Fiazah is 25, lives in Rochdale and is studying for a degree in psychology with counselling at Open University. She attends group meetings with Young Epilepsy and finds the support really helpful.
We asked Fiazah to imagine a day in her future that she wants to happen. She chose her graduation day.
‘I’m proud of the person that I am’Fiazah
My dream day is …
The day I graduate.
I wake up in …
My bedroom and I’m full of excitement. It’s early, around 8am. I’ll be thinking about if everyone’s getting ready and what they’re doing. I’ll want my mum, dad, my grandma and grandad to be there. My normal routine is to wake up and ring my grandparents to see if they’re ok, so that would be the first thing I do. But I lost my granddad last year to Covid. It’s been really hard.
To get myself ready for the big day I …
Wear a nice dress with heels. It will be hung up on my wardrobe and I would have got my dad to iron it because he loves ironing! I’ll be excited that I’m finally graduating, that I did it, that I’m not stupid after all and that I’ve made it somewhere.
The important thing I bring with me to my big day is …
My mum’s ring, I’ve always worn it. My dad gave it to my mum on an anniversary and I borrowed it off my mum. It’s sentimental and it means a lot to me. I’d also bring lipstick, a power bank charger, phone and perfume.
The building where I’ll graduate is …
I’d like it to be Manchester Town Hall. Everyone’s taking loads of pictures with their families in their gowns and hats. My mum’s constantly checking up on me and down my ear to see if I’m ok as if I get panicky I’ll probably have a seizure. I can picture my grandad’s smile on his face - he had this smile that would light up the whole room.
The moment they’re about to call me onto the stage …
I’ll be behind the curtain praying ‘don’t trip, don’t trip’. I can hear my family chanting my name. I can hear my brother whistling, he’d be the loudest. He’s 30, five years older than me. There will be pictures, filming. I’d worry I’ll probably have a seizure. I have tonic clonic seizures and I know when one’s about to come on as I get a little aura and a pain in my tummy. It’s like the pain’s building up inside me and it travels all the way up to my brain. Sometimes I feel it in my throat, a bit like when you’re very hungry and you’ve not eaten. It’s really weird. I also have a habit when half my body is going into a seizure, my other half is holding my phone and I start messaging my sister random characters and so she knows straight away I’m having a seizure. Or I’ll ring her and she’ll just know by my voice. I have about 5 to 6 seizures every day. It’s really tiring and draining.
When they hand me my certificate I’ll be thinking about …
My studies and how hard it’s been with my epilepsy. I got diagnosed on my 18th birthday. I was supposed to fly to Saudi Arabia for pilgrimage. I had a brain operation at 21 and learned a lot from speaking to everyone on the ward - the way you speak to someone, your tone, having a joke, banter, shows that you care. I’ve had to talk to myself a lot and be positive and say to myself you’re going to get through all this and you can do this.
To celebrate graduating I …
Have a big family gathering with loads of food - roast, curry, brown rice. There’s also this yoghurt that my mum makes with salad in it. I can smell it right now! When I went to the hospital, all I wanted was brown rice, but my grandma’s brown rice, not my mum’s - my mum says ‘I got taught by the best’. My family will do a surprise party, which I’d already know about. I’d have to put a pretend shocked face on as they do balloons and party poppers and say surprise!
My best memory of the day is …
Spending time with my family. Since I got ill, it’s made me appreciate the people in my life a lot more. My grandad meant the world to me, I miss him so much. I remember the last conversation I had with him. We were talking about Covid too.
The day means so much to me because …
I’m proud of the person that I am. In Islam, they say that being ill is a gift from god, as you see a lot more and it makes you appreciate what you’ve got. I don’t think I would have achieved my graduation day if I didn’t have epilepsy as I wasn’t well behaved in school. It’s a lot to take on, but it’s opened my eyes up and made me realise what I want to do with myself and help people who have been through what I’ve been through. I’d say to any young person with epilepsy don’t stress out, you’ve got your whole life ahead of you. I know it’s hard, but you can do it.
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