Speakers Corner

I am afraid of birds

04 February 2015
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by Kate Muller, Co Kerry

My name is Kate Muller.
I am very ordinary.
I am 57 years old (oops !)
I live in Tralee.
I am afraid of birds.
I love taking photographs.
I am happily married for 37 years and we have a wonderful son.
I have epilepsy.

The list above is random in so far as I live with epilepsy, but it does not define me (and the list could be a lot longer!)

I was diagnosed when I was 10 years old and the biggest blow to me at that time was I didn't get the same fuss my brother had received when he had been in hospital. He had an operation, so he received cards, gifts, a watch (unheard of for a 7 year old back then) and of course everybody knew about it. I expected the same fuss, but instead I was quietly trotted in and out to the neurologist.

My poor parents (both of them wonderful under the bewildering circumstances) were distraught. They were the ones who witnessed the seizures. I just saw the whole thing through the eyes of a 10year old. I had to take medication a couple of times a day and had to have some very boring tests that involved a lot of waiting around and that was pretty much that. It was like a ghost. 

I never really felt that I had a disability, but I always felt that I wasn't quite the same as my friends. I did however have the same childhood as all the others on our road and bless my parents; they did not wrap me up in cotton wool. I climbed trees; played rugby (it was nearly all boys on our road!); went horse riding; cycled everywhere and generally had a great time. I had regular injuries, but maybe I'd have had them anyway! I got a summer job when I was 14 years old and cycled to work every morning. It was more important to focus on what I COULD do, rather than what I couldn't!

What I found most difficult was when I was about 15 or 16, and telling my friends. As little as I knew about epilepsy back then, they knew and understood even less, so it was quite difficult.

It was always a very difficult conversation for me, exposing the part of me that made me different to everybody else. I suppose to this day there are some people who will find epilepsy as a 'strange' condition - all the more reason to talk about it and give it an airing.

I have never found that it got in the way of a relationship. But it is very important for people to know because I don't know when I am going to have a seizure. But it doesn't have to be part of every conversation!

I wasn't broken hearted with my diagnosis at 10 years of age, but my parents may have been on my behalf. It wasn't a sentence and I have been able to do lots of wonderful things in my life. I have always considered my epilepsy more of a nuisance than anything else. It has determined things like where I live, as I do not drive. So while other people might be looking at certain features of a property, I will be checking out the nearest bus stop! 

I am also photosensitive, so things like where I sit on a train or bus or restaurant are important, as the light coming through the window can bother the life out of me. Nightclubs are off limits! 

But overall, it has not hindered my lifestyle dramatically - I have been able to work, socialise and do most of the things I have wanted to do. There are some challenging moments and fear can take over. These moments are not very frequent and certainly not an everyday occurrence. Some days you just know that you are more vulnerable than others and that can be petrifying. These days just require a little extra courage.

In general I have a very ordinary life. I stopped working in 2012 as my medication was changed and there are some side effects. But that is not to say I don't have a full and productive life. I don't think about epilepsy all the time: it is like a shadow that is there, mainly unnoticed. I will be aware of it on a bad day, and otherwise I just take my medication and make sure I get enough sleep.

I have great support from Matt, who understood it from the beginning - thank you Matt! I've lived with epilepsy for 47 years now, so it has become a part of me.... but only a small part of me.

I'm just Kate, who's afraid of birds!

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