This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
As hard as epilepsy is on me, I think it’s harder on my family. They have to watch when I lose consciousness. They are the ones who see me seize. My husband and children are the ones who lose out on days of parenting. They are ones who get snapped at when my brain is mushy and confused and can’t process sensory information. My family bares the brunt of that. I yell at them that they are too loud. I complain about the light.
I am wracked with guilt that I am sick. I know logically it’s not my fault, I shouldn’t feel bad. But I do. I feel like a burden. My daughter once had to stay home from school to watch over me. She was 10 or 11. That felt like a big fat F in the parenting column.
When I was pregnant with her, I was given a list of things I should no longer do unsupervised. I was told I was no longer a full-fledged adult. I required observation… at all times basically. The outside world isn’t safe for me to go alone. My doctor told me so.
While writing this, I made some sort of sound and my husband whipped his head around. Then he told me, “It’s the million little things that are nothing that are the worst.” Some sounds are nothing. Some sounds are seizures.
Many times I have been alone in my room, I’ll laugh something I’ve read, and my family shows up with terror in their eyes. It’s a special kind of look. The look says, “Are you having a seizure?” It’s a sad, puppy dog look, wrapped in fear and sometimes annoyance.
Once I got stuck folding laundry for a minute or so. I folded a towel over and over again. Then I was back and had no memory of it. My kids had to tell me. I was physically unhurt. I didn’t grind my teeth into my tongue. I did not fall to the floor or onto the table. I felt more or less okay. They still had to change their plans to care for me.
Kids with sick parents have to be older than their age. We joke that driving will be their chore, not a privilege. They will HAVE to get their license to drive me around. It’s a joke, but it’s not. We try to keep it light, but remind them: Life isn’t fair. But we have to go on, I guess.
I wish my kids didn’t know what a “normal” seizure looks like over an emergency. There’s a difference and they know it. My seizures have so many side-effects it’s hard to keep track of them.
I’m not what I would call healthy. But I can pass. For a while. A few weeks, a month, maybe longer if I’m lucky. But epilepsy will call my name and my family will have to pick up the pieces and tell me where I am and what’s happened. They make dinner and get me ice water. I’m like a baby again. I need to learn to talk all over again.
When I was most distraught, I asked my husband what I was supposed to do? How was I supposed to go on? He said, “Pick yourself up off the floor and go on. You do it all the time.” It was a revelation for me. I do. I wake up on the floor and I have to get up. I hit rock bottom and get up again. My husband and children help me up. They lend a hand when I can’t stand completely.
I don’t like to consider what my life would be without them. Who would tell me I was folding the same towel repeatedly, just like I’m stuck buffering?
It’s okay, I’d rather they laugh about it than cry. Although I know they do that too. My son gets in trouble in school after I’ve had a seizure. He’ll try to hide it but the fear bleeds through. Seizure days are the worst. We are all on high alert. My kids are latchkey kids so they can get in if I’m having a seizure.
I don’t know how I’m so lucky. My family still loves me despite it all. The rage, the tears, the seizures, the mood swings, mania when I don’t know I’m manic.. They have to live with it.
Thank you, Adam, Zaria, and Dax. You give me light in the dark when I can’t see.
NEXT UP: Be sure to check out the next post tomorrow by Maureen Knorr at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET