Don't Get to Keep Good Things

This post is part of Sheryl's September Writing Prompts for People with Chronic Illness & Disability (2026 Edition). Aside from the challenge to my process, what I appreciate most is the participating and the connecting. Thanks to Sheryl for bringing people and perspectives together. If you're on the fence about joining, don't be. Sharing and connecting matters.

Off the Floor

Been off trail nearing a month.

C-spine, nerve and joint pain, stacked over everyday auto-immunity chaos. Some days getting off the floor took a while, not by choice, fast wasn't available. The body that did 2,400 miles a year couldn't manage the distance from carpet to standing.

That's humbling in a way that's impossible to miss.

Already wrote about missing my friend's celebration of life because of it. Not trying to write that again. I've been circling the currents around and underneath...

How grief and physical pain can borrow and compound each other.

B's death was one kind of loss of control, heart stopped. My body doing what it does is another kind. No negotiation or effort would have changed either outcome.

Different things close enough in the timeline, they start to blur.

The Numbers

I spent over five years working my way back from what looked a lot like disability. I went from barely managing to get upright in 2020, to walking the block in a slow crawl rebuild. Then eventually hiking just over 2,400 miles in 2024. Much of it with a loaded pack and real elevation. 2025 was still more than 1,800. So far this year, barely 600.

Now it's two or three miles without a load, maybe once a week, if that. A steady decline since December. Not the kind of collapse I lived through during the first half of this decade of illness. Seeing the distinction doesn't make it any easier.

It was a real grind to get there and not all of it was physical. Some days it was like three jobs, and only one of them paid. Harder than anything else in my 57 years on this rock. It's easily another six months before the needle moves again. Assuming there's any comeback to be had.

I clawed my way back to a capacity that didn't seem possible. B finally got to a good place, then no more chapters. And in the moment, it doesn't take much for the mind to connect those things.

You don't get to keep good things.

Maybe the good years are the exception and we're all just lucky to have any of it. Maybe I borrowed capacity I shouldn't have assumed was ever mine.

Pain is a convincing narrator. Escalating symptoms inject meaning, resurfacing old stories under duress. Not that my spine is having a bad month. But that this is what happens, it's what you get, it's what you deserve.

Grief tells a similar story. He didn't get to keep his life and I don't get to keep mine the way I want it either. Underneath was a question I didn't realize I was asking until recently.

Not, will I get better? Something older. Do I even deserve to want things?

At times, it feels like abject greed to even think it. My friend didn't get more time, and I've had more than expected. Years I wasn't supposed to and the trail back. For a time, I got stronger, miles, and found out what my body could still do.

Do I really get to ask for more?

Regulation

What makes this harder in the moment, is losing access to what manages everything else.

Regulation has less to do with calm, more the capacity to notice the oldest responses before they take over. The trail's been part of that for a long time. Movement, conditioning, blood pressure, POTS, that matters too. But it isn't all that's happening out there.

Getting away from the demands of modernity settles something in me. The break from traffic, road noise, appliance hum, screens. The woods don't cure anything and disease comes with me. The feedback out there is simpler and there's less noise competing for the same bandwidth.

It's not training. It's regulation.

Time off trail isn't just time without exercise. Less movement, more noise, and a shrinking space. Then grief makes physical loss feel larger. Two different things that begin to feel like one enormous weight.

I'm not trying to convince myself everything is fine, it isn't. My friend is still gone and my spine is still doing whatever the hell it's doing. There's a real unfairness in that and I'm not particularly interested in making that into some tidy life lesson.

Enough Room

I've been thinking about something I wrote before. How grief can sit beside gratitude and pain can live beside aliveness. That fear can be present without becoming the decision.

I can hate what's happening to me, miss my friend, be grateful he was here and for the life I've had and have. I can be afraid I'm losing capacity and still want more. Nothing is guaranteed. When something is taken, it doesn't mean it was never mine.

Those 2,400 miles weren't any less real because I may not get another year like that. Good years aren't the exception simply because they ended. Wanting more doesn't mean I'm ungrateful for what I got.

Maybe that's the asking. Not for certainty, or to be spared the next loss. Just allowing myself to want a thing I probably can't keep.

Certain kinds of childhoods bring the past right into the present moment. Pain over grief is a perfect storm that delivers like the crack of a gavel. Maybe part of this is refusing to let the present become a verdict.

Reclaiming the narrative from old patterns and stories about worth and deserving.

I don't know what happens next. Maybe that's enough room.

If pain has ever talked you into an old story about what you deserve...

You're not the only one still arguing with it.

→ Share this if you've ever had to ask whether you're allowed to want something back. Someone else may be sitting with that question too.

Connective Tissue:

→ Stone and Weather
→ Brothers, Sisters

Trail Crossings & Waypoints:

→ The Urban Pivot
→ Oh, theWater

Outlooks & Vantages:

→ 2026 Wildflower Gallery: February
→ Blue and Gold

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* peer reflections: not medical or therapy advice. *