One of the reasons I got into writing in the first place was to get away. First it was because of a terrible childhood, then later it was illness and all the horrors that come with it. Fantasy worlds, science fiction, those were my escapes. I could go anywhere in my head, FROM anywhere. Believe me, I’ve learned to write anywhere and everywhere, from the train to a hospital room. Before I knew how to write, I was already making those worlds up.
I still use it as an escape, to some extent, though it’s less than before because lupus is in remission and has been for several years now. Hooray, right? Well… not quite. For one thing, I also have CNS lupus, which basically means it affects my brain. Trying to write with brain fog is like – hm, walking through a tar pit. Remember how that went for the dinosaurs. Trying to write with confusion from migraines is even more difficult. And knowing just when I’ll have a “clear day” versus an “off day” is anybody’s guess; they often happen at completely random times. Sometimes it’s minute-to-minute, sometimes I’m ok for days, sometimes I’m screwed up half of one day or for a month.
I guess I’m thinking of this today because today the weather report already has a severe weather warning. I can see it if I look out the window; at best we’ll get pouring rain all day, at worst I’ll be sidelined by a tornado or microburst passing by. My rheumatologist is always saying to me, “I cannot change the weather,” because he knows that one of the things almost guaranteed to throw me off is bad weather. I woke up this morning and therefore determined to get as much as I could done before stuff started to hit, and I could then just fool around on World of Warcraft, watch tv or something like that.
I really hate that though. Even though I have a ton of illnesses, from osteoporosis to depression, I still feel guilty if I don’t get something done in a day, to my standards. I’m in a weird place with things; I am at times high-functioning, and then all of a sudden I can do little more than stare at the TV. Focusing on it at those times is damn hard. Focusing enough to write then? Impossible. So… worldbuilding. I’ve done that since literally age two or so, when I started pretending about this world called Rubikia where all my stuffed animals came from. Worldbuilding’s possible at such times; it’s nice and simple for me, and better yet it has order that my brain doesn’t. But… let’s be honest, I’d rather be able to do something else, something more complex. I’d rather not be on SSDI, and have an actual job again, even knowing that I had to stop working at the last job because it literally drove my health into the ground (hence stroke #2).
Where does a person with an illness fit there? Answer: hard to say. Damn hard, actually. Chronic illnesses are still treated by hospitals and often doctors on an acute basis: you break a leg, they treat that. You have a flare, they treat that. But if you have a chronic illness, you can be both high-functioning and sick at the same time.
It makes writing with such a thing a complex issue, as I’ve said. But I’m writing still, because for one thing it keeps me busy, and for another it’s something that’s been inside me all my life. My dream is to manage to get published enough to be able to pay my own way again. Realistic? I don’t know. The rollercoaster that is CNS lupus keeps making that more difficult, but I keep trying.