Great Ormond Street: My mum’s going to watch from behind a cushion!

Jack Copley’s epilepsy started when he had a stroke as a newborn baby. His fits have increased severely since he hit puberty, and can’t be controlled by medication. Jack, now 17, was making his mind up about whether to have brain surgery to cure his epilepsy, with potential serious side effects, in BBC Two's Great Ormond Street.

I do think that people have some strange ideas about epilepsy. They seem to panic when they see someone having a seizure and assume you have to immediately call an ambulance. I just thought that maybe the programme would help to show that you can have seizures but still try to lead a normal life - people just need to make sure you cannot harm yourself and give you time and space to recover.

I enjoyed it when the Great Ormond Street cameras came to my karate class and did some filming. But it made my Sensei even more determined that we would do every move correctly so we were all shattered after that session!

My mum kept leaving the room when she saw a bit of the programme with her in it - she didn't like seeing and hearing herself. It was hilarious! But also it was really hard being reminded of the tests and the seizure and the decision whether to have surgery. She'll watch the programme from behind a cushion like she watches any medical programme!

It was definitely weird to see myself having a seizure. Almost everyone I know has seen me have one but of course I never have until I saw the one they filmed in the programme. It was strange because I don't remember the seizure or the time immediately before it or after it, even though I can see myself talking.

The day after the seizure you see in the film I was shattered. I had a really bad headache, felt sick, I just felt really dreadful and wanted to sleep. I don't recall the film crew visiting - but mum said they did because they had heard I had had the seizure and were worried about me which was nice. 

I loved the filming: I like chatting and that was really all they asked me to do! They never insisted on anything. The camera and sound equipment was really interesting and I got to see how it all came apart and what all the different bits did, that was great.

I’ve had to grow up quicker than friends my age. I have to be sure to take medication or I could be really ill. Also, I have to tell 'new' people that I have epilepsy in case I have a seizure when I am with them, so that they know what to do and don't panic. It means that I do have to try to be a bit more responsible: plan, take water, don't overheat, that sort of thing.



It is frustrating too, because I can't learn to drive which others my age are doing. I love watching Formula 1 and I would love to learn to drive and physically I could learn in an adapted car, but the uncontrolled epilepsy rules that out.

I was really gladit was me deciding whether to have surgery to remove parts of my brain linked to fits. I don't think that someone else should decide if you have surgery like that, even if you're still a teenager, because what could happen to you is really serious. But I didn't feel that it was totally down to me or that I had to decide all on my own, because I talked a lot with my mum and dad and my granddad especially and asked them what they thought. Actually, they thought the same as me which was really good and made the decision easier to make in the end.

Not doing karate would really, really upset me. What made me decide against the surgery was mainly the side effects: the doctors said I would definitely lose side vision and be even weaker down my right side, and that would mean that I would struggle continuing with my karate.

I definitely made the right choice. I am sad that I still have lots of seizures but we do know how to cope with them. I don't think I would have coped with the side effects from the operation and I love my karate and going to college too.

My top five moments this year have been:



1. Achieving my black belt in karate in April

2. Going to see Russell Howard Live

3. Seeing the poppies at the Tower of London while down at Great Ormond Street Hospital for some tests

4. Being voted student of the year at the end of my first year at college

5. Getting a part time job at Tesco

(And 5b. - I can’t wait to see myself on TV!)

Great Ormond Street continues on Tuesday, 28 July at 9pm on BBC Two. Each episode will be available in BBC iPlayer for 30 days after broadcast on TV.

Comments made by writers on the BBC TV blog are their own opinions and not necessarily those of the BBC.