Hi.
Right now we’re driving to the church and Mom is completely quiet.
After taking my vitals, Dr. Clarkington put the Minnesota specialist on speaker while we talked about the future. The specialist is a geneticist. He’s a man, middle-aged, Minnesotan, mild and forgettable as mayonnaise. Or maybe that’s what I tell myself because I want to forget him. His voice came over the speaker like one of those recordings at the airport talking about safety.
We all looked at a website together for families who have to deal with Niemann-Pick Type C. They have clubs for the little kids who get it, where they do fun things. I saw pictures of their happy, twitchy faces at a meetup in Pennsylvania, everyone wearing shirts with palm trees on them and drinking tropical drinks, some of them in wheelchairs.
I was kind of an asshole about it, because I told them that didn’t look very fun, and what would be fun would be to win the debate tournament, thanks. Then they practically put me through a spy-level interrogation to determine if I should even be allowed to continue at school.
What if slurred speech prevents you from speaking in class? The inability to form words is among the neurological risks of NPC.
I’ll write. Did you know poet Tomas Tranströmer was going to give a Nobel Prize acceptance speech in the form of playing the piano because a stroke had left him without the use of his frontal cortex?
What if you can’t remember how to get home from school?
A two-year-old can use Google Maps.
What if you start experiencing seizures?
No comment. No, wait, I’ll put a wooden spoon in my mouth.
Epilepsy?
Do I look like a person who would go anywhere near a strobe light?
Symptoms of liver failure?
Come on, that could happen to anyone. I’ll call the authorities.
And what if it happens at the debate tournament?
Aren’t there doctors in Boston?
et cetera
et cetera
They compromised by saying that everywhere I went, including school and the tournament, there had to be a first responder present. Most of the symptoms—muscles twisting and legs aching (and, according to a video I saw on the website, not being able to judge the distance of a glass of water two feet in front of me so that I’ll knock it over like a bad actor in a school play who has been instructed “knock that glass over, try to make it look like an accident”)—anyway, all of that will be gradual over the year. However, I could “seize” or “fit” at any time (as if my participation in high school society wasn’t already hard enough) and might need immediate medical assistance. At school this will be easy, since every school nurse is a first responder. Elsewhere, he monotoned, “You take a risk.”
“Like an EMT with a fluorescent vest? All the time?” I asked, laughing. I imagined getting them to guard my spot at the library with their defibrillator pads, or getting them to use the ambulance to clear the summer bed-and-breakfast traffic that happens when New Yorkers go on vacation.
“No, just someone who is trained in CPR,” the specialist said.
It’s like every time we go to the doctor there’s a new thing I have to deal with. I wondered if any of these droopy kids had to go through this, or if they were too far gone before the doctors could do anything. It was exhausting, like trying to justify my own goddamn existence.
On top of it, he reminded us: NPC is always fatal. The majority of children with NPC die before age twenty (many die before the age of ten).
(Let us pause to soak in how utterly and completely tragic all this is.)
Okay, neat. What are people who are completely screwed supposed to do? Look forlornly out the window? I’m not good at the feelingsy things. Let’s move on.
So. So, here’s where it gets interesting. The specialist said: Late onset of symptoms can lead to longer life spans. It’s extremely rare for someone my age to have it. Or, at least, he hadn’t treated any cases yet. This means that because I’m older, my body can fight it better. Even the less-specialized doctors agreed with that. Jackpot. I mean, he had already told Mom and me the life span thing at the Mayo Clinic. I just wanted Dr. Clarkington to hear it straight from the horse’s mouth.
Before we came back to the waiting room where the kids were, Mom and I hugged very tightly in the hallway. I squeezed her with all my muscles. And then, ironically enough, I threw up. Not because of NPC, I don’t think, probably because I was so nervous.
But anyway, we got the approval. We got the note. We’re back on track. Longer life span, baby! What now, huh? Whatcha got? BRING IT.
I’ve really got to pull through this thing until I get to NYU. If I’m the only one in my immediate household who believes I can recover, then I need to get away from their negativity. My parents are thinking small, Future Sam. Mom’s asking the doctor about “in-house nurse” options and prescription plans. They’re preparing for the worst. As Mr. Chomsky says, optimism yields responsibility. I’m not delusional: I know I’m sick. But I’m not going to set myself up for failure.
I’m going to ace everything, win the tournament, go to New York, and figure it out from there.
And you’ve got to help me.