by Nicole Wells
—— ——
Book One of the Five Elements Series
ISBN 9798657496222 (Print Edition)
Copyright © 2020 by Nicole Wells
All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.
This is a work of fiction. Names, characters, businesses, places, events, locales, and incidents are either the products of the author’s imagination or used in a fictitious manner. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.
To my husband and to my children,
who teach me how to love
{ Part One }
When I let go of what I am, I become what I might be…
– Lao Tzu
chapter 1
Private Medical Practice
Silver Spring, Maryland
June 2017
I'M WAITING IN THE EXAMINATION ROOM. I've moved from the exam table to the plastic chair at its side. I feel like I have more fortitude here. It's a little more familiar and less lonely than being elevated and exposed on the exam table. My mom is still in the waiting room. I didn't really think it would best for her to be here. I mean, Jesus, dad only died a year and a half ago. But what if it's positive? I wouldn't be able to drive myself home after that. And I couldn't ask a friend. It's just ... too much. Too personal.
I also moved to the chair because every time I moved on the table, every fidget, every deep breath, caused that damn paper to crinkle, like a mocking echo of my nervousness. A refrain to my thoughts. I decided I could do without the added exclamation of the too-loud crinkle in the too-quiet room.
My thoughts circle around and around, only pausing when I wonder how much time has passed. I refuse the temptation to check my phone, but then lose the fight to keep my eyes off the clock on the wall. It's been three minutes. Goddamn, but the brain can think a helluva lot of thoughts in three minutes.
Happy birthday to me.
My name is Enya. I'm 18. Newly minted. Just a couple weeks ago, actually. To most kids, that means another degree of freedom. Moving out of the house, entering official adulthood, starting the rest of their lives, maybe beginning the independence of college. To me, it means I get to take a test.
A genetic test.
I've been waiting my entire life for this test. No, I've been waiting my entire life for the results of this test. And I can wait a little longer. I think of not looking at the clock and end up looking at the clock. Another minute has passed.
Are these my last minutes of freedom or the beginning of freedom? The shadow of a death sentence will either become real or dissipate.
My eyes drift to the clock again. Thirty-two seconds have ticked by.
I focus on benign facts. Did you know that about 300 million cells die every minute in our bodies?
And that we replace about 48 million cells a minute?
Or that every few years most of our body has recreated itself?
Or that most of our body is made up of stardust? Everything in our bodies originates from stardust, which is still falling and still recreating us. There’s something beautiful in the impermanence of us from the eternity of stars. I wish that thought could bring me the reassurance it usually does.
Did you know that I want to be a doctor? I know exactly the kind, too. I want to do Integrative Medicine. Yeah, all that kooky stuff. I love it. I really believe I've got my head screwed on a little tighter than my mom does since my dad died last year. I credit my getting acupuncture and homeopathy. People know it works, too. That's why it's so popular. I'm gonna be part of the movement that brings it to the forefront.
Despite waiting for it, the double rap on the door startles me, and Dr. Yee strides in. I could have chosen a different doctor to tell me my fate. A genetic expert in a comfy conference room. But Dr. Yee is my family doctor who’s a special combination of straightforward and kind, and I trust her. She grabs the black wheeled stool and sits, leaning onto the examination table, facing me. There is a computer screen hiding my medical records beside us, but she doesn't log in. I want her to. In my mind — I've prepared by imagining this playing out, and I used our prior visits as fodder for my fantasy — she logs in. She shows me what it says. Sometimes it's printed out; in my fantasy that usually doesn't bode well.
She is staring at me now and I desperately, unreasonably, want her to show me the computer screen. I don't want her to tell me directly. Give me a buffer, let the windows to my soul have some privacy. But the only shutters to my eyes are my eyelids, and my face feels frozen, eyes wide.
She leans even closer and paper crinkles. "Enya, I know you are prepared for any answer. You've had extensive counseling."
I've had, and I'm not. My dad had Huntington’s disease. It’s a fatal disease that’s passed on to your kids. His mother had it and he had a fifty percent chance of having it, just like I have a fifty percent chance. My dad decided not to get tested, but I want to know. So I had to go through a lot of counseling to get tested. Since there’s no cure. It’s not a pretty way to go, but I’d like to fortify myself if I can. But I’m not braced for this like I thought I would be.
It's like when my mom gets her mammogram and then freaks out until the test results come. If there's cancer, it's been there. It didn't magically appear on the day of the mammogram. The test just brought the possibility front and center and she's out of her mind with worry until she gets the results. There's something in the knowing that makes fear manifest. Ignorance is bliss.
So I’m here, willingly giving up my bliss, and freaking out.
Because my dad started having symptoms on top of a midlife crisis and ended up killing himself.
Because the knowledge catches up to you. It would be better to get ready. Dr. Yee said I’m prepared.
"You are prepared for this," she repeats. The exam table paper crinkles sound their exclamation point, now like a cheerleading section, but I don't need an audience. She's staring, and I think she expects me to nod. I'm still frozen.
"Enya, it's positive."
chapter 2
THE BOTTOM DROPS OUT and there's a roaring in my ears. I think I'm going to throw up and I don't care. I couldn't move if my life depended on it. What life? Oh my God. Oh my God.
She reaches out and grasps my hand, a tether keeping me from falling further into the abyss. She's modeling deep breaths and gently squeezing my hand and her eyes are trying to catch mine.
"This isn't the death sentence it used to be. We have great treatments for the symptoms."
OhmyGodOhmyGodOhmyGod. She's got to be wrong. Every test has its false positives, right? OHMYGODOHMYGODOHMYGOD!
"Enya, look at me." My body registers her words and follows her command without the compliance of my mind. Her kind brown eyes hold me steady. She hasn't moved, hasn't changed except to clasp my hand, since she first sat down. "Enya, take a deep breath in. And let it out." I siphon in air through stiff lips. I feel like a scarecrow, a mishmash of ill-fitting parts about to topple down. I'm shaking. My eyes are leaking. Deep breath, she is saying. My breath is a ragged and staccato in and out, like I'm learning how for the first time. I feel if I stop this breathing I will fall apart. I realize I am squeezing her hand when wetness plops on our grip. Deep breath. The echo of her words is resonating in my mind, like sounds heard under the ocean, registered but not received. Breath, breath, -athhh, -thhhhHH.
Eventually, in the quiet of this rhythmic space, I see her
again. Her image blurs, I blink a tear free, and I see her again. She squeezes my hand once more.
"Enya, you are the same person you were when you walked in that door."
We've talked about this. She's repeating things we've talked about. Like my wooden body, a wooden automaton mind numbly clasps onto the concept and holds it close. I nod. The ocean spills from my eyes, a river down my face. But I'm granite now, my face, my limbs, heavy, frozen, immobile. Cold and detached. Only a small section of my mind is whirring, not enough to run this body, but enough to grasp onto each lifeline of thought she feeds me.
"There is no one hundred percent in medicine. We have best guesses. And our best guess is that you will be able to have a full and complete life. You can have a career and a family if you want." Yes, we have talked about this. I thought I was prepared. I thought I had taken it all to heart. But somewhere, some dark unconscious passage along the way, I skirted away from letting the possibility fully sink in, like thinking about it would tempt fate. I thought I was prepared, but this... this is riding out a hurricane on the makeshift raft of a door that is all that's left of the house you knew.
She goes on, but trivial thoughts of my college applications occupy my stupid mind. It’s deteriorated into a hamster on a wheel, scurrying round and round. What a waste of application fees. What a waste of time editing all the application essays. What a waste...
My brain sounds an alarm as it hears the word “anticipation.” This is medicalese for “it could get worse with each generation”. Such an ill-fitting, stupid word to take the place of “poor prognosis.” I remember talking about this too. It's because it was my father that had it, not my mother, that I might have it worse and symptoms might start earlier.
Wow, the measure of good now is like a ruler through bug eyeglasses, some fractured thing repeating and magnified in its power over me, mocking what I used to know and how things used to be.
She mentions my mother and I surface from the abyss of my thoughts. Do I want her to come in the room with me now? There is an appointment with the counselor to go to. We earmarked the time, but I'd hoped we wouldn't use it. It's strongly recommended I have a loved one with me. I fought it before, with all the hallmark independence of youth, but I see the sense now. I force my wooden head to nod.
Dr. Yee cracks the door open and talks to someone in the hall. She doesn't leave me, she doesn't let go of my hand. I feel like an invalid with her concerned vigilance. I will never know what it's like to be old, but maybe I am getting a glimpse now. What weird thoughts. I think I am losing my mind. Maybe this is like being old too. I guess I'll never know.
——— ———
IT'S A QUIET DRIVE HOME, two hours and a lifetime later. A storm has rolled in and I want to curl into an exhausted ball. Retreat into a timeless cocoon and face it all tomorrow. In some future tomorrow where I can handle it.
But I feel I have to hold it together for my mom. I've never been as close and open with Mom as I was with Dad, but I do love her. And my mom has been so fragile since my dad died. She's the one that found him. She's the one that used all her energy being stalwart in the face of society's shame over his suicide. I saw her hold it together for me in the light of the day and then crumble each night. I harbored an odd fear that she would try to kill herself too.
Caring for each other helped us pull through, though. We were a bridge together, an arch. Like the engineering principle, we could take the burden better when we leaned on each other. She did her version of strong for me then, as best she could so we wouldn't fall down. I think I have to do strong for her now; she can't take another hit. So I tense my muscles and resist the urge to give in to exhaustion.
I don't want her to know, but deep down I do need her to bear more than her share. I need her to be the strong one. This strength of mine is an exoskeleton, a shell that's starting to crack.
I continue staring straight ahead as the car plows on. She keeps driving and we're both silent because there is nothing and all the world to say. If we talk we will say it all. And neither of us can withstand the force of those dark thoughts right now.
It's quiet except for the pings of rain all around. I let myself be mesmerized by the swish of the windshield wipers. I watch the drops gather, fall, and be wiped away. Swish, swash. Back and forth. The water collects and beads, then trails down, like tears. Again and again. The line of water trods on and is relentlessly swiped away and pushed aside.
My eyes stray to the crystal suncatcher charm hanging from the rearview mirror. It's a clear plastic crystal heart dangling from a rainbow of beaded crystals. It’s not exactly my style, but Dad bought it for me and it's become one of my most treasured possessions from him. He said the scattered light and rainbows were like my spark and spunk. But all the light and rainbows are shuttered today.
My thoughts creep in, unbidden. The words I would say if I could. Mom, I'm scared. Mom, I don't want to die. Oh, God, Mommy...
I hug myself tighter and force myself to stare at the windshield. Swish, swash. Back and forth. Again and again.
chapter 3
I LATHER ON THE HOMEOPATHIC arnica gel. Arnica is a plant that causes joint pain, so if diluted enough, according to the theory of “like heals like,” it can help with joint pain. Or in this case, prevent any knee pain from occurring when I go on my run.
I stretch a few times, letting my mind wander before my body does. It's a weird theory that something can be stronger when diluted. Or even that something can transfer its essence when there’s nothing left but the energy vibrations.
Would it be like that when I die? Nothing left but my energy vibrations? My energetic signature the last thing to disperse?
I shake my head free of its morbid thoughts and place my hand on my heart. It's an old habit of mine, ever since my acupuncturist told me my strongest energy was my heart. I take a deep breath and ground myself. I’m right here, right now. Better get running.
I push my legs hard like I pushed myself out of bed this morning. It’s been several days since my diagnosis, or D-Day, and I just couldn't take another day of sleeping in, watching shadows crawl across the wall, ignoring the buzzing of my phone.
I pull my phone from my armband and rapidly cycle through songs. I want something to match my mood. Ominous notes of an electric guitar herald one of my mom's favorites. It's been a long time since I last heard it, and it's just what I need. My feet slap the pavement as the trees around me blur by. I want to push myself until I can't breathe, until my body feels used up and renewed at the same time. Until this buzz of useless energy is expended, and all that's left is the feeling of wet hot skin, burning muscles, and a throat dry from siphoning in great lungfuls of air. Until I can't think anymore.
The lead singer of Better than Ezra weaves the words of desperation and desire between the rebellious, loud notes. There's a tension to the song “Desperately Wanting”, and as it crescendos, the tension builds, telling of lost chances when life has its way with you.
I turn onto a deer trail and run hard and fast. I let my body become fully engrossed in jumping over logs and brushing by branches, the path dipping and turning. It's exhilarating, like flying. I'm on the slope of a gentle ravine when the song ends and I come down from my high.
I climb onto a large rock and perch there, gasping for air, blessedly releasing into the feel of my body furiously functioning, all systems at max capacity.
The view is expansive, overlooking the gully with its small stream. Being out in nature, my body feeling so alive — in some ways, this moment feels perfect, and that makes it crueler. My gasps for breath are more rhythmic now, and I’m reflexively exhaling more than inhaling. I gasp air in and long pant it out. In again and a giant sigh on the exhale. The sound is a lot like the sound of crying, I notice, like when your soul has reached max capacity.
Stars disrupt my vision, probably the combination of lack of air and not enough water. I lay my head down on the rock, taking deep breaths with my eyes closed.
The smell of mothballs and antiseptic cleaner fills my nostrils. It's a unique combination I know from in-home hospice care. Older gray eyes stare at me, into me. I break away from her gaze. What would I see if I let myself look? Pleading, desperation? Or would it be empty, the mind relieved of its duties like the body has been? What would she say if she could talk? I can’t look. I’m too scared I’ll see the answer. I’ll see what I would say if I was in her shoes: “Kill me now.”
I’ve only met my grandmother a handful of times, but I guess it makes sense my poor oxygen-deprived brain is communing with her now. The stages of Huntington's are a slow progression from being less capable at your job to becoming totally dependent on others for basic life necessities. You lose your ability for language, thinking, memory, coordination, and movement. I open my eyes and take a giant swig of water, determined to run harder and faster on the way back. Maybe if I do, I can find my way back to an innocent home where I can leave the tarnished future behind me.
——— ———
SOUNDS OF MY MOM at the kitchen table greet me as I come in through the mudroom-cum-laundry room. My brain is clearer and my heart is a little lighter now. The laundry detergent perfume of clean clothes permeates the air, a faux freshness I'm willing to take on.
We haven't talked in all this time, and that was what I needed. Seeing her at the small table, curled over her coffee in her worn-out robe, her swirling spoon clinking like a poor man's singing bowl, I know she's been giving me space, for as long as I needed. I pull out the chair and sit catty-corner next to her, the vinyl sticking to the backs of my sweaty thighs.
She pulls the spoon out and rests it on the tablecloth, making a little puddle, unconcerned about the mess. I meet her eyes, perhaps for the first time since she drove me to my appointment.
