It was brought up in a recent interview I did that I am pursuing my art career somewhat “aggressively,” as the interviewer said. Which is not a negative thing, he was just surprised by the intensity with which I am trying to bring my visions to life, and also make art my full-time career. And while I hadn’t thought too much consciously before he asked me about it, I know why I’m like that. For one thing, I rarely pursue anything halfheartedly; I’m either all in and completely obsessed or not in at all. That’s just part of me being me.
But there is another cause, which I’m calling the Walter White Effect.
Walter White, from the AMC show Breaking Bad… he begins the pilot episode as a repressed, quiet, brilliant but afraid, somewhat henpecked, overqualified high school chemistry teacher. He and his wife have a surprise baby on the way and a teenage son with cerebral palsy. To supplement his family’s meager income, he has a second job a a car wash, which he truly hates. Then he’s told he has cancer and his prognosis is not good. His internal clock immediately starts ticking. He looks around at his life, his family and realizes he will have almost nothing to leave them with if he dies. So he jumps into action. He begins making meth as a way to quickly make a lot of money to secure his family’s future. I’m not spoiling anything here, this is all set up in the first episode. Where his journey takes him is another matter, and is very, very worth watching for yourself. I, for one, am counting he days until we get to see the final episodes of the show.
Now, my plight is nowhere near as desperate as Walter’s is, and a show about my life would be incredibly boring to watch. It would be mostly watching me spend hours and hours and hours editing photos in my pajamas, sprinkled with taking pills, doctor’s appointments, letting Calantha in and out and watering the flowers. No one wants to see that. My internal clock is not as loud or desperate as his, but I do hear it ticking away. There’s no reason to expect that I will get sicker from the ME… but there’s no evidence that I won’t, either. There is just so little really known about it. So I do feel a self-imposed pressure to make as much art as I can while I have the ability to, to further my career as much as I can now so that it might support me when other means of work are no longer options.
We finally have our first official death listed as ME on record. Poor Sophie; I’m sorry that she had to be the one to break this ground. No one really knows how many of us die from ME, since we’ve had such a hard time just getting validation about our illness being real. From speaking with doctors, and what I’ve found out from my own research, we rarely die directly from ME, but it plays a heavy hand in things… organ failure as a result of taking pain meds for decades to combat the ME-caused pain, as an example.
Let me be clear, I do not expect to die soon, and I also don’t expect to get suddenly much sicker and be unable to create. The future is wide open, and I need to embrace it. But I also have to keep in mind possible changes and try to be prepared for them without giving in to them. That’s another thing I can learn from Walter White. He never threw his hands up and decided he was just going to wait for the cancer to consume him. He fought it with every part of his being.
This photo made me laugh, but it does illustrate what I’m trying to say. The future is cloudy. No one knows what will happen. But it’s wise to try and fight against, and prepare for, possible negative outcomes.
So fuck it, I’m making art.
I would deeply appreciate any of you taking a moment to sign this petition to change the name CFS to ME. It’s greatly needed, so a huge thank you to anyone who signs it!