Memories don’t make me who I am. This is what I learned from amnesia

This first-person chronicle is the experience of Calgary-based Michael Dalla Costa. For more information on CBC’s First Person Stories, please see the FAQs.

I dug through a folder of old photographs looking for something to tell my story.

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

These are moments that should be memorable. But I don’t feel anything. I feel as detached from these images as if they were mass-produced photos used to fill frames in a pharmacy. I know I was there – I have the photos to prove it – but the memory is gone.

For about 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 as others.

But that’s OK; I’ve been working on it and it taught me something about our ability to relearn, adapt and grow.

The problem started when I was 34. I had just got divorced and was living in Tokyo, where I had a seizure in a subway station on my way to work. It’s the classic seizure—loss of consciousness, violent muscle contractions. I ended up in the hospital. A few months later, I returned to Calgary to be with my family. Here in Canada, I was diagnosed with temporal lobe epilepsy.

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

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

Despite all that, I live a pretty average life.

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

I try to own as few as possible and know where every pot, pan and food should be in my kitchen. Color-coded closets and themed containers are helpful. But even with so little and being so organized, I still often forget what I have. The amount of duplicate clothes, shoes, food, and other random impulse purchases I have is quite embarrassing.

I haven’t lost any skills, like cooking, so I can take care of myself and keep working. I work at a telecommunications company and work hard to clearly document things to trace past interactions. As for the skills involved in the job, I acquire skills through practice and I don’t forget them in the same way that 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 lots of notes, read and re-read assigned papers weekly, and participated in class discussions. I got out of it and I’m both surprised and proud of it.

When I meet people, I remember them best by noting down unique facts about them, like 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 lives or by being indifferent to a shared past, like the fun things we once did together. But I can’t have warm feelings towards something or someone that I don’t remember.

In these cases, ignorance is not bliss.

For this reason, I am more of a hermit now. My life is centered around living in the present and I think I’m too weird or complicated to date or meet new people.

My friends and family mostly understand my eccentricities, although some have joked that I’m just making it all up. I think it’s because of the way amnesia is portrayed in the media and they wonder 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 that love isn’t just based on memories. It is a feeling in the present that we share. They help me remember my past, what I did and who I was; I sincerely appreciate them for that.

So what’s my story? I can honestly say that I don’t really know.

Like those images, my life lacks the detail and richness of its experience. But I learned that I am more than my past. I am the feelings, thoughts and actions of the present. It’s who we are today that matters most.

If I try to be nice to myself and others, I can usually do just fine.

Tell your story

As part of our ongoing partnership with the Calgary Public Library, CBC Calgary hosts in-person writing workshops to help community members tell their own stories.

This workshop was held out of the Central Library in partnership with the Women’s Center of Calgary and was called Facing Adversity. To learn more, suggest a topic or ask a community organization to help host, email CBC producer Elise Stolte or visit cbc.ca/tellingyourstory.