Read Some Kind of Normal Online
Authors: Heidi Willis
Tags: #faith, #family life, #medical drama, #literary fiction, #womans fiction, #diabetes
We stand for a few minutes by the fountain, waiting.
I watch fluorescent orange fish swim around in the blue mosaic
tile. The colors make my eyes hurt, and the trickling of the water
makes me need to go pee.
"Are you sure you have the right place?" Travis asks,
which is the most he's said to me all morning. The door opens
behind us, and Dr. Benton enters, a thin man following.
"You beat us! Jack's airplane was a little late and
traffic was a bear!" Dr. Benton leaned over and kisses me on the
cheek in such a natural way I blush. He shakes Travis's hand and
introduces us to Jack.
"Mr. and Mrs. Babcock, this is Dr. Jack Van Der
Campen."
There's something familiar about him. His eyes. I
swear I've seen him before. I shake his hand and glance at Travis,
but he don't show any recognition.
A small woman in a multi-colored skirt and white
ruffle blouse motions us to a table and hands us sticky menus. Once
we have chips and salsa and drinks in front of us and have ordered,
I lean forward.
"Do I know you? Have you been on TV or
something?"
The doctor smiles a barely-there smile. "I doubt it.
We scientists aren't that famous."
"Jack worked at Johns Hopkins for many years. He's
been on the leading edge of diabetes research for the last decade
and has some very promising results in curing type 1 diabetes."
At the word "cure," I reach over and squeeze Travis's
hand under the table. He wriggles it out and uses it to pick up his
Dr. Pepper and take a drink before saying, "Why has it taken so
long to find him, then?"
"I've been out of country," Jack says, not at all
acting offended. "I've just finished up a series of operations in
the Netherlands, and I'm applying to start a clinical trial here in
the U.S. I'd like Ashley to be a part of it."
"Like a guinea pig?" Travis says. I stomp on his
foot.
"Not exactly, Mr. Babcock."
"Travis."
"Travis. What we want to do has already been proven
effective and safe, both in animals and in humans. We did the
surgery on 35 teenagers and young adults in the Netherlands, and a
year later, 27 of them are insulin independent. The rest are
significantly more stable and use far less insulin. None had any
adverse reactions."
"So, why is this the first time we're hearing about
this?"
"Because the United States doesn't take much stock in
medical trials in other countries. They have to have all the
paperwork in order here. They want the government agencies to
oversee the process to make sure every patient is adequately
protected."
"When can we get Ashley the surgery?" This time
Travis stomps on my foot.
"We need to know more about what it is," Travis
says.
"Of course you do." The enchiladas arrive, plates
steaming and heaped with rice and black beans. For a minute no one
speaks as we shuffle the chips and salsa and tortillas and drinks
to make room for the plates, but we quickly fall into eating and
talking resumes.
"Even if this is something you all decide to do,"
Jack continues, "it's not going to happen tomorrow. Setting up a
clinical trial takes a little time. Everything's been filed, but
we're still waiting for the FDA to approve it, and there's no way
of telling when that would be."
Travis stabs at his food. "What exactly is a clinical
trial? It sure sounds like just a fancy names for using humans as
guinea pigs."
"I assure you it's much safer than that."
"A clinical trial is federally regulated," Dr. Benton
adds. "All of the ethical and legal codes that apply to all medical
practices apply. There is a carefully controlled protocol--"
"A what?"
"A study plan. The doctors and researches have to
know exactly what they are going to do and follow it. The entire
thing has to be approved and monitored by an Institutional Review
Board, which includes physicians not involved in the research, as
well as statisticians and community advocates."
"That sounds like a bunch of gobbeldy-gook to me,"
Travis says, still not eating.
I'm mortified, but Dr. Benton laughs and even Jack
smiles a little while shoveling a tortilla smeared with beans in
his mouth. "It just means there are a lot of people looking out for
the participants."
"How many people were cured?" I ask, trying to get
back to what is important.
"27 of 35 received complete independence from
insulin. In essence, they are cured."
Travis picks up his fork again and begins to separate
the rice and beans. As he spreads guac and sour cream over his food
he says, "I'm not real good at math, but that don't seem like much
better odds than a transplant."
Dr. Benton motions to Jack to answer. "It's slightly
higher, actually, but the trial in Holland gave us great
information in how to modify the process. We fully expect the
success rate on the U.S. trial to be much greater."
"And the risks?"
"I won't lie. There are some serious risks. Part of
the treatment involves the killing of Ashley's entire immune
system. For awhile she'll be extremely vulnerable."
"You're killing off her immune system?" Travis's
voice is loud enough to draw the attention of the boys in the
booth.
"The problem of transplants," Dr. Benton says,
leaning forward over his plate towards us, "is that the reason
Ashley has type 1 is because her immune system attacked her
pancreas and killed the islet cells. If we just transplant a new
pancreas, or even new islets cells, we have the same issue all over
again. The dead islet cells are the symptom, not the disease. With
this treatment, Ashley will basically heal herself, but we have to
make sure we stop the immune system from putting us all back at
square one."
It strikes me at this moment that I've understood
everything he said. I don't know how to set the clock on my DVD
player. I can't understand my oven instruction manual to set the
time-bake, but I understand every word a doctor says about pancreas
and islets and immune disorders. This makes me laugh, not the funny
kind of laughing but the kind that turns into choking and coke
coming out my nose and soon turns into tears and I have to excuse
myself in utter embarrassment.
Travis follows me out, more not to be alone with the
doctors than to be with me, I suspect.
"What's going on?"
"I don't want to know what he's saying," I sob, aware
this is making no sense. "I want to be stupid again."
God bless him, though, Travis understands. He puts
his hands on my shoulders and hunches enough to be eye to eye with
me. "There ain't no going back, Babs. And Ashley needs you to be
just this smart. Smart enough to know if this is the thing that's
going to save her or kill her. That's our responsibility, and no
one can make that decision but us."
I sniff and wipe my nose on the napkin I've carried
out with me. "What if we make the wrong one?"
The air outside the cantina is stifling. Marimba
music floats out the door. Travis lets go of my shoulders and
straightens. "We won't. We go in and ask all the questions to get
all the information we need to make the right one."
I realize I've felt like he and I are on different
sides, fighting each other more than the disease. He takes my hand,
and we walk in together and sit back down.
Dr. Benton and Dr. Van Der Campen act as though
nothing happened. We eat for awhile, gabbing about Texas heat and
European winters, and NASCAR, which, it turns out, both Travis and
Dr. Benton have an affinity for. We eat until there's nothing left
but a few crumbs from the chips. I haven't eaten so much in over a
month. If I hadn't lost weight lately, I'd be unbuttoning my jeans
under the table. As it is, I feel faintly sick.
The waitress clears the plates and brings a platter
of sopapillas dripping with honey and cinnamon, and the men all
order coffee. When the cups are full and the waitress is gone,
Travis breaks the light mood.
"So," he says. "Tell us about this miracle
treatment."
~~~~
We get a steady stream of visitors, and I imagine
somewhere in the narthex of the church is a sign-up sheet labeled
Babcock
visitations
. Little by little the kids have stopped coming,
which is probably a good thing as Ashley is well beyond lip-gloss
and blush and hardly is up for entertaining, but the women try to
make it down at least three times a week.
Brenda always brings food. Pulled pork sandwiches and
coleslaw. Peach cobbler. Biscuits and honey butter. Baked beans.
She hands them over with apologies, knowing food is an ironic gift
but the only way she knows to show her pity. If Logan is here, he
sneaks it down to the cafeteria and polishes it off, and if he's
lucky, makes a few friends with off-duty nurses.
Yolanda brings DVDs and board games. Gloria brings
flowers from her garden. Janise brings pictures. She must spend
hours every day following Ashley's friends around town and taking
their pictures. She brings them in and hangs them around the room,
so that when Ashley is awake she's surrounded by the people who
care about her.
Donna Jean brings books; mostly books she thinks
Ashley will like, and I spend hours sitting by the bed reading to
her. I feel like she's five again, when we used to curl up on her
bed and read for hours, her begging for more and me just trying to
get her down for a nap.
There are other books tucked down in the paper bag,
too. Ones for me to pass those long hours when Ashley is asleep and
Logan and Travis are back at home, working, and I've got nothing to
do but imagine every awful possibility.
When I come back to the hospital after lunch with the
doctors, Ashley is semi-sitting up, the bag of books spilled over
the covers. She's running her hands across them, shuffling them,
trying to find something.
"Do you want me to read to you?" I ask, picking up
the books and putting them back in the bag. Some are on the floor
and I've got to get on my knees to find them.
"There's one about faith," she says.
"I don't know that one. I'll find you more of Lois
Lowry," I say, rummaging through the bag.
"I want the quote book," she says, her voice airy and
wispish, like she's nothing more than a ghost.
"How about Anne of Greene Gables? That was always one
of your favorites."
"I want the quote one, Mama."
"I don't know that one." I try to persuade her and
wonder if she's hallucinating. "How about we finish up
A Wrinkle In Time
?" I
find the raggedy copy that's ours, the one she's read so many times
the cover is hanging loose and the pages falling out. Ashley gives
in, and I open to where she dog-eared the page. It's nearly
finished.
I usually try to steer her away from this one. It's
full of strange words; long ones I don't know and made up ones I
can't pronounce. But today I'm relieved to be in a world so
different than the one we're in.
Ashley lays back and closes her eyes, but I can tell
she's listening. Like when she was a kid, she's in the book, in the
imaginary world, playing the part of the main character. It's
fitting that there's an untouchable, unknowable villain in this
story, one that weakens and takes over the people that come to it.
I almost tear when I get to the part where Meg's dad tells her,
"But I wanted to do it for you. . .That's what every parent wants."
I stop here, a lump in my throat.
God
, I pray,
if it could be me in that bed instead of
her
. Ashley opens her eyes. She knows what I'm thinking, but
she whispers, "Go on."
I read through another page, until I get to Mrs.
Who's advice for Meg. I can't go on. Ashley, who knows this part by
heart, begins to say it in her wavering, thin voice.
"The foolishness of God is wiser than men; and the
weakness of God is stronger than men. For ye see your calling,
brethren, how not many wise men after the flesh, not many mighty,
not many noble, are called, but God hath chosen the foolish things
of the world to confound the wise; and God hath chosen the weak
things of the world to confound the things which are mighty."
I've heard Pastor Joel read this very thing in church
before. I look at Ashley, not able to get herself to the bathroom,
and think about how she's confounding science. And I wish God
wouldn't have chosen her.
"What did Dr. Benton say?" It's the first she's
asked, and I close the book.
"He says there's a new possibility, and it's up to
Daddy and I to decide if it's right for you."
"What is it? Are we going to do it?" I see the hope
flickering in her eyes, and I want to say
yes! Yes, we start tomorrow and this is
all going to be over before you know it!
"We're considering it." That's a generous statement,
seeing as how Travis stayed for ten minutes of the explanation at
lunch and then stormed out the moment stem-cell replacement was
mentioned.
"You can't possibly be listening to them," he said
outside the restaurant as I begged him to come in. "Did you hear
them? They want to do stem-cell research on her!"
"I want to hear what they have to say at least before
I say no."
"Do you know who he is?"
I don't. I been trying to put my finger on it all
lunch, and the fact that Travis knows him makes me feel like I'm
not going out of my mind.
"He's one of the pioneers of stem cell research."
When it's clear I don't get the meaning of that, he added,
"Embryonic stem cells. He takes aborted babies and uses them for
science." When I don't react strong enough to that, he continued.
"He lobbied congress to make it okay to use eggs fertilized for
invitro treatments to grow into embryos and kill them for
research."
Suddenly it dawns on me where I seen him. The posters
at the rally. The ones with the scientist and the red slash through
him: that was Dr. Van Der Campen.