Saturday 16 December 2017

Surviving at sea - the story of caring for a husband with motor neurone disease

Memoir: I Found My Tribe, Ruth Fitzmaurice, Chatto & Windus, hardback, 208 pages, €15.49

Cleansed: The sea provides much-needed escapism for Ruth Fitzmaurice. Photo: Marc Atkins
Cleansed: The sea provides much-needed escapism for Ruth Fitzmaurice. Photo: Marc Atkins
Ruth and husband Simon Fitzmaurice with their five children. Photo: Marc Atkins
I Found My Tribe by Ruth Fitzmaurice

HilaryA White

Mum-of-five Ruth Fitzmaurice charts the challenges of being a carer to a husband with motor neurone disease in this life-affirming and brave memoir.

Tragedy, heart and determination, in that order and propelled by a slight tinge of urgency about things as a family look to you for answers and your own soul cries out for respite from it all. This may just be the chemical reaction that took place within Ruth Fitzmaurice a couple of years ago that led to the mother of five awakening the voice of a talented writer in a widely discussed Irish Times column. Publishers and agents scrambled.

That article was a dexterous, mercury-smooth reflection on Fitzmaurice's life as a mother of young children, a wife to Simon (a sufferer of motor neuron disease) and a member of a swimming group who ritually plunge themselves into the chilly sea water in Greystones seeking invigoration and escape. Her language crackled with energy and colour, and, like this long-form memoir that it prompted, beautifully gilded descriptions that were condensed down to their truest essence. Ed Guiney's Element Pictures has already optioned the film rights.

While career scribes must surely curse Fitzmaurice, there can be no denying the spotlight her story places on the remarkable nature of the human spirit. In 2008, when he was just 34 and Ruth was pregnant with their third child, Simon was diagnosed with this most debilitating of diseases. A filmmaker and scriptwriter, he managed to complete a screenplay and then become the first ever director with MND to make a film (the sweet 2015 coming-of-age tale My Name is Emily, starring Harry Potter's Evanna Lynch). Still able to move his eyes, "eye-gaze" screen technology allowed him to do this and also publish a memoir in 2014.

Perhaps even more impressively, Ruth and Simon rubbished the four-year life expectancy doctors gave them at the time of diagnosis to the point that they find themselves nine years later with two more children who were conceived after Simon returned from hospital with a ventilator in tow (for severe respiratory complications).

"It makes perfect sense to have another baby, because we can," she says simply here. "For me this is survival the only way I know how."

"Survival" is threaded through every sentence of I Found My Tribe, a defiant title if ever there was one. The tribe in question is the small troupe of sea swimmers that casually forms alongside Ruth, and that she dubs 'The Tragic Wives' Swimming Club'. The sea provides challenge, escapism, a smidge of glamour and a dose of fear factor to a life that is ever changing and yet occasionally stultifying. It is baptism water, ceremonial mikva and murky depth all at once, and she comes to depend on it.

There is much to be rinsed off, she quickly confides with impressionistic, almost childlike, candour. The mechanical breaths and "squelching pumps" of her static husband. The revolving door of carers and nurses constantly coming through the house. The drifting sensation that she fears is pulling Simon away from her, and the general hubbub of five confused children all under the age of 10.

It makes for crushing reading in places as Fitzmaurice hides tears from her children, visits her favourite carer in hospital following a grisly road accident and even has to send Simon's beloved basset hound "to the farm". And like all the partners and loved ones who walk into the abyss with people who contract life-changing disabilities, there is pain being unfurled on to tear-damp pages where it needs to be. Much like Helen Macdonald's open-heart surgery in H is for Hawk, Fitzmaurice hides none of the difficult twists in logic that befall a soul under siege.

"Make it stop, why can't you make it stop? Stay with us. We love you. We need you. We don't want to be here without you," she screams to the night at one stage before crying "from a very dark place". The "armour", the "superhero costume" and the "boat" her family sail in are sternly tested.

This hardship is countered thoroughly, however, throughout the compact chapters by the greatest joys of her life. Fitzmaurice can sure cartwheel, a girlish, tree-hugging, skinny-dipping boldness that you come away feeling could be the ultimate weapon in this cold war. She sings about the bedrock of love she and Simon stand on. Memories of their heady courtship, untangling their limbs before heading out in search of delicious food, "light-headed and spent". And there is affirmation when illness dwindled these appetites and another bond took its place.

"The carer-patient bond may not sound so sexy, but it is stronger than the urge to eat." The horizon remains wide to her, viewed as it is at the water's edge. And ever-present, like a multicoloured cast of rabble-rousers chasing light into the corners, are their children - Jack, Raife, Arden, Sadie and Hunter. They bring a charming chaos and a variety of tempo to I Found My Tribe that are fundamental.

Fitzmaurice has indeed arrived ready-formed. She has managed to distil emotional hardship against a mundanely challenging domestic backdrop into something full-bodied and, at times, gorgeously spirited without ever seeming to force either the sincerity of her voice or her clippy, musical style. These are stealthily life-affirming effects rather than mawkish platitudes. Not an easy task, even for the most seasoned of aficionados.

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