Bianca visits the crazy house, and lets go of her ego.

“My ego’s like my stomach it keeps shitting what I feed it….”

When I was in art school I orchestrated this interactive art piece, where I set up a camera and left friends, family, co-workers with a list of cultural questions, the idea was to break down a subculture of  los Angeles, and I of course in my lioness fashion wanted to figure out a way to make the project like nothing that had been done before. Really, I didn’t want to work in a group, and I wanted to do something on my own, so my professors let me do the project on myself, but gave me parameters to make the project objective. What came out of this semester long project were a few thing I never expected, I saw the way my peers and family really saw me, and as the film played across the giant glass painting that accompanied the piece, I turned the project into a process piece, having my classmates take pieces of paper or fabric and write notes about the ethnography as this song echoed thru the film in the background.

Years later this song is still special to me though for different reasons. last month I was having a difficult time, though I was sewing, and exercising and trying to stay active, making an effort to see friends, I had been sinking deeper and deeper into depression, and making efforts to talk about it where I could. I checked myself into a mental health hospital after planning to commit suicide, many things had lead up to this moment. I received my denial letter from disability, had my first panic attack, was really going thru it and having a hard time processing it. At first I was going to keep this to myself, I felt this was a private matter, and that it was really no ones business but after marinade on it I’ve decided to let ego go, and I want to let everyone out there know that you are genuinely not alone.

I realized in the hospital that every person in there is the same, is suffering the same, and needs support. If you are hurting don’t be afraid.

<p><a href=”http://vimeo.com/111928471″>Demistfyingy mental health, my trip to the crazy house and more fun with epilepsy!</a> from <a href=”http://vimeo.com/user34468692″>Bianca Ward</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

 

“….Because falling’s not the problem When I’m falling I’m in peace It’s only when I hit the ground It causes all the grief…”

These days in life I’m not sure how I’m supposed to feel. I constantly cycle from being depressed to angry to lost to confused to totally dumbfounded that this is my life and I am helpless to pump the brakes and stop the seizures or the oceans of emotions that care not for my preparation and continue to crash down on my emotionally and physically drained ass.

I’m trying desperately not to become embittered by life, after all I have no control over how the cosmic “chips” fell and previous to the seizures was always singing positivity wherever I traveled. So why are there days that it’s so hard to be positive? I try to remind myself how far I’ve made it, then small voices in the back of my mind remind me that I haven’t made it that far and as a nearly 30 year old woman the days are ticking away until your parents are gone and you truly are alone in this world with no help.

One of the most difficult daily tasks in my life is finding the self worth. At this point in my 3 year old journey with seizures and convulsions I have stopped working, anyone who knows me personally knows I am a go-getter who found real satisfaction in being able to work towards my own independence in life. I sat in a meeting last week with a psychologist in interview for help from disability, he asked me how my life had changed since becoming epileptic? I talked with him about trying to hold it down and working as long as I could, how horribly defeated I felt when I finally gave it up, like I had to finally give up the notion that I was no longer normal and that life really really wasn’t going to fall back into being the same. I talked with him about constantly trying to brainstorm ways to make money so I don’t feel like such a fucking burden on every single person in life.

Everyday I take 6 pills in hopes that they’ll balance out the crazy in my body. Last night I had a seizure in my sleep and woke up on the floor with the contents of my purse stuck to my face. Later in the day walking into the house I had another and hit my face on the stone entryway, my face hurts and I slept most of the day with my dog, crying and cuddling with my shark stuffed animals. I feel like most of my family does I’m sure, I never get a break.

I made a film years ago when I was in college, where we had to study a culture or subculture and make a cultural ethnography on that culture, in true Bianca fashion I picked myself (don’t ask lol). I set about gathering data by having friends, family, co-workers fill out a questionnaire and sit in front of the camera and read their answers. What followed was a beautiful film and interactive art piece that played at the same time. One of the questions in the questionnaire as prepared by my professors for all students was “What or where is this cultures sacred/holy place?” What amazed me is that in most of my interviews the subjects made some reference to my mind being sacred to me. Isn’t it amazing? Even when you think people have no idea who you are, they sure as fuck are paying attention. Today my brain, this mind it is the only thing I have.

What is there to do? Like all women I share chromosomes with, women like Dorris and Gypsy and Mabel, keep fighting, just keep going and love as much as you can even when you don’t want to.

“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