Saturday, December 29, 2012

A Puzzling Diagnosis

Imagine watching your child kicking a soccer ball with friends or playing pick-up basketball but not knowing which child is yours. Imagine walking into a party in your neighborhood and not seeing a familiar face. Imagine attending a family wedding but not recognizing a soul. Since 1993, this has been Chuck's new normal. In his world, every face belongs to a stranger, even if the person he passes silently on the sidewalk or church pew is a co-worker or close friend.

Although Chuck looked exactly the same after epilepsy surgery -- once his hair grew back, at least -- no one looked the same to him. He was surrounded by the same familiar family members, co-workers, friends and neighbors but could "recognize" the people in his life only by their voices, gait, scent, mannerisms or distinctive hairstyle.

That's how Chuck discovered prosopagnosia in the first place. When he was discharged from the Medical College of Georgia 10 days after surgery, his visual perception seemed altered but the changes were subtle. Colors were the same, but the hues were different. If our dark blue Chevy Lumina was parked next to a similar model of the same color, Chuck sometimes went to the wrong car. He had trouble finding a certain can of soup in the pantry or locating a particular tool in the garage. For the first month or so following surgery, we thought these idiosyncrasies were related to the trauma to his brain and the gradual healing process. After all, Chuck had temporarily lost the ability to speak when his brain swelled in the days following surgery, and he was still undergoing speech therapy to help overcome difficulties with word finding and retrieval.

But when Chuck returned to work six weeks after surgery, co-workers also looked different. Since he couldn't explain the changes and seemed to reengage with colleagues during that first day back on the job, he chalked up the experience to sensory overload. But day two at the office was a repeat of the first. His co-workers were strangers once again.

Now, we knew something was wrong, though we didn't have a name or explanation for the problem. Imagine passing coworkers in the hall, sitting across from them in meetings or standing in line with them in the cafeteria and not recognizing a single face. And the problem extended beyond the workplace. Chuck couldn't pick out our two children among a group of classmates or teammates. If he lost sight of me in a crowd -- at church or in a grocery store, for instance -- he had to focus on remembering what I was wearing while searching for me.

When Chuck returned to MCG for a 10-week post-op assessment and testing, he mentioned the strange difficulty in distinguishing faces. Without a word, his neurosurgeon began pulling films from Chuck's chart while keying information into his computer. He examined the MRI film and notes from Chuck's pre-op testing. A few minutes later, he told us he strongly suspected that Chuck had acquired prosopagnosia. We now had a diagnosis, but we had no idea what the term meant or where it would lead us.

Friday, March 30, 2012

A Little Background Is in Order...

So what is prosopagnosia, you may ask? That's a legitimate question, because most physicians have never seen a case of the condition, if they've even heard of it.

The term is literally from the Greek -- "proson" for face, and "agnosia," for not knowing. When my husband, Chuck, developed the condition as a complication of epilepsy surgery 19 years ago, his neurologist and neurosurgeon accurately interpreted his symptoms but could offer little additional help. In 300 epilepsy surgeries performed at the center, they had never seen a case of prosopagnosia, and studies on the condition were few and far between. Members of the team conducted follow-up neuropsychological testing, confirming Chuck's face blindness, and handed us a photocopy of the first chapter from The Man Who Mistook His Wife for a Hat and Other Clinical Tales, the book of classic case studies from renowned neurologist Oliver Sacks. Awesome, I remember thinking. Will Chuck now see me as a hat?

Well, it turns out Chuck still viewed my face as a face -- albeit a confusing collection of features. That's what people with prosopagnosia see: eyes, nose, cheekbones, brow, mouth, hair, and ears, but with no way to assemble those features into the single, distinctive image of a face they can recognize and store in memory.

That's one of the major losses Chuck has suffered since the day of his surgery. Since he can't recognize faces, he's been unable to snap a mental photograph of the faces of people he's met since December 28, 1993 -- friends, colleagues, neighbors. He has a memory of my face and those of siblings and close friends as adults, but our children were just eight and ten when Chuck developed prosopagnosia so he cannot "see" their faces as adults. That's caused practical challenges, as he sometimes has trouble discriminating between me and our daughter, Kathleen, since we're both tall and slender. Fortunately, her hair is longer and darker than mine, but most differences -- except for age -- end there.

And age is not a terrific differentiator for people with prosopagnosia. Neither is skin tone. Chuck has trouble distinguishing between a light-skinned African American and a dark-skinned Caucasian. He can identify a child from a short adult, but beyond that he struggles to categorize a person's age. He tends to focus on other attributes: voice, gait, a distinctive perfume, and the like. Unlike the unique image of a person's face, those characteristics aren't terribly reliable, which has caused more than one uncomfortable situation. More on that to come.

Tuesday, March 20, 2012

Putting a face...with a face

It's the first day of spring, which seems an appropriate day to begin a blog.

The primary goal of About Face is to examine, share, commiserate and explore the many dimensions of prosopagnosia, or face blindness. My husband, Chuck, developed the condition 19 years ago following a left temporal lobectomy designed to control the complex partial seizures that began after a blow to his head during a high school phys ed soccer game.

That unintended injury changed his life profoundly, as did the surgery. Although Chuck's seizure control improved, he was left with a devastating complication: he could no longer recognize the doctors who performed the surgery, the nurses who cared for him in the days that followed or, he would gradually discover, his co-workers, friends, parents, and even his wife and two children.

This blog will attempt to chronicle our journey with face blindness.

Because I'm a writer, friends have encouraged me for years to write about prosopagnosia and to share Chuck's story. But the direct impetus for this blog comes from a terrific piece on prosopagnosia that was featured two days ago on 60 Minutes. Here's the link: If you've never heard of face blindness, watching this 30-minute segment will open your eyes to the fascinating process of facial recognition and to the profound loss experienced by those without that ability.