The month of November officially started yesterday and for most of you it marked the transition of one month into just another month, nothing special. For me, however, it was not just the beginning of any other month, it was the beginning of Epilepsy Awareness Month. A few months ago I had no idea that November was Epilepsy Awareness Month and even if I did know that fact I’m pretty sure it would still be any other month for me. March of this year changed that view however. March 2nd, 2014 will remain a significant day in my life as it marked the first unprovoked seizure I had. It was an incredibly frightening experience, one which has since been repeated multiple times.
Two months and nine seizures later I was prescribed anti-epileptic medication in hopes of controlling my seizures. It has been eight months and it hasn’t gotten easier. My seizures have put me in a perpetual state of fear. For those of you who have never had a seizure I can sum up the experience in one word: “hell”. There are few things as frightening as losing complete control of your body especially when you have a basic level of awareness of what is happening to you. I once had a seizure alone in a classroom on campus one night and that experience remains embedded in my memory as one of the top five scariest experiences I’ve ever had. I remember thinking through the entire episode “Stop moving so much. Don’t bump into anything or one of these cupboards might fall on you”. I remember thinking that and not being able to actually do anything, all I could do is watch on in horror as my body refused to respond to my efforts to maintain control. It may not be the “manly” thing to do but I’ll be honest here and admit that after that experience I cried. I was shaken up on so many levels: being alone when it happened, knowing how close I came to injuring myself and most importantly how helpless I was.
In that moment (and every other time I’ve had a seizure) my body felt like a prison. What unnerves me is I say that in the past tense but I know that next time (and I must accept that there will most likely be a next time) it will be the same. I have to reconcile myself with the fact that my body did not just feel like a prison but it was a prison and it remains a prison. I have to accept that seizures are now a part of my life, the uninvited guest that I have to entertain.
Epilepsy is one of the most common neurological conditions and there is a good chance that someone you know may be facing this on a daily basis. I cannot even begin to describe the level of stress it places on your life. There is a constant fear that you may have a seizure at anytime, that you may injure yourself or that you may have a seizure while sleeping and never wake up. Most people are not aware of how serious epilepsy is. I also have come to the conclusion that many people have no idea how to handle the situation if someone has a seizure in their presence. I am attaching these links in hopes of shedding a little light on epilepsy and the correct way to deal with someone having seizure.
Now this post covers the first few steps in my advocacy for this cause that is very dear to me. I think it’s very important that I acknowledge that this is indeed my cause as I personally suffer through seizures. Many people are afraid to speak out and say that they are epileptic and this is understood as there is fear of discrimination. I have never made it a point to hide my experiences but I also have not been as upfront about it as I should. I came to this realization yesterday after a friend expressed how hurt she was that I had not told her after over 8 months, with her only finding out by chance yesterday. This made me realize that this was the only way to be honest about it, by once and for all saying these words. This post also serves as a means to educate the public on epilepsy as I feel that many people are in the dark about it. Feel free to read more on your own especially if you know someone who is epileptic, as the little I have posted here is just a basic introduction. It is also very important to raise awareness as it is through awareness that funding is provided for research.
You can learn more about Epilepsy from the Epilepsy Foundation.