IN May, 2017, after my second seizure, I was diagnosed as an epileptic. Mere weeks before my Leaving Cert. This sent my life, and my mind, into a tailspin, which I’ll never be able to stop, only control as best I can.
Fearing seizures is the biggest occupier of my time. Any detection of uneasiness leads to inner panic. I find myself analysing circumstances, calculating the damage, both physical and emotional, that would follow a seizure. Would I hit my head? Who would see it, and how would our relationship be impacted? Would strangers record it for the benefit of social media?
The first thing I do in the morning is analyse my tongue. If it’s bitten, then there’s a strong possibility that I had a seizure in my sleep. Even if it is perfect, this is a disheartening way to start the day.
My interactions with food have vastly changed. Like many Irish teenagers, chicken rolls made up a large portion of my diet. That was until my first seizure, where I happened to be eating one. Ever since, I’ve been reluctant to touch rolls, and similar foods, as they come with a topping of epilepsy and trigger scaring flashbacks.
Epilepsy also prevents me from drinking alcohol. This inability is a hindrance to my social life, as Ireland’s famous drinking culture is so dominant. Before, I had to lie, creating tales of alcoholic relatives who put me off the habit. These days, when I’m honest, people’s unsure or overly sympathetic reactions always leave me feeling isolated, and eyeing the exit.
Outside of immediate family, I didn’t tell anyone about my condition, and kept the extent of my mental struggles to myself. When hearing my name, I didn’t want people to associate an image of me on the floor, viciously shaking. A burden on everyone around him. I couldn’t bare the thought of being defined by the stereotype of epilepsy.
Shame locked me in a closest of secrecy. Many of the relationships in my life came close to ruins. Trust and intimacy issues riddled my existence. I kept every interaction in my life to a light level. If anyone tried to learn the reason behind my shallowness, I’d completely shut them out of my life.
Then, late at night, when I was certain of solidarity, the held back tears would fall down my cheeks. Powerless, I’d just exist, and ponder the cruelty of life.
Despite all of this, I still had a Leaving Cert to complete. I struggled through it, praying not that the right question would come up, but that epilepsy wouldn’t come calling in the most untimely hour. This distraction led to me obtaining disappointing results the following August.
When it came to my graduation and debs, I couldn’t shake enough of the anxiety, or muster the optimism required to attend either. Everyone was starting new, exciting lives, whereas I, with this unpredictable condition, felt like the best years were already behind me.
After a summer of medicated misery, I stumbled into a journalism course, unprepared to chase my dream career. In lectures, my focus was consumed by headaches. Along with the the fact that education and life seemed pointless, when seizures had the potential to kill me.
I abandoned my dream, instead opting for a job at my local cinema. As my shaky hands spilled drinks and dropped popcorn, a reflection forced itself upon me. I thought of my pre- epileptic self. He was so innocent, with nothing holding him back. Ignorant of the condition that now owned him.
Emotionally overwhelmed, I lasted only two days in my first job. From there, I spent several months doing nothing, besides pitying myself and mourning lost potential. This spell of lostness climaxed on the week of my year anniversary as an epileptic.
To mark the occasion, and in search of some emotional release, I wrote a long, therapeutic diary entry. Here, I realised that I should be grateful, not bitter. My epilepsy is controllable.
Others aren’t so lucky. I would be disrespecting them if I didn’t find my potential, and take advantage of the life that’s still possible.
I kicked down the closet door and shared my epileptic story. Thrillingly, shame wasn’t the dominant feeling, rather the true extent of my strength. I was filled with a determination to return to college, and achieve the dreams epilepsy assured me were impossible. My condition is inescapable, but struggling within its grip is a fulfilling process.
Besides rattling our bones, epilepsy strives to put tape over our mouths. Regardless of condition or struggle, I plead with you to scream your feelings for everyone to hear. Believe me, I know that sharing is scary, and doing so is far from some magic dust that will fix everything, but it is the crucial first step to being okay.
To continue following my epileptic journey, check out my blog, Kevinskick.
Epilepsy Ireland is committed to working for and to meeting the needs of everyone with epilepsy in Ireland and their families and carers. See www.epilepsy.ie