Moving Forward in Reverse (36 page)

‘Sowwy,’ she chirped as I began dabbing regurgitated liquid from
her face and dress. It was the first English word she had used with me and our
first unreserved laugh together.

~~~

Sticking with tradition, Kali and I were greeted by a
Welcome Home, Kali!
sign, this one
complete with scraggly renderings of four-legged animals the approximate color
of our five dogs and two cats. There was a red and blue balloon to accompany the
yellow smiley-face Mylar, and a subsequent balloon-toting, sign-trailing
stampede in our direction when we emerged from the glass-walled hallway leading
into the waiting area.

This being my third such trip, I had managed to catch a few hours
of sleep on the return flight. Kali, however, was exhausted and had demanded
that I carry her through the airport. Seeing the barrage of children twice her
age running at her in a heedless torrent, she let out a small whimper and
quickly threw her arms around my neck.

‘Shhh,’ I cooed, letting the handle of my bag drop so I could wrap
an arm around Danny who was now clinging to my leg like a koala about to climb
a tree. ‘It’s okay. They’re your brothers and sister.’

Ellen was hot on the kids’ heels. She inched up to her new
daughter with the reverence and care of someone approaching a precious gem.

‘Hi, Kalista,’ she whispered, running a hand down Kali’s back and
drawing a wary, sideways glance from the scared child.

I transferred Kali into the loving expanse of Ellen’s open arms
and bent to dole out kisses to each of the other kids. After a cuddle and kiss
from her new Mom, Kali began to warm to her siblings; she even giggled when
Nadia began playing peek-a-boo with the happy face balloon.

In an instant, everything became perfect; just as it was meant to
be. Nadia adopted Kali as if she were her own child and the boys adopted some
of Nadia’s over-protectiveness towards their little sister. Where there had
been chaos before, mayhem now ruled the land. Quiet seldom existed between the
hours of sunrise and sundown and was even known to disappear for long stretches
of time after dark. I could hardly remember a time when life hadn’t been this
tumultuous, and found that I didn’t want to.

Maybe there’s something about giving, about reaching out and doing
good: once you do a little and get a taste for the sweet succor of its bounty,
you can’t help but want to do more. It would be a few years before Ellen and I
entered the adoption process again. This time our criteria would be narrowed by
the children we already had.

From the beginning we had known Nadia was the boss, the Mother Hen
of our brood, and no one could exceed her in age. But neither could our child
be younger than Kali, who had happily acclimated to being the baby of the
family. Ideally, we were looking for a child who could fall between the boys
and Kali in age, where there was a four year gap that seemed to be begging for
us to fill it. We also knew a girl would be best because the proximity of Andy
and Danny’s ages (being within one week of each other) might make it harder for
another boy to fit into their clique. With these determinants, our pool quickly
thinned to only a few children in a video we had requested from AAI and Layla
House.

It didn’t take long for our hearts to settle on Lauren. She had
been orphaned at five by a mother who died of AIDS and left to the care of
Layla House a year later by a friend’s grandmother who could no longer properly
provide for her. Despite all the hardships she’d endured, in the glimpse we saw
of her, her hooded eyes shone with an inner brightness which could not be
obscured by the sorrow lurking in her past. She wore her heart on her sleeve
and needed a stable family most of all.

Ellen, longing to experience Ethiopia and Layla House, decided it
was my turn to supervise the mad house while she made the twenty-four hour
journey to bring our fifth child home. Luck seemed to look more kindly on my
wife, as she managed to book a trip when the ANC circus wasn’t in town. But
luck couldn’t shield her from the heartbreaking juxtaposition on nearly every
street corner of Addis Ababa. Grandiose, multi-story homes towered over
neighboring ramshackle huts with at times no more than layers of tattered cloth
to serve as a roof. It is a capital of extremes where affluence and indigence
live side-by-side. For all its disparity, though, Addis Ababa is one of the
most peaceful cities in Africa. Crime rates are low, social conflict is
minimal, and the destitute poor seldom steal from their wealthy neighbors. One
of a kind, that’s Addis Ababa.

~~~

Lauren Mahlet (Ma-ha-let) Martin arrived just before her seventh
birthday to the requisite homecoming signs and balloons of our welcome-home
tradition. Unlike Kali, six-year-old Lauren was far more cognizant of what was
happening when she was ambushed by her new sisters and brothers. She simply
beamed at them with the same, captivating smile she had brandished in her
photos and happily returned the hug and kiss I had to force my way through the
excited mass to administer to my new daughter. The kids giggled and gushed in a
mesh of English and Amharic while I hugged my exhausted wife, a small,
self-satisfied smile quirking my lips at my very intimate knowledge of how she
was feeling. This time it would be Ellen’s turn to spend two days recovering
from her twenty-four hour trip across the earth.

With our world-weary travelers so exhausted and me hardly in the
mood to make dinner, it only made sense that Lauren’s first meal in the States
should be from Pizza Hut. We called in an order for four large pizzas with
various combinations of pepperoni, sausage, and bacon on various crusts and,
passing on my Wisconsin roots, extra cheese all around. When the pies arrived
it was a mad scramble for the table.

After Andy came home, I had realized that despite coming from
different parents and vastly different cultures, the kids became true brothers
and sisters; they fought exactly as Jeff, Lisa, and I had at their age. It was
no surprise that when it came time to take our seats around the dining table,
first dibs on who sat where came to those who were quickest to plop their butts
into open chairs.

As I was making my way to the table, arms laden with four fragrant
boxes of American tradition, Danny bolted to the front of the pack. He careened
around me with a gust of air and skidded into a seat on the left side of the
table.

Pulling out the chair to his right, he belted over the din of his
siblings, ‘Lauren! Sit here!’

Kali came scurrying into the room, her dress swishing around her short,
little legs and echoed, ‘Yeah, Lauren! Sit here!’ as she plopped herself into
the chair which would be to Lauren’s right.

I knew better than to involve myself in this melee and stood back
from the table, the pizzas held safely aloft as I waited for the rest of the
gang to tumble into the room and claim seats. Seeing the set-up unfolding
before her, Nadia looked to me with a distraught face that all but screamed,
That’s
not fair!

I gave her a tough-luck shrug and bit back a smirk. ‘In this
house, you snooze, you lose.’

~~~

Lauren instantly took to the ground trampoline in our backyard and
became a part of the family as if she had never been anything else. If I had
imagined life with four kids as chaotic, I quickly realized I had another thing
coming with five.

Still the devoted, if at times harassed, stay-at-home father, I
saw myself more as household dad Steve Martin in
Cheaper by the Dozen
than
Robert Reed in
The Brady Bunch.
We found our hectic rhythm, though, and
began to float on the euphoria of a full house; we had certainly been dealt our
winning hand.

In the same way Ellen and I had known we needed to adopt, we also
now knew all the holes in our family had been patched. Life was as it was
always meant to be: full and scrambling like a ship always on the verge of
taking on water but kept afloat by all the fingers ready to stuff a break in
the hull and the hands ready to bail buckets of water overboard. One thing was
for sure: we were never without.

41

As I slid into the passenger seat of Ellen’s blue Subaru Forester,
I found a sheet of paper being held beneath my nose. She had asked me to tag
along as she visited patients in hospice care while the kids were at school. At
first I thought the proffered paper must be a news article on the US Men’s
Soccer Team as they prepared for the upcoming World Cup. I realized when I was
able to focus my vision, a little cross-eyed, on the blocks of black, typed
text covering the page that it was something very different.

‘I’m not sure if this is something you may want to pursue,’ Ellen
said as I pinched the paper in the left myo and lowered it to a more
comfortable reading level. ‘But you should be aware that it’s available.’

My mind was still eagerly pondering lunch options for after we
completed her hospice rounds, so it took me some time to switch gears and
process what I was looking at. It was a black-and-white printout from an online
medical journal. A generous header proclaimed it to be from the Health Section.
A short article followed, fit neatly onto the front side of the page along with
a picture of a slightly rotund man in a black polo-shirt and eye glasses. He
was turned so his right side faced the camera as he lifted a small dumbbell in
his right hand.

My eyes drifted to a line of bold text, greatly overshadowed by
the advertisements and banner of the website, but which was clearly designated
as the title, nonetheless. ‘Hand transplant shows lost limbs are never
forgotten,’ it read. I stole myself for some sentimental story of a fellow
amputee’s plight and a noble but humble doctor’s success at saving his life.

What I got instead was a halting account of David Savage, a
fifty-seven-year-old man who lost his right hand in a machine press accident
three decades ago. After spending over half of his life with a prosthetic hook
(I felt camaraderie for the poor man already), he had recently received a hand
transplant. Now studies were showing that his brain was able to interact with
his new human hand as if it had never lost the original limb in the first
place. Sensory stimulation of David’s new right palm and fingers demonstrated
that the same parts of his brain would light up as when the test was performed
on four other men, each who still possessed their own hands.

According to scientists, this portion of the brain, called the
sensory cortex, “maintains a physical map of the body with different portions
registering sensations in the face, arms, and other body parts. After losing a
hand, the brain slowly cedes real estate in this region to the face.”

Still, the doctors involved couldn’t quite explain how David’s
brain was able to so readily reactivate this portion of his nervous-system
which hadn’t received any signals for over thirty years. “One possibility,” the
article claimed, “is that Savage’s brain never really lost the connection to
his right hand, instead his brain merely dialed down the neurons that map it.”

I took a breath and let it out in a slow, restrained exhale.
His
brain never really lost the connection to his right hand,
I read again. I
knew what they were saying – that his brain still had all the hardware to form
the connection just nothing to connect it to – but holding this single sheet of
paper between the forefinger and thumb of two myoelectric hands with two prosthetic
feet resting on the floorboards below, it was hard not to read more into the
sentence than was intended.

I had learned along the way that following amputation, my hands
and feet had been incinerated. At the time, I’d merely nodded.
Incinerated,
my
brain had repeated.
Makes sense.
What else were you supposed to do with
disease-ridden flesh? But still, I hadn’t quite been able to wrap my head
around the fact that they were gone; my hands and feet were gone. Forever. How
do you come to terms with the fact that four once integral parts of your body
were now ash? Cremated. In some ways, I knew even more acutely than the doctors
studying cases such as David’s how the brain could never lose its connection to
lost limbs.

When I lowered the article, Ellen glanced over at me, studying my
face and downcast eyes for a moment then quickly turning back to the road. I
wanted to share some piece of wisdom, to have an emotional reaction beyond this
dumbfounded blankness, but my mind was still working through images of my hands
and feet being consumed by fire. I hadn’t thought about the fate of my lost
limbs for over ten years. It had been one of the pieces of information about my
battle with the flesh-eating disease which I’d filed away in a black box and
tucked into a dark corner in the far reaches of my consciousness. I had become
quite adept at blocking things out over the past fifteen years.

‘What do you think?’ Ellen asked at long last, sneaking another
peek at my facial expression.

I shook my head slowly, dragging my focus up from the depths of my
mind.
What do I think? I think I’d rather not be cremated.

‘I don’t know,’ I replied truthfully, taking a breath of
heater-vent air. The world outside had begun to turn icy while everywhere
indoors had grown proportionately stifling; I felt oddly caught in-between:
cold on the inside but assaulted by heat on the outside.

‘Is this really an option?’ I asked eventually, turning to look at
Ellen because I didn’t want to stare at the image of David Savage and his
transplanted hand, wondering if he could really feel the chill of the metal
dumbbell he held.

Ellen’s mouth quirked in a sideways grin. ‘Put on your Sherlock
Holmes hat and start digging.’

Hands,
I thought, gazing down at the myos.
Real, human hands. I could
have human hands
.

Letting the paper rest in my lap, I surreptitiously turned the
myoelectric hands over above my legs, looking at the rubber-glove appendages
I’d worn for a third of my life and thinking only of all the things I had
missed. Touching Ellen’s hand, caressing the kids’ hair, playing catch –
I
could play catch!
My mind began to conjure images of the kids and me in the
driveway after school, standing beneath the glare of the late afternoon sun as
we played a game of PIG – our first game of PIG. I saw Andy taking a shot, the
ball swooshing through the net effortlessly then bouncing off the exposed
aggregate driveway and right into my open hands. Me: gently pushing the ball in
Kali’s direction, her little six-year-old fingers dwarfed by the
orange-and-black leather. Nadia: mothering her into taking the shot, pointing
her towards the hoop, tweaking her arms so she would aim a little higher, then
stepping back for her little sister to make her throw. For Kali, we’d spell out
PIGGY – maybe for Lauren, too – to keep the game fun for her.

Not being able to throw a baseball or football with my children
was one of the unforgivable consequences of prosthetic hands. I could reconcile
with the daily struggles – flipping pancakes, opening bags of chips, turning a
key in a lock – but being forcibly sidelined in my own children’s lives never
ceased to bring home with brutal clarity the fact that I was, and always would
be, handicapped. Until now.

~~~

That weekend I donned my ‘Sherlock Holmes hat’ as Ellen had
recommended and began poking around on the internet. Googling ‘hand transplant
surgery united states’ turned up two programs: one at the University of
Louisville and the other at the University of Pittsburgh. Feeling this was a
good start, I continued reading about each program and learned that hand
transplants were a new and risky business. The University of Louisville had
completed the first hand transplant in the United States, also marking the
first case of prolonged success in the world, less than ten years ago in 1999.
Their predecessors, a team in Ecuador and one in France, had been able to
successfully transplant the hands but the patients’ bodies rejected the donor
limbs shortly thereafter.

As with organ transplants, patients receiving hand transplants
were required to take anti-rejection medications to prevent their bodies’ from
attacking the newly attached limbs. If rejection were to occur, doctors would
be forced to amputate yet again. Unfortunately, along with preventing your body
from inducing an all-out assault on your new limb (or limbs), the
anti-rejection medications inhibited your immune system’s ability to fight
infection.

The doctors at the University of Louisville may have done it first
in 1999, but they also required the patient take two anti-rejection
medications. The University of Pittsburgh mandated only one. In turn, the
Pittsburgh team was the first in the world to introduce this single medication
therapy, known as the “Pittsburgh Protocol”. Figuring less was more in terms of
medication, I focused my attention on Pittsburgh. I found a number for a woman
named SaraBeth Probst, the Research Coordinator for the University Of
Pittsburgh School Of Medicine’s Plastic Surgery division.

~~~

SaraBeth took down my contact information and informed me that the
physician in charge of screening potential participants of the hand transplant
program, Dr. Brandacher, was out of the country until January. In the meantime,
she could email me some additional information and a questionnaire to fill out.
By the time I had replaced the handset in its cradle, an email from “Probst,
SaraBeth,” was waiting for me in my inbox.

Appended to the email, above SaraBeth’s pink, automated signature,
were two blue URL links.

The first took me to a website clearly put together by someone
more interested in medical science than design. No attempt had been made to
disguise the fact that the webpage was based on a generic template; the only
artful touch being the color scheme of purple and grey. ‘University of
Pittsburgh School of the Health Sciences’ was typed across the upper banner in
light grey text, backed by a dark purple rectangle of a banner. I wondered
briefly if this bland page was the work of the bustling SaraBeth who sent
emails while she talked.

In the middle of the page, on a simple white background, were
several paragraphs about the “novel clinical study on human hand
transplantation” which sought to “reduce the use of immunosuppressive drugs and
their damaging side effects for patients.”

According to the short essay, hand transplant surgeons had been
using multiple immunosuppressive medications which increased the risk of
disorders such as diabetes and hypertension in

patients. The team at the University of Pittsburgh Medical Center
was working to adapt a two-phase protocol, the goal of which was not to simply
suppress the immune system, but rather “to change the way it functions”. They
hoped to “re-educate” the patient’s immune system “into thinking that the
transplanted hand is not a foreign object.”

At the very bottom of the page was a single paragraph advertising
their need for patients to partake in the study. “Eligible subjects will be
invited to undergo a comprehensive informed consent process and placed on the
transplant list to await a potential donor,” it promised. “Those who receive
transplants will be expected to stay in the Pittsburgh area for three months
after the surgery to undergo extensive therapy and careful monitoring and
assessment by physicians.” To be eligible, however, you would first have to
undergo “intensive medical screenings and psychological evaluation”.

Psychological evaluation,
I mused and was promptly confronted with the
cold fact of what I was about to do. Physical rejection of the limbs was only
one part of the issue. There was still the whole psychological aspect of
learning to accept donor hands attached to the ends of my arms. Dead man’s
hands. In the end, they wouldn’t be anymore “mine” than the myos were; simply
commandeered from someone who had no use for them anymore.

I looked down at the myos, the left, lying horizontally across the
edge of the desk with the fingers hovering stiffly above the polished wood, and
the right, awkwardly cupping the trackball mouse. I stared at the pasty, beige
rubber covering the spindly metal skeleton beneath. What did it matter where
the transplanted hands came from? I’d be able to
feel
again and have
hands which could move lithely with more than one joint along each of the
fingers. Maybe they wouldn’t be any more “mine” than the myos were, but they
wouldn’t be any less, either.

~~~

We were flopped across and around the sofas in the living room,
watching the CBS Evening News as my family used to do when I was growing up,
when my phone rang with a 412 number illuminated on its screen. I slid from the
sofa, skirting around Ellen’s legs and Fritz’s nose as I made my way towards
the stairs.
This has to be it,
I thought with a note of fervent prayer;
the call I’d been waiting for.

Flames crackled in the fireplace as I swerved near the hearth to
avoid Stuart, softly snoring on the warmed cement below. I hastened towards the
stairs, ignoring the chill that was no longer warded off by blankets and
Ellen’s body heat in my urgency to find somewhere private to take my call. By
the fourth ring I was making my final dash up the steps into the loft office
and didn’t dare wait any longer lest my voicemail beat me to it.

‘This is Scott Martin,’ I tried not to huff into the phone.

‘Hi, Scott. It’s Dr. Brandacher,’ lulled a man’s voice from the
other end. It was tinged with an accent that tinted his vowels, making them
slightly more pronounced than the casual drawl we spoke on the West Coast. I
had spent several hours researching the University of Pittsburgh’s hand
transplant program and Dr. Brandacher in particular., I knew he had received
his education in Austria, where he had also performed both single and double
hand transplants, before coming to the U.S.; I supposed that made his accent
Germanic in origin.