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Model Kelly Horrigan on epilepsy: ‘I thought I’d always need people to monitor me’
A picture of health – model Kelly Horrigan. Picture by Gerry Mooney.
Kelly today. Picture by Gerry Mooney
Modelling, paradoxically, provided a safe space for Kelly
Kelly with her mum
Kelly Horrigan (extreme right) at a Louise Kennedy show
Kelly with long-time love Steve
Rosanna Davison
Thalia Heffernan
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‘It’s seven years since I had a seizure,” says Kelly Horrigan with a smile. “I’ve never really spoken about it before now. I was so worried that if I said anything, I would jinx it.”
She was 15 when she experienced her first seizure and already working as a model, having been signed to an agency earlier that year.
“I had never thought about modelling,” she says. “It was only because I was so tall, and everyone would suggest it to me, that I ended up going into the agency. My mam came to the first few jobs with me, I was so painfully shy. But I think it really helped –
I wouldn’t be as outgoing as I am now if not for modelling. I feel like I have the mind of someone who’s way older, but it’s just because I have been working for so long.” She loved it right from the start.
Kelly was at home when she experienced that first epileptic seizure. A neurological disorder which affects the brain, the condition is more common in young children and older adults, and among slightly more men than women.
In Ireland, nearly 40,000 people suffer from the disorder: more than 10,000 are children and more than 10,000 are women of childbearing age.
Medication can control seizures for about 70pc of people, and in some cases, surgery is successful – but a person can be seizure-free for years and then experience a relapse. An episode can occur without cause, however, missing medication, consuming alcohol, a lack of sleep, stress or illness can be triggers. In half of cases there is no known cause for a person having epilepsy. Genetic factors or developmental problems, head injuries, strokes, illness, or lack of oxygen, can also be triggering.
At home in her bedroom that first time, Kelly experienced a seizure that caused her to lose consciousness. She didn’t know what was happening, she tells the Sunday Independent now by Zoom from the house in Newbridge that she bought with her boyfriend Steve Moore just before lockdown began last March.
Kelly, who is particularly close to her parents, Michelle and Dean, didn’t tell anyone what had happened.
“My Nanny was really sick. She was living abroad, and my mom was super busy trying to get her home. I didn’t want to add any extra stress. I’d come out of it, and not really know what had happened – I would wake up really confused.”
At first she thought she might be experiencing panic attacks. A couple of weeks after the seizures began, she had one in school, and she recalls the discomfort of losing control in front of her classmates. “I remember being really embarrassed. I think at the start, a lot of people thought I was joking. I was in a chair, and I think they were like ‘what is she doing?’”
Eight weeks of tests and scans followed, before a diagnosis was eventually reached. “At the time it was a huge relief because I thought that it was going to end: ‘we know what it is, I’ll go on medication and that’s going to be the end of it.’ Little did I know it can take years for people to get it under control.”
In fact, for the next three-and-a-half years, as her doctors worked to get her medication dose right, and figure out what her triggers might be, she had multiple seizures each week. “They were constant,” she explains. “I could have three or four in a day.”
Ironically, stress can be a trigger for epilepsy, so she found herself in a situation where the stress caused by the possibility of a seizure served to compound the problem.
“I wouldn’t consider myself to be someone who gets stressed easily. But at the time, I was so frightened and because it was changing my life so much, it was really stressing me out, which made it a vicious cycle.”
Being a teenager is a nightmare of self-consciousness at the best of times. Kelly remembers the constant anxiety at the thought of who would be around when she might have a seizure. “There’s little things, like you can lose control of your bladder, that’s obviously very embarrassing.”
Generally, an aura, which she describes in her case as a tightening of the body, would warn her that a seizure was imminent, and she would try to make it to the school receptionist. “She was just very caring, it didn’t faze her. I don’t know for me whether the word ‘aura’ really describes it well – it’s more of a physical feeling. My whole body would tense, and I would start to get a bit dizzy.”
Afterwards, there could be an intense feeling of exhaustion. On other occasions, if a seizure was not as intense – but involved a trance-like state that could last for as little as 10 or 20 seconds, rather than convulsions – she would continue her day,
Getting involved as a bystander when someone is having a seizure is very dangerous, she cautions.
“You should never pin somebody down. That’s very stressful, and also dangerous for the other person who has no control over their body. Really, you need to let it run its course. Obviously, little things like putting something under their head or, you know, if somebody is having a seizure and they fall onto the street, trying to take them away from traffic, obviously.”
If a seizure lasts for more than five minutes, or you don’t know whether this is a person’s first spell, call an ambulance, she adds.
On one occasion, she describes walking to school on her own, and realising an attack was coming on. She called her mum. “As she answered, I went unconscious and started having a seizure. But my mom sensed what was happening, we are very in tune with each other.” She drove the route she knew Kelly would take to school, coming upon her daughter conscious but lying on the ground.
“The funny thing was, nobody helped me,” says the 25-year-old now. “Nobody came over when I was on my own. That upset me a lot. After that I never wanted to be on my own. That was kind of what changed the game for me.”
From then on she would sleep with her own and her parents’ door open. The family bought baby monitors and Kelly, then 17, carried a little bell with her about the house.
“I’d ring it if I was upstairs and had a seizure, and my mom would hear me. My life wasn’t really my own anymore.”
Her boyfriend Steve was a huge source of comfort. They both grew up in Newbridge, meeting through mutual friends when she was 18. Steve now owns a local barber.
“He’s the most positive person I know. He’s one of those people that just goes with the flow. We moved to London together when I was 18 and I always felt very safe when I was with him.”
Kelly is now a full-time model and her clients include big-names such as Arnotts, Brown Thomas, Charlotte Tilbury, L’Oréal and Boohoo. She has worked abroad in Milan and across Britain.
The couple’s move to London after school was to give her career a chance to flourish. They stayed for six months, returning when their lease ended, both feeling slightly homesick.
“I definitely felt safer when I was here in Ireland, and I had everyone around me,” says Kelly, who has an older sister Gemma. “But I didn’t want anything to hold me back. Modelling can be such a short career. I never wanted to regret not going for it when I had the chance.”
In fact, work has always been a relatively safe space. “I’ve only ever had one seizure at a job. I think that was because I was in my element at work, I was relaxed and mellow. Modelling was one of the best things that I ever did.”
But when her epilepsy first began, Kelly worried it might put an end to her fashion career.
“One of the big misconceptions is that epilepsy is caused by flashing lights. I thought ‘that’s that, then’. In fact, only three per cent of people are photosensitive. I’ve never been triggered. I think modelling was my haven.”
Apart from Instagram collaborations, work has mostly ground to a halt in the last year. “At the start I thought I wouldn’t ever get back to work – I thought my career was ended to be honest.”
It was a worrying time and she thought she might have to go back to college. “This is all I’ve ever done. It wasn’t so much the lockdown, it was more what’s going to happen in the future? People kept asking me what my plan B was...” – a question she found irritating, pointing out that it’s not a question those in other careers get.
Does she think that modelling has an age limit? “Particularly now, I don’t think it does,” Kelly says, “especially in Ireland. It’s definitely getting more diverse with age and size, so I think that’s not an issue.” On the contrary, she expects to get busier as she grows older.
On the whole, she hasn’t found lockdown too challenging.
“I’m kind of getting used to it now. I miss the atmosphere of being on a shoot and meeting people, but I’m a person who likes my own company, so I don’t really mind being at home.”
It was around the time that Kelly was in London that the seizures began to taper off. “That was almost harder than having them all the time, it was just so frustrating,” she says, recalling going for days, or weeks, without one, then having an episode and feeling like she was back to square one.
“I never thought I’d be able to drive a car, because you have to be a year free [of seizures] to drive. Nobody had any answers, I didn’t know anyone who has epilepsy. The only thing that gave me any hope was success-story videos online, of people who had come through.”
It wasn’t until she had gone six months without an episode that she began to believe this might be the end of her epilepsy journey. At the time, she didn’t speak to anyone about that hope; Kelly and her mother had a sort of unspoken pact. Say nothing, don’t jinx it. To this day, her father prefers not talking about it.
“He says it was the hardest time of his life and he just hates reliving it. I understand that. I mean, I think it’s worse actually for the people who watch it.”
After a year, Kelly got the car she had spent so long saving for.
“All those little things become huge milestones. Things that other people wouldn’t think of at all.”
A part of her assumed she would always need people to monitor her, and that loved ones would always be worried. “Just being able to be on my own is the biggest thing, because epilepsy takes that from you.”
Her stress levels, previously so elevated, have all but disappeared. “I’m horizontal, I’m so relaxed,” she smiles. “I’ll go with the flow. Whereas that just wouldn’t have worked back then. Any little hiccup would freak me out.”
She describes getting notes from her parents to excuse her from aspects of school trips, and how looking back at her teenage self, she feels somewhat sad.
“If anything was out of the ordinary, I’d be so worried. I think when you’re in it, you kind of just get on with it. But in hindsight, I feel sorry for the 16-year-old me.”
But then a huge grin envelopes her face.
“I never thought that I’d live the life that I’m living now. Nothing about my life is really any different to the way it was before I had epilepsy, which I never thought would happen.”
For more information see epilepsy.ie
Role model activists: Five raising awareness
Roz Purcell
Former model and Miss Universe Roz Purcell regularly uses her Instagram feed to speak about her past struggles with an eating disorder. She also posts untouched, casually posed shots of herself to offset the cover images of women so often retouched in the media.
Hannah Devane
Model Hannah Devane suffered from endometriosis for almost a decade before receiving a diagnosis. Like many women who experience the condition, her symptoms were ignored, disbelieved, or underplayed by many medical professionals before receiving treatment. She recently appeared in a photo exhibition with 17 other ‘endo warriors’ to highlight the condition, and blogs about her experience on heelsandhormones.net.
Thalia Heffernan
Thalia Heffernan is the proud owner of two rescue lurchers, Leonard and Charlie. As well as enjoying a career as one of Ireland’s most successful models, she is a passionate advocate for the welfare of animals.
Amber Jean Rowan
The model first experienced alopecia when she was 15 and she began wearing wigs. The founder of Hair Free (hairfree.life), an online space that offers advice about hair loss, she has appeared regularly in her modelling work without wigs. She is about to launch her range of ethical hair pieces at amberjeanshop.com.
Rosanna Davison
The former Miss World moved the country to tears when she told Ryan Tubridy the devastating story of having suffered 14 miscarriages. Rosanna and her husband Wes finally had their first child through surrogacy, before Rosanna went on to become pregnant with twin boys.
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