Once upon a summer, I told someone I was dying. In every way you would expect the words of the text message to quake and shiver under the strain of their ominous shadow, they did not. It was me, instead, who shook, as minute by minute I withered, wrapped like a mummified caterpillar in industrially pale sheets. The synthetic concern masking disbelief over the terrors of pain I recounted in my cracking peep didn’t hide the truth: I was going cease to be, here in this most esteemed medical facility. Numbers skittered from column to column, indicating a body slipping ever closer away, but not a single doctor could waste her pretty to know why.
Without calories, with then still unknown bacteria owning me like an abductor, she would unwrap my spindly form and lie my bag of bones in the grass. Unable to open my eyes, the nearby fragrance of roses shot daggers through me, filleting my sloping core. Had there been any trace of sustenance tucked like treasure inside, it would have been expelled. But there was nothing. Not a drop of water, not a morsel of life, just invisible scalpels scoring me beneath a tidal wave blue Palo Alto sky.
Panic like a pastry dough rises up within the furnace of my core, swelling too far past the chrome perimeter, just as my insides have beyond my bones. I’m in trouble. I’m waging a war with crafty invaders that shift imperceptibly with the whisper of the wind. They have me like a loaded gun, pointed in a dozen different directions, all of which are directed at me. I am the bullseye of an easy target.
Society prescribes a code of honor built upon deception. Cloak your pain with clichés, deny that it’s not pulverizing you like a wood chipper. So obstinate is the nagging ideology to throw glitter on pain, that even I often coat my dissenting lips with a shade of pleasantry. I’ve learned that to do otherwise, to expose the chafe of discord like sandpaper to my flesh, is to watch familiar faces scurry away and never come back.
I’ve had enough of that broken record. Consider this an invitation to wear your torture like a crimson letter; to scream and bemoan the injustice roiling within; to sweat poison profanely. Because to engage a reality that is anything but these truths, denies the spectrum of what it means to be human.
While riding the tide of a debilitating Herx, I wrote my friend this poem. I thought it equal parts inside joke and honest plea for company; a verbal cocktail to both illuminate my gripping fear of being alone in my body, yet mask the severity of my loneliness.
Feeling half past miserable, the corkscrew drills of pain only seemed to dive deeper when not only did he turn my invitation down, but also scoff at my supposed precarious reality.
I don’t invite him over anymore.
Pedantic semantics have me all in a tizzy
I’d fancy a kombucha
But it’s just too fizzy
Out in the boondocks
Maybe you are chiseling
Canines or riding a John Deere
It really doesn’t matter
I just wish you were here
I know it it’s a trek you have recently driven
But in your company it’s more like the land of the livin’
The CDC expects me to accept that there is no cure for the constant barrage of symptoms induced by Lyme Disease and coinfections. They expect me to accept that insurance does not have to cover my treatment because what I have “does not exist.”
Instead, I have accepted that the CDC Koolaid is toxic. I have accepted that God has given me a voice, and my voice will be used to join a chorus of others advocating for better testing, treatment and health insurance coverage.
I have accepted that I am stronger than I ever knew … I am a Lyme Warrior!