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