I vaguely remember this quote from one of my favorite theorists, Noam Chomsky—something about optimism as a strategy rather than just a feeling. If you don’t believe the future is going to be better, then you won’t take action to make it better. It sounds cheesy, but there’s another word for cheesy: It’s called sincerity.
And besides, Maddie already used her birthday money to buy us both National Debate Tournament pantsuits in corresponding colors, navy for me, mauve for her, and they are bangin’. (I will pay her back when I’ve sold some of my Plato to any stoned-looking Dartmouth freshmen who I can convince that it’s necessary for Philosophy 101.)
We also got a write-up in the school newspaper. The newspaper makes it official. What are they gonna do, issue a correction that Sammie McCoy will no longer be competing and instead will be replaced by Alex Conway?
Yes, that is exactly what they’ll do.
Oh god, I want to put my fist through a wall.
East Coast Debate, the premier blog and newsboard for East Coast high school debate, called Maddie and me “the team to beat.” That’s Maddie and ME, not Maddie and Conway.
Alex Conway didn’t even start doing policy until last year! Little bitch was doing Model UN as Denmark.
I told you I’m competitive.
Oh my god, the nurse just called my name. Bye.
(Harrison, I love you, but if you take my laptop and read any of this, I will tell Mom and Dad that you wake up at two a.m. every night and play Minecraft.)
NOT TOO SICK, OR HOW TO AVOID BEING ON A WEBSITE IN A TROPICAL SHIRT
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 Transtr?mer 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).