The Truth About Butterflies: A Memoir (20 page)

I relived
the moment over and over, and I knew the catheter was still in place when she began
to fall.  One of the doctors was the head of cardiology, and he asked, “Did she
say anything before it happened?”

I was embarrassed
to repeat what she’d said, so I told him that what she’d said didn’t mean
anything.

“You don’t
know that,” he said.  “What’s not relevant to you might be very relevant to
us.”

After a
pause, I told the doctor about the
gift
.

He threw his
head back in laughter and said, “I love this kid already.”

The doctor
decided that just in case the catheter
had
come out and caused an air
embolism, he wanted to send Nicole to the hospital downtown for treatment in
the hyperbaric chamber.  “It can’t hurt,” he said, “and it might help.” 

So on
October 13, Nicole was transferred downtown for the hyperbaric chamber.  I was
so afraid that she would wake up while she was in the chamber that I asked the
nurse, “If there’s an emergency, how quickly can you open this thing?”  Nicole
was claustrophobic, but I think it was my own claustrophobia that was bothering
me.  The nurse assured me that the propofol drip she was receiving would keep
her soundly asleep.

After the
treatment, which lasted several hours, Nicole was moved to the ICU.  It was
well after midnight on the 14
^th
, and I hadn’t slept or been home
since the 12
^th
.  The family room was empty, so I turned off the
light, used my sweater for a pillow, and curled up on the floor.

Shortly
after I’d drifted off, I was awakened by someone calling my name.  When I
opened my eyes, the lights were on, and all I could see were shoes.  I rolled
over onto my back and looked up to find myself surrounded by doctors.  It was
like I’d opened my eyes at my own funeral.  “Miss Stephan?”  I sat up.  “Your
daughter has suffered another cardiac arrest.” 

The chaplain
helped me to my feet.  I felt that if I stood up it might reverse what the
doctor had just said.  “She’s stable now,” he said, “but we can’t explain why
this is happening, and we now know it has nothing to do with the central
catheter coming out.”  They told me I could go in and sit with Nicole if I
wished, and I did.  As sleepy as I was, I couldn’t close my eyes.  I pulled up
a chair next to her bed and stared and the cardiac monitor, almost afraid to
blink.

The next
morning, the room filled with doctors, and one of them said, “We’re concerned about
her brain function.  She’s had two arrests, and we don’t know if she’s suffered
a brain injury or to what extent.  In a day or two, we’ll take her off the
propofol and begin weaning her off the ventilator.  You should be prepared for
anything.” 

On October
18, she came off the ventilator successfully, but she couldn’t talk, she had
difficulty swallowing, she couldn’t stand or grip anything in her hands.  She recognized
me but could understand only very basic commands.  I was devastated.  “She’s
very young,” the doctor said.  “Her brain is agile.  There’s no reason to
believe she won’t improve with therapy.”  So they moved her from ICU to a
regular room.

After a few
days of therapy, she could stand momentarily with the help of a walker.  She
still couldn’t walk.  She was swallowing well; her speech had improved, but by
all other accounts she was like a three-year-old.

One
afternoon as she was sitting in the bed waiting for dialysis, her movement
caught my eye.  I looked over, and saw she was feeding herself lunch.  She
placed a napkin across her chest, cut up her meat, and buttered her bread.  She
ate, drank from her cup until it was empty, and then reclined fully content.  I
watched, while over a span of 15 minutes, she’d fed herself an imaginary meal. 
There was nothing in front of her: no plate, no food, no silverware, no cup, and
no napkin. My heart sank.

After nearly
10 days of therapy, Nicole was walking without the walker.  However, her legs
were weak, and she’d often fall.  Her mental capacity had improved to such an
extent that she was able to speak and understand fairly well.  October 27, she
was released from the hospital.

Even though
Nicole was talking and could hold a conversation when she was released from the
hospital, it didn’t take long to realize that something was wrong.  When the
physical therapist came to the house for her initial visit, Nicole told her
that she was 23 years old.  “Nicole,” I said, “you’ll be 26 in December.”

“Ma, I think
I know how old I am.”

And the more
I tried to convince her, the more upset she got.  On another occasion, she told
me she’d taken a trip to Chicago just the week before.  When I told her she
hadn’t been to Chicago in years, she tore her room apart trying to find the ticket
stub.  And then there were the people who’d passed away that she thought were
still alive.  Because she seemed perfectly normal aside from these chunks of
missing memory, it was very disturbing when, during the course of a typical
conversation, I had to explain to her that the person she was talking about was
dead.

Having spent
time at the research hospital, which is where the transplant clinic is located,
I decided to switch to one of their kidney doctors.  Doing so would place all
of Nicole’s care under one roof, so to speak.  Generally, Nicole took public transportation
to dialysis, and then I’d arrive from work halfway through her treatment.  We’d
watch TV, she’d eat her snack, but mostly we’d talk.  When I switched doctors,
the new doctor told me Nicole would have to switch to a dialysis clinic she
worked at.  I had no idea that the rules would be so different.

On her first
day at the new clinic, I took the day off work and had planned to stay with her
during her treatment.  But when they called her back, the technician said to
me, “You can’t come back here.”  I assumed she’d meant I couldn’t go back until
the needles were in, but she told me I couldn’t come in at all.

“Ever?”  I
asked.

“No,” she
said growing irritated by my insistence.

It was two
o’clock, so I said to Nicole, “Around four, I’ll bring you something to eat.”

“She can’t
have anything to eat during her treatment,” the tech said.

“I was only
going to bring her a snack.”

“Ma’am, she
can’t eat on the machine, period.”

Nicole, who
had been standing quietly, waved me away.  “Just go, Ma.  I’ll see you at seven,”
and she disappeared into the treatment area with the tech.

Before we
moved to the clinic, I’d met with the administrator, but by the time Nicole
started, he was no longer working there, so I didn’t know a single employee at
this clinic.  That, along with being excluded from her treatment, made me very
uncomfortable.  Because I could visit with her at her previous center, except
when the needles were going in or coming out, and because she could have a
snack at some point during her four hours on the machine, I knew at this new
clinic, where all of these things were forbidden, that we were on thin ice from
the start.

Shortly
after starting at the new clinic, Nicole started asking to come off the machine
before her treatments were over.  “If
they
can take me off before my
treatment is done, why can’t I?”  She asked.   

“When did
they take you off early?”

“Just the
other day, they gave me a paper to sign saying I was coming off the machine
against the doctor’s advice, and then they disconnected me.”

I blamed
this ridiculous story on Nicole’s damaged memory, but the next time we were at
the clinic, I asked if this had happened.  I was told that if patients arrive
late, it’s the same as saying they don’t want their full treatment, so they’re
taken down before the treatment is complete.  This was absurd to me, but more
importantly, Nicole hadn’t been late.  On one occasion that she’d been taken
down early, we had been upstairs in a meeting with the doctor.  “But other than
that,” I told the nurse, “Nicole has never been late. We live 30 miles away,
and I always get her here by two o’clock.”

“Her appointment
is at two, which means she needs to be here by 1:30,” the nurse said.  If she’s
not on the machine by two, she’s late.”

It was the
first I’d heard that she needed to be there at 1:30.

On one
occasion, Nicole got off the machine to use the bathroom, and then decided to
order a pizza.  When the pizza came, she sat in the lobby and ate it.  This
might not sound like a big deal, but it’s very much like asking a pilot to land
a 747, so you can grab a sandwich.  She was reprimanded.

Some months
later, she placed another pizza order.  This time she wasn’t on the machine. 
I’d started getting her to the clinic much earlier to make certain she wasn’t
late, so she’d ordered the pizza while she was waiting.  It really didn’t
matter whether she was eating during her treatment or before her treatment. 
What mattered was that she was eating after they’d told her not to.  So the
doctor told me to come and get her, I should take her to the hospital to
dialyze, and that she should find somewhere else to go.

The very
week that this happened, Nicole and I had been sitting in a coffee shop when an
old acquaintance walked in.  She came over and said hello to both of us, and
then began catching me up on the goings on in her life.  Almost as an after
thought she asked, “How’s Nicole?”  Immediately, Nicole’s eyes swelled with
tears.  At the horror of her mistake, our friend apologized profusely.  But
there was no way to unsay what was painfully obvious: Nicole had become
unrecognizable. 

Whatever
flicker of light Nicole possessed, it was extinguished that day in the coffee
shop.  And as she sat with the sunlight streaming in, and I took a good, long
look at how her skin had darkened, how all of her hair had come out, and how her
clavicles were showing through her emaciated flesh, I wondered how we were ever
going to get back to how we were before. 

So when the
doctor told me to come and pick up Nicole, and I pulled in and saw Nicole slouching
in the doorway, I knew that we were never going to get back to where we were before,
and regardless of what I told myself every single day, there was no cavalry
coming to save us.

December 5,
we signed Christmas cards.  It’s the last thing we did together the night
before it happened.  Weeks prior, Nicole had been in and out of the hospital
with high potassium levels and cardiac complications.  But she was home, and
our Christmas cards, which were usually in the mail the day after Thanksgiving,
could finally be sent.

I signed
first and then passed them on to her.  I noticed that she was signing so closely
to my name that our signatures partially overlapped.  “Don’t sign so close to
my name,” I said.  But if I’d known that Death had sneaked into the house, was
hiding under the bed, and would spring out and make its move the very next
morning, I would’ve kept my mouth shut. 

I fixed
dinner, but again she’d refused to eat.  What started over a year before as
severe stomach pain after a few bites of food had evolved into a complete loss
of appetite.  After we signed the cards, Nicole took a shower and asked, “Do
you mind if I sleep with you tonight?”
Her wanting to
sleep with me wasn’t unusual. She said that since she’d been sick, everything
was worst at night; pain, nausea, fear, loneliness, all of it intensified at
night when, as she said, “the world goes to sleep and leaves me to face this by
myself.” 
  

She was up
and down most of the night, and every time she climbed out of bed, she climbed
over me.  Frustrated, I asked, “Can’t you get out on your side and walk
around?” 

“No,” she
said.  “It takes too long.”  So every time she got up, I was awakened by a knee
in the groin or a hand in my throat.  I watched as her tall, slender silhouette
disappeared into the darkness of the hallway. 

I woke up at
about 4 a.m. with my head flat on the bed.  Nicole had taken all the pillows
and created for herself a nest.  Pillows cradled her head, arms, and the left
side of her back.  I was thankful that she was finally sleeping soundly.  At
5:30, Nicole’s moaning woke me.  “What is it,” I asked. 

“My muscles are
aching.” 

I turned
over and rubbed her back and shoulders until she drifted off again.  At 6:30,
as I got up and dressed for work, Nicole sprang up suddenly and said, “I can’t
breathe.”  I ran for the concentrator to make sure the tubing hadn’t become
kinked or disconnected.  Once she was sitting up for a moment, though, her
breathing recovered.  It was her dialysis day, and I asked her if she felt well
enough to go by Para transit, which picked her up right in front of the house, or
if she felt that I should take her.  “I can make it myself.”

As I
prepared to leave, I told Nicole that I’d call her at nine to make sure she was
up and ready for the bus.  As I left the house, a substantial heaviness settled
over me.  It seemed that even my tongue became heavy.  I pulled into the
driveway and went back in the house. 

Nicole was
still sitting on the side of the bed grimacing in pain.  I sat next to her on
the bed and tried to think of why she could be feeling so terrible.  I decided
that since she had given up eating but was still taking the medication that
lowered her potassium, her potassium level might’ve been too low. “Get
dressed,” I said.  “We’re going to breakfast.”