What hope actually feels like right now.

Hi, hello. Have you missed me? I’ve missed writing to you.

I could tell you that it’s been a month because we went to London & Oxford/Bath! Or because I was tired when we got back. Or because I haven’t quite known what to say or write since then.

All of those things would be true, but they wouldn’t be the whole story. Because the whole truth is, 3-ish posts ago, back in March—I was living a before story. Read it here:

I’ll get back to that. First, a moment for joy.

I promise to circle back to some of these images/moments/lovely days, but for now, here’s a few glimpses. If you’re like me, maybe they’ll make you smile. Savor that, like I am, writing this. Joy is hard to come by. Savor it. Vicarious joy is better than none.

Content warning: Brief mentions of medical trauma.

Here’s what I didn’t tell you in that post (linked above):

In February, I met with a new GI. He’s a bit Instagram-famous, but he’s local, too. Last year, he went into private practice, so I made an appointment and subsequently waited ~6 months. So, I sat down on Zoom with him and spent an hour going over my history, symptoms, etc.

Yes, you read that right, an hour. An hour of me mostly describing the past two years—although the argument could be made that the last two years have simply been an apex of an entire life’s worth of symptoms. Two years of debilitating pain after every meal, every drink. Pain that’s been ramping up to happen when I turn over in bed, or when I take a deep breath.

First, he said, “I’m sorry you’ve been going through this.” His words dripped with honesty, as if my rambling had punched him in the gut.

Then, his voice shifted. He spoke with confidence.

“You have MALS.”

“Really?” I said, vaguely familiar with the condition, but unused to a doctor naming anything up front—let alone something rather rare.

He went through the tests I’d get, then the surgeon I’d see. I nodded along, trying to stamp down any hope. How many tests have I gotten with negative or inconclusive results (read: almost all of them)?

The two test results came in. One was negative, the other, had notes that, when Googled, affirmed what the GI had said. “Evidence of MALS.”

Here’s what MALS is: Median Arcuate Ligament Syndrome. Basically, a ligament in my chest is in the wrong place. And because it’s in the wrong place, it’s compressing my celiac artery. Between the ligament and artery, there’s a bundle of nerves, so each time this happens, the nerves light up—pain.1

The surgeon confirmed it a week later and ordered a half-dozen more tests, scans, appointments. For those keeping score, yes, those 6 to 8 appointments I mentioned in March… April-May have held 6 to 8 more of them.2 I’m in the middle of all of these right now.

Waiting.

Hoping.

Praying.

Next Wednesday (May 20th) holds the next step, and it’s a critical one. It’s a nerve block, which will serve as a test-run to know if surgery to remedy this is a good idea. There are several other factors that go into all of this, but it is the first hurdle that I need to pass to potentially get relief.

Yes, that pesky word I found in the same breath as sorrow during Lent.

The last time I was facing this level of medical chaos, I lost hope pretty quickly. With each dismissive doctor, every inconclusive test, all the ways in which I felt isolated and like my life had just stopped.

By the end of it, I just knew that hope was too dangerous to touch, let alone trust.

This feels so completely opposite. Not only because of the confident, caring doctors I’ve been seeing, not only because the scans are conclusive, but because hope feels close.

And so, I’m practicing hope. I’m writing prayers in present tense. I’m repeating this mantra: “be certain.” I’m letting others in on this journey, instead of isolating myself until I see the hope come true.

Even writing this is an act of hope, because I could get to next week and then have to tell you that it didn’t work, that my hopes have been dashed (again). That’s terrifying.

But my word of the year was balance, and if I’m going to balance in this moment, then I’m allowed to be both terrified and hopeful.

If you are a praying/holding-in-the-light-type person, I’d appreciate your thoughts next Wednesday (5/20) morning. Specifically, that the nerve block works and I can eat without pain—for the first time in 2 years—after it.

Thank you for reading this. If you made it this far, thank you. It truly means the world to me that you’d take the time to read this update in particular. Especially because it wasn’t exactly what you signed up for.

What in your body understands deconstruction? Or have you noticed where your body has memories of how your faith has morphed and changed over the years?

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