Oct 23rd, 2025; Feb 10th, 2026

“Where you come from is gone, where you thought you were going to was never there, and where you are is no good unless you can get away from it. Where is there a place for you to be? No place… Nothing outside you can give you any place… In yourself right now is all the place you’ve got.”

― Flannery O’Connor , Wise Blood

Living with chronic pain isn’t simply a part of aging or being a woman.

It’s not a lifestyle choice, a character flaw, a failing, or a sign of weakness.

I wrote those words in October. It’s now February.

It feels as if the world is experiencing emotionally what I’ve experienced physically for many years now. Sometimes pain doesn’t end but changes. Sometimes nightmares follow you into the waking day and sometimes the only person to console you from them is yourself.

Pain is the first thought when you wake when you’re chronically ill. My eyes open and it’s as if I’ve been sitting in a dark room for a long time, only to have a flashlight clicked on in my sight. It’s the flood blocking out all thought. I’ve been attacked in my sleep by an assailant that I can never see or beat. The lingering sense of what was before and the fear of what is next. Just rising to standing takes effort.

“They mean well,” I tell myself, “If they understood, they wouldn’t be unkind.”

How do you live this way?

You’re STILL in pain? God, aren’t they going to do anything about it?

Let’s get together when you feel better…

Hope you feel better.

Well-intended words and interest that cut like a knife when you doubt yourself and feel diminished by the pain. The wish to show support but cutting all the same. The wielder of the knife is still responsible even if they didn’t mean any harm. How can anyone understand what it’s like unless they’ve lived it? I don’t wish it upon them. Pain is momentary for them and unfathomable as a constant state of existence.

If I defend myself, then I’m overly sensitive. If I explain, then I’m lecturing. If I express any emotion at all, other than calmness or optimism, then I’m being negative because to admit that you’re disabled is seen as a weakness to some, a source of shame to others, and a contentious label to those that I fear. 

Mind over matter, keep your chin up, maybe just exercise more, have you tried aromatherapy?

Yet, if you’re fortunate enough to live long enough in this life, you will someday most likely be considered disabled yourself. If you’re unfortunate, you will discover at a young age that you are expected to maintain a seemingly functional existence while being barely able to function underneath the facade of “looking ok”.

I’m ashamed to admit that I have, at many moments, told myself that “when I’m better” or “someday” on so many wishes and goals, but degenerative conditions are not magically cured and by nature do not result in better. There is an urgency to the sense of time you have and the ability to do what you wish as you watch it dwindle away. It’s hard for others to grasp your irritation or impatience when they ask of you to give that time to them when they view each day as without an end in sight. I wake up wondering how many more I might have.

What is this destination ahead in time that we console ourselves with of someday?

This state we hold out hope for of being better when all signs point to the contrary. Why do we labor and berate ourselves to hope for this? Because society tells us to overcome despite the odds and that we could get better if we really wanted to, despite genetics, circumstances, poverty, or any number of immovable obstacles.

It may seem a stretch, but I feel that those targeted by our current regime have more in common with people like myself and that I need to fear what their next steps will be. The handbook of fascists in history have shown a penchant for targeting the disabled and I don’t think it’s irrational of me to assume that we’ll be on their list of those deserving of their abuse since all signs point to that being in the works currently.

But my mind goes back to this idea of better. Being better. Aren’t we all waiting, on some level in some way, for better? It’s not a push pin on a map that we haven’t found yet. It’s a state of health, for some like me, that we can’t reach. It’s a sense of freedom that seems unreachable for a great many of us.

In my fifty years, I’m beginning to believe that the answers every person seeks are locked within them and not an ideal that needs to be imposed or lectured to them to convince them to achieve. Poverty isn’t chosen any more than poor health and bad luck has a funny way of being connected back to decisions made at someone’s expense. I’ve never met a mother trying to feed her children who chose for them to starve or an immigrant that came to this country not to find a better life and add something to the world around them.

The grace that we all seek, whether we’re in pain physically or within our soul, is the solace that we some have never had and will never find beyond ourselves. It’s the comfort of loving parents, family, or a country that doesn’t exist for us. In a better world, in a better life, it would exist for us all without replacing it with substances and opiates of distraction. What I wouldn’t give to feel consoled and healed from my pain and what I would do if I could give that to everyone. It’s the greatness that our society has never reached and the better that we all secretly hope for but have yet to see. When we’ve come close it’s all the more bitter for the sweetness that we glimpsed.

So I close my eyes at night to slay the dragons of my body fighting itself and I say a wish for the world to right itself despite the corruption and inequity created by those in power. All so that they can numb themselves with their singular pursuits in search of something better for themselves. To rule us all and squeeze out as much pain as possible to satisfy their sickness. All the while telling us we should admire them because their lives are better than ours. A better that won’t ever satiate them and one that I don’t need or want. Better is to be free of this pain, to be free at all; better would be the solace of equality that is hard to believe in right now.