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

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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

 

Fire Roosters and Epictetus

Dear world,

It’s February 2nd, the year of the Fire Rooster.

According to the Chinese zodiac, this means it is “(my) year, but it usually means conflicts.”

I’m not superstitious. I believe everybody walks their own paths and chooses their own detours. I think we are all wandering this planet, both alone and together on our journeys through life.

But sometimes I find myself slamming into the weight of this world and coming face to face with all its untimely coincidences. Sometimes I feel as though I have run, headlong, into a metaphorical cement wall. Sometimes I wish I could find comfort in words of fortune and warnings about the future.

I wrote yesterday that I am astounded by life, every moment.

About a year ago, I spent a day in the underbellies of Canada’s largest city, capturing candid shots of commuters and posing in the places where public telephones once stood, relics of our past.

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Three years ago I spent the evening with a friend, watching Life of Pi and eating Ethiopian food.

Before that, I attended a cat christening at a cozy little Ottawa apartment, dubbed the “Lady Palace.”

I have lived in “gypsy dens” and a century-old house named Pablo. I’ve stayed the night in a castle in Salzburg and eaten home-cooked ugali while sitting cross legged in Kigali.

I moved across the country when I was barely 18. I’ve lived with sex-bloggers, small-town-girls and devout Christians. When I was only 20 years old, I found a place in Centretown and moved in with my Albanian-born boyfriend.

And now, abruptly, I am home…with my parents.

And the view of the ocean and Vancouver skyline is breathtaking, but I can’t call these rooms my own.

This is not where I thought I would find myself at 23, ringing in the Lunar New Year and looking at the heavens in case there is some small sign up above.

I’m on leave from work, trying to fill my time with yoga and running and coffee and dinner dates, trying to avoid turning on Netflix and binge watching from beneath my blankets.

And I’ve come so far. Three months ago I could barely function. I was unable to speak, unwilling to eat, and trapped within my own mind.

My doctors say I’m progressing faster than they could have predicted. My parents say they can’t believe how I’ve improved. Dario tells me the whole episode — our temporary North Vancouver apartment, my dramatic illness — feels like a dream looking back.

So really I shouldn’t shoulder this pressure to be better. But sometimes it’s difficult to see the small miracles of my recovery.

As proud as I am of them, sometimes I can’t help but feel a tinge of jealousy when I hear about how successful my friends, colleagues and former classmates are at their new careers, how they’re leading clubs at school, preparing for graduation, organizing events and protests, working towards promotions, landing job interviews or editing gigs, getting stories published. Sometimes, I can’t help but feel down when I receive an unplanned phone call and there is unexpected and unwanted news on the other line.

It’s petty, but my thoughts remain imperfect, even as the swelling in my brain goes down.

On Sunday evening I went to a 6:30 p.m. Yin yoga class and between poses the instructor, a silver-haired woman named Andee, told the story of Epictetus.

According to her simplified biography, Epictetus was born in 55 A.D. Originally a Roman slave, he also suffered from some type of unidentified physical disability. Despite these obstacles, Epictetus gained his freedom later in life, and eventually moved to Greece to teach philosophy.

There, he imparted his wisdom on some of the era’s greatest thinkers, espousing his view that we cannot control the external world, but that, with deliberate thought, we can control our own actions and way of thinking.

“(He taught that) judgment is the source of all negativity,” Andee said, before encouraging us to take a few more inhales and exhales and shift to a different position.

After weeks of distressing politics, massacres on holy grounds and my own ongoing struggle to regain myself, the words seemed significant.

It is “(my) year, but that usually means conflicts.”

May I have the strength to breathe deeply and stretch my body, my mind and my soul a little further.

Love,
Emily

Enough for now

Dear world,

I feel so full right now.

I am brimming with golden-fried cauliflower, creamy lentils, avocado and Halloumi cheese topped with pomegranate seeds; and good conversation and cucumber water and … contentment.

I was slow to roll out of bed this morning but I greeted the rainy day by bowing to my heart and saying “Namaste.” I spent an hour and a half practicing deep stretches and deep breathing, lulled almost-to-sleep by an instructor’s voice.

I came home and wrote a little, letting myself release stream-of-consciousness sentences with the knowledge that those words may only ever reach the “draft” stage.

Dad picked me up around 12:30 and I bought myself a tall Pike Place and filled it nearly to the top with cream and waited for him to finish an afternoon meeting. Then we went downtown for a late happy-hour lunch of Malaysian food. We split chili-sauce-topped eggplant fries, a mango, jicama and cucumber salad, rings of calamari and roti dipped in vibrant curry. I sipped on guava juice while he downed a grain-coloured beer or two.

Then, not quite on a whim, we decided to visit Vancouver General Hospital

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Vancouver General Hospital, image by chispita_666, via Flickr

I spent more than a month there, between October 28th and December 1st, but my memories of the place are mostly vivid dreams.

In one dream, I dreamt entirely in shades of purple. I was a purple-coloured Emily, confined to a purple-coloured hospital bed, with purple straps around my wrists and ankles and a restraint across my chest. My task was to untie myself, so that I could slip next door into another purple room, where another purple Emily was bound to another purple hospital bed. In total there were one hundred rooms, more than 500 knots to untie, before I could re-emerge into my fully coloured life. It was a difficult task, but I was determined to survive.

In another dream, I was alive but couldn’t move and could barely tell the difference between this world and the next. I saw my room all in shades of yellow and my only clue to my own ability to continue living was the fact that my shallow breathing could cause the sallow-coloured hospital curtain to blow in and out in front of me. (I think this dream might have been inspired by the famous feminist short-story, The Yellow Wallpaper).

I had other dreams, too, kaleidoscopes of colours, cartoon characters, mind-readers in space suits, and music that I could hear and feel in the third dimension. In some dreams, real-life characters entered in unexpected costumes, or took on new roles as family members or close friends or soul mates.

In real life, I was undergoing major treatments. I was pumped full of steroids. I had a tube placed in my neck for “the PLEX (plasma exchange).” I spent hours drifting in and out of consciousness while a drug called Rituximab slowly dripped into my veins.

This afternoon I returned to the scene of my dreams, the intensive care unit where I was cared for by an amazing group of human beings.

I met a nurse named E. who I’d dreamt was my aunt and who I used to look for on the “job board” every night, hoping she’d be assigned to me. I met another nurse named L. (pronounced like-a, as in like-a-friend or like-a-____), who, when I was sick, I imagined was like-my-best-friend, and who, in real life, let me take selfies with her as if we were “twinsies.”

I met a care co-ordinator named J. who apparently helped organize the procedures that probably saved my life and definitely saved my sanity. And I met another nurse, whose name also started with J., who I think once helped me up off the floor when I thought life wasn’t worth living anymore.

All of these incredible souls cried when they saw me today: almost-recovered, upright and functioning.I received many hugs, and J., the nurse, told me she was planning a fundraiser for anti-NMDA receptor encephalitis (my condition). “It was supposed to be a surprise!” she exclaimed, as I handed her my contact information.

Then I went to dinner with a friend from Carleton and I told her the whole story (or at least an abbreviated version). I started with the time I stopped sleeping for three weeks and ended with this afternoon’s tearful reunions.

We shared a meal and reminisced and she told me about her recent adventures on beautiful Vancouver Island and we dabbled a little in politics and caught up on what we knew about other J-School grads and it felt good to be sitting there, alive and cozy in my favourite local Lebanese cafe, while the rain pounded the pavement outside.

And now I’m home and there’s a load of laundry on and I’m wearing an old shirt that says “Make Life Epic” and the fireplace is flickering beside me. Mewcha, my fluffy old cat, is curled up in a ball, and I know I still have a ways to go but I also know I am so much better.

Tonight, this is enough.

Love,
Emily

P.S. Here are another few lines of lyrics that resonate with me right now, some poetry that echoes in my heart:

Woken up like an animal
Teeth ready for sinking,
And my mind’s lost in bleak visions
I’ve tried to escape but keep thinking

Limbs lost to a dead weight stake,
Skull cage like a prison.
And he’s lost faith he’ll ever see again,
So maybe he once thought of me then.

Underneath skin there’s a human,
Buried deep within there’s a human,
And despite everything I’m still human,
But I think I’m dying here.

Human, by Daughter

For those who are saving me

Dear World,

It’s a Tuesday afternoon and I have some quiet.

It seems a good time for some soul-searching, a task to which I’ve been devoting much of my time as my recovery continues.

It’s sunny out, but only two degrees, and today I slept the morning away.

I started my day with a doctor’s appointment, during which I uncharacteristically slid in and out of sleep.

Then I came home and crawled under the covers and and didn’t stir until 2 p.m.

Part of me feels guilty, but part of me wonders if I needed the extra time to pull myself together and continue this journey.

I am trying to be careful with body, mind, and soul, even though self-love doesn’t always come easily to somebody who enjoys the strain of accomplishment as much as I do.

In order to help myself, I’ve been reaching out to loved ones and trying to allow my inner self to try on crutches every once in a while.

I’ve been learning that sometimes I need help.

I remember a sticky day in India when fifteen teenagers played a game in which we were blindfolded and encircled with rope.

Our task was simple: we had to find our way out of the circle without breaking the nylon strands that bound us.

If we needed help, we merely had to raise our hand and a group leader or somebody who had already made their way outside the confines would help lead us out.

I spent an unknown stretch of time repeatedly circling the rope, grasping  with my fingers, trying to find a break in the knots, before I realized I was the second to last person still fumbling in the dark.

I raised my hand, and understood the message: Every hand needs to grasp another’s at some point.

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Udaipur, India, 2011

So these days I’m learning both how to walk on my own and when to reach out to the nearest kindred spirit.

Sometimes there are no kindred spirits around and I need to humble myself enough to accept somebody else’s attempt at throwing me a lifeline.

And I do mean lifelines literally.

I have met doctors with shoes from Peru who liked my books and were willing to slip in a “I like you” every once in a while, and I have met doctors who studied at Harvard and are willing to push insurance companies so that I can have the care I need to survive in this spinning world.

I have also met doctors who have insisted I was selectively mute, or who needed extra prodding in order for them to hear my voice, but I try not to dwell on those experiences.

I am getting stronger, every day, and it is thanks to readers like you and countless others that I am able make this transformation and escape the bonds my own body has placed around my brain.

So thank you to those who read these words and those who accept coffee dates and laugh at my trials and errors and offer a helping hand when I so desperately need it.

Sending love and light,

Emily

New Year’s resolutions

Dear world,

It’s January 1st and I feel a little raw.

I’ve just taken my afternoon Ativan and I’m looking ahead to the next few days, weeks, and months.

Blister pack

The weekly dosage

It’s been such a tiresome year, and I have so many hopes for 2017 that the burden is almost back-breaking.

I want to be well.

So well that I am loveable.

And yet, I only have one New Year’s resolution. I want to live an extraordinary life.

(Maybe those sentences mean the same thing)

I want to recover and I want to be more than better. I want to run and eat well and live fully. I want to be independent and I want to feel something more than abandonment. I want to be surrounded in love and experience some strangeness in the dark.

I want to write and reach out and do it all in my own way, even if I fumble.

It’s going to be difficult (it already has been), but I think 17 is a good number and I have hope.

Happy New Year, World. You’re full of surprises but I’m still in love with you.

– Emily

An unusual list

Dear world,

Around this time of year a certain obsession tends to take hold.

Maybe it’s the busyness, the crush of Christmas and the anticipation of a new year, but for whatever reason, many people I know begin making lists.

Personally, I’ve often found lists a handy way to organize tasks, subjects, or trains of thought. But since developing anti-NMDA Receptor Encephalitis I’ve only been writing down essentials (when I remember to).

You see, I feel physically fine right now. But I’ve been told that my memory and concentration abilities may take months to fully return.

It’s a blow to somebody who likes to memorize names, faces, and lyrics.

I felt my memory loss acutely last night, when old friends came to visit and my brain strained to recapture moments that should have come easily to me.

And now, with 2017 approaching, I find myself clinging to the desire to write a different kind of list.

I’m still processing what has happened to me, and today I’m going to write about what I lost and what I found in 2016.

Somebody once told me I should just “write it all out,” so I’m hoping this will be a cathartic exercise (and that it may inspire whoever is reading this blog to do a little of their own writing, even if all they can think of is a list).

So to start:

Things I’ve lost this year (in no particular order):

My great aunt

My grandfather

My camera

My keys

My home

My sanity (at times)

My dignity (at times)

Many tears

My boyfriend (sort of)

Things I’ve gained this year (in no particular order):

A renewed sense of purpose

Some optimism (I hope)

A decreased swelling in my brain

Some very appropriate Christmas gifts

Some understanding

Closer ties to my family

Love from dear friends

A new job

New friends

That’s all for today, much love,
Emily

 

Welcome

Dear world,

It’s Dec. 24 and I’m sitting here with wet hair, wearing a shirt I bought in India and thinking about life.

It’s been a strange year.

For one thing, at this time, Dario is at home in Ottawa and I’m at home in Vancouver and we’re both with loving families.

Secondly, I had/have an extremely rare condition called anti-N.M.D.A. Receptor Encephalitis that gave me hallucinatory dreams, made me desire certain forbidden fruits, and gave me the strength to spit on a security guard.

I think it started with a move, but it might have started with an incredible vacation or a bad night. All these led to three weeks of insomnia and, finally, a huge seizure.

After that, I saw a series of doctors and spent 52 days in hospital.

Some night I slept and some nights I didn’t.

But the point of this all is that I’m getting better.

So much better that I know it’s going to be a few months until I recover from this one.

And so much better that I still love to write and have learned to love to run

So much better that I still love India and Rwanda and the whole world in all its beauty.

And if this sounds like a simplistic poem, that’s because it’s the truth.

I have more to say, but I might need to leave it to another time.

Lots of love,

Emily

P.S. I’ll leave you with some of my favourite lines/poetry ever written, because I think all good writing should begin with the truth and end with the truth (like a journalist).

“Sorry this is it,

it’s cold and hard and badly lit

and there’s no backing out of it

so forget where you’ve been

it’ll never be that good again

and soon you’re 33 and everything you’ve tried to be

is pulled apart by fear and greed

So I welcome you to it

And say let the God Damn games begin

‘Cause the God that gives deliverance has a thing for disappearing, Kid

and the fighting on the beach is it,

and the 5 a.m. to Winnipeg,

And the nights and fight and poison pits,

And the needle edge of all regret,

But the wind will always shift again,

And the breath beneath your apple legs

is strength enough to carry this.

And young hand could lift you up,

could carve your face in honest rock,

let sunlight on your noble jaw,

let young hands build you up,

I’m happy that you’ve come along

I’m happy that you’ve come.”

– Hey Rosetta!