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.
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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.Â
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.Â
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.Â
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