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What If, Instead of Counting Seizure-Free Days, We Did This?

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I’ve been part of the epilepsy community for the past four years now, and I’ve noticed one prominent, bulging thing: people mark their seizure milestones of a couple months, years, etc.

I think this is great because if you have serious seizures to the point where you can barely go anywhere, this is a huge milestone. You have a new life! There are many young children who have uncontrolled seizures, so when I see the 3-year or 3-month milestone poster for a little girl or boy on my Facebook newsfeed, it makes my heart melt with joy. I just hope for them that they continue in that direction.

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But here’s the thing with me. If I’m, let’s say, one month seizure-free but then have one bad day of five seizures, does that mean I have to start from scratch? I’ve talked to my health professionals, and they’ve deemed me pretty healthy because I’m out and about living my life with ease. Yes. But I still can’t work. See below.

So could we perhaps in some cases focus on the quality of our lives rather than the number of seizure-free days?

As a true perfectionist (not fun, I guarantee you) I feel like I’ve “failed” my health when I have a bad day. So I would really, really like it if people got on board with the idea of quality of living versus a number of days. I’m sick of counting days; I lose track, and people always get disappointed when I say I was a month seizure-free then had a bad day. I also feel depressed from the seizures. So let’s try something new.

woman standing next to a chalkboard where people have written what they want to do before they die

This post originally appeared on Life at Full Volume

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Originally published: August 22, 2015
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