Man, sometimes it’s hard to do the right things.
I work really hard at energy conservation. That’s a funny sentence right there: “I work really hard at energy conservation.” A total oxymoron if there ever was one, but anyone who’s been ill for any extended period- ever have mono?- you know what I mean. You have to save up for when you need your strength. People frequently use the Spoon Theory to get this idea across. Want to spend time doing anything physical? You know you’ve got to take the beginning part of your day easy. You have to dole out your energy as though it’s a physical, tangible good. Sometimes this can be tricky. Sometimes it involves complicated schedule arrangement: I can go out to a show on Friday night, but I better remember that’s happening because I’ll have to taper off my schedule for a few days beforehand. That’ll be a late night, and if I’m going to be awake, social, and alert enough to drive home, I can’t be doing “normal me” stuff for about 3 days beforehand.
It isn’t impossible, but I’m still relatively newish at this, in the grand scheme of it all. My diagnosis came through in 2009, and I didn’t really get it for a few years after that. I fought it for a while. I still do, because sometimes this just doesn’t work. There are occasions when life kind of happens all over me and I have to roll with it. That’s life, for everyone. You just do the thing.
The other issue is simply the stress of energy conservation. If I save here, what am I missing there? Which corners do I cut? There really isn’t any true winning: it’s sacrifice no matter which way you slice it. Everyone has to slow down eventually, of course. I try to frame it that way, which helps at times. There are other, worse days when I look in the mirror and remember that I am not, in fact, 75 years old, and that even if I were, I have friends in their 70s who are more active than this disease allows me to be, some weeks. Those days are not so great.
It’s easy to simply slip into a sneaky hate spiral from this place: FORGET IT I HATE EVERYTHING I AM NOW A SHUTIN WITH MY MILLION CATS SOMEONE TURN ON MATLOCK ALREADY AND THEN GET OFF MY DAMN LAWN. And I have days that feel that way, I won’t lie. I’ll watch too many home restoration TV shows while knitting on my couch and loathe every person who turns down perfectly good houses because they don’t like blue walls and grumble to my dog about the people who paint over original Craftsman woodwork because SERIOUSLY, WHAT KIND OF MONSTER EVEN DOES THAT. It’s okay. Everyone has piss- poor days.
Every so often, taking a day to sit and be with my feelings, even if they are ugly and scary and look a lot like “oh my god is this time forever will I never feel okay again I’m afraid I will never stop hurting this is scary and I am so tired and it makes me so angry why is this happening and why can’t anyone fix it,” that’s immense and frightening and absolutely necessary. Those feelings are huge and terrifying, and it took me forever to be all right with just being in the room with them. They are uncomfortable and so, so ugly, you guys. They are so goddamned unbecoming, my rage and impotence and just stark fear about this disease. I am afraid. I am angry. And that’s okay. I mean, it’ll never be okay, but it’s okay to feel that way, and it’s okay to take a little time to be ugly with those feelings.
The important part is learning to take that damn day, and then taking it. You have to take that day, when the pain gets to be too much or when there’s a relapse; if you don’t stop to acknowledge these emotions they start to rip at you from the inside. So you stop, and sit with them, but then you have to just get on with the rest of it. This part isn’t brave, or inspirational, by the way. There’s not a goddamned thing that is heroic about this, so if you’re beginning to wander down that path, please, do me a kindness and don’t. It’s just life. It’s just the life I get- and it’s the life lots of people get. While I’m taking that day to deal with the crapfest of feelings my bizarre body has dealt me, life just kept trucking on, and I’ve got to pick up the thread and catch up. My life is very average, despite the whole artist studio angle, and involves mostly picking up animal hair (in all aspects, it’s just a shocking level of never- ending fluff of all sorts), and outside of my marriage, it’s rather unromantic.
I tried—- for the longest time!—- to wriggle away from all of this. I think so many of us do something similar, whether we’re dealing with physical illness or troubles of other kinds. I can just work harder. Work longer. Work more. Run more. More pushups. Yoga. Write. Something, anything. Complicated meditation, anything to keep away from it all, but in the end, it always comes down to finding silence, stillness, the small things. I think I pushed myself into at least one relapse, doing all that avoidance work. We are such funny, sad creatures. It is both easier and harder to face things head- on.
My instinct has always been to attack any problem: anything can be fixed by simply working harder. In application, this has proved true roughly 70-80% of the time, and I suspect I might have a higher success rate with an improved concept of work—- and an improved concept of what a solution might be, too. Simply putting my shoulder to the wheel isn’t always going to cut it, that is the thing. Sometimes “the work” is in the sitting, in the being, and in facing even the ugliest of things. I am not made of glass, even though there are days when I feel as though I am a box of nails and broken glass inside: I’ve been around long enough to know that my emotions won’t kill me, I just don’t enjoy feeling them. That’s fine. I can face my own fear and rage and grief and yes, even my own absolute powerlessness, and I will still be here the next day.