Making plans

Dear World,

Sunday night and I’m sitting on our grey Ikea couch, Dario less than a hand-span away. The air is heavy with the smell of just-struck matches and the fir-scented candle we picked up this afternoon in a little souvenir shop in Steveston. It’s all very “hygge”— the trendiest word of the past year, meaning something along the lines off “a feeling of coziness.”

I feel like, after nearly two years of extreme imbalance, I’ve reached a fragile equilibrium. Somehow, I’ve found my way back to a sense of steadiness that felt impossible even a few months ago.

I know that life is good right now because I keep making plans.

Last month, in the span of a week and a half, I booked up my vacation time for the year.

I bought a plane ticket to Paris to meet my parents in August, then a pit stop in Toronto, on the way back west, so that I can sleep on Kirsty’s couch and celebrate my dear friend Karly’s wedding.

A few days later, Dario and I walked into a Burnaby dealership and bought a car: a mid-2000s Toyota that we’ve named “Mura-Camry,” an homage to one of our favourite authors.

In our first week as car-owners we booked an Airbnb in Portland for Easter long weekend. Then we sat at our kitchen table and watched YouTube videos of a skinny fish monger exploring the weird and wonderful food options the city has to offer.

Finally, we crossed an item off my bucket list and booked a trip to Hong Kong for May. It’ll be my first time in China. I wonder if I will recognize any of myself there.

In between, I’ve been spending Monday to Friday writing about orcas and recording interviews for a podcast (which you can listen to here!). Every day, I feel more settled in my Chinatown office, more confident in my work and a growing sense of gratitude that I get to spend my days doing something I find meaningful.

Of course, reconciling my environmentalism with buying a car is a bit of a challenge, but we’ve pledged to do our best not to use it unnecessarily, to continue transiting to work and downtown, and to do our best to use this new-found freedom to access and appreciate the incredible nature just outside the city limits.

As we plot more distant escapes from the city, we’ve been using weekends for smaller excursions.

A few weeks ago, in a bout of sunshine, we drove to Deep Cove and hiked up to Quarry Rock. I pointed out red cedar trees as we passed by and wrapped my arms partway around a designated heritage tree.

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Two weeks ago, we drove out to Tsawwassen and sat in a stranger’s living room, just feet away from musician Tim Baker. He tested out some new songs in front of a crowd of about 30 people and kept forgetting the lyrics. It was all beautiful anyway.

And this weekend we sat in a coffee shop in Steveston and talked about how free we are right now.

I feel like I’ve entered a sweet spot in the timeline of my life. I’m young and healthy (now) and I’m spending my weekdays at a fulfilling job that pays just enough to let me spend my weekends and vacations on mountains and in coffee shops.

I’m not tied to student loans or a mortgage. I have Mewcha, our overly-affectionate cat, to look after, but he is well worth the small responsibility. For what might be the first time in my life, I’m focusing more on enjoying the present and near-future and less on worrying about what comes next.

When I told Kirsty about all the plans I’ve been making, I joked that, after nearly dying, I feel like I want to just enjoy myself for a bit. I was kidding, of course (humour can be a much-needed coping mechanism), but there was truth to it.

I repeated the sentiment last weekend, over a cup of tea with a friend I hadn’t seen in a while.

She told me that, after living as a refugee, winning a scholarship to study in Canada, spending years working to bring her family here, and, finally, welcoming them last year, she felt like she was in a place where she could just focus on herself.

“I feel like I know now that I can start over and it’ll be okay. It doesn’t scare me anymore,” she told me.

I can’t come close to imagining the circumstances she’s endured and overcome. But what she said about this moment in her life resonated with me.

I lost myself and, in a different way, I too rebuilt myself.

And now, I’ve found this sense of stability and I just want to enjoy it.

If I’m lucky, there will come a time to plan more than vacations and my next meal.

There will be the stress of hunting for new apartments and the terror of jumping headlong into new career opportunities and, maybe, the anticipation of applying for school again somewhere.

And while I hope that there won’t be the devastation of a relapse, I know that, at some point, there will be the pain of more losses. That’s inevitable.

But for now it’s hygge Sunday evenings and sunshine drives and the promise of plane tickets across two different oceans.

I don’t know how long it’ll last, but I want to revel in every moment of it.

Love,

Emily

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Day 5 – The Met, the New York Times Building + New Year’s Eve

Dear World,

It’s 8:02 a.m. on January 1, 2018.

I’m sitting at La Guardia Airport, watching the terminal TVs flash reruns of the ball dropping in Times Square and I can’t help but feel a small optimism about what’s to come.

I spent my final day of 2017 at the Metropolitan Museum, wandering the exhibits while, outside, the city marked the second-coldest New Year’s Eve ever recorded (the first was in the early 1960’s).

I started the day by braving the -13 (-17 with windchill) temperatures for a walk to Pick A Bagel, where I ordered a blueberry bagel with cream cheese but received a plain bagel with cream cheese instead. Oh well. Still a hearty start to the day and a brief reprieve from the wind.

Snowy Central Park

Snowy Central Park

From there, I took the subway to near the museum of Natural History, on the east side of Central Park, and cut across the park to the Met, on the western edge. The Great Lawn was encrusted with a thin layer of snow from the day before. A few packs of brave joggers ran past me, sticking closely to the salted paths.

I arrived at the museum about a half hour after opening, paid my by-donation fee, checked my coat and made a beeline to the European painting section, assuming (correctly) that that would be home to some of the museum’s best-known works.

I immediately found myself in a room of Monets. After making a round, I continued into a room with a number of van Gogh paintings. It was interesting to see his paintings after recently watching the film Loving Vincent, which gave me a better understanding of his tumultuous life and the characters he chose to paint.

After looking at some work by Degas, Renoir and Manet (among others), I began to feel myself already fading. I was desperately thirsday, as well, so I went in search of a drink and ended up ordering a coffee (the bottled water was too pricey) to sip on a balcony overlooking the main hall, which was now filled with hundreds of people.

I couldn’t take my drink into the gallery areas, so I decided to take my time people watching and catching up on my travel journal.

After a leisurely 45 minutes, I felt ready to venture back into the fray, wandering through the European sculpture section, contemporary art, Egyptian artifacts (the seven-year-old inside of me was nerding out), and Asian art sections.

There were some really incredible sculptures, including one in the European section of an anguished father, gazing upwards as his sons clawed at his feet. The description said he was inspired by a character in Dante’s Inferno, who was locked away with his sons and forced to decide between starvation and cannibalism. The sign did not say which option he took.

In the Asian art section was a beautiful statue of a Bodhisattva, sitting in “Water Moon” form, her arm draped gracefully across her knee. More and more I think I’m drawn to these types of depictions, perhaps recognizing something of myself in the round, open faces and small, drawn lips.

After five hours inside I was hungry and tired and though there was, of course, more to see, I knew it was time to head out. Besides, there were still two key New York experiences I wanted to cram in before heading back to Ophira’s for the evening.

I didn’t have to go far for my first mission. I’d already scoped the area out ahead of time and headed straight for the Nathan’s hot dog stand outside the entrance to the museum.

I ordered a hot dog and fries, noting the fact that the contents of the bottles of coke on display outside the cart were frozen solid.

I scarfed down my meal on the corner before pulling my gloves back on and walking to a bus stop.

 

After some minor confusion (on my part) and impatience (on the bus driver’s part) ver the fact that I couldn’t just swipe my metro card like I did in the subway, I boarded and took a brief ride to a subway station, then transferred to a south-bound train.

By this time it was getting late and I debated going straight to the Calof’s, but nobody’s ever said I lack ambition so I opted for one last pit stop: The New York Times building.

Unfortunately the inside was closed to the public (I read online that you can usually visit the lobby, but didn’t realize that was only open on weekdays), but I still got a small thrill looking up at the structure.

Maybe some people feel that standing in front of the NASA or Google headquarters (which I also saw the New York version of), or the White House or Parliament, but for me, the New York Times building has always symbolized the peak of my dream profession, where the best writers with the best news judgment find a home.

Nick Kristoff works there. David Carr once did. And even though I’m not in journalism anymore, per se, the dreamer in me still wonders if I’ll ever see my byline in the most reputable publication on earth.

Fired up after that one final excursion, I transited back to Ophira’s, where she was waiting, cozied up on the couch under a blanket. We ordered Thai takeout, sort of a tradition of ours, and feasted on spring rolls, pad thai (for Ophira) and glass noodles (for me) while watching the Disney movie Moana.

Her parents left to meet some friends for dinner around 7:30 and we stayed in to talk and watch Youtube videos and split a cupcake and pour some wine and cider.

We were about half an hour into Bridget Jones diary (inspired by a list of the top “New Year’s movies”) when our girls’ night was interrupted b her parents and their friends — a fast-talking local couple. The man said he’d lived in New York for “a while now…70 years.” And while I’d been enjoying our low-key night of indulgence, it was also New Year’s Eve and, in my opinion, the more the merrier.

We chatted about the highlights of my visit — The Highline and touring Williamsburg, I said — accessibility in the city, and the neighbourhood dogs, all of whom Ophira’s father know by name from his daily walks with Sirius, their family dog. We discovered that his repertoire of owner names, meanwhile, is significantly more limited.

At 15 minutes to midnight we switched off Netflix, which was still paused on a dejected-looking Renée Zellweger, and watched Mariah Carey’s comeback performance. To be honest I wasn’t too familiar with the original debacle a year ago, as I was still in the early stages of recovery back then and not too tuned into pop culture, but Ryan Seacrest seemed satisfied with her return to Times Square, declaring, “And that’s why they call her Mariah Carey.”

As the countdown on the TV came down to the last few seconds, fireworks suddenly erupted from Central Park, and we dashed to the window like the children in poem The Night Before Christmas. Meanwhile, the clock wound down on TV and the ball began to drop, slightly behind, according to the time on my phone.

Caught in the middle, I yelled, “I don’t know where to look!” But then Ophira called out “Happy New Year!” and solved my dilemma by giving me a hug.

Dario called from Ottawa but the connection was fuzzy so we just repeated “Happy New Year” and “I love you!” a few times before hanging up. Kirsty sent me a photo from Toronto, where she’d just arrived the night before, of her surrounded by Julia and Layne and company, and I messaged the Girls on the West Coast, wishing them Happy New Year from three hours in the future.

We stood by the window and watched the fireworks shatter over the skyscrapers, and then celebrated by sharing a mini-mason jar of “Empire State” cheesecake. I joked that I’d had the New York trifecta that day: bagel for breakfast, hot dog for lunch and cheesecake for dessert.

Not quite ready to call it a night, Ophira and I accompanied her dad and Sirius on a late-night walk to just within the boundaries of Central Park, just as we had on my first night in the city. Then it was back to make my bed and set an alarm for 6:30 a.m.

Too-few hours later, I said goodbye to Ophira in the morning darkness, grabbed my suitcase and new shoulder back, which Dario gave me for Christmas, and placed my red bowler hat on my head, then headed down to request and Uber from the lobby.

And now I’m en-route, back to the land of mountain air and plentiful sushi.

I’ve always loved the way that travel days force us out of our daily routines or even vacation itineraries. A few weeks ago, I had drinks with a co-worker and, in a spiralling discussion into whether we truly have free will or agency, she made a comment about how there’s no point in worrying about a plan crashing while you’re on it because once you’re off the ground there’s nothing you can do to change what will happen until you’re at your destination (unless you’re the pilot, of course).

Though you could argue there are, theoretically, endless ways we could still change a plane’s course, the basic idea stuck with me.

I think this sense of surrendering control, which is so pronounced when we cram into a plane with a hundred other passengers and watch the cities we’re leaving shrink into abstraction, is what makes long travel days such a perfect time for reflection. And to start a new year in this (literally) suspended state feels like a gift.

I am leaving somebody I love, enriched by new experiences in a new city. And I am leaving a year that has held immense challenges and, in the end, much joy and success.

I am going home, over the mountains, to a city I love (everybody in New York said I should move there, but, maybe they’re never looked, breathless, over Lake Garibaldi or at a West Coast sunset). I am going towards another year, one that I hope will be filled with more loved ones, more cities and more plane rides.

As a certain Disney character sings, “There’s just no telling how far I’ll go.”

Bring it, 2018.

Love,
Em

Sights
The Metropolitan Museum of Art
The New York Times Building

Food
Pick A Bagel
Nathan’s Famous Hot Dogs

 

Day 4 – the High Line, Chelsea Market + UCB improv

Dear World,

Sitting in what must be one of the most beautiful writing locations in the city — a balcony overlooking the main hall of the Met. I arrived here about 40 minutes ago and took a quick spin around the extensive European painting collection – pausing to absorb some pieces by Monet, van Gogh, Degas and even two by Klimt. But I felt myself fading fast and went in search of coffee. I have all day here, so I might as well pace myself.

Yesterday I woke up to a very grey skyline, bundled up, and stepped out into the snow. Luckily, after some clear-but-very-cold days, the blanket of clouds provided some insulation, raising the temperature to a balmy minus four degrees Celsius.

I took the subway to 23rd Street station and walked a couple blocks, then up a set of stairs to the High Line.

I read not to attempt the popular path on a weekend, when, according to the listicle of “10 mistakes tourists make in New York City,” locals flock to the re-imagined train tracks. But the snow was on my side.

There were only a handful of other tourists and the scene was very picturesque, the wooden slats beneath my feet and the bare tree trunks poking up between the tracks, all dusted in snow, and the skyline muted.

I headed south, planning to double back and grab lunch at the Chelsea Market. But I hit the end of the line around 10:30 a.m. — too early to seek food.

I walked down to street level, planning to poke around some shops, but ended up at the doors of the Whitney Museum. After my failed attempt to get into MoMA, it seemed like fate.

I bought a ticket and walked around a small exhibit of prints on the third floor, before taking the elevator to the seventh floor for a free tour of the exhibit there: a selection from the museum’s collection, inspired by a W.H. Auden poem and titled “Where We Are.”

The guide was a fantastic, wiry little man who kept insisting we get closer to the artwork by calling out “come on in, the water is fine!” He drooled a little trying to pronounce “synesthesia,” and had abundant stories throughout which he “paraphrased” dramatic conversations and quotations.

The rooms centered on five themes: family and community, work, home, the spiritual and the nation, and were each named after a line from the poem.

My favourite piece was a painting of smartly dressed office girls heading out in the morning during the Great Depression. “They’re dressed for success!” our guide exclaimed. But off to the left lurked a darker figure, a man in shabbier clothing who, our guide explained, was inspired by a man who would beg for money beneath the artist’s window.

After the tour I poked around some brightly-coloured large-scale paintings by an artist named Laura Owens, and an exhibit on the history of protest, which featured some bad ass works by the Guerrilla Girls, a group of feminist artists who made bold statements about gender and racial equality, particularly in the art world.

After a few hours my stomach was grumbling and I left the gallery and headed to the Chelsea Market.

It was packed inside, the long, dark hallways filled wall-to-wall with people. I walked through, looking at the huge variety of food on offer and decided that I couldn’t pass up the taco stand with the longest line. Anything that popular must be delicious, right?

I ordered an adobada (pork) taco and a nopal (cactus) taco and a tarmarindo juice and was not disappointed. In a week of good food, the adobada taco was a stand out — juicy, topped with pineapple and salsa verde, and wrapped in a perfect little corn tortilla.

tacos at Chelsea Market

Tacos + tamarind juice from Los Tacos No. 1 at the Chelsea Market.

After scarfing my food down at a standing counter by the cashier, I braved the crowds a little longer, browsing a Japanese goods store, an Italian market and admiring the other cuisines available. I was tempted to try a currywurst, but, feeling hot in my winter jacket and the crush of people, I opted for some butter pecan ice cream and people watching instead.

On my way out I grabbed a bottle of Shiraz from the Chelsea Market Wine Cellar (Australian, because I didn’t quite trust the made-in-New-York options), then made my way back to the 23rd Street subway station, stopping along the way to photograph some snowy streets and hunt for chocolate to accompany the wine on New Year’s Eve.

Unsuccessful, I stopped into the Whole Foods on the way back to Ophira’s and also grabbed some date and coconut balls and non-alcoholic apple cider for the dairy and alcohol-free members of the household.

I only had about 45 minutes at the apartment — about enough time to take my winter layers off and then put them back on again — before Ophira and I set out for dinner.

Her parents’ apartment is at the northern edge of Hell’s Kitchen, so we ventured deeper into the belly, planing to go to a Korean restaurant aptly called “Hell’s Chicken.” Unfortunately, even though Ophira had called ahead of time to ask if the place was accessible, we arrived to find a big concrete step at the entrance.

But either through dumb luck, the universe aligning so that everything can happen for a reason, or simply making lemonade, we found an Ethiopian restaurant around the corner that was warm and inviting. I love the communal experience of sharing Ethiopian food, and it was quite beautiful to get to split the platter of assorted vegetarian and lamb dishes with one of my favourite people in the world.

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Saturday night dinner with Ophira.

After dinner we hurried to the UCB Theatre for an improv show. Ophira has been studying improv in Toronto and honing her comedy chops, so she was quite excited for the experience. I was a little more wary — comedy can often strike me as too lewd or offensive — but the performers were great and so clever.

This was my first time watching “long form” improv, though I’ve seen the short form Theatre Sports a number of times back home, and I was very impressed by the performers’ ability to weave audience suggestions into a lengthy and (for the most part) cohesive narrative featuring palm trees, a bathtub, buying diapers in anticipation of waiting hours for the ball to drop in Times Square, and a mild heart attack.

After the show I was in the mood for a Saturday-night-in-New-York drink, so Ophira and I ended up at a cozy little bar called B Squared, where I down a beer and then sipped a negroni and Ophira enjoyed a cocktail. We had a lovely conversation over a shared tiramisu, and as we left to head back to the apartment just before midnight, I felt a small pang of sadness.

While I’ve enjoyed my stay here immensely, I will be ready to return to the West Coast on Monday. But the thought of having to say “see you later” to such a close friend, without knowing where or when that reunion will be, will be the hardest part of ending this adventure.

Love,
Em

 

Sights:
The High Line
Whitney Museum
Chelsea Market
UCB Theatre

Food:
Los Tacos No. 1
Meske

Days 2 + 3 – Jazz, street art, Momofuku + the Brooklyn Bridge

Dear world,

Writing as I eat again. Or rather, as I wait to eat.

I’ve tossed out any illusions of vegetarianism this trip and am sitting in a burger joint with colourful frames housing images of animal heads mismatched with human bodies. I ordered an “American burger.” When in Rome.

It’s been a busy few days, despite my efforts to slow the pace a bit today as I fight back a lingering cough.

On Wednesday evening, two nights ago now, Ophira and I ventured out into the cold to the Christmas market at Bryant Park. The setting was beautiful and the shops housed some nice looking jewellery, soap and other homemade goods, but in a preview of the seemingly endless physical barriers I’m learning that Ophira faces when she’s using her wheelchair, small ledges at all of the shop entrances prevented us from going in. We could have called somebody to bring a ramp, but that seemed like too much effort, so instead we headed for the food stalls in search of something to nibble on.

We split some delicious lemon grass and chicken dumplings, spring rolls and a pork bao for me and curry chicken bao for Ophira.

By the time we were done we were numb from the -13 degree weather so we decided to seek shelter in a cafe across the street, part of a chain that I’d first tried in a trendy area of Mexico City.

We shared lemon and raspberry tarts and I drank a latte while Ophira warmed up with an apple cider that she gave rave reviews. Then we lucked out and managed to secure an accessible Uber to Dizzy’s Club Coca Cola — a legendary spot for jazz — to meet Ophira’s parents and brother.

I was impressed (and left feeling a tad under-dressed, even in my favourite lipstick) by the swanky setting, with a darkened Central Park and city lights in the background. An incredibly talented octet played some Dizzy classics with great energy and I sipped on a syrupy Earl Grey cocktail and reveled in the moment.

It was the type of place I probably never would have ended up in on my own, and I was so excited and grateful to get to join the Calofs for the experience.

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Jazz at Dizzy’s Club Coca Cola

I had another early morning yesterday, heading out for the subway at about 8:50 a.m. to try to make my 9:45 a.m. walking tour of street art in Williamsburg. After navigating the subway (quite successfully, if I do say so myself), I emerged at the corner of Bedford and North 7th, and was instantly charmed by the area.

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Williamsburg

I grabbed coffee and a croissant in a cute Swedish coffee shop with an even cuter barista (sorry, Dario), then crossed the street to meet my guide for the morning, Mar, and a group of 20 or so tourists from Australia, China, and the next neighbourhood over.

Mar took us on a toe-numbing two-hour tour of the area, giving us a run down of street art terminology, name dropping artists and providing an overview of the neighbourhood’s history and how it became a hub for artists.

My favourite piece was a mural of a stylized, vaguely Japanese-looking woman by a South African artist who Mar said grew up traveling the world with his mother, who also did street art. I also liked some of the posters playing on high fashion, a mural with a series of skulls inspired by other artists, and works by an artists that calls himself B.D. White.

There were also lots of political caricatures of Trump and plays on MacDonald’s and Canada Goose ads.

Mar had a background in film and liked to wax poetical about how most people don’t pay attention to or appreciate the art around them. It was a little dramatic at times, but for the most part I enjoyed his insights and appreciated him pointing out pieces and techniques I wouldn’t have otherwise noticed.

After the tour I wandered some of the boutiques in the area and took a frigid detour to the edge of the water. By the time I turned back towards the subway station I was freezing cold and hungry.

I stopped into a quiet place called Salt + Charcoal, lured in by its poetic name and the little bouquets of white flowers on the wooden tables. I ordered a tuna poke and miso soup, which was warm and studded with sesame seeds. The presentation was beautiful.

I took the subway back to the apartment and lay down for an hour or so, trying to get comfortable enough to trick my body into sleeping between bouts of coughing. We stayed in for dinner — a delicious chicken shawarma that Ophira’s mother made in her beloved Instant Pot — and then Ophira and I got dressed for the theatre!

While I was out touring Williamsburg, Ophira and her mother had managed to nab us tickets to see the play “Once on this Island” — a Romeo-and-Juliet-esque musical set on an unnamed Caribbean Island.

We walked and wheeled from West 59th and Ninth to West 50th and Eighth, where we picked up our tickets and then were escorted to the lobby by a woman who called us “ladies” every five words or so.

After walking outside and around the corner from the main entrance, down a long hallway and then up an elevator, we finally reached the holding area outside the theatre (otherwise only accessible by a set of stairs).

Finally, we settled into our seats. We were in the furthest row back, but the theatre was so small (not at all what I’d expected) that we still felt close to the action. Down below, the set was covered with a sandy floor and a pool of water. Actors, a live goat and a chicken milled about and interacted with audience members in the front row.

The play told the story of a young peasant girl who, thanks to some meddling gods, falls in love with one of the upper-class Frenchmen on the island.

Ophira and me at the theatre

Best friends do Broadway.

The sets and costumes were fantastic, and I especially loved the storm scenes, when the lights shifted to give the illusion of being submerged and real water poured from the ceiling, soaking the male lead after a dramatic car crash scene. And though the story lacked some nuance in tackling its themes of racial and social divides, I did enjoy the singing, dancing and vibrancy of it all. And, as I said to Ophira, she may be a veteran when it comes to attending Broadway shows, but for others (including me), seeing a show like that is a once-in-a-lifetime, bucket-list experience.

This morning I let myself sleep in, vowing to take it easier after having trouble getting to sleep the night before, due to my pesky cough. Ophira and I left the apartment at about 10:45, 45 minutes before we were scheduled to meet her brother, Ethan, and his two friends at the legendary Momofuku Noodle Bar.

We attempted to call an Uber from the lobby but there were no accessible cars available so instead we resorted to the (more costly) accessible taxi line. After more than half an hour, a car finally pulled up to the corner where we were waiting in the cold. However, the driver couldn’t figure out how to pull out the ramp for Ophira to enter through the back doors.

Already exasperated and chilled, I asked him to call another cab for us, but instead I heard him on the phone asking for instructions on how to unfold the jammed ramp. Ophira called the taxi line back and I waded into traffic to try to hail another cab.

After several unsuccessful tries, one finally pulled over to the curb, but the driver insisted we call the main line again because he said there was some type of bonus for answering a call instead of just picking us up off the street.

It was at this point that I began to shout and use words like “ridiculous” and “unacceptable.” He back-pedalled quickly and backed the car into place so Ophira could get in. All in all it took more than an hour to secure our transportation.

This meant that we were both greatly relieved to enter the warmth of the famous Momofuku Noodle Bar. We met Ethan and two of his friends, who were only making a quick stop for some pork buns before continuing a self-guided “food tour” of the city.

Unfortunately I was poor company, having been hit with a coughing fit that lasted about half the time they were there, but a bowl of the restaurant’s signature ramen — packed with springy noodles, pork shoulder and belly, nori and a poached egg all swimming in broth — soothed me. Ophira ordered chicken pho and we lingered over our noodles for a while after Ethan and company left.

Then it was out into the cold to make our way to The Strand, the famous bookstore with the motto “18 miles of books.” I am an ardent bookstore lover, but the volume of crowds and books was overwhelming, even for me. Still, I managed to sink into that meditative state of browsing back covers for the perfect read, coming away with two books (one for Dario and one for me), a little souvenir for Mum, and a few additions to the ever-growing “to-read” list on my phone. Ophira was also successful at buying some small gifts for friends.

After The Strand we popped into a coffee shop for another cider (for Ophira) and latte (for me). Ophira called a cab from there and I set off to subway to the Brooklyn Bridge, since I had misjudged distances and failed to make it there after my tour of Williamsburg the day before.

It was a race against time to make it there before dark, made worse by the fact that I first boarded a train in the wrong direction, and then took a wrong turn when I exited the station in Brooklyn. But in the end I was rewarded with a perfectly-timed sunset dash across the bridge — the cold, the pink sky, and the silhouettes of the Manhattan skyline and distant Statue of Liberty stealing my breath away.

Rather than walking all the way across the bridge, I turned back part way with the idea that I’d find a cute spot in DUMBO to grab food. But while the neighbourhood was indeed full of charming looking restaurants, I began to worry about having enough time to take advantage of free Friday night entry at MoMA, so I opted to take a train back into Manhattan instead.

As it turned out, I needn’t have bothered rushing. Even though I arrived at the museum more than three hours before closing, there was a line around the block and the crowds inside were so dense that I decided to save the visit for a future trip.

Feeling a little aimless, I sought warmth in the food court under The Plaza and splurged on a slice of matcha mille crêpes from Lady M Bakery, one of my friend Michelle’s recommendations for the city. The delicate layers, sandwiching creamy green filling and dusted with matcha powder on top, did not disappoint.

With a dwindling phone battery, I looked up restaurants in the area and settled on a casual burger spot for my post-cake dessert. Which brings me full circle on this entry.

Until tomorrow,

Emily

Sights:
Bryant Park
Dizzy’s Club Coca Cola
Free Tours By Foot walking tour of street art in Williamsburg
Once on this Island
The Strand
The Brooklyn Bridge

Food:
Salt + Charcoal
Momofuku Noodle Bar
Lady M
Bareburger

Souvenirs:
The Strand

 

 

Day 1: Central Park, Fifth Avenue + Times Square

Dear World,

Sitting in a little Mediterranean restaurant in Hell’s kitchen, warming up before venturing back outside.

I’ve had an ambitious first morning in New York. I woke up early and peeked out below the blinds in the Calofs’ living room, where I spent the night on the couch, and was rewarded with a spectacular view across the Hudson to New Jersey — where I actually ended up on a misguided Uber ride last night.

View from the Calofs' apartment.

View from the Calofs’ apartment.

I lingered in bed for a bit, wrapped snugly in a sleeping bag and a Detroit Red Wings blanket, then got up when Ophira’s mother came out of the master bedroom.

Ophira is conserving her energy this week as she continues to recover from a recent fall and cope with the various symptoms of her chronic illness (she tells it best on her blog), so the loose understanding is that I’ll be exploring solo in the mornings while she rests, and then we’ll venture out together for an afternoon or evening activity each day — supplemented by some quiet quality time in the apartment, I’m sure.

I left at about 8:30 a.m. this morning, eager to get out and explore. I arrived after dark last night and couldn’t get a good sense of my surroundings, but Ophira’s mother gave me a quick rundown of the area surrounding their 48th-floor apartment right beside Columbus Square (at the south-west corner of Central Park).

My plan was to wander the park and make my way east to Fifth Avenue, then do a sort of loop back to Ophira’s.

Instead, guided by my stomach, I decided to head north in search of Zabar’s, a deli that a friend from J-school had recommended to me.

I walked about 20 blocks, cutting diagonally along Broadway in the cold, clear morning air. No snow on the ground, but icy enough that a girl took a tumble on the sidewalk beside me. I knelt down to give her a hand up and, luckily, after asking me if there was any blood on her face (there wasn’t), she was on her way.

Zabar’s is a little shop with busy signs advertising a too-long menu and people crowding the high-top seats and waiting in line.

I ordered a bagel with cream cheese and smoked salmon, delighted by the accent of the guy in front of me, which sounded like Dario’s imitations of gruff “New Yowk-ahs.” The bagel was delicious: thick and sweet with a heavy smear of herb cream cheese and oily slices of smoked salmon.

There was a photo on the wall of the owners beside a piece of street art by Banksy, so I quickly googled the piece, Hammer Boy, as I ate my breakfast, and saw that it was only a block and a half away. I stopped by for some photos before continuing past the Museum of Natural History and cutting into Central Park.

 

Considering I was wandering aimlessly, I managed to stumble upon a number of unmistakable icons — the Bow Bridge, the Cherry Hill Fountain (which I dubbed the “Fake Friends Fountain” because it is often mistaken for the one in the intro to the 90’s sitcom. Unfortunately the real one is on a studio lot in California), and The Mall. But then again, maybe that’s just Manhattan. Everything is famous.

 

I enjoyed scrambling up rocks and pathways to take too many photos over the lake and south to the skyline, and called into a free phone line to listen to a couple of audio clips about the park, narrated by celebrities and public figures. No matter which landmark I was looking at, the clips seemed to describe every location as one of the most “romantic” spots in the city, though to be honest, my fingers, toes and nose were too numb to imagine getting very steamy in the park.

I skipped Strawberry Fields (by the time I thought of it it was too out of the way) and exited the park on Fifth Avenue, back on track for my original morning plans after my Zabar’s detour. Feeling cold and a little concerned about frostbite (unnecessarily, I’m sure), I ducked into the shops under the Plaza and admired the mille crêpe cakes at Lady M, considering whether 10 a.m. would be too early to indulge. I decided to save it for a later time and went back above ground, headed for the window displays at Saks.

Along the way, I got sidetracked at the Uniqlo flagship store. If anybody asks, I was warming up and grabbing extra socks since I’m quickly forming blisters…but I may have just happened to come away with a t-shirt for Dario and one for me from the store’s collaboration with MoMA. Probably a better deal than the museum gift shop, right?

From there I admired the moving Snow White Christmas displays at Saks, waded through the crowds to take some photos of the giant tree and Rockefeller Center, and then walked down to Times Square.

 

By that time I was beginning to feel ready for food and heating again, so I only stayed long enough to take a few photos, carefully cropping out the women in star-spangled thongs playing guitars and encouraging tourists to pose with them (I don’t know how they were warm enough to keep working).

Then I walked past a number of Broadway theatres to Hell’s Kitchen, down a street lined with basement and first floor restaurants advertising French food, sushi and tapas on faded red awnings and reminding me on Montreal.

When I hit 9th Avenue, I pulled out my phone to see what was in the area, and was convinced by a 4.6 star rating to try the Mediterranean place across the street, Tabouleh.

I just scarfed down a lamb flatbread (and realized that between my vegetarian slide at the airport in Toronto and New-York-Style piece last night, I’ve effectively eaten pizza for three out of my last four meals) and now I’m sipping on a San Pellegrino and bracing myself for the 10-minute walk back to my home base.

But I have a wonderful friend awaiting me there and that’s the best, warmest welcome there is.

Love,

Emily

Sights:
Hammer Boy
Central Park
Saks Fifth Avenue
Rockefeller Center
Times Square

Food:
Zabar’s
Tabouleh

Souvenirs:
Uniqlo and MoMA collaboration

Thanksgiving, 2017

Dear World,

It’s Thanksgiving, 2017.

I’m sitting barefoot, 5 p.m. light streaming in through the window, the tree across the street ablaze in red leaves. Within two hours, it’ll be dark.

The house in which Dario and I are living — a lumbering Vancouver Special that once belonged to my grandparents — is quiet. He’s at work. Mewcha is asleep.

I’m starting to feel hungry but I don’t feel like getting up to make dinner yet. When I do, it’ll be something warm and simple. I feel as languorous as the shadows stretching across our empty street.

This quiet. I’m thankful for this quiet.

A year ago I was boarding a plane from Ottawa to Vancouver. Or maybe I’d already landed and was sitting in silence in the backseat of my parents car. Or maybe I was still locked in a YOW bathroom stall, perched on my suitcase and sobbing.

Nothing was quiet then. My thoughts were racing faster than I could keep up with and yet none of them made any sense. I couldn’t feel properly. The deadness of my emotions made my insides feel like cement, and I obsessed over this. I couldn’t think or care about anything except the fact that there was something deeply wrong with me.

Only a week or two later, lying in a hospital, paralyzed by these thoughts, I’d hallucinate that my brain was like a record, with voices spinning endlessly, refusing to be quiet enough to let me think properly.

But on that long-weekend Monday last October, I hadn’t quite reached that stage of delusion.

This is a story I’ve never told before.

I booked my ticket to Ottawa maybe two weeks before leaving, springing the decision on Dario and his parents. He’d been back in Ontario for just over a month, trying to cope or trying to forget the fact that I was losing my mind. A year later, neither of us really knows which.

I was filled with a frantic, desperate hope. I’d recently seen a doctor who thought that my symptoms were the result of something neurological, rather than psychological (spoiler alert: he was right) and he’d taken me off most of my medication. In my paranoid state, I’d become convinced that the pills were the source of the problem. I thought that as soon as the chemicals left my body, I’d feel a sudden clarity.

In addition to this, I was hopeful that seeing Dario and being in Ottawa again would unlock some type of nostalgia in me.

As the plane pulled to a stop on the Ottawa runway, I plastered an unconvincing smile on my face.

When you arrive at the Ottawa airport, you have to take an escalator down from the second-floor arrival gates to the first-floor baggage carousels. As I stepped onto the moving stairs, I spotted Dario waiting to greet me and I knew that, after a month apart, that should have made me feel happy. Over the five years leading up to that moment we’d had numerous airport reunions, and I’d always felt an intense, familiar relief when he pulled me into a welcome-back hug.

But this time, I couldn’t seem to coax even a bit of joy out of my cement-filled core.

The next thing I remember is sitting by lamplight in Dario’s parents’ guest bedroom, him on a mattress on the floor, me on the single bed. I felt overwhelmed by our aloneness. Rather than talk, I downed a sleeping pill and closed my eyes, willing myself to sleep.

When I woke up I still had some faint idea that I might be able to fake my way into normalcy. Dario and I went to breakfast and to the Byward Market. That evening I picked at my dinner, unable to taste it. I couldn’t explain what was wrong with me, and I wavered between feeling silently terrified by this and feeling apathetic about it all.

We went for a walk after dark, past the brick mansions in the Glebe and then up to the apartment building where we’d spent our final two years of school. I felt like a stranger to myself, to the city, and to the person beside me.

After spending the whole day gathering my courage, I finally forced myself to ask the question I’d come to Ottawa to ask. It took so much effort that I felt like I was heaving up the contents of my stomach, pushing the words out of my esophagus.

“When do you think you’ll come back?”

There was a pause, then a quiet. “I don’t know. I’m scared.”

I knew instinctively that “I don’t know” meant “I’m not.”

And I couldn’t blame him. It’s a struggle, still, to understand what happened to me and to the people I love during that time, and to wrap our minds about how we dealt with it all.

I slept as much as possible through the next two days, trying my best to stay curled up in the guest bed until it was time to go to the airport. I felt like I was lost to both Dario and to myself, and I couldn’t sum up the ability to feel truly sad about it, much less to verbalize my lack of emotions.

It wasn’t until he hugged me goodbye at the airport that I suddenly dissolved into tears.

“I wish you were coming with me,” I said.

“I know,” he replied.

But he didn’t get on the plane.

It wasn’t long after that I finally got a diagnosis, that I went into hospital, and that my treatment began. A year later, I am so well that, at times, I forget the whole thing even happened. I am so myself that it seems impossible I could have ever been anybody else.

That said, on beautifully quiet days like today, I do find my thoughts drifting to this past year. This past June, I said that I was going to try not to write so much about being sick, but the truth is that there are still many moments when I can’t help but think of my life in comparisons.

As we sat around the dinner table at our early Thanksgiving dinner on Saturday, listing the things we’re thankful for, I said I was grateful to be healthy. I used to think that it was boring or elderly to give thanks for good health, that there were more romantic things to appreciate. But this year, my health seems like the biggest gift of all.

I’m thankful. For the fact that this June, Dario did get onto a one-way plane to Vancouver, for the cat slumbering on the couch, for my parents and sister who ate too much turkey with me this weekend, for my brother and his beautiful family, for my friends, that sat and watched yesterday as a tattoo artist inked a cedar branch onto my upper arm. Thankful to have a roof over my head and food to eat.

This is what I feel thankful for every year and what I hope to feel thankful for for years to come. But this October, in addition to everything else, I am particularly thankful for the relative quiet in my head.

I’m thankful for the fact that my insides no longer feel choked with cement, that I can feel the heart beating in my chest and that my brain, once swollen in my skull, has finally healed.

Love,

Emily

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

 

Beginning

Dear world,

These past few days the sun has managed to defy the weather forecasts and shine down with a gentle strength, hinting at what I can only hope will be a warm summer. It’s a welcome break from the rain, but also a tease. Knowing this city, it could be a false promise.

Regardless of the weather, these coming months are almost guaranteed to be better than last year, when the beginning of nice weather also signaled the beginning of a terrifying illness.

I’ve been back in Vancouver for more than twelve months now. Three hundred and sixty-five days (plus a week and a half). Full circle. Back to an apartment by the Quay, Seabus trips downtown, wine nights with The Girls that transport me back in time.

It’s almost easy enough to believe this past year has been a bad dream, to discount it, to be as fresh and eager as I was when I touched down a year ago. I had a false start, but maybe now I’m ready to take off again.

There is a tension, here. A push and pull between wanting to be brand new (or perhaps be who I once was) and to remember, to relive. Maybe, I tell myself, to make sense of it all.

My dreams are smaller now. That won’t necessarily be a permanent state of mind, but for now my ambitions have been scaled down.

I crave normalcy, routine and a sense of self. Those are the wildest goals I can aim for at the moment.

This isn’t a bad thing, though. In fact, the more I think about it the more I come to see it as a radical concept.

I remember a song from years ago, made mainstream by an Apple commercial, I believe. “I’m a new soul, I came to this strange world, hoping I could learn a bit ’bout how to give and take.”

That’s how I feel, tender and a little unsteady.

Maybe it’s the cherry blossoms, the scent of spring, the hint of new beginnings. Maybe that’s why I feel this way. But I like to think it’s also something more intrinsic. I can almost feel my muscles tensed, ready to spring forward.

I’m rebuilding and beginning. Everything is small and fragile, but also big and a little scary. And in a way everything is more mine than it used to be, or than it has been in a long time.

I’ve come so far. It sounds grandiose, but I mean it in the simplest terms when I say that I feel like my very existence is miraculous, that all existences seem miraculous right now. Think of the universe. From what we’ve seen so far, we go against the odds.

I feel a quiet confidence that wasn’t there before.

In the last month I’ve organized a successful fundraiser, spent a few mornings back in the office, laughed real, genuine, laughs, learned a little. I’ve been enveloped in the love of friends and family, submerged in beautiful friendships and sisterhoods. I went to a wedding and a Bachata lesson and an environmental documentary and a few too many concerts. I played basketball and went on a couple of hikes and went to yoga and read. Lately, my appetite has been voracious.

I feel like, finally, I can see the path to moving on. Actually, I’m already moving on. There was no starting line. I just bled into it, like ink and water.

I’m no believer but this year I’m reborn, risen from the dead. I’m a newly hatched chick, a crocus pushing through the soil. I’m April showers, May flowers.

So it continues. So it begins, again and again.

Love,
Emily

Her Mind speech

Dear World,

I’m still basking in the afterglow of a night filled with love, community, good food, soulful music and awareness/fund-raising about Anti-NMDA Receptor Encephalitis.

As the adrenaline starts to slowly fade, I thought I’d share the words I spoke last night, on the off chance somebody out there couldn’t make and is interested in reading them, or somebody heard me speak last night but wants a written copy of what I said.

Thanks for the love, laughter and tears last night. My heart is full of your love today, and I know I will carry that with me as I move forward with my recovery and beyond.

I want to start by thanking everybody who’s here tonight. Whether you’ve been supporting me and my family for the past 23 years or I’m just meeting you now, I can’t express how much your presence means to me.

This past year has been a wild and surreal journey. To tell the truth, much of it is still sinking in, and a large portion is probably lost to me forever.

But despite these lapses, I’ll do my best to tell you an abbreviated version of my experience with Anti-NMDA Receptor Encephalitis. There will be gaps, but I’ll try to tell my personal truths.

A year ago, to this day, I was in Paris. I had just wrapped up a successful position as a journalist and was poised to move from Toronto home to Vancouver, where my friends, family, and a new job were waiting.

The move was sudden but successful, and my transition into my new workplace was challenging in all the right ways. I was ready for my then-boyfriend and my cat to arrive in my home city, when all of the sudden, I stopped sleeping.

My relentless insomnia lasted three weeks, but as far as I know went largely unnoticed to the outside world. By the final day of sleeplessness, however, I was growing panicked. I called my ex from the Seabus terminal and told him, “I don’t think I can do this much longer.”

That night, lying in bed, my calf muscle suddenly seized up, and I blacked out. I awoke to paramedics looming over me. I’d had a grand-mal seizure and needed to be rushed to the hospital. Once there, I was processed in emergency and taken to a room to await a doctor’s assessment. While waiting, I experienced another violent seizure, and became so aggressive that they put me into a coma.

When I awoke 8 hours later, I was in a hospital bed, with no memory of the various tests my body had been put through. I saw a neurologist, who told me that, as far as they could tell, there was nothing seriously wrong with me. I snapped a selfie and sent it to my best friend in Toronto, to prove I was alright.

At my insistence, I was released and told to return for a sleep deprived electro encephalogram, the test where they stick a bunch of wires to your head so you look like an electronic medusa. The results of that also came back clean.

I started to see a psychiatrist on a weekly basis, and he put me on sleeping pills and prescribed anti-anxiety medication. After four weeks of appointments, he referred me to a counselor, who diagnosed me with “Adjustment Disorder,” or “Major Depressive Disorder,” brought on by the stress of my move.

She attempted some talk therapy with me, but by this point I was finding it harder and harder to communicate. For most of our sessions, I was entirely quiet.

Outside of my doctors appointments, my behaviour was growing increasingly erratic. I’ll spare you the details, but I can tell you that I was not myself. I experienced “fight or flight” responses to situations that shouldn’t have been stressful, and lashed out at the people I loved most. Now, when I look back at photographs of this summer, I can see that my eyes seem dull and vacant, as if I was really somewhere else.

By the end of the summer and early fall, the situation was growing extreme. I began to have vivid, life-like dreams that left me emotionally drained and confused about reality. Social situations were essentially impossible. I was put on anti-psychosis medication that did nothing to ease my emotional turmoil.

Out of desperation, I tried to arrange to get into a home for mental health patients on the North Shore. Before admitting me, however, my care team suggested I see a different psychiatrist for a second opinion.

In many ways, I credit this doctor for saving my life. He immediately took a drastically different approach, insisting that there was too much of a link between my seizures and my strange behaviour. He took me off all of my medication except for my sleeping pills, and ordered me back to see my neurologist. For the first time I felt some hope.

My neurologist recommended further testing for rare diseases, and I underwent another round of spinal taps, EEGs, and blood tests. I remember waiting anxiously for the results, equally terrified that there would be something wrong with me and that there would be nothing wrong at all.

Finally, the results from a blood test which had been shipped to Calgary came back with an identifiable issue. I had a high count of antibodies in my blood, which indicated that I may have Anti-NMDA Receptor Encephalitis.

To be honest, what followed is a bit of a blur, one that may be better explained by the people who surrounded me at that time. What I do know is mostly made up of what I’ve been told.

I know I went into hospital in North Vancouver, but was then transferred to VGH, where I spent nearly a month in intensive care and underwent steroid treatment, plasma exchange, and a chemo-like treatment called Rituximab. At one point, I believe I was on up to 16 different medications. Then I spent about two weeks at a facility at UBC before being discharged.

But what it felt like to me was a series of nightmarish, often psychedelic dreams. I saw the world all in shades of one colour, and dreamt of being strapped into a hospital bed, fighting my restraints. I went through periods of mutism and catatonia. I felt like I could see and feel music.

Since coming home my recovery has been both impressively rapid and painfully slow. In hindsight, even though I felt triumphant at the time, I was sluggish and off even for my first month or two at home. But as my medication has reduced and the swelling in my brain has gone down, I’ve slowly begun to settle into my old mannerisms and approach to life. When I’m able to, I can even write a few coherent sentences.

Every week I inch closer and closer to my former self, but at the same time, I know I’ve been irreversibly changed.

Anti-NMDA Receptor Encephalitis is a horrifying disease.

I was struck particularly hard by a passage in Brain On Fire, when the author writes, “But most do survive. Even though it’s a hellish experience, the disease is unique in that way, compared to other forms of deadly encephalitis or debilitating autoimmune diseases. It’s difficult to find another example where a patient can be comatose and near death, even in an intensive care unit, for many months yet eventually emerge relatively, or even fully unscathed.”

And so that is me today, a survivor.

I have been to Hell and back – and I don’t necessarily mean that figuratively – and now I’m here, with all of you.

And all I can do is, again, thank you for your presence. In particular, I want to thank my parents, who fought tooth and nail for me, my sister and brother, my best friends, Eli, Ashley, and Aneesha, who have loved me since we were twelve years old and all wore Old Navy flip flops, the doctors and nurses who took such good care of me and continue to steer me on my path to recovery, my co-workers at Ecojustice who fearlessly defend our planet and have stood by me all this time, and, of course, the unstoppable Julia Hunter, who is the reason we’re all here tonight.

And, lastly, I promise you that I will do what I can with this second chance at life. I owe it to you all, and to myself.

Thank you.

Love,
Emily

IMG_2472

On free coffee, free time, and the past, present and future

Dear world,

I’m sitting in a McDonald’s just a few metres from home, watching rain pelt the pavement of a sorry excuse for a patio and sodden construction workers pace back and forth. Just beyond the commotion, the sea is the same cloudy shade of grey as the sky.

I’m waiting for my small cup of free coffee to cool and patting myself on the back for getting dressed before noon.

From the outside, it might sound like I’m living the life. Lazy mornings and hours to spend curled up reading, surfing Netflix, catching up on the Oscar nominees or scrolling through Facebook and reading whichever quirky headline catches my eye (Did you know Emma Watson is refusing to take selfies with some of her fans? Or that the a sizeable chunk of Billboard-topping hits are written by bald Norwegian men?) Plus, I’m living rent-free and get to go to Tokyo in a few weeks. Why would I ever want to go back to work?

But, to be honest, staying home “sick” every day is really difficult. Even though this process is called “recovery,” it’s both mentally and emotionally draining. It takes effort, even if that isn’t always apparent on the surface.

To start with, there’s the practical part. There are the basic adult tasks of having to do laundry, figure out what to eat for breakfast, lunch and dinner, remembering to pay my Visa bill each month and trying to decode my T4’s (even though my wonderful father is the family tax-whiz and willing to help out).

Being sick also involves extra paperwork. There are letters from the government and forms from my insurance company. There are applications to fill out and phone calls to make. There are endless loops of the same forgettable song while you wait on hold as they transfer you from one department to another. Sometimes, as was the case this Monday, there are curt employees who make you burst out in tears as soon as you hang up the phone.

There are appointments. There are treks to see doctors, rain or shine, with my headphones and iPhone my only sources of company (my father often gives me rides and I’m thankful for that). There are invasive questions, picking and prodding my mind and body. There are tests to schedule and keep track of, and rules for each procedure (fast for 12 hours, no jewellery, have clean, dry hair). There are prescriptions to drop off and pick up and adjust.

(A note: As confusing or tedious as all the paperwork, phone calls and appointments can be, I’m grateful for our healthcare system and for my insurance, which have funded my treatment and recovery. I’m also super grateful to the healthcare professionals who have taken care of me, and to my amazing work place, which has been more than supportive this whole time.)

It is stressful, keeping everything in check. In some ways, however, these medical necessities are also a welcome source of busyness. They seems to justify my long absence from work, all those lost hours of productivity or socializing.

Because the other hard part of this whole experience are the hours of solitude, the long stretches when it feels like I’m not really doing anything at all. The times when I feel like I should be running or writing or saving the world. The times when I search for an answer when family or friends or doctors ask me what I’m up to, how I’ve spent my day, when I’m planning to be back at work full time, or if I’ve been outside yet.

I think I’m getting better at being alone and filling the empty spaces in my days, but I often still feel heavy with guilt. One of my yoga teachers says all of our problems stem from thinking about the past and thinking about the future, and too often I have time to dwell on both.

As much as I know I’m not at fault (nobody chooses to have their own body attack their brain), I can’t help but run over scenarios in my head.

When I think about this past summer, I’m often filled with regret. If only I’d had the strength to hold my tongue in that one moment. If only I’d had the restraint to wait until I was alone to let my emotions spill over. If only I hadn’t attacked this person in that way, then maybe it would be easier now to pretend as if the whole thing hadn’t happened, or that it wasn’t so serious.

For months, I was possessed. I look back on photos of that time and I can see how vacant my eyes look, how weak my imitation of a smile is. It’s as if my mind wandered out of my skull and decided to take an extended vacation in who-knows-where. And without my better judgment, what was left of me rebelled.

With nobody at the steering wheel, I resorted to basic animal instinct, cowering in a corner and lashing out in self defense. I fought or flew, hurled insults or crawled inside myself and went mute. And, even though doctors and loved ones and even I know that my mind was absent at the time, I can’t help but want to apologize for what my feet and hands and mouth did while my consciousness was away.  Somewhere, deep down, I still feel like it was my fault.

Meanwhile, when I think about my present state and the near future, I feel a pressure to be doing so much more so much quicker, to make amends and move on. My mind is home again and I feel like it should be working more smoothly, like my thoughts should be more seamless, my synapses less sluggish.

In the age of social media, this feeling is especially acute. I know that much of what I see is a facade, but I can’t help but want to keep up with my fast-paced friends. I want to eat that Instagram-worthy meal and attend that exciting Facebook event and Tweet that witty line and send that adorable snap with a hanging dog tongue. I’m proud I got out of the house this morning, but my free McDonald’s coffee seems a little sad in comparison.

And it’s not only other people. Every morning Facebook sends me a little notification, a red flag reminding me that On This Day “I have memories with so-and-so and so-and-so  and this many others.” Two years ago I was hosting three Rwandans in frigid Ottawa. Three years ago I was eating dim sum at my favourite Chinatown joint, the one where we once spotted John Baird. Seven years ago I was swarmed by jubilant crowds after Sydney Crosby scored a gold-winning goal.

I am haunted by these past successes, compelled to pour over them and reminisce, then filled with a longing for my old self. As well as I get, I can’t help but feel a stone-like knowing deep in my belly: that type of innocence is impossible to recapture.

That said, I’m doing my best to treat this as a learning experience. Yes, recovering is really difficult, but I must be learning something in all these hours of self-reflection. Working or travelling or going to school for a year are all rewarding and enriching experiences, but maybe learning to live with and work on yourself, free of the usual distractions, can also present lessons worth learning.

And, as always, I’m forever-grateful to the amazing support network that surrounds me. I’m partway through organizing a fundraiser with one of my former nurses, and the response so far has been both humbling and inspiring. I feel the embrace of so many generous souls, letting me know that as isolated as I may feel soldiering through this rare disease, I’m never truly alone.

Love,
Emily