Living (and Driving) With Epilepsy... And Other News (21 Days to Go)

So my new Full Driving Licence arrived this morning, thanks to mo chara Barra for his assistance, and also to my little brother again, he's done me a fair few solids already in this whole process, it's good to to have close friends and family... This has been something that's been sorely missed over the last two-and-a-half years and they'll be missed even more when I'm 'half the world away' (excuse the song reference but I'm really looking forward to Noel Gallaghers High Flying Birds at Hultsfred)...

The New Licence... With Some Minor Adjustments Of Course (Can't Be Disclosing My Secret Identity Now Can I)

In other news, my little Sister Sam is well on her way with her travels... She left just over a month ago to see the world and although I know she'll be missing our family and her mates, I know she's having an amazing time; it's a life experience that's scarceley rivaled. So far she's been in Thailand, Laos and Vietnam and she's just arrived in New Zealand where I presume, after a month or two of seeing the sights and the magnificant landscape of New Zealand's islands, she'll be settling down to ply her trade as one of NZ's newest top Hair Sylists for the next year... Lucky her!!

It's hard to believe I havent driven a car or a motorbike in almost 15 months! Anyone that's been in a similar situation will know that when you lose your licence for a long period of time, it's like losing your independance. Having to reply on public transport and friends and family to get around is so frustrating, the world becomes a much bigger place and it almost feels inaccessible. (I know that's a bit deep for a Friday afternoon but I'm feeling pretty pleased with myself right now so I could care less!)

I know one thing though. I wont be taking any more risks with this condition... Epilepsy is one of those things that unless you experience it from the individuals' perspective, you can never really understand it, especially because every individual with Epilepsy is different.

Most of the time I can work around the little issues though. Underlying traits of the type of Epilepsy I have, Juvenile Myoclonic Epilepsy (JME) such as Sleep Disturbance, Epilepsy Related Memory Loss or Myoclonic Jerks have become regular features but I can live with them as I've gotten used to them over the years.

The memory loss aspect of it, I admit, can be extremely frustrating. Especially as some people get the impression you're not paying attention or you havent listened to what they've said to you etc etc, the list goes on. Although there will always be times where I can't get around it, I've generally learned to balance it with simple memorising routines or just by reading things 2 or 3 times etc. It can be very irritating when reading a newspaper or a book though because I'll often get through a page and realise that I've taken absolutely nothing in, which means I have to read it all over again. Other times I'll be speaking with a friend or colleague and I'll get halfway through a sentence and realise I've forgotten a basic word. It's not even forgetting the word that's embarrassing, it's the pause halfway through the sentence that gets you, then you need to try think of an alternative word to replace this basic word. I can only imagine how it comes across :)

The myoclonic jerks don't really bother me at all though. Everybody has twitches so I can usually pass the Jerks off as a twitches... Granted some of them are quite abrupt but my friends just seem to find it amusing. Last night, I had a particularly exaggerated jerk and my right arm and leg literally jumped a foot above where they were resting. My mate was sitting on the couch too and immediately immitated what I'd just done. I doubt it even crossed his mind what had caused it but his response to it gave me a laugh and made me feel a lot less self conscious about it. I have had other instances though where I've been holding a cup of tea or coffee and it will just fly out of my hand. That can be pretty embarrassing but luckily it hasnt happened very often and thankfully I've never scalded anyone :)

Unfortunately though, there is the graphic side to JME. A full on 'Tonic-Clonic' seizure can be quite a scary thing. It starts with a load roar as the air is pushed out of the lungs and reverberates against the vocal chords. Then you lose all body control and consciousness, fall to the floor and your limbs and torso shake vigourously. This can last up to 5 minutes... In many cases the patient will wet themselves and bite the side their tongue as their molars clench together.
Fortunately for me I only experience the latter during my seizures but I'll tell you something for nothing; because of the force of the bite, the pain is excruciating and the discomfort can last for weeks after... Trying to eat when one side of your tongue is swollen to the size of a ripe cherry is not nice! The effects of a seizure can last days too, I suoppose the best way I can describe it is a feeling of cloudiness or grogginess. But the fact of the matter is, each seizure damages your brain cells and I can scarcely afford to lose any of mine as it is! :)

The person(s) looking on will only see the ugliest side to the illness though, which I suppose I will never understand aswell as I dont actually see this aspect of it. The fact that this is what people think of when they think of Epilepsy is a pity but it is, unfortunately, unavoidable. It is a graphic image and when you see it, it is etched on your memory, especially if it is a friend or loved one. For me though, I just wake up with a sore tongue and no memory of what's happened and I'm usually surrounded by people who happened to be there at the time. Usually the look on their faces is a mix of fear, shock and concern.
In fact, up to a year ago I had never actually seen a tonic-clonic seizure happen. When I watched a video of a one online, I have to admit, it was pretty brutal but unlike some people around the world I am lucky to come from an educated society, where luckily people are more understanding. Although most educated people dont know much about Epilepsy, they know enough to at least understand that it is just an illness, just like Diabetes or Asthma. Africa however is a different story altogether...

I know Mauritius is much more developed than most other parts of Africa and there is a good support network in place in the form of the International League Against Epilepsy, but there is still the stigma attached to it.
Also, knowing that I will occasionally need to work in much less developed countries on the African continent has made me think long and hard about looking after my health. A lot of the less developed countries still possess a widespread view that Epileptic Seizures are some form of demonic possession and for this reason Epileptics become social outcasts. In some cases, they are even tortured by witchdoctors in tribal villages where they believe they can 'Excorsise' the demons from these people. In many circumstances this leads to life threatening injuries, disfigurement and even death.

For these reasons I'm a big supporter of what the ILAE is doing as they extend help to these people and help integrate them back into civilised surroundings and help get their lives back to some sort of normality. Mostly though, it's about educating people, especially in underdeveloped countries where this work is needed most!

Anyway, it feels good to have my licence back and I've also sent off for my international permit so that's both of those crossed off the list, as they say in Tipperary, "We're chuggin diesel!" (We're moving along nicely/ things are progressing well).

Anyhoo... Till my next scrawlings.

Do chara, do mhac, do dheartháir,

Damien