We started on solid ground, our footing sure, each step of life’s terrain mapped out in our heads. There would be rough patches, we knew. Our expectation, though, was that we would traverse them all and reach the peak.
But things shifted in ways we didn’t anticipate. A crack formed; a fissure so narrow, at first, we just kept going, stepped over the little aches in our knees. Hopped, while we still could, around that fuzzy feeling in our heads. We ducked under the cover of over-the-counter pain killers and trudged along, our ears ringing so loudly we never heard the avalanche of hurt tumbling our way, intent on knocking our feet from under us.
Then we were dizzy, shaky. We could feel the tremors when we held a pen or slipped a spoon between our lips. Our world became unstable, and we found ourselves grabbing hold of walls, furniture, the person beside us. Our steps became arduous from hoisting our limbs over the obstacles that kept showing up in our path. Things that, a few months prior had been only pebbles, were now boulders, immovable, expansive; blocking the whole trail.
How had we misread the signs of our inevitable cave-in?
At first, it was just loose stones, bits of gravel. They only trickled and sometimes didn’t move at all. If it had been a constant rumble, we’d have recognized the danger, but we had no idea those little bits of tumbling rock were a part of something bigger. No clue they were pieces of our very foundation.
We turned to science, to the detectors and fixers of bodily earthquakes. They attached sensors to our brains, hearts, nerves. They looked diligently for any disruptions inside or out. When they couldn’t find one, they made guesses that they called, “educated”; pulled blood from our veins and ran test after test, all-the-while warning us that a positive result didn’t prove we were sick, and a negative didn’t prove we were well. They promised to look at the whole picture; make a determination, let us know how long before we would fall apart.
But science was stumped, or just ignoring the data. Either way, too late came too soon, the crack became a gaping hole. It sucked us under and our productive, happy lives crumbled.
At first, we braced ourselves. Surely, there would be some room for escape. A simple treatment; the right pill.
When there wasn’t, and the wreckage was so much we couldn’t comprehend, we remained determined to dig our way out; move every stone out of the way. We would not eat gluten. We would not consume dairy. We would not partake of sugar. We’d get enough sleep, do yoga, drink water, meditate. We would eat Keto, Paleo, Autoimmune. We would not, I repeat, not, get stressed.
But it was so confusing. We’d just gotten rid of the pain in our feet, hadn’t we? Just yesterday it was better, but once more, they felt as if they’d been punched all night. And two days prior, wasn’t our thinking clearer? We weren’t sure. We thought it had been, but we can’t remember, not with any clarity. We excavated symptoms only to watch our clear, clean space fill again as they rolled back in or new ones took their places.
We asked our scientists over and over, “When will I get better? When?”
At first, it was scary; dark, lonely, silent. But after a while, our eyes adjusted to the gloom; our mind to the quiet. Finally, we accepted our place in this crumbling heap; stretched out our arms and began to gather the fragments, pulling them close; wrapping them around ourselves like a cold, hard blanket.
What else could we do? We had to hold on to something, and since this disease seemed unshakable, we grabbed on to it and embraced our new “normal.”
“It’s better this way”, we reasoned. Buried under the natural disaster of sickness, no longer would we have to do the things that had become so difficult, like talking, thinking fast, getting jokes, feeling sympathy, sorrow, or joy. Instead of trying to discard the stones, we began stacking them with precision. We built a fortress, and tucked away, relieved no one could see us.
We couldn’t drive. Our road was filled with potholes and rubble. It was too hard to remember what a red light or a stop sign meant; too hard to recall the way home or where we were. So, we got cozy in the passenger seat; leaned back and watched things pass by in a blur.
We tried crawling out each day to go to work, but the weight of our symptoms – – too many to count – – was too much, the load too heavy to add the responsibility of bread-winning. Our brains were filled with dust, no room for thoughts, problem solving, or words. So, we quit or were let go. At least that left time for hobbies – – as long as they weren’t too strenuous or didn’t demand clear thought.
We discovered a small, but bright light inside our burrow. A screen held relief from complete isolation. We weren’t exactly alone. Even in the deepest, darkest place, we could find a signal; a connection. There were people like us hunkered in the ruins. We couldn’t see them face to face, but we found friends, a tribe, a community of like-diseased sufferers. From our corner, we could call out and find validation, encouragement, ideas, and ways to feel a little better sometimes. We could say, “Hey, it’s a full moon and I feel like crap.” Or, name weird symptoms like when our ankles feel wet for no reason, or our lips have an imaginary bug crawling on them that won’t go away no matter how hard we rub. We could proclaim these without fear, knowing their voices would echo our own.
All those things were long ago.
Now, this fracture feels permanent; like part of us, or more often like who we are – – a brittle shard, once whole. We still turn to the scientists, but more and more we feel they’ve lost the patience to uncover our past. Maybe they’ve done all the digging, brushing, and cleaning they can. So, we’ve stopped asking ‘when.’
Instead, here in our dark, hushed places, we whisper, afraid to say it out loud, “What if I get better? What if?”
It happens. Sometimes, someone finds a way out. They stand, stretch, and smile, looking at their limbs like they’ve just shown up. Wide-eyed from a suddenly clear mind, they buy work clothes, running shoes, school supplies; get new hairstyles, make plans, make friends.
We peer between the slabs of our bunkers; watch their strong arms reach up until their shadow-self is washed away by light. We watch until they’re gone. They’ll be back now and again to tell us what it’s like out there, give us pointers, share what worked for them, helped them rebuild. On hopeful days we’ll soak in their wisdom, on days of despair, we’ll only hear Charlie Brown’s teacher.
So, what if we get better?
What if one day, we are strong enough to ascend? What if the pain, fatigue, mental fog, numbness, tingling, anxiety, depression all stay underground and we, somehow, rise to the surface? What if we can make it out clean and fresh, no trace of grit clinging to our flesh; no sludge clogging our minds? No second thoughts about going out with friends? No hesitation about volunteering?
It’s hard to imagine. Some of us don’t have the strength to stand, let alone climb out of a tomb. And better isn’t well.
If we find our footing and move forward will we be looking over our shoulders, wiser now, to the threat of falling rock? Our steps will be wary because we won’t want to wake the giant. We know what it’s like to be swallowed whole and will do anything to keep ourselves free; anything to stay out from under.
Our eyes no longer care for the light, our ears, the noise. We’re not sure we can endure the world above ground. Our brains have failed us so many times we don’t trust them; don’t believe they’re up to the challenge of living in the world of wellness. We fantasize about jobs, parties, picnics, or maybe a club. But what if our panic comes with us? What if it never really leaves? It might be impossible to speak the words we need or to listen and understand the words of others.
And what of our friends still living in the throes of a long, long illness? They’ve meant so much to us, how can we leave them behind? No longer share with them the strange communion of affliction?
Remission is a permanent home on a fault line. Always at risk, the cost to keep it standing is high. The hatches are never completely battened down so we reinforce in hopes we’ll never again have to rebuild from the ground up, but this is where we live, and no matter how badly we want to, we can’t choose a disease-free zone.
Standing in a place that’s not disintegrating, where everything is exposed, we will look unstable and unsteady sometimes, but we know how far we’ve come. We remember the initial collapse, the dementia, the hallucinations, the pain. The days of endless sleep and nights of relentless wakefulness are fresh in our minds. Sometimes, those things are still with us in flashes, moments. Some days they spew up from where we’d buried them. To a degree, some of them are always here.
But, we fear those who watch, will only see us as less than we were, unaware of how much more we’ve had to be, in order to keep trying.
Lyme feels like this.
Romans 8:23b “. . . for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us.” (NLT)