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