[Christina, the person behind the DearGord tribute website, forwarded me this open letter to Gord Downie and asked that I spread the word. – AC]
Dear Mr. Downie,
I’ve put off writing this letter for a few days. I take a piece of paper and a pen and just stare blankly at it until I decide there are no words to describe what I want to say. Today, because of your diagnosis, I came out of the dark and shared my story. I am a brain tumour survivor of 15 years. I remember my diagnosis like it was yesterday and there is nothing I can say except “I know.” I know it’s not fair. I know the feeling of “why me?” And I know the feeling of being terrified.
I was 10 years old, just some kid who played soccer. The kid next door who’d come over and swim in the pool. I was also the kid who had double vision, headaches, loss of strength in my legs, slurred speech, extreme fatigue, and nausea. The doctor’s diagnosis was that I either had an iron deficiency or that I was anorexic. I was 10 and I had no idea what that even was.
One day while visiting friends, I passed out and had a seizure. I woke up sitting on someone’s lap with the paramedics talking to me. I had zero idea as to what had just happened but all I knew was that I had to go to the hospital by ambulance. My friend and her mom met me there so I wouldn’t be alone until my parents came from their jobs. I wasn’t allowed to sleep and my friend sang me the most godawful songs just so I’d stay awake.
Eventually, the doctor came in and ruled it as a heat stroke. That was the second misdiagnosis. My godmother, who luckily worked there, got mad and ordered the doctor to send me to paediatrics. I met Dr. Couture for the first time, and all he did was look into my eyes and he saw a shadow. He then sent me to the doctor to see if he saw it too, He did. That morning, I had a CT Scan, and that afternoon he came to see my family and I. With the most sympathetic look on his face he said, “You are not anorexic. You do not have a heat stroke. You have a brain tumour. Go home, back your things and go to the IWK in Halifax, they’re waiting for you.”
I’m sure you understand when I say my entire life, as short as it had been, flashed before my eyes about 10 times at super speed. I was just #14 on the soccer team, the kid who played defence. That’s it.
Why was this happening to me?
So, a trip home to pack, and a 3-hour drive to Bedford, we were at my aunt and uncle’s house. My Uncle drove us to the IWK and my dad sat with me in the back of their van holding my hand the entire way to the Children’s Hospital. I was admitted right away and stayed in the 5 East Wing in room 506. That room will always be embedded in my mind.
The next morning at 10am on August 18th, 2001 I had my very first MRI. Bernadette was the nurse who came with me. She was my favourite. I wasn’t really scared because they told me my mom could come with me. She held onto my foot the whole time. That afternoon at 2pm I was told it was time to get ready to go down to surgery.
My parents were told you may never walk again which for me it meant, no more soccer, no more swimming, nothing. I was told I could be paralyzed from the neck down, which meant I’d never play piano again. The list went on and on about the possibilities of what I may come out with, if I ever came out at all.
Ten hours later, I came out and wiggled my little fingers and my toes and realized all I came out with, is the loss of strength in my right arm. That led to physio. While there are things I can’t do anymore, there are lots of things I can do–and will do. The silver lining is that I learned to do a lot of things with my left hand so I was a self-taught ambidextrous and just ran my first 5K on May 21st.
I wish I could tell you that I’m sorry, but I know. Sorry doesn’t cure anything, and in my case, I felt pitiful when someone said it. I was not my brain tumour. I just had a brain tumour.
My tumour was a pilocytic astrocytoma. This tumour is found in children in the first 20 years of life. It was wrapped around 98% of my spinal cord and was removed completely. And I feel guilty for saying that because it’s not the same in your diagnosis, and It’s not fucking fair. Which is partly why I’ve been staring blankly at this paper for three days now.
I won’t be able to make it to your last concert and it will be a huge regret. But If I could, I would say thank you. Thank you for being a part of my life in a huge way, especially the last three days. After my run, you got your diagnosis, and I decided to share my story after 15 years. It even made it on CTV News.
Before you, we were left in the dark and there was no awareness. Now there is. It’s not good to hear in any situation, and I hate those circumstances bu, you have inspired me to share my story, and for that, I thank you from the bottom of my heart. I never had something I was truly passionate about until now and in light of this, I want everyone to hear my story. I want everyone to hear your story.
I’m some girl from Nova Scotia and you’re Gord Downie, the most iconic Canadian musician to have ever lived. But in this one sense, we are just two people who got sick. But always know that the people who have had this experience are all behind you 110%.
I know you may not ever see this but if I could say one thing to you, it would be that you are not alone. Keep fighting with everything you have left. And last but not least, thank you.
The girl from Nova Scotia
A brain tumour survivor.