Blog
I won't let it stop me
This guest blog comes from ReachOut.com member Nikki who lives in Dublin. I've never once in my life considered that I might need more than 5 hours sleep, if there was any sort of extra-curricular activity available, I would take it up; tennis, basketball, art class, drama class, dance lessons, piano lessons, recorder lessons (well, let's face it, everyone does that one at some stage). All that and I was, and still am, a big nerd, so lots of study time thrown in there to boot. I had started 5th year in school, my basketball team was doing really well in the league (it was the D league, but still), my recorder-playing years were long gone but I was still taking piano lessons, everything was going great bar a small health problem that no doctor could diagnose. Every now and again I would get mini hallucinations, like the sensation you get when you rub your eyes and see stars. It didn't bother me at all really, it would only last for 30 seconds and I only got them once or twice a month. I had only told my parents about it because I figured was worth checking out, unfortunately I was right. One day coming home from school, I started to have one of these sensations. I was sitting on a train at the time surrounded by a bunch of passengers so I didn't want to freak anyone out but this one was definitely getting worse. When I (just about) made it home and into bed, I started to have my first, full-on, arms-and-legs-flailing seizure. Well, actually I had about 9 in a row. Not one to do things by halves, I then went into a coma. Nobody knew what had caused this, or if I'd ever wake up. But I did the next day, and that's when I was diagnosed with epilepsy. I couldn't even tell you what my first reaction was, probably because I was drugged up to my eyeballs, but when they began to wear off things really started to hit home. I began to panic about what this would mean for me. All I could think about was how having epilepsy would mean no more basketball, no more dancing, I just wouldn't be able to ever lead the same life I had. Something had finally managed to stop me in my tracks. Thoughts like these raced through my mind and it just felt like someone had taken everything and turned it upside down on me. But during the week I spent in hospital I decided, with a whole lot of encouragement from my family, not to let the epilepsy stop me from doing anything I had done before. Yes it was a major event, and I would have to be on medication for the rest of my life, but what was point in having survived a coma only to come out the other side and act like you were in one again?! I never had a problem telling anyone about my epilepsy, the only reaction I ever got was one of concern for my health, and the more I talked about it the less people cared (the dramatic “I was in a COMA!!” story really wears thin after the 5th telling), and I mean that in a good way. It just became a part of everyday life; wake up, take meds, go to school, basketball practice, home, take more meds, go to bed. Nobody thought I was any different and I certainly didn't act any differently either, I was damned if epilepsy was going to stop me having fun. Looking back, being 100% open about having epilepsy is one of the best decisions I ever made. What I have learned is that people take their lead from how you deal with something yourself. If I can joke about my epilepsy and feel comfortable chatting about it, so can everybody else, and on a very practical level, if people know about my epilepsy and what to do if I have a seizure I'm safer. I'd also recommend using it as an excuse for handing in assignments late – nobody can argue with the “I was feeling a little epileptic last night, sorry” excuse, trust me. In a weird way, I live a better life with epilepsy than I would have without, it's taught me that nobody is invincible, and now that I need to take care not to get stressed or too tired, I've learned when to switch off. But most importantly it's given me the opportunity to share a story that might help someone else in the same situation, and I hope it does.
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ehon
8 months ago
Reply ReportHey nikkis, that is such a raw, honest and inspiring story! You are such a brave young woman and its incredible that you are able to take your adversity and turn it around. Most of all, what you said about, "what was point in having survived a coma only to come out the other side and act like you were in one again?" really shows the maturity, strength and an awful lot of courage in you. You're an inspiration.
Edited by moderator 8 months ago
Ianb
8 months ago
Reply ReportWow Nikki- scary at first, but your resilience and determination is really inspiring.