Not So Wonderfully Made

When I was in second grade, my teacher made the class memorize Psalm 139. The whole chapter, all twenty-four verses — no easy feat for wandering little minds. But we had many weeks to accomplish it.

In an actually Tom-atypical way, I put off the task until the night before. I remember rehearsing the verses, over and over, in some dark parking lot with my dad. I’m not sure what we were waiting on, but apparently we had lots of time.

The next day I got a perfect score on the memorization, the only one in the class to do so, and my teacher marveled over how I did it. “You must have memorized a little at a time,” she said.

“Yes, that’s right,” I lied for the class.

And so you see how depraved I was, even at seven years old.

Some of Scripture’s most popular verses come from this psalm, particularly midway in verses 13 and 14:

For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made.

Fearfully and wonderfully made — such Christianese lingo. In what ways do you describe anything with either of these adverbs?

I’ve been stuck on these two verses in the last two months. These “months of the wormhole,” I’m calling them.

Mid-April to mid-June did not exist for me; or, rather, I feel it appeared that way to the outside world. I stopped blogging, I stopped podcasting, I stopped tweeting as much, and I stopped seeing other humans. Digitally or otherwise.

Those two months certainly existed, though, taking me to some painful places. Insane places I never envisioned encountering this side of Paradise, fallen though I already knew it was. Is.

They are the months my body gradually and then nearly shut down. The months that have me questioning just how wonderfully made I am.

~ ~ ~

By now, you might have heard I have an autoimmune disease. And if you hadn’t — well, spoiler alert.

It’s called Granulomatosis with Polyangiitis, or GPA, a form of vasculitis that attacks blood vessels all over the body, primarily those in the sinuses, lungs, kidneys, and joints.

The cause of this disease is unknown; there is no cure. Remission is possible, but relapse one day is likely. Regular attention is needed.

For two months, I felt the rampage of this unknown thing awakening inside me, splitting my ankles and knees and sides and sinuses. Congestion, headaches, and utter immobility. A swallowing lethargy unlike anything I’d ever felt.

I couldn’t walk, couldn’t breathe, couldn’t sleep. “Couldn’t” — the word of my wormhole as I disappeared from humanity.

By the end of those two months, hunkered down at my parents’, I honestly couldn’t do anything but survive. “Just stay alive” became my only mantra each day.

For someone who’s never had his wisdom teeth removed, never broken a bone, never spent a single second in a hospital beyond his birth, my body practically slammed to a halt. Then started turning backwards.

My blood levels anemic, my face colored some shade of ashy yellow, I finally checked into the ER and got wheeled into a room with a bed. I swung my bum leg onto it as IV tubes were funneled into both arms, and fluids started pumping me back to life.

I was told to turn to the side and pee into a milk carton, even though I didn’t really have to go.

“Trust me,” the nurse said, “you don’t want me to get your urine the other way.”

And so I went.

For half-hours at a time, I lay in curtained silence beneath a screen with flashing numbers and zig-zagging lines, just like the movies. A blood pressure wrap whirred to life every fifteen minutes and squeezed my arm like a reassuring hug. Any time I adjusted positions on the bed, or needed to lean over and pee again, the machine beeped and beeped until I calmed back down.

I drifted in and out of sleep as antibiotics allowed me to breathe from my seared nose again. Sweet relief.

I received a blood transfusion at 4am to bring the light and color back to my body. A huge thank you to whomever’s blood now runs through my veins.

It took days of bloodwork to determine what was wrong with me. I got pricked every day for a week, and the same nurse said the same thing every time she drew my blood: “Oh, honey, I’m so sorry. You must feel like a human pincushion.”

Yes, honey; yes I do.

And then there was this gem from another RN: “So, all of those pricks to your arms are gonna feel like nothing compared to this COVID-19 test. I’m sorry, it’s going to feel like I’m jabbing a sword through your nose into your brain.”

And, reader, it was exactly like that. I’d not wish that procedure on my worst enemy.

My COVID-19 test came back negative, and they also tested me for tuberculosis based on a concerning cavity in my lung, the place I was losing all my blood and life. Also negative.

And so I waited days for answers.

That first night out of the ER and in my new hospital room, my urine was needed again at 4am.

And then my sputum in a jar at 5am.

And then a blood drawing at 6am.

Was this really my life now? Giving doctors literal pieces of myself every hour, on the hour?

How old was I again? Wasn’t I just living amid the healthiest stretch of my life?

After five days in the hospital, I was finally diagnosed with this autoimmune disease, and the letters “GPA” no longer conjured accomplishing academic feelings. Now they felt like something of a death sentence, or at least a massive misunderstanding with the Divine.

If I’m so “fearfully and wonderfully made,” then why is my body literally waging war against me? Attacking my own blood vessels, enflaming my joints and sinuses, infecting my lungs, wreaking utter havoc?

The more I linger on that four-word phrase from second grade, the more despondent I grow. Confused, if not infuriated.

Maybe there are indeed other awesome things about me. Talents and abilities and personality traits and the like.

Sure, of course there are.

But my own immune system attacking perfectly healthy body parts is not one of those wonderful things; a compromised immune system during the pandemic of our lifetimes, no less.

In the weeks since I left the hospital, I’ve truly counted my blessings. That the disease was caught and diagnosed as early as it was, and that I had a restful, actually enjoyable time in that small-town Georgian hospital (save the COVID-19 test).

I miss my adjustable hospital bed, I miss late-night graham crackers and ice cream from the sweetest nurses, and I miss just relaxing and not worrying about writing schedules or gaining a wider audience or having enough friends or otherwise building anything more of my livelihood back home in Asheville.

Life was slow and somehow less complicating in that hospital, despite the eventual diagnosis, and I yearn for more swirling simplicity in my life.

While confined to my hospital room, I caught up on a TV show that featured a young male character also wired to a hospital bed and wearing an eerily similarly patterned gown as mine. He was dying of AIDS, sweating and sputtering and groaning, and it was gruesome to watch.

I watched his eventual death scene and thought of everyone suffering with things far worse than me with GPA. Cancers and comas, strokes and paralyses. I actually lost an uncle in the middle of my health collapse; his final weeks and days sounded rough.

I wondered why I’ve been allowed to suffer less than them. Or why my particular road to remission is, theoretically, more optimistic than many others in my boat.

I don’t know. I honestly don’t. And I refuse to give simple, sweeping, Christian answers to enormously complex and painful problems. Viruses, diseases, shootings, racism, and more on just another Monday in this world.

I refuse to say with 100% confidence that I am fearfully and wonderfully made if my body will no longer do what it was made to do, what it did efficiently for 33 years.

I refuse to sugarcoat the confusion; I’m confused.

I refuse to feign peace; I’m consumed by thoughts on this disease. All the doctors’ visits in the years to come. All the new medications and treatments and how they’re already affecting me in any adverse ways. The paranoia of relapse even after I enter remission, assuming I do. All the new finances that are adding up.

(You can click here to contribute to my new medical expenses, if you’re able. I’m grateful for all who have already given. Humbled, too.)

I don’t feel wonderfully made right now. My autoimmune disease makes me feel newly flawed. Like my Designer forgot to quality-check my body before He sent me to the womb, apparently knit with this broken strand.

And what of all the others born into bodies in far worse shape than mine . . . ?

“We live in a fallen world,” is a cruel answer for parents of special needs kids or infants needing surgeries just to keep their little hummingbird hearts beating.

Is Psalm 139 true, or is it not?

Amid all these existential questions, it’s quite something that the song below from Pat Barrett has slammed into me. God often speaks to me through music, the right song at the right time, and I refuse to believe it’s any “coincidence” that I’ve heard this particular song, again and again, for three months, even before I knew my situation for what I now know it.

The song is anchored in Psalm 139, and I want to re-believe those childhood memorizations from a dark parking lot with my father.

And you know, with time, I think I will. I hope I will. I’ve seen too much goodness bloom from suffering, in my life and others’, to believe this “fallen world” is all there is.

Someone’s writing a story; we just don’t yet see all the pages.

For now, though, I think it’s important to feel the feelings our Designer has given us. The triumphant tones with the bleeding groans. To be genuine with Him and also with our fellow man.

To “struggle well,” as I’ve learned to say.

I’m hopeful for more perspective in these months and years to come, and it will be a years-long healing journey ahead for my body. I’ll certainly be sharing more as I learn and process.

But for now. I want to be splashed onto the canvas or spun onto the wheel. That whatever suffering I’ve already felt or the suffering yet to come may be used to point beyond this flawed, broken body.

Could even point to something, dare I say, wonderful.

~ ~ ~

“Canvas and Clay”

In my mother’s womb

You formed me with Your hands,

Known and loved by You

Before I took a breath.

When I doubt it, Lord, remind me

I’m wonderfully made.

You’re an artist and a potter;

I’m the canvas and the clay.