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 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 partner 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 woke up 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 was taking 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 what can only be described as Hell and back 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.