Shattering the Stigma

Tomorrow is European Epilepsy Day. Never before have I had a direct connection with a day marking something of significance. Sure on cancer support days I think of my mother, on International Aids day of friends taken by the disease, Armistice Day my grandfather who fought in the First World War and Parkinson’s Day of a good friend busy kicking that disease’s ass! But epilepsy has come into my family home, tried it’s utmost to kick the living daylights out of my beautiful boy on a regular basis and really taken over our lives. So many other things that should be occupying my attention, even keeping me awake at night don’t matter a fig right now. Got no money in my pocket? Couldn’t care less. Did you know the economy is going down the toilet? Ditto. Haven’t been for a couple pints in well over a year and I’m not the least bit put out. Even when the Ireland France match was cancelled last night I wasn’t that disappointed, I was much more concerned that we could go another day without paying the hospital a visit.

The theme of this year’s day is Shattering the Stigma, a good one and something that I’ve been trying to address for the last few years. Epilepsy affects about 30,000 people in Ireland alone and is nothing to be ashamed of. Like all other long term afflictions all services associated with it are chronically under-funded including informing the public. There are many different forms of epilepsy, most controlled by medication while with some people like Freddie it’s really difficult to find the right medicine. Others need surgery to correct a malfunctioning brain. Yes it can seriously curtail your life at times but when you have it under control it doesn’t need to. You can drive, work, operate machinery and even run marathons. Once you know your limits, know your triggers and look after yourself then it becomes just another part of you. Nothing to hide, people don’t have to constantly expect you to keel over or hold your tongue down with a fork if you do. This sort of basic education is still lacking among the general public but hopefully days like tomorrow’s one will help lift some of the veil of secrecy surrounding the condition. Certainly I’m learning all the time and anyone who asks is always given a good rundown on Fred’s condition! There’s no quick fix for epilepsy, you are dealing with the central nervous system of which so little is known and hopefully few people will have to live through what we have over the last few years, but it is something that shouldn’t be hidden behind closed doors either.

The week just gone was a typical example of what living with epilepsy can be like. Freddie came home from hospital Sunday morning but by Monday evening we were heading back over to A&E again. Ruby and I were just in the door, a typical Monday evening tired and hungry. Fred was in great form teasing me in the kitchen and went in with Ruby to watch TV whilst waiting for dinner to be ready. After a couple of minutes that certain tone of shouting we all have  was coming from the front room, Ruby looking for help. He’d gone over in mid conversation and Ruby was holding him against her where he fell. He was soon out of it, even beckoning his mother to get out of his view of the TV, but the left side of his face was skewed upwards and his right leg wasn’t working. Not knowing what was happening we bundled him up, out the door and over to the hospital. Lisa rang the paeds dept of Cork University Hospital from the car while he went into another seizure, to be told the paralysis was nothing to be too concerned about, it’s normal enough in frontal lobe epilepsy, which we know Freddie has. The focal activity of the seizure can have these temporary side effects which quickly wear off but seeing him like he’d been fish-hooked was upsetting. The ghost of Giant Haystacks was in action there or so it looked.

By seven o’clock he’d had a total of four and they quickly gave him the Lorazepam, the old faithful drug, the one that knocks him for six. However despite everything he was sitting up on the trolley when they wheeled him up to the ward half an hour later, tough little fecker that he is! By now the legs had come back to him and his face was getting its shape back again too. In his room he settled into watching a DVD, something quiet, and munched on an apple having missed his dinner. The nurses brought him a slice of toast and Lisa a cup of tea. ‘Flap over’ as my father used to say and I knew there was little left for me to do cept go home and feed Ruby, the poor child having been abandoned earlier in the evening.

For the second time in four days we’d been through it but Fred’s resilience carried his family over it all. Home he came again Wednesday morning as if nothing ever happened, just a little sleepy from all the drugs. When we were going to bed that night he said “I’m home again Dad and not going back to that hospital.” Said with determination too, the little man!

Right now he’s watching an Austin Power’s movie laughing his little head off at all the inappropriate bits but I’m not complaining, I have my little boy home.