I am writing about this recent experience with the express permission from the person in my family it involves.
For reference, and to foreshadow for a future post; we were visiting my husband’s family in Florida for the memorial and ash-spreading of the man who raised him, his stepfather. In his family, step is a rarely used term, and from here on out his step-dad will be referenced as Dad, because that’s what he was.
I experienced one of the scariest things I’ve experienced in a long, long time. The morning after flying in to Florida to stay with family, my husband’s sister had her first (and hopefully only) seizure. Seizures are something I don’t recall anyone in my family having to deal with, immediate family or extended family. Seizures are something my husband’s family has dealt with for a time with his Dad, whom had just passed away (not from a seizure).
There was quite a few of us staying with his mother at her house, and many of us were gathered there that morning, with a few additions in the form of other family members and friends of the family. We also had Zoe, her 18 month old cousin, and her two 1 month old baby cousins. Shuffling back and forth between inside and out, everyone in some form of getting ready for the day.
His younger sister Shaunacee, who is only a few years younger than I am, had her first ever seizure. We can only hope that it is indeed her one and only. Dad’s condition is what contributed to his seizures, and it wasn’t something he simply had from a young age. It was later in life, due to many things.
I’ll come back to the technical stuff later.
Some of us were gathered outside, some of us were inside, those of us inside had most of the children with us, save one of the toddlers. One thing I’m thankful for is that Shaunacee wasn’t holding her one month old at the time this happened. She and I are alike in our coffee drinking habits, and horrible habit of not drinking enough water. That morning was no different. Apparently for a handful of minutes, she experienced some tremors and twitches, which she attributed to probably too much caffeine, dehydration from that, lack of water, flying, and other things as well.
She stepped inside after making the comments about the twitching, and that she should probably get some water in her system. So inside she came, and opened the fridge. Our youngest sister was holding one of the babies, when all of a sudden that baby appeared in our friend’s arms. She rushed with a startled shout to the kitchen and as I stepped in a few moments later, I am hit by a feeling I hope to never experience again.
I was watching my sister convulse, her entire body contracting while standing up. I knew immediately what it was in my head, and oddly everything inside me went quiet. Shouts were made to get others into the house as we lowered her to a sitting position in the small space we had between the fridge and the island counter. Much of what I remember from this is in fragments, I don’t recall moving from one position to the next, only that I was suddenly “present” in one group of moments then another. After we helped her sit, then James was there, getting behind her and lowering her down, and our oldest brother was there as well and just after that, Mom was there. In the time span that this happened, and looking back on it it seems like it lasted next to forever. What I had always thought would only last a handful of seconds seemed to stretch on into minutes.
I fully believe that despite moving to her and trying to help, I think I froze more than once. Having never experienced something like this before, I had no idea what to do, other than a few rudimentary things I’d gleaned from this or that. It certainly didn’t kick in in any kind of helpful way, that is for sure. I felt so incredibly helpless. I hate to admit it but I’m glad that his family has experienced this before, and knew what to do. As much as I would never wish that experience on anyone, I was thankful that they had an idea on what to do.
Between the babies and the toddlers, thankfully someone had one toddler, and Zoe had come over to inspect what was going on with Shaunacee, it was all I could do, I scooped her up and got out of the way. I made sure she was ok and not frightened by what was going on and “cheerfully” plopped her down next to James’ best friend who was also holding one of the babies.
911 was called, James held his sister, they managed to get her tongue out from her teeth and thankfully she didn’t seem to have drawn blood. It seemed to take forever to get her really breathing again, and seeing her eyes pop open was a sight and a feeling that is etched in my memory. It was a relief to see that, and to see her start to come around, her body relaxing bit by bit.
I honestly can’t begin to imagine how everyone else felt through this whole thing. My husband had me make some phone calls, which I knew he knew I would handle, but also to some extent I think might have subconsciously been his way of getting me focused on something else. He knows me well enough.
It wasn’t until after she’d been checked out by the paramedics and was loaded onto the bus to head to the hospital that all of it really hit me in one huge rush. And perfect timing as he always seems to have, my husband was there to give me a huge hug before heading out behind the bus with his Mom to watch after Shaunacee.
I’m eternally grateful at the calmness that his usually very rambunctious family had through this, and having our best friend there helped keep me as level headed as I was. Which honestly still surprises the hell out of me, I honestly can’t speak to how I think I’ll respond in situations like that, but the quiet stillness outside I felt was not one of them. Inside I was going a bit crazy.
This is definitely a big push for me to learn more about seizures in general. And it turns out that not only can they be genetic, and it’s not just about having a seizure disorder, or some kind of big sickness that can bring it on. It can be very environmentally influenced, as it was with her.
She was given an array of tests, and it seemed (as it was explained to me) that she had experienced all of the things that can occur for someone to possibly have a random seizure. And some people indeed do have a random seizure, and may never have another one. According to what I was told there were around 5 things they discussed with her, and she had experienced all 5 of those things in the week or so leading up to the seizure she had.
As I do a bit of research, I found a term which I think might be possibly applicable, as I wasn’t in the office listening to the doctors. Nonepileptic Seizure. It’s certainly something I’m going to be looking more and more into, as well as Epilepsy itself. It seems that some pretty normal things can be triggers for nonepileptic seizures. Chronic sleep loss, stress, general fatigue, worry, anxiety, anger, and dehydration can all work to end up triggering a nonepileptic seizure.
And looking at the fact that her father had passed away days before her first child was born, dealing with having a newborn and the very much interrupted sleep (could be considered chronic for a time), being a heavy coffee drinker like me, traveling by plane by herself with a one month old for the first time… looking at all of that it certainly seems like that’s what caused it. And we’re hoping that the doctors at the ER were right, and that it is hopefully an isolated event.
It is very eye-opening to realize just how many things we consider relatively “normal” in our lives could possibly turn into a seizure for nearly anyone.
And looking at it that way, it scares the shit out of me (pardon the language). Considering what a lot of new moms go through, it amazes me that I’ve not heard of more new moms having a seizure. Or perhaps few are open about it with friends. Which brings me back to when I asked my sister if she would be OK with me writing this. Her response was “It’s fine with me after the experiences our family has had with them I think people need to be more aware that it can happen to anyone and what to do or at least what to expect.” And I agree wholeheartedly with her on that. Speaking as someone who hadn’t experienced it before, and who knows so very, very little about them, it’s a kick in the pants to learn.
While some people may never experience something in their lifetime, I don’t think it’s a bad idea for people to be educated/educate themselves on things that perhaps happen somewhere in their periphery so that should the worst happen, they have an idea of what they can do. And often, life happens and good intentions fall by the wayside a bit and we’re swept up in everything else. I know I certainly have. There are tons of things I’d love to learn and am thinking of making a bucket list of to keep myself on track. Even if it means just a bit of reading from time to time, it certainly can’t do any harm.