by Lara Avery
(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 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.
THE REVENGE OF COOPER LIND
Our Lady of Perpetual Help is in Bradford, just a thirty-minute drive from Hanover, in one of the flatter parts of the Upper Valley. It’s angular and beautiful and white, like most of its parishioners. There, on this very night, Harry declared himself a soldier for Christ for the rest of his life, which makes a lot of sense for a thirteen-year-old to decide (not).
Especially a thirteen-year-old who chose Saint James (aka Santiago) as his patron saint because Santiago is the main character from Rainbow Six, a tactical shooter game. So Christlike.
Little Taylor Lind took her place next to him on the velvet kneeling-thing for the sacraments ceremony, her flaxen strands bundled into a delicate ponytail next to Harrison’s curls, side by side, on the fringes near the shelf full of Virgin Mary candles, just like her brother, Cooper, and me five years ago. As I watched Father Frank touch the ceremonial cheeks of all the tween St. Cecilias and St. Patricks, confirming their Catholichood, Mom reached for my hand and squeezed.
It made me think of my own confirmation—
I had worn one of Mom’s old dresses from when she was a teen in the ’90s, lime green, short, collared, and patterned with daisies. My hair was peeking out of several randomly placed metal clips. My old glasses sat low on my nose, the ones with the rectangular frames that were too small for my round face and made my eyeballs bulge.
Cooper had chosen St. Anthony of Padua because it was the first name of a list of suggested patron saints.
I had chosen St. Joan of Arc because duh.
I was beginning to wonder which saints Bette and Davy would pick when it became their turn, and suddenly the hymn version of “Bless Us, O Lord” sounded from the enormous pipe organ from the corner, and I could see my dad standing in the front row with all the other sponsors, a blazer over his City of Lebanon employee shirt, and all the what-ifs from the doctors began to float in my head, like what if something goes wrong before Bette and Davy even get to this point, and my throat released a tension I didn’t know it had, and the saltwater pooled in my glasses again. I had to bow my head to keep the crying quiet, but the tears just kept coming, so I excused myself to the bathroom, and there in the lobby, speak of the devil and St. Anthony of Padua, was Coop.
Cooper Lind (noun, person): was once practically my brother, but is now more like an estranged brother—no, more like just a regular neighbor. Adonis with a perpetual windburn. Find him on the other side of our mountain, in a cloud of weed smoke, or in bed with any given female age fifteen to nineteen. Coop is the only other pe
rson from Strafford who worked the system and goes to Hanover High, but only because they wanted him to play baseball.
I gave him a cursory nod and brushed past him to the bathroom, got rid of the last gut heaves, and washed my face.
When we first went to Hanover, Coop and I carpooled together, clean and prepared and nervous out of our goddamn minds, sitting side by side in his mom’s car, and I don’t know. Something happened, gradually, and all at once. Maybe we had nothing in common besides the imaginary games we used to make up about magic. Maybe we grew apart because Coop pushed out long, muscular legs from where his chubby Band-Aid-covered knees used to be, and broad shoulders came out of his Batman shirt, and cheekbones poked out of his cheeks, and none of that growing ever happened to me. I was too weird and ugly to be around him, a little scrub bush to his mighty oak. Coop became a star pitcher and made friends with the popular kids; I became a debater and made friends with no one. It was meant to be, probably. I used to read fantasy books during his Little League games.
His freshman year, Coop made All-State after pitching four no-hitters. Then, shortly before the State championship, he was kicked off Hanover’s varsity team for smoking weed. I’m pretty sure I’m the only person who knows that. The day it happened, I found him on the border between our two properties, playing a video game on his little Nintendo thing, still wearing his Hanover cap. I could tell he’d been crying.
“What happened?” I asked.
He pulled out the disciplinary letter from his pocket.
“Well,” I said. “That’s what you get,” like I had told him when he broke his leg after jumping off a high wall when he was seven. I laughed as I read the letter, as if we would forget about it the next day and we would play again.
But when I looked for his eyes to say, Hey, just joking, no big deal, I’m really sorry, I remember I couldn’t find them. His eyes were there, but it was like something had sunk behind his pupils.
I even said aloud, “Hey, just kidding, you’ll be fine…”
But he had already started to turn away. I remember thinking, We aren’t good enough friends to joke like that anymore, I guess.
“This is yours!” I called out, still holding the letter. “You probably need to give it to your parents.”
He turned back and snatched it, then walked away to the other side of the mountain and didn’t answer when I called him, so I stopped calling.
At school, the general rumor was that he quit, and I kept it that way. Our silence grew and grew, he moved desks in the one class we had together, and pretty soon he got his Chevy Blazer and I got Dad’s truck and we didn’t have to carpool anymore.
When I came back out of the church bathroom, I did not expect to find Coop waiting for me.
“Are you okay?” he asked, and I almost wasn’t sure he was talking to me. His eyes were on his phone.
“Yeah! Totally.”
I kept walking, but he didn’t return to the sanctuary. I threw a quick “Thanks!” over my shoulder.
“Hey, wait,” Coop called. “I’m gonna get some air. You wanna come?”
“Oh, um…”
I froze and looked at him. Coop looked out of place at church—I mean, so did I, but it’s different. At least I wore my dress (that really just looks like a huge shirt)—he was wearing a tank top emblazoned with THAT GOOD GOOD (who knows what “that good good” even is?) revealing his Mr. Clean arms, and it appeared he hadn’t brushed or cut his shoulder-length honey hair in a while. But it was the same Cooper whose house I used to go to for lunch after we played all day in the summertime, swimming in our underwear at the Potholes, fighting over the last Cherry Vanilla Dr Pepper in the Strafford general store.
“We’ve got about”—Coop looked at his phone—“about twenty minutes.”
“Cool.”
I followed him outside into the spring night, where we landed in the center of a circle of benches out front, in the shadow of OLPH’s enormous white cross. Coop pulled a spliff out of his pocket.
“In the name of the Father, Son, and Holy Spirit…” I began.
“Amen,” Coop finished, and sparked the tip, and we laughed a little.
We stood in silence while he smoked.
I didn’t really know what to say.
“So how the hell are you?” he asked after an exhale.
“Uh… fine.”
“Want some?” he asked, leaning the spliff in my direction.
“No!”
“Okay, fine, I don’t know, maybe you started to relax a little, I don’t know…” Coop said, laughing from that place between his chest and his belly like he does when he knows no one else thinks his joke is funny.
“I don’t need weed to relax,” I told him, straight out of a PSA, but also, straight out of my heart.
“What does Sammie McCoy do to relax?” he asked.
“I watch The West Wing. I also like to clean my room. Sometimes I’ll—”
“Why were you crying?” he interrupted.
“First of all, don’t interrupt me. You, of all people, should know that.”
“What is that supposed to me—” he started, then caught himself and shut the hell up.
“As for your question, I was crying because…” I thought of how I had seen him in the halls earlier today, at the bottom of a human pyramid made of sophomore girls. “You don’t want to know.”
“Yes, I do.”
“Okay…” I tried to read his face. “But I can’t tell you.”
“Why?”
“Because for all you care I’m, I don’t know, getting my period or something.”
Coop snorted. Even in the shadow of floodlights, I could tell he was blushing.
This is why I don’t make friends easily. Small talk, among many other things, makes me want to punch a hole in the wall. So when I do talk, I want to make it count. I don’t know if after four years, Coop actually wanted to know why I was crying, or just the small-talk version. But I wasn’t going to do the small-talk version. Not today.
“Now I made it awkward,” I said.
“I live with women. I know what periods are like.”
“I’m not getting my period.”
“You don’t have to tell me.”
“I don’t have to, no.”
“But I asked.”
“Why?” I asked him.
“Because something’s going on.”
“How can you tell?”
Coop shrugged and smiled.
Maybe he could tell because he’d seen me pee my pants in this very church, when the homily went too long. Maybe because I’d seen him pee his pants once, in our car on the way back home from Water Country.
Or perhaps it was that I had come from the doctor’s office, where someone had just pressed on every part of me so hard that I could feel her cold wedding ring against my skin, and I had to tell her that yes, it does hurt when you press there, and there, and there. Dr. Clarkington touched my neck and my spine and my butt and my boobs and my belly button and the soft part between my hip bones, and told me how each part would dissolve or melt or harden, like Play-Doh left out too long, and she could already see my body changing.
I said, “Let’s sit. Can we sit?”
“Of course we can sit.”
We sat down, our backs against the cross.
I told him about today.
I told him about two months ago, when I found out I couldn’t turn my eyeballs upward and went to the doctor for what we thought was some sort of migraine. I told him about six weeks of medical tests, reading AP Euro while waiting on the freezing tarmac because the Mayo Clinic has to be all the way in Minnesota, and telling Maddie I had to miss debate practice because my great-aunt was dying, because it seemed closer to the truth: My great-aunt did die and she did have what I have, which is another reason Maddie can’t know that I’m sick, because if she thinks I’m going to die it will throw her off, and she’ll start telling me I’m doing good work even when I’m not, and she’s one of the only p
eople whose opinion about debate I can trust. I told him that watching Harrison get confirmed brought back all these memories and, in turn, curiosity and fear about the future, which looked narrow and hard but not impossible, and how now I feel more determined than ever to get what I want and get it now.
Coop’s eyes were blazing red by the time I was finished. To clarify: not from getting emotional, but from getting high, I’m pretty sure.
“Shit, man,” he said. To his credit, he hadn’t interrupted once.
“So, yeah,” I said. I felt like I had just thrown up. I may have been sweating. But I was empty and calm.
Coop nodded for a second, forming words. “Sammie, I am so sorry.”
He stared at the ground. His phone lit up in his pocket and he pulled it out. I caught the name “Hot Katie” on the screen. He ignored it. But it was already enough of a reminder of who we were now. He would not have ignored the call if I wasn’t here. We would not be standing here if he hadn’t wanted to smoke weed. This was not how his night was supposed to go, or mine. We were just space rocks bouncing off each other temporarily in this strange little Upper Valley void, but our trajectories were still separate. We were not friends.
“It’s cool.” I wanted him to go then. I wanted Coop to take with him everything I had dumped on him so I would never have to talk about it again. Hot Katie lit up his phone a second time.
I pointed to his pocket. “You can take that.”
“’K,” Cooper said, unlocking the screen. “Be right back,” he added, and flicked the butt of his joint forward so I had to jump to avoid it.
“Sorry!” he said, darting back, phone to his ear. He ground the tip with his Adidas.
While he cooed to Hot Katie, I ducked inside for the conclusion of the service, and when we came back out, Cooper was gone. Good to see him, though. Good ol’ Coop.
Oh, fuck. I really hope he doesn’t tell anyone about the disease thing.
He won’t.
Oh well.
He won’t.
AFFIRMATIVE CASE FOR ATTENDING ROSS NERVIG’S PARTY FRIDAY NIGHT: AN EXPLORATION INTO TEEN SOCIAL HABITS UNDER THE GUISE OF DEBATE PREPARATION