Local woman details lifelong condition in new book
Most people might experience one or a couple of broken bones in their whole lifetime.
One local woman has had at least 65 bone fractures in her 70 years with the rare bone disease osteogenesis imperfecta, but she’s kept right on going.
Mary Encinias uses her lifelong struggle with the condition also known as brittle bone disease for the backdrop of her first book.
“OI is considered under the rare bone disease umbrella because there’s less than 50,000 people in this country with it,” Encinias said.
The title of the book, “Living Without Bubble Wrap,” reflects the author’s inherent wit and optimism. Instead of focusing on limitations imposed by the disease, she wants the book to offer some hope for others.
“My story is not one of woe is me, but wow is me,” she said. “I want people to feel like they can still have a full life with whatever it is they’re dealing with.”
Mary and her husband, Ben, retired to Gilmer County from Florida 12 years ago. Both are active members of Cherry Log Christian Church.
Before retirement, Encinias worked for 30 years in the children’s welfare and mental health fields, mostly as a counselor. That’s something she and Ben, who previously worked as a school counselor, had in common.
“We had similar jobs, and that’s how we met. I was working for the mental health agency, and he was working in the school system,” she said.
Encinias was a baby when a routine checkup led to her eventually being diagnosed with OI.
“My mother took me in for a six-month checkup, and the doctor said I had broken bones. One of my hands just drooped. The doctor said ‘What have you been doing with this child?’ and my mother said, ‘Well, we just love her. That’s all!” she said. “Apparently, as an infant, I didn’t cry much, so she didn’t know (anything was wrong).”
The genetic disorder was later confirmed by a specialist at Rainbow Babies and Children’s Hospital in Cleveland, Ohio, near Elyria, Ohio, where Encinas was raised. The initial outlook was grim.
“They broke the news to my parents and said, ‘Don’t expect much. You don’t know how long she will live or if she’s ever going to walk,’” Encinias said.
Not only did she live and walk, Encinias finished high school, then college at Kent State, where she started a year after the infamous 1970 shootings of students by National Guard troops.
Finding her way after college included working for various relief organizations and doing mission work in Mexico. A broken hip cut her mission work short, and Encinias later took to the mental health field, eventually counseling children with emotional issues.
“I worked with the kids who get kicked out of school for throwing chairs, angry kids and kids who’d been neglected and didn’t develop as they should,” she said.
Encinias said her family was a well of support through it all.
“My parents were really good people, and I had the best childhood with five older brothers and sisters,” she said. “I think the fact that I was raised in such a loving family helped me become more resilient. I had a good foundation, but you do have to develop some courage and perseverance yourself.”
Ben, who was in the Air Force for 10 years and served in Vietnam, has also been a pillar of strength, Encinias noted.
“A lot of guys aren’t comfortable in hospitals, but he is. These days, when you go to the hospital, you need to have an advocate with you,” she said.
The self-published book has been an on-and-off project for several years, Encinias noted. In that time, the aspiring author joined a nearby writer’s group and a local storytelling group, both of which helped her put the pieces of the project together.
“I’m a person who doesn’t sit still very long unless something’s broken, and I have to sit still. I like to be out and about,” she said.
Encinias recently suffered a hip fracture, but is regaining mobility with help from a walker. She also recently celebrated her 70th birthday. Encinias said she’s only met one other person with OI, and that was just about five years ago.
“They know a lot more about it now, and there’s now 17 different types (of OI). I’m type 5, but they thought for a long time I had type 1. I’ve had 65 fractures, but there are some people who’ve had over 100,” she said.
For now, “Living Without Bubble Wrap” is only available at Amazon.com. Encinias is excited about her first book signing opportunity, which will be at a March 16 signing event for poets and authors at the Blue Ridge Art Center in Fannin County.
Encinias hopes to eventually do other book signings around Gilmer County when all healed up. In the meantime, she’ll be keeping busy with whatever the day might bring.
“There have been many fractures, but they’ve rarely slowed me down,” she said.