When I was 16, I woke up one morning at the hospital. The rush of cold air when the ambulances’ back door opened made me “come to” and I remember sitting up on the gurney and needing to throw up. The paramedic gave me a tray and the whole arrival emergency crew at the hospital had a front row for my vomit. I didn’t care. I didn’t care that I was in my pyjamas with no bra or underwear. I didn’t care that my makeup from the day before was smudged all over my face, with the worst bedhead possible. I didn’t know at the time, but if I had realized, I wouldn’t have cared that I had wet myself. All I knew, was that I had an INCREDIBLE headache, every muscle in my body hurt, ones I didn’t know I had at the time were even sore, and that I was exhausted. I just wanted to sleep. Forever if possible.
There was a huge bustle around me and multiple doctors rushed in and out of my room. I’m sure lots of tests and procedures were preformed, but I hardly remember any of them. I still didn’t even know what happened to me, I was just trying to sleep.
My mom was at the hospital with me and I was discharged near dinner time. My mom drove me home and I slept straight through until dinner the next day, when I finally felt a little more like myself. That’s when my family explained what had happened to me, at least as best as they could since the doctors had sent us home with no answers.
N had woken up to get ready for school and since I had my Biology diploma that day, she knew I wouldn’t be up at the same time. While she was brushing her teeth, she heard some strange noises coming from my room, and came to check. That’s when my 12 year old sister walked in on me having my first (that I know of) Grand Mal seizure. She freaked out (rightfully so) and ran to get my mom who was still asleep. Once my mom ran down and saw me, she had an idea of what to do, since she has some experience working with special needs children who would often seize. She turned me on my side ( so I didn’t swallow my tongue, which wasn’t as issue since it was clamped firmly between my teeth) and had N grab a phone to call 911.
Apparently the firefighters were the first to arrive about 5 minutes later and according to my mother (who exaggerates pretty much everything) it took 5, VERY hot firefighters to hold me somewhat still and inject an anticonvulsant to try and control the seizure, which at this point had been going on for at least 15 minutes, plus however long before N heard me. Once the “very hot” firefighters got the seizure under control, the ambulance arrived and I was taken to the hospital.
My only memory of this whole thing? Going to sleep after reviewing for my diploma, and then puking when we arrived at the hospital. Followed by two days of a liquid diet because I had chewed up my tongue so badly, and a week of such stiff muscles I felt like I was gonna be buff just from that one seizure lol.
Then my life consisted of doctor after doctor after doctor. Test after test. Years of this, each one saying the same thing… We don’t know what caused your seizures, we can only attempt to control them. In the meantime, I’m continuing to seize, while the doctors try this medication and that medication. But of course there’s different side effects to each one. Sure, this one was depression, this one was hair loss, then, as my luck would have it, the medication that works the best? Weight gain. Story of my life hey lol. Weight gain as well as trouble perspiring. Something about the sweat glands being affected, I dunno I wasn’t paying attention all the time. Either way, now we’ve found a pill that will slow down the seizures, at the cost of my weight. Which I learned to be ok with, because hey, seizures kill and I’m lucky to be alive right. Besides, I can always work out and keep the weight off.
Wrong. Working out was ridiculous. I could hardly do anything I used to because I would overheat in 2 minutes. My body doesn’t sweat because of the medication now so I can’t cool down and every time I tried working out, I almost passed out instead. So, like I said, I’ve learned to be ok with my weight, because the alternative could be my life.
My mom tried so many other things to try and “cure” my epilepsy. I’ve done the chiropractor, acupuncture, some colonoscopy (no idea how that was supposed to help but my mom was trying) a naturopath, both in my city and the next on over in case he was better. We started going on a road trip once a month to the naturopath and my parents spent so much time and money on trying to solve my “medical mystery” but the biggest investment came when my mom found a specialist in the states she wanted me to try.
At this point I’m almost 20, living on my own, and my mom is still trying to make this go away. She found some clinic in Wisconsin or something like that, that had a new trial they were doing, and she thought it had potential. So she asked if I would fly to Chicago with her to try it out. I figured that, at this point, I would give it a shot, but I told my mom it would be the last experiment I would try in regards to my epilepsy. I had it reasonably under control with my meds and didn’t want it to consume my life by way of always trying to fix it. The meds for me, were solution enough.
My mom thought that was a fair deal, and booked our mom/daughter trip to Chicago.
Oh the Windy City. We were literally only there for 3 days. Most of which were spent in Milwaukee or something close by. But after all the test were done at the hospital, we did manage to go to the Blue Man group (remember this trip was planned by my mom) and the Chicago Art Institute. Which I’ll always remember, because I saw some real life paintings that I had been studying in University and I felt real posh being able to recognize them 😂. But, the end result of our trip, were just the memories. Because the doctors there, just like in Canada, were unable to figure out my issue.
Maybe my mind is just too advanced for modern technology. Or maybe I’m just built wrong. Either way, I never ended up having to write my Biology diploma, so that’s one good thing I can take from all this!