For those of you who keep up with my regular writings, you’ve probably figured out that I’m a positive person. Epilepsy, and life in general, presents all sorts of hurdles; I like to overcome them with perseverance and joy. But lately, I don’t feel like overcoming them…and when I do, it’s not with joy. I feel like having my very own pity party.
For our March 2017 Epilepsy Blog Relay, I wrote an article for this website about being thankful for epilepsy. It has influenced my life in so many ways and I am honestly grateful for the positive things it has done in my life. But right now, I am the furthest thing from thankful about epilepsy.
My Pity Party
I hate having epilepsy. It has reared it’s ugly head and beaten me down with its role in my life. I hate having to take so many pills in one day. I hate the side effects that those medications cause, leading me to be constantly exhausted and taking even more pills to counteract my AEDs. I hate that my memory is seemingly non-existent and causes me to forget even the most basic things. This is a constant interruption to my life. I’m pained at the fact that I have now developed stress induced episodes, which limits my ability to do my job as passionately as I would like. It also holds me back from applying to other jobs out of fear that my brain couldn’t handle them.
I hate having epilepsy.
I hate that my loved ones worry about my well being and are on alert for any abnormal behavior on my part. It’s a vigilance that, once it has begun, it will likely never end. I hate having to quell fears that someone has when I first tell he/she that I have epilepsy. I hate the fluid stream of emotions that having a disorder comes with–anger, fear, confusion, worry, frustration, sadness, the list goes on and on.
I hate that I don’t remember a “normal” life, one free of medication, free of requiring a long list of specialists to pilot my life, free of constant concern for my health by myself and others, free of restriction both physically and mentally. I hate that I have no option for a cure, only opportunities to make epilepsy management easier, but never really to make it go away. I hate it and I want it to go away.
Yes, I know that there are many, many others in this world who are worse off than I am. I know that I should be thankful for the AEDs that exist, in my abilities despite my epilepsy, and that I have such wonderful supports around me. If you talk to me on most days, I do hold these positive beliefs. But days like today, I wish I could rewrite my story.
I wish I could form my story to be one of ease through getting an education, to one where my personality develops without the “Kepprage” and is wholly me. I’d spend no money or time on prescriptions and specialists, but instead invest in opportunities and experiences. My parents would get more sleep at night and my friends wouldn’t have to keep watch for my safety when we are together. My story would be one of success, instead of success with an asterisk next to it, denoting that I have epilepsy which impacted this success. Did it impact it in a positive way or negative way? Well, you’ll have to use your imagination for that one. Sure, I may be successful, but how much more successful could I have been if I didn’t have a steep IQ drop due to my seizures. What else could I have accomplished if I didn’t have to devote so much time to sleep? What could I have learned over my lifetime if I had a fully working memory? How would my self-confidence be different if I hadn’t been bullied for years? Where would I be in life? No one can answer that.
I know. I know I cannot go back in time and change events. I know that epilepsy has also had a positive impact on my life. And I know that no matter how I look at it, my epilepsy is not going away. So, this is when I rely on my supports that I mentioned earlier, to love me and my whole self through the days I struggle. I rely on you, my epilepsy community, to remind me that life is not all bad with epilepsy. And I rely on myself to ultimately pick myself up, put one foot in front of the other, and move forward with my life. At the end of the day, epilepsy has impacted life in good and bad days. The only way to get through the bad days is to focus on the good.
This ends my pity party. I will pack up my tears and half-inflated balloons and get out my party hat and confetti. I will celebrate that I have a life, one that brings joy and love. I will remind myself of the good that exists here and get back to appreciating my life, epilepsy and all.
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.