Learning to navigate a life with epilepsy is tricky but manageable. A time to learn more about a disorder that affects so many people. A time to get educated. The new motto is Quiet No More. I like it. In truth those three words are what prompted me to tell my story.
It was at a Montreal hotel. My high school graduation. A beautiful event. We had a great time. We stayed up all night. There was no alcohol or drugs involved, just fun with my friends. We went to bed at six in the morning. We woke up four hours later to get ready. Check out was at eleven. I felt awful. I dragged myself into the shower. I was so tired I had to sit at the bottom of the tub. I must have been in there for a while. One friend spoke to me through the door, telling me to hurry up.
I dressed and left the bathroom in search of my belt which was on the bed. The last thing I remember was reaching for it. I fell on the floor and had my first full-blown grande mal seizure. One of the girls called 911 immediately. I remember hearing the voices of my friends, wanting to take me to the hospital. I was semi conscious at that point and clearly said no. I had no idea what had happened. My friend Liz told the ERT’s she would take responsibility for me and informed me directly that we were going to the hospital. Period.
I was in and out of seizures in the ambulance. I remember hearing the siren and thinking how loud it was from the inside. I remember I could hear every sound in that ambulance. It was like having bionic hearing. I could hear Liz call back to me that everything would be okay. I think she was trying to convince herself of that too. Still I convulsed. I remember the speed of getting out of the ambulance and it felt like we were racing through the hospital doors. Then more convulsions. Then blackness.
I woke to the sound of my mother’s voice. She sounded scared and angry.. She seemed was arguing with the doctor who mentioned they were testing my blood for cocaine, the seizures are similar and they wanted to rule out everything. I was a straight-edged kid, so no drugs for me. My mother knew that. She told the doctor of course ” My daughter doesn’t do drugs.” I’m sure doctors hear this a lot. In my case it was true. My mom asked for more tests. I remember hearing the term ” In Status” which was later explained to me. I never realized how life threatening it was.
I had an iv, with something called Phenytoin which had made the seizures stop, it was the first thing they gave me and it worked. I slept then for a long time. I would hear lots of voices. So many people came to see me but I have no memory of them visiting. One friend brought me a stuffed animal and years later asked if I still had it. I couldn’t remember her even coming to see me. Apparently I hung on to that little animal for dear life. My eyes were black so black from all the broken blood vessels. I had a racoon mask. I was so sore. Muscles ached everywhere. It hurt to breathe.
After an EEG and an MRI. The results were that I had epilepsy. From out of no where. No on in the family to our knowledge had it. Sure I’d fallen a lot as a kid but not hard enough cause this. I had to stay in the hospital for a few more days. I needed to sleep, to rest. When everyone left, the hospital was so quiet I did not sleep.
I thought of this new thing. Epilepsy. What would it mean? How would it change things? What eighteen year old wants to go around having seizures? Everything contracts when you have a seizure. So I could picture myself out with friends, and I have a seizure, what if my bladder was full? Would I pee? Or worse? Not something that was acceptable to me.
I refused to accept this was what was wrong with me. I was normal. When I left the hospital with a new prescription in hand I also left with the wrong attitude. It was then I started to go out with friends. Indulge in alcohol which has a counter effect on anticonvulsants. I stayed out way too late, woke up way too early for work. I was eighteen and legal at least in Canada. For years my refusal to believe something was wrong led me to more seizures. It took its toll on me. I was in my twenties when I had my last seizure. That one woke me up.
I thought long and hard about where my life was going. My neurologist had informed me that some people stop having epilepsy as mysteriously as they start. That wasn’t the case with me. I would have this for life. For life. I began to realize that could be a very long time to keep resisting. To keep wanting an ordinary life for myself. I needed to make peace with this. To stop hating what it was. To accept it as part of me. My epiphany was understanding that hating my epilepsy was hating myself. All these years I spent acting like I deserved better than this.
The reluctance to accept my situation made it even worse. It was time for a change. This was my chance. My chance to take better care of myself. My chance to forgive whatever reason this happened for. My chance to learn more about epilepsy. I began to see the positive side of things and not live with the negative. I learned to handle situations better. I learned there were things I could never do, like go swimming alone. It would be foolish of me to ever assume that nothing could happen. I began to make plans. I wanted my license but had to be seizure free to have it.
Over the years I attained the goals I set for myself. I got my license. I am seizure free. I married and had four beautiful children. My pregnancies were high risk but everything went well. I had long talks with my neurologist about why my pregnancies were good. I mentioned to her once that it was so strange that I would start that time of the month right after a seizure.
The doctor believes I have a rare form of epilepsy called catamenial epilepsy. It’s related to my hormonal cycle. It could be why I was fine with my pregnancies. She thinks I may have a hard time as I get older and menopause starts. We will see. I’ll cross that bridge when I come to it.
I still have my moments where I worry. What if? What if I’m alone with the kids? What if they can’t handle it? I can’t go there. I have to believe that they will know what to do. I’ve shown them. I also have an aura so I know when one is coming. It gives me a little time, not much but enough. I have to see that as a positive thing too. I still get questions from people. Can I swallow my tongue? If they are with me and something happens do they put a stick in my mouth. Yeah Hollywood hasn’t helped epileptics. And the epileptic jokes well we won’t go there either. I’ve heard them all. This is the month to make people aware. Get informed. It’s not that hard to do.
It’s been nineteen years since my last seizure. I know it could come back at anytime. I live my life to the fullest. I know my triggers are lack of sleep. Gone are the days where I can watch the sunrise and get four hours of sleep. No I can still see the sunrise but then I need to get at least eight hours of sleep. Compromises. When I was younger there were no compromises. I just wanted an ordinary life. My life with epilepsy is alright. I think of all the things I would have missed out on if I had stuck to that path I was on. Why want an ordinary life when an extraordinary one is so much better.
Stay Positive and Pampered