NINETEEN YEARS AGO TODAY…

I Became Blind

Nineteen years ago today, I took one last look around the Children’s Hospital with blurry vision.

I saw my family, together with the ophthalmologist, holding hands in a circle as we prayed for what was about to happen.

Nineteen years ago today, my Daddy carried me into the operating room and laid me down on the operating table.

And I smelled the watermelon scent that always lulled me to a blissful, dreamless sleep.

Nineteen years ago today, I became fully blind.

And nineteen years ago today, I became cancer-free.


This day goes by several names—my blindaversary, my blind birthday, Classy Glassy Day, but no matter what I call it, it will always be a day that I celebrate.

Yes, it’s the day that I became blind. It’s also the day my little body was free of the retinoblastoma. But this day acts as a marker for much more than that.

It reminds me how far I’ve come.

It reminds me of what my family and I went through, because cancer and blindness isn’t just my story—it’s theirs, too.

It reminds me that everyone who has a disability has a story, and each of those stories are unique and worthy.

It also teaches me things that I wouldn’t have learned otherwise.

It taught me the value of my health, and how nothing in this life can be taken for granted.

It taught me to be thankful for what I have, and who I have.

It taught me that my story has shaped me for the better, that I wouldn’t be who I am without having experienced what I did.

And it taught me that God is here through pain and suffering, and sometimes, it’s through those times that He’s the most visible.

So, happy Blindaversary to… me! I’m excited for what the next year will hold. How will I grow? How will God shape me into the person He wants me to become? I’m excited to find out.

Oh, and I forgot to mention one thing that this day always reminds me to be thankful for:

It isn’t the end of my story.

THE QUIET SIDE OF CANCER SURVIVORSHIP — LIVING IN A WORLD OF WHAT IF

January 27, A.K.A. Classy Glassy Day to my family in honour of my first prosthetic eye, is the day each year that I celebrate being cancer-free. Although I underwent a few rounds of precautionary chemotherapy after the final enucleation, this day will always be near and dear to my heart. After all, it’s the day that I became blind and the cancer was eradicated from my tiny body.

Yes.

And no.

True, the cancer was gone and that part of my life was in the past. It was now full speed ahead into learning braille, using a white cane and adjusting to life as a six-year-old without sight. But what everyone failed to mention was the fact that what I had just endured was traumatic, and that I would live with that trauma for the rest of my life. Yes, the physical cancer was gone, but the psychological ramifications would be a constant fight.

I was in middle school, deep in denial about my blindness, when I was handed a book of reports written by a fourth-grade class… about me. I flipped through it, astounded at what I read. I recall one report vividly which stated explicitly that the doctors expected me to be depressed, but I wasn’t.

“I was supposed to be depressed?” I said to my mom, shocked. I hadn’t heard about this. Why did they think that? I wasn’t depressed.

The Clock Syndrome

“I’m going to die,” I announced to my therapist one afternoon when I was 20. “I’m not going to live past 22. I’m going to die young. You just watch.”

Spoiler alert: I lived, and am now a grand ol’ 25. But what was the deal with 22? It’s hard for me to explain without fearing that you’ll think I’m crazy, but if I write for anything, it’s to normalize the unspoken experiences that many people are too afraid to say aloud.

Growing up, I saw my future stretching before me like a road. I could see the twists and turns and the landmarks that I would pass by on my journey through life—high school graduation at 18, travelling abroad at 19, earning a university degree at 22, and then—
Then what?
That’s where the road stopped. I had no more visual concept of what my life past university could be. It was blank.
To me, the emptiness of the road meant there was no road at all.

But I kept this to myself. To be “normal,” I dreamt about what life might hold for me, and I even planned parts of it. I wrote a list of my favourite baby names, I designed wedding invitations when I was 15, and I speculated at what kind of old lady I’d be. But deep down, I knew it would never happen—I would die before I got the chance.

My therapist and I called this the Clock Syndrome. Many days, it was a physical weight on my shoulders and I felt the tick tock, tick tock, thumping in my brain like a hammer. “Don’t waste your life,” it whispered. “Pack in all the experiences you can now, before it’s too late.”

As a result, I raced through my late teens and early twenties. I graduated from university in three years, enduring a five-semester streak that ran me into the ground. I pressured myself to get married and have children before I lost my opportunity to, and I made myself a deadline to be a published author by 25.

The fear that I would die young was paralyzing.

And every time I contemplated my inevitable death, it was because of cancer. I had it once, of course I’d get it again. And I wouldn’t be lucky enough to survive twice. But what kind of cancer? And when would I get it? Would I have symptoms? What if I had it now and just don’t know it? Thus, I fall into what I term “cancer spirals,” and they look a little something like this:

  • I feel fatigued. It must be leukemia. Wait, where did that bruise come from? Am I having a night sweat or am I hot because I sleep under four blankets? This hasn’t happened before—it must be cancer.
  • I’m not on my period, so what’s this discharge? Is that a sign of ovarian cancer? Cervical? Have my periods been extra painful lately? Wait, was my period on time last month? It must be cancer… I’ve always been regular.
  • My heart is beating faster than normal. I heard that advanced lymphoma can cause rapid heartbeat. Let me check the results from my last blood test; is anything out of the ordinary? What if the blood test doesn’t catch it, and then it’s too late?
  • Do I want to undergo chemotherapy again? What about immunotherapy? Where do I get a wig? Maybe I should get one now so I have it… just in case.

If you’re exhausted reading that, welcome to my brain. These cancer spirals are as normal as dipping chocolate chip cookies in milk. I don’t even have to have symptoms to fall into the world of medical articles, diagnosis stories, the latest experimental cancer treatments, and which secondary cancers to be on watch for. I live every day, expecting to be thrust into this reality. Yet, it mightn’t ever happen. I might die before I turn 26, or I may live another 70 years in perfect health.

But, what if I do get cancer again?

It’s that what-if that keeps the clock running. And every day, I wonder if I’ll ever outrun it.


September is Childhood Cancer Awareness Month. It’s a busy time, with fundraising for cancer research and programs to support the children and their families taking their well-deserved place in the spotlight. But amidst all the activity that September brings, take a moment to remember the quieter side of survivorship.
Remember the ones who live each and every day with the fear of relapse and recurrence. The ones who won’t tell you that they lay awake, examining their body for any potential threat. The ones who have to leave the room because the smell of bananas triggered a memory from the hospital. The ones who have trouble remembering things because of the chemotherapy. The ones who you didn’t even know had cancer.

Take a moment this September and remember us. Our stories are still unfolding, and at least for me, all I pray is that with each page turn, every childhood cancer survivor will know that they are loved, supported and heard, no matter what happens.

IN THE BEGINNING

“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.