Living While Dying

By Kirby Elaine

Chase Curtis leads a simple life in New Orleans with his high school sweetheart Joy. Everything is perfect until a seemingly nothing incident sends Chase to the doctors in search of answers. And the answer isn't the nothing that he hoped for. Diagnosed with ALS (Amyotrophic Lateral Sclerosis), Chase is given little time before the disease claims his body and eventually his life. But he is determined to fight. Not just for himself but for his family who has vowed to be there every step of the way.

1,437 Days is a story of love, faith, trials and triumphs that will have you hugging your loved ones.

• Language: English
• Publisher: Kirby Elaine
• Release date: Nov 10, 2014
• ISBN: 9781311681744

Kirby Elaine

Born and raised in Baltimore, MD I began writing at age nine. I began work on my debut novel, Healing Wounds, in 2011 and finally put the finishing touches on it in 2013.Stories come to me and I have to write them down. It's the only art form I know.

Book preview

Living While Dying

Kirby Elaine

Living While Dying © 2014 Kirby Elaine

Lucky Eleven Publishing

All Rights Reserved

Cover photo by I.D.I.A

Cover model Chaston Riley Hurst

Cover Design I.D.I.A

No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

This book is a work of fiction. Names, products, characters, businesses, organizations, places, events and incidents either are the product of the author’s imagination or are used fictitiously.  Any resemblance to actual persons, living or dead, events, or locales is entirely coincidental.

Long Ride Home © Michael Franti and Spearhead

Dedicated to every man and woman fighting the vicious disease known as Amyotrophic Lateral Sclerosis…

For more on ALS, please visit the ALS Foundation at www.alsa.org

Disease takes from us the most important parts of ourselves. It takes away our ability to hope, our drive to succeed, and our will to do anything. But it never touches the most important thing; love. That’s what got me through, nothing else because I long ago lost hope for a magical cure. I long ago gave up any aspirations I had and the only will that remained was to love Joy, to love her because she gave me everything when ALS was trying to prove that I had nothing.

Chapter One

The smell of blueberry waffles wafted through our small apartment. Joy was up early making breakfast. In an hour she’d be going with me to see the doctor. I needed know what was going on. We got back from my brother Nathan’s wedding two weeks ago. Today is Ash Wednesday and I have been leaning on prayer more in the last few weeks than I have most of my life. I was already considering the worst.

Eight weeks ago I couldn’t button the small black buttons on my white tuxedo shirt. And when we had gotten home I sat with the shirt on my lap manipulating the buttons until, twenty minutes later, I was able to coax my hand to achieve victory over the last tiny black button. And then I laid there on our bed in fear. Something was going on and I couldn’t explain it.

Joy thought it was okay to play Google doctor and had diagnosed me with everything from carpal tunnel to dystonia. I brushed of her diagnosis and decided to hold out for a real medical opinion. In the back of my mind I knew it was a brain tumor. I knew that a change so sudden had meant a tumor was pressing on the wrong nerves and rendering my hands useless.

But after the twenty minute button episode, I thought I had been fine. No more issues buttoning, zippering, tying or anything else. But Joy had insisted I keep my appointment I set the days after we arrived back home. There was a bit of uncertainty in not knowing what caused the fluke but not enough to concern me at first. But Joy, she was to be my wife sometime in the months ahead, so I kept the appointment. It was a chilly March day so I threw on a second shirt before making my way to the kitchen.

Morning. I kiss Joy who’s loading our plates with waffles, grits, and bacon.

Joy Garrett is the most beautiful woman I’ve ever met. She’s petite; her caramel skin is a welcoming contrast to her dark hair which she’s worn in locks since before I met her at age sixteen. But it was her smile that did me in; her big perfect smile. And she’s the most loving and giving person I ever met; always so upbeat and positive. Plus she was a charmer. Her name couldn’t fit her more.

Did you want coffee or OJ? She pulled two mugs from the cabinet filling the first with her black coffee, the first of at least four cups she’d have today.

Coffee. I grabbed the sugar and creamer and took a seat at our small dinette, the only piece of furniture in our partial dining room, a piece I grabbed from my parents storage when we moved into our own place nearly six months ago. It’s nothing special, serves its purpose.

Stop worrying, Chase, it could be nothing. She sat cutting up her waffles. I looked at the food on my plate. She has had more qualms about my hands than I have; my waffles were cut into bite size pieces. The syrup already poured over them. The small pieces don’t change the fact that it’ll be hard going down. I follow each bite with a sip of coffee.

We finish breakfast in near silence, placing our mugs and plates in the dishwasher and grabbing our things to head out. I think mostly we’re tense about the appointment. I’m a little nervous. It could be anything. But Joy’s right too, it could be nothing. I pray for the latter as I close Joy’s car door and proceed to the driver’s side and climb into my blue four-door truck. It happens again. My hands, I can’t bring them to separate one key from another. I feel the heat of Joy’s eyes on the side of my face. She’s thinking the same thing I am. Something is seriously wrong.

***

The waiting room is drab and cold enough to entice Joy to pull her sweater tighter around her chest. The smell of bleach and antiseptic lingers in the air. Other than the two of us, an older man waits across the room; his hair is grey, and he looks tired as he attempts to hold his interest in an old magazine. I smile. He reminds me of my father; the roundness of his stomach and the heavy frown lines on his face.

Mr. Curtis The receptionist calls awakening me from my mindless thoughts. The doctor will see you now.

I feel Joy’s hand reaching for mine. I clasp it tightly as we enter the door of the examination room. I change into the gown on the bed as instructed by the nurse. I sit on the exam table watching Joy bite her nails.

Joy. She glances at me her sweet tea brown eyes holding my gaze. Everything will be fine. Maybe it’s just stress. With Dad wanting to close up the business, it hasn’t been the easiest of times.

My dad runs a two man shrimp and seafood boat. I on the other hand have been working to acquire two more boats and hire six more guys. He and I have worked the boat together since I was sixteen. After my brother had headed north to make a life for himself, I honestly had no choice but to work with my father. Not that I would know what to do if I weren’t a fisherman. Maybe, I would have ended up in a civil service job. Being a firefighter always appealed to me.

You’re right. She stood replacing her body with her large purse. My heart pulled as she walked toward me. If anything were wrong how would she fare. Her arms came around my neck comforting my thoughts. I love you. Whatever is going on, it’ll be okay and I’ll be here regardless.

I pulled her hand to my lips turning the diamond engagement ring around her thin fingers. In a little more than a year she’d be my wife. I kiss her cold knuckles rubbing her hand against the side of my face. The doctor entered the room.

Hi Mr. Curtis, I’m Dr. McCarthy. He shakes my hand and then turns to Joy.

This is my fiancé, Joy. I say gesturing to Joy who has taken up her seat again. He speaks a brief hello before turning back to me.

So tell me why we’re here today. He pulled up a stool and opened the manila folder, clicking his pen.

So, about seven or eight weeks ago, I began. at my brother’s wedding I had difficulty buttoning my tuxedo shirt.

Was there numbing or cramping in your hands? He asked in honest concern.

More like a tingling. I’d compare it to lying on your arm for a long period of time, like my fingers fell asleep. I unconsciously massaged my hands together.

Both hands? He asked.

More so the right, I’m right-handed. But the left too, just not as much. I stretched my finger out.

And was that the only episode? He scribbled notes in the folder, my eyes barely meeting mine.

This morning, I went to start the car I couldn’t separate the keys from one another.

Okay. I’m going to give you a full physical exam and then we will run a few tests.

He proceeded to check my ears, nose, eyes, and throat, took my blood pressure and held my stethoscope to my chest and back having me take several breaths. After poking and prodding my body for a lengthy fifteen minutes he draws blood and asks for a urine sample. I comply feeling more and more like a lap rat by the second.

We’re going to run test to rule out a number of diseases. I’m scheduling you for a CT and referring you to a neurologist. I don’t want to alarm you. But the symptoms you display can be related to any number conditions. Some are treatable, other’s are life threatening…

After the words life threatening my listening trailed off. I couldn’t hear or see anything around me, life threatening. I’m twenty-six; I’ll be twenty-seven in a few dayss. What life threatening disease could I possibly have at twenty-six? My mind immediately goes to cancer. I feel her hand in mind. She knows as I do that from this day forward things will never be the same. I don’t even know what’s wrong yet everything has just changed.

…Mr. Curtis? Mr. Curtis? The doctor calls. I come to.

Yeah? I reply numbly.

You’re set up to see the neurologist the same time next week. I have to advise you from driving and operating heavy machinery for the next week, until we know more. Don’t give up just yet Mr. Curtis, we don’t know anything yet, it could be nothing. He left the room. Only someone on the outside looking in could utter those words. Joy had said it and now the doctor is saying it.

It could be nothing. I murmur stepping back into my jeans and pulling my white t-shirt over my head. Fearfully I buckle my belt and barely accomplish tying my shoes. I don’t bother with the buttons on my denim shirt, I don’t want to disappoint myself.

***

It’s test day and Joy is missing a second day of classes to accompany me to an appointment. To think that awkward hand spasms that haven’t happened since the incident with the keys, has me riding shotgun toward the hospital for the second time in eight days. And as we drive my nerves build; causing me to lose all thought except that of a diagnosis. But I entwine my hands and silently pray for the best outcome despite the fact that my mind wants me to believe that I am sick. I’m not sick, I’m stressed, I need a break, a vacation.

You okay? Joy rubs my thigh. And I can’t help but to smile at her.

I’m fine. I lie, clutching my hands together once more.

We arrive at the hospital and make our way to neurology where I’m schedule for a CT and MRI. Dr. McCarthy greets us at admissions. We go into an exam room to go over my blood and urine analysis. It’s good news, I think. No findings.

"We use the blood and