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:
- Labours of Love: The Crisis of Care by Madeleine Bunting
- All the Lives We Ever Lived: Seeking Solace in Virginia Woolf by Katharine Smyth
“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.
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?
I’m really not a Valentine’s Day person, yet this is the fifth year in a row that I’ve put together a themed post featuring books that have “Love” or a similar word in the title in the run-up to mid-February. (Here are the 2017, 2018, 2019 and 2020 posts. I’m also at work on a set of three “Heart” titles to post about on the 14th.) All three of the below books reflect, in their own ways, on how love perplexes and sustains us at different points in our lives.
The Emma Press Anthology of Love, ed. Rachel Piercey and Emma Wright (2018)
I read my first book from the publisher (Tiny Moons by Nina Mingya Powles) last summer and loved it, so when this one popped up in the Waterstones sale in January I snapped it up. Your average love poetry volume would trot out all the standards from Shakespeare’s sonnets to Carol Ann Duffy, whereas this features recent work from lesser-known contemporary poets. Of the 56 poets, I’d heard of just two before: Stephen Sexton, because I reviewed his collection, If All the World and Love Were Young, last year; and Rachel Long, because I was simultaneously reading her Costa Award-shortlisted debut, My Darling from the Lions.
What I most appreciated about the book is that it’s free of cliché. You can be assured there will be no ‘Roses are red, violets are blue’ simplicity of theme or style. It must be nigh on impossible to write about romantic and erotic love without resorting to the same old symbols, but here there is a fresh, head-turning metaphor every few pages. Rachel Plummer describes her first crush, on a video game character, in “Luigi.” Love is conveyed through endless cups of tea or practical skills that favor postapocalyptic survival; desire is sparked by the downy hair on a woman’s back or the deliberate way a lover pulls on a pair of tights. Anything might be a prelude to seduction: baking, preparing lab specimens, or taking a taster at the off-license.
There are no real duds here, but a couple of my overall favorites were “Note from Edinburgh” by Stav Poleg and “Not the Wallpaper Game” by Jody Porter (“her throat was a landmine grown over with roses / and her arms were the antidote to the sufferings of war”). I’m running low on poetry, so I’ve gone ahead and ordered three more original anthologies direct from The Emma Press (poems on the sea, illness, and aunts!). After all, it’s #ReadIndies month and I’m delighted to support this small publisher based in Birmingham.
I have a friend who always believed
love was like being touched
by a livewire or swimming
on her back in a lightning storm.
I want to tell her it’s homesickness,
how longing pulls us in funny ways.
(from “Falooda” by Cynthia Miller)
It’s today already
and we have only the rest of our lives.
Long may we dabble our feet in the clear Italian lakes.
Long may we mosey through the graveyards of the world.
(from “Romantic” by Stephen Sexton)
Love After Love by Ingrid Persaud (2020)
I saw the author read from this in November as part of a virtual Faber Live Fiction Showcase. My interest was then redoubled by the book winning the Costa First Novel Award. All three narrators – Betty, her son Solo, and their lodger Mr Chetan – are absolutely delightful, and I loved the Trini slang and the mix of cultures (for example, there is a Hindu temple where locals of Indian extraction go to practice devotion to the Goddess). Early on, I was reminded most, in voice and content, of Mr Loverman by Bernardine Evaristo.
But the lightness of Part One, which ends with a comically ill-fated tryst, soon fades. When Solo moves to New York City to make his own way in the world, he discovers that life is cruel and not everyone is good at heart. Indeed, my only hesitation in recommending this book is that it gets so very, very dark; the blurb and everything I had heard did not prepare me. If easily triggered, you need to know that there are many upsetting elements here, including alcoholism, domestic violence, self-harm, attempted suicide, sadomasochism, and gruesome murder. Usually, I would not list such plot elements for fear of spoilers, but it seems important to note that what seems for its first 100 pages to be such a fun, rollicking story becomes more of a somber commentary on injustices experienced by both those who leave Trinidad and those who stay behind.
A beautiful moment of reconciliation closes the story, but man, getting to that point is tough. The title speaks of love, yet this novel is a real heartbreaker. What that means, though, is that it makes you feel something. Not every author can manage that. So Persaud is a powerful talent and I would certainly recommend her debut, just with the above caveats.
Love’s Work: A Reckoning with Life by Gillian Rose (1995)
The English philosopher’s memoir-in-essays got on my radar when it was mentioned in two other nonfiction works I read in quick succession (one of my Book Serendipity incidents of late 2019): Notes Made while Falling by Jenn Ashworth and My Year Off by Robert McCrum. I had in mind that it was a cancer memoir, and while receiving a terminal diagnosis of ovarian cancer in her early forties is indeed an element, it is a wide-ranging short book that includes pen portraits of remarkable friends – an elderly woman, a man with AIDS – she met in New York City, musings on her Jewish family history and the place that religious heritage holds in her life, and memories of the contrast between the excitement of starting at Oxford and the dismay at her mother’s marriage to her stepfather (from whom she got her surname, having changed it by deed poll at age 16 from her father’s “Stone”) falling apart.
The mishmash of topics and occasional academic jargon (e.g., “These monitory anecdotes indicate, however, the anxiety of modernity” and “Relativism of authority does not establish the authority of relativism: it opens reason to new claimants”) meant I didn’t enjoy this as much as I’d expected to.
Words about love:
“However satisfying writing is—that mix of discipline and miracle, which leaves you in control, even when what appears on the page has emerged from regions beyond your control—it is a very poor substitute indeed for the joy and the agony of loving.”
“There is no democracy in any love relation: only mercy. … each party … is absolute power as well as absolute vulnerability. … I am highly qualified in unhappy love affairs. My earliest unhappy love affair was with Roy Rogers.”
“To grow in love-ability is to accept the boundaries of oneself and others, while remaining vulnerable, woundable, around the bounds. Acknowledgement of conditionality is the only unconditionality of human love.”
If you read just one … Make it The Emma Press Anthology of Love. (But, if you’re feeling strong, add on Love After Love, too.)