I made a lot of big plans. Plans are hope. They necessitate a future that is not only different from, but also better than, the present.
But plans are fragile, little crystalline thoughts that must be carried from place to place cupped in a steady hand that is always slightly too small to carry them, breathing even, or even held, until they can be put somewhere safe.
A body in pain can’t carry such things, and inevitably, when you try, they shatter. Their shards stick in you, adding to the pain.
The first and most persistent thing pain will teach you is patience, and that’s the hardest thing to learn when time feels limited. When the chances for education are slipping away, when friends drift off from social neglect, when your children are growing up regardless of how much time you can give them, when there’s so much work unfinished, when your partner gets up to leave for work, and you stay home, surrounded by shattered plans and time that flows like syrup.
But impatience doesn’t bring anything back. Patience, and enduring the contradictions it brings with it, is the only hope you have. Do the next little thing. When you can’t, wait, try something else, sit quietly, try again.
Pain is a thing you manage. Management is a skill. It takes time, expertise, communication skills, and meetings. All of these are part of an ongoing process that takes up many hours of my waking life. And I have many more hours of waking life; the pain rarely lets me have a good night’s sleep. It tempts me to be angry, out of sorts, short and demanding with people. But I’ve learned; it’s begging for its increase when it does that.
Pain will teach you that it cannot be compared. It is special, a one-off, unique to each one that suffers. Everyone has pain, pain that plays like an orchestra through our lives, sometimes in quiet solos, sometimes in crescendos. There is pain that makes us grow, pain that we feel because we are growing. There is no point comparing yourself to anyone else, because pain is a subjective experience that cannot be shared with anyone. But you still have to describe it, explain it.
“What is your pain like, and how bad?”
I open my mouth, but pause. It’s the tightness of a string section on the verge of breaking with horns coming up and over the sound until I forget to breathe, until I don’t feel entirely real anymore.
“It’s an aching in my shoulder and arm, but with some sharp pains in my neck. About a 5, I guess?”
Pain has an irreducible relationship to time and movement. It exists in moments, and stretches out to fill all the time it can. Nothing else is so good at making the human being aware of the perceptive passage of time. It ticks on minutes, never hours, until you sneak a look at the clock. You know it would be better if you could sleep, but you have to fall asleep through a crescendo of sensation, your brain refusing to stop working to perceive it all. Your brain believes that pain time is important time, and important time is slow time.
Motion causes and prevents pain; pain causes and prevents motion. Like time, motion can become a hyper-sensual experience. Pain is consciousness on overload, far too in-the-body, far too much cognition to fit in my little body and my brief time. And in the bitter irony of it all, it’s so much cognition, I can’t think.
But it’s with me, this pain, my near constant companion in life. So we might as well talk.
It was in a backyard in 2005 that I learned pain was not what I had thought it was, when I saw someone listen to pain.
I was working on a story about extreme body modification, and I’d been invited into the safe space of a community that tattooed and cut and changed their bodies in ways that most people would never consider. I met and chatted with many people, and listened to their stories that night.
What I found was that the people around me pursued and embraced pain, took it in on their own terms and used it to heal themselves. A sweet and small girl who called herself Kali gave me permission to photograph her suspension. A suspension is a number of hooks, in this case two, put through a part of the body from which the whole body is suspended in the air. Many of them are done as performance, often a part of shock theater. This one was done in private, in her community, on her own terms. She was put up on two hooks through her back and swung around. She stayed, hooked through the back, in the air for almost an hour, spinning, dancing, flying, breathing, all in the most deliberate of ways. I was awed to witness it, and honored to be able to photograph it.
Kali never cried, or screamed, her face was always a mask of concentration. When you’re in so much pain, you’re not doing anything else but being. The world drops away. You are purely the thing experiencing. But you have some choice in how you experience, and that lesson would come back to me again and again as my body seemed to slowly betray me.
I can choose to frame what’s happening to me. In this way, pain whispers an essential truth of living in this universe. We cannot control what comes in, but only what we make of it.
Sometimes, even after all the drugs have failed. I feel the endorphin release. My body floods with warmth, and I feel still alive.
“If you’re learning so much from pain, why haven’t you gotten your work done?”
Occasionally, other people do say that, in not so many words. But usually my insecurities put those words in their mouths. Mostly they are saying, why can’t I have what I want when you said I could?
All I can say is that I’m sorry, but for now, you can’t. Today it is not mine to give.
I miss being able to exercise and work and feel like I’m part of the world. Sometimes that hurts worse than the pain, time slipping away, watching my family growing up and working and changing, and feeling left behind. Watching the world roiling, trapped where I can see, but never do, a force field of circumstance between me and the age I live in. The minutes slip into days and and I panic because I don’t know how much time I have left. Feeling my life pass, wasted.
One of the worst things about pain is that it makes me so goofy and lost. I wander around my house looking for the same thing 3 or 6 times. I feel like I have the attention of a mayfly. Pain makes me stupid. I’m frustrated by that. It makes me stop, breathe, write things down — sometimes a to do list for the next few minutes. I imagine this must be what it’s like to deal with early dementia, and I think, I want to be graceful about this. Where do I find the grace in this?
If I can, I write down that thought, and the ones that come after.
Pain demands that I pay attention to it, then tells me random things very loudly. Like a natural process it resists prediction and administration. It can run away with itself. It changes without notice or evident pattern. Pain keeps its secrets. It is like nature that way, like the weather and the ecosystem, economies, earthquakes, rivers, public policy. Pain never lets you simplify complexity. It is the ecosystem of me, in stochastic rebellion against the cognitive me.
The disease might kill you or not, but to be sure self-pity will kill you if you let it go unchecked. There’s no avoiding self-pity, there’s no one who is perfectly capable of never falling into it. It is pain’s most dangerous traveling companion. Pain may hold on to you, but it’s self-pity that eats you alive.
Somewhere below the beastly self-pity is something else. There is a wealth of courage and hope, these are what sit down its throat, past the beast’s teeth. There would be no reason for self-pity, if you could not imagine yourself as something else. The trick then, is to reach past the its teeth and down its throat and pull out those pieces of hope. What you pull through self-pity is resolve. It’s a balance between self-care and that little bit of anger that drives you, that little bit of anger that makes you seek a better life even inside all the pain.
Even when you pull those parts out of the self-pity, the useful parts, the pity itself remains always a danger, sickening despair and anger, a path to addiction, to selfishness, and ultimately, to suicide.
Nothing is fair, sweetheart. It ain’t that kind of universe.
Don’t worry, I remind myself, you’re still in the lucky half of all the humans born, you didn’t die in infancy.
These are the little mantras you develop to push back the fleeting bitterness and frustration. Well, you hope it’s fleeting, you try to make it fleeting.
This is another lesson of pain. To let things go, to let it all go. To let it all wash over you and through you, to be clean and ready on the other side, to wait, to prepare carefully, for as long as it takes for the future to arrive, even when you grieve the time you missed. It is the only way to make time pass.
It’s all in your head. At least you have to wonder sometimes, nothing is happening to anyone else. I like to say it’s all in my head. Or at least, if I didn’t have a head, I definitely wouldn’t be in pain. Chronic pain teaches you about the life of the mind. Even when you don’t really want to know.
Is this real? Why does it feel real? Why do I feel like this at all? There’s no meaningful evidence, there’s no physically obvious reason for my pain. I can’t make sense of it sometimes. Here is my neck, so tight, I feel like I’m going to throw up. It aches so much I have to force myself to breathe.
I touch it again, like I touch it all the time, looking for something, for a reason. But there’s only unbroken skin, sliding across simple human muscles below. To my other senses, nothing is happening.
I can’t show anyone my pain. I can’t measure it, except on that 1-to-10 scale. I can’t compare this overwhelming pieces of my reality to anyone else’s, even my own family.
“I believe you,” the people who love me say, and they have to say that. They look at me and they look like they’re swearing to God, and they say “I believe you, I believe in your pain.” And like God, you wonder if your pain is real. You wonder, because all you have to go on are all your feelings.
“Is it a bad pain?” he asks.
“Yeah,” I say, “it’s bad.”
But I don’t know. Maybe the pain I feel is nothing compared to what everyone else feels every day. Maybe a scraped knee for someone else feels worse than this. We can both scrape our knees and use words to compare our feelings, but we might as well be talking about what green is, what is good, what it means to be happy, whether there’s a God.
We must press ourselves into these tiny words and hand them over to someone else and hope it means something to them.
“What is your pain on a scale of 1 to 10?”
I think. “Maybe a seven today?”
“How real is this life on a scale of 1 to 10?”
Thinks. “Maybe a four.”
I don’t know how real my pain is, and neither do you. My pain has taught me I don’t know how real anything is. When I insist, it is not because I know it is real, it is because I want you to believe me. Or because I want to believe me. Or because I am looking for something to change. Or because I think you can help me.
Right now, as I am writing this, the pain is radiating. It’s reached under my clavicle, it’s tapping on the base of my skull. It’s wandering under my left breast, and sending the occasional aching and electrical pulse down to the last two finger of my left hand. It’s epicentered in my neck, my superior trapezius.
Maybe that ache is the levator scapulae, or the semispinalis muscles. It’s hard to tell. My neck is soaking with pain, pain that feels like it could choke me. It can get all-consuming. I say to my partner: “It hurts so much it’s interesting.” I don’t scream. I don’t have the energy to scream. Hurting is taking all the energy I have and nothing is left for screaming. At its worst, It really does fascinate me. I don’t know what use it is to have a brain that can hurt this much. Why would we evolve this? Is it an accident? Is it the price we pay for being the only animal that perceives the universe? Is it the will of some god that made us to endure all things?
I rarely throw-up from the pain, but I often feel like I’m going to. Like so much of this, I try ignore it until it goes away. I let time pass. I distract myself I lose track of time. It’s merely and wholly interesting. Sometimes it feels like my tongue is swelling. It’s not, but I feel like I have to concentrate on not biting it.
Chronic pain feels like a hallucination, and it is. It’s not externally motivated, it has no obvious meaning, it’s just there, a piece of life, not everything, but refusing to be ignored.
Chronic pain will teach you faith. It will teach you the power of feelings. Like God, pain is a jealous hallucination, it doesn’t want to share you with anything, and you must share it with everything to have a life.
I will make this something good. I will make this something I can live with, something I can learn from, somehow, in ways I can’t yet imagine, I will make this good. And then I will make new plans.
To be alive is good.