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This article was published in August 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

Don't look down

20 Aug 2013

Joanne Mumford always tries to stay positive, even when her epilepsy proves a problem. In trying to raise money and awareness of the condition, she recently did something very brave. Joanne abseiled down a building.

Epilepsy and I have had a long relationship. I won’t kid anyone that it’s easy because it’s not, at least not for me. It’s like being stalked by something that can knock you down and change your world at any second. You try not to think about it, but it is always there.

When I’m doing things I love, I feel like I’m a regular person. Things like music or painting, or having fun with my friends and making memories that I know I’ll soon forget. I cherish these moments. Sometimes epilepsy will still creep up and knock me down, though.

Throughout life I was never the type of person to talk about my problems, especially not epilepsy. When I was at primary school it was very taboo. I was treated as if I were contagious! The condition has taken my love, who couldn’t handle what living with epilepsy means. It has taken my driving licence, my career, my independence and my freedom. It’s brought with it hospital visits and medication, disrupted family life and has meant constant supervision.

One of my New Year’s resolutions was to raise as much awareness about epilepsy as I could. I also wanted to raise some money for epilepsy research so that one day we may have a cure. This was a resolution I intended to keep. I Googled my condition and met other people with epilepsy online, which made me even more determined to do what I wanted. It was good speaking to other people that really knew how I felt.

I started by making jewellery with purple ribbons on to sell for Purple Day. Then I organised a private lantern-lighting ceremony that took place this summer. The lanterns are the Chinese style lanterns that you launch into the air with messages tied to them. Every lantern has a message written on it, ranging from words of hope to names of lost loved ones.

More recently, I had an opportunity to do something amazing, maybe even stupid. I threw caution to the wind and decided to go for it.

Over the edge

I had the chance to abseil down a building – Miller House in Maidstone! I didn’t think twice before agreeing to it. That’s probably for the best. If I had, I probably wouldn’t have signed up! Abseiling 200ft (over 60m) when you have uncontrolled epilepsy isn’t the most sensible idea – but the date was set.

Fortunately I felt okay that morning, except for a bit of a headache. I prayed I’d get through it without a seizure. The safety precautions were excellent. I was hooked up to a very strong harness, given gloves and a helmet to wear. I was then taken up 15 floors in the elevator, followed by two flights of stairs and another half dozen steps up to the roof. Then we were given safety talks, before I had to climb a ladder, walk across a partition and up another ladder… until we were finally in position. I was ready to abseil.

It was freezing cold during the abseil and took much more energy than I ever expected. People I’d spoken to before the abseil told me that the worst part was going over the top... So once I was over (which I thought was quite exciting) I thought, ‘Excellent – no problem!’

I was determined to enjoy every minute, so I managed to look around at the landscape and buildings from my high viewpoint. It was a slow and steady walk down the Maidstone building. Only a quarter of the way through the abseil I looked down thinking I must be near the ground... It was a shock to see that I was still so high up. However, it was exhilarating!

When I did reach the bottom, I was caught by my mum and surrounded by my best friends. It was very emotional. By then I had been wrapped in a blanket by the medical team as I was so cold. I have some really good friends, who love me for who I am regardless of what condition I have. That means the world to me. I am so thankful for them all.

The invisible condition

Epilepsy is so misunderstood. It’s one of those conditions that people think they know about, but they don’t. Take a pill a day and all will be ok? No – not for me or hundreds of others. We struggle every day, battling seizure after seizure. We fight for what few benefits we can get because epilepsy doesn’t fit into any particular group.

When I’m not having a seizure I can walk and talk just fine. However, on a day where I’m battling seizures, painful joints and pounding headaches I can barely get out of bed. I hate having to be on benefits but I have no choice. With how frequent my seizures are, I’m unemployable. It’s not as if I haven’t tried, only to be told ‘no’ by either a doctor or an employer for the sake of health and safety.

The worst thing about epilepsy is that it can be an invisible disability. Everyone looks at me and thinks I’m normal and healthy. Inside my brain these wrong signals are sparking off and turning my life upside down. People just don’t see my constant battle – and my battle scars. I have constant cuts and scrapes and bruises. My joints and muscles are in extreme pain as they are being contorted so much by quite violent seizures.

I hate the strain my epilepsy puts on my family, especially my mum who also prays the battle will one day end. Surgery is not an option for me at the moment. It would only cause more damage in my brain and might not even work. For now, this is the life I have been dealt and I just hope every day that I may have a seizure-free day.

Speaking openly

Talking openly about epilepsy is a new thing for me. To mark this new stage of my life, I had a tattoo earlier in the year. It is a butterfly with a purple ribbon as the body. Above it is the word ‘hope’ with glitter going through it. To me it means so much. The ribbon is for epilepsy, the butterfly represents freedom and hope, because I hope for a cure and a seizure-free life some day. The glitter is me and my friends and family – everyone will tell you that I love glitter and sparkles!

I now have a YouTube channel where I add videos about epilepsy and a blog where I post about the ups and the downs of everyday life. From being a person who was scared to talk about epilepsy, I have come out of my shell, primarily thanks to information and encouragement from Epilepsy Action.

Epilepsy Action is an amazing organisation and I want to help. To date, I have raised £720 – but I won’t stop there. It’s good to have something positive to focus on. Despite having multiple seizures almost every day, I just think of all the things I have achieved on good days. Yes I do have my down days, but who doesn’t? Life is a challenge and this is mine – I’ve just got to keep going!

Have you been inspired by Joanne’s story? Would you like to take on your own extreme fundraising challenge? Call Epilepsy Action’s fundraising events team on 0113 210 8800 to find out more.

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