Dear Ms. Hillenbrand,
I stand before you, eyes downcast, shuffling my feet, crushin’ like a middle-schooler. And as I do, I am aware that I can stand. For you, often, cannot. You have been housebound, bed-bound, hell-bound for much of a quarter century.
You are sick. You are a loser. You are a waste of space.
It is my brain’s refrain when I am bed-bound, when physical pain crushes all rational thought and my heart accepts this mantra of defeat. It was in one of these moments, when I was lost in my own bed that distraction as cyber-surfing became of the highest order. And I stumbled upon your national award-winning essay: A Sudden Illness.
Open-mouthed, I scrolled through your torture. Struck at 19 with Chronic Fatigue Syndrome, the shamefully misnamed condition that suggests you are little more than tired. Such branding does not incorporate your mercury-smashing fevers, swollen glands, bone pain, headaches, mouth sores, and three-hour naps after taking a shower. Unable to get up, turn over, or sometimes, even open your eyes. Exhaustion that restrains you, as if buried under damp clumps of soil you’re unable to shake off.
As I closed my laptop, sending you back into cyber space, I wondered. Do you swallow your tears because the cost to your body would be too great? Or it is less effort letting them roll down your cheeks onto the stale sheets below?
My sudden illness began in March 2015. One innocent night, I scraped at itchy forearms with an old pumice stone from the side of the tub. Two days later, angry red dots swarmed beneath my defenseless limbs, imprinting my arms, and then legs with the color of pain. Three years later, the rash is gone, but the pain remains. 18,400 seconds a day my nerves flare with a hot-knife needling, shingles-like agony: Burning. Itching. Pinpricking. Clothes have become the enemy, and sleep a “fingers crossed!” situation.
Three dermatologists, a neurologist, nephrologist, allergist, immunologist, acupuncturist, naturopath, over 20 discarded medications, ointments and oils, a night of 40 dermatologists called Grand Rounds (for the record, nothing grand about it) and my Cedars-Sinai transplant team became the planets around which I orbited, undiagnosed. Under this unfamiliar sun, I was blinded to everything but research, phone calls, and pharmacies. I lost sight of my laptop. Lifting a finger to type seemed like a luxury reserved for The Symptomless.
My condition is not shingles. It is not autoimmune. It is not a virus or infection. Nor any condition any East/West doctor has ever seen. It is their nothing. It is my everything.
When I found you, I was stuck, trying to finish my book. I had time. An award. My husband’s support. Even a muse by way of an old basset hound named Wahlter White McIntyre. But once again, my life was steeped in the medical world, and I was drowning in the brew.
It is a fancy-tickling irony that in 2018, my two kidney transplants and five-year recovery from drug and alcohol addiction are the least of my worries right now. In 1987, my life as a sick teen was hitting what I believed to be its apex. My six-year journey down Chronic Kidney Disease Lane was coming to an end. End Stage Renal Failure to be exact. I was 19 years old, and my kidneys were operating at 3%.
From my petal-pink, white-stemmed canopy bed, I lay dying. The bed's bright and hopeful sheaths were stiff, alive, like the folds of a little girl’s party dress. For hours, I would stare at the clock on my desk. When the numbers blinked forward from 4:59 pm to 5:00 pm, I rallied, sliding to prop myself up against the wall, knowing my mother was on her way home.
My day had been four, maybe five hours long. We were in collusion, Sleep and I, on How to Survive Kidney Failure: More sleep, less Life. Toxins had commandeered my bloodstream. Martial law-like edema had seized control of my flesh. Every move an Everest to overcome: Brushing my teeth, changing pajamas, or letting the dog out to pee. Impossible to walk without a quickening of the breath. Even hobbling the few steps toward the television felt worthy of staking a flag into the carpeted den floor.
Alone, I’d curl into one half of the bunk bed of my youth Mum had reassembled. My young heart pinged with a curious guilt as I reached for the remote. My head filled with a dark refrain. You are sick. You are a loser. You are a waste of space.
At 19, I did not know I could write. I could no longer read. Paragraphs spread out on the page like computer code I could no longer decipher. There was no 24-hour news cycle. No smart phones. No social media. No NY Times award-winning author’s essay to stumble across.
But there was serial TV, as over-the-top 80’s big as I had become small. Defeated, I clicked the remote, aching for connection, to be part of a story, anyone’s story but my own. Even one as basic as Girl and Girl fight over Boy. Through the flickering screen, this teen soaked up every delicious drop of Krystal and Alexis’ Dynastic, ratings-busting, lily-pond fight. Partly because I had no energy to splash around in a pond, but really, because everyone else in North America was watching with me.
This solitary confinement was but two months of a sentence that would be fully pardoned by the luck of genetic draw. In January 1988, my mother’s kidney was attached to my ureter, roto-rooting out the toxins, gifting me a new lease on life. You spent two years in this kind of meticulous negotiation with your body.
Oh, Laura. Dare I hope you wish this kind of suffering on others? For just one day. Long enough to hear them cry out, perhaps beg, for relief. Or maybe a few times over a week? Or even one cruel month. Do I? Yes. I do.
On this I am clear. There exists a distinct imbalance between the Sick and the Healthy. The Healthy hold all power because they can walk away. From our broken bodies, of course, but really from the fear our stories reflect. That Illness might one day happen to them.
When The Healthy inquire after me, with head-tilting emphasis on the second word, How ARE you? I have two options.
One: To answer, OK or Hangin’ in there! even as my soul tantrums, pummeling the air with defiant fists, Not true! Not true! Not true!
Two: I unspool my medical tale, launching into a description of the immunosuppressives prescribed for my now second kidney transplant. The pilot light of interest that flickered in their eyes vanishes. Their relief feathers across my skin as they turn to go. Occasionally, before a turned back ends The Conversation That Never Was they spout, Well, you look great! It is my undoing. My effort to look good is calculated resistance to Undiagnosis, stress, and pain, but it backfires. When the Healthy note how great I look, it’s as if they’re waving an invitation to join them beneath my nose, yet when I reach for it, I claw nothing but air. I can never RSVP “Yes.”
I know, Laura. I know. It isn’t fair. They are trying. It’s an impossible game to win, because when they forget to ask how I am, I feel just as alone.
Maybe you are lying in your bed right now, fuming, your laptop jerry-rigged the way Borden used to so you can read this.
At least you can stand and see their eyes glaze over!
I watch you in interviews, Laura. The way you hold your body to compensate for vertigo that conducts your life like a Shostakovich symphony, all wild arms and screeching violins.
It looks like the room is moving around me. My desk is moving. Everything looks and feels like it is moving. It is hell.
I know of the constant shrieking sound in your ears. My world not only burns, but also buzzes. Some days the scraping noise inside my brain is so invasive I read my work aloud over the insect-like cacophony to understand what I have written. Perhaps as loud as the plague of cicadas that fell against your summer window as you watched, trapped inside your body, house, hell. Were you envious of their energy before they smashed against the glass and fell onto the ground?
I have been lost inside your momentary darkness when you fingered 30 blue pills on your mother’s bedspread. Once in a while, when my flesh is burning too hot for me to feel, and my ears ring too loud to hear, I wonder. Can I do this any more?
What I think about is a life where I don’t have to monitor my body.
I had to find a way back. To story and the connection I find therein. Back to the ratings-busting, water-splashing sensation of story that connects us all.
If your body of work was inspiration porn (I can write that because I’m chronically ill), your essay was the money shot. In the obsessive re-reading of your words, in soaking up your story, I grew strong. Using ice packs for my pain, white noise for my tinnitus, and a fan on my skin. An Infrared sauna now stands in our living room. As I cook, I scribble until detoxified beads of sweat smear my glasses, and drip onto the freshly scratched words below. Naked I type, or in my husband’s underwear, intentional, so as not to brush my skin. When its waist snapped, I attached a clothes peg to hold them up. I would think of your jerry-rigged laptop and write on.
Your pain tempered mine. Your voice silenced It: You are sick. You are a loser. You are a waste of space. And I wrote on to The End.
On my wall, I have your picture pinned next to this quote. And when I feel too small for my circumstances, I read it to find my way home.
My illness is painful and excruciating and causes more suffering than I can possibly describe.