(This post is part of the Epilepsy Blog Relay™ which runs from November 1 through November 30.)
You know what a new med is like? It’s like hope, optimism, your savior, terror, your enemy, the one thing that can make you worse. This last time, while I was in the hospital, we ditched one med and subbed another. So I’m still on two: One that’s rescued me often enough and one a stranger to my system, my journey, my ache to find better. It’s that indescribable ache; you never know which way it’s going to go- heal or hurt.
What’s awful is the mix of optimism and fear. You can’t help but have your heart skip a beat at the idea of something that may “cure” you, but you’ve experienced so many side effects with false idols before that you’re weary of the promise and opportunity this med “should” bring… You hold your breath, you swallow it, and pray this one “does it” for you… changes your life, your being, offers up normalcy on a golden platter. Predictability on a spoon. 😊
I pray for Briviact to be my savior. I’m at the end; my rope is frayed and I’m hanging in a fragile balance between the very few remaining meds to try and opening my brain to God and whatever the surgeon can navigate. I do, but I don’t, want the meds. Give me several pills before you hand someone a scalpel, stitches, staples, and the control system to my entire body. I don’t think words will ever describe the breathlessness I experience thinking of this new combo’s success and its defeat.
MY success or defeat.
My future brain function… Will I be unable to function in 20 years because of all the damage my brain did to itself when I was younger? That’s my fear. What will I be when my son has sons? How will I challenge my husband when we are on our own again? Why will people want to talk to me when I can’t form a sentence? (Especially since I already feel inadequate holding a conversation lately…) WHO will I be?
That’s why I need a savior. That’s why I desperately want this drug to work. Now. In this moment- when I am a teacher to my son, still fairly early in my marriage, supposed to be young enough (I’m 36) and vibrant. Supposed to be who I was 4 years ago. I NEED TO BE ME.
And Briviact is at the end of my line. I cling so tightly to the quick-witted woman I was before 10 to 20 to so on seizures would hit me in a night because I can’t be defeated. I can’t lose this fight to a blood clot and neurotic neurons.
I can’t continue to lose myself. I won’t. I won’t. I WON’T.
I miss parts of me so much already.
So I pray. Despite the new side effects. I can live with the mornings of uncurling my body and feeling pain shoot through my elbows and shoulders for a few hours. It aches but it aches less. It’s a hurt that’s worth it. If it works.
So when someone talks about Epilepsy and Creativity (which is the topic for this post- didn’t see that one coming, huh? lol) that’s when I say- share your reality. Creativity may draw attention but your voice, your experiences, they form a bond. And that’s what humanity searches for- a connection, whether it’s specifically Epilepsy or a life’s struggle in general, we crave a companion. An understanding. So continue to be creative in raising awareness but realize- often reality creates exactly what you need for you.
It doesn’t take an ice bucket challenge- it takes you.
YOU are enough. You’ll see. 💜
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Your in my thoughts and prayers Megan.I’ve been dealing with this for 30+ years.It is difficult at times and I understood exactly what your talking about.Sometimes I would rather not say anything at all because I can’t get out what I want say.I’m weening of briviact now because it’s not working for me.But,hopefully it will work for you.Take care.