Memories don't make me who I am. That's what I learned from amnesia

This First Person column is the experience of Michael Dalla Costa who lives in Calgary. For more information about CBC's First Person stories, please see the FAQ.

I dug through a folder of old photographs searching for something to tell the story of me.

A snapshot of the Golden Pavilion in Japan where I lived for seven years. Exploring the passage ways of Angkor Wat, walking the Great Wall of China and a photo of the eerie coat of arms in Sedlec Ossuary in the Czech Republic.

These are times that should be memorable. But I feel nothing. I feel as detached from those images as if they were mass-produced photos used to fill frames in a drug store. I know I was there — I have the photos to prove it — but the memory is gone.

For roughly 10 years, I've suffered from a form of amnesia, which in my case means having no long-term memories — or at least not in the same way that others do.

But it's OK; I work it out and it's taught me something about our ability to relearn, adapt and grow.

The problem started when I was 34. I was recently divorced and living in Tokyo, where I had a grand mal seizure in a subway station on my way to work. That's the classic seizure — loss of consciousness, violent muscle contractions. I ended up in the hospital. Within months, I flew back to Calgary to be with my family. Here in Canada, I was diagnosed with temporal lobe epilepsy.

This memory issue may be a consequence of that seizure, my medication or the partial seizures I still have — caused by the cavernomas or abnormal blood vessels that medical scans found in my brain. Or it could be all three of those.

The term that seems to best describe it is severely deficient autobiographical memory (SDAM), but I haven't been tested for that. Basically, I still have good long-term semantic memory — the memory of facts and conceptual knowledge — but the episodic memory or the memory of experience is almost nonexistent. 

Despite all that, I live a fairly average life.

I live in downtown Calgary because I cannot drive; I like walking most places anyway. My sense of direction is terrible, and if I haven't been somewhere in a long time, it is like seeing it for the first time. But I also can rewatch movies and TV shows without remembering what happened, which isn't so bad. 

I try to own as little as possible and know where each pot, pan and food item should be in my kitchen. Colour-coded closets and theme-based containers help. But even with having so little and being so organized, I still often forget what I own. The amount of clothes, shoes, food and other random impulse buys I have in duplicate is kind of embarrassing.

I didn't lose any skills, such as cooking, so I can take care of myself and can keep working. I work at a telecommunications company and I work hard to clearly document things to find past interactions. As for the skills involved in the job, I gain skills through practice and I don't forget them the same way I forget experiences.

I even went back to school for a second degree in adult education. I thought it might be a waste of money, but I took copious notes, read and reread assigned articles weekly and participated in class discussions. I got through it, and I am both surprised and proud of it.

When I meet people, I remember them better by noting unique facts about them such as a former colleague who used a standing desk when few others did. 

But I know I sometimes hurt people by not remembering who they are or a special date in their life or by being indifferent to a shared past, like the fun activities we once did together. But I can't have warm feelings toward something or someone I can't remember.

In these cases, ignorance is not bliss.

Because of this, I am more of a hermit now. My life is focused on living in the present and I think I am too weird or complicated for dating or meeting new people.

My friends and family are mostly understanding of my eccentricities, though some have joked that I am just making this all up. I think it's because of the way amnesia is portrayed in the media and they question why I still remember some things but not others. I ask myself the same questions.

But I know they love me and I've learned love is not just based on memories. It's a feeling in the present that we share. They help remind me of my past, what I have done and who I was; I genuinely appreciate them for this.

So, what is my story? I can honestly say I do not really know.  

Like those pictures, my life is missing the details and richness of its experience. But I've learned that I am more than my past. I am the feelings, thoughts and the actions of the present. It's who we are today that matters most.

If I try to stay kind to myself and others, I can generally get by just fine.

Telling your story

As part of our ongoing partnership with the Calgary Public Library, CBC Calgary is running in-person writing workshops to support community members telling their own stories.

This workshop ran out of the Central Library in partnership with the Women's Centre of Calgary and was called coping with adversity. To find out more, suggest a topic or volunteer a community organization to help host, email CBC producer Elise Stolte or visit cbc.ca/tellingyourstory.