Surgery left me unable to recognize even my family's faces. But in some ways, I see better now

This First Person column is written by Tracey Schaeffer, who lives in Port Moody, B.C. For more information about CBC's First Person stories, please see the FAQ.

It was a beautiful Vancouver spring morning as I walked with my roommate. We had been close friends since high school and I wanted to take my time. But in the blink of an eye, we arrived at the Vancouver General Hospital. My friend held the door open but I paused to let the image of green trees juxtaposed against the rich blue sky and puffy round clouds sink in. It turns out that this memory was the last image that my brain would ever preserve.

That was almost 20 years ago.  

Earlier that year, I had made the agonizing decision to have surgery to remove a benign, almond-sized tumour from my brain. The surgeon had warned me that there was a high risk of memory loss, but it seemed worth the risk to stop the seizures that had plagued me since birth. 

When I woke up from surgery, I felt like I was in a fog. The nurses and staff disappeared from my memory the instant they left my hospital room. Upon returning home, I felt lost. Objects and people drifted in and out but nothing attached to memory. I couldn't walk in a straight line without watching my foot as it landed, because I couldn't remember the shape of the floor against the wall. 

The first dinner party I attended post-surgery overwhelmed me. The guests were just a collection of eyes and mouths. I couldn't tell anyone apart unless they had a unique feature, such as darker skin or they were exceptionally tall. Only my roommate was familiar. She anchored me.

When I asked my doctors about these symptoms, they recommended a wait-and-see approach. I was never diagnosed officially with facial blindness but as time went on, things weren't getting better. I realized that I needed to adapt. My verbal memory was unaffected by the surgery, so I created a system where I use words to describe everything about the people that I meet and the world I see. I build intricate mental lists of the physical attributes, idiosyncrasies and fashion choices for everyone in my life. 

But I can't put everything I view into words and even with all my lists, recognizing someone is never automatic or instinctive. Today, when I meet someone, I will forget their face as soon as they leave my sight, so I can only ever offer up my best guess as to who someone is, even people I've known for years.

Through time, I learned to accept that I can't experience the world the same way as others do. 

But where my disability poses a challenge in recognizing others, it also helps me see my loved ones in unique ways. I can't waste time on what people look like because I know that information won't stay with me. I focus on understanding their heart.  

I met my husband, Steve, four years after the surgery. When we started dating, I wanted to seem "normal" so I hid my challenges. I put my energy into trying to memorize his face because I wanted to appear as though I could recognize him. But I couldn't physically do it and gave up pretending. Instead, I focused on what made him him, and Steve became real to me. Within weeks I knew that we were going to be together forever. We've been married for 12 years and I still can't pull his face up in my memory. Yet, he only needs to utter a sound for me to recognize him completely. 

This is how I also try to "see" everyone now. I look for patterns of speech and tenors of voices or I study how people prefer to move their bodies to show how they feel. All this information goes onto my lists. Studying people helps me predict who they are by allowing me to understand what makes them unique. But it's not 100 per cent effective.

I struggle daily with the invisibility of my challenges. When a friend tries to greet me on the sidewalk, how do I say that I have no idea who they are? I fear being recognized, not because I don't want people to know me but because I don't know if I know that person. 

As I age, the number of things that I can recognize are dwindling. My memory is anchored to the images from my life before surgery and they are vanishing with time. Neighbourhoods get redeveloped and the faces of old friends change. My high school friend — the woman who took me to the hospital for my surgery — no longer triggers the spark of recognition that I used to be able to count on. I've also become a stranger to myself because the face that reflects back in my mirror no longer matches the image of me that my brain has preserved from 2004. Time has jumped forward but my memory hasn't. I'm starting to forget how it feels to recognize something.

But, this is my life now, and my story can't be a tale of regret. 

My brain surgery freed me enough from a life of seizures to fall in love, get married and have two magnificent children. And even though I might never recognize my incredible family, rest assured I've memorized every nook, pimple, dimple, crack and cranny of their beautiful faces and I truly know them. 

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