This entry is long, and kind of a downer. I want to share what my experiences were when I first started having seizures and when I was diagnosed with epilepsy, because I think the foundation is needed for this blog. My mum helped me with this, because I don’t remember all of it. I certainly cried while writing it, and when adding additional points that I had forgotten.
Prior to being diagnosed, I played softball and went swimming regularly. I participated in gym class (albeit sometimes unenthusiastically). I played outside, went hiking, went ice skating, did gymnastics, everything a kid would do. I went to sleepovers with my friends and camping with my family. I was enrolled in Girl Guides and went on summer camps with the organization.
I was diagnosed with epilepsy when I was 14 years old, following the first witnessed tonic-clonic seizure. It was determined that I had been having myoclonic seizures for probably the year prior, but I just appeared clumsy and “out of it”. I would drop things, stare off into space, was completely exhausted, super groggy in the mornings and my muscles hurt. Some of these could be attributed to becoming a teenager, so not much was thought of it.
The day after my 14th birthday, I had a tonic clonic seizure in the bathroom and my parents had to bust open the door, much to my supreme embarrassment. The hospital staff wasn’t exactly sure what had happened, and it could have been “just a seizure” but not necessarily a condition. Epilepsy doesn’t run in my family, nor did I have any head trauma that could have stimulated it. Over the next few months, it happened again enough times that I needed to go for various tests (EEGs, MRIs, EKGs) as well as to a sleep clinic. At that point, it was identified that I was epileptic and began seeing a pediatric neurologist. At the time, my main identifiable trigger was a lack of sleep. I predominantly had seizures first thing when waking up. I also experienced an aura, so since I was still at home I had time to jump in bed. Although there were a few more times I had seizures in the shower over the years, for the most part I was injury free. It took approximately a week for me to recover from each seizure.
There wasn’t a lot of information available. The internet existed (I’m not that old), but there certainly weren’t resources online for researching information on the condition. A lot of the information came from doctors, nurses and my neurologist. I couldn’t specify what each one said, but the impression that I got was that there was not much for me to look forward to. Independent living wouldn’t be an option; employment would be a challenge; relationships difficult. It wasn’t a rosy future.
The medications that I tried caused a number of side effects. The first one I tried caused me to gain about 25 pounds in six weeks. I was super clumsy as a result, because that was a big size difference and it was a huge change in my appearance. I lost about 1/3 of my hair. I was tired ALL THE TIME. I went home from school and napped at lunch. I napped after school. I went to bed early. My grades dropped from being unable to pay attention in class.
Some social things stand out from that time. I was in Grade 8 at the time. I had friends. 14-year old girls (and this is a generalization, but does apply to my situation) aren’t always the most mature or compassionate individuals. When I was diagnosed with epilepsy, because it couldn’t be seen (both the condition and due to the lack of physical injuries), the general belief among my peers was that I was faking it “for attention”. In a very short period of time, the people who I had been friends with stopped speaking to me. At a time when I needed support the most, and any semblance of normality, I suddenly had no friends. I was ostracized at school and stopped going to social events (I was too tired to go even if I had wanted to).
As for the school, they didn’t know what to do. At the time, medical conditions weren’t prevalent and school nurses were pretty much trained in broken limbs, falls from the playground equipment or gym class and colds. The teachers didn’t want me in their classes. The teachers tried to deny me going on field trips, including ice skating and swimming. When my parents insisted that I be included, I would go to the swimming pool and sit on the sidelines and write a paper about swimming rather than actually go swimming. There was no support from my teachers or the school, which I had attended for the previous 8 years.
As a side note, prior to my diagnosis, I loved swimming and went regularly. I wasn’t good at it, but it was a lot of fun and I enjoyed it. Watching others do it while having to just write about it was lame.
My parents pulled me out of the school. For Grade 9, I went into a different school system (the Catholic school system) that was willing to accept me, even though I wasn’t baptized. My parents pulled me out for two reasons: because I was so miserable, having no friends and not even being wanted in classrooms, and the way that the public school system addressed my condition with my parents.
Grade 9 was fine, but I hid my condition. I avoided talking about it, mentioning it. I took off my medic alert bracelet as soon as I left the house. Because I was still generally having seizures first thing in the morning, if I took my medication and made it through the first half hour, I would be fine. I associated my condition as something negative, something to be ashamed of. I was still bullied (I was an unattractive, smart and nerdy kid, which wasn’t socially acceptable at the time with other kids), but I was so grateful that it wasn’t about my condition that I didn’t say anything.
High school was very much the same, and I continued to hide my condition. I didn’t have many friends, but there were a select few. Very few people outside my family witnessed the seizures. I tried to live as normal a life as possible, the biggest reason being because I didn’t want anyone to know.
I was afraid, and I was embarrassed. It’s a hard way for any teenager to exist. My embarrassment came from within myself. Even writing this entry, I still feel embarrassment for some things.
Even at the time though, things weren’t so bad. My immediate and extended family was supportive. My parents never made me feel like I was any kind of trouble. If they had times they were upset, I didn’t see it. They stood up for me, and were there for me in a way I didn’t appreciate until I was much older.
And things got better.