He was more than a name on a waitlist.
I once needed a liver. My name was never on any official organ transplant waitlist, but I spent years plead-praying for one the way non-spiritual desperate people do when their lives depend on something fully out of their hands. I wasn’t on any official waitlist because the liver was not meant for my body. It should have been surgically placed into a loved one’s side and by operation kept my heart whole, but it never came.
Losing a loved one prematurely is heartrending, but losing a loved one waiting for an organ is tauntingly cruel. A waitlister’s family stands by as the precious cure is locked behind a giant door and no one can find the key. Everyone is looking, ransacking, but that illusive key is tucked away somewhere out of reach. The door won’t budge, there’s no shaking it open, breaking it down. We search our pockets, try each of our own keys to find a match. And then, time is up. The key and cure are lost forever and we are left pounding the door with no purpose.
Most know the basic hopeful science and dismal math behind the current state of organ procurement. Medicine can now stretch the utility of a single cadaveric donor to save up to eight lives and better up to fifty more. Still, would-be recipients outnumber donors by multitudes.
Some cryptic organ-distributing authority keeps a living list of every person who needs such a replacement part. That list is long, reaching 121,248 nationally as of March 30, 2016. But that list fails to measure our true condition. There is a secret, more accurate tally, which includes the names of everyone who stands to lose all that is at stake. That’s a much longer list and its reluctant members keep trying to get the procurement system, law and medicine to meet somewhere, perhaps over a drink, and discuss their differences, needs, and expectations. That unofficial list is where my name appears, shoutingly in all caps.
My uncle was my guy. My father did not have a stabilizing presence (he was periodically present, never stable), but it didn’t matter much because I had this solid surrogate. One of my first words was “Tata,” which is how I would call for him when he was a bachelor living with toddler me and my parents. I saw him as a giant of will and humor and also literally a giant, as his six feet and broad shoulders towered over the common nerdy frame of my father and their shared friends.
Eventually, there was no pretense that I was the most important person in my uncle’s life. He married a beautiful woman, Mervatt, and they had three boys, Tony, Peter and Bishoy, each a test of strength in a different way. Tony was often rascally, Peter would politely excuse himself to the garage and scream out pent up energy, and Bishoy only wore button down shirts and ties, even to play basketball with the rest of us.
I appreciated my uncle and his time that much more because he burrowed out space and love for me in his full, happy life. Per Favorite Uncle Protocol, I never blew out a single birthday candle without him behind me, threatening to push my face into the cake. But well beyond his duties, we ate dinner together a couple of times a week, conferencing about my friends, frenemies, and teachers, each of whom he knew by name. I rarely walked out of school with a boy or a friend smoking a cigarette because he randomly chauffeured me home in his towncar. While I could do no wrong, my company was not safe from his tradition-bound temperament. “Are you stupid or something?” he’d yell, flipping his hand over like “stupid” was one side and “something” was the other and the poor, at risk youth had to pick one.
Every Saturday began early with a honk of his horn. My sister, Mary, and I would scoot into the backseat and hold on tight because he never needed to brake. We’d sprout up at the giant outdoor farmer’s market in Paterson for fresh fruits and vegetables, occasionally fish. He’d start breakfast before the car was unloaded. Most often, it was pancakes with homemade syrup. (We especially loved his peach syrup, so that was the only flavor to appear off-season.)
Full, I’d go off and read a book or study in some nook of his house. At some point, he’d find me and exaggerate urgency to, “Put that goddamn book down and go play a goddamn video game,” or “Put that goddamn book down and go play basketball with those boys.” And I would. I was always glad I did. He had a way of knowing what was good for me, if not right. I valued his opinion because he valued me in forming it.
On a bright afternoon during a family vacation Mary and I crashed, the delivery Vespas at my aunt Violette’s restaurant in Nieuw-Vossemeer, Holland, stood neatly on the cobblestone sidewalk, waiting to be stirred by phone orders. One of his boys asked my uncle if they could go for a ride around the picturesque country town. He obliged and took each of the boys, one by one, puttering down the idyllic Main Street, book-ended with cows and a peaceful pond. He looked revived to his pre-waitlist self by revving the engine of the small motorcycle each time he rolled away.
Before I could ask myself, someone wondered out loud whether I could ride alone.
“Of course she can,” my uncle answered.
“Of course I can,” I followed. He assured me that he drove a real motorcycle when he was my age and there was nothing he’d done that I couldn’t do better.
He waved his hand around the front of the bike, casually gesturing stop and go instructions. The bike was facing the wrong way on the narrow one-way street. He told me to get on the bike, pivot around slowly, regain my balance, and take off. I nodded and straddled the bike, excited and nervous.
In one swift movement, I whipped the handles left and flicked my right wrist back, suddenly gassing the bike straight into a parked car across the street. Somehow, I slipped under the car like a dollar bill under a bureau. The bike’s back wheel spun an eyelash’s length away and feet ran towards me. I stayed still as my uncle’s eyes looked frantically for mine under the car and found them. I was uninjured, blinking back. Laughter bubbled and burst between us. He laughed his eyes closed and sucked air in so forcefully he might have pulled his teeth further into their signature inward slant. I laughed as others dragged me back into the sunlight and lay on the ground until I regained composure.
Quite artfully, he never let me live that down and never let me believe I couldn’t get back on that (or any other) bike.
He’d bring up my humiliating trajectory when I sat beside him waiting for a doctor visit, at emergency room intake, or in a hospital room gathering his things for discharge, and we’d laugh ourselves into a silly pause each time. In those moments, his arms were as bruised from the poking and prodding of IVs as mine were from my slip and slide incident, each of us pulled to safety one more time, again, by the other.
I was nineteen when my then-boyfriend of three months, Ulysses, dropped to one knee and asked me to marry him. I initially said yes, but then revised my answer: “I can’t marry you if my uncle doesn’t like you.” As to be expected, most relatives and friends had serious reservations. I could dismiss any but my uncle’s.
Near the end of their first meeting, I told my uncle the deal, “I won’t marry him if you don’t like him.”
“Does he make you happy?” he asked.
“Yes.” I said.
“Then, I love him.”
I landed my first real job months before graduating law school, and I called my uncle with the good news immediately. He promised to send me flowers on my first day. He was proud I was going to be among the big shot lawyers he sped away from the green skyscraper on Maiden Lane late at night when he was still a healthy, working driver.
“Maybe I’ll be better by then and I’ll get to drive you home,” he coded our shared hope for a new liver.
“That way I can tell you everyday exactly how it’s going,” I answered.
He passed away before my graduation.
There was no magical moment where we all convened at the hospital to see his life-saving insert, cradled in a nondescript cooler, hurried into an operating room where he was asleep, soon waking to a new life or better still his old life. There was no grieving family to thank for their worthwhile anguish, an unavoidable tragedy that helped us avoid one.
Instead, I rushed to the hospital because Tony said things didn’t look good. It was the first time my uncle couldn’t call me himself. I stood close, straining to recognize him on the bed through the bloating. I leaned over and kissed his left hand. Before I stepped back on my heels, the machines all around us alarmed. Two nurses rushed into the room, pulling wires and pushing carts. In harmony with the robotic hum, they said, “We’re sorry for your loss.” I didn’t understand.
“That’s it?” I asked.
“He’s gone.”
“Just now? Just when that alarm went off?”
“Yes.”
Next, I sat on the floor of my uncle’s living room at my grandmother’s feet. Her name is Evoun. She kept asking me if I’d seen my uncle, if I’d seen how he didn’t look anything like himself. I nodded. The room was full of people she and I knew but didn’t register. Not one of them spoke a word. When she realized that the silence meant all had been said and done, she let out a scream that propelled her to a height of grief the gravity of our love and empathy could not reach to bring her close ever again.
Then, I sat on the uncushioned wood of a church pew with my knees apart and my head between them. I felt the prickly peels of varnish on my forehead, my tears pooling directly beneath my eyelashes, people’s hands on my shoulders and back. Mary sat next to me and I was relieved she politely accepted sympathies for both of us.
I sat in the passenger seat of someone’s car as they lowered him into the ground. The two sisters he fell between, Eva and Renee, gripped one another. Renee fainted. Car after car, we drove away. We left him there, all alone, at the same time. I pushed my forehead against the cold of the glass window and cried, pounding a limp fist against the locked car door.
I still hoard old cell phones, hoping that one day I’ll be able to retrieve a lost voice message and hear him. I wish for a recording of him gruffly shout-telling me to do this or that thing I want to do any way, edging me towards a full, happy life of my own. For now, without the benefit of another, I tattooed the two words shrieked the loudest by his life–live and give. Live, really live, today and give the gift of life to someone else if there is no tomorrow.
It doesn’t matter what my uncle’s legal name was, what name was on that waitlist, what name is etched on his tombstone. That name could be any of the names on the official transplant waitlist. Each is this much more than a name, with this many more names behind him or her. The current procurement system leaves too many pounding that impenetrable door. Geographic location, race, and the type of organ needed dictate who gets access to the cure and that’s unacceptable. To start, we simply need more keys.
April is National Donate Life Month. Please take this opportunity to consider being an organ donor, if you haven’t already.
For more information, visit these sites:
http://donatelife.net/organ-donation/
https://www.unos.org/donation/facts/
http://www.organdonor.gov/index.html
Questions and discussion are invited by email to monica@mysomewheretobe.com.