What would you do if doctors told you at the age of 9 you would be lucky to celebrate your 18th birthday? First it made Shelly Weiner Maguire angry and defiant. Then it motivated her to push herself to the limit and stop at nothing to reach her goals to be a successful businesswoman and live a long life. Now 51, Maguire has recently written about her struggles and successes in “Dancing in the Storm.”
She was actually approached by the publisher to write the book, along with co-author Beth Huffman.
“They found my story of growing up with Cystic Fibrosis, my life challenges and determination to be inspiring and they asked me to share my life story,” Maguire said.
Maguire is a Kansas City native and the daughter of Felicia and Seymour Weiner. She grew up attending Kehilath Israel Synagogue, where her parents are still members. The book follows her quest to survive Cystic Fibrosis, the lethal disease that invaded Maguire’s lungs at birth but wasn’t diagnosed until she was 9 years old.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 70,000 children and adults worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Readers will learn about Maguire’s fearless journey that takes her from the role of class clown to that of an entrepreneur, TV personality, radio host and prominent skin care developer who appears regularly on HSN. A portion of the book’s proceeds will be donated to the National Cystic Fibrosis Foundation and other children’s charities. It is currently available through the publisher, www.stanleypublishing.com and will soon be available at Amazon.com and Barnes and Noble.
“The book is a lesson in stepping through barriers and around boundaries to achieve life’s goals. This book will serve as an inspirational tool for everyone as it is written through the eyes of an angry adolescent, a rebellious teen and now a success-oriented mature adult,” Maguire said.
“I want to reach, inspire and help others who face their own life challenges — not just CF.”
Maguire truly believes the disease has affected her in a positive way.
“It has made me more ambitious. It’s made me stubborn in a good way. It’s kept me from ever believing in the words no or can’t. I just don’t believe in those words. It’s made me really persevere. I’ve pushed the limits to prove that I can succeed,” she said.
Many people who knew Maguire when she was young never knew she had Cystic Fibrosis. She had made a conscious decision to keep that fact to herself.
“I was so afraid of growing up different and being ostracized for being different and just not fitting in that I hid my disease until I was 25 or 30 years old. I just didn’t come to terms with it.”
“Life was tough enough. I was overweight as a child. Even being Jewish made you different and this was just one more thing I couldn’t add into the pot. So I hid my disease,” she explained.
Maguire said as she got older she figured out the disease is something that really defined her life in a good way.
“I realized how much it’s driven me to be a better person. And the more that I’ve worn it as a badge of honor or courage, the more I’m finding I’m actually touching other people’s lives,” she said. “In fact, all the things I wanted to hide from when I was younger — being different — are the very things I want to share with everyone now.”
As a child Maguire was told she would be lucky to live until she was 18. Now the average life expectancy for CF patients is 37. Maguire attributes her longevity to taking very good care of herself. That includes staying fit, progressive medications and a good mental attitude.
“Cystic Fibrosis is literally a daily struggle because it affects so many organs in your body,” she explained.
She firmly believes in being active, both mentally and physically.
“So much of it is really making that mental step saying that I’m going to do everything I have to do to get around these obstacles and get through these boundaries and challenge myself with little victories every day. I really look at ways to set goals and set victories for myself,” she said.
Maguire goes to the gym often, and said her friends and family frequently give her trouble for being so busy and active. Her doctor is not one of those people.
“My doctor says whatever I’m doing I should keep doing because I think it’s that part of it that keeps me from feeling depressed and focusing on how bad life is versus focusing on how lucky I am,” said Maguire, who lives in Naples, Fla. She and her husband Frankie Tedesco have been together more than 10 years and married for one.
Maguire is admitted to the hospital many times a year. Even when she’s in the hospital she tries to stay as physically active as possible. Most of the time that means dragging her IV pole along with her.
“I’ll ask to go outside and run or take a walk or I’ll ask to go to physical therapy,” she said. “I’m very dedicated to running every day even when I’m sick with IVs in my arms.”
It only took Maguire a few short months to write the book, and she found the process really interesting. She still had her old diary that helped her remember what she did and thought as an angry adolescent and as a very belligerent and obstinate teenager.
“I went through that angry and denial stage then, and now as a mature adult the position and the focus I have that I think dealing with these obstacles has really enhanced my life. I don’t really know what I would be or who I would be without facing these obstacles,” she said.
While the book is about the serious issue of battling CF, that’s not the only focus.
“It’s really about dealing with obstacles and diseases and business,” she said. “There’s humor, there’s sadness and grief, and it even touches on the love story between me and Frankie.”