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.