doing the right thing

I know as soon as I say “book club,” the regular readers will be expecting a tirade about inanity and ignorance, or better yet, a new and even stranger suggestion from this week’s butterfly gauntlet. But as much as I hate to let people down, I’m afraid this post isn’t going to be like that.

A friend I hung out with over the weekend told me she was looking forward to seeing me at book club again Wednesday night. I’ve known her for a while, but up until lately, we’ve never been close. Recent and somewhat similar challenges in both of our lives have drawn us together, though, and I didn’t want to let her down by not going. I softened the experience by having dinner with her beforehand. We joked about the dimwitted feedback our conditions tend to elicit, even as we prepared ourselves for a new onslaught of misbegotten medical advice.

But there wasn’t any of that last night. Part of the reason was that there was a business meeting afterwards (from which I excused myself) which took a lot of the butterflies out of play. Still, the rest of the gathering wasn’t really all that different than the other ones I’ve attended recently. A little more pensive, perhaps, but it was the same group, some of whom I know, and some of whom I’m just starting to get to know.

The book we discussed talked about change; specifically, about how when we set ourselves to fixing one thing about us that we’ve decided we can no longer live with, we come to find out it’s only the tip of the iceberg, and that a lot more fixing is going to have to happen before we’re through. It struck me as much more relatable than the last few readings have been. Personally, I felt as though I knew exactly what the author was talking about.

It’s not uncommon for us to, at some point in our lives, realize that a certain behavior or attitude we used to rely on is no longer serving our better interests. We decide we are going to buckle down and change that one behavior or attitude, and we hang all of our misery and frustration on the shoulders of it, certain that once we change it, or excise it, or turn it around, everything else in our lives will get better. But no sooner do we manage to get a handle on it and start manipulating it do we discover that that one thing is attached to many other things, and those things are all attached to even more other things. We realize that if we pull too hard on the one string, everything we think and feel about ourselves, even the parts we like, will come completely unraveled.

Some people get to that place and stop. It’s too terrifying to move forward into the unknown; it’s simply not worth the risk. Better to just leave everything alone and hope it all settles back to where it was before. (I suppose that might actually happen, sometimes.) Those people go back and tie a few knots, make a few compromises, and do other retrofixes to keep the whole thing together, and then leave the rest of it the way it is until some time in the future when they’re “ready” to deal with it.

But sometimes, it’s too late to go back. Other times, life does the rest of the pulling for us, whether we want it to or not. And for a lucky few, the thought of going back to the way things were is so painful that we go ahead and yank it ourselves. And sure enough, the whole thing does unravel, and we find ourselves in a very cold, very dark place. Nothing is what it seemed. Nothing is familiar in any way. Even the ground beneath our feet begins to drift and pitch.

We’re quickly overwhelmed by sadness and anger, and frustration at our inability to make any use of the new order of things, and often, our inability to see any order in the new things at all. Why in the hell did we have to get rid of that old thing? It wasn’t all that bad, was it? What we wouldn’t give to have it back! And why did we have to lose everything else with it? Why does life have to work that way? Why does it leave us with a giant, gaping hole and nothing to fill it? It seems recklessly unfair, needlessly cruel.

We do a lot of fighting, clawing and grasping at anything we can lay our hands on, whether or not we like it, or even want it. We so desperately want answers. We want explanations. We need to know why life is so painful; particularly, we need to know why our lives are so painful. Anger becomes rage. Sadness becomes despair. We begin to suspect that the rest of our lives will be spent in this black and chilly place.

But once we’ve been there a while, the winds begin to die down. Slowly, almost imperceptibly, we start get used to it. We gather what we can and put up a shelter. We stumble across a padded chair and drag it over, and gratefully sink into it. We begin to make small mental adjustments, maybe I can deal with this little thing, and maybe that one, too. We come to see there’s no point in clinging to the last remaining threads of the old self, and finally, with grief and a newfound resolve, we allow them to slip away.

And when the last one has disappeared, we are surprised to discover that a new self is waiting underneath. A better self. A stronger self, a more grown-up self. We find we do like the new self better than the old self. We could live with this self. This self does seem to fit into a good life, if a different one than what we thought we wanted. And once we make that discovery, and accept it, we turn around and see that the place we’ve found ourselves isn’t dark at all. It’s full of light.

Book club wasn’t any different than it ever was last night. But I was.

This little fable implies that my journey to a more peaceful place was only moderately difficult, and that the darkness didn’t persist for very long, and that all in all, it wasn’t all that bad. Nothing could be further from the truth. It’s been devastating, and I am forever changed, and not all for the good. I like where I am – mostly – but I fervently wish I could have gotten here some other way. I hope other people can find a way to get to this place without having to first traverse such a deep, dark abyss.

It’s not the unrelenting physical pain, but the psychological pain that has left these deep, gaping wounds. I’m still mourning the complete unraveling of my old life. It still hurts to think of what I’ve lost, an ache sunk into the core of my soul that may never completely subside. And while it’s true that I have lately been able to move past my doubt, I haven’t yet found my way to faith.

But I’ve stopped fighting.

I heard a particular lyric for the first time earlier this week. It went: “not equating death with stopping.”  It’s in a favorite song of mine, and I’d always thought the lyric was, “not equating death with starving.” I’d never really understood it, but I assumed it meant something to the songwriter. But for some reason, as it was playing on my iPod this past Tuesday, I distinctly heard the singer say “stopping.”  The p sound separated itself from the rest of the syllables and pattered out the speaker like gravel onto concrete.

I don’t know why I honed in on it. It only happens in the song once.  I’ve [mis]heard it a million times and never paid much attention to it. But it stuck into me, like a splinter under my skin, for hours and now days after. I looked it up just to be sure of what I heard, but I’d heard it correctly.  “Stopping” is, in fact, what the singer wrote. Not equating death with stopping. And just like that, I understood what it meant.

All this time, I was afraid that if I stopped looking for answers, stopped pushing back, stopped being angry, stopped being afraid, stopped hoping, stopped writing, stopped doing something just to be doing something, stopped anything at all, that the weight of this tragedy would overtake me and I’d drown in its bottomless, sucking well. That if I stopped splashing, people would forget I was in trouble and stop trying to rescue me. That if I stopped chasing it, everything I thought about the world and myself would disappear.

But I didn’t drown, and no-one stopped trying to help me.  And I don’t need rescuing any more. The world isn’t like I thought, and neither am I, but the well isn’t, either. It’s not as deep as I’d feared. I just needed to stop thrashing long enough to let my legs drop so my feet could touch the bottom.

I just needed to stop.

I wasn’t ready before. I couldn’t have stopped before I needed to; I had to need to, I had to feel there was nothing else left that I could do.  And I don’t know how I got to that point. I wish I could tell you. I wish I had some shining bit of wisdom, a deceptively simple key that opens a spiritual door to peace that I could offer to those still shivering in the dark. I did “x” and it happened. Well, I did do “x.” But I did all of the other letters of the alphabet, too, and a bunch from some other alphabets, and even a few I made up. I threw everything I had and anything else I could find at this. I had a seemingly endless stock of ideas about how to fight this thing, and I ran through so many I lost count, and I had no intention of stopping until I’d tried every last one of them.

But finally, not too long ago, I realized I was getting tired. The fighting was consuming me and everything around me. It wasn’t that the injury had taken everything in my life away, although it took a great deal. It was that in pursuit of trying to figure out how to screw a handle onto it and label it and maybe even fix it, I’d let go of what little I had left. I had – I have – such a small supply of energy that I didn’t have an ounce to spare for anything else.

And so, after that last doctor’s appointment at the end of August, even though there were a few ideas still left on the shelf, I walked away. And I didn’t drown, or disappear. And as it turns out, it’s freed up a bit of energy to spend on living. Not a lot; nowhere near what I had before all this happened. But more than nothing, and even a little is a significant improvement over nothing.

I have enough to turn my focus back outside myself again. Enough so that when I see a friend talking to someone I don’t know, I gimp on over and introduce myself. Enough so that when someone wants to tell me about her own experience with pain that lasted a few days, I can express genuine sympathy instead of poorly disguised bitterness. Enough not just to reach a hand out to the world, but to not bat away the hands that reach out to me.

I remember begging, screaming at God to tell me what the right thing was to do so I could do it. If I could just get some direction, any at all, that would be enough, I cried. I sobbed and shouted. I pounded the walls, the floor, the furniture. I threw things, and broke things, and hated things, and hated myself. And eventually, I finally exhausted the considerable supply of angst and anger I had built up inside of me and collapsed, deciding that if no-one was going to tell me what to do, then I wasn’t going to do any f***ing thing at all.

But sometimes, that is what the right thing to do is. Nothing.

It’s important for me to stress that I’m not all better. Not physically – that’s just not going to happen – and not psychologically or spiritually, either. There is a sadness inside me now, a disillusionment. What I feared the most has turned out to be true; life is not fair, and the world is not a safe place. But it doesn’t feel like weight. It feels like strength. I went through this, and will go through more, and I made it. I’m alive. I’m OK. I’ve become that positive, calm person that used to infuriate me so much.

But I’m not going to brag about my trophy. I don’t have one. This isn’t a race, and I didn’t cross any finish line, just a mile marker. I still think it’s a wretched, needlessly agonizing way to learn lessons (not that I’ve exactly made a habit out of doing it any other way), and I know, from Momma Ape’s journey, that once you’ve done this kind of serious damage to your body, you’ve compromised a certain integrity that you can’t get back. My frame is bent, I’m never going to be as road-worthy as I was before, and there are more potholes ahead. Other pieces of my body will break down, too, exhibit A being my left shoulder. Furthermore, I’ve been at this way too long to imagine that whoever is running this show has suddenly decided to stop throwing curve balls just because I’ve surrendered to my…

To my what? I don’t even know what to call this any more. I say “injury” but an injury happens and then it’s over. This has been a life-eating ordeal, and will continue to challenge me, possibly if not probably, forever. It just happens to have gotten easier to deal with, now that I’m accustomed to how the weight is distributed and which way the wheels go, and have figured out the easiest way to harness it to me so I can drag it around. It’s not just an injury, or just a disability, or just chronic pain. It’s not even just a condition, although that’s probably as close as I can get to describing it, in a word.

It’s a part of me now, fully assimilated, almost as though it was there all along. It fits better than I thought it would. But it isn’t that it changed shape to fit me. I changed shape to fit it. And now, everything and everyone else around me fits better, too.

How about no longer being masochistic
How about remembering your divinity
How about unabashedly bawling your eyes out
How about not equating death with stopping…

-Alanis Morrissette “Thank U”

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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