The Butterfly and the Bus
It’s 3:30AM, but I’m not awake from pain. I am awake because of an inconvenient rush of chemicals, some due to hormones, some due to my brain thinking it is very clever and that despite conventional wisdom that eight hours of sleep is not a luxury item but a baseline for healthy sleep, some due to a generalized emotional battle in my psyche between a sense of anxiety and excitement. And partly I am awake because I have lost the ability to tell the difference between a butterfly and a bus.
Monday I went in for a physical therapy appointment at the hospital. I have been seeing a therapist there who also happens to be the head of the department, and my first visita month ago felt much like my other visits there: largely I felt unheard and shuffled off quickly to other things, and I swallowed (mostly) a lot of despair and rage that my body was getting worse and once again I felt like no one really gave a shit. But I played along and went to hydrotherapy, which at first helped a little, then actually hurt quite a lot, and then sort of helped a tiny bit, but meanwhile everything I’d initially gone in for had gotten worse, and I was still taking more and more drugs, and so I went back in to the non-water therapist, but this time I took Dan. I told him I wanted to make sure I was heard and that I needed him to turn into Butch Pharmacist if need be.
I’m not sure if it was Dan’s presence or what exactly that triggered the shift, but the shift happened. It might have been the fact that I cried. It might have been the fact that I came back and asked for more help. It might have been Memphis. (Sorry. That was for Dan. It’s like a hug to him.) All I know is that I did not get shuffled off. I got a TENS unit. I got validated like all hell. And I got more appointments and a better plan, and this Monday I got told in the best way possible that actually, honestly? A whole shitload of my condition really is in my head, but not in that condescending way I had been fearing doctors were trying to tell me.
It was actually quite funny to watch him try to tell me that and acknowledge it was a lot like a slap at the same time. He was extraordinarily careful, and before he said "this is in your head" he trotted out a sheaf of charts and literature and pictures and had me make a special appointment so he could take the time to explain exactly how this happens. He drew diagrams of nerve functions and active potentials and what normal bodies respond like and how mine is very likely responding. He explained, carefully and respectfully, what nerves can and cannot do and also explained what the brain does do and what it does but we have absolutely no freaking clue why or how or even the full extent of what, actually. And he explained, maybe, a lot of the mystery of how I can hurt like hell but register on no MRI, of how my neck muscles can be tight and painful with no tissue damage, of how hypermobility in my knees can turn the simple act of standing a little too long into an excruciating experience. AND he explained that studies have shown that simply explaining this to chronic pain sufferers can help aleviate some of their pain.
With the caveat (and apology) that fibromyagila both does and doesn’t fit me and really is a diagnosis he hates, he explained one function of what it and any chronic pain can do, which is teach the brain untrue things about pain and/or lead it to make bad judgments about potentially painful experiences. He didn’t phrase it this way, but it’s like my nervous system has developed PTSD. Not my psyche (yet), but my brain itself. He described it as saying it’s like I have stepped off the curb and twisted my ankle, and it hurts, but then I look up and see something coming down the street toward me, and my brain makes a judgment call to get out of the way—and suddenly the ankle is good enough, at least, to get the hell out of the road. Two seconds ago I honestly could not walk, but suddenly I can get out of the way, because there is a bus coming. The nerve cells in my ankle had transmitted the sense that something had happened to my ankle, and my brain knew what twisting an ankle could do, and it felt it and saw it and made the decision to feel pain. The muscles agreed: this is painful. Systems shifted, and the brain made the decision, in part, to limp. But then the eyes and ears said, "Hey, something’s coming," and then the brain realigned: yes, the ankle hurts, but man, a bus is really going to hurt, and the muscles which were simply strained a moment ago, muscles which hadn’t had a chance to properly chat with the brain and explain the degree of injury (which was why the injury at this point was largely assumed)—well, these muscles were really, really needed now, and the brain gave them what they needed to get the body across the street and away from the bus.
This is what the brain is supposed to do. The nerves don’t feel pain, or hot, or cold. They just feel. Nerves say, "Ting!" or, "ting!" or, "TING!" and that’s it. The brain has to suss out whether that was a feather or a frog or a finger or a fuselage. The nerve is just ting. But the brain does a lot of things, and a lot of what it does, as much as is currently known anyway, is a mystery. Very recent studies, though, have begun to discuss how when the brain perceives pain for a sustained period of time it can begin to make incorrect decisions about perceived pain. This is where "it’s all in your head" comes in, but those five words alone are as helpful to a chronic pain sufferer as "get over it" is to a patient with depression or anxiety. This, as the Wee Free Men* would say, takes serious hiddlins. This is where that nerve buzz and active potential thing comes in, because the long story long is that my brain has, as much as we can tell, decided it’s best the nerves just hum right below that active potential line and react like everything is a potential threat, because as far as my brain can see it may very well be. There is no law, no logic to the condition. There have been a few diagnoses, but they don’t make sense. Nobody comes in and explains the progression of the disease or the root cause. There is nothing to hang anything on. There are little things here and there, but a lot of this stuff just happens, and a lot of it contradicts the other. This isn’t even chicken and egg anymore. The chicken has been slaughtered and the egg scrambled and at this point my brain has picked up the machete, because in the absence of a plan or an explanation, it has decided the best defense is to be Fucking Ready. The bitch wants to bring it? Fine. It will too.
But now this has become, probably, part of the problem. I step off the curb and twist my ankle metaphorically a lot. Daily. Lots of times daily. And that’s not normal, and my brain knows this, and it is freaked out. And in this freaked out state, everything that comes at me looks like a potential bus. My shoulder starts to hurt—fuck, the computer will make that worse. So will sleeping. My hip hurts. Can I walk? Should I sit? Should I exercise? What if I exercise wrong? What if this actually is some weird diesease after all? What if I haven’t gone to the right doctor? I don’t know—should I go to Mayo Clinic? Or is that a waste of time? Should I take the drug now, because this might get worse? Am I inventing this? Am I just being a baby? Am I right that no one is listening to me and helping me, or are they right and this isn’t a big deal? But why does it hurt if it’s a big deal? And in the meantime, I walk around looking normal, and most of the time I don’t show any pain at all, but I hurt, and it makes me tired and anxious and cranky, and nobody understands, but it gets worse and worse and where will this lead? What will this do to me? What happens to someone who at thirty-six is this broken? What happens when she’s fifty or sixty when people really do start to bitch about pain? Why is this happening? What did I do to deserve this? Why will nothing help? What am I missing? Where am I going? What should I be doing? What should I be not doing?
BUS! BUS! BUS! FUCKING BUSES FUCKING EVERYWHERE, ALERT, ALERT, ALERT! BUUUUUUUUUSSSSS!!!!!
Yeah. The brain is part of the problem.
And this is why I have spent the past few days since the therapist explained this to me mostly being mad. Relieved outwardly, and I’ve talked about it out loud and in emails with a few peple as a positive thing—which it is. It is possibly a watershed, and it’s a watershed I want. It is the best way out or way of management I have yet been given, and best of all, it makes logical sense. Thursday, Friday, and Saturday my hip hurt. A lot. Saturday afternoon it got worse. I was scheduled to go to a concert wtih that night, and so I worked hard to get better. I took drugs and used the TENS unit and wore sensible shoes. While we stood I worked hard not to lock my knees and made sure I kept moving and shifted around. I put my purse on the floor so it didn’t strain my shoudler. I did knee bends during breaks, for crying out loud. But it was still standing for a lot longer than I should have, and by the time the act I had come to hear came on, over half my focus was on the pain. Which made me sad and angry, and which made me think, fuck, if this is Saturday, Sunday is going to be hell.
But Sunday was fine. Sunday, actually, my hip felt great.
I said this to the therapist with great frustration. I clenched my fists and teeth and said, "But this doesn’t make sense," and I said the words I was afraid he would say, saying them first as a defense because it would hurt to hear him say them to me, would make me feel more alone with this than I already am, and I wasn’t interested in melting down, so I claimed them before he could. I said, "If I weren’t in this body, I would say I was making this up." And then I was still afraid he might tell me I was right, and so I braced and then started to ramp up more—
And he held out a hand and said, gently, "Heidi, it’s good that you didn’t hurt on Sunday. It’s good."
And I tried to tell him, no, it’s not, it doesn’t make sense—
And then he stopped me again and showed me the nerve thing. And the buzz thing. And it makes sense. It was the logic I had been screaming for, or at least potential logic. It fits with the other pieces of the logic which have fit. It is not all in my head, but my head is making it worse. Every butterfly is a bus. And it is. I am living in a state of readiness that equates every day with the day of the Final Battle. But it’s not that battle, not ever, not really, and it certainly isn’t final. And he explained that stress and hormones and diet and sleep and other things affect this too. And he admitted that a whole hunk of it is still unknown.
And then he spent twenty minutes trying to get my brain off of the pain and back on life. He showed me some more exercises which could help with some of the specific ailments I had mentioned. He helped me brainstorm some of the things I had worried were aggravating. Some maybe were. Some maybe weren’t. He instructed me to make long and short term goals about pain mangement and exercise and life in general. He stressed, emphatically, that I keep up the exercise, especially the pool. And without saying it—I made the connection myself, and he was surprised by it (which amused me) but agreed it was right—that this was mindfulness. Mindfulness for my brain. Not for my thinking brain exclusively either. This was a long, technical, careful way of saying that my way of dealing with this is most likely making it worse. It might have been an injury that made exercise stop working. Or not. It might have been hormones. Or not. It might be something. Anything. Lots of things. Nothing. But my brain has made it something more. And my brain is what I can control.
And right now at now 4:30AM, this makes me angry. And sad. It feels very unfair. In addition to everything else, I have to be my own monitor too? I have to wake up in the middle of the night with my neck screaming in pain and then, not fully conscious, stop my brain from going on red alert because this is NOT an injury, not at the level that it feels like, and the best medicine is to calm down? When I am sitting in a chair holding a book or an iPad or nothing at all and my arm loses feeling, I have to be the one to point out to myself that weird as this is, it’s not a tumor, it’s not a deadly disorder, it’s just my strange body and that panic will make it worse? When I’m tired and hormonal and it’s late at night and when I’m worried about external things which have their own levels of real and pereceived danger and something in my body starts to hurt—when I do not have the mental strength or resources to stop my brain from freaking out over HERE WE GO AGAIN, I have to do it anyway?
And that. Sucks. So. Much.
The funny thing is that there is a part of my brain already ready to go into the light. There is a part of me which has seized this with joy and is almost laughing because it’s so happy, because it knows this is something that could really, really work, both as a strategy for pain and stress management and as a general philosophy. Part of me even sees this as a challenge. Part of me says, "Oh-ho? All right then. Let’s do it!" But you know, not yet. Because part of me is weeping. Like, really, really weeping. Part of me is already tired and thinking of this just makes it more tired. Part of me already feels like there is too much to deal with, too much that I don’t want to do but have to and now there is just more, more keeping me from the things I actually do want to do. Part of me is just furious with the whole fucking universe for being this way. Furious that this is something I have to do on my own. Furious that I can’t believe in a Connect-the-Dots God who is waiting with a clipboard for me to get it right and these are just the hoops I have to jump through. Furious that even though I do beleve in a Universal One, it has not set this up to judge me or test me or temper me. This has just happened. This just is. This is not my reward or my penance. There isn’t really a whole lot of karma in it. It just is. Some of it may or may not be my own doing, but I can’t know, and there’s no answer.
Some of you are about to read my novel Double Blind. Well, when you read it, when you read Randy—I have some Randy in my head. I have a lot of Randy in my head. I do like to play the games I can win. I do like to back out of things that aren’t working because I don’t like to fail. I do not like hedgy bets. I think the roulette wheel is very, very stupid. And I don’t enjoy craps. I DO enjoy poker. Unlike Randy, I don’t like heights, and I hate the desert. And—well, there are other things I don’t do that he does, but I don’t want to spoil things, and I don’t want to be boring. Suffice it to say that Randy is my soul mate, or maybe just part of my soul. He and I can meet in the landscape of my mind and commiserate. And we do. A lot. And what we both hate more than anything is the chaos that life is, and we both like to work hard to make it go away.
And that’s what I hate about this buttefly/bus thing, even though I think it will help a lot. I hate it because not only is it more work that I have to do, that no one can do for me, that I have to do all by my damn self, invisibly, but on top of that, damn it, it’s going to force me to sit at the goddamn craps and roulette table and say, well, you know, sometimes things just are. Some things you can’t control. Sometimes it’s not a happy ending. Sometimes the only thing you can do is stand there and look at the chaos and say, "Yep. That’s chaos all right." And then Randy and I both have to swallow the rancid dick and say, "And I can’t control it."
God fucking damn, but I hate that.
Because the butterfly/bus perception issue is an answer, and it isn’t. It’s a strategy, but it’s also more work. Probably work I need to do. Actually, as I said to someone in an email in the last few days, I forget where, this is bad writing here, my life just now. It is too neat. I was already working on this lesson in the philosophical world and some of it in the practical social world, and now I have to do it in my body too. It’s bad writing. It’s too close together, it’s too neat, and it’s the sort of sloppy stuff that would read as trite in story. I don’t like this story. It needs a good editor. I am cheesy, yes, but not this cheesy. And it makes me mad.
When Randy faced this moment in the story, he resorted to a joint, which is something I am not interested in doing, though I’ll admit a Dunhill sounds really awesome right now. So does a chocolate cake from Costco. But neither of these things are going to happen. I’m going to go back to bed and sleep until the alarm goes off in two hours, be tired as I get Anna ready, then go to hydrotherapy. Then I will come home and work on the many things I have to work on. And all the things I have to work on, all the edits and the drafts and the galleys which will come along soon enough for Miles—all these things are more bad plot, because this whole, "there is no order, there is no guiding hand, there is no justice, but there is you, and you can do this" is all over my fucking writing. Any moment now someone is going to point out that I am really stuck on a theme. I think it is because even though I am shouting truth at myself, neither Randy or I like it. Butterfly or bus, this sucks. And really, it does.
But Randy and I are better than that. And right after this joint, we are going to flip off the bus, tickle the butterfly, and walk across the goddamned street and everything in the way can just fucking deal. Hips, shoulders, neck, knees, and brain be damned. Because somewhere over there is our Ethan. A lot of Ethans, actually. The Ethans are everywhere, and so are we. And most of the time we CAN make this our poker game and get the best of it.
But we are having the joint first, and maybe a shot, because these last few hands have been bad. And we may take a motorcycle ride, and we may have a flirt with the guy at the bar before we cross the street. Because we like control, damn it, and sometimes being bucky and cranky and sneaky and obstinate and wickedly charming and manipulative is the only way to get it. And sometimes we want to wait for the Ethans to come and sit with the bar with us, because we’re tired. In our mind or for real, sometimes we just hurt, and we don’t want to work, not that hard. Not yet.
And you know what? That’s okay too.
*Terry Pratchett. Anna and I are reading A Hat Full of Sky aloud right now. The brain sucks this stuff up too, especially if it’s my brain.