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.
Erin Moore has returned to her family’s rural home for Queen’s Birthday (now a dated reference, alas!), a long weekend in New Zealand’s winter. Not a time for carefree bank holiday feasting, this; Erin’s mother has advanced motor neurone disease and announces that she intends to die on Tuesday. Aunty Wynn has a plan for obtaining the necessary suicide drug; it’s up to Erin to choreograph the rest. “I was the designated party planner for this morbid final frolic, and the promise of new failures loomed. … The whole thing was looking more and more like the plot of a French farce, except it wasn’t funny.”
Drawing on her own family history, Morris has crafted an absorbing story set in Sarajevo in 1992, the first year of the Bosnian War. Zora, a middle-aged painter, has sent her husband, Franjo, and elderly mother off to England to stay with her daughter, Dubravka, confident that she’ll see out the fighting in the safety of their flat and welcome them home in no time. But things rapidly get much worse than she is prepared for. Phone lines are cut off, then the water, then the electricity. “We’re all refugees now, Zora writes to Franjo. We spend our days waiting for water, for bread, for humanitarian handouts: beggars in our own city.”
The book aims to situate bisexuality historically and scientifically. The term “bisexual” has been around since the 1890s, with the Kinsey Scale and the Klein Grid early attempts to add nuance to a binary view. Shaw delights in the fact that the mother of the Pride movement in the 1970s, Brenda Howard, was bisexual. She also learns that “being behaviourally bisexual is commonplace in the animal kingdom,” with many species engaging in “sociosexual” behaviour (i.e., for fun rather than out of reproductive instinct). It’s thought that 83% of bisexuals are closeted, mostly due to restrictive laws or norms in certain parts of the world – those seeking asylum may be forced to “prove” bisexuality, which, as we’ve already seen, is a tough ask. And bisexuals can face “double discrimination” from the queer community.
less-understood sense. One in 10,000 people have congenital anosmia, but many more than that experience it at some point in life (e.g., due to head trauma, or as an early sign of Parkinson’s disease), and awareness has shot up since it’s been acknowledged as a symptom of Covid. For some, it’s parosmia instead – smell distortions – which can almost be worse, with people reporting a constant odour of smoke or garbage, or that some of their favourite aromas, like coffee, were now smelling like faeces instead. Such was the case for Totaro.
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.”
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.
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.
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.”
Rutt’s 