GENEVA – Noel Storm had a double mastectomy in 2007 and started a mastectomy support group at LivingWell Cancer Resource Center in Geneva.
The support group is where she met Kathleen “Casey” Clabby, who had a double mastectomy in 2009.
“We were sitting around, talking about the emotional impact that surgery will have on you and we decided to do something about it,” Clabby, of Sugar Grove, said. “We decided we would create a documentary – which we had no idea how to do.”
Storm, 69, also a Sugar Grove resident, talked to Clabby’s hair dresser about it.
“She had a client whose son taught at [Northern Illinois University],” Clabby said.
Michael Corvino, who teaches media production courses at NIU in DeKalb where he lives, agreed to help the women create a documentary.
Eight years later, “Hidden Scars,” a 48-minute documentary, will be shown at a special screening from 6:30 to 8 p.m. on Jan. 17 at LivingWell Cancer Resource Center, which is part of Northwestern Medicine Delnor Hospital in Geneva.
The screening is free and open to anyone affected by cancer, including health care workers. Call 630-262-1111 to register.
Storm, 69, said the documentary is for anyone who has had a mastectomy, single or double.
“The reason that we started the whole process was because I had no clue as to the emotional impacts of what it is to lose a body part,” Storm said. “In the group I started, we call it an amputation, because it is.”
When a woman faces a mastectomy, the focus is on saving her life, Storm said.
“You just want the cancer gone,” Storm said. “The other hits you later. … Your breasts are part of being a woman and when you lose that part, it’s a very emotional process.”
And it’s not something a woman just “gets over,” Storm said, because every time she looks in the mirror or puts on clothes, she is reminded of the mastectomy.
“It’s always there, but it gets better,” Storm said.
Clabby, 62, said they interviewed Fox Valley women and a group of African American and Hispanic women in Chicago, as well as three doctors, oncologists from Geneva and Chicago and a plastic surgeon from St. Charles.
“Every woman will react to that diagnosis based on what her life has been up to the point of diagnosis,” Clabby said. “That is going to impact how you cope – whether you reach out, or isolate. Every woman’s story is different and her journey is unique. But enough things are common to this journey that we need to speak out and help women.”
Making the documentary
Corvino donated his time to help the women create their documentary. His wife, Jennifer, provided the narration.
Corvino said he has made documentaries in the past and has always been interested in social commentary-type documentaries.
“When I met with Casey and Noel, I was quite intrigued by what they had to say and decided to take on the project,” Corvino said.
“The biggest thing I learned was that simply having a terminal or potentially terminal illness has affected these women moreso than just the idea of being sick,” Corvino said. “There was so much more to their emotions. A big part of this is that a lot of what women identified with – in some ways – the fact that breasts are part of being a woman. … People who are performing these operations do not [consider that these] women are losing a big part of their identity to stay healthy.”
Clabby said she learned that creating a documentary is very intense and time consuming.
“We had to look through hours and hours of film,” Clabby said. “Every time there was one sentence we wanted in, we put it on an index card. And we put them into color-coded categories as we decided how we wanted the documentary to flow.”
They had to narrow down what would be used or else the documentary would have been five hours long, Clabby said.
“The generosity and kindness and patience of Michael – weekends and evenings – he gave more than a thousand hours to us because he believed in the project,” Clabby said.
“Our goal was to help other women to know what was coming – emotionally,” Clabby said. “We are so impressed by the courage of the women in the documentary who shared some vulnerable, personal feelings about this journey.”