Ryan was diagnosed with epilepsy when he was only two and a half years old. He shares how the Epilepsy Scotland Youth Group has helped him and how important the adventure weekend is.
What type of seizures do you have? How does it affect you?
I don’t know how I felt when I first got epilepsy, I was really young – only two and a half years old. I would have liked to have known but at that age, I was too young.
Seizures I have are focal seizures with impaired awareness where I stare and go into a dream for up to a minute and after a while, I can say something random like standing next to my dad for ages then suddenly saying hello even though I’ve been there the whole time. My mum will always ask “Are you okay?”
The other kind is tonic-clonic where my arms and legs jerk and I’m really unaware of the seizure happening. They just happen when they happen, I don’t get any warnings like other people can do- it can be frustrating.
Like in college, if I have one during the night, I’ll wake up with a sore head and feeling rubbish, My mum always checks if I’m well enough to go to college.
I always say yes, I’m a person who very rarely misses things. I’ve only missed college a few things because of my epilepsy because I like to push and challenge myself to go in every day even when I’m not feeling 100%.
Most of my seizures happen during the night…. when I was younger, I had two or three during the day.
What challenges have you faced since being diagnosed with epilepsy? Can you give an example?
It really affects my concentration if I’ve had a seizure during the night.
If I go to college the next day I can really struggle to focus, If I get told to do something, I can forget what I was told to do and that really annoys me because I need to ask loads of questions about things that I should really know what to do but it’s because of my seizure. I can’t help it.
My lecturer tells me to try writing things down on paper to remember, so I try my best to do that. I do write notes but sometimes not enough of what I’m meant to do but most of the time, I know what I’m doing.
Sometimes I just need more of a step-by-step of what needs to be done.
How has being part of the Youth Group helped you overcome these challenges?
I’ve been doing different things at college and I really love it but I find it a challenge to learn new things because It takes me more time to learn new things and I need a step-by-step walkthrough of how to do new things until I’m comfortable with it.
I need to be shown first- it is what it is but I really enjoy doing what I’m doing at college just now.
At the start, I went for an interview and the chef interviewing me heard about my epilepsy, he straight away changed the questions to a different track thinking about what could happen if I had a seizure whilst I was holding a knife or something hot.
When he went to a worst-case scenario straight away like that, it put doubts in my head, I thought “Should I really be doing this” and “Is this the right industry for me.”
But since I started at my other college, I’ve never looked back. I’m doing what I love…. cooking is what I want to do in life.
What differences have you noticed about yourself since being part of the Youth Group?
When I was younger, people would ask why my voice sounded funny, I used to say “It’s got nothing to do with you” but now that I’m older, I tell them about my epilepsy and feel happier to tell them about what epilepsy is and that I have it.
I have noticed changes, I used to muck about a lot but now I’ve been going to the group forever now and get on with everyone in the group so well.
Now I volunteer and help out with stuff and because I’ve been a member for so long, there are people in the group that look up to me.
The Purple Pandas have been great, I practically helped set it up which was really fun. When I help out at sessions I feel they look up to me too.
Right at the start of the group, there were only four or five Purple Pandas, now there are new members joining all the time and the older members have moved on to the in-person group sessions so I get to influence them there too in a good way.
How important is the adventure weekend for the Youth Group?
Getting up early in the mornings could be a challenge but it’s really important for me to challenge myself at these residentials, all of the activities we do when we’re there I never thought they would be something I would do.
Like the giant swing, I would have never thought I could do it. When I heard “Giant swing I thought, that’s crazy.” Then I saw it and thought “That really is giant…” But pushed myself to do it.
When I was younger, after leaving school, I lost a lot of contact with friends, so I mainly would stay at my nanas.
I don’t do that very often now, not just because of epilepsy though I can worry about what might happen if I had a seizure but I know If I’m going for an overnight, I obviously take medication and know what to do.
When we’re on residentials, I would never think I could share a room with others like that but I really enjoy it because we all talk and have fun.
What do you think it would mean for another young person to have that type of experience?
It’s always really nerve-wracking going away for the first time but even if they struggle with that, they can be supported to do it and once they’ve pushed themselves to do it, they’ll be so proud of themselves.
My first time away from my parents, I was nervous but now I really look forward to it because I know the fun we have when we’re away.
This Christmas, we are launching a CrowdFunder appeal to raise money for an adventure weekend for young people living with epilepsy next year! To donate, please click here.