'I wanted to honour Iona': An excerpt from Aida Austin's epilepsy memoir, 'Seized'

Aida Austin wrote a column for Weekend magazine for seven years. Now she is publishing her first book, a beautiful and unflinching memoir that tells the story of her daughter's epilepsy, and a mother's love

Sat, 06 Dec, 2025 - 01:00

Gemma Fullam

Aida Austin’s childhood summers were spent in West Cork, where her parents had a “tiny, ropey old cottage”.

Her dad, a Dubliner, was a teacher, so come end of term, the whole family — Austin has five siblings — would pile into the car and take the Innisfallen ferry from the UK to Cork, happily foregoing London life for summer in the Rebel County.

“Even as a child, I just was blown away by the peace of it and the beauty of it and the unchanged nature of it,” she says now.

Serendipity intervened in adulthood, when a work opportunity created a chance for Austin’s young family to move to West Cork and build a life there.

“We were frantic to get out of London,” mum-of-four Austin recalls, “we had two smallies at the time and I was pregnant with my third.”

Iona is Austin’s fourth and youngest child. The baby of the family was two and a half years old when she began having epileptic seizures.

The year was 1997. It was an evening just like any other, with the familiar wind-down routine well underway.

They had put the children to bed and were back downstairs, busily tidying away the kids’ toys, when they heard a strange noise from upstairs. They didn’t know it then, but their toddler daughter was having her first seizure.

“Family illness detonates like this: when you feel safe, your front door opens and a bomb is thrown in,” Austin, who is now 60, writes in Seized, her memoir of the years that followed.

“I wanted to honour Iona,” she says simply, when I ask her why she wrote the book.

Austin, who is an artist and a writer — she was an Irish Examiner columnist for seven years — is speaking to me over Zoom from her West Cork home.

The flower-patterned butter-yellow shirt she’s wearing lights up her face, while the riotously beautiful garden she loves so much adds vibrant pops of green through the windows behind her.

Aida Austin speaks openly in her kitchen about Iona’s lifelong epilepsy and the love and resilience that shaped their story. “As a mother, you feel you have to be strong all the time—you’d do anything for your children.” Picture Chani Anderson.

Committing to print an account of the years that followed the onset of Iona’s epilepsy was a way of making sense of it all, Austin tells me.

She knew she didn’t want to write “a long streak of misery”, but she did need to offload some pain and fear.

Over 45,000 people in Ireland are living with epilepsy, and an estimated 10,000 to 15,000 of those are living with uncontrolled seizures.

Those statistics from Epilepsy Ireland paint a picture, but they don’t tell the whole story. The human story. Austin’s book does.

“To be honest, I think my book could easily have ended up being nothing more than an unflinching exploration of maternal fear,” she explains.

“But what I really wanted to write was something that would reflect Iona’s experience. And 200 pages on my fear was never going to do that.

“I wanted to acknowledge Iona — and by extension anyone who’s ever felt brutally isolated from normal human experience; anyone to whom things have happened which are so strange and shocking that they feel as if they’re pioneering an unknown, unheard-of path in life. That feeling is one of the loneliest in the world.

“When I was awake in the small hours, and our daughter’s seizures wouldn’t stop, I’d imagine other daughters and other parents somewhere out there in the world, dealing with the same thing.

“I wanted to write something for them that said, ‘you’re not isolated. It’s 3am in the morning and you’re awake. We’re awake too. Your child is in focal status. So is ours. You’re administering buccal midazolam in a state of scarcely controlled panic. So are we. And we will all lie awake until morning while the rest of the world sleeps’.”

During the course of our conversation, Austin references A Heart That Works, actor Rob Delaney’s memoir about his son Henry, who died of a brain tumour at the age of two.

She has recently read it and, while she emphasises that her and Delaney’s situations are “not comparable”, the book really spoke to her.

Delaney’s loss is undeniably tragic, but with the finality of death comes closure. There is grief, yes, but life can, and inevitably does, move on. With chronic illness, there is no closure, because there is no ending.

“I wanted people to understand how a particular life is lived and how that plays out in a family and how it continues,” Austin says.

“I think why I related to what [Delaney] said, that he, I think, was fed by anger, and there is anger there that you are watching your child continuously suffer. I think [writing is] a way of processing it. I started to write something out of me, and then it became the book that it became, which was about a family and about Iona.”

I read Seized in one sitting.

‘A love story’ is how Austin’s literary agent, Marianne Gunn O’Connor, described the beautifully written book, and that is what it is.

It is the story of a mother’s love for her child, of a family’s pulling together and supporting each other through difficult times, a story of resilience, of coping, of hard, difficult days, of finding ways through.

It’s a rollercoaster of a read that will resonate deeply with any parent of a sick child, or indeed any carer.

Anyone who has been there knows, and those who haven’t will, in the pages of Austin’s memoir, find an understanding of what it is like when a loved one is chronically ill.

In the year after her diagnosis, Iona had many days when she experienced multiple seizures, sometimes up to 80 in a 24-hour period.

Medications and treatments were tried and discarded as they failed, until eventually, a drug was found that helped, and while the seizures did not stop, they became less frequent.

A large portion of the book is taken up with Iona’s brain surgery and its aftermath, and the book concludes, epilogue excepted, with a chapter written by Iona herself. (The cover art features her vibrant watercolour of a tree.)

The blending of the two voices, the two perspectives, the mother and the daughter, the parent and the child, the carer and the cared for, give the book a profound emotional depth.

“The book found its own ending somehow,” Austin says.

“My daughter wrote the last chapter and I wrote the very short epilogue so the narrative kind of came to rest in both our voices. It came to rest in an uneasy acceptance that health is not a birthright, that illness is part of the human condition. My daughter didn’t weave in any tidy reassurances for the reader. Neither did I because there aren’t any, apart from love, which was the mainspring for this book.”

Aida Austin reads on her bed—the very place she wrote Seized—a quiet refuge during years of navigating Iona’s complex epilepsy. “Writing became a way to compartmentalise what felt overwhelming.” Picture Chani Anderson.

Austin found the act of writing of the book helpful in that it lent order to her thoughts.

“At the very least it organised the mess in my mind. To reduce the chaos of it all to some sort of order on the page was very satisfying. It gave me a sense of control.”

She did not, however, find the writing of Seized to be cathartic.

“I think for something to be cathartic, feelings have to be dormant, to some extent. They have to be safely enough behind us. And mine aren’t because my daughter’s epilepsy is intractable and its emotional impact is ongoing.

“So the feelings are quite surface, because they’re activated by seizures three or four times a week. A seizure is inherently dangerous. Sometimes life-threatening. So it would be completely bizarre if I wasn’t afraid on some level, most of the time.

“The fear I describe in the book is historical. Attached to past events. But I experienced this same fear yesterday, as it happens.”

Fear, which Austin likens to a “sleeping lion”, comes up repeatedly during our conversation and is something she feels is not talked about enough, if at all, particularly parental fear.

“[Rob Delaney] talked about he had a new capacity for pain. I have a new capacity for fear,” she says, and how could she not, having lived 28 years of her life witnessing her little girl, now a young woman of 30, experience thousands of seizures.

But among the challenges and the down days, there has been an abundance of joy.

“There is a huge amount of laughter in our family; there is a huge amount of fun,” Austin says.

She finds grounding and solace in her garden — “I love gardening. I’m obsessed with flowers. Obsessed.” — and in her art.

In her garden was a mandala, a “big, round bed” that mirrors a mandala she drew for Iona before she went in for brain surgery.

She placed ‘Iona’, her name, in the centre and all around it, wrote names of everyone who loved and supported her, round and round in concentric circles to the edges of the page.

In her chapter, Iona describes how that mandala remains a touchstone for her, a reminder of the love that surrounds her.

When I ask Austin what she would like a reader to get from the book, what her hope would be, her wish is simple and heartfelt.

“I would like readers to be more patient and kind with people who struggle,” she says. “That would be a lovely outcome.”

Seized, a memoir by Aida Austin, is available to purchase from:
Instagram: @aidaaustinart
etsy.com
It is also available to buy in in Kerr’s bookshop in Clonakilty, and at the Examiner shop on Oliver Plunkett St, Cork

EXTRACT

Seizures are immune to perspective.

Perspective is a form of abstraction, which requires distance and distance requires a universe. But there is no universe when my daughter is having a seizure, which means there is no distance. So I cannot choose a perspective. This has to wait till afterwards, when the universe comes back.

When my daughter has a seizure there is just her and harm and me.

It is dawn when my sleep is disturbed by a light touch of psychological terror.

There it is: the sound of a mouse running over a tambourine. I open my eyes.

There it is again, louder now, more like someone is playing tiny finger cymbals behind my daughter’s bedroom door. This sound is the pretty tinkling of her old brass bedstead. A little bit of terror goes a long way - neuromuscular readiness springs me to the side of her bed, where I find her asleep.

Her respiratory waves are smooth but slightly shallow, and the air around her is ruffled, as if she has just shifted position in her sleep.

I watch her for a while as her breathing settles and deepens.

Loveliness lends itself to us when we sleep. This innocent activity reduces us all to the sweetness of infancy. She is sleeping now like a milk-drunk baby in the bed that she was born in, lying on her side, turned away from me with her face in shadow and her back curved gently like a teacup handle.

She stirs, rolling onto her back and as she turns, I catch a faint trace of soap and coconut in the whisked-up air, along with something warmer and homelier - the pheromonal essence of sleep.

Her breathing becomes steady and deepens again. She has one arm flung loosely above her head, palm upwards.

The air is perfectly still.

The world is still here.

I look at her wrist and remember her plump baby ones with creases so deep that her hands looked clicked-on, like Lego. I remember how she slept back then when sleep was innocent and did not weaken her to prey; the way she would roll drowsily into my arms and wake, then sleep again with a murmur or soft wriggle, that was all.

I notice my favourite pillow case, its print, a large charcoal sketch of an urn and roses, is faded now with washing. Her left foot, exposed, is resting on it.

The world is still here when I spot a molecular shiver in her foot.

Caught now in the split-second moment between immobilizing dread and galvanising terror, I watch the tremor rise up the right distal limb to the ipsilateral face. Her eyes open unnaturally wide and unseeing.

Their blue irises deviate suddenly and the world vanishes.

She begins to vibrate.

The oscillation is tight and even: a billion bees buzzing silently underneath her skin. Gathering momentum, becoming looser and more chaotic, it gains traction on her limbs and now, the bed.

The brass bedstead rattles, rattling the air.

She is going.

I clear the area around her of anything hard or sharp, then take my daughter’s hand in mine and stroke her forearm as it stiffens.

I need her to know I’m going with her.

Right on the tipping point of her abduction, my eyes close involuntarily for a second, shutting out its brutality. When I open them, she has gone, her left hand still in mine.

There is a cold, black hole in the world where she used to be and there is a cold black hole in me.

My daughter is not dead. She is not awake. She is not asleep.

Snow White did it well. When she lay in her glass coffin not dead, not awake, not asleep, she was still as stone. There was no aimless force, no injury. Everything remained intact. Glass. Tongue. Teeth. Snow White’s limbo-void was tranquil and serene. In it, she was as elegant and silent as a wildflower.

In my daughter’s limbo-void, there is no peace. Just a violation.

Here in front of me, is the desecration of a soft and girlish bed.

I sit, holding her hand. In the end, it all comes down to being powerless. It is this that does you in. This violation can only be witnessed. It can only be sat out.

When keeping her hand enclosed in mine becomes too difficult, I change my point of contact to her stomach, limb or hair - to any part of her.

I cannot stop her being taken and I cannot stop her being gone but I can refuse to let her disappear beyond the reach of my touch - or voice. So I talk to her. Sometimes I sing. I sing “Jamaica Farewell” by Harry Belafonte, the same song I used to sing to her in seizures when she was little. The same the song my father used to sing to me when I was young.

In this way, I bind her to me. I stroke her. I speak to her. I say, “it’s all ok."

I sing sounds of laughter everywhere and the dancing girls swing to and fro, meanwhile my fear leaps past the fear of a bitten tongue or other injury to the last fear along the line: the cold and sweaty one that centres on her breath. Could it be that this time, she won’t come back? Might this cold, black hole in the world that she left behind be always here? Might it always be in me?

I kneel on the bed, leaning over her to check the colour of her lips, singing ackee, rice, saltfish are nice and the rum is fine any time of year.

Her lips are pink, not dusky. They stay pink.

Afterwards, the world comes back but it does not come back all at once.

A seizure takes the person, leaving just the skin behind like a hollowed-out fruit. It takes a while for the person to fill up the skin again. To become whole.

First, the shaking loses strength and speed. Then comes the battle for breath, her mouth, a wild operculum over frantic lungs. Like a gale has been stuffed inside her lungs and she is trying to get it out.

The bed stops rattling.

Finally, she sleeps and there is peace again. But peace can be a wild thing sometimes. When sleep lowers seizure threshold, no part of it is safe.

The faultline runs the length of sleep, undermining its architecture, weakening every point, turning each breath into a brink.

Is this smooth, deep breath that she is taking now simply a breath, honest and true? Or is it a hiatus between one seizure and the next - is it a counterfeit, a lie?

There is a brief series of myoclonic twitches in her shoulder and her hand.

As she opens her eyes, I flinch.

Slowly, she focuses on me. I can see that she can see me. We see each other: those breaths just now, that interval of peace, was not a temporary truce. My daughter is back. The peace that arrives now is not wild. It rolls in flat and cold and has a particular weight, like sea mist when it barrels in from the horizon, covering the sun.

The violence begins and ends in silence and extraordinary sadness. In the slipstream of a seizure, language breaks its back.

Her mouth opens and closes soundlessly. I watch her gulp like a fish in the bottom of a boat.

“Don’t panic, love,” I say, “don’t try to talk. Your speech will come back soon.” Once, after a seizure, when her speech went missing for too long and my assurances failed to soothe her - and me - I went downstairs to find paper and a pen. On it, panicked, she wrote: “when?” Today, she mouths it.

“Soon,” I say, “very soon, I promise, love.” We wait. I talk from time to time - small bits of calming rubbish here and there to alleviate her terror - and mine - that speech might be stolen forever, for there are no limits to the scope of fear when you meet the unknown.

I push her hair back out of her eyes and ask her if she would like some water.

She nods, then sits up, pulling her T-shirt down from where it has risen up and leans back against the bedstead.

I fetch her a glass of water from downstairs.

She drinks it.

I sit on the bed, my hand resting on her foot.

Absentmindedly, I stroke the front of it.

I look down at it then up at her.

“Hey there Bigfoot,” I say.

Then she does something so normal that it is strange and shocking: she smiles.

Pulling her foot away, she says, “Stop, Mum,” and the universe comes back.

“Size six is biiiiiig,” I say.

“Mum, stop.” “No one will marry you, not with those feet.” “Mum, seriously.” “And hammer-toes. You got those from Grandad.” “You know I hate my fucking feet.” “Language, love.” “Sorry.” “At least you haven’t got my bunion,” I say.

We say nothing for a while.

“I feel weird,” she says, “I think I had a seizure. Did I?”

“Just a small one, love,” I say.