My Health Experience: ‘It’s all about the ability – not the disability’

Irish athlete and runner Michael McKillopp has a mild form of cerebral palsy and was diagnosed with epilepsy as a teenager. He won gold in the 2008 and 2012 Paralympics, and was recognised as the male athlete who best exemplified the spirit of the Paralympics

 Michael McKillopp competing at the IPC European Championships.

Michael McKillopp competing at the IPC European Championships.

 

I was 14 when I was diagnosed with epilepsy. We had been on a family holiday in Wales and it was the last night before we got the boat home early the next morning. I was put to bed, and all of a sudden my parents heard a big thud in the middle of the night.

They came running in and I was on the ground, fitting. At that time my parents didn’t have a clue about epilepsy, or whether I had epilepsy.

I was rushed to hospital and, as far as I am aware, I had a second seizure there. Then I had a brain scan and the doctors noticed I had a cyst growing on the left side of my brain where my cerebral palsy had caused some brain damage. The cyst had grown where the brain cells had died.

I was diagnosed with epilepsy. It is not typical epilepsy: tiredness and lack of sleep seem to be the triggers for me. I have fits only during my sleep, not during the day. It is a bit more risky.

I have spent a lot of years worrying about epilepsy and [worrying about] going to sleep and never knowing whether I am going to have a fit or going to wake up. I have heard very bad stories of people I know, and their sons or friends who have died having fits, so it is not a nice disability to have.

Free from seizures

I have been free of seizures for three and a half years now; with luck, with the medication I will be seizure-free for the rest of my life.

Nobody knows when a seizure is going to happen – only the man up above knows when it is going to happen – so I guess you have to live your life the way you want to live it rather than allowing your life to be [governed] by epilepsy.

Being an elite and full-time athlete I have to train really, really hard, and that is what I do, day in and day out.

My training has to be slightly tailored and my dad, who is also my coach, would notice if I don’t look right.

He would notice small triggers, but the key thing I need to keep on top of is getting enough sleep, taking my medication and being sensible.

When I was growing up, my friends were drinking alcohol, and I couldn’t and still don’t because I am on medication, so I didn’t socialise the way my friends do.

But my friends understood it and they respected it and made sure I was still involved.

I would recommend to teenagers with epilepsy that they realise where their boundaries are and know whether they are overstepping them. I think they have to be a little more mature than the normal teenager has to be because they have to be aware that something can happen.

I would also say to make your friends aware of your disability; don’t hide that you have epilepsy.

I knew better

That really made me realise that epilepsy is a dangerous thing to have and you have to be aware of it and respect it; and if you respect it, it will respect you. It is nothing to be ashamed of.

My parents, Paddy and Catherine, were both athletes and my dad represented Ireland, so I was brought up in a sporting family with my older sisters, Sarah (26), Claire (28) and Ciara (18).

I fell in love with running and then realised I had a talent for it. When I was 15 I competed in my first Paralympics and won my first world title at the age of 16. I went to the 2008 Olympics in Beijing and won gold as a 19-year-old.

I went on to win multiple world titles and European titles and, in 2012, at the Paralympic games I went on to win two gold medals and break a world record.

People don’t really get that the Paralympic athletes are training as hard as or harder than some of the able-bodied athletes who go to compete in the Olympic stadium. I was there on the same track and same venue competing in front of 80,000 people – just like Usain Bolt did.

But you don’t hear of the Paralympic athletes; I would like to think that by the time of [the 2016 Olympics in] Rio, a lot more people will be aware of it.

The way I look at it is that it is about the ability, not the disability. It is the same with the epilepsy; it doesn’t matter, because you can get on with your life, and do whatever you want. Don’t allow the epilepsy to be an excuse.

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