Portrait: Amy

Where Amy's story began

I had my hearing tested and discovered that I had lost most of my hearing in my left ear. The audiologist sent my report to an ENT, who told me that I had probably had a viral infection and took my hearing out. I informed him that I had not been sick. He requested that I have an MRI, but it wasn’t scheduled until January 2020.    In the next few months, my face started twitching. It didn’t make sense that only my left cheek would twitch. I did a Google search and “acoustic neuroma” kept popping up. My symptoms included hearing loss, facial twitching and facial numbness. Something wasn’t right.    I contacted my family doctor and ENT to discuss my new symptoms. Both doctors told me I was fine and needed to wait for the MRI. They thought it had just been a viral infection.  

At this point, I felt like I was crazy. Did I really make up these symptoms and believe I had a brain tumor? Was it all in my head? 

 

Establishing a diagnosis 

Since losing my hearing, I had a hearing aid. It just wasn’t working the same. I figured it was broken. I went to the audiologist and figured out I had lost more hearing on my left side. My results were sent to my doctors. This was November 2019. 

An MRI was booked within a week or so. I knew something was wrong when the nurse asked if I could have the dye inserted in my arm. I knew there was a tumor. I spent the next few days trying to keep myself busy at work. On Friday, December 13th, 2019, I was informed that I had a brain tumor. It was the reason for all the symptoms I had been experiencing.

I was devastated. I completely shut down. I had gone from thinking I was crazy to being right about the brain tumor. I was an emotional mess.  

At this time, I knew the only way I could get through this was to be logical and push down my emotions. I thought that was me being strong. I turned into a void.

Brain surgery 

I had the surgery in February 2020. The tumor was close to my facial nerve and the nerve was damaged during surgery. I am still unable to smile. I was sent home just a few days after. I was sick but the staff told me I was fine.

I didn’t feel right. However, how was I supposed to feel after brain surgery? 

I went home on the Saturday. The next day I felt sick. My mother ran to get me a bucket. I said I didn’t need it. I then seized on my bed. I felt like I had been pushed into a pool and I couldn’t breathe. My parents were standing there helpless, as they watched their daughter have a seizure.    The EMTs came in and asked me if I could lift my arms…I couldn’t. I was unable to talk and was told I had 'word salad'. At the hospital, I could see the fear in my parents’ faces. I couldn’t talk. I screamed in pain and then the next few days were a blur.    I had a stroke, and remember waking up a few days later. The nurse asked me what my name was. I thought it was a silly question. However, I could not say my name. I knew I was Amy, but there was a connection lost between my brain and my mouth.  I had expressive language aphasia.

Feeling trapped in my body 

I was lost and unable to communicate with the outside world. Simple jobs like asking to wash my hair or ask for juice were taunting tasks for myself. I had never felt so incompetent. Was I going to spend my life this way? I was only 33. I couldn’t get answers from medical staff because I couldn’t talk, due to the aphasia. I was trapped in my own head.   

As days went on, I started to communicate more. I could say my name when I was asked. When I was asked where I was, I would say “sick people.” I knew it was the hospital, but my brain and mouth still couldn’t work together. When I was sent home from the hospital, I was scared. I still didn’t understand what had happened to myself. Was I ever going to be normal again? How was I going to be a teacher? How could I become a burden to my family? 

Recovery during the pandemic 

The next few days at the hospital were intense. It was February 2020, and chaos was about to happen in the world. I was sent home about a week after my stroke. I could barely speak, and half my face didn’t work. My whole world had changed. 

When I recovered at home, I would hear about COVID-19 and it seemed like the world was ending. I felt like I was in a horror movie. I had brain surgery and then the world changed. I remember thinking, ‘Did I ever wake up from the stroke? Is this all some messed up dream?’ I would rewatch TV shows with the captions on to try to expand my vocabulary. I was a teacher. So, in order for me to work again, I needed to communicate.    

Since my recovery happened during the start of Covid, it was challenging to get help. I did start going to a rehabilitation center after the stroke, but after a few sessions, I was told that the center was closing due to Covid. It was especially difficult when I still suffered from aphasia. How was I supposed to advocate for myself when just weeks ago I couldn’t say my own name? I was eventually able to see a speech pathologist. It was done online, but it was better than nothing. The work I was given reminded me of work I would hand out to the students. It was kind of embarrassing. My recovery also consisted of me watching old TV shows and movies to try to learn to communicate again. I know it doesn’t make much sense, but I didn’t know what to do. 

I was alone. Trapped in my own head, waiting to fully communicate. I deserved to get better and my family deserved it too. My mom sat with me every day. I was going to be strong for her. 

 

My advice to other survivors 

When I was recovering, I would always tell myself that in order to get better, I had to stop being bitter. I was angry at myself and the medical world for what happened. I didn’t want to live my life being a burden. I wanted to live and work again. Through this experience I learned it is okay to be vulnerable. To not shut down and freeze. I became a stronger person. I went back to work as a teacher supporting students with high needs. I became a more empathetic, kind and thoughtful person. I still cannot fully smile, but maybe I can still be a positive person in someone’s life. Maybe my story will be the strength someone needs to go on. 

Join SameYou in supporting brain injury survivors like Amy on their difficult path to recovery. Your help makes a difference. Donate today.