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.
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.