More of the same.
The past 19 months have left me feeling less like a hero and more defeated than ever before in life, and while I try to sit back and have perspective about life over this nearly 2 year convulsion filled journey it’s difficult to see through the ER visits and endless experimental pills to find that nugget of hope thats apparently floating around out there. If we’re talking about becoming a hero in the hour of defeat, we’re talking about 19 months of defeat, thats an average of 730.5 hours in a month, so, if you do the math thats about 13,879.5 hours or so of defeat spent on all this epilepsy bullshit. Really? REALLY? 13,000 hours of my life wasted on ambulance rides? Being sedated? Unconscious? Immobilized? Bruised? Sore? Suffering brian trauma? PTSD? Let’s talk about that fun spinal tap? And still no answers. At this point I’m-if you cant tell-I’m over being sad and depressed about being epileptic and my freedom being drained from my life and I’m angry. I’m angry that all this hustle and all the work in life that I so feverishly fought for over the past few years has been in vain.
It’s taken me a long time to find myself, to find my voice, and to become confident in the woman I wanted to be, it might of actually taken becoming epileptic to finally say no to a lot of the bullshit in life. I don’t think anyone is immune to crazy in life, and despite trying to minimize drama somehow I’m like blood in shark infested water for crazy.
What the prep for a spinal tap looks like.
When I first started having seizures they we’re relatively far apart, nearly six months between the first and second, now they are closer together and have decided to hover around my menstrual cycle. The newest development in this epilepsy adventure are these fun cluster seizures I’ve been experiencing – it’s like a party except not at all. We’re talking 20 seizures in 19 months, medical bills at this point are just stupid. Isn’t it ironic that a girl who has spent her whole life trying to ensure she’s not treated like an animal at the zoo feels like a bird in a cage? I wish I had wings, and no, Red Bull doesn’t really work, kids.
Shaved hair don’t care.
I have always had this feeling like I don’t have a lot of time to get things in life right, I’m not entirely sure why; it could be the fact that I have older people in my family and have the drive to prove that I can be successful before they aren’t here any longer, or I just feel the need to be a super achiever, or it could be that I’m Bianca Ward and its my curse. But the point is that I’ve finally accepted that I cant work, in the middle of the holidays I went back to personal assisting and had a seizure at work, and it was very clear that I wasn’t to be back in the workplace. If you could see me right now you could see me giving my laptop two middle fingers in frustration for not being able to stay seizure free long enough to keep a 9-5. Or being able to drive, which I understand, really I do but its one of the things I really miss most in life, over all my other freedoms.
I feel like I’m on crazy pills. -Mugatu
They’ve also found this phantom brain tumor, one of my amazing gay friends Michael tried to cheer me up by telling me I was so fabulous I couldn’t even be blessed with a normal brain tumor. In theory its funny and totally true, I mean, how many incredibly haute fatties do you know like me? Only 1, and I have epilepsy and some sort of phantom stupid tumor from too much pressure in my brain and lots of sneakers, and I mean lots.
We’ll get by.
It’s not that I expected life to be effortless, but I didn’t expect it to be such a battlefield, I feel like it’s raining down pills and assholes….opps, did I just say that out loud? Yep. Assholes I can deal with, its the pills I’m not so happy about, I feel like with the medication its a toss up, some mornings I wake up happy and smiling and some mornings I wake up with a weird filmy veil over the world. It’s been more of the gritty dirty days it seems lately, trips to the ER and mornings cuddled with my dog and my stuffed leopard shark. Why all the honesty? Because thats all I’ve got. I love you all, I promise to keep fighting, even when this shit leaves me feeling wounded.
I’m trying to get back to the things that make me feel like a real person again, I’m sewing, or trying to sew again. Starting small, check my signature neon and black and white.
“At the end of the day my momma told me dont let no one break me, at the end of the day no one ever could stop me, you cant regret it if you were trying because I’m walking with the heart of a lion….”
Hey, epilepsy, eat a dick.