How it Started
My journey began before I was capable of having conscious memories. When I was two, my mother noticed something off. I can only assume it was my poor balance. Whenever I tried standing, I’d struggle.
In the following years, the oddities persisted. My mother continued taking me to the hospital, but each time it was waved away by my pediatrician as being a flu.
Now, my parents are immigrants from Portugal. They knew little English when they first came to Canada and, thus, were limited in communicating. My cousin had a better grasp on the language but wasn’t privy to how to approach what was happening to me or the proper questions to ask. It seemed hopeless.
Then, after two years, my parents saw an herbal doctor in Toronto. He spoke Portuguese, too. My mother was finally able to tell someone the full story in her native dialect. It was the first time it would be relayed in a cohesive manner.
I was four at this point. In the two years prior to this visit, my pediatrician continued to insist it was a flu. After my mother and the herbal doctor spoke, the herbal doctor turned to me, asking me to kneel before attempting to stand.
I did as he wanted and unsurprisingly, I was wobbly. He had an immediate inkling as to the issue—a brain tumour. He told my mother to go to the hospital, demand a CT scan, and to not leave until I got it. Now, it’s worth noting that none of my family members knew what that was. My pediatrician never mentioned it once. No, he stuck to the flu narrative.
She did as requested but still, the doctors refused. As a child, I guess radiation could cause complications. Thankfully, they eventually gave in. What they found was a tumour that had quietly grown to the size of a grapefruit. I was rushed to the operating room.
After the operation, I wasn’t meant to walk or talk, and it was thought I’d forever lack basic human functions. The early years of my life had me bound to a wheelchair.
Fun fact—my dominant hand used to be my right but, while going to physio and relearning how to use my body, I became ambidextrous.
My neurosurgeon referred to me as his miracle child. I wasn’t supposed to survive, to live to be an uncle, be in relationships, or have a life. I’ve done all of it. I defied the odds.
At 18, I was discharged from Hotel Dieu Hospital. I wouldn’t be followed again until I was about to leave for college. I hooked up with POGO and through them, I got a great counsellor in the POGO School and Work Transitions Program named Sarah.
How it’s Going
I’m 33 now and still have ill effects from the cancer. I’m traumatized, have difficulty keeping friendships, and have severe anxiety, as well as depression. I’m a mess. My memory is awful, my balance is terrible and my right side is weak. The nerve endings on my right are damaged, with my facial ones severed, giving me permanent Bell’s Palsy. The psychological effect is immense. At one point I was in cognitive behaviour therapy but the gains I made there were lost once those sessions ended.
At one point, I was even suicidal. I have scarred arms from that. I’m lost. I’m scared.
I need support, psychosocial and so much more, and I know POGO can only do so much. Sarah has put up with me for over a decade now. With her help, I’ve tried to find a job, but I still have trouble because no one wants to hire a liability
I live in solitude and isolation. I still rely a lot on my parents so, once they pass away, I fear I’ll be homeless. As someone with disabilities, I feel society has cast me aside. All of my difficulties are seen as excuses despite being medically justifiable. It’s a daily fight with unfair judgments.
Luckily, in advocating for me, Sarah has recently helped me to become part of the POGO AfterCare Clinic at Kingston General Hospital. I have been able to see a pediatric social worker who kindly referred me back to a brain injury clinic and I’m now being referred for ongoing psychosocial support. Even with Sarah’s support, it’s still a slow burn.
Regardless of my disabilities, declining mental health, and deteriorating brain tissue thanks to radiation treatment, I’m fighting to build a life. I write reviews and have cultivated relationships with companies. I’ve also written three fantasy novels. They’re unpublished, but I hope to get that rectified someday. I’m still beating the odds.