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Spinal muscular atrophy. Fiction.
People with disabilities. Fiction.
High schools. Fiction.
Schools. Fiction.
Nursing students. Fiction.
Friendship. Fiction.
Moving, Household. Fiction.
Because sophomore Harris has spinal muscular atrophy (SMA), he's completely reliant on his parents, nurses, and routines. When his family moves across the country, he vows to be known as more than a body in a wheelchair. That's not easy with 400 pounds of metal strapped to his ass! At school, he requires a nurse for everything from assisting him in the bathroom to taking notes in class. Partnered with mysterious classmate Nory Fisher in physics, Harris harbors hopes she'll be his first-ever girlfriend. But when Miranda, a nursing student with a history of bad choices, comes to assist Harris, he falls for her, too. While forging relationships with Nory and Miranda, he learns about their invisible challenges, that spontaneity is fun, and, with a little creativity, the concept of can't turns to can. Debut author Hayden, who, like Harris, has SMA, writes with humor and compassion that instructs without lecturing. His funny, sarcastic, and smart narrator easily reminds the reader that people with disabilities have amazing abilities and, most important, are people first.
Kirkus ReviewsA teen with spinal muscular atrophy navigates a new school and a new crush.Fifteen-year-old Harris Jacobus is determined that his family's move from California to New Jersey will be a fresh start. When he was growing up, frequent hospitalizations and wheelchair-inaccessible hangouts made it difficult to make friends. But now he vows to experience being a typical teenager, which includes finding a girlfriend, someone like the enigmatic Nory Fischer, who's both beautiful and refreshingly chill about his disability. But how can he get to know someone who won't reveal her favorite color, which he considers a crucial requirement for determining compatibility? Fortunately, Miranda, the hot, outgoing aide who accompanies Harris at school, is happy to play matchmaker. But soon, Harris finds himself falling for Miranda-and her unprofessional, impulsive influence-in ways that could backfire spectacularly. Readers will root for Harris even while wincing at his reckless decisions; Hayden, who has SMA himself, vividly captures Harris' desire to belong and the pressure to transcend disability stereotypes. Melding wry wit, awkwardness, and introspection, Harris' frank narration keeps the pages turning as he grapples with the uncomfortable, conflicting feelings of his romantic dilemma. The ending is a delightful pop of realism. Harris' family is wonderfully supportive though occasionally realistically strained. Details of life with SMA, such as breathing treatments and feeding routines, are informative. Most characters default to White; Nory is Mexican American.A witty, candid take on love, friendship, belonging, and disability. (Fiction. 14-18)
Publishers Weekly (Fri Oct 06 00:00:00 CDT 2023)Fifteen-year-old Harris, who has spinal muscular atrophy, seeks to reinvent himself while navigating first love in Hayden’s sincere debut. After spending most of his childhood in and out of hospitals, Harris, who uses a wheelchair, is sure his family’s move from California to New Jersey is the perfect opportunity to “start living a real teenage life.” When he meets friendly Zander on the first day of school, Harris asks his go-to ice breaker—“What’s your favorite color?”—and learns that it’s yellow, which he feels signals an auspicious start to their budding friendship. Asking this question helps him avoid people he believes he’s incompatible with—his favorite color is blue, so he doesn’t gel well with greens and purples, since they’re too similar—but he’s stumped about what to do when he meets beautiful, enigmatic classmate Nory, who won’t tell him her favorite hue. When his impetuous new aide Miranda, a nursing student, plays matchmaker, her sometimes emotionally risky suggestions, and Harris’s growing feelings for both her and Nory, complicate matters. Via Harris’s wry first-person narration, Hayden, who also has SMA, explores themes of friendship and finding oneself with good humor and authority. Most characters cue as white. Ages 14–up.
ALA Booklist (Tue Nov 01 00:00:00 CDT 2022)
Kirkus Reviews
Publishers Weekly (Fri Oct 06 00:00:00 CDT 2023)
The day before I moved to New Jersey, I told my only friend that I was okay with never seeing him again. Friend is a pretty generous word to describe us, but I wanted to feel like I was leaving something behind.
I'd always had a knack for burning bridges. This, I believed, was a trait I inherited from my mom, who knows how to get on with life.
But lots of people come and go with little regard for the people they're leaving. My nurses almost never look back. And I can't let that bother me, because (a) most of them don't think two thoughts about me in the first place and (b) I need to keep the revolving door turning to avoid a lapse in my care.
That's not to say my parents aren't capable of taking care of me; I wouldn't have been alive and starting my sophomore year of high school without them. But they can't do it every second of every day, so we hire nurses who are reliable enough to attend school with me and make sure I don't die on their watch.
On the first day in our new house, I sat watching a preseason football game with my brother, Ollie, who was wearing a sweatshirt from the University of Virginia--his future college and the lacrosse team he'd be playing for the following year. He was sitting next to a stack of boxes on the couch we'd dragged across the country.
Our parents walked in, each looking more exhausted than the other. Mom's hands were placed firmly on her hips, which actually wasn't a sign of her being mad. She was about to ask us a question or tell us to do something.
"We're ordering pizza for dinner, okay?" she said. "I'm tired, and there's nothing in the house to cook anyway."
"I hate pizza," I said. "It's gross."
"Too bad, Harris. I'm not running to the grocery store at ten o'clock just to buy you chicken nuggets. You can deal with pizza for one night." She walked away, leaving no opportunity for a rebuttal. To argue with my mom, I had to be faster.
"Dude, we're in New Jersey. Some of the best pizza in the country is right here," Ollie told me.
I ignored him.
Dad lingered behind. "Ollie, can you get up and help a little? Pick up those boxes and bring them into your room?"
"Why didn't the movers unpack everything?"
"It doesn't matter. I asked you to do something."
Ollie dragged his body off the couch, picked up two boxes, and stomped down the hall toward our connecting bedrooms. Dad followed with the rest of the boxes.
I sat alone in an unfamiliar place.
Our house back in San Diego hadn't been big enough for my family, the several nurses who are always coming and going--not to mention the four hundred pounds of metal strapped to my ass. Someone always seemed to be in the way.
The new place seemed pretty good so far. Ollie and I had our own mini wing on the main level. Next to our bedrooms was a huge bathroom with a roll-in shower large enough for me to do donuts in with my wheelchair. Trust me, I'd tried.
You wouldn't believe how difficult it is for real-estate agents to understand what wheelchair accessible means. My parents probably spent more time explaining that than driving cross-country. Like, no, the house can't have stairs.
The kitchen filled up with the sounds of my parents arguing and ceramic plates clanking, until it was decided we'd use paper instead. Tensions between everyone were higher than usual. Turned out moving was pretty stressful.
I pulled up to my end of the table, which we'd brought from back home. Thank God for something familiar. My mom picked up the slice of pizza in front of me and shoved it into my mouth. My disability makes it difficult for me to lift my arms and feed myself. Even small things like a piece of cereal or a plastic spoon pose a challenge. I used to have the muscles to eat independently, but over time I've lost them.
But to be honest, having someone feed you is pretty cool. Despite the occasional mess in my lap from people dropping food, I usually feel like a king being fed by servants. Except those servants are my parents, my brother, or a nurse.
"Are you excited to start at your new schools?" Mom asked.
"We're not five years old," Ollie responded. "We're in high school. No one's excited."
I swallowed my first bite of pizza. (I'm a very slow eater.) "I'm pretty excited. New people means no one knows me. I can reinvent myself. Maybe they won't notice my wheelchair."
"They're strangers, not blind," Ollie said.
"Either way, I'm glad we left California. I never want to think about that place again."
"Hey, don't be like that," Dad said.
"Be like what?" I asked. "I was miserable there. I had no friends, it was always hot, and it's not like I could go to the beach. Besides, I had at most three good nurses in the last fifteen years."
"What about you, Ollie?" Mom asked, clearly giving up on me. "Your new lacrosse team is way better than the one in San Diego."
"I don't know. Coach introduced me to some of the guys on the team during my tour yesterday. They seemed like jerks."
"Maybe they think you're a jerk," I added.
"Shut up."
"Guys, stop," our mom ordered. "What makes you think they're jerks?"
Ollie shrugged. "None of them would talk to me."
"Why not?"
"Probably because they know I'm better than them. They're pissed off I'm on the team."
"Well, the season doesn't start for a few months. You have time to make friends."
"I don't need to be friends with them. I'm not there to make friends. I'm there to win a championship and then leave for Virginia."
While my brother vented about whether he needed friends to play a team sport, Mom pivoted back to me. "I got a call from the nursing agency here. They have a few people who are interested in going to school with you, Harris."
"Are they young?" I asked.
"I told them you prefer younger nurses. We'll see."
"I prefer young and beautiful, but I'll settle for young."
"You'll settle for what they send," my dad said.
"Yeah, why do they have to be young?" Ollie asked. "They're there to take care of you. You don't have to date them."
Mom raised a cup of water to my mouth. I took a sip from the straw and then another bite of pizza.
"Harris needs a contemporary with him," Mom said. "How would you feel if an old fuck followed you around school all day?"
Ollie shrugged. "Honestly, I wouldn't care." Then he secretly flipped me the finger from across the table.
Our dad rejoined the conversation. "Clare, don't let Harris be too picky. Otherwise you'll end up at school with him every day."
"I don't mind. Harris and I have a great time together, and either way, I'm going with him for the first few days."
The discussion ended with no counterarguments. Of course, it wasn't ideal for my mom to be with me at school, but it wasn't the worst. She was pretty cool for a mom, and not having to worry about a new person following me in a new school was comforting.
After a few bites of New Jersey pizza, I didn't see what all the fuss was about. If that claim to fame was crap, what were the odds Jersey's nurses would be any better?
Excerpted from The First Thing about You by Chaz Hayden
All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
A high school student with spinal muscular atrophy is determined to reinvent himself in a hilarious and poignant debut from an exciting new voice.
When fifteen-year-old Harris moves with his family from California (home of beautiful-but-inaccessible beaches) to New Jersey (home of some much-hyped pizza and bagels), he’s determined to be known as more than just the kid in the powered wheelchair. Armed with his favorite getting-to-know-you question (“What’s your favorite color?”), he’ll weed out the incompatible people—the greens and the purples, people who are too close to his own blue to make for good friends—and surround himself with outgoing yellows, adventurous oranges, and even thrilling reds. But first things first: he needs to find a new nurse, stat, so that his mom doesn’t have to keep accompanying him to school.
Enter Miranda, a young nursing student who graduated from Harris’s new high school. Beautiful, confident, and the perfect blend of orange and red, Miranda sees Harris for who he really is—funny, smart, and totally worthy of the affections of Nory Fischer, the cute girl who’s in most of his classes. With Miranda at his side, Harris soon befriends geeky Zander (yellow) and even makes headway with Nory (who stubbornly refuses to reveal her favorite color). But Miranda is fighting her own demons, and Harris starts to wonder if she truly has his best interests at heart.