementia causes to the senses, relationships, communication, one’s reaction to one’s environment, emotions, and attitudes.
I kept shaking my head at all these effects that would never have occurred to me. You tend not to think beyond memory. Food is a major issue for Mitchell: she has to set iPad reminders to eat, and chooses the same simple meals every time. Pasta bowls work best for people with dementia as they can get confused trying to push food around a plate. She is extra sensitive to noises and may have visual and olfactory hallucinations. Sometimes she is asked to comment on dementia-friendly building design. For instance, a marble floor in a lobby looks like water and scares her, whereas clear signage and bright colours cheer up a hospital trip.
The text also includes anonymous input from her friends with dementia, and excerpts from recent academic research on what can help. Mitchell and others with Alzheimer’s often feel written off by their doctors – her diagnosis appointment was especially pessimistic – but her position is that the focus should be on what people can still do and adaptations that will improve their everyday lives. Mitchell lives alone in a small Yorkshire village and loves documenting the turning of the seasons through photographs she shares on social media. She notes that it’s important for people to live in the moment and continue finding activities that promote a flow state, a contrast to some days that pass in a brain haze.
This achieves just what it sets out to: give a picture of dementia from the inside. As it’s not a narrative, it’s probably best read in small doses, but there are some great stories along the way, like the epilogue’s account of her skydive to raise money for Young Dementia UK.
With thanks to Bloomsbury for the proof copy for review.
Some Integrity by Padraig Regan
The sensual poems in this debut collection are driven by curiosity, hunger and queer desire. Flora and foods are described as teasing mystery, with cheeky detail:
I’m thinking of how mushrooms will haunt a wet log like bulbous ghosts
The chicken is spatchcocked & nothing
like a book, but it lies open & creases
where its spine once was.
For as long as it take a single drop of condensation to roll its path
down the curve of a mojito glass before it’s lost in the bare wood of the table,
everything is held // in its hall of mirrors
An unusual devotion to ampersands; an erotic response to statuary, reminiscent of Richard Scott; alternating between bold sexuality and masochism to the point of not even wanting to exist; a central essay on the Orlando nightclub shooting and videogames – the book kept surprising me. I loved the fertile imagery, and appreciated Regan’s exploration of a nonbinary identity:
Often I envy the Scandinavians for their months of sun,
unpunctuated. I think I want some kind of salad. I want to feel like a real boy, sometimes.
Thank you
for this chain of daisies to wear around my neck — it makes me look so pretty.
Highly recommended, especially to readers of Séan Hewitt and Stephen Sexton.
With thanks to Carcanet Press for the free copy for review.
Does one of these books appeal to you?
2022 Proof Copies & Early Recommendations (Julia Armfield’s Debut Novel, Lily King’s Short Stories)
I didn’t feel like I’d done a lot of pre-release reading yet, but put it all together and somehow it looks like a lot…
My top recommendations for 2022 (so far):
Our Wives Under the Sea by Julia Armfield
Coming on March 3rd from Picador (UK) and on July 12th from Flatiron Books (USA)
I loved Armfield’s 2019 short story collection Salt Slow, which I reviewed when it was shortlisted for the Sunday Times Young Writer of the Year Award. Her strategy in her debut novel is similar: letting the magical elements seep in gradually so that, lulled into a false sense of familiarity, you find the creepy stuff all the more unsettling.
Miri is relieved to have her wife back when Leah returns from an extended Centre for Marine Inquiry expedition. But something went wrong with the craft while in the ocean depths and it was too late to evacuate. What happened to Leah and the rest of the small crew? Miri starts to worry that Leah – who now spends 70% of her time in the bathtub – will never truly recover. Chapters alternate between Miri describing their new abnormal and Leah recalling the voyage. As Miri tries to tackle life admin for both of them, she feels increasingly alone and doesn’t know how to deal with persistent calls from the sister of one of the crew members.
This is a really sensitive consideration of dependency and grief – Miri recently lost her mother and Leah’s father also died. I especially liked the passages about Miri’s prickly mother: it was impossible not to offend her, and she truly believed that if she resisted ageing she might never die. Leah seems shell-shocked; her matter-of-fact narration is a contrast to Miri’s snark. Armfield gives an increasingly eerie story line a solid emotional foundation, and her words about family and romantic relationships ring true. I read this in about 24 hours in early December, on my way back from a rare trip into London; it got the 2022 releases off to a fab start to me. Plus, the title and cover combo is killer. I’d especially recommend this to readers of Carmen Maria Machado and Banana Yoshimoto. (Read via NetGalley) 
Five Tuesdays in Winter by Lily King
Coming on January 20th from Picador (UK); released in the USA in November 2021
The same intimate understanding of emotions and interactions found in Euphoria and Writers & Lovers underlies King’s first short story collection. Some stories are romantic; others are retrospective coming-of-age narratives. Most are set in New England, but the time and place varies from the 1960s to the present day and from Maine to northern Europe. Several stories look back to a 1980s adolescence. “South” and “The Man at the Door” are refreshingly different, incorporating touches of magic and suspense. However, there are also a few less engaging stories, and there aren’t particularly strong linking themes. Still, the questions of love’s transience and whether any relationship can ever match up to expectations linger. I’d certainly recommend this to fans of King’s novels. (See my full review at BookBrowse. See also my related article on contemporary New England fiction.)
With thanks to Picador for the proof copy for review.
Other 2022 releases I’ve read:
(In publication date order)
Write It All Down: How to put your life on the page by Cathy Rentzenbrink [Jan. 6, Bluebird] I’ve read all of Rentzenbrink’s books, but the last few have been disappointing. Alas, this is more of a therapy session than a practical memoir-writing guide. (Full review coming later this month.)
Recovery: The Lost Art of Convalescence by Gavin Francis [Jan. 13, Wellcome Collection]: A short, timely book about the history and subjectivity of recovering from illness. (Full review and giveaway coming next week.) 
The Store-House of Wonder and Astonishment by Sherry Rind [Jan. 15, Pleasure Boat Studio]: In her learned and mischievous fourth collection, the Seattle poet ponders Classical and medieval attitudes towards animals. (Full review coming to Shelf Awareness soon.)
Stepmotherland by Darrel Alejandro Holnes [Feb. 1, University of Notre Dame Press]: Holnes’s debut collection, winner of the Andrés Montoya Poetry Prize, ponders a mixed-race background and queerness through art, current events and religion. Poems take a multitude of forms; the erotic and devotional mix in provocative ways. (See my full review at Foreword.)
Rise and Float: Poems by Brian Tierney [Feb. 8, Milkweed Editions]: A hard-hitting debut collection with themes of bereavement and mental illness – but the gorgeous imagery lifts it above pure melancholy. (Full review coming to Shelf Awareness soon.)
Cost of Living: Essays by Emily Maloney [Feb. 8, Henry Holt]: Probing mental illness and pain from the medical professional’s perspective as well as the patient’s, 16 autobiographical essays ponder the value of life. (Full review coming to Shelf Awareness soon.)
Circle Way: A Daughter’s Memoir, a Writer’s Journey Home by Mary Ann Hogan [Feb. 15, Wonderwell]: A posthumous memoir of family and fate that focuses on a father-daughter pair of writers. A fourth-generation Californian, Hogan followed in her father Bill’s footsteps as a local journalist. Collage-like, the book features song lyrics and wordplay as well as family anecdotes. (See my full review at Foreword.)
Cold Enough for Snow by Jessica Au [Feb. 23, Fitzcarraldo Editions]: A delicate work of autofiction – it reads like a Chloe Aridjis or Rachel Cusk novel – about a woman and her Hong Kong-raised mother on a trip to Tokyo. (Full review coming up in a seasonal post.)
The Carriers: What the Fragile X Gene Reveals about Family, Heredity, and Scientific Discovery by Anne Skomorowsky [May 3, Columbia UP]: Blending stories and interviews with science and statistics, this balances the worldwide scope of a disease with its intimate details. (Full review coming to Foreword soon.)
Currently reading:
(In release date order)
This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown by Taylor Harris [Jan. 11, Catapult] (Reading via Edelweiss; to review for BookBrowse)
To Paradise by Hanya Yanagihara [Jan. 11, Picador] (Blog review coming … eventually)
I Came All This Way to Meet You: Writing Myself Home by Jami Attenberg [Jan. 13, Serpent’s Tail] (Blog review coming later this month)
Everything Is True: A Junior Doctor’s Story of Life, Death and Grief in a Time of Pandemic by Roopa Farooki [Jan. 20, Bloomsbury] (To review for Shiny New Books)
Some Integrity by Padraig Regan [Jan. 27, Carcanet] (Blog review coming later this month)
Additional proof copies on my shelf:
(In release date order; publisher blurbs from Goodreads/Amazon)
What I Wish People Knew About Dementia by Wendy Mitchell [Jan. 20, Bloomsbury]: “When Mitchell was diagnosed with young-onset dementia at the age of fifty-eight, her brain was overwhelmed with images of the last stages of the disease – those familiar tropes, shortcuts and clichés that we are fed by the media, or even our own health professionals. … Wise, practical and life affirming, [this] combines anecdotes, research and Mitchell’s own brilliant wit and wisdom to tell readers exactly what she wishes they knew about dementia.”
I Love You But I’ve Chosen Darkness by Claire Vaye Watkins [Came out in USA last year; UK release = Jan. 20, Quercus]: “Leaving behind her husband and their baby daughter, a writer gets on a flight for a speaking engagement in Reno, not carrying much besides a breast pump and a spiraling case of postpartum depression. … Deep in the Mojave Desert where she grew up, she meets her ghosts at every turn: the first love whose self-destruction still haunts her; her father, a member of the most famous cult in American history.”
Beasts of a Little Land by Juhea Kim [Feb. 3, Oneworld]: “From the perfumed chambers of a courtesan school in Pyongyang to the chic cafes of a modernising Seoul and the thick forests of Manchuria, Juhea Kim’s unforgettable characters forge their own destinies as they shape the future of their nation. Immersive and elegant, firmly rooted in Korean folklore and legend, [this] unveils a world where friends become enemies, enemies become saviours, and beasts take many shapes.”
Theatre of Marvels by Lianne Dillsworth [April 28, Hutchinson Heinemann]: “Unruly crowds descend on Crillick’s Variety Theatre. Young actress Zillah [a mixed-race orphan] is headlining tonight. … Rising up the echelons of society is everything Zillah has ever dreamed of. But when a new stage act disappears, Zillah is haunted by a feeling that something is amiss. Is the woman in danger? Her pursuit of the truth takes her into the underbelly of the city.” (Unsolicited) [Dillsworth is Black British.]
The Secret Lives of Church Ladies by Deesha Philyaw [Came out in USA in 2020; UK release = May 5, Pushkin]: “explores the raw and tender places where Black women and girls dare to follow their desires and pursue a momentary reprieve from being good. … With their secret longings, new love, and forbidden affairs, these church ladies are as seductive as they want to be, as vulnerable as they need to be, as unfaithful and unrepentant as they care to be, and as free as they deserve to be.”
And on my NetGalley shelf:
Will you look out for one or more of these titles?
Any other 2022 reads you can recommend?
The 2019 Wellcome Book Prize: Shadow Panel and Wish List
On Tuesday the longlist for the 2019 Wellcome Book Prize will be announced. For the third year in a row I’m running a shadow panel, and it’s composed of the same four wonderful book bloggers who joined me last year: Paul Cheney of Halfman, Halfbook, Annabel Gaskell of Annabookbel, Clare Rowland of A Little Blog of Books, and Dr. Laura Tisdall.
This year we’re going to do things slightly differently: we plan to split up the longlist, taking two to three titles each, so that between us we will have read them all and can announce our own preferred shortlist before the official shortlist is announced in March. At that point we’ll catch up by (re)reading the six shortlisted books, each reviewing the ones we haven’t already. Essentially, I’m adding an extra stage of shadow panel judging, simply because I can. I hope it will be fun – and also less onerous, in that we should get a leg-up on the shortlist and not have to read all six books in March‒April, which has proved to be a challenge in the past.
My Wellcome Prize hopefuls are all the fiction or nonfiction titles I’ve read on a medical theme that were published in the UK in calendar year 2018. I have put asterisks beside the 12 books in this post that I predict for the longlist. (The combination of wishful thinking and likelihood means that these are not exclusively my personal favorites.)
Below is a list of the books I’ve already featured on the blog in some way, with links to my coverage and a few-word summary of their relevance.
Nonfiction
Gross Anatomy by Mara Altman: Female body woes
*Beneath the Skin: Great Writers on the Body: Essays on organs
*All that Remains by Sue Black: Forensic anthropology
Everything Happens for a Reason by Kate Bowler: Living with advanced cancer
Heal Me by Julia Buckley: Tackling chronic pain
*The Unmapped Mind by Christian Donlan: Adjusting to life with MS
From Here to Eternity by Caitlin Doughty: Funerary rites around the world
This Really Isn’t About You by Jean Hannah Edelstein: A genetic disease in the family
Natural Causes by Barbara Ehrenreich: Questioning the wellness culture
On Smaller Dogs and Larger Life Questions by Kate Figes: Pondering breast cancer
Shapeshifters by Gavin Francis: Instances of bodily change
The Reading Cure by Laura Freeman: Healing from an eating disorder
Nine Pints by Rose George: The story of blood
Waiting for the Last Bus by Richard Holloway: Ageing and death
*Heart: A History by Sandeep Jauhar: Heart disease and treatments
Sick by Porochista Khakpour: Chronic Lyme disease
Human Errors by Nathan Lents: Flawed bodies; evolutionary adaptations
Skybound by Rebecca Loncraine: Breast cancer; flying lessons
Amateur by Thomas Page McBee: Memoir of F2M transformation
*Face to Face by Jim McCaul: Tales of facial surgery
*Somebody I Used to Know by Wendy Mitchell: A firsthand account of early Alzheimer’s
*That Was When People Started to Worry by Nancy Tucker: Mental illness from the inside
*The Language of Kindness by Christie Watson: Nursing as a vocation
Fiction
Little by Edward Carey: Anatomical models in wax (thanks to Clare for the reminder!)
Orchid & the Wasp by Caoilinn Hughes: Non-epileptic seizures
*The Winter Soldier by Daniel Mason: Neurology, surgery during WWI
The Way of All Flesh by Ambrose Parry: Medicine in 1840s Edinburgh
Other eligible books that I have read but not happened to mention on the blog:
In Shock by Rana Awdish: The doctor became the patient when Awdish, seven months pregnant, was rushed into emergency surgery with excruciating pain due to severe hemorrhaging into the space around her liver, later explained by a ruptured tumor. Having experienced brusque, cursory treatment, even from colleagues at her Detroit-area hospital, she was convinced that doctors needed to do better. This memoir is a gripping story of her own medical journey and a fervent plea for compassion from medical professionals.
Doctor by Andrew Bomback: Part of the Bloomsbury Object Lessons series, this is a wide-ranging look at what it’s like to be a doctor. Bomback is a kidney specialist; his wife is also a doctor, and his father, fast approaching retirement, is the kind of old-fashioned, reassuring pediatrician who knows everything. Even the author’s young daughter likes playing with a stethoscope and deciding what’s wrong with her dolls. In a sense, then, Bomback uses fragments of family memoir to compare the past, present and likely future of medicine. 
A Moment of Grace by Patrick Dillon [skimmed]: A touching short memoir of the last year of his wife Nicola Thorold’s life, in which she battled acute myeloid leukemia. Dillon doesn’t shy away from the pain and difficulties, but is also able to summon up some gratitude.
Get Well Soon: Adventures in Alternative Healthcare by Nick Duerden: British journalist Nick Duerden had severe post-viral fatigue after a run-in with possible avian flu in 2009 and was falsely diagnosed with ME / CFS. He spent a year wholeheartedly investigating alternative therapies, including yoga, massage, mindfulness and meditation, visualization, talk therapy and more. He never comes across as bitter or sorry for himself. Instead, he considered fatigue a fact of his new life and asked what he could do about it. So this ends up being quite a pleasant amble through the options, some of them more bizarre than others.
*Sight by Jessie Greengrass [skimmed]: I wanted to enjoy this, but ended up frustrated. As a set of themes (losing a parent, choosing motherhood, the ways in which medical science has learned to look into human bodies and minds), it’s appealing; as a novel, it’s off-putting. Had this been presented as a set of autobiographical essays, perhaps I would have loved it. But instead it’s in the coy autofiction mold where you know the author has pulled some observations straight from life, gussied up others, and then, in this case, thrown in a bunch of irrelevant medical material dredged up during research at the Wellcome Library. 
*Brainstorm: Detective Stories From the World of Neurology by Suzanne O’Sullivan: Epilepsy affects 600,000 people in the UK and 50 million worldwide, so it’s an important condition to know about. It is fascinating to see the range of behaviors seizures can be associated with. The guesswork is in determining precisely what is going wrong in the brain, and where, as well as how medicines or surgery could address the fault. “There are still far more unknowns than knowns where the brain is concerned,” O’Sullivan writes; “The brain has a mind of its own,” she wryly adds later on. (O’Sullivan won the Prize in 2016 for It’s All in Your Head.)
I’m also currently reading and enjoying two witty medical books, The Mystery of the Exploding Teeth and Other Curiosities from the History of Medicine by Thomas Morris, and Chicken Unga Fever by Phil Whitaker, his collected New Statesman columns on being a GP.
Four additional books I have not read but think might have a chance of making the longlist:
Primate Change: How the World We Made Is Remaking Us by Vybarr Cregan-Reid
The Beautiful Cure: Harnessing Your Body’s Natural Defences by Daniel M. Davis
Because I Come from a Crazy Family: The Making of a Psychiatrist by Edward M. Hallowell
*She Has Her Mother’s Laugh: The Powers, Perversions, and Potential of Heredity by Carl Zimmer
Look out for the announcement of the longlist on Tuesday afternoon! I’ll report back, perhaps on Wednesday, with some reactions and the shadow panel’s reviewing strategy.
Have you read, or are you interested in, any of these books?
Can you think of other 2018 releases that might be eligible for the Wellcome Book Prize?
Nonfiction November: Fiction/Nonfiction Pairings
I’d never participated in Nonfiction November before because I tend to read at least 40% nonfiction anyway, but I couldn’t resist the temptation to put together some fiction and nonfiction pairings based on books I’ve read this year and last. (This week of the month-long challenge is posted by Sarah’s Book Shelves, a blog I love for its no-nonsense recommendations of what to read – and what not to read – from the recent U.S. releases.)
My primary example is two books that reveal what it’s really like to have Alzheimer’s disease. Mitchell’s, in particular, is a book that deserves more attention. When it came out earlier this year, it was billed as the first-ever “dementia memoir” (is that an oxymoron?) – except, actually, there had been one the previous year (whoops!): Memory’s Last Breath by Gerda Saunders, which I have on my Kindle and still intend to read. [See also Kate W.’s picks, which include a pair of books with a dementia theme.]
Still Alice by Lisa Genova (2007)
Genova’s writing, Jodi Picoult-like, keeps you turning the pages; I read 225+ pages in an afternoon. There’s true plotting skill to how Genova uses a close third-person perspective to track the mental decline of Harvard psychology professor Alice Howland, who has early-onset Alzheimer’s disease. “Everything she did and loved, everything she was, required language,” yet her grasp of language becomes ever more slippery even as her thought life remains largely intact. I also particularly enjoyed the descriptions of Cambridge and its weather, and family meals and rituals. There’s a certain amount of suspension of disbelief required – Would the disease really progress this quickly? Would Alice really be able to miss certain abilities and experiences once they were gone? – and ultimately I preferred the 2014 movie version, but this would be a great book to thrust at any caregiver or family member who’s had to cope with dementia in someone close to them.
My rating: 
Other fictional takes on dementia that I can recommend: Unforgettable: Short Stories by Paulette Bates Alden, The Only Story by Julian Barnes, Everything Under by Daisy Johnson and Turn of Mind by Alice LaPlante.
&
Somebody I Used to Know by Wendy Mitchell with Anna Wharton (2018)
A remarkable insider’s look at the early stages of Alzheimer’s. Mitchell took several falls while running near her Yorkshire home, but it wasn’t until she had a minor stroke in 2012 that she and her doctors started taking her health problems seriously. In July 2014 she got the dementia diagnosis that finally explained her recurring brain fog. She was 58 years old, a single mother with two grown daughters and a 20-year career in NHS administration. Having prided herself on her good memory and her efficiency at everything from work scheduling to DIY, she was distressed that she couldn’t cope with a new computer system and was unlikely to recognize the faces or voices of colleagues she’d worked with for years. Less than a year after her diagnosis, she took early retirement – a decision that she feels was forced on her by a system that wasn’t willing to make accommodations for her.
The book, put together with the help of ghostwriter Anna Wharton, gives a clear sense of progression, of past versus present, and of the workarounds Mitchell uses to outwit her disease. The details and incidents are well chosen to present the everyday challenges of dementia. For instance, baking used to be one of Mitchell’s favorite hobbies, but in an early scene she’s making a cake for a homeless shelter and forgets she’s already added sugar; she weighs in the sugar twice, and the result is inedible. By the time the book ends, not only can she not prepare herself a meal; she can’t remember to eat unless she sets an alarm and barricades herself into the room so she won’t wander off partway through.
In occasional italicized passages Mitchell addresses her past self, running through bittersweet memories of all that she used to be able to do: “It amazes me now how you did it, because you didn’t have anyone to help you. You were Mum, Dad, taxi, chef, counsellor, gardener and housekeeper, all rolled into one.” Yet it’s also amazing how much she still manages to do as an ambassador for the Alzheimer’s Society and Dementia Friends. She crisscrosses the country to give speeches, attend conferences, and advise universities; she writes a blog and has appeared on radio to promote this book. Like many retired people, she’s found she’s busier than ever, and her engagements help her to feel purposeful and like she’s giving a positive impression of early-stage dementia. No matter that she has to rely on dozens of reminders to self in the form of Post-It notes, iPad alarms and a wall of photographs.
The story lines of this and Still Alice are very similar in places – the incidents while running, the inability to keep baking, and so on. And in fact, Mitchell reviewed the film and attended its London premiere, where she met Julianne Moore. Her book is a quick and enjoyable read, and will be so valuable to people looking to understand the experience of dementia. She is such an inspiring woman. I thank her for her efforts, and wish her well. This is one of my personal favorites for the shortlist of next year’s Wellcome Book Prize for medical reads.
My rating:
Other nonfiction takes on dementia that I can recommend: In Pursuit of Memory by Joseph Jebelli and The Summer of the Great-Grandmother by Madeleine L’Engle.
Additional pairings I would commend to you (all are books I have read and rated or above):
Talk before Sleep by Elizabeth Berg
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Let’s Take the Long Way Home by Gail Caldwell and Truth and Beauty by Ann Patchett
- Celebrating the strength of female friendship, even in the face of life-threatening illness.
Bad News by Edward St. Aubyn
&
Portrait of an Addict as a Young Man by Bill Clegg
- Vivid portrayals of drug addiction.
Miss Smilla’s Feeling for Snow by Peter Høeg
&
This Cold Heaven by Gretel Ehrlich
- Armchair traveling in Greenland.
Sweetbitter by Stephanie Danler
&
Cork Dork by Bianca Bosker
- Glimpses into the high-class world of fine dining – and fine wine.
Dear Fahrenheit 451: Love and Heartbreak in the Stacks by Annie Spence is chock-full of recommendations and reading pairs. The Novel Cure is also good for this sort of thing, though it is (no surprise) overwhelmingly composed of fiction suggestions.
Bookish Beck = Rebecca Foster. American transplant to England. Freelance proofreader and book reviewer.
Bookish Beck 