The question dangles in space and remains unasked.
I could wait, but I don’t. It’s easier to provide an answer because most people are uncomfortable asking. There was a time I felt the same way.
Until I was 22, I never thought about epilepsy, other than when I noticed a girl in my church group wearing a medical alert bracelet. I asked her about it and she told me she had epilepsy. Then she said she didn’t want to talk about it and walked away.
I felt like a jerk for asking.
There was one other time. Before lunch, a work colleague screamed and fell to the floor, her limbs curling up tight and eyes staring without seeing. It was frightening. No one knew what was wrong or how to respond and someone said she had epilepsy.
When she came back to work, she wouldn’t look at or talk to anyone. It appeared that shame was somehow attached to this brain disorder—so I didn’t dare ask her the question.
Then I learned that this brain disorder has been part of my life forever. And I refuse to feel embarrassed or ashamed.
So…what’s it like to have a seizure?
The answer is complicated. There are more than 15 types of seizures, and I can only reflect on my own experience. (The Epilepsy Foundation is an excellent resource if you want more specific information.)
When I was 22, my 1-year-old daughter was taking her afternoon nap. My husband was off work that day, so we took a momentary reprieve from parenting and sat on the sofa to watch some trashy daytime TV.
I awoke feeling hours or maybe days had passed, with a vague awareness of my surroundings. The sound of a muffled siren. The unstable sense that I was rocking back and forth. Something hot and plastic covered my mouth and nose, and I promptly attempted to pull off.
I felt worried eyes from a dark corner. Or maybe I saw them, it’s hard to say. My husband. He said something about having a seizure, that I was in an ambulance, but I didn’t believe him. My head hurt. I slept.
I awoke, this time to a bright light in a strange room where my dad sat in a corner. He had the same worried eyes. My head hurt. I slept.
I was told I had experienced a grand mal—now categorized as a “generalized tonic-clonic” seizure. I didn’t believe them, although my very sore, very swollen tongue that I had bitten during the process convinced me that the seizure had actually occurred. I was a bit of a tough sell.
When a seizure seems to come out of nowhere, often the assumption is that the cause is an acute condition. Like a brain tumor. I was blissfully unaware of this dire possibility while my brain was being scanned. Really, I was more focused on my incredible headache. The CT scan and MRI revealed nothing life-threatening, and my family could breathe.
Later that night, an EEG determined that the cause was epilepsy. Something I most likely have had since birth.
I had often experienced the feeling that one side of my body was detached from the other, like my arm and leg and half my face belonged to someone else. The sensation lasted ten seconds or so, and then went away. Most often, I felt that way as I was falling asleep. It didn’t scare me; I thought it was my body’s way of saying, “Good night.”
When I was in the emergency room, my dad asked me why I never told him or my mom about the seizures, or at least, the weird feelings I described.
There was no reason to say anything, because I assumed everyone felt that way when they were falling asleep. It took 22 years to learn that no, not everyone feels that way when they fall asleep. In fact, most people don’t.
Thirty years later, I still find it disconcerting that there is this black hole in my memory, a lost puzzle piece that will never be recovered. I don’t like that I didn’t know what happened to my body, how I affected the people around me, or anything after I sat on the sofa that one sleepy afternoon.
My family and I have been fortunate, because epilepsy hasn’t slowed me down that much. Still, I worry sometimes.
I worry when I change medication or can’t sleep. I worry when I gain or lose weight or go through hormonal changes (hello, menopause!) I worry when I am surrounded by blinking lights—including those intermittent flashes of sunlight that blast through the car windows as you drive. Those are common seizure triggers, and even this many years later, I fear waking up in the emergency room again.
Having epilepsy is constant reminder that I cannot always be in control, or do everything myself. It has taught me to ask for help when I need it. It has forced me to get enough sleep and pay attention to my health.
So, I wear a bracelet in case something happens. I talk about my condition with family and coworkers and anyone else who might be interested, so if a seizure occurs, they will understand what’s going on. I don’t want anyone to feel embarrassed or ashamed to ask me questions. I’m certainly not embarrassed or ashamed to answer them.