Years ago, I was giving a talk about Catherine’s life and how we manage to have hope through it all. At the end of the presentation, someone in the audience asked me, “What makes you angry?”
“I don’t really feel anger,” I replied. “I really don’t. I guess I’m lucky.” I surprised myself with the thought that I couldn’t honestly think of a situation that caused me to feel angry.
I went on to answer some more questions and then interrupted myself mid-answer for some other question I don’t recall now.
“I’m sorry. I want to go back to that question about anger… Seizures. Seizures make me angry.” I had realized I kept thinking about the question while answering the other more mundane ones. And I felt a surge inside me that nearly catapulted the answer forward.
I was somewhat embarrassed at having to go back to the question, but I felt authentic in sharing the reality of my experience, and I was glad for that. Last night, I got angry again.
I can imagine it’s hard to understand how a mom can look at her little girl whose body is out of control and feel anger. I’m not angry at Catherine in those moments. I’m angry at the seizure itself. Ridiculous, right?
But when they happen, they are the only thing in control and there is nothing to be done about it. Sure, we give the medicine we have on hand for such occasions, but that doesn’t work immediately, so we have to wait and watch, as the seizure rules the house.
Last night, I watched the seizure. And I watch our reaction to the seizure. We’re pretty calm. I imagined how someone would react if they saw us. I thought about my perception that they’d wonder how we can just sat calmly – waiting. They’d watch us go about our evening more or less and likely wonder why we weren’t running around in chaos like a TV drama, I assumed. Truthfully, there is a part of me that thinks we should run around in chaos just because that’s what you do see on TV when a medical emergency occurs. But reality is nothing like that.
I helped Sarah get dressed in her jammies. She wanted to play afterward with her medical kit, so I gave her shots in her arm and back and we talked about which ones hurt and which ones didn’t – all while sitting on the floor below the recliner where Brian held Catherine, seizing. Sarah listened to my heart with her stethoscope, and I watched Catherine’s foot twitch uncontrollably while Brian held her and waited for the medicine to work.
Little “Dr. Moore” got an emergency call. “I’m on my way! I have a stethoscope!” she said into the pretend 911 phone. I wished for a split second that someone was on their way with a stethoscope – or anything else that could make the seizure stop faster. I hate them. They make me angry.
Thanks for this honest post! So true your description of an emergency situation. Those of us who live it somewhat regularly don’t usually get panicked and crazy. Like y’all did, one parent can deal with the emergency. . . but there are other children that need some attention at the same time. Wow. Thanks.
After my head injury, the doctors speculated that I was having seizures. After a 5 day stay in the epilepsy monitoring unit, they (mostly) ruled them out. However, I did witness several of the other patients have grand mal seizures. The first one I saw was pretty terrifying, and I remember thinking to myself why aren’t the nurses and doctors doing more (and maybe feeling a twinge of the same anger)?
After my accident, the only part that was uncomfortable about the seizure like events (I say that because they never really confirmed or ruled them out) was the post-ictal feeling. The actual seizure itself was more or less non-existant. I only remember things ‘slowing down’ a bit before hand. You don’t even know it’s happening. I only remember coming out of it in a post-ictal haze, which could be kind of disorienting and confusing. Even though it was troubling to be out of sorts, I never was in any pain except for headaches I might experience after.
Jay,
Thanks a bunch for this. It’s interesting to hear what a “seizure” is like from the person’s perspective – whether they were actually seizures or not. Good to know they weren’t painful especially. I also didn’t know it was possible to stay for 5 days in an epilepsy monitoring unit. I might look into that. Cheers!