It was a few days before a big meeting that I was organizing at work. I was pulling together the leadership teams involved with a project that I am working on to talk about our progress. It was a big deal and I wore my anxiety like a jacket. Even if I wasn’t preparing for the meeting, I was thinking about it. I was stressing about it.
The meeting was on Tuesday. On the Sunday before, we were having a good day. We saw a movie. My son went to the park with a friend and I worked on my slides for the meeting. That night, though, my son started to act strangely. He was skirting boundaries. He played with an outdoor ball in the house. He started to play a little too dangerously with his foam baseball bat. I asked if he was okay and which way his brain was going and he said he was fine and that his brain was going forward, but I sensed something was off.
When it was bedtime, my wife started to get him ready and I fired up the laptop to work on my presentation. But when she asked him to clean up his toys, he started to throw a fit. It escalated quickly and before I knew it, I was sitting on the ground holding him. We tried to work on his breathing exercises and his coping skills but he was past the point of listening.
He was trying to hit us, spit on us, and calling us by our first names and saying mean things. For more than thirty minutes, I sat on the floor, holding my son, trying to comfort him. A few months ago, these episodes were happening all the time. Now, they are rare. But whether they are constant or rare, the impact of seeing your son struggle with his emotional regulation and become someone else is painful. After he finally came out of it and we put him to bed, I tried to work on my presentation, but I couldn’t. I was so shaken up.
The next day, I went to work thinking about the night before and also stressing about the meeting that was now only a day away. It’s not easy to go in the next day and tune out the night before. It’s the same when he has more seizures during the night than he normally does. I show up to work stressed and tired but try to focus on my work. I just hope it doesn’t happen on a day where I have to be “on.”
Epilepsy doesn’t care what else you have going on. Epilepsy didn’t care about my big meeting. It doesn’t care that we’re on vacation. It doesn’t care that we have plans.
My son had seizures on the baseball field. Seizures in Hawaii. At Disney world. A seizure in the pool. At school. But it’s not just seizures, it’s the overmedicated, the behavioral issues, the fatigue. Epilepsy and its entourage can show up anywhere, anytime.
When it does, you can’t send it away. Everything else gets pushed down the priority list. You have to deal with it right now.
And then, after you are done dealing with it, you figure out how to transition out of crisis mode. You go to work or you go to school and figure out how to go back to normal.
“Normal”, as if it’s a different place. But it isn’t. This is our normal.
Also published on Medium.
Our son was midway through 10th grade when because he was assualted. It trigger massive seizures that initially were misdiagosed as psychosis. Almost two years to get diagnosis of hypothalmic hamartoma and thalamic hamartoma seems the laughs and rages were part of seizure mode. We tried surgery but the “textbook” procedure left a bit of hh behind. Shortly before second surgery we learned he had Myhres Syndrome and we were advised no more surgery unless life or death. He too has seizured everywhere. The following post ictal response can be terrifying. Crisismode is an everyday activity. Hes no longer in school. He asked not to be as he was afraid of being hurt again as well as maybe hurting others when he becomes “lost” within his “noisy burning brain” He was 18 when diagnoised with the 2 hamartomas, and 19 when diagnoised with Myhres. 18 years of going to University of Iowa Hospitals for so many things….vestibular issues, urinary issues, ideopathic short stature, precocouis puberty, sleeplessness, tendon strictures, hearing loss, sever timnitus, eating difficulties, and with the newest diagnosis we wonder…is thereanything else that has been missed, why didnt House magically appear to make everyone work together to solve it, and what does this new journey entail. Thank you for sharing..while I would not wish this on any child in a way its comforting to hear other parents who face crisismode and continue on wirh life.
Thank you for taking the time to comment and share your story Susan. I think we are waiting for Dr. House, too. Let’s hope he appears soon. ~Dave
Thankyou for sharing this. So true.
“I just hope it doesn’t happen on a day where I have to be “on.”” … As an adult with epilepsy, your posts have resonated with me as I have worried and been frustrated about how much my needs impact my family. I am the one that is supposed to be the caregiver. My child is not supposed to be the one who has had to know how to navigate me during and post-ictal from before Kindergarten. Right now my husband has a huge day at work and he is having to take extra time to bring her forgotten laptop to high school because I’m not seizure free after 4 surgeries and still can’t drive. I offered to take it by subway and my husband said it would be a waste. How do I explain that it is not just about my time, but also about feeling like it’s a waste of his time and that I can do it, too?
I’m sorry I missed this comment, Ouida. That sounds frustrating. I’d imagine it’s easier on my son because we’re expected to take care of him. But when you are the parent, I’ve talked to many people who feel like they can’t contribute or that they are an added burden or an obligation. It’s rarely true, but those feelings are and they’re huge. I’ve seen it in my life, too…being too helpful and trying to do everything and take care of everyone, but not leaving space for the people around me to feel like they are also needed, and valuable, and necessary, too. Change for me started with a conversation and understanding the other person’s side of it. Maybe sharing how it makes you feel will help you, too. ~Dave