Young Epilepsy
Lucia Hornsby

Lucia Hornsby

88%

Funded

  • £1,000 Target
  • £879 Raised
  • 26 Donors
  • My Story

Hi, I'm Lucia, I'm 22 and on the 4th August I am going to skydive from 10,000ft, I am jumping for Young Epilepsy because they do so much work with children up to 25, who suffer from epilepsy. When I think about my experience and how hard I have found it, it is genuinely nothing compared to others, some people have seizures every day, their lives are genuinely constrained by this disorder in a way I could never imagine. This charity helps them, supports them, offers education, researches this disorder, it's just great, check it out! And if you in any way want to support the hilarity that will be me falling from the sky, and this incredible cause. Then please do, I would be so so SO grateful, even for the smallest donation. I am finally in a place where my seizures don't stand in my way, I want to help everyone get to that place, and this charity is trying. And if you want to know a bit about my journey with epilepsy, then please read what I've written below, it's not the easiest thing to open up about, but it is important.

I was diagnosed with epilepsy when I was around 14/15. The diagnosis took around a year and a half, which for me meant three seizures whilst I waited to hear what was wrong. That wasn't really anyone's fault, it's difficult to diagnose, they basically try to induce a seizure, so they can monitor your brain activity, and I was happy with not having a diagnosis because epilepsy felt a lot scarier than 'Oh I had a few random seizures when I was young'. But, not random, epilepsy, epilepsy induced by stress and sleep deprivation so... why not a skydive?!

Kidding! But I think anyone who knows me fairly well knows that I try to look at the seizures quite light-heartedly, and some of you won't even know I have them, so, it's in no way the biggest part of my life. I don't like to focus on the challenges it brings up, but for this, I will. After I was diagnosed, when I was 16 they told me about the effect epilepsy can have on a pregnancy, that it makes miscarriages and birth defects more likely, that they don't know how most medications interact with pregnancies, there was only one they were consistently confident in, and that was the one that didn't work for me! So, I was pretty upset, and I'm not sure if I was more upset by what I was hearing or the fact I was 16 and having to think about that stuff, I wasn't ready to consider how difficult that would be. Then come all the stories people tell you, 'oh yeah I had a friend with epilepsy, they died'....cool, thanks! (kidding again)

I think the scariest part isn't the stuff that can happen, the injuries you can incur, (I prove time and time again, it's hard to collapse gracefully, as can be seen in the photo), it's the stuff you let it stop you from doing. This was hugely true for me when I was younger, it terrified me, and my family, I remember there was a time if I knocked a shampoo bottle over in the bath someone would be bolting up the stairs to check on me. And it was so frustrating because I knew it was completely fair, that noise could have been a seizure, how would they have known. And when you go to do something, people turn to you and ask, oh can you do that if you're epileptic? And it's fine that people check in, it just means they care, if they see an epilepsy warning they want to make sure you're fine, the really rubbish bit is when you start to ask it of yourself. Can I do that? Am I safe? When I started to ask that of myself, I went through a really dark patch. So, if any of my old friends clicked on this and wondered, why did Lucia drop out of college, here it is. I had a petit mal seizure in one of my exams, I basically had a mental blackout without the falling over part, and afterwards, I couldn't focus, recall my revision, and I had to miss the exam. That in itself wasn't disastrous, but it was a domino effect, every time someone had asked me if I could do something hit me, and normally I would just think, “of course I can!” but then I just kept thinking “no, I can’t.”. I couldn't do it, I couldn't face the exam hall again, I was too scared. What if I had another one, what if I had a full seizure. what if everyone saw. Education had been the one thing I was comfortably good at, and suddenly I couldn't breathe when I thought about going to college, panic attacks became a daily thing, my attendance was abysmal. The college counsellor was amazing, and she helped me accept that anxiety and depression were okay, and putting my health and safety first were okay, walking away from college was the hardest thing I ever did, and I was so ashamed. I pushed all my friends away, I never talked about it, how do you admit to people you’re so cripplingly scared of college you actually dropped out? I wasn’t the girl my friends knew anymore, and I am sad to say, I lost so many of them during that time. Not because of them, I could have reached out, I could have told people, but I didn’t know how to say it. To me it felt like epilepsy had beaten me, the fear of seizing again had a hold on me, for the first time since my first seizure and I didn't know how to break away from that.

But anyone who knows me now, knows I am weeks away from graduating Durham! So, I did find a way to break that hold. It took a lot of time, mainly to believe in myself again. When I found my path to Durham I remember saying every year, it doesn't mean I'll graduate guys, something could still go wrong. And then at the end of Second Year, I was like...guys I might graduate! Hell, this year I even live alone #mental #nahjustaloner. Unfortunately, I have had seizures still, it's not them stopping that has given me the confidence, it is just my determination to not let the fear of what might happen, keep me from trying. Epilepsy is something I have, it’s one small factor in my life, it is not my identity. So: what I want to do, is conquer one of my biggest fears! Which is not so much heights, but making the conscious decision to fall from a plane, which seems to me to defy every human instinct going, but here we are! I am going to do it because I can.

 

Young Epilepsy

Young Epilepsy

Young Epilepsy is the national charity supporting children and young people aged 25 and under with epilepsy and associated conditions, as well as their families. We exist to improve the lives of children and young people with the condition to enable them to fulfill their potential and ensure they have ... Read More

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