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Dear Epilepsy

The model of a human brain used to compliment a letter written to epilepsy for the Dear Diagnosis literary project.

It’s rather tough to decide where to direct my anger. I feel like I should be mad at you directly… seizures are pretty scary. In all honesty, though, learning to deal with life as a seizure-prone man (“man” being used loosely – c’mon, no reason this can’t be a bit funny) has provided me with a world of experiences that have made me a wiser person. I mean, yea, it’s tough losing teeth and breaking bones and having your first driver’s license taken away 6 months after you started driving – wondering if I’ll be alone during a seizure and choke to death on my own blood and vomit; but that’s all whatever… I’ve come to grips with it! And how many can say they’ve come to understand their own mortality by the age of 23??

The medication regimen I’ve been prescribed has been effective, and I’m very lucky to have met wonderful healthcare professionals who really care along the way. For those who are unclear as to what seizures actually are, let me explain: they’re just an overload of electrical signals in the brain. Sorta like a computer getting info overloads and shutting off. And, like most medical conditions, they’re different for different people. That being said, epilepsy/ seizure medications act as dampeners in the brain in order to slow chemical signals in order to stop/prevent seizures.

Now do me a favor and say it out loud, “I take medication, to save my life (hopefully), and they dampen communication signals in the brain.”  Because of these medications, I live in a constant state of fogginess… a mental bog is the metaphor I prefer. I forget things all the time, keeping notes in order to remember things I used to know, such as my parent’s birthdays. I’m as “grumpy frumpy” as a sleepy toddler. I sleep 9 hours at a clip, and still desire an hour’s sleep midday.

So to restart, Dear Epilepsy… you’re ok. But to Keppra and Lamictal… you’re really what’s draining my life, while also saving it. Gotta go, getting sleepy.

Male, 31 years young
Epilepsy, AVM in Cerebellum

P.S. – Many suggest I should consider medical marijuana as a means to alleviate seizures. I’ve tried it. It’s only makes my fatigue worse… and frankly I’m tired of new age folks badgering me about it. A condition they’ve learned a lot about by listening for 13 minutes, while I’ve been working the details out for 13 years. Sorry for that addition. I’m sure I’m just grumpy. Thanks for reading.

Dear Diagnosis Affirmation Key

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2 thoughts on “Dear Epilepsy”

  1. -Update from the author
    This is simply advice gathered from my own personal experience.
    Going back to the original article, I observed how my medicine regiment absolutely drained my energy and made my quality of life…. well questionable to put it mildly.
    However, recently my neurologists suggested a new medication to counter those effects, and I’m happy to report that my life has returned to normal (that term being used very loosely).
    The points I’m really aiming to communicate…
    1 – Trust trustful physicians, and ALWAYS get a second opinion
    2 – Be open to unique therapy options
    3 – I’ve never heard a bad thing about the word Hope. Have you?
    S. O’Connor – Naples, FL, USA, April 12, 2022
    Be well friends 🙂

    1. We so appreciate updates and insight. Grateful to hear that you’ve found relief in seeking second opinions and being willing to try new things – it certainly gives us hope, which is certainly (in the words of Emily Dickinson) a BEAUTIFUL “thing with feathers, that perches in the soul, and sings the tune without the words… and never stops at all.”

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