The First Thing About You is neither a memoir nor an autobiography, author Chaz Hayden points out. But there are obvious parallels between his life and the world he’s dreamed up for his protagonist, Harris Jacobus. The most obvious commonality is they both have spinal muscular atrophy (SMA), a form of muscular dystrophy that causes muscle weakness and can make it difficult to walk, speak, swallow and breathe. They both grapple with the challenges of getting around in a wheelchair in a society that often treats accessibility as an afterthought.
Even though Hayden wasn’t interested in writing about himself, as he began to craft the story a few years ago, he realized the perspective he could offer was a unique one: “[I thought] maybe I can take some of the experiences I’ve had, the people that have been in my life and just fictionalize it to show people what it’s like to live with a disability, what it’s like to be a teenager with a disability.”
Hayden is 26 years old, and just that fact alone is somewhat miraculous. The prognosis presented to his parents when he was a two-month-old infant was grim: “The doctor who diagnosed me told my mom, ‘He’s not going to live past a year old. Take him home, cherish the time you have.’” Long story short: the doctor was wrong. Hayden got his first motorized wheelchair when he was two years old and has been on the move ever since. Or, as he puts it in his online bio: “I went full throttle in a split second.”
That’s not to say it’s been easy for Hayden or for his parents, Alan and Sheri. Hayden says his mother and father have been his most vocal advocates from day one, always pushing to ensure he received the best care and seeing him through countless doctor appointments, surgeries, hospital stays and physical therapy sessions. Sheri, a teacher, had taken a step back from her career when Hayden’s older brother, Jacob, was born; she became a full-time caretaker to Hayden when he came along four years later.
Hayden describes the many hardships he’s encountered as puzzles that he’s had the pleasure of solving. One of those puzzles presented itself as he prepared to enter high school in northern New Jersey. Hayden knew the school lacked the technology he would need to be an independent student. But then he heard about a community college program that allowed students to take high school and college classes simultaneously. Another long story short: Hayden started college at the age of 15, and ultimately graduated from the University of Arizona three years later with a degree in finance. He then moved back home to figure out his next move. “I always felt like I wanted to do something helpful, but I never knew what that was,” says Hayden.
It was around that time that Hayden began to write. He started working on a novel that he freely admits wasn’t very good. “I was 18 at the time,” he says. “I had no idea what I was doing.” But he kept writing, even after he found work in the financial industry. He started attending writing workshops and critique groups in search of feedback.
In 2019, Hayden got the idea for the book that would become The First Thing About You, which was released in September by Candlewick Press. It’s a Young Adult novel about a 15-year-old boy with SMA who is looking for a fresh start when his family moves from California to New Jersey. He’s determined to carve out a place for himself instead of being relegated to the sidelines as an outsider in a wheelchair. And, like a lot of typical teenagers, he has a crush. But when he enlists the help of his young, attractive new nurse to help him make some headway in that department, things don’t go as planned.
“This is something that’s really personal to me to want to put out into the world,” Hayden says. One of his priorities is transcending stereotypes about people who have a disability, and how they’re portrayed on the page and screen. “Oftentimes [the plot] is just an aside, it’s never really developed,” says Hayden. “Or you feel a lot of pity for the person that’s disabled.” The way Hayden sees it—and the way he hopes his readers see it—Harris Jacobus has the same hopes, dreams and fears as his peers. He just happens to be in a wheelchair. “The feelings and themes in it are something on a human level we all can understand, whether you have a disability or not,” Hayden says.
Whether he’s reading or writing, Hayden favors the YA genre for the raw intensity and honesty of emotion that seem to spring naturally from its plot lines. “When you’re a teen and something happens, it truly feels like the end of the world,” he says. “I love that vulnerability that teenagers have. Kids and young people care so much.”
Hayden, who moved to Easton with his family last year, still works in finance. But he has no doubt that, in coming into his own as an author, he’s found his calling. “When I’m writing is the only time I feel like my real, true authentic self,” Hayden says. “This is my purpose.” Lucky for him, he’s good at it. Kirkus Reviews called The First Thing About You “a witty, candid take on love, friendship, belonging and disability.” John Corey Whaley, author of National Book Award Finalist Noggin, said Hayden “writes with the humor and heart of a seasoned storyteller.” Earlier this year, BuzzFeed included the book on its list of the most highly anticipated YA titles of 2022.
Hayden has already finished the first draft of his next book. He says it’s not a continuation of The First Thing About You, although faithful readers will be rewarded with a few Easter eggs in book number two. Hayden expects it to be published in 2024. And he’s just getting started. “I’m going to continue to write,” he says. “It won’t stop there.” He hopes to make the leap to screenwriting at some point. And he would love to see his work turned into a TV show or a movie.
For those hungering for more Hayden in the meantime, he maintains a regular blog on spinalmuscularatrophy.net (with links to each entry on his own website, chazhayden.com) where he waxes on everything practical and personal when it comes to living with SMA. In the latter category, he writes about dealing with the worsening progression of the disease and engaging in a protracted battle with his insurance company to get coverage for a particular drug, which he ultimately had to stop taking. (“Our pharmaceutical and insurance system is broken. I think we all know that, though,” he writes.) He has low moments, just like everyone else. But Hayden says he believes he owes it to his parents—his biggest supporters and allies who sacrificed so much for him—to keep pushing forward. “They’ve shown me that I can do anything, regardless of my disability,” says Hayden.
He hopes to parlay that positivity into a mentorship role. He has a message of hope for other young people who might be feeling discouraged after the diagnosis of a disability: “You can go to college. You can find a job. This is all realistic now in this day and age.”
Published as "Insight" in the October 2022 edition of Lehigh Valley Style magazine.
