Draconian Does Not Mean Fun
About a year and a half before I went swimming in Beaver Lake, when I was eleven, my parents had taken me to meet with a new doctor at Seattle Children’s Hospital. Another doctor’s appointment, woo-hoo. But my parents were very excited to hear about a new surgery this guy, Dr. Hopper, was doing.
Starting before I was born, my face didn’t form properly, so doctors had been trying to help me function for my entire life. I could hardly breathe. My nose didn’t connect to my airway, and because my jaw was so small, my tongue filled my mouth. There were problems with most of my senses. I couldn’t smell or breathe because extra bones were behind my nose, blocking it. I couldn’t eat because my jaw was small and out of alignment. I could barely hear because I didn’t have ears to capture the sound and deliver it to my brain. I didn’t have bottom eyelids, which meant I couldn’t close my eyes fully, and my vision wasn’t great, although that was just run-of-the-mill bad luck. Bonus! The only good news on my five senses report card was that I could touch—everything about me from the neck down worked just fine. And my brain was perfectly fine too, maybe even a little bit awesome, if I do say so myself, which would help me deal with all the other problems.
I grew up knowing that I was born with a syndrome called Treacher Collins and that it made me different, but I didn’t feel different. I felt like myself, the only self I’d ever known. Other kids weren’t fed through a tube in their stomach for the first year and a half of their lives. Other kids didn’t wear hearing aids. Other kids didn’t have a hole in their neck to help them to breathe. Other kids didn’t grow up having doctors’ appointments instead of soccer practice and surgeries instead of vacations. Other kids didn’t have a nurse with them at school. Other kids could shower, swim, play roughly, go out in the rain. But the way I see it, a certain number of kids are going to be born with issues like mine every year. One in forty thousand to one in seventy thousand, if you ask the people who count up these things. That’s not very many, but that’s just kids with Treacher Collins. Tens of thousands of kids are born with facial differences in North America every year. Plenty more kids have different problems to deal with. I’m definitely not going to do the math on that, but I know that if you add all those kids together, I’m just one in a huge crowd. If you look at it that way, I’m pretty normal after all.
For our first appointment, Nathaniel’s dad, Russel, and I, Nathaniel’s mom, sat down in chairs in front of Dr. Hopper’s desk. Nathaniel picked a bench off to the side of the room. Dr. Hopper was pioneering a new surgery. He hoped to dramatically change Nathaniel’s ability to breathe, at last setting him free from the tubes and pumps and antibiotics that had entangled him for his whole life.
The very first thing Dr. Hopper said to the three of us was, “You’ll hate what I’m going to tell you. It’s draconian.” I explained to Nathaniel that draconian meant extremely harsh. He registered that, then went back to drawing on a piece of paper the nurse had given him.
Dr. Hopper went on to explain that if we agreed to the surgery, he and his team would try to change the structure of Nathaniel’s entire face. It would take several preparatory surgeries, and then the biggest one would be a whopper, not just because of the eleven-hour procedure itself, but because of what came afterward. The follow-up treatment was not very different from what you might invent to torture your worst enemy. (Sure, when you torture your worst enemy, the end goal usually isn’t to give the guy a chance to breathe through his nose and without the help of a trach, but otherwise this was exactly the same.) For now, I’ll just say that it involved four months of wearing a heavy cage around his head, attached by screws.
In the end, if the surgery was successful, it would change Nathaniel’s life. He would still look like himself, the doctor promised us, but for the first time since he was six weeks old, he wouldn’t need a breathing tube. He would be able to take a shower, and yes, he’d be allowed to swim.
Dr. Hopper said, “The entire process, including six surgeries, will take a year to a year and a half, but it might work.” Nathaniel would only be the third child to have the procedure. It was as if the doctors, amongst themselves, had said, “If we can fix Nathaniel Newman, we can fix anyone.”
The description of the treatment was not a pleasant thing for a parent to hear. I wondered how it was sounding to the eleven-year-old would-be patient. “You’re doing this because we said so” wouldn’t fly in this case. It was torture! He couldn’t wake up surprised to find his head in a vise. We had to make sure he knew what he was getting himself into, and he had to be on board. That was why we’d brought Nathaniel with us to Dr. Hopper’s office to hear everything he had to say.
When the doctor finished describing this terrible but potentially miraculous plan, his dad and I looked at our son to see his reaction. Nathaniel was in the corner of the room. He had a sheet of white paper taped to his chest. He’d colored the paper red, and there were big holes stabbed through it, as if he’d been riddled with bullets.
“What are you doing?” we asked him.
I think we both expected him to say: “This is what you want to do to me. You’re going to destroy me.”
Instead, he cheerfully said, “You’re not going to believe it. We’ve been overrun by monkeys, and they all have muskets.”
Nathaniel had always found his way through the pain and suffering, and this was exactly how he did it. Monkeys and muskets one day, a team of superheroes another—these characters and their comic book battles distracted him from bad news, boredom, and pain.
Russel pressed him. “Nathaniel, this is serious. It’s going to suck. Did you hear the details? Do you have any questions? What do you think?”
Nathaniel looked up. He asked, “Do I get to miss school?”
Russel said, “Yes, you will miss three months of school.”
Nathaniel gave a double thumbs-up. “Awesome. Let’s do it.”
I was bored. To be honest, I’m always bored when doctors are talking, but my parents make me turn off my iPad when there’s “stuff I need to hear.” So I had asked a nurse for a marker. The one she gave me happened to be red. While I “listened,” I drew a bullet hole on a piece of paper and taped it to myself. Did it mean I had a death wish? No! Occasionally, I draw laser beams going through people. This doesn’t mean I’m violent or insane. It just means I like the way I draw laser beams.&nb...