When hope becomes a shapeshifter.

I don’t want to write this.

I don’t want to tell you that the hopes I quietly carried until two weeks ago, when I unabashedly wrote about them—didn’t pan out the way I wanted. But I saw this post1 by K.J. Ramsey this week, and I knew: I couldn’t skip another week without writing, without confessing the truth of what happened and how I feel now. Here’s part of her post:

To bring you up to speed it you missed it: two weeks ago, I wrote about the big hope, but there was a smaller one, too.

Neither were met with certain, sure fulfillment. The latter, a quick, impersonal “no.” The big one, a murky few days full of maybes and shrugs and tears and anxiety.

I didn’t immediately eat without pain, which was the hope and the expectation of my doctors. Instead, the pain morphed and shifted. It felt different. It was overshadowed by other conditions’ flares—something I haven’t experienced before. It was a strange reorienting of which pain hurts most. I didn’t expect that.

So, the question anxiously flitting & buzzing around my mind like a hummingbird is this:

Which sounds dangerously close to:

I don’t know the answer to either of those questions, to be honest with you. But I’m also not sure I have to. Granted, the first one is more objective; it’s what I’ll be carrying into the follow up with my doctor a week from today. Ultimately, it’ll be one he answers—an answer I might have to counter with the kind of self-advocacy that scares me.2

The second one is carried deeper within me. Next to the risks it takes to hope at all; beside the doubts that are inevitable; alongside the litany of disappointments I’ve walked through before these. I have to have compassion for all of them. I have to welcome them, let them balance beside hope on the scales I seem to be holding right now.3

This week, the scales tipped hard with disappointment. Clanging, crashing, pulling me down with them. Hope became light as air, elusive and a stranger to me. The certainty it felt like these past few weeks? It may still be in me somewhere, but I’m numb to it.

As I moved through the days after the nerve block, I had to think a lot about my pain. From panic-attack moments to sitting in silence after a meal, wondering when/if/how the pain will show up. I took copious notes, pouring over every sensation for a whiff of how I felt, what it could mean, how I could put it into words, both for myself and my doctor.

It was an exercise in clarity—definitely not certainty. I’ve never uttered the word “maybe” so many times. But as I sat with my pain—which is to say with my dashed hope personified—things felt a little clearer. I softened into what I felt.

About what I want, what I need (or don’t); what paths I’d like to take, what paths I’m still on (or not).

I want to write. This may feel like a “duh” to many of you, but to me, it has never felt like a duh a day in my life. But it’s coming into focus now. Every week that whizzes past where I miss my Wednesday writing groups4 feels awful, and not in a self-blame kind of way (usually), but in a I-miss-it-so-much-I-can’t-stand-it. This is clarity.

I want to advocate for my health and do all I can humanly do to increase my quality of life. Again, another potential “duh,” but if you’ve never dealt with chronic illness, you cannot imagine how incredibly difficult this is. It’s not a given. It’s something you have to fight for over and over again. Most—if any—doctors aren’t helping you. You have to fight for this. You have to hope for it, even, which feels impossibly hard. But sometimes hope is action, not feeling, and sometimes you know exactly what you have to do. This is clarity.

It knows the risk & hope on each side. The disappointment & expectation. Clarity offers counter balances, stills their oscillations, tips the tipping points. Clarity picks them up again when they lurch out of my hands.

Maybe clarity even removes the blindfold that keeps me from seeing exactly what I’m holding.

(The thing you really want). The risk-you-took-then behind the risk-that-is-now. The scabbed-over disappointment beneath the fresh wound of disappointment.

A walk down memory lane that held photos of my 24-week-old preemie self. A tiny incubator. Eyes taped shut beneath the invisible oxygen flowing all around. A heart monitor threaded through my onesie at home, months later. Breathing treatments at Disney World.

But as the photos followed me growing up, it’s clear—I start to smile. I found myself. I loved horses. I briefly modeled. I remember the feel of Christmas presents and Easter dresses, leopard print purses and polyester fabric. I saw 4 photos I didn’t expect or know existed, each a different snapshot of a memory I share in my memoir.5

Clarity is written into our stories alongside every hope and fear and disappointment. Maybe it’s a line scratching something out. Or a thread holding a story together. Or a handful of tiny calibration weights balancing us back to steady stillness.