For Max Novak, a lifetime of illness and surgeries wasn’t reconciled by a single choice, but because he had a choice at all.
Hospitals are strange places. I should know; I’ve spent a lot of my life in one. They are places where you can be part of an amazing, bumpy ride, but you’re never really in the driver’s seat. That was me, from the moment I was born right up until a year ago, when I had my most recent surgical procedure. I was always just along for the ride. And let me be clear, the ride was not scenic.
Every trip to the hospital I felt helpless and weak, as if I had no choice in the matter. Fifteen surgical procedures where I had no choice or say or voice. Except once. That one time when I was 10 years old. That was a turning point. When “choice” became another word for “nothing left to lose,” to paraphrase Janis Joplin.
I was born with a birth defect called TEF. Or EA/TEF to be more specific. It’s difficult for me, even now, to remember which three multi-syllabic words that stands for, even though my mom can rattle if off her tongue so easily that I know she’ll never be able to forget it. And you probably don’t need to know it either. In a nutshell, EA/TEF means I was born with my esophagus in two parts. My “food tube” had a gap in it, which meant that I couldn’t eat by mouth and had to be fed through a tube for months. All that time, I lived in the intensive care unit. When I reached a certain weight and my heart bean to beat normally, a surgeon put me under anesthesia and spent seven hours pulling and stitching my insides together.
For years I had horrible emergencies where we’d take frightening rides to Children’s Hospital, and I would end up in the operating room. No one ever asked me whether or not I wanted to play this game, but since staying alive was my best alternative, I had to go along for the ride.
As I got older and sturdier, everyone calmed down. But still, doctors kept talking about cell changes and scar tissue and so now, every four years I have to get an absurdly small camera stuck down my esophagus to check that everything is all right.
It wasn’t unusual for me to get very sick from the anesthesia. And I always experienced a sense of disorientation and a loss of control. But what made every one of these procedures worse was what I called the “yucky medicine.” That was the Versed, as I later learned. It’s a drug in the Valium family that patients take to help calm them down before surgery, easing them into sleep. It’s used on pediatric patients to help the kids separate from their parents. My surgeon used to joke that he wanted it in mist form so he could spray it in the parents’ faces just to calm them down. The taste of Versed is unbearably bitter. It’s not meant to land on the tongue but rather in the vein. But kids don’t like to be stuck. So the other alternative is for kids to suck in bubble-gum flavored gas through a mask. I’ve fought like a maniac against those horrible things too many times. But one day, when I was 10 years old, things began to change. Choice became the operative word. And my world began to change because of it.
It was an August morning, a few weeks before school was set to start. Precisely on schedule, my parents and I entered Children’s Hospital Oakland through the wide automatic door next to the parking lot. To me, that’s still the worst door in the world because it invariably leads to frustration, yucky medicine, sterile smells, and pain.
I hadn’t been scoped or put under anesthesia for months. So my parents, and a nurse, had debriefed and re-reminded me what would happen, step-by-step. The long elevator trip, the tedious registration process, it was all vaguely familiar yet hauntingly repulsive. Was it better to remember everything or nothing at all? In which state did I have more control? Or, at least, the illusion of control?
As with every other operation, I was NPO, which is Latin for nothing by mouth. I was starving and thirsty, but nothing was more horrifying than the knowledge that there was no turning back. Hey, I didn’t have any say in the matter. Maybe we missed a cancellation notice in the mail, and it wasn’t too late to grab a bite to eat and go home.
When it was our turn, we were ushered into a little room where people began to crowd in behind us. A couple of nurses, my doctor, and the anesthesiologist. Truthfully? I was never afraid that the doctor was going to slip up with a sharp instrument and cause me great harm. These very people had saved my life when I was a premature newborn, only hours old.
What I was afraid of was … the yucky medicine. That freaky, yucky medicine. The Versed. The Versed that represented every moment of my medical life where things sucked and spun out of control. It was the repeated punishment for a crime I never committed. So simple: a taste on the tongue. A few moments of lucidity. Then hardly any memory at all. (Antony? Romeo? Anyone?) But I hated it. Loathed it. Railed against it and fantasized about busting out.
But this time it was different. I had turned 10. It must have been a magical number, hitting those double digits. The choice was now mine. I got to pick my poison. The anesthesiologist who’d known me since I was born had a plan. All I had to do was listen.
I could rely on the gas mask to help put me to sleep. All I had to do was keep it on my face and suck in the flavored air until I dropped off. Or, I could let him stick my hand with a small needle full of Novocaine that would numb the tissue around it. Then, the doctor would be able to insert the intravenous catheter deeper into my hand. All alone, that is a painful option and one that adults can easily handle, but most kids can’t tolerate.
“IV needles hurt,” my Mom conceded. “Take the smaller needle, which won’t be much more than a bee sting.” That didn’t seem like much of a choice to me, though.
I’d never been stung by a bee before, which raises the irony of all the normal-yet-painful things most kids go through that I’ve been spared. The anesthesiologist agreed and waited for me to make my choice. Six adults and me, crowded into a small room. Me, dressed in surgical pajamas as if gowned for my own funeral. I was only 10, for Chrissake, yet I was also being offered the chance of my lifetime: choose how I wanted to go unconscious. Choose how I wanted to lose control. Choose how I was going to let people mess with my private space. Choose.
I decided to go for what was behind Curtain One. With my mom wrapped tightly around me on the bed and my dad squeezing my foot closest to him, I rested my left hand in the big mitt of the anesthesiologist. He tapped, rubbed, and then ever so lightly stuck the tiniest of needles into my hand. My mom kept telling me to breathe, while she squeezed my right hand hard as if to distract me. I felt a sharp, tingling pain that lasted a lot longer than everyone had said it would. The doctor told me what a great job I was doing.
It seemed seconds later, when I had no sensation on the top of my hand, that the nasty IV needle went in, full bore. It was a strange needle with a green plastic end on it, which the doctor left under my skin. To the remaining green end, he hooked up an intravenous tube. After taping the device to my hand so that I wouldn’t have to see it penetrate my skin, the doctor invited me to slide off the table and walk to the operating room with him. I grabbed my IV pole and pushed through the door. The hallway seemed endless. I felt as though I was walking to my own doom. But for the first time in all the many, many times I’d had surgery, I felt a curious sense of elation. It’s not that the Versed was being pumped into my veins, at least not yet. It was that I had selected an option that worked for me.
My parents dragged all our bags behind us as my doctor, a resident, and some nurses followed. But up front, it was just me, and the man who would put me to sleep and wake me up. I got up on the table with much trepidation. Slowly but surely I closed my eyes and went to sleep. Around an hour later, although it felt like an instant, I woke up. I was bleary eyed, slightly nauseous, and groggy.
But that time, no one had to hold me down. No one had to sing my favorite song to lull me to sleep. I didn’t care if the gas tasted like bubble gum or pepperoni pizza because I wasn’t going to inhale it. Within seconds I was asleep. And all it took was some trust and a tough decision on my part to get to that point.
I’ve had the procedure one more time since that watershed moment. And I went for the needle again. It makes me shudder just to think about it. It is never an entirely easy moment or one filled with joy or jubilation. But what’s best is that because the doctors trusted me, I trusted myself to make the right call.
—Photo Pink Sherbet Photography/Flickr