For West Hempstead resident Peri Finkelstein, writing a memoir meant confronting painful memories, challenging expectations and telling her story on her own terms.
Finkelstein, 26, who lives with muscular dystrophy, is the founder and CEO of Team Peri Foundation. Her memoir “The Velvet Bow and Other Dark Sh*t,” was published by Lucky Book Publishing on Sept. 9. It explores disability, medical challenges, bullying, education and personal growth.
Through emotional honesty and dark humor, Finkelstein hopes readers will see her as a whole person rather than someone defined by her rare form of the disorder.
The idea of writing a book had been on Finkelstein’s mind since she was a student in middle school, but she didn’t begin to put her story on paper until 2024, when she was working on a TED Talk, a recorded public speaking presentation. A turning point came when she began using a Freewrite, a distraction-free digital writing device that connects to a computer, which helped her write much of the book in about two months.
“It’s my whole story,” Peri said. “Nothing left out. I see a world one way, and this is how I live my life. It’s not all rainbows and sunshine.”
The memoir includes joyful memories, travel and humor, but also addresses hospital stays, academic challenges and instances in which her disability affected the way in which others treated her.
“I have to write my truth — I have to write my story,” she said of her thinking while she wrote. “It’s for me and my own self-worth.”
Finkelstein’s mother, Lori, said the memoir offers a fuller picture of her daughter, including experiences that some family members had not known about before reading the manuscript.
“She was unbelievably fearless writing it, and now she’s promoting it,” Lori said. “She doesn’t have to accept what’s given to her.
The book’s title reflects one of its central themes: refusing to accept what others believe a person should settle for. Finkelstein once received a gift of a hat with a velvet bow, despite her strong aversion to the texture of velvet. The experience became a metaphor for whether people must accept what is offered to them because of their circumstances or ask for something different.
For Finkelstein, that question extends to the expectations of people with disabilities, and assumptions about their abilities and potential.
Her mother said that educators sometimes underestimated her because of her medical and physical challenges, but she graduated from Adelphi University in 2022 and earned an MBA, Also from Adelphi, in 2023.
Her advocacy extends beyond her memoir. Finkelstein has raised more than $1 million for charity, with the help of friends, family and a walker, in 12 half marathons and was featured in Forbes in 2022. Her TEDx talk, “Always Wanting More & Stepping Out of Line,” was narrated by actor and neuroscientist Mayim Bialik.
Finkelstein also produces and co-hosts the “Step out of Line with Peri Finkelstein” podcast with her mother. The podcast, which she began in 2020, has produced more than 125 episodes.
The phrase “Step out of line” became a recurring theme in Finkelstein’s advocacy after she heard actor Alex Borstein, a star of the series “The Marvelous Mrs. Maisel,” use it in an acceptance speech at the 2019 Emmy Awards, when Borstein won a Best Supporting Actress – Comedy Series award. Finkelstein later incorporated the phrase into her podcast and Team Peri Foundation programming.
It was also used for the Fox 5 New York segment “Step Out of Line with Peri Finkelstein,” which won a 2025 New York Emmy Award for Diversity, Equity and Inclusion in News.
“I may not have control over what my body does,” Finkelstein writes, “but I do have control over how I show up.”
She founded the Team Peri Foundation in 2022. The nonprofit works to amplify marginalized voices, challenge societal norms and combat ableism — discrimination against one’s disabilities — through the podcast, speaking engagements and partnerships with organizations including Runway of Dreams, which works to improve accessibility for people with disabilities across the fashion, beauty and lifestyle industries through advocacy, education and collaboration, and other child life programs across Long Island and New York City.
Finkelstein’s memoir has received advance praise from author and television producer David Simon, whose credits include novels “Homicide” and “The Corner,” and creator of HBO’s “The Wire.”
“With The Velvet Bow as much a manifesto as a memoir, Peri Finkelstein has delivered a narrative of endurance and triumph with wit and honesty, a clear argument for those living life with even the most dramatic and exhaustive disabilities to be seen as the people they are,” Simon said. “This is a blunt but welcoming story, inviting readers not to pity or gloss the physical realities of disability, but to instead engage in a coming-of-age tale for a young woman finding confidence and purpose.”
Borstein and Bialik also provided advance praise that appears on the book’s cover. An audiobook edition is planned, with Danielle Monaro, co-host of iHeart Radio’s “Elvis Duran and the Morning Show,” expected to narrate it.
“The Velvet Bow and Other Dark Sh*t” is available through major book retailers.
