By Kristy Nicolle
My stomach is like a scene from Twenty Thousand Leagues Under the Sea. All churning white caps and hidden tentacled beasts ready to wrap themselves around my heart like a vice.
Except sitting in this waiting room feels like the most dramatic thing I’ve ever done. It’s not the first time, nor I don’t doubt will it be the last, and yet something about this is different than the times before.
No more tests, only answers. Only certainties.
My body aches though, as though I’ve lived a hundred lives before this one. Sleep had not come last night, between my throbbing inflamed ribs that screamed each and every time I took a breath, and my anxiety about this appointment, I was doomed to lie awake before I even pulled up the comforter.
I’m the youngest person in here by a clear mile, and an old man opposite me coughs without covering his mouth for the fourth time since I began my wait in this clinical purgatory. I flinch a little, all too aware of the fact that his germs are migrating through the air like Tom Sawyer down the Mississippi, mischievous and with no intent except to cause trouble.
No good meddling kids.
My dad sits in the seat beside me, despite the fact I’m in in my early twenties he’s been with me through everything, and I couldn’t imagine coming to this appointment without him.
My feet dangle from the overly padded chair, fingernails bitten down to the quick and drumming on either armrest without pause despite the audible creak of my knuckles as I do so. The ticking of the clock feels like a countdown to my doom, and yet, as everyone keeps reminding me. A diagnosis is a good thing.
Knowledge is power.
Once we know we can fight this thing, we can cure what ails you. All I can do is smile and nod, the worry never ceasing but instead opening its jaws wider and threatening to consume me whole
Despite this, I cannot claim them to be wrong. Knowing has to be better than the unknown, right? So then why am I still so filled with undeniable dread?
The man opposite me coughs again, and I hold my breath, my dad rolling his wide brown eyes with a certain lack of subtlety that only comes from years of being a gay screenwriter in L.A.
The clock continues to tick. People walk from one room to another, rushing if they’re dressed in scrubs, or shuffling with the pace of an asthmatic snail if they’re patients. Fake happy smiles and empty flash stunned eyes look down at me from the leaflet rack that’s screwed on the wall at a slight angle.
My jaw tenses as I purposefully avert my gaze, pain shooting through the bone as a welcome distraction to my pounding heart. It flutters unceasingly, an internal butterfly whose effect is the sweat on the back of my neck, the clenching and un-clenching of my toes in my sneakers.
“Kairi…” I’m on my feet as the doctor comes around the corner before he can even get out my last name. He cocks an eyebrow, and I feel the pain of my over-exuberance spread through my knees and shoulders, the toll I’m so unused to paying for simple motion.
“Yes! Yes… uh, that’s me…” I flush scarlet, the walking germ of a man opposing me giving me a look like I’ve just grown a second head.
“Come with me please.” The doctor has thick eyebrows, coffee coloured skin and dark hair, all of which are thrown into stark contrast by the pure white of his lab coat. I hear my dad rise from the chair behind me, and his hand comes to brush the back of my shoulder, leaving a tingle of what could be the start of shooting nerve pain. I stand rooted to the spot despite the fact I know I need to move, stuck in the potential of this moment that will lead to other more determinate moments which cannot be undone.
I put one foot in front of the other after a small pause, my ankle protesting as the sole of my foot comes down hard on the white sterile vinyl of the waiting room floor. My dad holds out a hand to me, like I’m five years old and he’s taking me to have a simple vaccination.
In fact, now I think of it I feel five years old. Soft grey leggings, the only pants that no longer bring me out in a horrendous rash, and a white t-shirt which reads ‘’I’d rather be reading,’ making my youth only more apparent. Too young to be here, inept in almost every regard when it comes to dealing with or taking in any of the information that’s about to come hurtling toward me like an unstoppable rebel force.
The doctor leads us down precisely seven winding corridors in an identical off-white, the scent of over-boiled hospital food creeping up my nostrils from whichever way the patient ward lies and mixing with the sting of disinfectant hand gel.
Finally, after what seems like the journey to the centre of the earth, he stands aside and holds out a hand, gesturing toward an open door on our left that I assume to be his office.
We enter, Dad still pulling me forward, the doctor closing the door softly behind us with a muted click and then sweeping around the left side of his cluttered desk. As I take a seat, I feel trapped despite the high ceiling and large windows that give what I’m sure is an unparalleled view of the heat-cracked concrete parking lot.
He sits in swift momentum with perfect posture of which I’m envious, not looking at me, or my father, but to the computer screen instead.
It might seem rude, but I’m unsurprised. All the doctor’s I’ve seen in the last six months share this quality, a way of laser targeting and executing the point of the consult without pause or falter. Focused on the results of tests, on numbers and quantifiable data rather than the twenty-something year old girl struggling to get out of bed each day in front of them.
“So, Kairi. I have your results from all the tests we’ve run here, and I think I finally have an answer for you.” His words are simultaneously ice water thrown in my face and a friend’s warm embrace as the pounding of my heart grows louder in my ears.
“Well, what is it? How do we fix it?” My dad is the one to reply, not me.
His faded denim jeans and ACDC t-shirt that’s worn to hell and back make him look younger than forty, make him seem chilled and laid back. However, his tone of voice is that of an older man, a man tired of doctor’s offices just like this one, creating an odd impostor vibe I can’t seem to shake.
“Kairi has a rare genetic condition known as Ehlers Danlos Syndrome. It’s a connective tissue disorder. It explains her pain, the fatigue, her heart condition, and the unexplained dislocations.” The Doctor’s face stays impassive as the information shrouds me in a darkness made up of unanswered questions. I frown.
I had been expecting something I’d actually heard of.
“So… what does that mean? How do I fix it? What’s the cure?” I ask, voice trembling as I feel utterly swept away by it all. I’ve been reading about different diseases online despite being told not to, but I’ve never come across this disease, whatever the hell it’s called, not once.
“Well, that’s the thing. There is, at this time, no cure for this condition. It’s something that we will need to manage and keep an eye on.” The doctor doesn’t meet my gaze as he says this, his eyes flicking back to the computer screen instead.
“So… I’m stuck like this?”
The words echo into nothingness too slowly, the impact of them crippling.
The last six months have barely been what you could call a life. Unable to get out of bed, joints snap, crackle, and popping like rice crispies. Fatigue that threatens to drown me in unconsciousness and never let me surface to a state of waking again. Unending pain from the moment I open my tender eyelids until the moment I begin to attempt to sleep.
I’ve had to drop out of college because of this, but I’d always thought I’d go back. Always thought that there was a light at the end of this painful foggy tunnel.
I thought I’d figure skate again, thought I’d get to have a life again, to run and laugh and live without having to pay.
For that’s what my existence has become. A constant negotiation with the terrorist of pain and poor health. What will I trade for this day in the sun? How many days spent writhing in agony, or nights spent crying into my pillow will I trade for this narrow glimpse at what life had once been? What life should be.
How could I have been so wrong?
“As I said, we can manage the symptoms…” The doctor sounds weary, like he’s delivering a speech on the common cold and not some rare genetic disorder that’s destroying everything in my life I’ve worked so hard to build.
“So how do we manage this?” My dad’s voice is like a sword sharpening itself against ice-chill flint. The doctor looks at him hesitantly, and sighs, the bags under his eyes almost as dire as the ones sitting happily under my own.
“I’m going to send you to see a specialist out of state, because I’m really not an expert in this syndrome. But I have printed off some information for you, to give you an idea of what you should expect. You should receive your specialist consultation appointment in two to four weeks.” He still doesn’t meet my gaze as he says this, and I wonder if he’s guilt-ridden for being unable to help, or if he just doesn’t care.
He passes a wad of paper across the desk to me, and I take it, hands shaking with something between rage and despair.
I had wanted answers, but this wasn’t the answer I had been expecting. I wanted a cure, not a lifelong sentence of pain and crippling fatigue.
“So, uh, yes, as I said. Two to four weeks,” he repeats, eyes jumping from our faces to the door and back again.
“That’s it? You’re just going to send us away? She can’t go on like this. Two to four weeks is too long to wait when she’s in this kind of pain!” My dad’s anger is growing to the point of a radioactive rage spill, and I watch his fists clench around the armrests of his chair.
“I’m going to send you to a specialist. You will receive the best care I promise you. In the meantime all I can suggest is Advil or Tylenol for the pain, maybe a heating pad?” He eyes us both over the top of his square cut glasses, nose crinkling in distaste at my father’s tone. He remains the epitome of professionalism, his face an unmoving inhuman mask that cannot fathom empathy.
I think back on the times I’ve tried using heating pads, Advil and Tylenol for the bone deep aches and shooting pains that keep me awake all night. It’s like putting a band-aid over a bullet wound.
“Come on, Kairi!” My dad snaps, glaring at the doctor without restraint as he grabs me by the elbow. I flinch as his skin touches mine, but get to my feet, swallowing down the electric jolt that rocks through my upper arm.
We turn our backs on the doctor as we head for the door, and I watch as my dad opens it with an angry press of his palm to the handle. He leaves it open and gaping wide behind us as we storm down the corridor, my knees and hips throbbing with every step.
Numbness washes over me and I stare down at the paper in my hand as we stride too fast past the whitewashed walls that sing sterile impersonality from every angle.
“Are you okay?” he looks down at me, not slowing his pace despite the fact my hips and knees are screaming in protest.
I shake my head, words lost on me as tears spring to my eyes. Fatigue follows, the pain and stress too much as a fog descends over my mind, making the surrounding light and sound into weapons that the world might use against me.
All any girl wants is a happily ever after, but it seems that isn’t in the cards for me.
I look into the future now, and all I see is pain. My body dictating my every action, taking away my every choice.
I suppose ever after will just have to do.
Did you want to know more about my fantasy infiniverse?
Check out my books-
BOOKS CURRENTLY AVAILABLE FROM KRISTY NICOLLE
THE TIDAL KISS TRILOGY- A MERMAID FANTASY ROMANCE
TIDAL KISS SHORTS AND NOVELLAS
THE ASHEN TOUCH TRILOGY- A DARK FANTASY ROMANCE
Do you suffer from Chronic pain or Invisible Illness? Check out my spoonie support group here.