The Truth About Butterflies
A Memoir
By Nancy Stephan
Copyright © 2011 by Nancy Stephan
All Rights Reserved. No portion of this book may be reproduced in any form, except for brief quotations in reviews, without the written permission of the publisher.
Rum & Baker Publishing
P.O Box 49
Dallas, GA 30132
www.rumandbaker.com
Printed in the United States of America
First Edition (Amended)
ISBN: 978-0-615-43545-9
Library of Congress Control Number: 2011901809
For Nicole
The muddy water is gone
The beautiful blue water is here
Just like I promised
Table of Contents
Preface
Part I
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Part 2
Chapter 8
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
Chapter 15
Chapter 16
Chapter 17
Chapter 18
Chapter 19
Chapter 20
Chapter 21
Part 3
Chapter 22
Chapter 23
Chapter 24
Preface
The first time I saw a dead person, I was eight years old. My cousin Kenny and I had gone with Aunt Betty to a funeral parlor. While she talked with the salesman, we played among the casket displays. Aunt Betty would order us to settle down and stop touching things, but when she’d turn around, Kenny, who was 10, would make funny faces and touch something anyway. Of course, I had no idea what these things were used for until the next day when I saw my mother lying in one.
Aunt Betty had explained to me a couple of nights before in the hospital that my mother had gone to heaven, so at the funeral I stood, I imagine like any child would, trying to figure out why she wasn’t moving. I couldn’t associate her being in heaven with her being dead even though I knew what death was, that is to the extent young children are capable of knowing these things.
The night my mother died, we were in bed together. I seldom slept in my own room because my closet had French doors, and I was convinced that someone or something was watching me through the louvers. Even if I started off in my own bed, I always ended up in hers.
As my mother lay sleeping, I was startled by a heavy gasping sound she suddenly made. As quickly as she’d made the horrible sound she was once again quiet. I’m not sure how many minutes I lay there before trying to wake her. I’m not even sure how I knew something was wrong, but when I couldn’t wake her, I turned on the lamp beside the bed. Her eyes were closed like she was sleeping, but her face was blue and mottled. I immediately called Aunt Betty, and my cousin Bobby answered the phone. I told him that my mother was cold and had blue lines on her face like spider webs and that she wouldn’t wake up. He said that I was dreaming and should go back to bed. But when I insisted that something was wrong, he said he’d call Aunt Betty at work.
Aunt Betty arrived very quickly, it seemed, and so did the ambulance. My mother was a nurse, and they took her to the hospital where she worked. We weren’t there long before Aunt Betty, who had been talking to the doctors, started crying. The nurses, some of whom worked with my mother, were also crying and hugging each other. A doctor came and knelt in front of me and told me I was a very brave and smart girl. As things began to settle down, Aunt Betty said, “Everything’s okay, honey; your mama’s in heaven now.” In that instant, I must’ve decided that going to heaven and being dead was not the same thing.
From the hospital, Aunt Betty and I went back to her house. She told me to go climb into bed with one of the boys, of which she had three: Kenny was 10, Bobby was 12, and Stevey was 14. “Honey, go straight to sleep, and don’t wake the boys.” And I probably wouldn’t have, but when I walked into the room, Stevey was already awake and asked, “What are you doing here?”
“My mom’s in heaven.”
He was over on the top bunk, and he sat straight up and swung his legs over the side. Even though it was dark, I could see him clearly.
“No she’s not!” He scolded.
“Yes she is.”
“Shut up, and stop lying!”
“But she is.”
He was quiet for a moment, and then he called out loudly, “Mom?” Before Aunt Betty could come in, Stevey jumped down and went out of the room. I heard him ask, “Mom, where’s Aunt Sue?” By then, Kenny and Bobby were up, and all the lights were on, and no one slept after learning that my mother had gone to heaven.
At the wake, the confusion began to set in. I wondered how my mother could be in heaven and at the same time lying in a box at the front of the room. Aunt Betty said she was there so people could tell her goodbye, but no one did. There were no conversations at all between my mother and anyone in the room. People just milled about in small groups and talked in hushed tones.
I asked Aunt Betty if I could write my mother a note. She gave me a piece of paper and a pen and sent me off to compose, probably thinking it would keep me busy for a while. However, it only took a moment for me to scribble out my message. Afterwards, and unaware that handling my mother’s body was inappropriate, I headed to the casket to give her the note. When I grabbed her wrist and lifted it, a collective gasp filled the room. Aunt Betty rushed over, and together we placed the note under my mother’s hand. She whispered one admonition as we walked away from the casket, “Honey, don’t touch Mama.” There was little chance of another gaffe as I remained at my aunt’s side throughout the evening.
When it was over and she said it was time to go, I started to cry. The preacher told Aunt Betty to let me cry because I needed to grieve, but my tears had nothing to do with grief. I was crying because we were leaving, and my mother still hadn’t acknowledged my note.
I was well into my twenties before I actually began grieving my mother’s death. Up until then, refusing to believe that she was dead, I’d convinced myself that she was living in another country and when the time was right, she would come back for me. At eight when she died, I was oblivious to the one dark onus that colored our world. But within a few short years of her death, I had come to understand these things and believed that if my mother would just come back, I would be strong enough for the both of us.
As a teenager, I began asking Aunt Betty a lot of questions about my mother’s death. When she gave me the death certificate, I believed that it might’ve been fabricated, that maybe she herself had paid someone to create the phony document just for my benefit.
With the advent of the Internet, I discovered the online social security death index. I found my mother’s name, and then once or twice a year I would revisit the site to see if her name was still there. But age and wisdom prevailed, and I eventually made peace with perhaps what I had known all along: my mother was dead, and she wasn’t coming back.
Over the years, I’ve experienced the deaths of friends and loved ones. Like many, I’ve been shocked by phone calls in the middle of the night. In some cases I’ve been relieved to see death come to those whose lives had been choked out by disease and suffering. But no amount of experience would prepare me for the death of my own daughter, which left me teetering between life and dissolution.
Some have said I should’ve seen it coming. Others have said I should be relieved that it’s over, but I’ve learned t
hat over doesn’t always mean the end, and what we might consider ending is simply continuing anew. This is my daughter Nicole’s story; it’s our story. Living it has left me breathless. Sharing it has given me wings.
Part I
January 2008
There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, people we can't live without but have to let go.
~Author Unknown
Chapter 1
My joints were aching and refused to be consoled. An elderly lady in the drugstore told me I was aching because of the chill in the air. “It’s what comes on us with age,” she said. As I toggled between analgesics, trying to decide which would be best, the lady said, “Baby, get you some Epsom salts and saw bean.” I’d been subjected to many folk remedies, including goose grease and asafetida, but never saw beans. I had no idea what they were or even where I might find them; it really didn’t matter as I had no intentions of buying any. Out of respect, though, I nodded and listened attentively as she explained the cure for my aching joints.
Turn up the thermostat. Run you a tub of hot water. Pour about two cups of Epsom salts over in there. You soak in that ‘til the water grow tepid; them salts will draw all that pain off you. Towel off real good, and rub some saw bean on them aching joints. Slip on some flannel PJs and a housecoat and wrap up good and tight. Then go straight to bed. She leaned in closely and whispered, I mean straight to bed, no relations.
I chuckled, trying to remember the last time I’d heard sex referred to as relations. I didn’t bother explaining that “relations” was the last thing on my mind, that my body, grieving and starved for sleep, was turning on itself, and that my only child was dying. Instead, I smiled in appreciation of her kindness. A few more bits of advice and she disappeared down the aisle. I put the Naprosyn back on the shelf and dropped the Motrin into the basket. After I picked up a few more items and headed to the register, the lady reappeared. “Here you go, honey.” She dropped two items into my basket: a carton of Epsom salts and a bottle of saw bean, which to my surprise turned out to be Absorbine, Jr.
Arriving home, I took a couple Motrin and a hot shower, but my joints were simply inconsolable. Four hours later, unable to sleep, I went into Nicole’s room and rummaged through her vast collection of medications and found a bottle of Percocet. Within 30 minutes, I was feeling the euphoric effect of the drug, and I curled up in bed with the hopes of a painless, restful sleep. I would need to be strong the next day, clear headed and able to conduct myself graciously. Therefore, a good-night’s rest was essential.
Two hours later, however, I awoke to the sensation of my stomach being fed through a meat grinder. The pain coupled with nausea was nearly unbearable. On my knees in bed doubled over a pillow, I moaned and prayed, but there would be no relief. By morning, the aching in my joints had somewhat subsided, but the nausea from the Percocet was unrelenting. I had hoped to face this important day well rested. Instead, I dressed and headed to the hospital a sleepy, nauseous mess.
As I took the familiar path from the parking deck to the main lobby, past the gift shop and up to the 5th floor, I was keenly aware that it would be the last time I walked these halls. Either God would heal Nicole, and she would be done with all of this foolishness, or He would take her home, and she’d be done with all of this foolishness. Either way, I would never again walk these halls with the gnawing anguish of not knowing whether or not she’d be okay.
From the time she was nine years old and first diagnosed with diabetes, I had been pacing hospital corridors filled with ambivalence, tears, prayers, and hope. Now, that sixteen-year ritual was nearing an end, and the pressure of its culmination filled my chest like a centrifugal force.
The nurse caring for Nicole that morning had taken special care in getting her ready. Her hair was neat, her lips moist, and her gown and covers tight and crisp. It was 9:30, and the paramedics would come to transfer her to hospice at ten o’clock. I gathered her personal effects and began taking down the notes and get-well cards. I looked around the room; for over a month it had been our home. I stroked Nicole’s hair and told her that we were leaving, going to a place much more peaceful.
When the paramedic arrived to transport Nicole, he introduced himself as Hank and told me exactly what would happen during the transfer. He asked all the important medical questions, filled out forms, and took report from the nurses. Afterwards, he said, “I know all of this is excruciating for you, but rest assured that while she’s with me, she’s in very good and capable hands.” As heartsick as I was, I immediately took a moment to thank God for sending this man to transport my daughter. It could’ve been anyone, but it wasn’t. I believe he had been hand-selected by God to carry out this very task on this very day, and I was overcome with gratitude.
The paramedics moved Nicole from the bed to the stretcher being careful of the IVs, ventilator, and oxygen tubing. Once Nicole and all of the equipment were secure, we made our way out of the room and into the hallway of the Coronary Care Unit, which was right in front of the nurse’s station. I tried not to make eye contact with the nurses, but I could still sense their uneasiness.
Having made it to the doors of the unit, I heard someone rushing up behind me. When I turned, one of the nurses threw her arms around my neck and began sobbing; we sobbed together. Over her shoulder, I could see the other nurses pacing, rubbing their foreheads, holding their mouths. The nurse quickly pulled herself together and cupped my face in her hands; “Call us anytime, night or day… Now don’t you get over there and feel like you’re alone… If you need to come back and sit with us, or if you need someone to talk to, you call us or come right to those doors and ring us.”
I felt like a youngster going off to summer camp, receiving a never-ending list of instructions from a worried mother. However, where I was going was no summer camp. Instead it was a deep place, and as much as I dreaded going, I knew that everything I had ever learned in life, everything I believed, trusted and experienced would be tested in the place that lay ahead.
There are no names for these deep places that try our souls. Some are cavernous and filled with noxious fumes. Some are in undersea canyons where the pressure is insurmountable. Some are in outer space void of oxygen and gravity, and some are on ice-covered mountains, deep just the same. These are inhospitable places where no flesh can survive. Yet, it isn’t the flesh but the spirit that finds itself in these places—blinded by darkness, gasping for air, crushed by pressure, adrift with no hopes of an anchor. In spite of all of this, we survive but not only for ourselves. Even if on hands and knees, we must return from these deep places clutching in our bloody fists something of value for humanity.
The medics waited patiently while the nurse and I said our goodbyes. “We love you and Nicole, and you’re gonna get through this.” I wanted to say thank you, but the words stuck in my throat like a lump of dry bread. We reluctantly pulled away, and the medics, Nicole, and I made our way to the elevator.
The service elevator was incredibly busy that morning, and every time the doors opened it was filled with personnel and supplies, so we waited. Finally after the third round, Hank said that if the next elevator was full, he would ask everyone to get off so that we could get on. With the stretcher, the equipment, and the three of us, there would be no room in the elevator for anyone else. As we waited, I heard a voice echoing through the hallway. I looked up to see Reba walking in our direction talking on her cell phone.
It had been a month since I’d seen her, and I wondered if she’d thought at all about the awful words she said to me in the emergency room. I wondered what she would say to me now that, as far as she was concerned, Nicole was going away to die. Perhaps she would touch Nicole’s hand as a gesture of good will. But as she approached, she looked at me and then down at Nicole, and walked by without as much as a nod.
In that moment, the anger that I carried across my shoulders like a sack of wet cement hardened and became a part of my a
natomy. Hank commandeered the next elevator, and when we made it to the parking lot, I looked back at the hospital and prayed I would never again have to darken its doorway.
Chapter 2
The Percocet was still nauseating me when we boarded the ambulance for the trip. Hank gave me the option of riding up front with the driver or in back with Nicole and him. I chose the back but was regretting it. Because of the position of the seat, I was riding backwards, which added to the nausea. I longed to reach our destination so I could get out of the large, swaying ambulance. As soon as Hank opened the door and helped me out, I went into the atrium and sat on the sofa.
The rich, jewel-toned interior and warm lighting was soothing, but it did nothing to ease my nausea. I watched as they wheeled Nicole into the end room. I followed only with my eyes because I was too sick to move. I sat motionless and concentrated on taking deep breaths. Like a damp, wool blanket, an uncomfortable and heavy sleep overtook me, but shortly I was awakened by a touch on the shoulder; my friend Eunice had arrived.
As she stood over me with the light behind her, I could barely make out her face, but I had no difficulty knowing that it was her. She asked me how I was. I can’t remember if I told her the truth, that I might as well have been dead, that I was outside of my body watching all of this happen to someone who looked like me but really wasn’t me, or if I lied and said I was fine. Regardless of what I told her, she knew the truth.
Being on staff with this particular hospice, Eunice called for the director of the facility and the managing nurse, both of whom were her colleagues. She said that it was important that I meet them. “If you have a problem with anything, you let either of them know,” Eunice said. She and I have been friends for 15 years. She had been the Director of Nursing at an organization I once worked for, and we laugh now because our friendship got off on the wrong foot.
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