Complete healing.

[From January 19, 2016: Here’s another from some of the earliest days of The Shitshow, when every day felt like a new indignity, a new diagnosis, and a new reality.]

When a tornado rips through a small town in the Midwest, leveling a trailer park or maybe an elementary school, invariably there will be someone on the nightly news who will thank God for sparing their particular house. It’s a miracle, they often say. After 9/11, pictures circulated of two construction beams, left standing amid the rubble where the towers once stood, that just so happened to be shaped like an old, rugged cross. Look what God spared, the caption read. If you’re willing to look for it, a miracle.

A couple weeks ago, she was having an especially difficult day. At this point, we know that life with a chronic, debilitating illness will be full of good days and bad. It’s now just part of the deal, this new normal of ours, even if the bar for what constitutes a “good day” is sometimes embarrassingly low. But this particular day, well, it was one of the worst yet. So, when her mother asked how she was feeling, a bit more cheerfully than seemed appropriate to the situation, she completely unloaded on her.

She’d just spent nearly two hours pulling bone fragments out of the open sore that now resides where her chin used to be. Her fever was spiking and then abating with such jarring randomness that she was already on her fourth full outfit for the day, the prior three drenched with sweat and tossed in the laundry, now as a matter of routine. She was seriously hungry, too, but was hesitant to eat because of the pain she knew would follow the ordeal of feeding herself. Because it always follows. And then there were the infected lesions, once again started to littering her face and shattering any remaining self-esteem.

“How am I feeling?! Like shit, Mom, thanks.”
“Well, just so you know, I’m believing for complete healing. I’m believing for a miracle.”

Over the last few months, a lot of people have offered prayers for healing. No matter how complicated my relationship with both faith and organized religion, the gesture has almost always been meaningful. I would be a fool to turn down anything resembling sincere good will, no matter the form it takes. Say a prayer, light a candle, send positive energy, or do a healing chant if that’s your thing. Whatever you’re offering, we’re in.

But on that rock bottom day, for whatever reason, the specific expression of prayer being offered amid the destruction — not for comfort or peace or even a partial night of restful sleep, but “complete healing” — felt like more of a tone-deaf insult than a compassionate expression of faith. It felt like a guy on TV praising God for a house still standing when his neighbor had lost everything. It felt like denial.

We’re almost a year into this ordeal now, many months since the very notion of any sort of cure, complete or otherwise, seemed attainable. There’s nothing we’d love more, of course, than to close this chapter with a remarkable story of a miracle that defies medical explanation. On some level, I’m glad there are people who are still standing in the gap and believing for those things, even if (and maybe, especially because) such hope often seems like a luxury we can no longer afford. The reality of our day-to-day doesn’t make room for such conceits, because our energy and our focus is too caught up in a dizzying schedule of doctor appointments and worry.

Sometimes I think about those people who lost everything in a tornado, while a spared neighbor claimed God’s providence, or the folks who lost loved ones when the towers came down in the very spot where a rugged beam cross then stood. I wonder if the trumpeted “miracles” were any real comfort or if such talk seemed instead like it was somehow missing the point. Didn’t they feel a danger in allowing themselves to believe?

Today we added a new diagnosis to the mix, so the fight again takes a new and unexpected turn. There will be more specialists and tests, more paperwork, more uncomfortable realities, and more sleepless nights. It’s not that we wouldn’t love a miracle or that complete healing her mother needs to believe in so desperately. It’s just that right now, in this moment, those wishes don’t bring us any comfort. What we really need is a good night’s rest.