As much as it chagrins me, I cannot possibly do all the things I want to do. I cannot eat all the kinds of food I want to eat. I cannot spend my time the way I choose. It’s not just that those things I have to do are unpleasant or not my first choice. Some of the things I have to do will actually harm me in small and large ways, but I have to do them. At least I do, if I want to stay off the streets and not spend my elder years in a state institution.
I have to go back to work, today. Back into the new year, back to the office, back to the daily sensory insults. The smells, the noises, the interruptions, the obnoxious overhead lights. Back to the people who are nice enough, but are pretty much clueless about how to be decent to each other when it really counts… and who are also deeply unhappy in their lives and their jobs and are like little black clouds of lingering despair in the otherwise partly-sunny-partly-overcast skies of my life.
Sigh. I’m not helping myself much with my attitude. I need to perk up a bit and get myself in order. Where cheery positive motivation fails, I need to exert some discipline. Get up, Trinity. Get up.
It sounds harsher than it is. Discipline, for me, is simply doing what’s necessary, regardless of how I feel about it. It’s about sticking with a routine, a program, a standard way of doing things which I know works, which will (likely) produce the results I’m looking for — or that just need to happen. It’s about character. The ability to muster willingness to play my part, even if that playing injures me in some way. We all have to play our parts. In my world, it’s non-negotiable.
Discipline allows me to get out of bed, despite sometimes crippling chronic pain that pulls me down. It allows me to keep functioning, despite a pulsing headache that intermittently feels like a spike has been driven into my temple. It keeps me on point, on track, on schedule, in a world that frankly doesn’t much care about me, but will sometimes respond to my consistent efforts with results I’m hoping for.
It’s the “little” things that keep me going… like a steady income, a house of my own, health insurance, a reliable automobile to get me around, decent real food that’s not processed into non-nutritive existence, and the acoutrements of a life I can live with — books, books, and more books, along with an internet connection and discretionary time to actually read and think.
It’s not a perfect system, by any stretch. I spend a fair amount of time in physical pain, anxiety, sensory insult, overwhelm, exhaustion, foggy thinking, and frustration that things aren’t turning out the way I hoped / expected / planned / worked for. But it keeps me on track. Discipline keeps me on target.
Reading what I’ve written, it sounds a little sad, I have to say. All that time spent in discomfort or downright distress. Huh. Seems a shame. At the same time, I’ve developed a personal (spiritual?) practice that helps me continue to live my life — and very happily so — despite all the crap in the backstory. Discipline, combined with an intense focus on what I want to focus on, what I want to experience, what I want to put my energy into… not the incidentals around me which could easily conspire to make my life terribly, terribly
See, for me, I mostly just accept the fact that life is deeply unfair, that it’s painful, awkward, infuriating, confounding, and at times humiliating and dehumanizing. I accept the fact that I can’t do everything that everybody else does, or even everything that I want to do.
There are times when back pain won’t let me bend over to pick something up off the floor. So, I use my toes to pick stuff up. Or I get a yardstick or some other implement to get that thing off the floor.
There are times when I can’t go outside, because I’m too tired to deal with the sunlight and shadows and the people who I might run into. So, I stay inside and use the time for other things I love to do.
There are times when I am so wracked by fear and anxiety, I can barely breathe… but I can’t get out of doing the thing that’s pushing me to the edge. So, I treat it like a practice session for keeping my sh*t together — I suck it up and get on with it, using every tool in my possession to just get through the coming minutes or hours of “adulting” that promise to wipe me out and turn me into a zombie for the next week.
By Wednesday afternoon, I’m pretty much done for the work week. I’m tapped out, wiped out, with precious few resources left. So, I do my impression of a person who’s awake and enjoying her life, and I get through the last two days of the week the best way I know how.
And I count it as a WIN, if I get to the weekend without becoming a miserable partner to the love of my life. And then I check out for Saturday. I only do the things I want to do then (oh, except for taking the trash to the transfer station and cleaning and doing some of the non-negotiable chores that must be done, no matter what). No, come to think of it, I rarely get to do only the things I want to do on Saturday. I still have to eat — and that means I have to shop and cook.
The thing is, I don’t get to decide how my life is going to go, all the time. I’m not sure when / how American society got to a place where that even became a goal. When I was growing up, you dealt with life on life’s terms, and if you had difficulties along the way, you used it as a training opportunity to improve, to better yourself, to learn and grow and develop discipline. In the world I grew up in, if you had physical difficulties, you did your best and then asked for help after you exhausted all your internal resources. If you had any challenges at all, you dealt with them yourself, and you only asked for help if you were completely, 100% unable to deal. I’m not saying that’s how we should all be — just that that’s what shaped my approach, my philosophy, my direction. And for better or worse, it’s actually helped keep me functional and participating in a world that seems hell-bent on wrecking me, no matter what.
So, all this being said, I have to pick and choose my battles. I’ve got difficulties, yes. I’ve got serious challenges that sideline me, yes. But I’m not consistently disabled enough to realistically expect anyone or anything to help me. I’m on my own, basically. And I have to save my energy for the things that matter most to me. The things that I care about.
I’m inundated on a daily, hourly basis, by crap that I don’t care about, or that has a directly negative impact on my life. It’s deleterious, to be frank. And I have to protect myself. I have to focus on what I can do for myself, by myself, so I’m not dependent on a world that couldn’t care less, whether I live or die. If anything, the world seems pretty intent on making sure I do die. To which I say, Fuck you very much. Go away and leave me alone to live my life in all its fabulous glory.
I care whether I live or die. I care very much. And I’m bound and determined to make the most of what I have, regardless of what the government, bullies, trolls, or ignorant non-autistic types have to say (or do) about it. They can go do their thing. They will do their thing, whether I agree/approve or not. But it can’t ruin my peace of mind or what I’ve worked so hard to build in my own life. I’m picking my battles carefully, this year. I have been for years. That hasn’t changed. But especially with the incoming US government… yah, it’s time to up my game just a bit.
I can’t go into overdrive so much that it wipes out whatever energy I have in store… but I need to tweak my self-preservation just a bit. Consciously. Deliberately. Intentionally.
Picking and choosing as I go.