Small Town Inertia

Documentary & Portraits by J A Mortram

Market Town : Simon : Living with Epilepsy : Plans & sufferance

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Plans are so hard to make when you live in a constant state of fear, always at the mercy of a seizure when least expected.

The last weeks had brought a great positive change for Simon. The dosage of his medication had been altered. A result of this was that his seizure rate had dropped dramatically. Freed from the confines of having every action he undertook being invaded by an unforeseen attack his confidence was soaring.

“I’ve started going to the gym on a Sunday last week. I get bored staying at home just watching TV. So I thought I’d go to the gym and do something interesting and keep fit.”

“They know my Mum, Dad and sister so I’m alright there. I had to fill in a form and it said “Do you have epilepsy?.” so I said “Yes.” All I have to take in is my medication. After I gave it my first try they said “You’re doing ever so well, keep it up Simon.” I’m really hoping it’s going to help improve my Epilepsy, energy and my enjoyment.”

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Simon making a coffee at home after his morning shift as a Carer for the elderly. A job he loves.

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Relaxing watching a DVD.

“My fits have got much better. I am not having that many fits anymore. Mum and Dad reckon my medication is much better now. For me, I think its much better as it’s controlling me. I feel much happier and controlled because I can go out without thinking I’m going to have any more fits. When I get back I can relax, go to sleep and not worry that I am going to have any fits. I’ve not had any Paramedics out for quite a while.”

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“I went to the gym again. I went on the bicycle and was really enjoying myself on that. I did 15 minutes then I went on the treadmill to do another 15 minutes.”

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All smiles on the bicycle.

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Simon beginning his 15 minutes on the treadmill.

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“I can’t remember anything when the fit comes on. I can only remember a little about the afterwards. Like, if I get damaged and have a headache they are what tell me I’ve had a seizure.”

When we began this project we had talked about what we should do should the event of a seizure ever take place whilst shooting. Together we concluded that to make a story about life, living and dealing with epilepsy we would not be reflecting the truth were it not to encompass seizures and the reality of their effects upon Simon.

However, due to his new medication dosage and the past weeks being seizure free neither of us expected one to take place so suddenly, so dramatically on this day of shooting. The above two frames are just a split second apart. Simon was upon the treadmill and just beginning his 15 minute walk. The time it took for the shutter to raise and fall he was down and down hard. Within the blink of an eye Simon was taken from enjoying his walk, enjoying the activity, enjoying his day. There were no signs nor signal of any impending seizure nor initially any sign of injury.

There are numerous types of epileptic seizure. Simon most commonly suffers from a Generalised seizure, in Simon’s case specifically Atonic seizures. (Also known as drop attacks or akinetic seizures.) Generalised seizures involve epileptic activity in both hemispheres (halves) of the brain. During an Atonic seizure your body usually falls forward and the dangers of banging your head on furniture or other hard objects are greatly heightened as a result.

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“When I came round I thought I’d had a seizure in Town but when I asked someone they said I was in the gym. I thought I was up town laying on the pavement.”

A spilt second later he regained consciousness and the extent of the injury he had sustained whilst falling became apparent. He’d suffered a deep laceration to his forehead and his cheekbone. Both were swelling up and bleeding profusely.

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“I don’t know when a fit is coming on and I cut my head and the side of my face. They stopped the treadmill and I was ever so damaged. They put plasters and sorted me all out.”

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At home the morning after.

“My Mum and Dad brought me home from the gym. They were ever so worried. They keep phoning up to see if I am alright. They will keep coming round to see how my face is. Today it is ever so sore and I couldn’t go into work today. Last night in bed it was ever so sore. When I tried to turn over on my side in bed I couldn’t as it was so sore.”

“I just thought I’ll try to keep fit. Do something that I’ve never done before. I’m going to keep going back. See what it’s like. I’ll go on the treadmill again. It hasn’t put me off going on the treadmill.”

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“There are some people out there that are really stupid with all they say about Epileptics. I’ve had people put dog mess on my windows, banging on my windows and walls at night. I had my blinds down and I just took no notice. If it happens again I’ll call 101 (Non emergency Police). I think the people that do that sort of thing are really stupid, trying to frighten people to get them nervous and get them worried so they have another fit.”

“I keep on going. I keep on saying to myself I want to do everything I can and if something bad happens and I want to do it… I’ll keep on doing it. I keep on going.”

If you require any further information regarding epilepsy Epilepsy Action is a great online resource.

Advice on how you should help if you’re witness to a person having an epileptic seizure.

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8 Comments

  • Anonymous

    July 14, 2012 at 3:38 pm → Reply

    Great photo essay Jim! … I do hope Simon’s new medication is helping to reduce the number of seizures he suffers… at least so he can approach life with a dose more certainty.

  • javi

    September 15, 2012 at 4:23 pm → Reply

    Simon is brave! Great decision to encompass all that is involved with epilepsy, even the fits, seizures.. that’s how it should be. That’s the real life. I can’t believe there are people who try to make Simon and others suffer from seizures…they are not just stupid, they are evil, wicked and mean.

  • Eileen Bunn

    May 15, 2013 at 2:35 pm → Reply

    Some wonderful photographs and words – really quite moving. I am currently doing a similar thing about my sister Pauline who has epilepsy. It is very difficult at times because of the personal connection so the work goes at a fairly slow pace and their are a lot of tears along the way!

    It was interesting to see your photographs recording the affects of a seizure. I can clearly understand your reasons and also grateful to Simon for allowing the viewer into this personal part of his life. My family did not want me to photograph or depict Pauline visually when experiencing a seizure so I am looking at other ways of showing her relationship with this very difficult condition.

  • JA Mortram

    May 15, 2013 at 3:18 pm → Reply

    Thank you Eileen. Really interested and excited to learn of your project. I understand your situation very much as initially I had wanted to document my Mothers experience with epilepsy but she was wary and above all things respecting the wishes of whom you document comes first.

    From the outset of documenting Simon we spoke of the ‘What to do during a seizure’ situation and he was adamant that were he ever to have a seizure whilst I was present that I should document it, we both had the opinion that as it’s such an unreported event that to document it, share it is to inform.

    Good luck, looking forwards to seeing your project and best wishes to both your sister and you.

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Market Town : Simon : Living with Epilepsy : Plans & sufferance