“In The Beginning Was The Bird and the Bird Was Blind.”
Every story begins somewhere, and the story of my blindness begins with a bird.
To this day, I do not know what kind of bird it was, but I remember with vivid detail its crooked feet, its red-flecked breast and its eyes… oh those eyes. I remember specks of colour—maybe red or black?—but what I remember the most is how wrong they looked. Something was wrong with this bird.
Something was definitely wrong.
This bird was dead, having died after flying into our back kitchen window. I’d found him in our side yard and being filled with compassion for this hurt bird and no cares for the safety or cleanliness of such an act, I picked him up and cuddled him in my little hands. My four year old heart broke.
And when I was diagnosed with bilateral retinoblastoma—cancer of the eyes—within weeks, the connection was clear. This, in all truth and sincerity, is what I believed about how and why I became blind:
The bird had cancer and was blind, and because he couldn’t see our window, he flew into it and subsequently died. I touched the bird, caught his cancer and that’s why I became blind.
Of course, now as a woman in my mid-twenties, I understand the childlike ignorance that bore this theory into being; cancer is not contagious, neither is blindness and blindness is not always the result of a retinoblastoma diagnosis. But as a child, I carried this theory as fact with me throughout my childhood and adolescence, and even while I knew the truth of my medical history, a small part of me always clung to the bird. I wanted it to be real, to have an answer for why this happened to me. Follow up genetic testing would prove inconclusive, and with no family history of RB, my cancer effectively came out of nowhere. This bird gave me a reason and a tangible reality to hold onto while grappling with questions and emotions that were too big for a little girl to carry. To believe that the bird gave me cancer was easier than the truth.
How It Really Happened: The True Origin Story
My diagnosis of bilateral retinoblastoma came on April 19, 2001. It was just shy of six weeks before my fifth birthday. Everything I know of this time comes secondhand from my parents—the greenish-whitish thing my mother saw floating in my eye, the appointment with the optometrist, the consult with the ophthalmologist that same afternoon and the diagnosis of retinoblastoma at BC Children’s Hospital a week later.
The year 2001 saw me through several rounds of cryotherapy and chemotherapy, and in November, an enucleation of my right eye. In terms that I understand? My right eye was surgically removed, thus, I became legally half-blind. In 2002, I underwent further treatments and a trip to Disneyland which was generously provided to my family by The Children’s Wish Foundation. That trip holds many memories and smiles in my heart and I hope to share those with you in a future post. But 2002 came and went and I found myself in a back room of the surgical unit, holding hands with my family and ophthalmologist, praying to Jesus for what was about to happen. Then Daddy picked me up and carried me into the operating room. I breathed deep the scent of watermelon and when I woke up, my life had changed completely.
It was January 27, 2003, known in my family as Classy Glassy Day in honour of my first prosthetic eye. As of this writing, I have been completely blind and cancer-free for eighteen years. And while I continue to be followed by a team of medical professionals, I thank God that I have not been given a second diagnosis.
In The Middle… Is The Rest
But now, with the initial cancer treatments in my past and a life lived in total blindness stretching ahead, I live in a feeling of the middle.
I live in the middle of sight and blindness. I have memories of having vision, of knowing my colours and seeing the faces of my family. When someone describes a sunset to me or says that the dog in the park is a golden retriever, I can imagine it because I’ve seen it. And yet, I live in the middle of those memories, clutching them close to my heart yet I watch them fade with every passing day. The longer I live, the more my sighted life becomes a smaller and smaller piece, like an island that appears to be shrinking but it’s merely the ocean growing bigger around me.
I live in the middle of what society expects of a disabled woman and how I try to live outside that box. This is a Pandora’s box that I’m hesitant to open, but simultaneously, I feel is important to explore. I will go into depth in future posts, but sufficed to say that living as a woman with a visible disability brings with it a disturbing disparity that clings to me like a shadow. From society, I often feel an expectation to be an overachieving inspiration for the mere act of living, or a person of whom nothing is expected because I have a disability. I have to fight for accessibility, to be treated as equal, and yet all I want is the same things as you—equality, respect, dignity and a place in our world.
And I live in the middle of a life that is messy and broken, full of joy and lots of green tea. My faith in Jesus Christ guides everything I do yet I find myself struggling against Him because I can’t reconcile the world I live in with the love that He gives to us. I suffer from disordered eating habits where I hyper-focus on healthy ingredients to the point where I go without food for hours or days to avoid eating what I’ve deemed “unhealthy.” My mental health is steadied by medication and I go to therapy every two weeks. I cry during the radio drama production of Little Women EVERY. SINGLE. TIME! I’m an intense personality with deep, strong emotions that I’m learning to embrace. And I’m complex, quirky and valuable, and I have a story that matters–just like every human being.
This is my life. And I’m happy to have you apart of it. While this blog is centered around my experiences as a blind woman, I hope you will take from it much more than that. I hope that through my words, you will find me a person much like you, someone stumbling through life’s challenges and joys and just looking to do it with God and with those I love.