by J. D. Netto
“Just like that?” I snapped my fingers.
“Just like that.” He repeated the gesture. “You assured me you were going to make it.”
“It takes as much effort to doubt as it does to believe, Paul,” Mom added. “At some point, you have to make your choice.”
“Everything will be alright.” Dad’s smile remained intact. “The fire doesn’t last forever.”
Walking into the hospital was like entering a prison. I knew I was going to be in there a while. My parents and I were led to a room with a few nurses already waiting inside. I was asked to strip and put on the turquoise gown neatly folded on top of the bed. I pulled the white curtain shut to have some privacy while changing.
But then I stopped. The scar on my chest was reflected in the mirror hanging on the wall. It held my attention for a few seconds, until I decided to look at my face—something I hadn’t done as often in the past year. The dark circles around my eyes were bluer and deeper than I remembered. I nibbled on my blueish lips and gazed at my fingertips, ready to say goodbye to the billboards that showed the world Sawyer was sick.
I slid the curtain open. My parents smiled, both sitting on two chairs lined up against the wall. A nurse was next to them, half of her face hidden behind a surgical mask. Her round hazel eyes bore into mine.
“I’m going to need you to lie down.” Her sweet voice made me think of cotton candy.
I did as she requested. Goosebumps spread across my body as my back met the cold surface of the surgical bed. She inserted the IV. I winced at the familiar feeling of the sharp metal slowly sliding into my body.
“Ready to do this?” she asked.
“Sure.” I said, even though I wanted to urge everyone to stop asking me if I was ready for this. Because the answer was no, I wasn’t.
“Alright, Paul,” Dad said with a fist in the air. “You got this.”
Mom tilted her head like people did when they felt sorry for me. I had seen that look on her face too many times.
I stared at the ceiling as they rolled me out of the room and into the hallway, counting each passing light like one counts sheep before going to sleep. I was led through the double doors and into the operating room. I suddenly became aware of the sweaty palms of my hands. The room was noticeably cooler.
“Paul,” said that cotton candy voice. I glanced at the needle she had in hand, watching as she inserted it into the tubing. “Count down from ten for me, okay?”
I nodded and started counting, “Ten, nine, eight, seven, six, fi…”
The animals painted on the walls sent a slight shiver down my body. They seemed to prance around, dancing to an annoying beeping sound. A cannula was stuck to the upper part of my left hand. A sharp pain crawled up my throat. The annoying tube was in it again. I would’ve sworn the thing was as wide as a silver dollar. Syringes pumped fluid into small tubes on both my arms. Two wider tubes filled with fluid crawled out from beneath the scar on my chest. There was also a stabbing pain underneath both my arms. More tubes—one on each side. Yes, Frankenstein had survived.
I searched the room for a familiar face, but it was empty except for me and the equipment keeping me alive. The sun waved goodbye as it set outside the window, hiding behind the mountains. I wanted to be the sun in that moment. I wanted to disappear and only return when all these wounds had healed. The heaven I had learned about sounded pretty darn nice right then.
Leaving this world meant more money for my parents; I was the kid draining most of it with medical bills. It also meant freedom from all the anxiety around Sawyer. Was he going to fail that day? Was he still beating normally? Was he giving out?
I’d welcome some relief from all the pain and torment. So would my family—even if they were reluctant to admit it. They wouldn’t have to be anxious or worried. They would finally know the outcome.
The door opened slowly. It was the nurse from before. The hazel eyes gave her away before she said a word.
“You’re awake already.” She smiled. “I thought you were going to sleep some more. Your parents went home to freshen up, but I believe they’ll be back today. You just went through a lot. You should rest.”
There it was again. The look. Her eyes scanned my body like I was some lonely puppy waiting to be adopted. I looked away, the animal drawings on the wall suddenly becoming more interesting.
She turned on the TV and walked out of the room.
There was no escaping. That was it. That was my life.
Another Death
APRIL 2008
It had happened again. Less than one year after the death of our twins. Weeping was the soundtrack of our drive back from the hospital after the procedure. A few weeks ago, the gynecologist confirmed Olivia was pregnant again. And here we were, facing the unbearable pain of another miscarriage. Hearing the doctor confirm the lack of a heartbeat made the world implode inside me.
“It shouldn’t be this difficult,” Olivia kept repeating under her breath, clinging to the seat belt as if it were a lifeline that could take her back in time. “It shouldn’t be this hard. It can’t be.”
She was always vocal about the life she wanted for us—and her words haunted me daily: a big family, a husband who worked in the mornings and came home late in the afternoons to spend time with them, a house surrounded by a white picket fence in the suburbs somewhere. The reality had become all too clear; I’d never be able to give her any of that. I was a defeated soldier on the battlefield of life, watching death after death drain our strength away.
We stopped at my parents’ to pick up Neil. Olivia stayed in the car. They didn’t ask many questions. As soon as Neil was buckled in, he started telling us about his day with Grandma while holding on to one of his dinosaurs.
“I found a worm on a tree,” he said gleefully, waving the dinosaur around.
“You did?” Olivia sniffled, turning her head toward him, eyes puffed and red.
“Yes, and then I ate chocolate cake. It was so good. I also learned the name of a new dinosaur. Plo-plo-dicus.”
“That’s great, champ,” I said, glancing at the rearview mirror. He probably meant Diplodocus but he looked too excited for me to correct him.
I reached for the radio, but Olivia grabbed my hand before I could turn it on.
“No, please. I need some peace and quiet.”
“Dad,” Neil started after a few minutes of silence.
“Yes?”
“Did Mom fall? Why is she crying?”
“Mom isn’t feeling well,” Olivia said. “But she’ll get better soon.”
“Okay,” he answered, his attention shifting to his dinosaur.
The challenge of returning home after such an event was trying to find normalcy again. Neil paraded inside the house as soon as I opened the door, darting his way toward his toy basket in the corner of the living room. “Dad, let’s play!” he insisted, spilling out his toys on the floor.
Olivia was about to walk up the stairs when Neil asked, “Mom, maybe playing will make it better?”
Olivia gave him a kiss on the forehead. “You’re perfect, and Mom would love to play with you, but she needs to rest. Dad will take care of you. We can play tomorrow, okay?”
“Okay,” Neil agreed and returned to his toys.
Olivia retreated to our bedroom. Her low sobs and whimpers carried quietly throughout the house for the rest of the day.
Dead Man Walking
JUNE 2008
“Our Love” filled my living room as I played. The tune had become an anchor for my sanity after my last visit to the doctor three days ago.
Sawyer—and my liver—were both enlarged. They had decided to gang up and put pressure on all my other organs. My right lung was on the verge of collapse. My protein levels were dangerously low. This was it. Sawyer had been wounded too much to be whole again.
> Sawyer was sending messages that he was ready to shut down, but I didn’t have the luxury to listen. I had to live for those around me.
Dr. Kupo prescribed an intravenous medication called Milrinone. The pump was placed in a fanny pack, a catheter inserted into a vein just below the bend in my elbow. I was lucky Olivia could change my dressings and manage the medication at home. Most patients had to be hospitalized.
They were going to adjust my medication and do a heart catherization in August to assess Sawyer’s damage.
Dr. Kupo suggested we try cardioverting me again; a procedure that involves inducing you into a deep sleep and delivering an electric shockwave to the heart in an attempt to correct its beating pattern.
When I first experienced the procedure, the sleeping medicine didn’t fully work. I thought my body was going to burst as the electric shock surged through my chest. It was like releasing fireworks inside a small bedroom. The second blow was even worse. I was a prisoner tied to an electric chair, robbed of every ability save one—pain.
Olivia and Neil were in the living room surrounded by action figures, cars, and building blocks. I watched them while I played, thinking about the human bomb they had with them. I was about to explode, and the carnage would hurt them the most.
Dad told me he had heard my voice in the wind after my first surgery. That’s how he knew I was going to be alright. But I was an adult and Sawyer was still sick. Maybe this was the end. I had grown up and finally arrived at the finish line.
Yes, I was confident in a beautiful and mysterious afterlife, but I was too stubborn to leave this world behind. I literally didn’t have the heart to cause my loved ones so much pain. I was a boxer, prepped and ready to fight off death itself for my family.
When Olivia struggled with doubts and I got knocked down, I was going to keep getting up and going another round. If my son was at risk of living without a father, I was going to cling to life with all I had. And if I was to depart this world, I wanted them to remember me, not as a man who was defeated by his heart, but as the man who fought wholeheartedly until the end.
The Choice
AUGUST 2008
I couldn’t breathe. Had someone put a bag over my head? Sawyer, even in declining health, could still give me painful thuds. With heavy-lidded eyes, I spotted silhouettes all around me. I tried crying for help, but my mouth was a locked chest.
Was this it?
Olivia’s face flooded my mind. I had to see her smile one more time. There was so much I still wanted to say. There was so much I wanted us to live for. Neil’s face followed. I couldn’t leave him. I had to see him grow up.
While struggling to fight against whatever had a grip on me, everything faded away into nothing. The darkness in my mind was replaced with some sort of dream.
I was in a fetal position on the ground. Women in long white garments stood around me, weeping. Their wailing was accompanied by rolling thunder. I cried for help but suddenly realized what was in front of me. How could I have not seen it? A cross was an arm’s length away. The uneven patterns of its wooden base led my gaze upward, until I felt something dripping on my shoulder. Blood.
Another drip.
I chanced a look, following its source. There was a man hanging on the cross. His arms were spread, hands nailed to the wood. One foot was on top of the other, nailed together, and on his head was a crown of thorns. The image in front of me blurred as I squinted, hoping to see the face of the man.
But I didn’t need a face. I knew who He was.
That’s when I remembered something. Scholars had affirmed those crucified like Jesus eventually died of suffocation. The weight of the victim’s torso became too much for the ribs and collarbone to withstand. The lungs were crushed. The only brief relief for the victim was to stand on the platform below their nailed feet to take a breath.
I decided to stand on my platform and breathe despite my nailed feet. I had to stick around for those around me. I couldn’t leave this world. Not yet.
Muffled voices joined the irritating, yet familiar, beeping sound. My eyes opened, landing on the diaper commercial playing on TV. Olivia was to my left, sitting on a leather chair and wrapped in a brown sweater.
“Hey, you,” I said in a croaked voice.
She jumped up, startled.
“How are you feeling?” She rushed closer and kissed my forehead.
“I’m good—better now.”
“Glad to hear.” She chuckled. “You slept for twelve hours.”
“Wait, what happened?” I asked, confused.
“You underwent the heart catherization procedure yesterday, remember? They’ve been waiting for you to wake up to let us know how the procedure went,” she said with a smile. “You’re still here, so I guess it went well.”
I almost told her what I had seen, but decided to keep it to myself. The revelation felt so powerful and private that I couldn’t share it with anyone, regardless of how much I loved them. She stroked my hair and said, “I’m going to tell them you’re awake. Let’s see what they have to say.”
She returned moments later, followed by Dr. Kupo.
“Hey there, Paul,” he said, clipboard in hand. Olivia sat on the edge of my bed. “How are you feeling?” He fixed his thick-framed glasses over his nose. His graying gelled hair glistened under the light.
“Good.” I cleared my throat. “Am I going to still be good after I hear what you have to say?”
He chuckled and flipped a page on his clipboard. “Well, the good news is your pacemaker and the amiodarone therapy have steadied your heart rhythm, buying you some more time.” His words lifted a weight from my shoulders. “But”—the weight returned—“we’re concerned about the right side of your heart. It’s literally become a balloon, and blood just swirls inside. Picture a whole bunch of cars on a roundabout driving without a clear exit. A Fontan revision should help with that.”
“Fontan,” I whispered. “The same surgery I had when I was fourteen?”
“Yes. But more advanced.”
“I should be alright after that?” I asked. Olivia’s face was shrouded in concern.
He paused. “Well, if the revision works, you should be fine for a while. If not, we’ll look at alternatives.” His lips flattened into a line as the tension thickened. “There’s no easy way for me to say this. Your heart is failing, Paul. Though I am not fond of the idea, my advice would be to start meeting with the transplant team as a final resort in case this doesn’t work.” He removed his glasses.
Not fond of the idea. Final resort. The words whirled in my head as if they had been screamed into an empty cave. I wanted to ask him what that meant, but I was scared of the answer.
Mustering up the courage, I asked, “What do you mean by final resort?” My brows pulled together. “I thought, when the time came, a transplant would solve all this.”
“I need to be honest with you,” he said, face deadpan. “There’s a strong chance a transplant will kill you at this point.” The certainty in his voice confirmed my fear. “Your liver is too damaged. It’s been pushed too far and is barely breaking down any protein. The Fontan revision is your best option. And I recommend you start wearing your oxygen tubing full-time.”
“And what happens after the Fontan?” I asked.
“One step at a time. But the choice is ultimately yours.”
Olivia’s eyes were two dark chasms.
“I’ll have them bring you some food,” Dr. Kupo said amidst the lingering silence. “I know you must be hungry. You slept through breakfast.”
“Thank you.” I stared into the distance.
I got a brand-new oxygen concentrator after I was sent home. I called it R2D2. It was bulky and white with four wheels that allowed me to drag it around the house like a leashed dog. It beeped like a microwave whenever I turned it on. R2D2 was so state-of-the-art it
even had room for a humidifier bottle. Seeing my oxygen tube connected to it reminded me I had no way out of this. The transplant—the one thing I thought would save my life—was also the blade that could take it all away.
A few days later, I was struck with the news that my health insurance no longer covered my procedures due to major healthcare changes happening in the United States. I applied for a new government program offering those with pre-existing conditions some relief. The good news was I got even better insurance. The bad news was that I had to leave Dr. Kupo’s care.
I was referred a new congenital cardiologist named Angie Brown. Olivia told me she was the doctor at Primary Children’s Hospital—the same hospital where I had my Fontan when I was fourteen. When I asked why I was being referred to a doctor there, I was told most people in my condition didn’t survive past childhood. I was one of the few.
On a Monday morning, while working on some music for the new album, I decided to call Dr. Brown with the number provided by my new insurance. To no surprise, I was sent to voicemail. I put my phone on the music rack and lost myself in an improv until my phone vibrated a few minutes later. The caller ID displayed an unknown number.
“This is Dr. Brown. I just got your voicemail.” The voice was mellow and calm.
Sawyer pounded at her words. “Thank you for calling me back, Doctor. I would’ve expected one of your assistants to reach out so I could schedule an appointment.”
“I wanted to personally talk to you. It’s not exactly protocol to be personal, but I enjoy your music and your case is fascinating.” I glanced down at the piano while she spoke, catching my reflection on the black glossy surface. “How are you feeling?”
“I’ll be honest.” I sighed. “I am really hoping you can help me.”
