It all went down because I borrowed my mom’s carpet shampooer, and I used her noxious cleaner. (Our house is normally a low chemical zone – I’m a baking soda, vinegar, organic, kinda girl.) A few minutes into the cleaning, I started getting lightheaded. I didn’t realize in that moment that I was already in the seizure. Somehow I grabbed my medicine, and a phone, even though I don’t recall making a point to do so. I wandered out to get fresh air, I felt like I was shuffling through a chemical cloud. The smell of the cleaner was so overwhelming that my brain felt like it was choking.
I went to a semi-shaded area of the yard, and although it took a long time of staring at the phone, not understanding how to work it, I was eventually able to hit redial which was my parent’s work number. At that point, of progression, all I could say was, “It’s happening! It’s happening! Get Dan. Get Dan.” I was unable to hang up the phone, and could hear them scrambling to find their cell phones. I could hear their panic, their dialog. Then I heard the dead dial tone beeping. I remember closing my eyes, and for the first time during a seizure, I started praying. I prayed to the rhythm of the beeping. “Thank you for my life. Thank you for my life. Thank you for my life. Thank you for my life.” All in all, it wasn’t a short episode, but by the time I realized that it was okay to relinquish control, that I was fooling myself by trying to command a different outcome, I just stared up through the semiopaque leaves, observing the rays of sunshine between, while tears streamed down the sides of my face.
When I’m in a seizure, I never know how bad it will get. I’ve had all sorts: absence, petite mal, semi-partial, grand mal. Depending on if I’m able to get my medicine and ice water, or a little sugar, it can escalate quite quickly.
They always start in my right hand, and climb through the right side of my body. As it spreads, there are checkpoints in my mind, that signal different levels of severity that I recognize in those moments. I will think to myself, as I’m trapped, unable to control my body, “Oh no, it’s spread. Oh is that my right leg? Shit. Shit. How bad is it going to get? Is this going to crossover? Am going to have another grand mal? Should I try to roll on my side so I don’t choke if I vomit?” And sometimes, like this last episode, I couldn’t move my body at all to roll, to protect myself. I had to submit to the reality that everything was out of my hands. In times like that all I can do is hope that I won’t wake up in the hospital, which has happened.
One boundary is my right shoulder. If the seizure spreads past my shoulder I know it will spread down my whole right torso, and right leg. If it makes it up to my clavicle area, I know it will go all the way to the right side of my face and then skull. For me that’s a 4.5 out of 5 alert, with a 5 being a grand mal. Those are the whole body attacks – both sides, and I lose consciousness. Fortunately, I’ve only had two, and by fabulous miracle, I didn’t pee my pants either time, which is quite common for those types of convulsions. So, I’m at a 100% dry pant success rate. Small but happy victory!
I did not lose consciousness with this seizure, however I did blackout for the hours afterward. I don’t remember Dan taking me to bed, or whether or not I woke up and talked with him about what happened. Maybe I even slept all the way into and through the night, I have no idea.
Seizures are so crazy. It’s as if my body gets possessed. I have no control. In those moments, I feel like I’m a puppet. It manifests as a physical aberration, and can end with a total brain fry, loss of consciousness even vomiting, urination, defecation, and injury. So far, I’ve been able to have Dan drop my pants so I didn’t wet myself. I’ve vomited during/after the seizure, and have yet to poop myself, and hope I never will. It’s all quite unpredictable, and I don’t assume anything.
Legally, at this point, I could drive, but I’m too scared to do so. I’ve been walking or jogging when I needed to get stuff, or to meet people, or graciously they come to me, and Dan just picked up a bicycle pump for my tires, so I’ll be on my own set of wheels very soon. Don’t worry, I’ll start slow and be careful to not induce a seizure while riding. I actually didn’t ride a bike for a few years after I started having seizures because the movement was seizure inducing. Once I decided to say screw it, I can’t live in fear, we joked that we were going to put adult training wheels on as an added security measure. We never did, but I like that we still have the option if needed.
When you’re living with active epilepsy, you have to find creative ways to continue to live your life and have fun doing it! The last two weeks have been good to be homebound, I’ve moved all of our furniture, we switched bedrooms, I’ve gotten creative with my cooking because I couldn’t just get to the store whenever I wanted, or at all unless Dan was around. It’s amazing how lucky we are to be mobile. I’m soon to be beach-cruising around Edmonds, rain or shine. I’ll have to plan extra hours to do the same thing, like get to the grocery store, or added time to get to appointments. I’ll need to learn how to attach my bike to the front of the metro bus bike rack, which is intimidating, but not the end of the world. It certainly won’t stop me!
This is a whole new world of adventure. I may have dialed back on speed, but a forced change of pace may just be what I needed.