by Scott Martin
~~~
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.
‘I read over your information and wanted to talk to you personally,’ he went on, a soft V-sound catching on the W in wanted. ‘Is this a good time?’
‘Sure is,’ I told him, slowly lowering myself into the office chair.
‘Okay. So, tell me about your illness, Scott, and how you’ve been able to get to where you are today. It sounds like it must have been an incredible journey.’ His voice had a very down-to-earth tone to it, causing the request to sound like an invitation.
‘It was a journey,’ I conceded, taking a breath as I leaned back in the chair. I had been prepared for an interview where I was grilled on my worthiness from top to bottom then back again, but in a few short sentences, Dr. Brandacher had already banished any such strenuous ideas. He was surprisingly easy to talk to, projecting a casual, carefree sort of attitude which coaxed you into trusting that he wasn’t the type to judge quickly or be unnecessarily critical of others.
I began to describe my bout with the flesh-eating disease to Dr. Brandacher, careful not to over-explain concepts I was sure he had greater familiarity with than I did. I was pretty certain I knew what they were looking for in potential applicants. The university had already invested a great deal of time and money into the hand transplant program, so what they needed now were people who could handle the training required to receive a positive result. And, a lot like with the head coach position at Gonzaga, someone who could present a favorable face for the program and, most importantly, produce wins.
I did my best to tailor my answers according to this theory, dropping key words like “attitude”, “overcome”, and “confidence” whenever possible. I made a point of mentioning our adopted children and what it would mean to all of us was I to receive transplanted hands. No details were withheld when it came to my recovery from the flesh-eating disease. Dr. Brandacher got the full-length version of what I had to do to regain a sense of normalcy after my amputations, followed, naturally, by an unfeigned vow that I could do it all again. Not only that, but it would mean a lot to me to be a part of helping the concept of transplanted hands move forward.
‘With all the soldiers returning from Afghanistan and Iraq with missing limbs, we really need something like the Pittsburgh Protocol,’ I said to him. I couldn’t say if it was just me, because I knew the pains of living without a sense of touch that I felt so bothered by the amputees returning home from battle or if everyone was as distressed as I was. Whatever the case, I told Brandacher how I felt, declaring, ‘They deserve more than prosthetic limbs.’
When his questions ran out and I had offered my last sales-pitch response, Dr. Brandacher sighed, his voice dropping on the word, ‘Well’ before falling silent for a few breaths more.
‘I’ve never done this before,’ he confided at length, his words traveling sluggishly across the phone line as if he wasn’t quite certain he wanted to let them go just yet, ‘but my gut tells me that you’d be perfect. When can you come to the University for the first round of tests?’
~~~
Ellen rolled her head back to look up at me as I crept back into the living room, raising her eyebrows inquiringly at my unrevealing expression. I waited until I had navigated the mats of dogs lying on the floor and was easing back onto the end cushion of the sofa before giving her a small smile.
‘I passed Screening Round 1.’
Her raised eyebrows peaked in the middle as a grin creased her cheeks.
She reached up to draw my face in for a kiss on the cheek, gushing, ‘That’s great!’ as she released my head. Lauren twisted on her end of the sofa, shooting a curious glance our way.
‘What’s great?’ she asked, eager for anything other than the evening news to focus on. I looked to Ellen, who shrugged concisely and glanced meaningfully down at the remote resting in her lap. The ball was in my court.
We hadn’t told the kids about my opportunity for hand transplants yet, not wanting to create unnecessary drama in their lives before any actual steps had been taken. I guess being invited for the first round of tests qualifies as an actual step, I mused and nodded for Ellen to mute the TV.
When everyone’s eyes swiveled to me, our Boston Terrier, Yaz, releasing a contented sigh and flopping over so his back fell across the front of my slippers, I told them about the study. I watched their mouths grow round and eyes shift to Ellen for clarification – or perhaps verification – as I told of the medically-advancing program I might be a part of.
They all had a solid understanding of English by now, but transplants may have still been an unfamiliar word. I opened my mouth to explain further, but Andy beat me to it.
‘Will you be able to play basketball with us?’ he asked, getting to the real heart of the matter. I smirked at him, his eyebrows two hopeful peaks above dark brown eyes.
Nodding, I vowed, ‘And I’ll kick your butts doing it.
42
Questions of Concern
Ellen and I returned home after my first round of tests in Pittsburgh to frantic tongue baths from the dogs and a well-intentioned inquisition from the kids.
‘Where are your new hands?’ Kali asked as I scooped her up for a welcome-home hug.
‘That won’t happen for a few more months, kiddo. This was just a doctor’s visit.’
‘Oh,’ she replied, settling back onto her feet as I grabbed my bag to head to the master bedroom. She sounded dismayed, as if I had just walked in on my surprise party unannounced.
I only made it as far as the bed before I was bombarded with more questions from the rest of the gang. Content to weather my final examination, I settled onto the bed, pillows propping my back and Kali snuggled by my side with our new white Chihuahua puppy, Luna, laying in her lap.
‘Did any of the tests hurt?’ Danny asked, slumping across the foot of the bed. In two packed days, I had met most of the Pittsburgh team, had sixteen tubes of blood drawn, x-rays taken; and undergone a Pulmonary Function Test, abdominal ultrasound, and MRIs of both hips. I was beat but otherwise unharmed.
‘Nah. They were a breeze.’
‘We also ate at some very nice restaurants, didn’t we, Scott?’ Ellen interposed as she sorted her luggage into ‘laundry’ and ‘not laundry’. I knew she was trying to divert the discussion to a lighter topic for my sake. I appreciated the gesture, though I wasn’t nearly as harried by this juvenile interrogation as she might suspect.
‘Sure did.’
The kids didn’t bite.
‘So now what?’ Andy asked, idly tracing the outline of a blotch of black fur across Yaz’s back from where the two lay on the floor side-by-side.
I sighed and shifted my legs, earning a deprecating glare from Luna who was delicately jostled in the process. ‘I have to do one more round of tests then –’
‘More tests?’ Nadia butted in. I looked across the room to where she was perched by the window, her brows puckering in the middle and a disapproving frown curving her lips. My little mother hen, I thought with a smile at her protective nature. Not so little anymore, though.
‘Unfortunately. But they’re nothing to worry about. Standard procedure. Your Tata is in good shape,’ I told her with a smile as I flexed my biceps in a mock-bodybuilder pose. Her lips flickered upwards, but I could still see the concern shadowing her eyes before she glanced away.
‘Then surgery?’ Lauren piped up, turning from where she’d been helping Ellen sort clothes.
‘Yup. Then the surgery.’ I tried to keep the feeling of impending dread out of my voice. No matter how favorable the odds or talented the surgeons, surgery would never cease to be an adverse and macabre undertaking. And I had had more than my fair share of it already.
I must not have been as inscrutable as I had hoped because Nadia narrowed her eyes and asked, ‘How long will that take?’
I turned to meet her gaze, trying to hide the wince I felt tugging at my expression. The length of the surgery wasn’t one of the pleasanter aspects of this whole ordeal. Heck, next to the rejection medications and three months of physical therapy, it was probably the worst. I didn’t like to worry them, but I liked the idea of lying even less.
‘Twelve hours,’ I told her softly. It was rounding down on what the true timeframe was likely to be but I couldn’t bring myself to leave it open-ended the way Dr. Brandacher had. Upwards of twelve hours just sounded too ominous and vague; I feared to their young, overly-imaginative minds it could translate into a surgery which lasted days.
Silence followed my admission. Nadia pursed her lips, considering this number. Andy slowly turned to his perusal of Yaz’s splotches of white and black fur, a worried furrow to his brow. I lifted my eyes to Ellen, catching a glimpse of Lauren’s confused expression, her eyes frantically scanning each of her siblings’ faces as if questing for answers. I watched her eyes rove from the back of Andy’s head to Danny’s profile on the edge of the bed and Nadia’s disapproving frown from where she leaned against the window, her face turned towards the glass and the trees visible beyond it. Ellen offered a what-can-you-do shrug as she gazed at the quiet, troubled faces of our children from behind her splayed suitcase, carefully shifting folded piles of cold-weather attire to a shelf in the closet.
‘Tata is going to be in the hands of some of the best surgeons in the entire world,’ she said when I shot her a help-me glance. She drifted from the closet to sit on the edge of the bed between Danny on the mattress and Andy hunkered on the floor. She ran a loving hand across Danny’s back. ‘These doctors are very, very good and have done lots of surgeries on lots of different patients.’
‘Surgeries like the one Tata is going to have?’ Nadia asked, surprising me with her acumen in the face of Ellen’s casual ambiguity.
‘No, not many like Tata’s,’ Ellen conceded. There were other patients in the program, but none had been matched with donors as of yet and thus remained in the same boat as me. ‘But they have done lots of surgeries, giving people new livers,’ Ellen said, reaching down to touch Danny beneath his chest where his liver was located, ‘and even hearts.’
‘They can do that?’ Danny asked, his curiosity suddenly piqued. He twisted on the bed to peer up at Ellen. ‘They can give people new hearts?’
‘They sure can,’ Ellen replied with a smile. ‘They can give people almost anything they need now.’
‘Wow!’ Danny whispered wistfully, reminding me of the toddler he once was. I smiled in remembrance of his enthusiasm for planes and big trees, James Brown and learning how to swing. How different his early childhood would have been had I found this surgery back then, I mused. How different all of their childhoods would have been. Swinging would have been just the beginning of the things I could have shown them.
Before the illness, when friends had commented on how my children were sure to be soccer players, my response had always been the same: ‘I will never press my kids into soccer. They need to find what makes them happy.’ Then came my illness and kids fell out of the picture. Until Ellen.
Now, as a father of five, I was keeping true to my word. Even though they each dabbled in soccer, it was just that: dabbling. None of the kids had fallen in love with it the way I had and I was fine with that. It was my passion; it didn’t have to be theirs. But still, I would always wonder if perhaps, had I only been ‘complete’ with hands and feet, and continued to play as they grew, they might have picked up the nuances
and challenges of the game from me in the backyard. Worse than not being able to play soccer, though, was the simple fact that my father hadn’t been around to show me how to throw a curve ball and now I wasn’t there to show my kids. It stung me to the core; left me weak and riddled with thoughts of not being good enough because I wasn’t whole.
I swallowed the knot in the back of my throat and squeezed my eyes shut to obscure the pain. You know better than this, man, I mentally scolded myself. What’s done is done. All you can do is try to be the best father you can be with what you have. I was intimately aware of our inability to change the course of past events and that any time spent wishing otherwise was an exercise in futility. It was the future we were still fighting for; the future which still held hope for change.
Slowly, I opened my eyes and found myself peering at Lauren. Her frown was bordering on a pout as anxiety drew shallow creases in the soft skin of her forehead. I started to lift a hand, thinking only of smoothing those lines away before they became any deeper, but when it was the myo and not a tender, human hand which hovered into my peripheral view, I quickly subsided.
Ellen must have perceived at least some of the torment coursing through each of us because with a clap of her hands on her legs, she cheerily asked, ‘Should we order pizza?’
This proposition drew enthusiastic approval from around the room as Kali leapt to her feet on the bed, tumbling poor Luna onto her back, and cheered for pepperoni. I kept my eyes on Lauren, hoping she would share her concerns with me. When she finally met my entreating gaze, she had already blinked the thoughts from her eyes.
I offered her what I hoped was an understanding and reassuring smile as I sighed and hoisted Kali over my lap and onto the floor to help with the topping selection. Maybe we had had enough serious conversation for one day. We could resume this discussion later, after pizza and a night’s rest. There was still time.
