Wednesday, May 28, 2014

Black Hat: The Film

"Desperate to get to an anime convention halfway across the country, a quirky teen artist “borrows” her sister’s car, kidnaps her wily, black sheep grandfather and together they embark on the road trip of a lifetime."

This is the official description of Black Hat, the movie that writer/director Robbie Bryan is making. But to me, Black Hat has another description; Cassie's legacy. 

Let me tell you a few things about my daughter. Virtually every other parent of a child with EB or person with EB can tell this story. School administrators who don't understand and want to put your cognitively normal child in special education classes. Peers who won't sit next to them in class. People who talk to your teenager like they are five, because they are smaller than average and are in a wheelchair. People who won't shake their hands, are afraid to touch them. Salons that won't cut their hair because they might be contagious. Restaurants that ask you to leave. And on, and on. It's a painful story of shunning those we don't understand, of assumptions and fear over education and love. 

But my Cassie, my beautiful, brave girl, had a level of self assurance and self confidence that I often envied. Cassie wasn't brave because she lived with EB; that's just how the dice rolled for her. She was brave because she refused to be treated differently, she loved who and what she loved and was completely unapologetic about it. She was herself, always. She bowed to no one, and never compromised her beliefs or passions to conform. She shunned normal. She embraced her identity as an "otaku", a fan of Japanese animation and culture. 

Through this love of anime, Cassie found her tribe, the people that would love and accept her exactly as she was. They were the outsiders, the odd ones. The nerds, the geeks, the kids who sat alone at lunch, the kids even their parents didn't quite understand. They dreamed of transformation, of worlds where the fantastic happened, they built elaborate, lovingly detailed costumes of these characters they idolized and wore them to conventions where they could all live in this world together for a few days. Accepted, embraced, understood. And Cassie loved it. She found her calling in this world of anime and cosplay when she was not even 10 years old. 

Cassie at Con-Nooga, age 10

And this love was not just a passing fancy. Cassie continued to love anime and cosplay with an unrelenting passion through her entire life. We attended anime days at the library, MechaCon, Louisianime, Comicon. She collected figurines and mangas and even as EB stole her fingers, curling them down into stumps, she drew hundreds of pictures in the anime style, especially her beloved "magical schoolgirls" and her goddess, her idol, Miku Hatsune. She dreamed, in a world where she was as healthy as she was intelligent and tenacious, that she would go to Japan and attend art school, that she would draw mangas that would earn her the money to open an animal sanctuary. 

So knowing these things about Cassie, imagine how I felt when days after her death I met Robbie Bryan through a mutual friend on facebook. Robbie, who just happened to have this script about an "otaku", a girl so much like my Cassie, who loved anime, who was ostracized for looking "different", who wanted to create art and be proud to be herself. It was almost enough to make me believe some larger force put him in my path. I knew, down to the bottom of my being, that Robbie was offering me the opportunity to share Cassie's story, Cassie's life, and have it not just be about her disorder, and about her pain and suffering. Not just this fragile little butterfly girl. That was only one part of Cassie's identity. Through Black Hat, I could share the things Cassie loved; her passions and dreams, her confidence and spirit. Not just her afflictions. 

So for me, this movie is not about Cassie's disorder, it's about her identity. About how I want her to be remembered. Not as a sick little girl. But as a girl who called herself a gamer chick, an otaku, who was proud be be called a geek and a nerd. The girl with pink hair, the girl who told me "Dai suki" or "Aishiteru" at bedtime instead of "I love you". My girl, who I am so incredibly proud of, who I owe a great deal more than allowing her to only be remembered as the little girl with EB. This movie will allow her to be remembered for the things SHE chose, that SHE loved, the identity SHE embraced, not just for the genes handed down to her by her parents. Because Cassie was never a victim of her DNA. She wrenched her identity, her self worth from the mangled hands of EB and never let it be taken from her. And I think the world just might deserve to know what an amazing young woman she was because of that. 

Saturday, May 10, 2014

Behind the curtain

This will probably be the hardest thing I have ever written in my entire life, second to sharing the news of Cassie's death. It's hard because my friends have so much faith in me, and have told me over and over again that they know I'm strong enough to get through this, that I'm handling it so well, that they're proud of me.

I want to preface this by emphatically stating that I am not suicidal and have no intention of harming myself.

But I have fallen into the deepest, darkest pit of depression that I have ever experienced. I am on medication. I am getting what help I can given my lack of insurance. I will not harm myself. But I have a lot of trouble caring enough to get out of bed every day, to eat, to interact with people. I have anxiety attacks when the phone rings. I have a lot of trouble even forcing myself to drive a couple of miles to the store when we're out of milk and toilet paper. I am not really a functional human being at this point. I think of Cassie literally every waking moment. I have replayed the moments of her death in my mind thousands of times. I cannot force the images from my mind. The only respite I get is sleep. So I sleep. 12, 14, 16 hours a day sometimes. I am not parenting my son as I know he needs. After paying off Cassie's cremation, medical bills, all of our overdue utilities, expenses for the memorial service, and then moving, while feeding a growing teenage boy, I am completely broke. I should be looking for a job, but I can barely make myself shower. I have been informed, as gently as possible, that the horrible condition of my broken and discolored teeth is going to be an impediment to my finding professional employment. I haven't had a job in 18 years. I can't leave Walt alone for more than a couple of hours at a time because he can't remember not to microwave silverware and not to leave the house when I'm not here.

I had big plans that I would be able to travel to Canada this summer so that Marcia and I could get married. That's not going to happen, for financial reasons.

This time last year I had four loud, silly, wonderful teenagers under my roof. My foster child went to live with his grandparents, my nephew went home to his mom, and Cassie is gone. Walt still needs me but not in the way that Cassie did. While that's probably a good thing, it leaves me feeling useless. The only thing I've ever been any good at, taking care of children, my children, I'm no longer needed for. I feel completely adrift, like my entire reason for existing is gone. And I don't have the energy to fight to make things better. I just want to sleep, because that's the only time that everything doesn't hurt.