Saturday, 26 March 2016

Purple Day for Epilepsy 2016

So today is Purple Day for Epilepsy - a charitable event started in 2008 by Cassidy Megan to raise awareness for epilepsy, a mental disorder characterised by overwhelming electrical activity in the brain that can lead to seizures of many intensities, from minor losses of focus and memory to violent fits that affect the entire body. It's surprisingly common, with over 50 million suffering from it worldwide, many of whom continue to struggle finding a solution for seizure prevention. Doctors continue to research epilepsy even as we speak, and hundreds of medications exist, though success rates fluctuate so much that treating the disorder is still a brutal challenge to this day.

For me, seizures began towards the end of 2012 as minor bursts of elation, which made me feel hyperactive and upbeat. Throughout the next year, they maintained the elated trademarks, but were joined by new worrying effects of memory loss, slurred speech, loss of concentration, and vacant behaviour. Following this, I suffered my first tonic clonic fit on March 19, 2014, whilst, believe it or not, playing Pokémon cards with a close friend of mine. The seizure began when I went to the bathroom; I felt a strange aura overwhelm me, and from there I remembered nothing until being woken up by paramedics with my head feeling like it was being smashed repeatedly with a mallet. According to those who witnessed it, I had reentered my room and asked my friend if there was a way to lock the door, before abruptly collapsing and fitting in front of him.

Fits, formally known as tonic clonic seizures, are the thing most people associate epilepsy with - whenever many people think of seizures, they automatically assume it means flailing on the floor, drooling and suffering some sort of spaz attack, before passing out for quite some time. While there is a certain degree of truth, and it is understandable that some people don't fully understand, this assumption also leads to a lot of blissful, and sometimes offensive, ignorance over the subject. Epilepsy is both a combination of minor seizures and severe fits, with the transition from minor to major being unclear, but in my experience, a fit is usually triggered by a blow to the head whilst suffering a lengthy minor seizure.

The cause for epilepsy in people is never clear - my scans showed the left hemisphere of my brain was slightly malformed, but this isn't always a direct cause. The development of the disorder has nothing to do with poor health or a bad lifestyle, though of course keeping healthy does help to reduce and eventually avoid seizures on a regular basis. As previously said, a minor seizure is usually just characterised by the person looking vacant, perhaps saying something quite strange, and then slowly recovering and returning to normal - while they may remember the moments before the seizure, anything that happened during it is generally forgotten. A fit, as is well known, has the person shuddering violently, their entire body losing control of itself, followed by a brief moment of unconsciousness and then a slow recovery. Victims should never be touched while fitting except to help them avoid injury, and placing them in the recovery position when knocked out is the next crucial step until they wake up.

I hate the notion of trying to seek sympathy with such a disorder, because it is both insulting and inappropriate, and while epilepsy has had a severe impact on my life, it doesn't mean I have a bad one. One of the worst parts was before it was even diagnosed - I passed my driving test in December 2013, three months before my first fit and eventual diagnosis, and so I had absolutely no idea what these strange losses of focus were. This was the case dating back to the end of 2012 when they began in smaller doses and at lower intensities; I assumed I was dehydrated, didn't sleep well enough, or perhaps my glasses were outdated and so new prescription was needed to avoid strain on my declining eyesight. Soon after diagnosis, I of course had to surrender my license, and the general rule of thumb is that it cannot be reacquired until at least one year of being seizure free. A compromise is thankfully met as I was issued a bus pass which allows me to get any bus in the UK for free outside of rush hour, and can also apply for discount rail fares.

Wearing security bracelets such as this is always a good idea in public in case urgent help is needed.
While this free/discount public transport is all good, it's still not the same freedom as driving, and after putting so much effort into learning and passing the test (after failing my first attempt), it was crushing to have to give it all up in an instant. Starting my current job in June 2015 lead to a lot of stress and caused my fits to dramatically increase, many of them taking place at work in front of everyone, which eventually lead to severe depression and anxiety. The longest I ever went seizure free for was between May 31 and July 7, 2014 - the latter day saw me suffer a tonic clonic fit, and since then seizures have happened regularly, with the longest free period lasting barely three weeks.

A month ago, a new medication named Zonisamide was added to my list, and while it initially had no real impact, I recently went almost a fortnight without a single seizure. However, the other day, it came to an unfortunate end when, in my sleep, I suffered four fits in the space of barely seven hours, leaving me a complete mess the next day, despite me being in no pain and having no memory of it. I had lost a lot of my memory even outside of the seizures, had a broken perception of time, and felt several personality changes inside me, losing interest in things I had previously been obsessed with and quickly developing new fondnesses in their place (this is not a porn joke). Despite being at work the previous day, I felt like I had not been there for weeks and weeks - such a major loss of awareness and focus causes severe problems, which can't really be understood until experienced. Although the fact that I had been very ill at the time with a chest infection could've influenced these seizures, their sudden, violent occurrence was never quite fully understood, even by doctors and nurses.

Having epilepsy does not mean you're unhealthy or weak, and discrimination against it, as is the case with any form of prejudice, shows naught but fault towards those responsible. While I hate to sound negative, it isn't something I feel makes me unique or proud, and I have moments where I honestly wish I was dead when it gets continuously worse and can't be understood, strong as that may sound. But I know that, eventually, it can get better, because at the end of every storm there is of course a rainbow - which I know don't have purple in them, but oh well.

Happy Purple Day!