Patient stories

Nicole Ackley: a Story of Rebellion, Resilience and Generosity

All photos courtesy of Nicole Ackley

“I don’t believe in following any specific ways of dressing or looking. I don’t follow how people are. I’m just me. I do what I want.”

Nicole Ackley has been battling cystic fibrosis (CF) for most of her life. The self-identified bookworm and non-conformist finds similarities between herself and her favorite characters in novels. Nick finds solace in her favorite novel characters and lives vicariously through them to escape her sheltered life.

Nick Ackley with her iPad gifted by the Cystic Fibrosis Foundation, so she can continue reading and connect with the CF Community online

One rebellious literary character that Nick identifies with is Tris Prior from the Divergent series, written by Veronica Roth. Tris and Nick both possess traits of bravery and isolation from their families. Nick’s been all too familiar with looking out for herself since her upbringing much like Tris has had to, once getting taken away from her family. They both are strong, young women who have fought to live their own way and face the opinion of others as nonconformists. Tris is a nonconformist, or ‘divergent’, by breaking her society’s laws through being a part of multiple social classes, or ‘factions’. Nick, too, does not subscribe to social norms and is proud of her individuality: “I don’t believe in following any specific ways of dressing or looking. I don’t follow how people are. I’m just me. I do what I want,” Nick explains.

Nick displays her “Unkindness” Divergent Tattoo.

“I have the Divergent tattoo!” Nick excitedly shows the Raven tattoo that both Nick and Tris possess. “There’s a bird for each one of my family members. It also has another meaning to me too because these are ravens and a group of ravens is called an unkindness and it kind of signifies the life I had growing up.” Describing her childhood as “brutal,” Nick’s family life wasn’t ideal. “My father was an alcoholic and he was verbally and physically abusive. And my brother always treated me like I was the worst thing that ever happened to him and I just felt like I was never really wanted,” Nick gives a glimpse into her childhood.

Nick appears above with her family in this childhood memory from her brother’s graduation.

Throughout Nick’s childhood, she had to deal with the consequences of having an invisible illness, due to the lack of info available online about CF and poor awareness of the disease. Nick’s family was unsympathetic to her chronic condition and often blamed her, rather than her genetic mutation, for having CF. Nick describes feeling like a burden growing up because her dad, mom and brother treated her like she was a disruption in everyone’s lives. Nick was kept in a bubble since she was younger—she wasn’t allowed to play sports, she was raised to fear everything that could possibly make her sick and worsen her condition. Nick was unable to figure out who she was, due to her constrained environment and resulting isolation.

Nick’s peers also treated Nick unfairly because of her disease. They viewed her as an “attention-seeking” burden receiving special treatment. Nick grew up in isolation from her schoolmates, who were uneducated on CF. Oftentimes, Nick would have absences due to her disease and instead of being considerate of Nick’s medical condition, her classmates ostracized her: “I felt really alone growing up. I spent most of my time just sitting in my bedroom watching television or just lying in bed crying because I didn’t have anyone that I could really depend on,” Nick explains the state of seclusion she felt without the support of her classmates.

Nicole with her loving partner Jerry.

Unlike the cruelty she experienced in her childhood, she found solace in her current husband of 10 years, Jerry. In Nick’s eyes, Jerry is to Nick what the character Augustus is to the character Hazel in The Fault in Our Stars, by John Greene. Nick identifies with Hazel Grace, a teen cancer patient, because they both felt isolated growing up and yet, are hopeless romantics.

In The Fault in Our Stars, Hazel refrains from getting close to people to avoid burdening them with her disease but she makes the exception for Augustus. This is similar to how Nick describes Jerry as her “rock” and how Jerry has taken her out of crippling “bubble”. While Augustus takes Hazel to Amsterdam, Jerry has taken Nick on wild safari rides and exciting mountain hikes. While Augustus has shown Hazel how to make the most of their time together, Jerry has shown Nick how to break out of her fear of getting sicker and explore the world around her. Both Nick and Hazel had their eyes opened by the discovery of love: both for themselves and for others.

Nick reading a novel from her vast library of most beloved books.

Nick extends her fearlessness to be herself to other CF families, parents and teens by giving advice about growing up with CF. Nick uses social media outreach to connect with the CF community. She loves receiving and giving advice, namely on relationships, because she’s found so much joy in her partnership with Jerry. “When social media became a thing and I found this whole new world that was filled with tons of CFers… “It’s been incredible for me because I’ve met so many people and so I can help them with their struggles and they can help me with my struggles,” Nick raves.

For more on Nick you can follow her pursuits here:
Twitter: @cfcyster
Facebook: @spwvtphotography

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