Opening up on life with Epilepsy
37-YEAR-OLD EVA NÍ SHÚILLEABHÁIN ONCE STRUGGLED TO TALK ABOUT HER EPILEPSY – BUT THAT’S SLOWLY CHANGING
A 37-YEAR-OLD woman from west Kerry has told The Kerryman that she recently found the strength to be open about her Epilepsy – more than 15 years after first being diagnosed as having the neurological disorder.
Eva Ní Shúilleabháin spoke to this newspaper at her home in Lios Póil ahead of International Epilepsy Day (February 11) and explained that reading others’ stories has helped her to become more comfortable with telling her own story, which began while she was undertaking a postgrad in Galway.
She also spoke of misconceptions of Epilepsy, expressed deep respect for her family’s support over the years, and stressed that Epilepsy can vary greatly from person to person.
“I was 21, in Galway, in a small lecture – and I just collapsed,” she said of her first experience of Epilepsy.
“When I got up, the lecture had stopped, and I couldn’t figure out why. It had to be explained to me what had happened.”
Eva was advised by family to come home, but not long after returning to Lios Póil, she had another ‘absence seizure’ – a brief, sudden lapse of consciousness that would become a fairly regular occurrence in her life, but far less obvious than a Grand Mal seizure the kind of violent muscle contractions that many think of when they think of Epilepsy.
“I went to see doctors and had tests on my brain, although nothing came back,” she said. “I was at home and considering going back to college when I had my first ‘Grand Mal’ seizure, which is a bigger, more obvious seizure. A neurologist in Cork told me I more than likely had Epilepsy, though I struggled to accept that.
“I was put on a small dose of medication and got it under control. I learned the triggers: no late nights or long sleepins; I was told alcohol was a trigger; and I had to take my medication.
“But I went back to college and partying, and I was forgetting my medication. At first this was having no impact, but when I woke up, I’d feel like I used to after having a seizure. When I was on my own, there was nobody to tell me if I’d had one or not, of course.
“Over time, they became more frequent. I was having seizures in lectures or I’d be told I’d been totally spaced out.”
After finishing college, Eva went on to work in Dublin, where she continued to miss medication – but one morning, she noticed bruises on her arms, was unable to remember where they’d come from, and then knew something was wrong. She returned home and had a Grand Mal seizure, and an ambulance had to bring her to hospital. She took time off work and reassessed her situation.
“Dr [Colin] Doherty in Dublin laid down the triggers again: take my medication every day; no late nights; no alcohol; eat properly; sleep properly – and I did all that,” she said. “I got it under control, and it’s still under control.
“What I find is if I break any of those rules, I’m almost guaranteed a seizure. My Epilepsy is largely under control, but the seizures are not entirely gone; I had one at home just before Christmas. It was a setback, and it means it’ll be another two years before I can drive – but that doesn’t matter so much as I work in the Department of Publix Expenditure and Reform in Dublin, where public transport is very good and I can walk most places.”
Eva recalls seeing someone having a Grand Mal seizure when she was younger and feeling sorry for and somewhat wary of the person. Once diagnosed with Epilepsy, she worried that others would act differently towards her, too.
But as time went by, she became more acceptant, and now wants to address a few misconceptions. She feels that the uncontrolled shaking of Grand Mals are the aspect of the disorder most think of – but while they do exist, they’ve been rare enough part in her life, and are only one part of Epilepsy.
“I loved hearing others’ stories, and that helped me get more comfortable,” she says. “Epilepsy Ireland has a Facebook page, and I’d recommend anyone to read through some of the stories on there.
“I must thank Dr Doherty and my family for all their support, and I must thank my poor mother. She brought me all over the country until she was happy she found a neurologist who understood my type of Epilepsy, and she always kept an eye on the different medications I was put on. It has dominated her life as much as mine.
“I was always uneasy telling people I had this, and it’s still difficult to say straight out that I have Epilepsy. But when you accept it, it’s much easier to tell people.”
For more information, you can visit www.epilepsy.ie; or join the Epilepsy Ireland Facebook page at www. facebook. com/groups/ JoinEpilepsyIreland/. Eva has worked with Raidió na Life for five years and hopes to continue with this soon. She looks forward to attending an Epilepsy Ireland Sporting Legends Night, near the Aviva Stadium, tomorrow.