The Truth About Butterflies: A Memoir (2 page)

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 anatomy.  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. 

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. 

We met on
the telephone during a huge misunderstanding, and as such, I had decided, sight
unseen, that I simply didn’t like her.  A week later at work, I met a woman in
the hallway.  We struck up a conversation, and it was one of those occasions
where you feel like you’ve known someone your entire life.  As she continued
talking, I realized she was the one from the phone call the previous week.  My
expression must’ve changed because at that moment she raised her eyebrow and
said, “Didn’t know it was me, did you?”  We laughed, and our paths have been
hopelessly linked ever since.  Aside from our not having the same parents, we
are sisters in every sense of the word.

The nurse
finished with Nicole and told me that I could go in and see her, but before I
could go, the social worker came and asked to have a word with me.  We went to
a more secluded area where she asked me about my wishes and if I’d signed a
Do
Not Resuscitate
(DNR) order.  I told her that I hadn’t.  “Do you want to?”
She asked.  I tried to answer but couldn’t.  “You don’t have to answer right
now,” she said.  Then she asked, “What is it you want for your daughter?”

“I want her
to be healed.”

“You’re a
Christian?”

“Yes, and I
believe in healing.”

“I’m a
Christian as well and also believe in healing.  I’ll keep you and Nicole in my
prayers, but have you made plans for the alternative in the event she’s not
healed?”

“No.”

“Have you
contacted a funeral home?”

“No.”

“Do you have
one in mind?”

“No.”

“Tomorrow,
I’ll bring a list of funeral directors in the area.  You want to take care of
this now so you won’t have to deal with it when the time comes.” 

I opened my
mouth to say that Nicole’s time would come when she was old, and her children
would make the arrangements for her just as she’ll make them for me because
that’s the way it’s supposed to be.  Though these words were in my head, they
never found their way to my mouth.

By four
o’clock that afternoon, the horrors of the previous night had caught up with
me. I was sleepy and exhausted and things were more surreal than ever.  Nicole
was settled in and connected to a small table-top ventilator.  Her room was
beautiful.  The plantation shutters cast lovely shadows across the floor. 
White chair molding separated the moss- and butter-colored walls.  The oak
chest of drawers matched the floor, and the sunlight beaming through the two
windows brought life to the quilt that hung from the wall.  Absent was the
frenzied, fast pace of the hospital—patients coding, nurses rushing, families
praying, machines blaring, walls, windows, and floors looking on in solemn
silence, and the smells of life and death and everything in between making
their hourly rounds.  It was nothing like that here, and I felt it was calm
enough for me to go home for a while and get some sleep. 

As I
fantasized about how wonderful it would be sinking into my cool pillows and
sheets, the nurse came in.  “The medical director will be here around six, and
she wants to speak with you,” she said.  Six o’clock was less than two hours
away, and the hospice center was 45 minutes from my home.  There was no way I
could make it home, rest, and be back by six.  I wondered what was so pressing
that she had to meet with me so soon after our arrival.  I was completely
depleted, and for once I just wanted to be left alone.  I wanted nothing more
than to lock the door, climb into bed next to Nicole, and cradle her in my arms
like I did when she was little.  That alone would’ve been a little piece of
heaven.

The closer
it came to six o’clock, the more anxious I grew at meeting the medical
director.  I wondered if somehow she had been contacted by the doctors from the
hospital, if they told her not to put up with any of my crap about giving
Nicole time to wake up, that I should be made to sign whatever papers needed to
be signed to get this thing over and done with.  The last thing I wanted was
another doctor telling me that Nicole was in a hopeless situation and that I
needed to let her go, how keeping her alive was selfish on my part and
frustrating for everyone involved.  If that’s what she was coming to tell me,
then I would play a nasty trick on her. 

She would
barge into the room in her white coat expecting to stand over me, her lips
dripping with some greasy, under-cooked speech, but I would be long gone. 
Irritated by my disappearance, she would search for me, checking the bathroom
and the closets, but I would be at home picturing her desperation from the
comfort of my bed.  Distraught, she’d be forced to save her lecture for another
day. 

When the
nurse came in to check on Nicole and me, I asked her about the doctor.  “What
kind of person is she?”  The nurse looked confused. “What do you mean?”  She
asked.

“Is she
nice?”

“Oh, she’s
very nice.  Let’s see… she’s probably in her 40s; she’s from Africa, very
friendly, easy to talk to.  I’m sure you’ll like her.” 

I thought to
myself,
I’m sure I won’t.
  I thought about leaving.  What’s the worst
that could happen?  At best she’d have to wait until the next day to see me,
which would’ve suited me just fine.  Besides, by then I would’ve been well
rested and better able to deal with her.  While deciding whether to leave or
stay, I once again fell victim to sleep. 

I was
startled awake by the door opening and realized that the doctor had arrived. 
She came in, pulled up a chair directly in front of me, and sat down with her
knees touching mine.  She was casually dressed with no lab coat.  “I’m Dr.
Anedi Eme-Akwari.”  She looked over at Nicole.  “She’s a very pretty girl;
you’re both very pretty.”  I thanked her… and I waited.  “I asked to meet with
you tonight to answer any questions you might have and to find out what you
expect from me.”  Still a bit shaky from being awakened so suddenly, I couldn’t
think of one single question, and I had no idea what I expected from her.  “Let
me ask you this,” she said.  “What do you want for Nicole?”  I wondered what
kind of answer she was fishing for. 

It has been
my experience that some physicians do not believe that faith and reality can
coexist.  Once a doctor says, “The reality is, your child is going to die,” and
the parent says, “I believe God can do anything,” immediately it’s seen as
nothing more than denial, an attempt to avoid reality.  Speaking of God and
faith during times of medical crisis is the acceptable, even admirable thing to
do, but taking a stand on faith when medicine has declared a poor prognosis is seen
simply as avoidance or a tool of procrastination.