Although the inability to recognize faces is the most disabling aspect of prosopagnosia, the condition is multi-dimensional -- literally. Today, Chuck and I traveled to Austin, Texas, to spend a long weekend with our daughter, who is celebrating her 30th birthday. The trip brought to mind some of the spatial challenges he faces when navigating the world.
Chuck's sense of direction was deficient before he acquired prosopagnosia. From the time we were newlyweds 36 years ago, he relied on maps to track even familiar routes and had difficulty committing new directions to memory. However, Chuck's navigational skills deteriorated noticeably in the years following his brain surgery. Traveling is now disorienting and anxiety-inducing. He has difficulty processing the rush of information in a large airport or train station. And, similar to his inability to characterize individual faces, Chuck has difficulty spotting familiar landmarks that could point him toward his destination.
Thus, a trip through Hartsfield-Jackson Atlanta International Airport -- our local airport and also the world's busiest -- requires extra time and care to ensure we avoid a separation. Certainly, most people do this intuitively. Couples, families and business associates don't travel through airports and deliberately leave someone behind. But if I were to step away after passing through the security checkpoint or step off the underground train without ensuring that Chuck is one step behind, he would not be able to find me. Of course, he's an intelligent adult, so he could find an airport flight monitor and eventually locate the departure gate. But the process would be methodical, not a sprint to the gate.
We sometimes joke that I could have some fun with this if I wanted to hide in plain sight. And Chuck has a good sense of humor, able to laugh at himself when he makes a wrong turn on an airport concourse coming out of the restroom. But sometimes his spatial disorientation is no laughing matter. He's occasionally made a wrong turn walking the bike paths near our home and found himself in a neighborhood that looked totally unfamiliar. (Thank goodness for cell phones.) And there is no "divide and conquer" in our travel plans, where one goes for coffee, the other for a snack and we meet at the gate. From the time Chuck was diagnosed with prosopagnosia, whether on our own or with our children, family or friends, we have traveled in a pack.
In fact, our children were acutely aware, from an early age, that it was important to keep their father in sight in a crowd -- as much for his sake as for theirs. Even today, when we're together as a family, I sometimes notice them glance around instinctively to make sure they don't lose sight of their dad.
The degree of difficulty is higher when we travel through unfamiliar airports. And at Grand Central, when we visit New York? Although the station is an adventure for most visitors and a challenge for some, the frenetic activity and dizzying information displays are simply overwhelming for Chuck.
In short, plane and train trips are routine for most travelers, but not for those with prosopagnosia. Maybe some of the signs people hold up for arriving airport passengers are to welcome familiar faces, not to guide strangers to their limo.
Saturday, February 16, 2013
Thursday, February 7, 2013
When Acquaintances Become Strangers
Today, we had to drop out of a group of couples from our church that meets every month because it's too stressful for Chuck to participate in these gatherings, even though it's a friendly crowd. Sometimes I think a "mixed" group of strangers and friends is more difficult for Chuck than a homogeneous bunch of strangers -- "Awesome! I don't know anyone!" -- or friends -- "OK, everyone here knows me so I'll have to mind my manners."
Over the past few years, this stepping back, or dropping out, socially has become more common. It's been nearly 20 years since Chuck's surgery, representing two decades of meeting people for whom he can't form a "picture" of each face in his mind. Although a few close friends greet him EVERY time by introducing themselves by full name, most people think, "Well, even though he can't recognize my face, he should know me by now." For the most part, that's completely wrong. He is blind.
In fact, Chuck has lost much of the context for the closest friends and family members he knew before prosopagnosia. They've aged, or moved, or died. For other acquaintances, he confronts a jumble of "Where did I meet them?" "How do I know them?" "What do we have in common?" when he encounters them. I sometimes see these questions play through his head as he struggles to use the available cues -- voice, gender, size, sometimes age -- to try to determine someone's identity. Doing this in a crowd, and then trying to remember what everyone is wearing so he can tell them apart after the initial greeting, is exhausting. And stressful, sometimes prompting a seizure. When that happens, the gathering is over for us. So, sometimes, it's easier not to attend in the first place.
Over the past few years, this stepping back, or dropping out, socially has become more common. It's been nearly 20 years since Chuck's surgery, representing two decades of meeting people for whom he can't form a "picture" of each face in his mind. Although a few close friends greet him EVERY time by introducing themselves by full name, most people think, "Well, even though he can't recognize my face, he should know me by now." For the most part, that's completely wrong. He is blind.
In fact, Chuck has lost much of the context for the closest friends and family members he knew before prosopagnosia. They've aged, or moved, or died. For other acquaintances, he confronts a jumble of "Where did I meet them?" "How do I know them?" "What do we have in common?" when he encounters them. I sometimes see these questions play through his head as he struggles to use the available cues -- voice, gender, size, sometimes age -- to try to determine someone's identity. Doing this in a crowd, and then trying to remember what everyone is wearing so he can tell them apart after the initial greeting, is exhausting. And stressful, sometimes prompting a seizure. When that happens, the gathering is over for us. So, sometimes, it's easier not to attend in the first place.
Friday, January 25, 2013
Did I Do My Homework?
The decision to have the epilepsy surgery that resulted in prosopagnosia was not one that Chuck undertook lightly. He had been taking medication since he was 15 years old -- a spectrum of mono and combo therapies that included carbamazepine, phenobarbital, phenytoin, valproic acid and others -- but had never been seizure-free. At the time he was considering surgery, he was on high doses of two medications, which caused dizziness, hand tremors and occasional insomnia. He needed lab tests every three months to monitor his liver function.
When we arrived in Atlanta in 1979, Chuck had found a neurologist recommended for his expertise with epilepsy. The physician was young and energetic and served on the boards of several professional medical organizations. After experimenting over 10 years with multiple combinations of anti-epileptic drugs, however, the neurologist threw up his hands and told Chuck he had nothing else to offer. That's when Chuck decided to find another neurologist, who was the first to mention the surgical option.
In March 1993, Chuck was referred for testing to the Medical College of Georgia, now Georgia Regents University. That May, he was hospitalized for 10 days of EEG and video monitoring for seizure activity, using scalp and sphenoidal electrodes. The procedure, in which he was deliberately sleep- and exercise-deprived in an effort to trigger "typical" seizures, suggested his began in the left temporal lobe and migrated to the right anterior temporal area. When the prosopagnosia was discovered, that would become a significant finding.
Chuck also underwent baseline neuropsychological testing to assess memory and learning, general functioning, language, visual-spatial functioning, attention and concentration, cognitive flexibility and planning. Because he is "mix-handed," writing with his left hand but performing many functions with his right, he also underwent intracarotid amobarbital assessment, better known as the Wada test, which confirmed he was left cerebral language dominant but with a significant left-to-right crossflow.
In July, Chuck returned for a week of monitoring with left and right occipital temporal depth electrodes to try to pinpoint the focus of his seizures. The monitoring confirmed seizure activity starting in the left temporal lobe and sometimes spreading to the right side of the brain.
Still, the list of potential complications associated with the procedure -- in Chuck's case, a left posterior temporal-occipital multiple subpial transection and left posterior inferior temporal-occipital resection with electrocorticography and stimulation mapping -- was long and daunting, up to and including blindness, coma, stroke, paralysis or death.
In fact, Chuck's neurosurgeon counseled Chuck, then 40, that epilepsy surgery posed greater risks for him than for the average candidate because he was "a complicated patient" and more "highly functioning" than most surgical candidates, with a white-collar job in inventory management, a stable family, a home and a large circle of friends.
But living with seizures that occurred as often as two or three a week and without warning -- at home, at work, at church, at meals, awake, asleep -- was increasingly difficult and even risky for him. One of the scariest incidents occurred when we were picking up a few items at the local hardware store on a Saturday afternoon. While our children followed me on a quest to find the right paint color for an indoor project, Chuck went to the garden section to retrieve some weed killer. I found him several minutes later in the altered state of consciousness typical following a seizure. Some minutes later, Chuck complained his mouth tasted bitter and he needed a drink of water. Instinctively, I looked at the bottle of weed killer in his hands and inspected the cap. Somehow, he had managed to open it following the seizure and swallow several ounces. Fortunately, the weed poison wasn't fatal to humans -- only nauseating -- but a concentrated form of insect repellent could have hospitalized or killed him.
Chuck and I reflected on incidents like these frequently during the months he was evaluated for surgery. We considered ourselves blessed to have two beautiful children, good jobs and a home in metropolitan Atlanta -- the middle class America dream. Were we playing with fire? Asking the right questions? Seeking a perfect world that did not exist? Could the surgery somehow leave Chuck more incapacitated than the seizures?
In early December 1993, Chuck agreed to have his name placed on the surgery schedule. "If I don't do it now, I'll be calling to get back on the schedule the next time I have a seizure," he said at the time.
When we arrived in Atlanta in 1979, Chuck had found a neurologist recommended for his expertise with epilepsy. The physician was young and energetic and served on the boards of several professional medical organizations. After experimenting over 10 years with multiple combinations of anti-epileptic drugs, however, the neurologist threw up his hands and told Chuck he had nothing else to offer. That's when Chuck decided to find another neurologist, who was the first to mention the surgical option.
In March 1993, Chuck was referred for testing to the Medical College of Georgia, now Georgia Regents University. That May, he was hospitalized for 10 days of EEG and video monitoring for seizure activity, using scalp and sphenoidal electrodes. The procedure, in which he was deliberately sleep- and exercise-deprived in an effort to trigger "typical" seizures, suggested his began in the left temporal lobe and migrated to the right anterior temporal area. When the prosopagnosia was discovered, that would become a significant finding.
Chuck also underwent baseline neuropsychological testing to assess memory and learning, general functioning, language, visual-spatial functioning, attention and concentration, cognitive flexibility and planning. Because he is "mix-handed," writing with his left hand but performing many functions with his right, he also underwent intracarotid amobarbital assessment, better known as the Wada test, which confirmed he was left cerebral language dominant but with a significant left-to-right crossflow.
In July, Chuck returned for a week of monitoring with left and right occipital temporal depth electrodes to try to pinpoint the focus of his seizures. The monitoring confirmed seizure activity starting in the left temporal lobe and sometimes spreading to the right side of the brain.
Still, the list of potential complications associated with the procedure -- in Chuck's case, a left posterior temporal-occipital multiple subpial transection and left posterior inferior temporal-occipital resection with electrocorticography and stimulation mapping -- was long and daunting, up to and including blindness, coma, stroke, paralysis or death.
In fact, Chuck's neurosurgeon counseled Chuck, then 40, that epilepsy surgery posed greater risks for him than for the average candidate because he was "a complicated patient" and more "highly functioning" than most surgical candidates, with a white-collar job in inventory management, a stable family, a home and a large circle of friends.
But living with seizures that occurred as often as two or three a week and without warning -- at home, at work, at church, at meals, awake, asleep -- was increasingly difficult and even risky for him. One of the scariest incidents occurred when we were picking up a few items at the local hardware store on a Saturday afternoon. While our children followed me on a quest to find the right paint color for an indoor project, Chuck went to the garden section to retrieve some weed killer. I found him several minutes later in the altered state of consciousness typical following a seizure. Some minutes later, Chuck complained his mouth tasted bitter and he needed a drink of water. Instinctively, I looked at the bottle of weed killer in his hands and inspected the cap. Somehow, he had managed to open it following the seizure and swallow several ounces. Fortunately, the weed poison wasn't fatal to humans -- only nauseating -- but a concentrated form of insect repellent could have hospitalized or killed him.
Chuck and I reflected on incidents like these frequently during the months he was evaluated for surgery. We considered ourselves blessed to have two beautiful children, good jobs and a home in metropolitan Atlanta -- the middle class America dream. Were we playing with fire? Asking the right questions? Seeking a perfect world that did not exist? Could the surgery somehow leave Chuck more incapacitated than the seizures?
In early December 1993, Chuck agreed to have his name placed on the surgery schedule. "If I don't do it now, I'll be calling to get back on the schedule the next time I have a seizure," he said at the time.
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.
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.
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: http://bit.ly/FQHtwD. 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.
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: http://bit.ly/FQHtwD. 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.
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