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?
[Note: A shortened, edited version of this review appeared in the June 15th, 2018 issue of the Church Times.]
Proctor McCullough isn’t a churchgoer. He’s not even particularly religious. Yet somehow he senses that God is calling him to build a chapel, with a little house beside it, on a cliff in the southwest of England. It’s a source of bewilderment for his partner, Holly, and their London friends. Is Mac mentally ill, or having a particularly acute midlife crisis? He’s handed off from a minister to a therapist to a neurologist, but no one knows what to make of him. This forty-four-year-old father of two, an otherwise entirely rational-seeming advisor to the government on disaster situations, won’t be deterred from his mission.
It’s important to get a sense of the way this character speaks:
I want a structure that will move people to contemplate something other than all the obvious stuff … to be confronted with a sense of something and only be able to define it as Other.
God is the transcendent Other for whom creation, what we know as life, is a gratuitous act of love, a dispossession of a portion of His infinite creativity given over to our thriving. It is a gift from His infinite excess. That we can know Him at all is because of the possibility of this excess within us, which we experience as love, art, great feats of the mind. Our bounty is Him.
Down at the project site, Mac acquires four young workers/disciples: Rebecca, Nathaniel, Terry and Rich. Rebecca is a sarcastic, voluptuous teenager who will be off to Cambridge in a few months. She perhaps represents vanity, temptation and judgment, while the other three are more difficult to slot into symbolic roles. Terry is a dreadlocked lager lout who takes care of a mother with early dementia; contrary to appearances, he’s also a thinker, and takes to carrying around a Bible along with a collection of other theological works. Nat and Rich are more sketch-like figures, just ciphers really, which became problematic for me later on.
With Mac we shuttle between the building site and his home in London for weeks at a time. The idea of incorporating Pascal’s mystical hexagon into the church design captivates him, and the costs – initially set at £100,000 – balloon. Meanwhile, his relationship with Holly is strained almost to the breaking point as they each turn to alternative confidants, and there’s a renegotiation process as they decide whether their actions have torn them apart for good.
Like Sarah Moss, Neil Griffiths realistically blends serious concepts with everyday domestic tasks: sure, there may be a God-ordained chapel to build, but Mac also has to do the shopping and get his six-year-old twins fed and in bed at a decent hour. If Mac is meant to be a Messiah figure here, he’s a deeply flawed one; he can even be insufferable, especially when delivering his monologues on religion. If you’re like me, you’ll occasionally get incensed with him – particularly when, at the midpoint, he concocts a Clintonian justification for his behavior.
All the same, the themes and central characters were strong enough to keep me powering through this 600-page novel of ideas. Mac’s violent encounters with God and with the nature of evil are compelling, and although some of the events of the last third push the boundaries of credibility, it’s worth sticking with it to see where Griffiths takes the plot. There’s no getting past the fact that this is a dense theological treatise, but overlaid on it is a very human story of incidental families and how love sustains us through the unbearable.
If I had to point to the novel’s forebears, I’d mention Hamlet, A.S. Byatt’s The Virgin in the Garden, Michael Arditti’s Easter, and even Ayn Rand’s The Fountainhead. If you’ve read any Dostoevsky (I haven’t, yet) or Iris Murdoch, you’ll likely spot philosophical echoes. The title itself is from Wallace Stevens. It’s all unabashedly highbrow, and a greater than average familiarity with the Christian tradition is probably key. For the wary, I’d suggest not trying too hard to read metaphorical significance into character names or chapter and section titles – I’m sure those meanings are in there, but better to let the story carry you along rather than waste time trying to work it all out.
While reading this novel I was bitterly regretting the demise of Third Way magazine; it would have been a perfect place for me to engage with Griffiths’ envelope-pushing theology. I was also wishing I was still involved with Greenbelt Festival’s literature programming, as this would make a perfect Big Read. (Though however would we get people to read 600 pages?! In my experience of book clubs, it’s hard enough to get them to read 200.)
I’m grateful to Dodo Ink (“an independent UK publisher publishing daring and difficult fiction”) for stepping into the breach and taking a chance on a book that will divide Christians and the nonreligious alike, and to publicist Nicci Praça for the surprise copy that turned up on my doorstep. This turned out to be just my sort of book: big and brazen, a deep well of thought that will only give up its deeper meanings upon discussion and repeat readings.
As a God Might Be was published in the UK by Dodo Ink on October 26th. This is Neil Griffiths’ third novel, after Betrayal in Naples (2004) and Saving Caravaggio (2006). He says that this most recent book took him seven years to write.
My reading has tipped more towards physical books than e-books recently, and my book acquisitions have been getting rather out of hand after some cheeky charity shopping and an influx of review copies. Plus this afternoon we’re off to Bookbarn International, one of my favorite secondhand bookstores, for an evening event – and naturally, we’ll fit in some shopping beforehand. It would be rude not to after traveling all that way.
With all this tempting reading material piling up, I’ve been thinking about some of the traits I most appreciate in books…
Omnibus editions: two to four books for the price of one. What could be better?
Built-in ribbon bookmarks: elegant as well as helpful. I also love how Peirene Press releases come with a matching paper bookmark for every three-book series.
Everything about the hardback edition of Claire Tomalin’s Dickens biography is gorgeous, in fact. I especially love the vintage illustrations on the endpapers and the half-size dustjacket.
Deckle edge is one of my special loves. For the most part it’s unique to American books (over here I’ve heard it complained about as looking “unfinished”), and always makes me think nostalgically about borrowing books from the public library in my parents’ town.
It may sound shallow, but I love these four novels almost as much for their colorful covers as for their contents. (Is it any wonder one of my favorite tags to use on Instagram is #prettycovers?) Several of these covers have raised lettering as well.
The History of Bees is one of the most attractive physical books I’ve acquired recently. The dustjacket has an embossed image; underneath it the book itself is just as striking, with a gold honeycomb pattern. There are also black-and-white bees dotted through the pages.
Colored text blocks (also called sprayed edges) are so unexpected and stylish.
And now for a few physical book traits I’m not as fond of. Perhaps my biggest pet peeve, impossible to photograph, is those matte covers that get permanent fingerprints on them no matter how gingerly you try to handle them.
I wish proof copies didn’t often come in nondescript covers that don’t give a sense of what the finished book will look like. (No ice cream cone on Narcissism for Beginners; no leaping fox on English Animals.) However, keeping in mind that I’m lucky to be reading all these books early, I mustn’t be a greedy so-and-so.
All Fitzcarraldo Editions books are paperbacks with French flaps. Another book I’m reading at the moment, As a God Might Be by Neil Griffiths (from Dodo Ink), also has French flaps. It’s not that I dislike them per se. I just wonder, what’s the point?