June 22, 2017

Dear World,

Exactly one year ago I was lying in bed in my parents’ North Vancouver condo when my calf cramped up, I blacked out, and my world spun out of control.

Twelve months later, I’m sunken into an armchair in a house in East Vancouver, listening to Spotify while Mewcha quietly roams the many rooms. I am so comfortable that it either seems like I imagined that night last June, or it’s my current situation that’s a dream. It doesn’t seem like both experiences can exist within one lifetime.

How did I end up here?

When I look back at the past year, the present feels impossible. It’s hard to describe the moments of mental and physical paralysis and the utter inability to speak or think properly that I went through during the worst of my experience with Anti-NMDA Receptor Encephalitis.

There were times I didn’t believe I was still part of this world. So to find myself planted here, so firmly in this reality, feels like a wonder of circumstance, the most unlikely alignment possible.

I survived. But it’s more than that. I’m moving past mere survival and I’m actually living.

In the past month, I’ve been spending more and more time easing back into work. Dario took a one-way flight to Vancouver and we moved into my grandparents’ former house in the city. I’ve spent time away from Vancouver, adventuring on the Island and going up mountains in Whistler.

As we dragged surfboards out of the Pacific a couple of Sundays ago, my best friend asked me if I’d managed to successfully catch a wave. “Negative,” I said. “But eight months ago I was in a wheelchair, so I think that counts as progress.”

The sun is hot and everything is vibrating with new beginnings.

Two of my best friends graduated from university recently. One moved across the country. I brimmed with pride watching them cross the stage and I thought about my own graduation two years ago and the places I’ve lived and experiences I’ve had since.

Unlike when I finished high school, I spent the morning of my university graduation panicking about my future. I didn’t know whether I wanted to go to grad school in Amsterdam or stay in Toronto to work as a journalist. The morning before the ceremony, I called my mother and paced back and forth in bare feet and she gently asked if it would be better for me to just come home to Vancouver for a while.

I ended up spending almost a full year in Toronto before moving back to the West Coast. Two months later, some glitch in my immune system flung me into illness like a rag doll tossed into a tornado.

Last night, I found a notebook that I’d used during my time in the hospital, but had since forgotten about.

Most of the scattered, fragmented words make no sense to me now. But a few particularly raw lines sent a surge of feeling through me. It wasn’t that I remembered writing them, but that I suddenly felt a ghost of the overwhelming distress, confusion, and hopelessness I experienced at the time.

I want to go home? (sic) I wrote. What needs to happen before I can go home?

And now I am home. A house that’s new to me, but still smells like my childhood, like Chinese medicine and moth balls.

About a month ago, I told a specialist that I was finally reaching a point in my life when I had more to talk about than being sick. I can now carry full conversations without needing to explain what Anti-NMDA Receptor Encephalitis is. There is enough going on in my life that I have interesting things to say and new, positive experiences to share with loved ones or accomplish on my own.

Because of this, I hesitated to write today’s blog. But I also felt like I needed to do something to mark the end of this year from Hell. It’s not that I’ll never speak or write about these experiences again, but I hope that, moving forward, there will be new fodder for future writing.

A co-worker asked me the other day if I felt like I’d finally come full circle. As we spoke, however, I realized that I didn’t want to be back to where I started.

I am who I’ve always been, but I’m also not who I was a year ago. I’ve learned a lot about myself and the world. I’ve witnessed the extreme generosity and care that humans can extend to others. Sometimes, I think about the time I broke down in tears on the Seabus last summer and, rather than drawing judgmental stares, I attracted a small circle of kind and concerned passengers, including a nurse who talked me down.

And maybe most importantly, I’ve learned just how strong I really am. How my ability to overcome is rooted deep in my bones, nourished by the people I love but also capable of fueling itself.

So I haven’t come full circle. I’ve spiraled forward. I’m somewhere new and uncharted and scary and exactly where I need to be. And the path from here on might still be wonky and twisted, but for at least a little bit, I can see straight ahead.

It shouldn’t be possible, but it’s true.

Emily

 

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