Seizures are terrifying. I realize that this blog is dedicated to epilepsy-a chronic medical condition that is characterized by seizures, but I have never really dedicated an entire post to what it is like to have a seizure. I have talked about the difficulties of going out in public in fear of having a seizure, perceived or imagined stigma, coming to terms with having a chronic illness, what it means to accept a chronic illness, how I have had to alter my life in order to accommodate my seizures, and the list goes on and on.
But as I was tossing and turning in my bed last night, I realized that I have never solely dedicated a post to what it’s really like to have a seizure. No bells and whistles. No comment on the stigma, no fear, just what it feels like in my body. Often people are fascinated as to what it feels like, because I am literally losing control of my body, and I just have to go with it. Well. Here we go.
My seizures are hard to categorize, so when people ask me what type of seizures I have, I can’t give them a clear cut answer. Most people are expecting to hear something like a ‘grand mal seizure’, because that’s the one that’s most heard of (in movies and such). My seizures don’t fall into that category though, because one of the major characteristics for that type of seizure is losing consciousness and losing control of the bladder, which doesn’t happen to me. My seizures have changed over time, but I can’t put it into a nice little box, unfortunately. I will try my best to explain to you what it feels like in my body to have one.
I have many different symptoms that happen during my seizures, but I will explain to you the ones that stand out most in my mind. I’ll also make up a little made up scenario, just because I’ve had a lot of the same scenarios, over and over again. Let’s say that you and I decide to go and get a coffee. It’s a crisp spring day and we slide into a little booth at the local coffee shop. We’re chit chatting about this and that. You’re telling me about how your boyfriend just got you a beautiful bracelet for your birthday, and of course, I ask you to show it off. I can’t stop blinking though. (This is an aura, which is warning sign of a seizure to come).
In my mind I am thinking about how one Christmas my boyfriend bought me a ton of Christmas presents, which were all amazing, and I open my mouth to speak. My mouth is open but no sound comes out. I have been rendered speechless. This is the beginning of the seizure. At this point I’m too afraid to try speaking. It seems that every time this happens I’m afraid to talk. I don’t know why but I’m afraid as to what will come out. My mouth grows wider and wider. I cannot, for the life of me stop blinking. My left hand starts to grip into really tight fist. My nails are digging in to my palm but I can’t stop it. Oh god I wish I could. My right leg is under the table, but is rigid as can be, and is just sticking out to the side, like it’s no big deal. If someone were to walk by, I might accidentally trip them. My left foot starts to tap just as if I was listening to some cool jams on my iPod. I start to cough. It feels like some saliva went down the wrong pipe. I cough and cough and cough. I hate these kinds of seizures, because I am at maximum risk here. I have a tapping foot, a rigid leg, a clenched fist, and I can’t say anything. Oh, and I am coughing like a mad woman. Thankfully, my seizures only last about 10-15 seconds, but to me they are 10-15 seconds of hell. If I am not in a safe place, such as in bed, or in a comfortable chair, I can do a lot of collateral damage. I have been in positions where I have collapsed to the ground, and hit my head, sprained my ankle, and gotten other bruises. Thankfully during this seizure you noticed right away that I stopped talking and you came and sat next to me, and let me lean on you while my rigid leg did it’s thing and while my tapping foot kept on tapping.
The seizure is finally over. You go and sit back in your spot, and I feel kinda confused for a moment. I find it hard to find my words. It’s as if I’m a shy school girl, about to ask her crush to the school dance. My tongue takes a few moments to realize that it is used to make words, and I am able to slide back into the conversation about boyfriends and nice bracelets. My body feels a little tired, but I try to keep the energy up until I can go home. I have a headache now, and make a mental note to buy some more Advil at the Shoppers Drug Mart before I head home. I still remember what I was going to say- before all the tapping, coughing, and the clenched fist. I tell you about the Christmas presents, but in this setting I don’t feel as excited to tell you about them. I feel drained, as though all the energy has been sucked out of me.
We decide to leave the coffee shop, and we’re walking outside on the sidewalk. You’re a few steps ahead of me, so you don’t see me stop. I suddenly have this feeling shoot through my body. It’s almost like my body has been injected with air. I feel light, and too relaxed. My left leg starts to shake and collapses on me. You turn around and see me trying to grasp at a telephone pole, one with a clenched fist, the other with a relaxed hand. You guide me gently down to the ground. Here we are, on the dirty sidewalk downtown. Two ladies see us and offer us a jacket to put under my head. My friend takes it and puts it under my head while my leg shakes. After the seizure is over you slowly help me up and we sit in an outdoor patio. I cry and cry. You ask me what I’m going to do, and I said I don’t know. I can only cry. I ultimately say that I’ll take the bus. You tell me that I should take a taxi, and I ultimately comply, and you come with me, because you’re so worried. You rush me home, and make sure that I get into my apartment safe and sound, and then turn around because you weren’t expecting this. Neither of us were. It’s hard to prepare for the unexpected.
It was weird getting into that head space of having a seizure, especially since I haven’t had one in almost a week. I think it’s a pretty realistic picture of what it looks and feels like. In a way, writing about my seizures has distanced me from them a little bit, and I feel like I have less of an emotional attachment to each episode. (Seizures are sometimes referred to as episodes). I used to burst out crying every time I had a seizure, because it was so traumatic. Now I find the more I talk about them, and the more I process them, the less traumatic they are to me, and the more becomes simply an episode.
I hope this blog post gave you an understanding as to what it’s like to have a seizure, and will really make you think twice about seizures. They definitely don’t all look the same, and they don’t all feel the same. If you have any questions, please feel free to contact me!
Also, shout out to JessRadio who inspired me to share my story of what it’s like to have an actual seizure.