This Body is Bullshit

Trail Magic

There’s this thing hikers talk about called trail magic. A good Samaritan leaves snacks or cold drinks somewhere along the path — something a weary traveler stumbles upon when they need it most. It’s not really about the food. It’s about the reminder that someone out there believes in what you’re doing, even if they don’t know you. That someone cares.

I’ve been thinking about that a lot lately. I want to be trail magic for people. Not with Gatorade and granola bars, but with care and presence and the specific kind of showing up that says I see you and I believe in you. I think I do a decent job of making my people know I’m proud of them. At least I hope I do.

Then there’s the less warm and fuzzy thing I’ve been sitting with: ambiguous loss.

It’s the kind of grief that doesn’t have an ending. The kind that leaves you stuck between hope and heartbreak. It happens when someone you love is physically present but psychologically gone — or when they were slipping away long before they actually left. There’s no funeral. No clear before and after. Just this slow, ongoing loss that you can’t fully grieve because the person is still right there.

I coped with ambiguous loss for years with my mom. I grieved her before she died because she was disappearing even while she was still in the room. And now it’s starting again with my dad. Maybe ambiguous grief is the better word. Because it’s loss and longing and confusion and love all tangled together, with no clean way through it. You can’t fix it. You just keep trying anyway.

I’ve been reading everything I can find on FTD. The neurologist recommended The 36-Hour Day and The Unexpected Journey by Emma Willis. The first was brutal — dense, clinical, depressing, a slog. The second was genuinely sweet. But neither had much to actually say about FTD specifically. They’re both really about caregiving in general. I still have no answers. Just the same long list of questions and a growing sense that the answers might not exist yet.

Meanwhile my body is staging a full-scale revolt and I’d like to speak to the manager.

My neck hurts. My shoulders hurt. My back, my hips, my knees, my hands, my feet — all of them, constantly, at varying levels of awful. Some days it’s background noise. Some days it’s the whole concert. The joint pain from these medications is relentless and I’m tired of it and it’s so fucking stupid. I have survived cancer, sepsis, seven surgeries, and radiation, and what’s going to take me out is that I can no longer open a jar without sounding like a sixty-five-year-old man getting out of a lawn chair.

Also, my obsession with animals is becoming a problem. My empathy for furry things is genuinely out of control. I want all of them — dogs, cats, goats, bunnies, tigers, manatees, bears, jaguars, foxes. I scroll rescue pages like it’s a spiritual practice. Maybe it’s because animals don’t need you to fix anything. They just need you to be kind and show up. That I can do. This is probably how I’ll go out — hugging something wild and magnificent. Honestly fine with that.

Kathy went to New Jersey last week to celebrate Mae’s birthday, which meant I was on Dad Duty. I kept him from going out to restaurants in the evenings — we went to his house one night, he came to ours twice, I met him out in the woods with the dog. The whole time I watched his location on my phone like a maniac. Called and texted constantly. Thursday night at his place he didn’t have a drink. Friday and Sunday he wanted one — so I gave him one. Minus the alcohol. He didn’t know the difference.

It was exhausting. I know I was overdoing it. Hovering, tracking, managing every variable. But I can’t help it. If it were up to me I’d keep him home all the time. But that would kill him just as surely as the disease will, just faster. So I give him his virgin cocktail and watch his location and try to breathe.

Somewhere in all of this I’ve been trying to get intentional about what I actually want. What makes me feel good. What I’m doing this for. I want joy. Simplicity. Presence. Not grand gestures — just things that are real and feel like mine.

And I’ve been thinking about this a lot: cancer didn’t make me sick. I had cancer. They took it out. Radiation was hard. The surgeries were brutal to recover from. The scars are tight and always will be. But I was only actually sick when I had sepsis, and when the infections came after surgeries. The rest of it was just living through something hard. Surviving. Which is apparently what I do.

Maybe that’s still what I’m doing now — surviving this strange tangled mess of grief and pain and gratitude and love.

Trying to make my own trail magic while I’m at it.