Dispatch from the edge of meaning.

Statistically Unique

The chapter where I shift from “Why can’t I?” to “Can I?”

From “Why Can’t I?” to “Can I?”

Living in uncertainty is not just exhausting. It is a full-time job with terrible benefits.

For a long time, I didn’t know what was happening inside my own body. I spoke to doctor after doctor. Some wished me luck with what they described as “a very challenging and complex case.” (Which is the professional way of saying: You are complicated, and I have lunch in ten minutes.)

Others suggested it might all be “between the ears.” That narrative is heavy. When you are already tired, in pain, and unsure of your future, being told it might be psychological isn't just a diagnosis; it feels like an accusation. It adds a layer of shame and a feeling of despair that seeps into everything.

You start questioning your perception. Maybe I am exaggerating. Maybe I’m just not coping well. Maybe this is my fault.

It is amazing how quickly doubt grows when authority plants the seed.

“‘Between the ears’ is a fascinating place to locate blame.”

The Pivot

Until I met my current doctor. She is sharp, meticulous, and annoyingly unhurried. Early on, she told me to put down the "it's in your head" narrative immediately. She clarified that if something is “between the ears,” it involves the brain and the nervous system—which, last time she checked, are remarkably real parts of the body.

She tested. And tested. She ruled out some of the serious diagnostic contenders one by one. But as it turns out there wasn’t just one explanation. There were two. One of them quite rare. Because apparently, I’m one of a kind. Not particularly special. Just… statistically unique.

The Quiet

Oddly enough, certainty (even inconvenient certainty) feels like relief. Not because everything is fixed. It isn’t. But because not knowing drains energy in a way illness alone does not.

Uncertainty keeps your nervous system in a constant, low-grade hum of panic: Are we sure? Did they miss something? What if this is forever?

Clarity doesn’t solve the problem. But it shuts off the hum. And that quiet is powerful.

I feel incredibly lucky and so so grateful. Lucky to be taken seriously. Lucky that there are treatment options. I am under no illusion that this will be a straight line. Bodies are not spreadsheets. There will be side effects and adjustments. But there is a path. And having a path changes the internal landscape.

“Sometimes the bravest shift is grammatical.”

The Shift

For a long time, I lived in the question: Why can’t I? Why can’t I function like before? Why can’t I push through? Why can’t I keep up?

That question carries grief. And anger. And a quiet, clawing desperation.

Now, slowly but surely, the question is shifting. From “Why can’t I?” to “Can I?”

Can I live well within these parameters? Can I explore what this body can do? And if not the old way… then how?

It is a small shift in language. But it feels enormous inside. It is the difference between a tantrum and a negotiation.

The Clarity

I am aware that not everyone gets this clarity. Not everyone gets treatment options. Not everyone gets hopeful pathways forward. I saw that up close when my father was told his cancer had taken over his body without his consent. After the shock and after the mourning, he did reach some kind of peace. A clarity about what truly mattered. He shifted from participant to spectator and still found joy in that. In observing, noticing.

I am grateful that I still get to participate. But like him, I have gained clarity through the dismantling of my old life. Two years of illness have stripped things away. It strips away the illusion of control. The assumption of stamina. The idea that effort always equals outcome.

What remains is simpler. Health is not guaranteed. Control is partial at best. But meaning is still available.

I probably won’t return to my old self. If I’m honest, that sentence still carries grief some days. But alongside the grief, something else is growing. A grateful willingness to meet the version of me that exists within these new boundaries.

Not as a compromise. As a beginning.

So…

Here’s to curiosity. Here’s to recalibration. Here’s to what will be next.