Market Town : Simon : Living with Epilepsy
When I began searching for people to document for this series about living with Epilepsy I could never have imagined that two of the people I’d be photographing would be neighbours. Simon (43) lives next door to Simon and Kirsty.
Simon’s resilience struck me right from our first meeting. He’s a huge fan of John Wayne and I tell him all the time “you’re the one with true grit Simon!” and his enduring on average 3 huge Grand Mal (Opens to a YouTube video) seizures per week is testament to this.
Having been diagnosed with Epilepsy as an infant Simon’s an invaluable resource of knowledge and first hand experiences and we’ll be working closely together on this project over the coming months.
“I’m 43 years old and I have Epilepsy. I’ve had Epilepsy since I was 3 years old and the doctors don’t know what caused it, no one in the family has it. I take medication; I take it in the morning and at night. Mostly I have fits in the night, in bed. Usually if I have a fit other times I have them in the chair, watching TV in the evening.”
History info for Emergency medics.
“I had a fit on the 14th Feb and my next door neighbours were round and they pressed the alarm sensor and the (Grand Mal) fit lasted 45 minutes. The ambulance came and I was right out and did not know what was happening. The ambulance came out, so the neighbours said and they had to push the sofa back to get the stretcher in and I had to have a mask on my face as I was being sick and a drip on me… then I got rushed to the hospital where I was taken to a safe place in the A&E. They were very kind to me. The next day my Dad brought me home and I was all fine. I have fits like that about two times a week… sometimes I can be like, worried and I can have 3. If I’m in bed and I’m a bit ashamed to say but my friends say “Don’t be silly Simon, it’s not your fault” but if I have a fit in bed I wet the bed and I’ve got pads on the bed to keep the sheets nice and dry. It’s embarrassing but that’s why I want to share it, to explain so people understand.”
My health book.
“Before I have a fit I have some little twinges in my body and I shake a little, quite a bit then I know I’m going to have a little fit or I shake my head a few times and I might stand up then just walk about. Then if I do have a fit and fall down I just go out of it and when I wake up again I have a headache and that tells me when I’ve had a fit. Not this year just gone but the year before that I had about three or four trips to the N&N (Hospital) and two times I stayed in for two weeks. It was that bad so I had to stay in because I had a bad cut on my head. I couldn’t walk in a straight line. Y’know when you’re drunk and you can’t walk in a straight line? Well, I didn’t have no alcohol but I just couldn’t walk in a straight line or get my balance and that’s why they had to keep me in for a couple of weeks so they could get my balance… and I lost my breath. It took the two weeks for everything to come back to normal.”
“One day in the hospital they tried to get me walking and they had me use a stick, that did not work, then a crutch, that did not work, lastly a zimmer frame. They sent me home with that. I thought, my mates are going to laugh at me… then I thought, “Sod them,” if they want to make fun I’ll say back to them “If you were in my shoes what would you do?… if you had epilepsy… would you like me to say that to you?… no!… so be quiet!” Then I got better just after that… after those two weeks.”
‘May need help when out if a seizure occurs. Following a seizure my legs can be very weak and I may need help to walk.’ Notes from My health book.
“At school bullies would say things about the Epilepsy like Epileptics are spastics, which I did not like… my mates told them to stop. Having my mates made it easier to go to school. I think if I had not had friends then it would have made me have more fits, as I worried about being bullied, stress causes it, brings them on. Stress and worry.”
‘I would like to be buried in the event of my death.’ Notes from my health book.
“I had a fit just before Christmas; I fell out of bed and had a carpet burn, all of the side of my face, forehead all a red mark. The last fit I had in my living room and accidently fell on a pint glass and I cut all my head and on the right hand side of my cheek there was blood and a cut. I come out in rashes on my arms and red marks on my face. I’ve broken my nose several times whilst having fits.”
“‘No assistance needed with eating and drinking. Risk of choking if seizure occurs during a meal.’ Notes from my health book.”
Seizure sensors beneath mattress.
“I’m living on my own now and I have gadgets like an alarm sensor, fall detector. If I don’t respond in 10 minutes it will call the ambulance. I’ve an alarm that reminds me to put my fall sensor on if I go out and I’ve got a support worker that comes every night to make sure I’m OK, help me cooking and make sure I’m OK.”
“Work, if I do too much can bring on a fit. It was hard to find work because not all jobs take Epileptics. Being Epileptic you have to try to find a job that isn’t to do with machinery and do something like work without working on a line, factory line as you might have a fit and damage yourself. It narrows the job options down. Now I work at a care home helping the older people that can’t feed themselves, so I feed them.”