by Scott Martin
Layla House had become overrun with orphans since I last visited Ethiopia to bring Andy home. As a result, Kali had been living under the care of a woman who operated a make-shift orphanage out of a shipping container. Coincidentally, a few days before I arrived, a bed opened up in Layla House, so I never had to experience the conditions of the shipping-container orphanage. Having seen the homes most people occupied, though, I could only imagine what such a situation would be like. But no matter how dilapidated the place may have been, I was thankful to the woman who put the effort into running it. Better a cramped and sagging shipping container than the cold, infested streets of a starving nation. And now I knew she had at least acquainted her charges with the joys of Coca Cola.
I reached for another French fry while Kali continued to slurp her soda. As I was bringing the fry to my mouth, some spurt of spontaneity made me divert its course to my nose. I nudged Kali with the right myo. When she turned to peer at me, I grinned dopily at her from behind the fry dangling out of my nostril.
She started to giggle mid-gulp. Before I could rescue the straw from her mouth to prevent a choking incident, brown liquid began spewing out of her nose. Giggles turned to open surprise as she stared cross-eyed at the liquid dribbling down her chin and onto her crisp, Carolina blue dress. I burst into laughter, unable to contain myself at the startled expression on her face and the Coke oozing from her nostrils. She blinked, looked up at my tickled expression and smiled sheepishly.
‘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
The Pittsburgh Protocol
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 recomme
nded 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.
