Epilepsy…

Like I said I was diagnosed with epilepsy at two and continued to have seizures until around 13. A lot of times when you start having them so young, you can grow out of them and that’s what they think I did. I still have to say I’m epileptic due to the fact that I could potentially just have one randomly. It’s a pretty scary thought to think that at any moment I could fall over and start having one and that starts me having seizures again.

A typical seizure for me lasted most of the time longer than 5 minutes or just up to 5 minutes. I’ve been hospitalized multiple times because of it. I would typically just lose consciousness and start convulsing, which would eventually lead me to peeing myself. The medication for when you have a seizure, that brings you out of it, was a shot, and it went up the bum. Once I got that shot, I would eventually come out of the seizure. I often remember when I came out of it, I was being bathed. A lot of times after a seizure I couldn’t remember what I did that day or even a couple days before that. I’m told what happened and a lot of my childhood memory is what I’ve been told or based around a seizure event.

An area seizures affect is the memory side of things, and I have probably the worst memory ever. I had left temporal lobe seizures and most of my memory problems are left temporal lobe, which has to do with the memory for learning names, remembering facts for exams, remembering words, and getting stuck mid-sentence. If I forgot your name and we’ve met more than once, just know, I’ll probably ask again multiple times. Even with the seizures being well under control, I’ll still have memory difficulties.

When I think about seizures, the one thing that sticks out to me isn’t having a seizure or going through one. It’s the memory issues I have after. A lot of the time I feel like a complete idiot because I don’t have the best memory. I hated school growing up, something associated with memory and having to constantly remember the things you’re learning is a nightmare for me. Even though I feel like a complete idiot most of the time, I don’t let that get to me. I try my best to learn new ways to remember things, associate what I’m trying to learn with other things, or sometimes I just say it over and over in my head till I remember it. Even then, this stuff doesn’t help it.

It’s such a weird thing to live with. Yea, there’s medication I can take but even then, I could still have a seizure. I think there’s two ways people can live with this or anything really, 1) live in fear and not live your life in the off chance you’d have a seizure while doing something or 2) live your life and enjoy it, have seizures, and continue on doing the things you want. Saying no to things due to fear is no way to live. If you’re living in fear because something could happen, I strongly encourage you not to. The opportunities you could be missing out on. I still sometimes let fear win, but I’m constantly learning how to not let fear take over.

I’ve never witnessed a seizure, so I have no clue what they’re like. Here’s a story from my neighbor:

“Since I am both a nurse and the neighbor next door, sometimes I would get a call to come over and help out. Grand Mal seizures are scary to see, but inwardly I always thought Rachel’s mom, Tammy, handled those situations better than most medical professionals.

Grand mal seizures have such violent muscle contractions that it is common to see someone have a blue tint to their lips and face while the seizure is happening.  It interrupts normal breathing patterns and uses a lot of oxygen. Fortunately, they usually don’t last more than a few minutes, but no one wants to see a loved one suffering.

It wasn’t common for Tammy to call for help. But one day I got a call to come over right away because Rachel was having a seizure. All I knew was that meant it must be worse than normal.

Rachel was down in her front yard and actively seizing. Both Mike and Tammy were with her. But Tammy was not her normal calm self. Rachel was very blue.  I knelt beside her and noticed that in the moments where her muscles were relaxed, she wasn’t breathing. I looked at Tammy and said I need to start CPR. She nodded her head yes, because she was on the phone with emergency services. When I tried to breathe air into Rachel, I realized that her airway was blocked. So, I did what was called a finger sweep to check for any obstructions. Unfortunately, just as I got my finger in her mouth her muscles contracted again. That meant she was biting the heck out of my finger. At the same time, I felt what I thought was a ball of chewing gum at the back of Rachel’s throat and was able to pull it away and curl it into my currently trapped finger. Mike was trying to help get my finger loose, but the best thing was being able to tell them she must have been choking on gum and it was out of the way. When she relaxed again out came my finger and the gum, and Rachel was able to breathe in air. What a relief to see her turn a normal color again! All of us were so relieved and thankful.

Shortly after, the seizure stopped and Rachel was sleeping but breathing well. I remember jokingly telling Tammy, “I’m not sure we should tell her about the mouth to mouth part of this, she might be super traumatized by the thought of that!” Rachel and I have joked about it a few times over the years. She usually makes a disgusted face with a curl of her lip and a little shudder. It always makes me laugh. She’s a brave young woman; not because of her battles, but despite them.”