An entry to the 2025 Irish Epilepsy League writing competition was from medical student Áine Farrell.
You can read Áine's entry in full below...
One right hand, one left hand and epilepsy in between
The first moment I experienced my dad having a seizure will forever be etched in my memory. The sun was shining through the window and fell upon the mess of monochrome jigsaw pieces strewn across the kitchen table. RTE Radio One was humming in the background as my dad and I raked through jigsaw pieces. Granted, a 1000 piece jigsaw puzzle was very ambitious for a 5 year old but with the help of the engineer beside me it seemed achievable. Suddenly, without warning, my dad was fitting. Vibrations seemed to shudder through the room and into my bones. I looked around in panic, desperately looking for help or comfort. No words can describe the fear that I experienced in that moment. As the years went on, I understood properly the ins and outs of my dad’s epilepsy, a condition that certainly doesn’t define him. Although I have since learnt how to deal with moments like this, fear still rushes over me seeing my dad in such a vulnerable position.
I had never really asked my dad when he was diagnosed or how he was diagnosed, which in hindsight really was a defining moment of his life. His journey with epilepsy began at the age of 3 with a series of episodes where he lost consciousness. This led to his diagnosis with grand mal seizures. As the youngest of 4 children, it was definitely a scary moment for his whole family. Little did they know at the time, they faced a long road ahead, a road of challenges, learning curves, and resilience. From what he describes, his teens were a turbulent time of drug trial and error, trying to find the correct medication to manage his seizures. Really though it was when he was a young adult that his epilepsy deteriorated significantly with between 25 to 30 seizures per year. As he says, during this time he ‘visited almost every emergency ward in Dublin and a few beyond’. As a 21-year-old, I know how overwhelming this phase of life can be. You are trying to figure out who you are, making big decisions, and finding your place in the world. I can’t even imagine the struggle of balancing this with surviving seizure after seizure.
Talking to my dad about his life growing up with his epilepsy is eye-opening. As a teenager, the biggest problem I faced was what outfit I was going to wear to my friend’s birthday or making sure I had all my homework done in time for school, but he faced much harder issues. One story which my dad has recounted many a time in our house involves the dreaded Leaving Cert maths paper, when my dad sat down to do maths paper 1. About an hour into the exam, he had a significant seizure and had to take a break from the exam. Somehow, the man that he is, he managed to recover, finish the paper and get an A. As we all know, the leaving cert is a stressful time. People all around the country still live in the fear of the dreaded exams and as a recent leaving cert student, I fully relate. Hours of study and stress leading to a set of single exams, but I cannot even imagine the panic and stress that my dad must have felt in that moment. Any moment I feel stressed out during exams or even as I go about my daily life I realise how much he has been through to fight for normality and for all his achievements. A condition that could define him has done nothing but make him stronger and more resilient. He hasn’t let it come between him and his ambitions and dreams. This man has earned an engineering degree and a master's degree. This man has travelled to countless countries, is a loving husband and an incredible dad despite his epilepsy.
A transformative turning point in his journey came when he was in his 20s, and he finally received the support he needed to understand and come to terms with his condition. The Irish epilepsy association became a new support network for him outside of the endless doctors appointments and the medical testing. As my dad tells me, for the first time in his life, he was guided through the process of accepting his chronic illness. You see, having a chronic illness like epilepsy is so much more than the scientific definition written in the countless neuroscience books but an emotional, challenging journey of acceptance. Realising that fighting a chronic illness will not make it magically disappear but only make life harder and cause you to become isolated. This vital support allowed my dad to completely shift his mindset from fighting his epilepsy with shame and anger to understanding it with pride and courage. As he says, ‘I have my right hand, my left hand, and epilepsy in between. It’s part of me, it’s who I am’ .
Simply saying his epilepsy does not define him wouldn’t be a true reflection of reality. At the end of the day, we deal with his condition daily. I guess I never really questioned it growing up, but now I realise it’s not exactly ‘normal’ to watch your dad take 18 tablets a day — every morning and every night, without fail. In fact, one of my favourite Friday night activities when I was young was helping him sort through the boxes of Keppra and Phenobarbital which were stacked high in the medicine cabinet in an imposing white pharmacy bag. We would pop them out of the blister packets rhythmically and sort them into blue tablet containers marked with the days of the week. Each morning and night the chirpy tune of his tablet alarm rings out in the living room to remind him to take those tablets. I now realise it's not normal to experience your dad having seizures on the footpath after a long walk or cycle and end up being whisked away in an ambulance. The sense of normality that I felt surrounding these moments truly shows the life my dad has built for himself. A life of acceptance and peace around a condition that could have define him.
The thing is, it’s not just my dad but millions of people across the world standing up to epilepsy and breaking the limits this chronic illness once placed on them. The perception and understanding of epilepsy have changed drastically over the years, not just from a medical standpoint but also in how society views and talks about the condition. Thousands of years ago, epilepsy was associated with evil spirits or mistaken as a mental illness. Even to this day I really believe that misconceptions surrounding epilepsy still create unwarranted social stigmas. Stigmas that have left people isolated and left out of society due to their condition, stigmas that can be as limiting as the seizures themselves. This is why sharing a real story such as my dads is so important. It reminds us that epilepsy isn’t some mysterious, contagious condition caused by mental but a chronic condition that can now be managed with the right support and care.
People always ask me why I decided to study medicine and I always laugh and say it’s the overachieving eldest daughter in me but when I truly think about it , it does stem from the urge to care for people like my dad who live day by day with chronic conditions. My dad’s seizures may come without warning, often frightening and unpredictable but what is constant is his courage and resilience. Watching him navigate life has led me to understand what it truly means to live with a chronic condition but also the definition of perseverance. I hope one day I can provide the same support and guidance to patients with chronic illnesses such as epilepsy as they too strive for normality