Hey all! HAPPY PURPLE DAY! Today is Purple Day for Epilepsy. It is where we recognise that people who have been diagnosed with any form of Epilepsy are informed with what is out there and can connect with others who are alike. It is also about letting the public know the truth about Epilepsy.
You might wonder why I am so passionate about this cause. I am an epileptic. So today I am going to share with you my story.
At 3 years of age my parents identified that there was something a little different about me. An avid giggler and communicator I could talk off anyone's ear (not much has changed clearly). However my parents would notice at times that I would stop communicating mid sentence and return to the conversation with no recollection of the event ever occurring. I was given an EEG, but no seizure activity was recorded. All through my childhood and especially in my teenagers years I still had no idea this stop-start motion was happening. I can understand the frustration now from my parents but at the time it was just requests for me to 'open my eyes' or 'stop doing that Joey' or 'wake up Joey'. The difficulty with this was that I didn't even know why my family was getting angry or why they thought I had my eyes closed, truth was to me I didn't.
It wasn't until I was 16 and my parents took me to a neurologist when I learnt that I suffered from what my then neurologist deemed as Juvenile Myoclonic Epilepsy- which suggests in several cases that it can be outgrown post the juvenile stage of life (since I know this was a misdiagnosis and I probably won't outgrow my absence seizures). I was informed that I have very minor seizures that would go undetected by those who didn't know me, it could appear as a daze or stare into space or me ceasing conversation part the way through speech otherwise known as absence seizures. We finally had an answer.
It did feel good to know what was going on and to put to rest finally what all this who-ha was about with me and my 'eyes' however I didn't expect to reject myself so much all at the same time. Frequently I would refer to myself as 'spastic' or 'retarded' and for one reason or another referring to my 'spaz pills' was the way I would get by with some level of acceptance that taking tablets each day was to be a regular occurrence now. It took a while to actually become okay with the fact that I wasn't anything that I said I was and that I just needed to adjust my lifestyle. This was all well and good until I became 18.
At 18years of age I went off to college and began enjoying University life, the nightlife too. Constantly told by neurologists throughout my University years (four years) that drinking more than 3 drinks, staying up late or being stressed would be my main triggers. Pretty ironic when you say it out loud. Needless to say I was an 18year old I struggled with the concept of change, that people (many I wouldn't know) had the potential to witness my seizures (albeit they last no more than 10 seconds) and most significantly I couldn't do what my friends were doing. In all honesty I felt quite trapped and I was determined to make sure epilepsy wasn't going to stop me from living how I wanted.
It was no surprise then (in hindsight) that I freaked my entirely family, out especially my sister (who graciously came to look after me), when I drank 12 drinks in one night, got up after 4 hours sleep and cracked my head open falling back on a brick wall in the college bathroom, gaining 7 stitches to my head, a sore nose (what I landed on next) and no recollection of how it had started. It was simply ridiculous. I was devastated when I couldn't drive, again feeling trapped except this time I knew it was of my own doing. Either way this accident did what I believe now it was intended to do, wake me up to the reality I faced and to be grateful for what I had. Life was going to be different but it wouldn't be dramatically different unless I enabled once scenarios to become realities. I did learn from my mistakes here but I also cannot say that I didn't test them again in my young adulthood life.
In 2009 I moved to a rural country town the place was completely different to anywhere I had experienced before. I began meeting people getting healthy, losing weight and building relationships- epilepsy was stable. Everything was going well until I was going through a very stressful time a year later. I had sought help from those I could and tried to reduce my stress levels but nothing could change the fact that I was unhappy, scared and stressed to the eyeballs. This resulted in hallucinations and a subsequent seizure that rendered me unable to drive, work and travel. Devastating was the best way to describe it. Years before I had made the choice to increase my risk to respond negatively to my triggers but in this instance prior to several events (not of my doing) occurring I was a very happy, healthy, fit woman.
A few days after the seizure I got tremors in my arms- my arms would shake for 6hours a day. I wasn't able to fill up a water bottle, I couldn't cut my food as I was still hallucinating, I burnt myself because I couldn't hold a cup of coffee and I couldn't do anything to stop my arms shaking. Getting the groceries was a task I knew would bring me tears because I had no control over my body. By this stage I had had a new neurologist for a few years, he had suggested that I get some tests but to be prepared for the potential of a brain tumour. In actual fact my brain was showing better signals then it had in the past and no tumour. This made it evident the events were all to do with stress exacerbating the condition. During this tough time I had plenty of fantastic friends, one in particular who was utterly amazing at supporting me through the tough time and dealing with the shame I felt towards my body. I will feel forever in debt to them for the love I received during this time- it really helped me get better, 300% better. I rested and the following year, still not driving or working initially I was able to begin rebuilding except this time I finally put number one first...ME.
Today me is still the most important thing. I have my pet loves like fitness, singing and of course writing but health is more than my weight in gold. I don't allow myself to live a life stressed or unhappy. I place my health first because I am no good to anyone, an employer, my family, friends if I am unable to function properly so I am more than prepared to make the tough decisions to ensure I keep me and my health at number one. Through doing this I have been completely seizure free for 4years. I still take medication but my mindset is completely different. The next stage of my life I will be thinking about children and I know what decisions I will have to make but that is fine. I am not worried about them. After all worrying doesn't help the situation anyway. In the meantime my neurologist has approved my Mt Everest climb in May with these words, 'just because you have epilepsy doesn't mean life should stop for anything'. I am so glad he said this because to me I am unstoppable. I have travelled to 9 different countries already and have come to a point where I don't refer to myself as an epileptic, don't get me wrong I am still completely aware of triggers and I am making the decisions I need to about everyday life. I have been dreaming of the day, I can visualise it on demand, where I will sit at Mt Everest base camp look down over the world and shout out my joy with tear drops on my cheeks because I refused to take no for an answer on the things I wanted the most.
I hope that everyone who has epilepsy, knows someone with epilepsy or is reading this has learnt something about epilepsy, gained something from this or is compelled to know more about this very common neurological disease. I have shared this very personal story for the purposes of connecting people together and proving that nothing should stop anyone from doing what they want to do. I hope that I have inspired you.
Please see the link below for information/donations etc for Epilepsy Action Australia. Every little bit helps! Thanks.