Recently, after my blog post barking seals, an acquaintance shared her poignant thoughts in an email to me describing her life changing experience having lived with a sister who has epilepsy:
People always tell me that everything will be better someday, or say that they will pray for my sister, expecting it to make me feel better. It doesn't. I used to find comfort in others kind words, but now they feel like empty gestures that people say because they don't truly know how to react or what to say. I don't live near barking seals but every time I hear a loud noise—door slam, book drop on the floor, someone walking with slightly heavy steps on the floor above me—my heart goes into overdrive and the adrenaline pumps through my veins. I no longer live with my sister and parents, and my brain knows that when she is not around, the loud noises are not signs of her falling down the stairs during a seizure. But my body has not made that distinction yet, and still goes into panic mode. It's something that only people with loved ones who have seizures would understand. Even my fiancee, who has been with me every step of the way since my sister's first seizure, doesn't get it. I ask him to walk more gently, don't slam doors ... and he just thinks I am crazy.
Please share.
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| photo by Michael Kolster |
I'm not one of those people who thinks (at least most of the time) that everything gets better. I would say that damage is done, and we're damaged in one way or another as we age. My own sons, growing up with a sister who seizes multiple times a day will, I'm certain, remember it always -- and what you've described is something that we all do, now. If one of them drops something, he automatically says, "That was me!" to allay our fears. It's a weird life, to be sure. However, I would say that while things don't "get better," we are all able to hold opposing things -- joy and grief -- very, very well. That is, in itself a gift, although it's one I sort of most of the time, wish that I didn't have.
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