Having a Sibling with Epilepsy
When my little sister was diagnosed with epilepsy in 2002, my world, and my family’s world, got turned upside down - Jamie
At first, it was a shock. A hard shock. Suddenly, we were thrust into a world of medicines and doctorsand specialists and EEGs and video monitoring, and, oh yeah, seizures. That was the hardest part. Watching my little sister have a seizure was nearly impossible for me. I would get enough of an adrenaline rush to make sure she was in a safe position and to call for help, but after that, I would break down. I couldn’t believe my little sister, MY SISTER, was suffering like that. I was angry, I was sad, I was confused. Our family didn’t know what to do.
That’s when my family decided this diagnosis wasn’t going to be the end of our world. In my mom’s words, “If we were going to be in this club, we might as well be the presidents!” My parents and my little sister took to this much sooner than I did. My parents threw themselves into research and doctor discussions and seeking out local groups. They got involved with the local Epilepsy Foundation affiliate, the Greater Cincinnati Epilepsy Foundation, and my sister began to help with outreach. They almost embraced the change, using their struggles to help others.
I, on the other hand, had a big problem adjusting. I mean, this was my sister, snatched from her happy, perky life, and thrown into a crazy, unpredictable world of seizures. Naturally, I was upset. But slowly, as I began to see how much she was advocating, how much she was getting involved, how much she wasn’t letting her diagnosis stop her from moving forward, I saw things differently. I saw that epilepsy wasn’t my sister. She was still the bright, happy, bubbly, little girl that she had always been. She was this advocating, outreach machine, and here I was having a pity party.
The moral of this story is, if you have a sibling who has been diagnosed with epilepsy and you feel angry or sad or confused, you aren’t alone. But at the same time, you can’t let it consume you. I was lucky enough to be blessed with such a caring, giving sister, that it was easier for me to see that. Now, I fulfill my job as the sibling of someone with epilepsy. I support. I advocate. I get involved, just like my sister does. I listen to her cry when she gets frustrated, and I do my best to congratulate her when she succeeds at advocating. So, that is my challenge to all the siblings out there. Stand up. Be a rock. Love your siblings, and remember, epilepsy is not who they are, and you should never, ever make it that way.
21 Comments about "Having a Sibling with Epilepsy"
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