Today is epilepsy awareness day.
Since I can never remember a time without my special needs sister (she was born when I was 2), you might say my entire life is about epilepsy awareness. As such, you would think this would be an easy post to write. Oddly enough, it has been anything but. I think that I am so fully immersed in the facts and the effects of epilepsy that it is rather difficult for me to think of how to make others aware.
To say it another way, I don’t know what people might not know about epilepsy.
Nevertheless, here is my best attempt to highlight a few things you might not know about epilepsy. At the very least, these are things I would like my friends to know about epilepsy.
1. Not all epilepsy involves grand mal seizures.
When I explain to people that Alyssa has about one seizure every minute, most people are quite shocked and horrified. I think that is because most people assume that all seizures equal grand mal seizures… you know, the kind that throw a person to the ground. In fact, there are actually six seizure types that can affect individuals with epilepsy. Alyssa has myoclonic, atonic, and absence seizures, which means that you probably will not even notice the majority of her seizures because they are so brief and subtle. Nevertheless, we can all understand that one seizure every minute could make life rather difficult.
2. Epilepsy affects every person differently.
This might be obvious based on the last point, but each person with epilepsy has a different diagnosis, different levels of mental development, and different symptoms. There are dozens of disorders that involve epilepsy and each one can be dramatically different than the last.
3. Epilepsy doesn’t define our lives… even when it does.
Epilepsy is just one part of our lives. It doesn’t define us. As such, we do almost everything with Alyssa. We climb mountains, go to amusement parks, travel across the country, and go camping.
Sure, we might have to plan ahead to make sure we bring her seizure medications for a day trip (either that or we get home by 8pm). If an activity isn’t adaptive (ie, designed for special needs people), we may have to expend a lot of extra energy along the way. (Such as the time Alyssa could climb UP a rock, but couldn’t get back DOWN). And leaving the country with Alyssa hasn’t happened quite yet–but Canada is on the list for this summer!
But we also get to take advantage of free access passes to fun locations. Or get cut to the front of the line at amusement parks.
Long story short–we can do anything that anyone else does. It just may take some extra planning and effort on our part. But it can also come with unexpected perks along the way!
4. Living with epilepsy means you consider every possible treatment. Even the crazy ones.
Whether or not you actually decide to pursue a treatment, everything is fair game when it is first brought to your attention. So when doctors or well meaning friends suggest a treatment, you better believe it’s on the radar for awhile. Some of the more “out there” options that have been recommended (though not acted upon) for Alyssa include the Vagus Nerve Stimulator (an electronic implant on the “Vagus Nerve”), brain surgery, and yes… even medical marijuana.
Hey. If you haven’t been there, don’t judge.
5. People who gone through the same things we have are instantly kindred spirits.
I remember last summer when I stumbled across another young lady whose brother has special needs. We started sharing stories and then I asked about her brother’s diagnosis. She responded with “Well, you probably wouldn’t know it, but he has something called Lennox-Gaustaut.” Well, it just so happens that Alyssa has that syndrome as well–and we have never met anyone else who had it. Can we say instant bonding experience?!
But even if it isn’t the same syndrome, meeting others who know what it’s like to grow up with a person who has special needs or disabilities almost always results in a temporary new best friend. 😉
6. People who care make our lives happier.
We understand that it can be unusual, different, or just plain uncomfortable being around someone with such different needs than your own. While this may not be true for everyone, I think it is for most people who deal with special needs on a daily basis. We are not sensitive. We would far rather you ask and sound silly or offensive than not ask at all. If you think of or ask about a way to make our lives easier, it makes our day. Whether something actually works or not, the fact that you asked or thought to make our lives easier means the world. And remember–just being yourself and loving my sister the way you do me is enough.