This is a wonderfully accurate description of what it’s like to live with chronic pain:
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.
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.
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.
This brings up an Interesting implication that pain tries to manipulate us into “feeding” it,
Pain will teach you that it cannot be compared. It is special, a one-off, unique to each one that suffers.
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.
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.
Time spent hurting, unable to do or think about anything else, feels like an alternate reality.
dear God if you lift this headache from my skull I’ll never sit at the computer for 3 straight hours again..
dear God if you could ease this pain in my head enough so that I can drive to my appointment, I’ll never ignore my 20-minute “stand up” alarms again…
dearest God, if you could just ease the pressure in my skull just a tiny bit, I’ll be good, I’ll do whatever you want…
oh my God, please let me die now
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.
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.
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
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
Pain never lets you simplify complexity.
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.
There would be no reason for self-pity, if you could not imagine yourself as something else.
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
Nothing is fair, sweetheart. It ain’t that kind of universe.
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.
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 can’t show anyone my pain. I can’t measure it, except on that 1-to-10 scale. I can’t compare these overwhelming pieces of my reality to anyone else’s, even my own family.
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.
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.
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.
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?
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.
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.
I can’t always agree with that last sentence, but this essay somehow filled me with a desire to keep trying to “make something” of my life.
Worth reading in its entirety, the original essay is at: Learning From Pain – Quinn Norton – Medium