All About My Lyme Seizures

My seizures

On planes, in Church, at camp, in Spanish class, in the bathtub, on the toilet — these are all locations where I have had a seizure. Or, as I call them, “spontaneous dance parties.” Come one, come all, let’s get down to some music-less shenanigans.

There are over 40 types of seizures. The one which most people think of when I say “seizure” are “grand mal” seizures. Or tonic-clonic. Or “The Big Scary One.” This dance features contraction of all body muscles. Shaking. Tongue biting. Vomiting. Not fun times. These seizures are terrifying to witness, but they don’t make up the majority of dance parties.

Fortunately, I don’t have tonic-clonic seizures, but I have some which are very similar. Unfortunately, doctors haven’t been able to completely figure me out, so we’ve just thrown things at my seizures to make them end. We have established general categories for my seizures, however. Let me introduce you to the various dance parties I host within my own body.

I have partial seizures. One limb will jive to an unheard beat. Or my hand will drop my pencil. Or my face will twitch. Or my foot taps to the rhythm of love, keeping me awake at night.

I remember one day when my hand let objects go seven times. I counted. When my friend made a comment, I brushed it off, “It’s just a dropsy day.” No, “dropsy” days are the days I have “atonic” seizures.

Atonic seizures, or drop attacks, consist of a sudden lack of muscle tone. The person usually remains conscious but goes limp as an overcooked noodle. The episode can last for a few seconds to a few minutes. Mine last a couple of seconds. The worst thing about these seizures it I don’t feel them coming. Thus, concussions on doorknobs are inevitable. So are instances of hilarity.

 

When my sister and her hubby came to visit over the holidays in 2016, my sister able to witness my seizures for the first time. I would be laying in bed talking to her. Mid-sentence, I dropped off: 1… 2… 3… 4… 5… Ten seconds passed, and I shot right up, continuing my sentence where I had let off. Caught off guard, she laughed. I forgot for a second it wasn’t normal for people to shut down during a conversation. At least, not physically. I know most of you are zoning out right now. COME BACK TO ME.

I worked as a writer for almost a year during my “sickest” twelve months. I would be sitting at the table typing, then drop off. I’d shoot back up again and continue, rubbing my hip, which I hit on the way to the floor. I imagined what people would think if they could see me. I giggled.

A  seizure disorder would be impossible to hide in an office setting. Writing from home, I was confident my employers wouldn’t consider me a liability, incapable of my work. Also, ensuring they wouldn’t call a priest to rid me of my demons. Thanks for the offer, but no.

Seizers, and sickness in general, are a great way to see the true colors of those around me. I can wake up from a seizure and read a room. Who is confident? Who is afraid? Who is silent? Who is conversational? It’s like having a superpower where I can see what everyone is thinking. Fear brings out people’s insides. So does the stomach flu. Which is why fear can be as miserable as the stomach flu.

Notice now, I haven’t talked about my big seizures. These aren’t tonic-clonic, but I’ll often wake up paralyzed, unable to talk, or in pain from a rugburn on my face. Those scare people, and they can be incredibly awkward for me, or, as stated above, incredibly revealing.

My family doesn’t appreciate it when I follow a seizure with a joke. It seems almost my duty, being a middle child and class clown. ‘Tis expected.

What does an epileptic say in the morning? ——-  Seize the day.

I have one friend who recognizes the hilarity of my seizures. He’s witnessed a couple of “big ones.” We’ll call this friend Matt. During a seizure at a mutual friend’s house, he took charge of the situation. The second time I had a seizure in his presence, he knew perfectly well what to do:

“You look like a fish flapping out of water,” Matt laughed after I came around. “We should just throw a mermaid tale on you and watch you swim through the chairs,” he continued, noting the empty church chairs they had quickly removed from around my person.

Another friend chimed in “Ooo, yeah. We could play ocean sounds and record a video.” I laughed until I couldn’t breathe. These people were true friends. These people get me.

Later that year, at a harvest party for college students, Matt approached me during a game. The game’s goal was to snatch clothes pins off people without them noticing. Each person was given three clothes pins, which they had to attach to their clothing. Everyone then had to try and glean other people’s clothes pins without them noticing. Matt and I had the most clothespins, though it looked as if I was beating him.

“Gosh, if you would just have a seizure, then I could take ALL your pins,” he said with a smirk. I laughed. Matt repeated the sentiment to a friend nearby. Horror overtook his face and shock took his words. Chill, man. Only a joke. Let’s have you sit down before you fall over.

Seizures are a bonding device. The spontaneous dance parties do me little good inside a classroom or on an airplane, but I can look on the bright side of things. By realizing how they allow me to see the world.

I’m suspecting you are looking for a point to this post. The point is: there is no point, but to appease your curiosity. I hope it helped.

I don’t know if there are other things people want to know. The most seizures I’ve had in a day are 34. The most I’ve had continuously are 7-15 a day. What else? Hmm… I don’t have them as much as I used to. I’m down to a couple a month. I can’t drive right now because of the dance parties, and other elements of my illness. It’s kind of cool to have chauffeurs, but it mostly makes me feel like an infant. Positives/negatives.

I hope this post gives people a little insight and a little permission. Illness, death, and disability don’t have to be scary notions. You don’t have to be serious. We can joke. We can talk about it. We cannot talk about it All things are permissible.

My heart is often begging for a friend to mock my illness rather than shy away from its serious nature. It’s welcomed. Questions are welcomed. Comments are accepted. Insults are taken, shredded, and burned.

Submit any of the above here ________. With sharpie. On your screen. Do it.

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