[content warning: chronic pain, mental illness, depression, brief mention of Fifty Shades of Grey/the abuse inherent within/EL James being an abuse apologist and horrible human being, some ranting about (dis)ableism and/or ageism]
Many of you are probably familiar with Spoon Theory. If you’re not, you can click that link and read it in full, or you can read the following paragraphs, where I shall attempt to summarize.
Each person has a certain amount of energy each day, and when it’s up, it’s up. You can sometimes borrow against the next day’s energy, but not without paying for it. When you have chronic illness, that energy is far more limited than if you don’t. The Spoon Theory came about as one woman’s attempt to explain being sick all the time to her able-bodied friend: a spoon was a unit of energy.
Each action you do takes a spoon. When you’re chronically ill you start with fewer spoons than non-ill people. Spoons has become shorthand for energy. Personally, I’ve expanded it to an entire utensil drawer: spoons are my physical units of energy, forks my mental, and knives my social.* I used to have considerably more spoons than forks or knives; now the spoon count starts out lower, which is hard to get to used to.
Today I had a bit of a revelation as I hobbled my crippled body down the sidewalk. I had decided, you see, to walk to my errands. Reason one for this was they weren’t that far away and driving seemed like a waste; reason two was I didn’t feel up to driving my car because I’ve been up for *checks clock* 24 hours now. I figured walking might be safer, for me and everyone around me.
Reason three was that I have been trying to get more walking done lately. My eventual goal is to get to 10,000 steps a day, which is what my mom does. (And if my mom — who’s got 38 years, a broken leg, a disc surgery, and fibromyalgia on me, not to mention a rescued wolf-dog who likes to break her fingers with the leash when he sees another dog — can do it, then so can I, gods dammit.) Right now, however, I’m happy if I get over my normal 200/day.
On Sunday I did 2600 or so. Today I checked my pedometer when I got home and saw that I’d done 4600. So that’s big progress.
It’s sort of hard to feel pride in my self at the moment, however.
Because I came up with the perfect way to explain it — to explain what my chronic illness is like. And I could only come up with this explanation being in as much pain as I’m in right now.
In my body or spirit or whatever there is a cauldron. It is a cauldron half-full of pain. I suppose it’s in liquid form. The form of the pain doesn’t really matter; what matters is this cauldron holds my pain level for the day, and the level of that pain starts out within certain parameters. The last time my cauldron was empty was one day in 2007, and I don’t remember what it felt like. All I remember was saying in affinity group (this was at Witchcamp) that I wasn’t in pain for the first time in I didn’t know how long. (I have hopes that someday, I can have another day like that. Just one. Just one more day without pain of any sort.)
So, I start out with my cauldron, filled with my daily start-up of pain. And above this cauldron, I’m holding a bunch of spoons, stretched out, flat, because within each spoon is more of that liquid pain.
And every time I use a spoon, whatever amount of pain was in it falls into the cauldron.
Each spoon is different, of course, and what’s going to cause me pain on one day is not necessarily going to the next day. (For example, the past two days my usual pick-me-up of a hot shower has been causing a lot of pain in my legs, which have also been having some pretty bad edema. First time for everything, I guess.)
Today, I think I overdid it. I emptied too many spoons into my cauldron. Now I’m sitting in front of my computer, trying to breathe in a way that doesn’t hurt and write a blog post that’s not totally depressing. (I am so, so sorry.)
There’s more to this cauldron thing too. There’s the residues from mental health issues. That is, when I use a fork on a particularly trying activity (like, for example, trying to raise awareness about how a certain popular book trilogy romanticizes and glorifies domestic violence and abuse**), it drops…something decidedly less liquid and more likely to stick around into the cauldron.
The stuff from my forks — that is, the residual mental weariness and mental illness stuff — is more likely to stick around, and longer, than the pain-liquid from my spoons. It will also make the pain-liquid…worse, in a way; there is a lot to be said for mental state and physical state and how friggin connected they are.
So on a day like today, it’s unlikely the pain-liquid is going to evaporate any time soon; I’ve dropped 4600 steps worth of spoons into it, plus a bunch of crap from my forks from this morning and yesterday and the day before. There is a big cauldron full of swirly-pain-gunk-crap in me, and that’s how my chronic illness manifests. As pain.
But cauldrons are symbols of transformation, too, and a big part of my path is transforming pain into something useful. It has to be a big part of my path and my life; I live with pain constantly. I have to find a way to make it useful, or I drown in it. (Your mileage may vary.)
It’s harder with the physical pain. With the mental pain, it’s easy for me to put on my A Space For My Head playlist and just rage it out, until I feel stronger for it — you go through enough mental anguish and you eventually come out the other side, knowing nothing can fucking touch you anymore. Come at me bro. No, really, come the fuck at me.
The physical pain is hard to see as anything but just a constant thorn in my side. In all my sides, and my fronts, and my backs and my tops and my bottoms. Just this ever present thing that makes my life harder; this ever present thing that means I have never known what it’s like to be “young”*** and will probably never know that. (I’m optimistic, but I’m not completely delusional. I know my body has serious limits. I’m not Gallifreyan. Or a Cylon.)
Don’t get me wrong; I am constantly looking for ways to make it better. If not to fix it, then to make it more livable. Ways that don’t include turning into Hugh Laurie and popping vicodin (though a lot of people say I remind them of House, so…). If I manage to find a miracle cure like my mom did (apparently it was five weeks in Ecuador; who knew) I will certainly let y’all know what it is.
But in the process of finding that thing or that collection of things that will help me make this easier, I have to find a way to transform the physical pain. To make it my ally, instead of my bane.
The best thing I can say about my chronic pain is that it has made me fearless. Or, perhaps not fearless, as that’s impossible — my chronic pain has brought my courage to the surface. I wear my pain like armour. Whatever you do to me cannot be worse than what I live with every day.
It’s similar to the coming out of depression to find you’re invincible, but on a physical level: you realize you’re not invincible, and you realize that things will hurt, but you do them anyway.
I could, theoretically, live my life to minimize my pain. By not doing anything. I could keep all my spoons upright, keeping their pain-liquid from ever falling into my cauldron, and I could keep that pain-liquid to a lower level. I could.
But I don’t. Because I will not let my body be my prison. So, walking to Price Smart and back again hurt like a motherfracker. So what, I ask myself. Yes, I’m in pain now, but you know what?
I walked 4600 steps today. I mailed my letter to Student Loans. I returned my library books. And I checked my lottery ticket and I won twenty bucks.
I just took that pain and I turned it into money and productivity and a fucking blog post.
Take that, pain-liquid crap.
*kicks the cauldron over and storms out like a badass*
*For those of you wondering why I chose forks for mental health energy and knives for my social energy, I refer to my mental health energy as my “giveafucks”, and forks seemed a natural progression from that. “Giveafork.” I chose knives for social energy, because after too long in any meatspace social situation I feel like stabbing people. (I specify meatspace here, because online I can always scream at the computer screen and go find something else to stab before coming back to the conversation. In meatspace, that is not an option
unless you’re bat’leth training on the holodeck.)
**No, I’m not behind that Twitter account, but I have been talking about this on Twitter a LOT the past few days, including towards EL James herself — as she’s denied that the books depict abuse, accused those of us trying to raise awareness of it as “trivializing real abuse“, and then called us trolls. Oh, and she blocks anyone who tweets to her about it. For a brilliant rebuttal to this bullshit, I urge you to read Jenny Trout’s blog post.
***And now you know why I strongly dislike conversations about how when you get older your body doesn’t “work right” anymore — if your body worked right in the first place, you are streets ahead of me and I’ll thank you to shut the fuck up about it. (If one more person tells me how lucky I am that I have my youth, I am going to find the FOUNTAIN OF AGE so I can become a crone prematurely and be excused for beating people with my cane. Oh hey look, two more c words.)