“Epic! It feels like the spaceship just dropped us in another galaxy!” my husband exclaimed with awe as we stood facing Crater Lake.
I felt a part of me bristle as I looked out into a mass of gray and white haze.
“WOW, this is just incredible,” he went on, picking up his phone to take a photo.
I could hear strangers nearby doing the same, posing for photos, remarking on the spectacular view. And the bristled part started to grow more bristly.
I’ve done enough parts work over the years to recognize that this growing anger wasn’t me. I knew I had plenty of other parts who were just happy to be standing in the sunshine, a refreshing breeze tickling my skin. But the bristly part was growing louder, drowning out the whispers of the contented ones, and that was my cue to speak up.
“Babe,” I began, “there’s a part of me that’s feeling really angry and irritable right now.”
“Okay, that’s exciting,” my husband, who has done parts work of his own, remarked. “Let’s see what they have to say.”
I laughed to myself, thinking about how I would have reacted in a similar scenario years ago. Ten Joys ago would have likely tried to push down the anger, only for it to seep out as a cool tone, snappy remark, or general irritability. Ten Bens ago would have been left walking around one of the most gorgeous places in the world with a very crabby wife, absolutely confused.
“I hear you talking about this incredible scene in front of us, and I have no idea what we’re looking at. Part of me feels completely left out and so angry that I can’t see what you’re looking at and that you haven’t attempted to describe any of it to me.”
Ben squeezed my hand.
“I’m sorry, babe. I think I often forget how much your vision has deteriorated in the past couple years. There was a time not too long ago when you could make a lot of this out.”
Then he went on to describe the panoramic expanse we were hiking beside, from the silky blue water to the crust of earth that rimmed around it like a wooden bowl.
I felt some of the bristles soften, but others maintained their stance.
“I want to see the bluest lake with my eyes, not just hear about it,” they barked at me.
“I know,” I said to the armored bristles. “This is hard. But let’s keep going. Maybe there’s something here for us. There are still some islands of peripheral vision to the side. Maybe we can catch a glimpse.”
The most armored of the bunch did not stand down.
“Those measly islands of vision? They’re worthless when it comes to anything really important, like seeing color or reading or seeing anything in detail. Sure, they help avoid obstacles, but they’re not what we need now. We need the pinhole back!”
I knew the pinhole they spoke of. That little pinhole of central vision I had relied on for so many years.
I remember my childhood ophthalmologist, Dr. Fishman, once remarking that the little pinhole of central vision in my right eye was my whole world. And he wasn’t wrong.
I learned to use it so well that I could read novels, read aloud to my students when I was in the classroom, glimpse the beautiful faces of my daughters, their blue eyes framed in curls.
That pinhole wasn’t much, but it was enough.
For some reason, I thought it would remain for a very long time. I remember telling my mother-in-law in 2021 that I wanted to see Italy before I lost my vision. In my mind, that was still years away. When our family planned a trip there in 2024, we eventually backed out, partly because of finances. But there was another reason I didn’t say aloud. I knew we’d be surrounded by people oohing and aahing over stained glass and the Italian countryside, and I knew I could no longer experience those things the way I once had.
The RP had entered the pinhole.
A friend who also has late-stage RP once described it as a piece of wax paper being placed over her central vision. I find the description fitting. There is no color or clarity through this wax paper, and it seems to thicken each year.
At a recent vision appointment, the doctor mapped the remaining islands of vision around my periphery. There are quite a few, and they help with mobility. Still, sometimes I wish I could have directed the RP myself. Cover those islands with wax paper instead. Leave my pinhole alone.
Why did it have to take my little sliver, the one holding my world together?
But I guess RP, like life, doesn’t give those kinds of choices.
“Let’s keep walking,” I told Ben. “Maybe I’ll catch a glimpse from the side as I turn my head.”
“Totally,” he said. “And maybe you’ll be able to perceive some of it with your other senses. There’s a certain energy to places like this. You can kind of feel the open expanse.”
He guided my hand toward a rock, and I ran my fingers across its rough surface.
The bristles were unimpressed.
“This is just a stupid rock. You’re missing out on the panoramic enormity of all of this.”
I understood their point. We talk a lot in the disability community about the social model of disability, the idea that many of the things that disable us are barriers society has constructed. But standing at Crater Lake, part of me wanted to argue with the model. Nobody designed this lake to be inaccessible. Sometimes nature itself seems to ask us to see.
And I couldn’t.
So we kept walking.
At one point, as we paused to take another selfie, I turned my head and caught something through one of those islands of peripheral vision.
A sliver.
I’m not sure I can even tell you exactly what I saw. I don’t know if it was the lake itself, or a piece of the rim, or simply light and shape coming together for an instant. Maybe my brain filled in something my eyes couldn’t quite perceive. Maybe I was sensing the enormity Ben had described, that strange energy of an open expanse.
Whatever it was, for a moment, I glimpsed Crater Lake.
Not the blue Ben spoke of.
Not the entire picture.
But something.
And I felt the armored bristles begin to bow ever so slightly.
Nothing had changed. I still couldn’t see the lake the way I wanted to. The pinhole was still gone. The rock was still, frankly, just a rock.
But the bristles had been heard.
And that seemed to make enough room for some of the other parts, the joyful ones, the grateful ones who had been silently standing by, to rise to the surface.
I felt the shadow of a smile grace my face as the cane my daughter had bedazzled for me grazed the path ahead.
A couple of tourists passed by, and I faintly heard a man remark, “That puts things in perspective, huh?”
I can’t be certain he was referring to me.
I got that all-too-familiar feeling I have when I’m in a very visual place and imagine what passersby may be thinking.
I don’t want people to pity me.
I don’t want to pity myself.
But sometimes they do.
And sometimes I do.
As we continued walking, I turned my head from time to time, searching those little islands at the edges.
Every so often, something appeared.
A glimpse.
Maybe light. Maybe shape. Maybe Crater Lake. Maybe simply a sense of the place.
Lately, the loss of my pinhole has felt painfully recent, still close enough that part of me keeps reaching for what used to be there. And yet here I was, receiving the world in another way, in fragments and flashes I couldn’t force or fully explain.
Maybe glimpses are a little like a creative muse. You can make space for them. You can pay attention. You can turn toward them. But you can’t demand that they arrive.
Sometimes they show up.
On a hike.
On a drive.
In a crater.
And sometimes they don’t.
In this lifetime, we do not get to choose the slivers of joy that show up. We only get to choose whether to receive them.
Maybe we don’t always need to know exactly what we’re seeing.
Maybe, when a glimpse comes, we just turn our heads toward it.
And let the bristles bow.
