” I know, I know times are changing. It’s time we reach out for something new. That means to you too, you say you wanna be a leader but you can’t seem to make up your mind. I think you better close it and let me guide you to the purple rain”- Prince.
I think you may have gathered by those lyrics that I was referring to Prince’s Purple Rain. I have to admit a lot of people I know aren’t partial to a bit of Prince however I do like some of his tunes and thought it would be apt to refer to this song considering it’s Purple day and all. I am an eighties child after all.
Right well.. Where do I start? Purple day. 26th March 2014. 65 million people of all ages. Support. Hope yet uncertainty. These words are ones that initially enter my mind when I think of Purple day. To spread Epilepsy awareness is one thing but to live a life with Epilepsy in it is another.
Whilst looking at the lyrics above I can’t help but wonder what it would be like to tackle Epilepsy alone. I’m fortunate that I have a support network around me to provide me with that element of certainty when an episode arises however I know there are many out there who don’t have that privilege and who to this day wonder whether support is readily available to them.
For those who have read Sazzle’s blog from the beginning will understand by now the complexities Epilepsy had and still to this day has on my life. It’s a condition where although currently seizure free rears it’s ugly head at the worst available moments can result in me having shaking episodes and medication side effects just to remind me that this condition is still a part of my life.
Throughout my mind conjures new questions only this time the way I perceive things is slightly different to past behaviours. The questions used to be why in times of weakness can we not all bypass these rocky road’s in order to give ourselves that chance in life.
Over a year ago I decided to write Sazzle’s blog to generate Epilepsy awareness in a way that I thought was necessary not only for myself but to see if anyone could associate with my concerns surrounding a condition that we all know is out of our control.
Fortunately I’ve had the honour of speaking with some truly marvellous people who in their own unique way choose to portray their own battle with Epilepsy and give the world an insight as to what life is like having this condition.
Ever since I was diagnosed I questioned why Epilepsy was in my life and what I did to deserve having this condition. At eight years old it’s hard to comprehend what Epilepsy is let alone trying to decipher where I slot into my condition however after numerous discussions with family, friends, support groups and the medical profession my condition turned into something I was gradually learning to understand.
To me Epilepsy was something I’d only ever known, to cast my mind back to pre Epilepsy feels like a distant memory. Let’s just say Epilepsy to me was like something you detest like possibly getting out of bed on a Monday morning knowing fine well you have to go to work to pay the bills and to keep a roof over your family’s head.
I disliked Epilepsy however knew that I had to attempt to face head on. In order to gain that independence the word blame had to be removed from my vocabulary and that with time Epilepsy shouldn’t be frowned upon as an unnecessary evil but a necessary one as it wasn’t going anywhere in a hurry.
To me the big question has always been what would my life be without Epilepsy in it and ultimately would it be any better than it is now?
As the years passed seizures would come, shaky episodes years after and the constant battle of how I would get through a day without having one of those two things was something that was constantly on my mind.
To programme your mind takes time and after researching the psychological aspect I’ve grown to understand that I allowed my condition to dominate my life for far too long hiding behind it at every available opportunity and blaming Epilepsy for the wrong doings in my life.
As I approach my 21st year of having this condition I can see what Prince was referring to in Purple rain.
My interpretation of his lyrics was that although he was referring to a lover he knew that times were changing and that indecisiveness can take over a bit like our minds can when the word Epilepsy is used.
To lose that element of control can be debilitating and can result in you feeling like you’re losing focus hence spiralling into further problems that make you feel paranoid and worthless however this can in time be altered.
I’m no expert when it comes to every seizure out there, every medication side effect or every electrical device on the market to assist others with understanding their brain activity however what I do know is that on purple day we can provide others with support. It’s about having the right frame of mind and knowing that getting back up so outweighs the staying down.
Life is not about excuses. I know that now. It’s about taking ownership for yourself and instead of thinking your hitting your head off a brick wall remembering that you can in time plough through that wall with your positive attitude towards your condition. That may feel like an unachievable task however anything is possible.
We can let the world know that purple is the colour for Epilepsy and that by wearing something as simple as a purple top, a purple lipstick or wearing what my friends would call “The Saz nail” i.e your ring finger with a dollop of purple polish on it is enough to show how important Epilepsy means to you. Whether it be you personally or someone you know that endures Epilepsy you are giving the world something to think about.
Next time someone walks down the street and has a seizure remember that the majority of individuals convulsing are unaware of their surroundings and by something as small as putting them in the recovery position and calling emergency services or post seizure advising them that all will be well means more to that person than you’ll ever know. I know it did to me.
Instead of writing about the remainder of my week I will conclude this post on this.
Life is a precious thing and a one with the right people around you can be a blessing. Epilepsy can be a condition that can test your patience, your ability and your emotions however what we should all understand is that with we aren’t alone. Just because you have regular seizures doesn’t make you any less of a fighter.
You are who you are and you have Epilepsy. As I approach my 200th post (Yeah I know I’ve done that many sheesh!) I know that acceptance is key and that until we accept what we have and eliminate the worry then this battle will only ever be that.. a battle.
Before I toddle off to make my lunch I wanted to say a massive thank you to you all for being my support network in particular four women who have shown me that Purple is our colour.
This weekend gone my friends Tiffany and Whitney from Epilepsy support groups The Ten network and Changing Focus did a sponsored walk around Washington D.C to spread awareness and to carry the flag for Epilepsy worldwide. Let’s not only give them a round of applause but thank them for walking for us.
Support is everything therefore wear purple, offer information but most importantly just be you.