How I welcomed Epilepsy into my life

By: Elisa Rota

Diagnosed when I was 12 years old, this is how I have welcomed Epilepsy into my life.

Epilepsy is part of me as much as my hair, my ears and my feet. Being epileptic means having to pay attention to both big and small life aspects; daily I have to be careful with lights, I can’t spend too much time on my phone or tablet, and I have to double-check my schedule for any potential side effects my daily activities can cause. 

I can't imagine separating my person from my epilepsy, we are all-in-one, and my friends know this very well. I've been lucky enough to meet people that do not judge me because of my disability, but I would lie if I didn’t say that sometimes I’d like them to forget it. After I tell people about my diagnosis, they get worried and keep asking me if I’m fine. This can get tiresome. Even when I don’t find it annoying, I am sorry for their concern and keep wondering why they can’t just trust me when I say there’s nothing wrong. 

The medicines I take for my epilepsy have changed my life. Physically, my body changed. I started losing my hair and had a lot of swelling, as well as pronounced stretch marks. Mentally, I started having some memory loss. Memory has always been one of my strengths and struggling with it feels terrible; if I had to pick which side effect debilitates me the most I would say this is the one. The medicine also changed me emotionally; now I have a hard time controlling myself even though I’ve always been good at this. I still manage to be in control, but it’s definitely more difficult.

I had my first seizure when I was 12, in the middle of a dodgeball game at school. I never thought I would spend my first week of school in the hospital. At the time, I had no idea what epilepsy was so when I woke up and they told me I passed out the first thought I had was “how is it possible? Fainting is a bad thing, isn’t it?”. Luckily, my doctors were able to diagnose my epilepsy, so I had the explanations I needed in a short time.

I never really had bad feelings about my condition, I simply adapted to the new lifestyle and didn’t really think about it, if it wasn’t necessary. Above all, I believe my silver lining is my personality. I’ve never let anything put me down so when I was diagnosed I decided to not fight it back but to welcome it into my life. Being optimistic and taking the best from every experience has been a life-saver to me and I like to help others look at the bright side as much as I can.

Version in Italian

L’epilessia è una parte di me, tanto quanto lo sono i miei capelli e i miei piedi. Essere epilettica significa dover prestare attenzione a molti aspetti della vita, a partire dalle luci e gli schermi che uso quotidianamente, fino a possibili “effetti collaterali” di attività particolari. Non riesco a immaginare di separare l’epilessia da quello che sono, siamo un tutt’uno e le persone a me care lo sanno bene. Ho avuto la fortuna di incontrare persone che non mi hanno giudicata per la mia condizione, tuttavia mentirei se non dicessi che a volte vorrei lo dimenticassero. Quando scoprono che sono epilettica si preoccupano per ogni piccola cosa, e anche se la loro insistenza non mi dà fastidio, mi domando perché non possano credermi quando dico che sto bene. La conseguenza è che mi dispiaccio per loro e, complici le medicine che alterano le emozioni, rischio di perdere qualche lacrima. Loro si preoccupano di più e io sono ancora più dispiaciuta, una spirale senza fine.

Ciò che mi aiuta molto è il mio carattere, sono ottimista e non mi faccio abbattere dagli ostacoli, quindi non ho mai vissuto male la mia epilessia. Una fortuna per cui sarò sempre grata, per questo motivo cerco sempre di far vedere e vivere anche agli altri il lato luminoso delle cose.