IOWA CITY — Tara Fall’s husband once emailed her a picture taken at a military dinner a few months before, of him and a nicely dressed woman.
Fall spent a day stewing, angry at her husband for sending a picture of himself and another woman. Who was the woman, she wondered, and why would her husband send the photo to their home email address?
Then she realized the woman in the picture was her.
Fall, 37, doesn’t recognize her own face in the mirror. She doesn’t recognize the faces of loved ones and friends. It’s a condition called prosopagnosia, or “face blindness,” which has afflicted her since a 2003 stroke.
“It’s an intimidating world, but it’s one that I’ve learned to cope with,” she said.
Her upbeat attitude is partly due to knowing that the study of her condition may someday help others.
Fall is a Monticello native who now lives in California, where her husband is based with the U.S. Navy. But she and her two daughters return to Iowa every summer, to visit family and so Fall can see doctors at UI Hospitals and Clinics, where she takes part in the Iowa Neurological Patient Registry, a collection of 525 members with damage to a specific brain region.
Her participation in the registry is “paying it forward,” Fall said. Perhaps someday, she said, the knowledge provided by the study of her brain can lead to inroads against epilepsy or other brain disorders.
“I hope someday, the things they’ll learn from me will help my children, my grandchildren or your family,” she said. “The patient registry, it’s not just for patients (who) have had brain injury. It’s for everyone.”
The registry was started in 1982 by neurology professor Daniel Tranel and former UI neurology professors Antonio Damasio and Hanna Damasio. Tranel said he believes it’s the best patient registry of its kind in existence. The research is funded by the National Institutes of Health.
“It’s really provided a unique resource to study neurological problems and neurological diseases and to really give us some strategies to conduct research that hopefully will identify cures and preventions for neurological diseases,” Tranel said in a statement.
Recently, for example, doctors showed that the amygdala is the fear sensor in the human brain, a finding that could improve treatment of Post Traumatic Stress Disorder and other anxiety conditions.
Fall was born with epilepsy. In June 2003, she had surgery at UI Hospitals and Clinics to remove part of her brain’s temporal lobe in an attempt to control her seizures. A stroke near the end of that surgery left her half paralyzed and at first took away her eyesight.
Slowly, Fall got many of those functions back, though she still has lost vision in one eye. But as she recovered, she realized she was having trouble recognizing people’s faces, especially when she ventured into new situations.
Doctors diagnosed her with anterograde prosopagnosia, which means she remembered faces from before her brain injury, but no one she has met since. That means, as family and friends age and their faces change, she “loses” their faces in her memory.
“I’ve learned to cope quite well. I can hide it from most people,” Fall said. “But on the other side, it’s very intimidating when you don’t know your kids.”
Fall uses strategies such as buying distinctive backpacks for her daughters to help her recognize them when she picks them up from school, or by remembering someone’s unusual glasses or body characteristics.
“I recognize more the clues that fit the person than I ever recognize the person,” she said. “You concentrate so close on one characteristic that someone has. I think I have gotten so much better about pinpointing little things about people that most people would overlook.”
Going into that 2003 surgery, Fall wasn’t sure what she might lose as a result. Worried she would lose her memory completely, she wrote down details of her life — the names of her children, the layout of her home, her likes and dislikes.
Waking up with her memory was “a gift,” Fall said, but it was bittersweet to realize eventually she would lose every face she knew.
“I had my memory, but I won’t be able to remember some things,” she said. “That part of it was kind of bitter. But on the flipside, I had so many things to be grateful for.”
Tranel, director of the UI neuroscience program, said recognizing faces is something we take for granted, something we do from nearly day one of life.“Her reaction to it, he said, “is nothing short of inspirational.”