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Still Standing…although…

…my knees are a bit wobbly!

In grand terms, I’m still trying to get my head around having Epilepsy and MS.

It took me quite a while to accept epilepsy into my life (and into the lives of those around me), I know it will be the same for MS. Yet, it somehow feels like I have a bit more to lose now.

Frankly, today, yep I’m on a bit of a downer. The whole situation seems very overwhelming for me and I know it also is for my family. Although this is my blog and these are my thoughts and feelings, I am extremely aware that it’s not just me this affects. I have the luxury of being able to get my thoughts out in writing, as I know me better than most and I know I would struggle to successfully say what I am able to write. I don’t know why that is. Although, I suspect it’s because this is my chance to free-wheel, as it were!! I get to write without having to clarify, justify or question what I’m feeling.

Don’t get me wrong. I want people to ask me questions. They often ask about things I haven’t thought of for myself and they often help me see with fresh eyes. Sometimes though, the questions I don’t have answers for scare the living bejesus out of me. It often feels like it’s all “me, me, me,” and do you know what, sometimes it is!! That said though, I know there is no way at all I’d be standing on wobbly knees if it weren’t for the people around me. My family aside, my friends and loved ones are what makes this situation bearable. The ones who call me out on my crap (Sarah – I’m thinking about you especially here :0) ) because they care. The ones who are brutally honest with me and can deliver that honesty with just the right amount of tenderness, keep me strong. The ones who just allow me to be me whether I’m wallowing or moving mountains, without saying a word. The ones who go out for lunch or dinner with me, knowing there is a good chance I’m going to talk/moan about my situation. The ones who sit next to me while we watch tv. The ones who push me on in the gym. The ones who make me laugh when I think I will never laugh again. The ones who let me cry and then ask if I’m “done now, because I’m missing the rugby”. All of them, serve to remind me that I’m not alone and I can do “this”.

So wobbly knees to hell with you!! Hmm – except after a million squats, then you can be as shaky as you want!! I’m changing my life to adapt to that which I need to adapt to. Some of you may not recognise me when I’m done, but that’s ok. Some may choose not to stand with me anymore, but that’s their choice. Others may decide to walk with me, though they’ve never travelled my path, that would be brilliant and I thank them. 

I choose to accept there will always be birdshits on the path of life. I choose to remember that if I stick my head in the sand, I leave my ass exposed. I choose to recognise that if I don’t make decisions about my life, then someone else will do it for me. 

I choose me.

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Epilepsy and Stigma…

Stigma. A mark of disgrace. Shame. Why is epilepsy stigmatised so much more than other chronic diseases such as diabetes? 
I had my first seizure in 1986. My diagnosis came 2 years later. I was told at the time that a skiing accident was the most likely cause. I’d never heard of epilepsy. I’d never been exposed to it. I’d heard of diabetes because a girl at school had it, but epilepsy was a new concept for me. It was decades later that I learned that I was actually genetically pre-disposed to the condition and that, although the skiing accident was bad, it was more likely to have been the trigger than the actual cause. I think of it as being like a switch. The accident turned my epilepsy on. I sometimes joke that another significant bang to my head may switch it off! 
Up until 1970 in the UK, having epilepsy meant that I would not have been allowed to marry. In some poor parts of the world, epilepsy is still believed to be a sign of demonic possession or witchcraft. In fact, in some parts of the world “witchcraft” is used by traditional healers to try to free the sufferer from the symptoms. These cures often cause more problems than they solve but the lack of access to proper medical care coupled with an unwillingness to admit to suffering such a stigmatised condition, means traditional healing is the only option available. 
Education is key to understanding epilepsy and eradicating the debilitating stigma associated with the disease. In my experience however, such education is not readily available, the condition is far from well researched and understood and, despite us living in the 21st century, social stigma is still rampant. I still hear stories of kids being told to avoid those with epilepsy in case they catch it! I still hear stories that epilepsy is a sign of being mentally disturbed. I still hear stories that having epilepsy means the end of a normal life. Thankfully, in the UK at least, I no longer have to fear the probability of me being burned at the stake for being a witch, however I do still have to live with the stigma of having epilepsy. How I choose to deal with that, though, is entirely up to me.
Having a diagnosis of epilepsy does not have to signify the end of the world. There are a multitude of different types of epilepsy and this comes with an array of severity and there is not a one-size fits all method of dealing with the disease. Having epilepsy presents an opportunity to make a choice. I can choose to let stigma, fear and ignorance dictate my life’s course; or I can choose to educate myself (and others), push some boundaries and live a full life. Hobson’s choice, in my opinion. I don’t for one second mean to imply that the latter is the easiest course of action, but I do believe it to be the positive way to deal with the disease.
Yes, I have personally experienced a change in attitude toward me when a person discovers I have epilepsy. I don’t hide it, I’m not ashamed of it and the attitude of others helps me decide if I want them in my life. Over the course of my career in epilepsy, my attitude toward myself has changed too. Epilepsy is a factor in my life, but it doesn’t make my decisions for me. I sign waivers to acknowledge my acceptance that certain activities could be considered more dangerous for a person with epilepsy; but as long as I’m not putting others into a dangerous position without their knowledge, then it really is up to me what activities I partake in. 
Epilepsy seems to have struggled to ease its way into mainstream acceptance. Unfortunately, a seizure is not a pretty thing to witness. It’s distressing, involves violent jerking, it sometimes involves leaking bodily fluids and can be accompanied by terrifying screams. It’s not a delicate faint. It’s a very physical reaction to an electrical disturbance in the brain. I personally think this is partly why it isn’t more openly discussed and, for want of a better word, advertised. Only very very recently have I begun to see famous faces talk openly about their experiences with epilepsy. In the main, these are sportsmen. I applaud this openness as it’s a way of demolishing the demons surrounding epilepsy and removing the stigma. I hope that more and more people start speaking up about their experiences and that it provokes discussion and leads to more research and better understanding.
Epilepsy is not the domain of the feeble-minded. It doesn’t restrict itself to a particular set of people. It’s certainly not contagious. Avoiding talking about it, will not make it go away and being embarrassed by it will not cure it. Talking about it, acknowledging it and being educated about it, won’t miraculously solve all problems, but it will help to diminish the stigma surrounding epilepsy.
I’ve dived with sharks. I’ve skydived. I’ve ridden a jet ski. I’ve skied. I’ve travelled the world. Trekked in jungles. Swam in clear, warm tropical seas. I’ve ridden the worlds highest amusement ride, the Big Shot. All this and more while living with a diagnosis of epilepsy. The only restrictions in my life are the ones I place on myself. Having epilepsy means my world is different and I’m more than ok with that.