Tag Archives: motor neurone disease

Five Nonfiction Review Books: Hammond, Iorio, Rault, Riley & Rutt

A diagnosis of motor neurone disease; a father’s dispiriting experience of censorship trials. An illustrated history of fonts; an essay on grief; a cold weather-appropriate record of geese-watching. I gear up for Nonfiction November by catching up on five nonfiction review books I’ve been sent over the last couple of months. You can’t say that I don’t read a variety, even within nonfiction! See if one or more of these tempts you.

 

A Short History of Falling: Everything I Observed about Love whilst Dying by Joe Hammond

Hammond, a playwright, takes a wry, clear-eyed approach to his diagnosis of motor neurone disease (ALS) and the knowledge that his physical capacities will only deteriorate from here on out. “New items arrive almost daily and I am unexpectedly becoming the curator of the Museum of my own Decline.” Yet he also freezes funnier moments, like blowing his nose on a slice of bread because he couldn’t reach a tissue box, or spending “six hours of my fiftieth birthday sat on this hospice toilet, with a bottle of good Scotch wedged between my knees.”

Still, Hammond regrets that he’s become like a third small child for his wife Gill to look after, joining his sons Tom and Jimmy, and that he won’t see his boys grow up. (This book arose from an article he wrote for the Guardian in 2018 about making 33 birthday cards for his sons to open in the years after his death.) Although I wasn’t as interested in the details of Hammond’s earlier life, or his relationship with his narcissistic father, I appreciated his quiet acceptance of disability, help and impending death.

Favorite lines:

“I’ve waited all my life to know this peace. To know that I am nothing more than this body.”

“my place in all of this is becoming smaller, historic and just the right size of important.”

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

 

An Author on Trial: The Story of a Forgotten Writer by Luciano Iorio

The author’s father, Giuseppe Jorio, was a journalist and schoolteacher who wrote an infamous novel based on an affair he had in the 1930s. Using italicized passages from his father’s diary and letters to Tina, who was 19 when their affair started, Iorio reconstructs the sordid events and unexpected aftermath in fairly vivid detail. Tina fell pregnant and decided to abort the baby. Meanwhile, Giuseppe’s wife, Bruna, got the truth out of him and responded with more grace than might be expected. Giuseppe was devastated at the loss of his potential offspring, and realized he wanted to have a child with Bruna. He bid Tina farewell and the family moved to Rome, where the author was born in 1937.

Giuseppe’s novel inspired by the affair, Il Fuoco del Mondo (The Fire of the World) was rejected by all major publishers and accused of obscenity in a series of five trials that threatened his reputation and morale. It’s a less familiar echo of the Lady Chatterley’s Lover trial, and a poignant portrait of a man who felt he never lived up to his potential because of bad luck and societal disapproval. I enjoyed learning a bit about Italian literature. However, inconsistent use of tenses and shaky colloquial English (preposition issues, etc.) suggest that a co-writer or translator was needed to bring this self-published work up to scratch.

With thanks to the publicist for the free copy to review as part of a blog tour.

 

ABC of Typography by David Rault

[Translated from the French by Edward Gauvin]

From cuneiform to Gutenberg to Comic Sans, this history of typography is delightful. Graphic designer David Rault wrote the whole thing, but each chapter has a different illustrator, so the resulting book is like a taster course in comics styles. As such, I would highly recommend it to those who are fairly new to graphic novels and want to see whose work appeals to them, as well as to anyone who enjoyed Simon Garfield’s book about fonts, Just My Type.

I found it fascinating to explore the technical characteristics (serif vs. sans serif, etc.) and aesthetic associations of various fonts. For instance, I didn’t realize that my mainstay – Times New Roman – is now seen as a staid choice: “Highly readable, but overexposed in the early days of the Internet, it took on a reputation for drabness that it hasn’t shed since the ’90s.” Nowadays, some newspapers and brands pay typeface creators to make a font for their exclusive use. Can you name the typeface that is used on German road signs, or in Barack Obama’s campaign materials? (You’ll be able to after you read this.)

With thanks to SelfMadeHero for the free copy for review.

 

Time Lived, Without Its Flow by Denise Riley

What Virginia Woolf’s essay “On Being Ill” does for sickness, this does for bereavement. Specifically, Riley, whose son Jake died suddenly of a heart condition, examines how the experience of time changes during grief. “I’ll not be writing about death, but about an altered condition of life,” she opens. In short vignettes written from two weeks to three years after her son’s death, she reflects on how her thinking and feelings have morphed over time. She never rests with an easy answer when a mystery will do instead. “What if” questions and “as if” imaginings proliferate. Poetry – she has also written an exquisite book of poems, Say Something Back, responding to the loss of Jake – has a role to play in the acceptance of this new reality: “rhyme may do its minute work of holding time together.”

Max Porter provides a fulsome introduction to this expanded version of Riley’s essay, which first appeared in 2012. This small volume meant a lot more to him than it did to me; I preferred Riley’s poetic take on the same events. Still, this is sure to be a comfort for the bereaved.

Favorite passages:

“I’ll try to incorporate J’s best qualities of easy friendliness, warmth, and stoicism, and I shall carry him on in that way. Which is the only kind of resurrection of the dead that I know about.”

“I don’t experience him as in the least dead, but simply as ‘away’. Even if he’ll be away for my remaining lifetime. My best hope’s to have a hallucination of his presence when I’m dying myself.”

With thanks to Picador for the free copy for review.

 

Wintering: A Season with Geese by Stephen Rutt

Rutt’s The Seafarers: A Journey among Birds, one of my favorite recent nature/travel books, came out in May. What have we done to deserve another publication from this talented young author just four months later?! I didn’t enjoy this as much as The Seafarers, yet it does a lot of the same things well: it provides stunning word portraits of individual bird species, explores the interaction between nature and one’s mental state, and gathers evidence of the cultural importance of birds through legends and classical writings.

Here the focus is on geese, which the author had mostly overlooked until the year he moved to southern Scotland. Suddenly they were impossible to ignore, and as he became accustomed to his new home these geese sightings were a way of marking the seasons’ turn. Ethical issues like hunting, foie gras and down production come into play, and, perhaps ironically, the author eats goose for Christmas dinner!

Rutt’s points of reference include Paul Gallico (beware plot spoilers!), Aldo Leopold, Mary Oliver and Peter Scott. The writing in this short book reminded me most of Horatio Clare (especially The Light in the Dark) and Jim Crumley (who’s written many short seasonal and single-species nature books) this time around.

A favorite passage (I sympathize with the feelings of nomadism and dislocation):

“I envy the geese their certainty, their habits of home. I am forever torn between multiple places that feel like home. Scotland where I live or Suffolk, Essex, Norfolk: the flatlands of golden evenings and reeds, mud and water and sand. The distant horizon and all the space in between I grew up with, which seems to lurk somewhere, subconsciously calling me back.”

[Neat aside: My husband and I both got quotes (about The Seafarers) on the press release for this book!]

With thanks to Elliott & Thompson for the free copy.

 

Would you be interested in reading one or more of these?

I Found My Tribe by Ruth Fitzmaurice

Ruth Fitzmaurice’s husband, a filmmaker named Simon, was diagnosed with motor neurone disease in 2008. Like Stephen Hawking, he is wheelchair-bound and motionless, communicating only through the mechanical voice of an eye gaze computer.

My husband is a wonder to me but he is hard to find. I search for him in our home. He breathes through a pipe in his throat. He feels everything but cannot move a muscle. I lie on his chest counting mechanical breaths. I hold his hand but he doesn’t hold back. His darting eyes are the only windows left. I won’t stop searching.

Between their five children under the age of 10 (including twins conceived after Simon’s diagnosis), an aggressive basset hound, and Simon’s army of nurses coming and going 24 hours a day, this is one chaotic household. The recurring challenge is to find pockets of stillness – daydreaming, staring at trees outside her window – and to learn what things can bring her back from the brink of despair, again and again.

Often these are outdoor experiences: a last hurrah of a six-month holiday in Australia, running, and especially plunging into the Irish Sea with her “Tragic Wives’ Swimming Club” – a group that includes her friend Michelle, whose husband is also in a wheelchair after a motorbike crash, and her favorite of Simon’s nurses, Marian, who has a serious car accident.

Rather than a straight chronological narrative, this is a set of brief thematic essays with titles like “Dancing,” “Fear,” “Twins” and “Holidays.” Fitzmaurice’s story is one you piece together through vivid vignettes from her home life. Her prose is generally composed of short, simple phrases; as with Cathy Rentzenbrink’s The Last Act of Love, you can tell there is deep emotion pulsing under the measured sentences. With such huge questions in play – How much can one person take? What would losing one’s mind look like? – there’s no need for added drama, after all. Instead, the author turns to whimsy, toying with the superhero cliché for caregivers and wondering what magic might be at work in her situation.

I was particularly impressed by how Fitzmaurice holds the past and present in her mind, and by how she uses an outsider’s perspective to imagine herself out of her circumstances. At times she uses the third person for these visions of herself as a younger woman newly in love:

The young wife at her kitchen table knows about deep magic. But I know her future. Life is going to push and pull her like a wave. She doesn’t have a choice and neither do I. Come with me, dear girl, sit at my tablecloth. The journey is upon us and to survive it, you can’t just ride the wave, you have to become one. Can we do this? Let’s go. Becoming a wave just might be the deepest magic of them all.

There are so many poignant moments in this book: memories of their determinedly vegetarian wedding; pulling out all the stops for Simon’s fortieth birthday with customized art installations to brighten his view; leaving the marital bed – now a “hospital contraption” – after six years of MND being a part of their lives; a full moon swim with the Tragic Wives on her and Simon’s anniversary. But all the quiet, everyday stuff has power too, especially her interactions with her precocious children, who are confused about why Dadda is like this.

If I had one tiny complaint, it’s that Simon feels like something of a shadowy figure. In flashbacks we get a real sense of his forceful personality, but this new, silent Simon in the wheelchair is a mystery. Only once or twice does she record words he ‘says’ to her via his computer. Perhaps this is inevitable given how locked into himself he’s become. However, he was still capable of becoming the first person with MND to direct a feature film, on location in County Wicklow (My Name Is Emily). He has told his own story elsewhere; in his wife’s telling, their ventures now seem so separate that they rarely appear as equal partners.

It’s my tenth wedding anniversary tomorrow; as I was reading this I kept thinking that, for as much as I complain (to myself) about how hard marriage is, I’ve had it so easy. The stresses a couple face when caregiving of one partner is involved are immense. Fitzmaurice has found herself part of a tribe she probably never wanted to join: the walking wounded, with pain behind their eyes and worry never far from their minds. But in the midst of it she’s also found the band of family and friends who help her pull through each time. Her lovely book – wry, wise, and realistic – will strike a chord with anyone who has faced illness and family tragedy.

My rating:


I Found My Tribe is published in the UK today, July 6th, by Chatto & Windus. My thanks to the publisher for the review copy.

Note: Fitzmaurice got her book deal on the strength of a series of pieces she wrote for the Irish Times. You can read an extract from the book here. Film rights to her story have been sold to Element Pictures; more details are here. A documentary about Simon’s life, It’s Not Yet Dark, based on his memoir of the same title, has recently been released. For more information see here (this article also showcases multiple family photos).

Update: Simon Fitzmaurice died on October 26, 2017, aged 43.