The Truth About Butterflies: A Memoir (16 page)

Aside from
her moxie, Nicole’s grades were always very good.  Her standardized test scores
were above the national average, and her language skills, especially, were
exceptional, which was somewhat of a two-edged sword.  Her teacher had said, “Nicole
finishes her work, and then she engages the other students.  When she’s
reprimanded she’s determined to have the last word.  I will not be forced into
a debate with an eight-year-old in my own classroom!” 

During
parent-teacher conference weeks later, her teacher said that Nicole was no
longer talking back and that when she told Nicole how impressed she was with
her good behavior, Nicole said, “My mommy told me if I talked back to my
teachers again, she was gonna take me to Funky Town.”  I chuckled nervously, but
the teacher assured me, “Hey, whatever works.”  Back talk aside,
if action was
the order of the day, Nicole was always the first in line, and it seemed the
riskier the action, the more she was drawn to it. 

I
heard somewhere that people who are risk takers often have children who are
risk takers.  I, however, am not a risk taker.  As a matter of fact,
I can calculate the consequences of an action down to the third or fourth
generation and explain why those actions should be avoided at all costs. 
Nicole, on the other hand, had little concern for such petty details. 

I’ve
also heard that traits often skip a generation.  If this is true, it
explains everything.  I was no stranger to the uneasiness that often
accompanied Nicole’s actions because as a little girl, I’d felt the same
uneasiness with my own mother.

On
one occasion, when I was six or so, my mom and I had pulled up in front of Aunt
Katie’s house and noticed the guys huddled around something near the back of
Uncle Rosco’s workshop.  As we approached, my mother joked, “What the hell
are you guys up to back there?”  And when they fanned out, we could
clearly see a shiny new motorcycle.  When my mom asked where it had come
from, they all started talking at once.  Over all the voices, someone
said, “I bet you can’t ride it.”  And just like that, as if someone had
flipped a switch, my mother dropped her purse and keys on the grass and
straddled the bike.  One of the guys had to kick start it for her, but
before he could tell her what to do, she took off, lurching and lunging,
through the backyard.  The yard extended to the Back Road where she drove
through a chicken-wire fence and plowed down a row of mailboxes.

As
she came to a rest on the Back Road, Chuck, Jim, and David—yelling for her to
stay put—took off running in her direction.  By the time they were halfway
the backyard, my mother had revved up again and was coming back toward the
house.  The guys, who seconds before were running
to
her, were now
running
from
her.  There was so much commotion that Uncle Rosco
came out of his shop to see what was going on.  Seeing the potential
hazard that was heading our way, he scooped me up and took me into the shop
before going back out himself. 

When
the disaster came to a halt, I stuck my head out to take a peek.  The four
stunned men were looking at my mother, who was quite calmly dusting herself
off.  She gathered her purse and keys off the ground and said, very
matter-of-factly, “I said I could ride it; I didn’t say I could stop it,” and
then she disappeared into the house and shut the door, leaving the men standing
around the bike, which was lying on its side.

Nicole’s
impulsive and intrepid personality, like her grandmother’s, made angst a
necessity.  Angst was as much a part of my life as my own two hands,
which, also by necessity, were often clasped in prayer.

 When Nicole
was diagnosed with diabetes at the age of nine, her impulsiveness intensified. 
Nicole and I were separated when she was diagnosed.  She had gone back to spend
the summer with Erma Lee.  It was during that same summer that I decided we
should move back north.  “Go ahead and let her start school here,” Erma Lee had
said, “and then you come on once you get things squared away.”  I had planned
to make the move in December, but in October Erma Lee called and said, “Come
home quick!  This chile’s got the sugar.”

When I
arrived, Nicole was in ICU.  She had been admitted to the hospital with a blood
sugar of 1100.  The nurse said that in her 26 years of nursing, she’d never
seen anyone with a blood glucose that high who was still walking around.  I
asked Erma Lee how she knew something was wrong.  “That chile was drinkin’
water straight from the tap.  Had her whole head down in the sink like a horse
at a trough.  Then she run upstairs and pee.  Drink and pee, drink and pee… the
whole time she was walkin’ sloop legged; I thought she was havin’ a stroke.”

Nicole
remained in the hospital for two weeks and received extensive diabetic
training, which included giving herself insulin injections.  When the doctor
asked her if she knew how she got diabetes, she said, “My grandma said I got it
from drinking all that sweet-tail Kool-Aid.”  But the doctor assured her that
nothing
she
did caused her to have diabetes. 

Most of her
stay in the hospital was spent trying to regulate her blood sugar.  It swung,
like a pendulum, from high to low, and when it swung, so did her mood.  For a
nine-year-old, she handled it all incredibly well.  She mastered her injections
and refused to let anyone else stick her.  Even during hospitalizations, the
nurses would let her administer her own injections.  She had a method that was
painless, and she never developed dimpling or track marks on her skin.

One thing
the endocrinologist stressed was that Nicole should drink plenty of water because
high blood sugar and dehydration went hand in hand.  After he explained it to
her, Erma Lee, fearing she might not have fully understood, explained it in
simpler terms: “Drinkin’ lots of water will keep your blood from turnin’ to
syrup.” 

If she didn’t
understand anything else about diabetes, Nicole understood that she needed to
drink lots of water.  Because of the diabetes, she was always thirsty anyway,
so the demand to drink lots of water was a win-win situation.  But when she was
diagnosed with renal failure and eventually placed on dialysis, this same win-win
quickly became a lose-lose. 

On dialysis,
she was restricted to 34 oz of fluid per day.  Normally, she drank five times
that much.  When they’d tell her to stop drinking so much, she’d say, “Do they
know what it’s like to be thirsty, and live in a house that has four water
faucets?”  She didn’t have to convince me.  I know all too well what it’s like
to be tempted in such a way.  I have difficulty sleeping at night if there’s
anything in the house with frosting on it.

The first
signs of kidney problems surfaced when Nicole was 13.  The endocrinologist
wanted to do a biopsy to see if the problem stemmed from the diabetes or from
another cause altogether. 

The biopsy
showed a condition called minimal change disease, and the doctor said it wasn’t
related to the diabetes, “It’s just one of those things that sometimes happens
to children,” she’d said.  Nicole was placed on prednisone, but it failed to
produce the desired results. 

When the
doctor had decided to do the biopsy, she’d told Nicole, who was reluctant to
have it done, “We can’t make you better if we don’t know what’s causing the
problem,” so Nicole was not happy when, after having undergone the biopsy, the prescribed
treatment wasn’t working.  She believed the doctors were working against her
getting well, and Erma Lee’s constant warnings to “Be careful what you let them
do to her,” had not fallen on deaf ears.

It’s
difficult for people to remove themselves from cultural mindsets, and one
mindset of the senior citizens in the Black community is to keep a healthy
distrust of the medical community.  The first time I’d heard that doctors and
hospitals shouldn’t be fully trusted was when Rux was ill, and Erma Lee had
suggested that his lack of recovery was intentional.  Then some years later, another
situation arose that seemed to validate the claim that not all doctors should
be trusted.

Erma Lee had
developed a bloody discharge from her breast.  She mentioned it to the doctor
she was seeing, who did a physical exam and said the bleeding was caused by hormonal
changes.  So for the following year, she kept a handkerchief stuffed in the cup
of her bra to absorb the blood.

However, when
she later went to the hospital because of problems with her ulcer, the ER physician
asked how long her breast had been bleeding.  She told him it had been going on
for about a year.  He insisted on a biopsy, and she agreed to it.  Although she
had gone into the hospital for her ulcer, she came out with a radical mastectomy
and a diagnosis of breast cancer. 

When Nicole
was diagnosed with kidney problems, Erma Lee insisted that I be vigilant in
keeping an eye on the doctors and their treatments.  This subtle suggestion
that the doctors couldn’t be trusted was not lost on Nicole.

Initially, when
the prednisone wasn’t working, the doctor increased the dosage to 60 mg a day. 
Nicole’s face grew as big and round as a dinner plate.  Also around this time, she’d
begun volunteering at a nursing home doing hair and nails for the women. 

One
afternoon when I went to pick her up, she was surrounded by three or four women
whose nails she’d just done.  One of the women said, “I was just tellin’ this
chile to be careful of the medicine those doctors try to give her ‘cause sometimes
you think they makin’ you well and instead they puttin’ diseases
in
you…
and what kind of medicine they got her on that got her swelled up like this?”  
When I explained what was going on with Nicole’s kidneys, the woman said, “But
Nicole said the medicine ain’t doin’ her no good.”

“Well,” I
said, “so far she’s not responding to the treatment.”

“Then you go
and get her pulled off that stuff; it’s killin’ her.”

And as she
talked, I wondered how I was going to undo the damage of her well-meaning words. 
I knew I couldn’t let Nicole volunteer there any longer.  As we were leaving,
one of the women said, “And get her a Black doctor; at least that way you know
they ain’t usin’ the chile for tesses.”
[9]

It wasn’t
long before the kidney doctor stopped the prednisone.   Besides not helping her
kidneys, the prednisone wreaked havoc on her diabetes.  The doctor told Nicole
that the shape of her face would soon return to normal.  “And what about
these?”  Nicole asked, pointing to the deep purple stretch marks that had developed
around her hips, under her arms, down her thighs, and behind her knees.  “It’s
called steroid-induced striae,” she explained to Nicole, “and it doesn’t go
away.”  Nicole was devastated, and it gave her one more reason to add a tick
mark to her score sheet. 

Nicole was
diagnosed with nephrotic syndrome and placed on blood pressure medication.  Her
kidney function remained at 60 percent until she was in her early twenties, but
when she developed an extremely severe case of double pneumonia, the doctors
were startled to find that her kidneys were functioning at less than 30
percent, and they told us we should start thinking about a transplant.   

From the
time she was diagnosed with nephrotic syndrome to the time she was diagnosed
with renal failure, Nicole was busy being a teenager.  And like many parents, I
often wanted to run through the streets screaming and flailing my arms like my
hair was on fire.  We were saved by one over-arching fact: we had an incredible
relationship, and there was never a time when we were not friends.

Ours was a
relationship of cycles.  She would travel down the road of life and often lose
her way.  If she saw a sign that said
Keep Out
, she’d usually go in.  If
there was a sign that said
Road Closed
, that’s the road she’d take.  If
there was a sign that said
No Swimming
, like her grandmother before her,
that’s exactly where she’d spread her blanket.  And on those occasions when she’d
stray from her path, I was devoted to helping her find her way back to the road. 

I worked
very hard at creating a balance of openness and respect.  I wanted her to be
comfortable enough to talk to me about absolutely anything but not forget that
I was her mother and that there were certain lines she shouldn’t cross.  This
was especially important to me because we were so close in age.  One thing I
learned early on is that if you say to a child, “Ask me anything; I won’t get
mad,” you’d better be prepared to follow through on your promise.

I was
driving when Nicole asked me a question that sucked the oxygen from my lungs. 
She had been sitting quietly, looking out the window, when she turned and
asked, “Mommy, can a girl get pregnant from doing oral sex?”  She was 11 years
old.  I didn’t know whether to rip my eardrums out or open the car door and
throw myself out on the pavement.  “No,” I said very casually.  “It’s
impossible.”  And I waited for her to continue the conversation, which she
did.  “I knew that girl was lying.”

“What
girl?”  I asked.

“This girl
in our class told me and Tasha that her sister was pregnant, but that she was
still a virgin because she got pregnant from doing oral sex.  We knew she was
lying because she lies about everything.”