In the Hagler family, you go the extra mile for one another. C. Everette Hagler wrote a book, “Breathless: an Inward Journey,” to describe his undying love for his wife, Cheryl. Their daughter, Jeri Hagler Garcia, moved to Phoenix to help take care of her mother, which enables her dad to remain working until he is eligible for his pension. And Mrs. Hagler?
“My mom (Cheryl) is a picture of generosity and graciousness, she has spent her whole life serving others and it was hard for her to be taken care of by others,” said Jeri. But something came up.
“My mom tested positive for HD six years ago when she was 58 years old,” said Jeri.
That’s when Huntington’s disease steamrolled into their lives. Cheryl’s brother and sister tested next and it turned out they both had HD as well.
Like most people, Jeri had never heard about Huntington’s disease. “I had to write down the name of it,” she said. She turned to google and the first thing she encountered was a “horrifying video of someone in the ’60s” who exhibited extreme chorea.
She and her sister, Karri Wilson, were devastated. They immersed themselves in research. “Lighthouse was super helpful,” Jeri said.
After their mom’s positive test, Jeri and Karri felt compelled to get tested immediately, even though Jeri was four and a half months pregnant and had been bedridden since her second month.
Karri went into the testing process thinking for sure that she had HD, but Jeri was convinced that she herself would test negative.
Their testing experience was particularly traumatic because, going into the testing, their genetic counselor knew absolutely nothing about HD. During the weeks between the appointments, the counselor must have done a little research on HD but none on how to maintain composure when delivering results.
“When the counselor cries when you go back in you know what is going on,” said Jeri.
The counselor ended up bawling and everyone’s roles became unclear. “We were comforting the counselor,” Jeri said.
But the sisters somehow emerged with their test results and were met with the opposite of their expectations. Karri tested negative, meaning that her two children were not at risk for inheriting the gene that causes HD. But Jeri tested positive and her three biological children are at risk. (She also has a stepchild.)
HD eventually affected Jeri’s executive functions and mood to the degree that she was no longer able to work. When she and her family moved to Phoenix to help take care of Cheryl, Jeri had already started the long term disability application process. So, while she couldn’t work, she could still contribute to the well-being of the Hagler family. “It turned into a win/win for all of us, “said Jeri. “Our family has always been blessed and timing was in our favor with this move for sure.”
Focusing the world’s lens on HD
Until the phone rang one day, Jeri didn’t know that Karri had been on a mission. She tracked down the author of “Still Alice,” Lisa Genova, and sent her a heartfelt letter detailing the Hagler family’s experience with Huntington’s disease. Karri stressed to Ms. Genova that a best-selling book would attract much-needed attention to HD.
“It was a pretty neat thing for her to do that,”Jeri said.
One day Karri called Jeri and asked, “Would you be willing to interview with an author?”
The chance to talk about it
That was the beginning of the very special relationship between Jeri’s family and Lisa Genova. The Haglers became a rich source of information and insight for her book, “Inside the O’Brians.”
Ms. Genova talked with the entire family, including Jeri’s uncle and his wife.
“It was very surreal to be able to talk about it,” Jeri said.
Karri and Ms. Genova developed a rapport, and Karri even went to Boston to confer with Ms. Genova about the book.
Soon, according to Jeri, Ms. Genova had expanded her research. She found a police officer in Boston and went on police ride alongs. Despite being a neuroscientist herself, she checked her descriptions of HD symptoms with HDSA to ensure their authenticity. And to inform her writing about a character who is a yoga instructor, Ms. Genova took yoga lessons.
Jeri said that Ms. Genova sent the Haglers drafts of her chapters as she wrote them, and considered their feedback as the novel progressed.
Meeting in person
As her book, “Love, Anthony,” was released, Ms. Genova flew out to Arizona to give a reading at the Tucson Book Festival. That’s when the Haglers were finally able to meet Ms. Genova in person and put a face with the voice and the words. Jeri said that at book signings, Ms. Genova’s passion about the topic was so powerful that it certainly impacted everyone there.
Jeri admires Ms. Genova because she is an advocate. “She challenges people: ‘If this book touched you, you need to donate.’”
In addition to listing the Hagler family in the acknowledgement of the book, Ms. Genova paid a charming tribute to the family by “casting” a couple of them as supporting characters in the book.
There’s a danger of spoilers by going into a complete who’s who.
But … what about Jeri?
“I think I’m the yoga instructor!”