A Tale of a Broken Brain

Chapter 1

The Strike Begins

There are sixty seconds in a minute, sixty minutes in an hour, and one thousand four hundred and forty minutes in one day. That’s ten thousand and eighty minutes in one week. I’ve always wished for more minutes in the day and more hours in the week to finish work and get ahead on business, but that all stopped when something happened to my health… and I didn’t know what was happening to my body or if I’d ever recover.

I can remember everything down to the minute it occurred. Everything stopped—or I should say, started—on May 20th, 2015, at 5:22p.m. I went to my local hospital Emergency Department and didn’t leave until June 23rd, 2015, at 10:18a.m. I can’t always remember words or string sentences together, but for some reason, my brain wants me to recover time—and time changes everything.

I had just completed a charity Big Bike ride for the Heart and Stroke Foundation, and my fiancé (now husband) convinced me to go to the hospital. I’d been experiencing weakness on my left side, particularly my left hand, but had missed an earlier doctor’s appointment to get it checked out. To be perfectly honest, my symptoms had been happening for more than a week. Deep down inside, I knew something was wrong, but I didn’t want to acknowledge it. I’d gone shopping with my mom a week earlier for dresses for various wedding-related functions. You know… engagement parties, the rehearsal dinner, bridal showers, and all of the other soirées that go along with getting married. While skimming through the rack at the store, I could feel my left hand weaken, so much so that I dropped a dress on the ground. I thought, Now that’s weird. Was that a fluke? But it happened again. The thought crossed my mind that it could be a migraine, but typically, any migraine-related weakness affects the right side of my body, not the left. I’ve suffered from these migraines for close to twenty years and know them inside and out, so it was a little worrisome when they began acting outside of the normal realm of symptoms and annoyance. I decided to take some Tylenol and a few moments to rest, thinking that would kick it head-on.

I was wrong. Very wrong. Every day since the shopping trip, a new symptom had slowly crept up. My foot began to drag a little more, causing me to trip up the stairs and fall down when walking. I started dropping things, even though the previous week, I’d had no issue with this. I didn’t have time to get sick; I also didn’t have time to go get checked out by a doctor. I was being stubborn because… why not? I had things to do—work to do, specifically. I had opened my business (my dream for a long time) a year earlier and was working long hours, but I loved it.

When I entered the Emergency Department, I wrote my name on the triage form and slid it under the glass, hoping to be called soon. As soon as the time and date were entered onto the triage submission form, I knew that my life would never be the same. The noisy waiting room was filled with people, but I somehow blocked everything out. I was dialled into the changing red digits on the clock. With each minute that passed, I became increasingly aware that something was wrong. After being triaged and sent back to the waiting room, I tried my best not to show just how worried I was.

As a migraine sufferer and having been to the ER in the past for out-of-control-cannot-function-or-cope-for-days migraines, I’ve encountered healthcare professionals who don’t believe in migraines or who automatically flag me as a drug-seeker. In reality, though, to break my cluster, which is a headache attack that appears in groups or short periods like days or weeks, I need to find relief. The only relief that they can give me is comprised of non-narcotic drugs and oxygen.

When I was away from home during my first year of university, I once had a migraine so horrific that I couldn’t cope or break it on my own. None of my tried, and true methods were working. I was taking Gravol for my nausea, extra-strength Tylenol for the pain, and using a cold cloth for my head and neck in a dark, quiet room to alleviate some of the triggers. I waited in the ER for thirteen hours, vomiting in the waiting room. People who had just walked in and were waiting a few hours were being taken ahead of me. I wasn’t a high-priority case, but I needed help. I understand that there were patients with far more significant concerns than mine; however, I was in excruciating pain and felt that no one cared. I was also away from home and my support team. After a long wait, I did end up being treated. But this wasn’t the first time this had happened, and it certainly would not be the last.

This time in the ER waiting room was different, though. My symptoms weren’t typical of my normal migraines, and I was worried that I’d still be brushed aside and labelled like before. I was just waiting to hear the classic line: You’re next, or It’s going to be a few more minutes. Migraines are invisible. No one can see the pain that you’re suffering through on the inside. You’re just a number. It’s funny because I was always quick to judge and put people into boxes, yet I was having that done to me. Every single time that this happened, and that sticker was imaginarily placed on my forehead, I’d become even more frustrated that no one believed me or understood my pain. As soon as we walked into the waiting room on May 20th, I looked around to see who would skip ahead of me and who would look at me and wonder why I was even there.

As I sat waiting, my mind entered the hamster wheel and immediately went to the possibility that something worse was happening to my body, and I wondered if the medical professionals would believe me. Do other people live with the fear that their medical caregivers won’t believe them? Is this a typical emotional response for people to have? That night I didn’t think it was going to be this serious or that my life would change forever. Looking back now, I was scared about the outcome and what the doctors would find, if anything.

We went into triage, and since I didn’t have a severe headache, they sent me back into the waiting room. As we were waiting, I began to lose function in my hand. My headache got a little worse, but nothing alarming compared to what I’d experienced before. I was more concerned about my hand. My livelihood. I looked down at it, and it wouldn’t move. It just lay there like a dead fish. I went to motion for my cup of tea, and my hand flopped over the chair. My shoulder and elbow could move, but nothing past that. I pictured reaching for the tea and grabbing it with my fingers, but still, nothing happened. It was like an out-of-body experience. I knew that something terrible was happening. Fear and anxiety started building up. I just wanted to be okay. It was the beginning of a journey learning about myself and the determination one can have when pushed to your limits.

I have experienced many life-changing events, including the loss of loved ones, graduating high school and then college, getting a job and then subsequently losing it, break-ups, makeups, meeting the love of my life, and getting engaged. I had a procedure on my heart once that I thought would be the most prominent health scare of my life until this occurred. I’d built up a big wall around me. I think others would call it strength, but for me, it was the determination to get through the next curveball. I had the you never know what others are going through mentality, which I think I proudly inherited from my mother, who is a nurse and has seen the worst of the worst. She always taught me that even though I may be having a bad day (and I mean an everyone-seeing-you-naked lousy day), there is still someone out there who has experienced something on the same level or worse than you, so it’s essential to see the silver lining or positive aspects of the situation.

Strength is something that cannot be taught. It is something that is within you and shines through in the darkest of times. I have seen this in many instances, but most of all, when I was a young girl. My dad had a dislocated disc in his back and was bedridden for the better part of a year. Here was this big strong man, our protector, being brought down to his knees by insurmountable pain. We watch him pushed through his pain for so long until he couldn’t anymore. We would watch him stand to eat dinner because sitting in a chair was agony for him. He displayed true strength and determination to rise above what he was dealing with and use it to move forward with grace and determination.

Sometimes I ask what I did to deserve this great family that has helped me through this journey. As much as it has been a physical journey, it has been a mental journey as well. The mental recovery has been the most challenging part of my recuperation. I have felt determined to get physically better, and, thankfully, due to my perseverance and my age, I’ve been able to recover much faster. My brain and cognitive recovery, however, were not as cooperative.

Chapter 2

Am I Ugly?

Beauty means different things to different people. I never thought I was a vain person by any means; however, I wore makeup, maintained highlights in my hair, and tried to keep up with the latest fashions (if my budget allowed). So, I guess you could say I was a little vain. I’m not going to lie—I cared about my looks. It wasn’t until Wednesday, May 20th, that my perspective and feelings about my looks changed forever.

As we waited in the ER, my symptoms began to worsen. Sidney, my fiancé, approached the triage nurse, who eventually put me in a bed in the back. I was in the hallway because it was a busy night. My head hurt, but not to the magnitude of a terrible migraine. I know pain, and this wasn’t one that registered with my normal pain levels.

Ever since I was a young girl, I’d measure my migraine pain levels on a scale of one to ten. When I was really small, it was a way to communicate to my parents how much pain I was in and how much I could tolerate. How else does a five or six-year-old explain to their mom or dad that their head hurts really bad? A specialist had taught us this method, and it worked quite well. Every day I have a level-four migraine, but when I get one that forces me into bed and requires darkness and silence, I place it above a six. I used to have a ruler with smiley faces on it that would act as my one to ten scale—one being a happy face and meaning no headache, and ten being an angry, red, crying face, meaning head for the hills, call in the troops, it’s a bad one. To communicate, I would point to the appropriate face and number. I still have this ruler to this day.

While I continued to wait, I focused on my hand. I thought that if I focused on it, like a Jedi mind trick, it would move. Nope…it still lay there like a dead fish. What I wasn’t noticing was that the left side of my face had started to droop. My eyelid was slowly descending and beginning to close. I was paying more attention to my hand and failed to notice my face melting like Play-Doh left out on a hot summer day. That night the ER physician, a wonderful man I can’t say enough about, came over to conduct what I know now as a neuro examination. In the end, he asked my fiancé how long I’d been experiencing facial drooping. I looked over at him in horror.

What do you mean, my face is drooping? What’s wrong with my face? Tell me what’s happening. I looked at Sidney, who had a reassuring smile but fear in his eyes. My eyes started to well up with tears.

The ER doctor said, Don’t worry, we’re going to find out what’s happening. We’re sending you for a CT scan right away.

After he left, I turned to Sidney and asked how long my face had been drooping. He told me that it had been like that for a bit. I then began to try to fix it. I focused, scrunched my face (or so I thought), and then looked at him. Did it work? Do I look normal?

He looked at me with a soft smile and rubbed my arm. It looks the same, hun.

I immediately started to cry, tears streaming down my face. I had a vision in my mind of what my face looked like. I couldn’t see myself, but I could imagine from the stares I’d been getting and the sympathetic looks on the nurses’ and doctors’ faces that this was bad. I turned to Sidney and asked, Am I ugly?

He laughed, looking on the verge of tears too.