Anya Shares Her Seizure

It was November 3, and all was well. I woke up at my usual time. I'm not a morning person either way, so I may have been grouchy but I was okay. It was the kids official day back to school after Election day, and Anya was ready to go. She had a purple flower hair clip that I'd handcrafted in her hair, and she was excited about it. When I told her why I wanted her to wear it she understood.

When I was a kid I don't remember epilepsy being such a huge conversation. I knew I had it and I knew how it made me feel, but seizure first aid was probably the only thing taught about epilepsy back then. At one point in time people were even misinformed about that. They used to think to put a spoon in a person's mouth to keep them from biting their tongue, but on the contrary that is awful because it can cause their teeth to break if the person having the seizure is grinding their teeth. 

Anyway, by the time I was a kid science had come along but it was still so little. The different types of seizures was not widely known. Emergency medication that could be taken at home hadn't been developed yet, and even though there were links to mood disorders developing from having epilepsy for an extended period of time no one seemed to research it enough and prove it. Now they're not only proving it but typing it up in full reports on discharge papers from the hospital if you're coming for reoccurring seizures. I couldn't believe it! All these years and that was the first time I'd saw that in black and white. 

That day after I'd let Anya get on the bus I never thought that in a few hours I'd be RUNNING up the streets odd our neighborhoods trying to get to the school. I shouldn't have, because I'm over 20 weeks pregnant, and when I did I started feeling a seizure aura myself. So I slowed down and watched my pace. I actually got to the school in about 7 minutes when that is a 12 minute walk. I actually beat the ambulance to the school on foot.  

As usual I had to go through the COVID-19 protocols at the school. Get my temperature taken, put on a mask...etc (cause who remembers to get a mask when it's an emergency like that?). Finally I was lead to Anya by her teacher Ms. Ford who was laid down in the classroom on the floor with head supported. This might've looked like a scary sight however, everything was perfect for my baby concerning seizure first aid. The crazy thing is probably days prior me and Ms. Ford had a conversation about seizure first aid that was imperative! The topic came up when Anya was at school. She had a dizzy spell that felt like it would become a seizure and she was sent to the front office. Unfortunately there were no nurses present on that day and the only one who can administer emergency meds is a nurse. Ms. Ford was actually doing the right thing by sending her to the front office. Overall it resulted in her having to go home immediately and getting a 24 hour no return statement sent home with dad. This was even made in error according to the nurse when she returned. She said all staff is not up to date with what qualifies as a 24hour no return situation. I actually wasn't angry, but I do think if COVID-19 has all the schools up in arms like this, they either should have stayed completely virtual or stuck with the hybrid schedule that they put into affect last year in the 2nd semester. 

Anya went on to the hospital on that day after school, and she said for the most part she doesn't remember anything. The way that she described it, everything turned white and she couldn't get out of the white. When she woke up she was just waking up in the room at the hospital. This sounds familiar only a little but the White out is strange to me, because everything would just turn black for me as a kid. I even experienced strange smells before the seizure would happen. I used to say it smelled like I'd been sucking on pennies and the smell would get stronger until I couldn't breathe, and then finally I'd black out. Just like Anya I would wake up in the hospital completely unaware of the events that occurred in between. 

Just reflecting on being at the hospital my son (although busy) was very helpful to his sister. There was a time that Anya reached out for someones hand and he made himself available. She didn't recall this but he did. At one point I had to tell him to give Anya space because he was trying to embrace her while she was recovering and being observed by doctors.  When Anya became more aware she was asking Victor to let her go, but I took that time to tell her how helpful and supportive her brother was while she was recovering from the seizure. He even let her color in the book he'd been given by the nurses because he just wanted his sister to feel better. 

Later on Anya was in the postictal phase. She went from being incredibly exhausted to being terribly hungry and begging for food. We were all given sandwiches 2 of which Anya consumed and had 2 juices with it. Finally she went back to sleep and we waited until she was discharged. Most people think this would be the end of the postictal phase after she'd gotten rest, but now with scientific proofs and advancement, it has now been proven that the postictal phase can take hours to be over or even days! I mean-I've always known that myself as a person living with epilepsy, however when I grew up people thought it only took about 24 hours to recover, and that's not true. There's a little more that happens in the postictal phase and research is finally catching up after all these years. When the postictal phase happens I'm looking at everything from symptoms of the seizure to others associated with mental health, so when Anya came home I was in tune with everything because of what I know it to be for myself, and for the most part I was right to be so highly aware. 

After Anya woke up from her nap to be discharged, she was not okay mentally. She was irritated with the ride service that was set up for us because it didn't come right away, and she even threw her bag down in front of me while I was talking on the phone with my mom. "I'm tired and I'm hurting all over and my head has clouds and they won't go away!" She fussed. When we arrived home she ate dinner and she suddenly became like the energizer bunny. "I feel like 90% now!" She said after eating, but knowing seizures I had to read her a little more and not take her word for it. The more I observed the more I saw that her anxiety levels were off the wall, and she was trembling all over like crazy. I sat with her and did meditation with her for a minute with soft music in the back and it settled her nerves a little, but she still seemed to be slightly on edge. For what it was worth though it did help some of the cloudiness go away that she was feeling in her head. Once we discussed it she expressed to me that she felt sad because she felt like she missed something from having the seizure in class. There was a party planned for completing a book as a class and she didn't get to participate from having to leave to go to the hospital. She continued to show symptoms of tiredness overall, confusion, and anxiety over the weekend, but by Sunday she seemed fine. All she needed was a little time to rest and recover. 

Today when I picked up Anya I had to ask her how her first day back was. I expected that she gave everyone a fright and that the students had questions. She said everyone welcomed her back with love, and that they did have questions. The most interesting thing she said is that the situation even helped one of the students open up about their sister having epilepsy. They even traded numbers and promised to support one another. As crazy as it may sound, this makes me feel great! It makes me feel better that the conversation has started! The last thing I want Anya to feel is shame, so I am glad that she was recieved so well.

Two weeks ago when I was discussing seizure first aid with her teacher, I told her that I would be sending Anya to school with purple accessories for epilepsy awareness month. She asked if there was a way that they could be more helpful, and I brought up the idea about Purple Day in school to bring awareness. I expressed that it wasn't embarassing for me or Anya to let the students know she had seizures, and even that it's okay to be worried about a friend who has a seizure in front of them. We discussed it for quite some time, and we agreed that once everyone was on board that this would be a class event, and possibly make it a school wide event. The irony of Anya having a seizure in class in front of all the students after this conversation took place blew my mind! Since, I've spoken to both Ms. Ford and the school nurse again about making this event. They felt that it definetly had to happen now since the kids have questions. I even created a power point days before Anya had a seizure, and I sent it to her teacher! We are prepared just waiting to make a date for it. Once we do that I'll be sure to update that here. 

All month I've been fighting my own epilepsy but I've still managed to post a few purple items from my boutique on my instagram for purchase if anyone is interested. Link is in the bio as always for easy access to one of our purple bracelets! Click Here to be redirected to my store and purchase this purple bracelet that I made and show your support on epilepsy awareness month for someone you know or love who has epilepsy. You can even buy it for an epilepsy warrior that you know.

If you need to know Seizure first aid or to learn more about epilepsy please go to the epilepsy foundation website at epilepsy.com! To keep it simple think of seizure first aid with the acronym Stay, Safe, Side! 

Before I close I wanted to say that I write blogs like this because it's important to understand that a person may need support beyond the seizure, and beyond the first aid. I see a therapist in relation to my neurologist because there are some things that my neurologist cannot teach me about managing my epilepsy as it relates to stress management. The Neurologists job is to manage the epilepsy, and if my dose needs to go up or down they're there to help, but if I have an increase in stress my therapist helps me with that so I won't have a seizure. Sometimes having a supportive person in your corner to understand what effort you put into maintaining your overall health helps. I write these blogs to help people know how to actively advocate beyond seizure first aid, and it all boils down to how to be a friend in times of trouble. So I hope it helps caregivers, employers, friends and family to advocate with understanding and compassion.