“You know very well who you are, don’t let em hold you down reach for the stars.”

This post is dedicated to all my peoples living in the struggle, for each and every one of you who have ever experienced the misfiring of electricity in your brain that has left you feeling alone and confused, left you bruised and cut, without the simple freedoms in life that make it worth living, don’t worry you aren’t alone. You know very well who you are, don’t let them hold you down, reach for the stars. 

I know, I know, it’s been a long time and I don’t want to hear any bitching about the year-plus it’s been since I’ve updated. Every time I’d sit down to update about where my life was I’d just end up crying my fucking eyes out, so  the laptop sat away for months a source of pain. All I could think was that nobody wanted to hear about how seizures were wrecking my life, and how nothing had changed, AND in fact for a bit things on the seizure front got worse – I had a monster stay in the hospital last summer that resulted in family drama, redonkulous medical bills (that I’m just adding to the enormous fucking Kilimanjaro-sized pile), but DID lead to answers about where the seizures might be coming from.

Catamenial Epilepsy

Catamenial epilepsy is a subtype of epilepsy, which is a chronic neurological condition characterized by recurrent seizures.[1] Catamenial epilepsy is a subset of this population, which includes women of whom their seizure exacerbation is aligned with their menstrual cycle. Women with catamenial epilepsy are unusually sensitive to endogenous hormonal changes.

MOTHER FUCK!

Who has a giant floral feminine uterus tattooed on her thigh? Yep, this girl. Psychic much? So, the past few months have been finding the balance between birth control (to hopefully help regulate periods and hormones), anticonvulsants, mood-stabilizers (because you need those on the mind fuck that is anticonvulsants) and every day is a constant balance between wanting to cry, wanting laugh, and wishing the next seizure I had would snap my neck and leave me dead.

I’m sorry if that’s kind of jarring or too honest but sometimes I wake up next to my furry miniature schnauzer Manolo and I look at him and wonder what cosmic lesson is to be learned from all of this and I just cry hot tears that soak my cheeks. I may not of been the most sucessful person in the world when the seizures started but I was on my way and I had some momentum, now I feel like I just stagnate. When I feel this way I try to stay busy, to keep my mind from screaming at me that my brain is defective and that I’m useless but nothing seems to work.

What seems to compound these feelings is that my 29th birthday is right around the corner and with another year fastly approaching I take inventory and it’s just a crap-shoot. I remember being so excited about life and now I wonder what the point might be? And I don’t think it gets any better or not for some bitch with epilepsy.  The only reason I’m probably still here is because I don’t have a bottle of sleeping pills to Anna Nicole myself to sleep with.

I’ve been trying to think of ways to make money, selling off clothing that’s too big,   sewing, make up. But everyone wants something for nothing and nobody cares about anyone except themselves, so I haven’t been making a lot of money and business is difficult.

I was talking to my Mother on the phone a few days ago, she let me know an aunt of mine was in SoCal with my cousin who is a semi-pro skateboarder. So I texted her to send love and wish him luck, I was met with a barrage of texts about how they couldn’t see me and were too busy. It wasn’t my intention to try to get in their mix but it did add to my feelings that even family could give a fuck about you and what you’re going thru. And this is very indicative of what I’m feeling in my life right now, I find myself retreating into my alone time a lot, in my room with my dog and my thoughts trying to keep to myself.

If you don’t know, now you know.

Cherish those small freedoms and rock those BIG statement pieces!

What is freedom? How many of you are sitting at your laptops or scrolling on your smart phones and have no idea how free you really are? I will admit, I had no idea just how much freedom I had two years ago so dont take my question to be completely condescending, please. This morning I sat at looked back at a few of my older entries on this blog, and I couldn’t help but smile to myself at my total lack of self reflection on the subject

Now, don’t go thinking I’ve completely lost it, though I am totally close to the danger zone in that aspect. While my sanity is constantly in question my life is constantly about perspective these days. Yesterday I was standing in the kitchen making a salad, while chopping greens I started to feel strange, a combination of dizzy/woozy and slightly nausious. I closed my eyes momentairly and placed my hand on my forehead and saw a rainbow of purple shades. I made my way to the living room and sat forward on the couch with my head resting on my knees, my sister Tabetha recgonized my odd behavor and stange faces and questioned me about the pause in my salad making. She suggest I sit back on the couch and rest, the next memory I have I’m waking up on the couch sweaty with my hair in my face trying to catch my breath waking up from a seizure with my brother-in-law Tim ensuring I didn’t choke or hit my head on anything. 

This is the first time I’ve ever had an aura, hopefully I’ll continue to have auras. When people have auras they are different in each person with epilepsy, some people smell strange things, I’ve read articles about patients smelling bacon or flowers, I have a girlfriend Amber who sees yellow halos of light shortly around things before she has seizures, and auras aren’t always present before all seizures, so its kind of a guessing game. SURPRISE! Blah. At the time, and post-seizure I wasn’t particularly excited about it, Tabetha was ready to throw a party. Hopefully what this means is that maybe I’ll be able to have of a warning system and wont be falling out all over the floor and busting my ass and bonking my head and having more traumatic brain injuries ontop of being epileptic. Cool, I’ll take it.
Being epileptic has taught me that people are stupid. Two things you need to know, my brain might malfunction but I'm not retarded and I have an excuse for my brain damage WHATS YOURS?!

Being epileptic has taught me that people are stupid. Two things you need to know, my brain might malfunction but I’m not retarded and I have an excuse for my brain damage WHATS YOURS?! :P Don’t forget your sense of humor.

Baby steps to freedom or small freedoms. I’d love to not fall down and have bruises all over my body and my face, if I could get past that these seizures would be manageable, maybe I could go back to working regularly. I would cry tears of joy that could fill buckets if I could have a semi normal life again.
Man, Betsey is still a real insperation. Keep kicking ass!

Man, Betsey is still a real inspiration. Keep kicking ass!

I’ve been drafting patterns and getting back to my inner seamstress, keeping up with NY Fashion Week and really trying to remember who I was before the seizures invaded my life and tried to take over. I’m NOT letting them! I try to remember strong women like Betsey Johnson who inspired me to be a fashion designer when I was 5. I would watch E! before it became the huge network it is today, and they used to play fashion shows on saturday mornings, I’d wake up and before cartoons I’d watch the fashion shows on Fashion TV. The first time I ever saw a Betsey Johnson runway show is permanently etched in my brain, there were tall models strutting down the runway in GIANT jeweled gingham circle skirts with big stacked platforms and at the end of the show Betsey ran down the runway with her orange hair and did a cartwheel. She was a free spirit and at 5 years old in my PJs with my Barbies I wanted to be her when I grew up. Years ago when she was diagnosed with breast cancer, she said it was important to enjoy life more so I’m trying to take a page out of her book and not work myself into the ground while making my dreams happen. I can’t have an empire if I’m dead now can I?

“Heroes are made in the hour of defeat. Success is, therefore, well described as a series of glorious defeats.” -Gandhi

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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.

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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.

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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.

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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.

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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.

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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.

Hey, epilepsy, eat a dick.

True Story, Stay SCHEMIN!

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To Gain a Little Perspective.

I cant begin to explain the video blog above, fresh from the shower I felt compelled to “speak” to my friends and family and to give an update about where exactly life has taken me on this crazy convulsion filled journey. I know that there cant be rain clouds every day and fight to stay positive that life will settle and I will find peace. Please listen to my crazy ramblings and allow me to share with honesty the perspective I have on the world today.

Love you all, deeply, keep pushing forward and fight the good fight, I’m in your corner.

-B

Ohhh the joys of epilepsy.

The most important thing I’ve learned since becoming “epileptic” is to shed the magical notions I had about being in control of my own life. Now I’m on other peoples time table, I’m along for the ride instead of planning the adventure. Every moment I take to reflect on the changes that have been forced on me over the last year, I lament for the way life was before I lost control over my body.

Is this my life lesson on how relinquish control? If so, I hear you loud and clear universe, you have my attention and I’m listening.

I’ve had 2 seizures in as many months, and the world feels fuzzy but I’m trying to stay on the positive side of things and live in the moment.

Easier said than done.

I’ve started taking enrollment for my make up application classes, if you’re interested email me here: Bianca.L.Ward@gmail.com and I’d be happy reserve you a spot.

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The progress made in 1 year, never loose sight of how far you’ve come because you’re too busy looking to find where you’re going.

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Last trip to the ER.

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Pick Up Your Panties!!

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PostSecret

Every Sunday morning I check PostSecret.com to remind myself to make my own way, to live without fear, and to take risks that make others feel uncomfortable. I will live FREE of my FEAR.

Take life by the nads y’all, if you need back up I’m here.

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