Encepha-what? The aftermath of my brain virus

Coping with illness at Queen’s

Image supplied by: Journal File Photo

11 p. m., April 1, 2017.  

Loud. Bright. Cramped. I’m at the John Mayer concert in Montreal. I’ve been waiting for this night for the past three months. So why am I not having fun? 

I can’t see him. This doesn’t even feel real. Not in that “this is way too good to be true!” kind of way, but in an “I don’t feel like myself” way.

The three raspberry mojitos I had with dinner are giving me a headache that reaches all the way down into my neck. The drunk teenagers behind us don’t know any of the songs and seem to find happiness in loudly declaring said fact. Can I just go to bed? 

11 a.m., April 2, 2017. 

I’m driving back to Ottawa after having brunch with one of my best friends. The sun is bright today; my head is still hurting from those raspberry mojitos. I make a mental note to never order a sugary drink again. 

11 p.m., April 2, 2017. 

“It’s just the Rub A535 I put on your shoulder,” my mom says, trying to explain why my right arm has gone numb. 

I guess that would make sense? My head hurts again — a lot. I can’t even watch Netflix without taking a break every minute because the screen seems so bright. I know that something isn’t right, but it’s not like I’m dying or anything. I’ll just try to go to bed. 

30 minutes later I’m fumbling around my bedroom, trying to change into something more hospital-appropriate than the sea-turtle pyjama bottoms and tie dye shirt I’m currently wearing. 

I can’t seem to stand up properly, failing miserably at my foot-in-pant-leg attempts. I’m preparing to go to the Ottawa General Hospital just to be safe. Less than thrilled; worried that I wouldn’t get enough sleep to wake up ready for my 7 a.m. Greyhound ride back to Kingston. 

An hour later I’m sitting in front of the ER nurse, unable to remember what the pen he’s holding up in front of me is called, unable to remember the name of my mother (or even that she is my mother) and unable to speak. I’m definitely not going to make that bus.  

11 a.m., April 5, 2017. 

I’ve been in the emergency room for almost three days. I can finally remember the names of my parents, but I still can’t go to the bathroom by myself (who knew you could forget how to flush a toilet?).

I can only remember a few things from the past three days: vomiting all over a million-dollar MRI machine, my first lumbar puncture (which is quite an interesting experience when you can’t form the words to ask what is being stabbed into your ‘upper butt’) and most perplexingly, the doctor asking me which school I was attending, to which I mumbled “Western.” Yeah, I don’t know why either. 

It’s a Wednesday, and they finally find me a room on the neurology floor. I’m welcomed with a ginger ale and pack of crackers, which I promptly vomit up onto my bed. The next few days are filled with countless needles, tests, sleepless nights and insipid hospital meals. 

After suspecting a stroke, migraine, teratoma and more, the doctors settle on the fact that I’ve fallen victim to viral encephalitis caused by an undetectable virus. 

My entire brain had swelled, causing the headaches, neck pain, aphasia, nausea, confusion and numbness I had been experiencing for the weeks and days leading up to this point. Turns out the raspberry mojitos weren’t at fault. 

11 a.m., April 11, 2017. 

I’m finally being released from the hospital. Time for some real food and HGTV. 

The first few days I spent at home were pure bliss, but as time went by, I began to feel more unlike myself than ever before. 

My depression came back and I felt listless and purposeless. I had no job, most of my friends were still in school, and I spent my days alone in front of the TV. You could say HGTV had lost its charm. 

As the months went on and the summer progressed, I began to feel like myself again. I had landed two great jobs, was spending my weekends with my friends and had finally finished my exams. I was completely ready to take on second year as though nothing had happened. 

For months I tried my hardest to deny that my encephalitis experience had changed me in any way. 

When I was discharged from the hospital, the doctors told me things would go back to normal, so how could anything be wrong? Now I’m coming to realize, without a doubt, that my experience changed me in many ways. 

I’ve grown a much stronger appreciation for my friends, who showed me more support and love than I could ever imagine. I’ve also never been more thankful for my parents, who stayed by my side for days as they listened to my laughable attempts at forming coherent sentences and spent night after night sleeping in office chairs beside my bed. 

There’s not a day that goes by where I don’t think about the nurses who made me feel safe and cared for, whether they were giving me my showers (it’s surprisingly not as awkward as you would think), delivering my beloved doses of Tramadol or chatting with me about my cats as they took my blood, they helped me a lot.

All of these people made me realize how lucky I am to have such a great support system and I’ve never taken them for granted since. Friends from home visited me daily bringing pizza, flowers, stuffed animals and, most importantly, their company. Floormates and teammates from Queen’s sent edible arrangements, which was extremely kind. 

Before my encephalitis I didn’t doubt this support system was there, but it was incredibly eye opening to see people rally around me during my time of need. This will stay with me forever. 

With all of that being said, I still find myself struggling with the negative effects of my experience. I now face difficulties with concentration and reading. 

In addition to those frustrating setbacks, my anxiety is at an all-time high. Painful and unanticipated panic attacks have become a weekly norm, striking at the worst possible times. I now find myself asking, “Why did I change?” and “Why am I struggling with these things?” I still don’t know the answer to these questions and that discourages me. 

More doctors appointments need to be made and therapy sessions need to be booked. I recognize and appreciate how lucky I am to have made the recovery I did, but I’m not completely okay and that’s okay. 

We’re all subjected to the pressure to be fine all the time. Not only is this unrealistic, but it’s also harmful. I’ve experienced firsthand how being at Queen’s can both lift you up and drag you down. This school provides you with countless opportunities to achieve excellence, but simultaneously makes you feel inadequate if you haven’t quite gotten there yet. I’ve learned through my experience that it’s okay to take a step back, slow down and take care of yourself first. 

I hope that by sharing my experience, others will feel a bit more at peace with the obstacles they’ve encountered, no matter how big or small. When it feels like your world is crashing down around you, don’t worry, it can be rebuilt. The process may be long and hard, but all progress is good progress and I assure you people will be there to help along the way. 

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Postscript

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