Last night Caitlin and I were watching Black Swan but we only made it half way through because I wrecked the movie by making a ton of noise attempting to fix my printer. I have been feeling just awful, a real hope-shattering never-letting-up torturous horror, and wrote a letter to my doctor trying to explain what I’m going through and advocate my case for adequate treatment, but the printer kept refusing to load paper. Me trying to force it, trying to figure out how to front load and manually insert the paper over and over, canceling and restarting it until Caitlin walked out of the room in frustration. It was only ended when she returned to see me shaking the printer with a sense of futility over my head in the hope that I’d magically repair some trigger switch and she told me that the printer might work better if I removed the paintbrush. So with some sense of shame I pulled out the brush that I’d accidentally and unawarely dropped into its innards and my sad words were eagerly spit out by the now healed printer as Caitlin stomped up to the loft to go to bed.
I hold on to a sliver of hope that this new path of treatment could work because I can feel that there is some overall reduction in pain, but at the same time, because of the slow nature of the drug I’ve lost that up and down that in the past momentarily took the pain away. In a way the severity of pain is irrelevant when it never stops, when you never have a single second that isn’t dominated by agony. Even if that agony is reduced all it means is that it takes a little longer before it cracks past your threshold, and when the pain never ever ends, then you’re always past said threshold. It’s also difficult to hold on to faith in the process when it moves so slowly that by the time you get relief, the underlying disease has destroyed your muscles to the point where you can’t take advantage of whatever new lease on life you’ve been given. When you’re running out of time it’s hard to be patient.
Anyway, it’s been very hard to get anything done but I still am trying to force myself to enjoy life, and remember that as much as I have to deal with this particular curse, I’ve had so many other blessings — and continue to — that I have very little right to complain. I think I have the right to demand medical treatment for the pain and make the appropriate complaints to achieve that, but I don’t have a larger philosophical right to “oh poor me” complain about my life, and I really don’t believe that. I could die today and feel that my life has been a huge net positive. Not that I’m about to, don’t worry. That said, I really want to get over this hump so I can get more active because it’s been hard not being able to do all the things I want to. I did do a little bit of painting, with mixed results that I’m still debating. Much time will still need to be spent here but I wanted to share the current evolutionary point.
As a point of trivia, much of this painting has been done with a syringe. I asked the supermarket pharmacy what big syringes they had and they gave me a fat 30ml one that works nicely for sucking in paint and spitting it out again somewhat like cake icing. That said it contributes to the dated eighties feel that the colours give as well, so yeah, mixed results.
Oh, and I wanted, for any sci-fi fans reading this, to recommend a free download of the Pioneer One series on VODO. The idea behind the show is that a spaceship carrying a young man has crashed in Canada, and it appears to be an old Soviet ship. A note claims that the kid is the son of cosmonauts who have been living on Mars since before the fall of the USSR. To repeat what others have said, it’s “surprisingly well done” for an indie project. That sounds bad and it’s not meant to — I’ve really enjoyed it, and it’s the kind of science fiction that really gets your head spinning and thinking and I’ve been pouring over Wikipedia articles on Mars colonization and spidering out from there. I have always advocated and continue to advocate one way to Mars, “Mars To Stay” type projects. We shouldn’t be “exploring” Mars and then leaving. We should be colonizing it as pioneers. I would welcome the opportunity (and the reduced gravity).
Tangentially, I also got deep dreaming excited as I read about rogue planets, planets in deep space not part of any solar system. According to a Caltech prof with the right conditions an earth-sized planet could exist in deep space with a thick hydogen/helium atmosphere and enough warmth, even without being bathed in the UV radiation of a mother-star, to have liquid water and thus, I suppose, life. What a thing that is to dream about. I like thinking about life moving between worlds, and if I have faith in anything that moves into the minimal-evidence world, it’s in pamspermia. Anyway, I promised Caitlin that I would do some clean-up here today as I’ve been so non-functional lately that I’ve been neglecting my duties, so I will try and do that now.
I have told Nefarious that one day she may have the option to live on other worlds, other celestial bodies. I do hope that I live long enough to look up into the night sky and see the dark parts of the globe of the moon dotted with the lights of cities. It seems so magical to me, and I wonder if one day children will be born to whom this fantasy is the mundane. I hope that great change for a broader and exciting future continues to be the experience of every new generation.