Saturday, February 16, 2013

Traveling in a Vacuum

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.

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.