I realize that often when I am writing, I may come across as flippant or cavalier when it comes to a serious medical condition. This is how I deal with it. This is how I cope with it. This is how I address it. This does not mean that it is not a serious medical condition. This does not mean that it is not dangerous and that there aren’t risks associated with it. Every case of the condition is different, and everyone has different experience. They are all serious. It’s one thing to look at the condition with rose-tinted glasses and focus on what we can do. It’s another to disregard the risks. And while I like to pose with rose-tinted glasses, it does not mean that I am not aware of the challenges and dangers.
For people who are unfamiliar with epilepsy/seizures and the risks that they can pose:
Falling: When a seizure occurs, somehow we have to get from the position of standing/sitting to the ground. There are a lot of things on the ground, nevermind between standing and the ground. Even if the seizure itself doesn’t cause any injuries, the ground, parking blocks, countertops, furniture, walls, all of those things can hurt. Also, falling onto roads. Falling onto train tracks.
Secondary Injuries: I don’t need to describe this too much. Concussions. Black eyes. Bruises. Broken limbs. Burns. Disorientation. Speech impediment. Broken teeth. Bloody lips.
Cost: How can this be explained? There is cost, and then there “future cost”. There is the cost of medication, identification, reconstructive surgeries. There is the lost future cost. This applies to difficulties in obtaining employment, resulting in lost income.
Isolation: It becomes more difficult to get around if you don’t drive. Some cities have better public transit than others. Some people have family to courier them around as needed. Some people live in areas that are accessible to stores, trails, services. There are a lot of people who don’t, and that can be a challenging reality.
Discrimination: Epilepsy can’t be seen. Seizures can be witnessed, but that’s all about timing. Injuries can be seen. Epilepsy itself cannot be seen. Any “invisible disabilities” can’t be seen (hence, invisible). I’ll be honest, even some of the injuries that I’ve had could have been from tripping, slipping, the normal things that everyone is at risk. There have been people who didn’t believe me, either that I had a medical condition or a seizure. Many people simply don’t understand the severity of the condition.
Insecurity: I apologize after having seizures to everyone around me. I apologize to my friends, family and strangers about having a major medical condition because I somehow feel like it’s something I “did”. It’s not stepping on someone’s food while dancing (minor) or knocking over someone’s coffee (let’s be honest, that’s unforgiveable). For people without epilepsy, can you imagine the feeling of needing to apologize to everyone for something that is out of your control?
Guilt: This goes along with insecurity. I would likely be upset if I witnessed someone I cared about experiencing a major traumatic experience. The friends I have and my family have seen it. I can’t even imagine what it would be like to see someone you love going through that, knowing you can’t stop it, and knowing it’s hurting them. And then I feel bad (later) for upsetting the people I care about.
Side Effects: Have you ever read the list of side effects on a prescription bottle? Some of those are really serious and life-threatening. These side effects deserve attention and respect. Some of them affect how we look, some of them affect how we feel. They can affect our relationships, our friendships, our energy, our ability to read and write. Weight gain, weight loss, nausea, hair loss, fatigue, insomnia, depression, irritability, vertigo, anxiety, any combination thereof.
Summary: I have a choice. I can deal with my epilepsy by being flippant and cavalier about it. I choose to do so. This does not change that epilepsy is a serious medical condition, and that seizures are traumatic events to the body and to the brain. As I’ve said before, it feels like the worst migraine you’ve ever had, and a charley horse, nevermind any potential subsequent injuries. This is my reality. This is the reality for the people who choose to be part of my life. I am grateful to those people who choose to stay, because I know from experience that is not always the case.
Part of why I started the blog was to write about my experiences and show that epilepsy doesn’t have to cause a cessation of enjoying the world. It is a reality that I have, and another 2% of the population has. However, I am not trying (in any way) to suggest that proper care and attention are not given to my condition. Just because my choice is to engage in the world doesn’t mean that I don’t spend five days in bed if I have a seizure. I have to recover too, just like everyone else. What I choose to do with the rest of the time is up to me. And is up to YOU!
Thanks for sharing! I too am epileptic, and your description of the guilt feeling really hit home for me. My seizures cause violent involuntary movements and I often end up with cuts, scratches and bruises as a result. When I regain consciousness, there are a few minutes of profound and terrifying confusion until the memories start to trickle back. But you’re right, the importance of maintaining a ‘normal’ life is something I’ve found very empowering. By the way, I found to your blog through the ‘At Your Service’ article you were featured in. I’ll definitely check in once in a while to read your stories.
LikeLiked by 1 person