I HAVEN’T WRITTEN IN TEN WEEKS, AND THIS IS WHY

For better or worse—and mark my words, it’s most often for worse—I am an all-or-nothing, idealistic pessimist. Just ask my therapist: I’m either a success or an utter failure. I either eat healthy, or one cookie deems me a lost cause. I either write consistently, or I am not worthy of the title.

When I started this blog, I had dreams of writing posts twice a week, growing a community of readers and allies, and bringing awareness to the realities of life with a disability. I still have those dreams. But sometimes, life wakes you up with a freaking loud alarm, and those dreams are put on pause.

So many times in the last ten weeks, I have sat down to write a post and nothing has come. I stare at a blank page, then wait for the tears. I slam the laptop shut, debate throwing it out the window, decide against it, and go take a burning hot shower and wonder why I thought I could do this. How could I call myself a blogger if I let my darling sit untouched for ten weeks? It deserves better, and so do those that honour me by reading it.

But in the past two and a half months, words have eluded me. I’ve cried, and when there are no more tears, I’ve just sat in the silence, wondering what I’m supposed to do now. It reminds me of the book of Job, when, after he lost his children, livestock, his home and his health, his friends “sat on the ground with him for seven days and seven nights, but no one spoke a word to him because they saw how intense his suffering was. Sure, I haven’t endured loss on that scale and I’m thankful for that. But I also want to acknowledge the grief that I am experiencing.

The Goodbye

On May 17, my guide dog, Cricket officially retired from his life as my working Leader Dog. In reality, he had not guided me for weeks and in my heart, I knew it was over. But now it was official and I couldn’t deny it any longer.

I put myself full throttle into “get it done” mode so that I wouldn’t stay in “cry all the time” mode. I applied to CNIB Guide Dogs, Guide Dogs for the Blind, and re-applied to Leader Dogs for the Blind for a successor guide.

And knowing that I didn’t have the physical space or the financial capability to care for Cricket in retirement as well as a new, working guide dog, I had to make the decision of where Cricket would live. I decided, together with Cricket’s puppy raiser, that giving him back to her was the best thing for him. God had affirmed that in both our hearts, but this decision brought its own challenges, namely how to get Cricket back home to Michigan.

Due to Covid-19 and the travel restrictions that both the United States and Canada set in place, getting Cricket to his new home proved much more challenging than expected:

• His puppy raiser could travel to Canada to pick him up as she was fully vaccinated, but she could not take him back on the plane as she was not his handler.
• I could not travel to Michigan as I was not fully vaccinated and could not go through a two-week quarantine upon return.
• We didn’t feel comfortable putting Cricket in cargo, as he needs to be medicated on flights to mitigate anxiety, so sending him alone was not an option.
• We applied with Puppies in Flight, a program through American Airlines to transport service dogs with an employee, but nothing came of it.
• We tried to get permission for his raiser to become his temporary handler for the duration of the flights, but that was not possible.
• We asked if a LDB trainer could transport Cricket, but again, due to restrictions, that was not feasible.

Once I knew that I would be fully vaccinated and able to travel without the need to quarantine by August 8, the plan was for me and Cricket to fly to Michigan, get him acclimated to his new home and come home… alone.

It was frustrating practically, but it was even harder emotionally. I had come to terms with Cricket retiring as my guide, but I was not able to grieve the loss of his companionship until he was gone, and not knowing when that would happen became almost unbearable. By July, I was having trouble sleeping. The feelings of guilt over leaving him home for hours at a time since I couldn’t legally bring him into shops, restaurants or on public transit made me feel like a failure as a handler. I wasn’t giving him the life that he deserved.

I returned home from Michigan on August 13. Cricket is now in his new home and I am able to grieve. But dear Lord… it breaks my heart.

The Other Goodbyes

Out of respect for the privacy of those that I am referring to, I will not go into detail here. But as I’m sure others have experienced throughout the last year and a half, differing views on the Covid-19 pandemic have caused significant conflict in relationships. The decision to get vaccinated or not, to wear masks and physically distance, among others, have divided families, friends, partners and communities.

And now, it’s happening to me in some of my close friendships. I still love and care for these people, but when our opposing views propel our lives in different directions, it is hard to know how to maintain a respectful, mutual, loving relationship. When the conflict is something as significant as the pandemic, how do you go forward when those closest to you do not agree?

I don’t have the answers. All I know is how it feels to be in the middle of it. I’m questioning how easily I trust others, if I have even been a friend if I can consider ending it, what it looks like to love like Jesus, and whether it is “christian” to let these differences influence the relationship. I cry myself to sleep because I feel, once again, that I can’t do friendships the right way.

The pandemic has caused so much grief in countless ways in our world. Is it a test from God? Am I loving those around me with His love? Am I doing enough?

Am I failing the test?

I’ve Had Enough of Saying Goodbye

We were walking to the lake yesterday afternoon when I stopped, threw my arms around my boyfriend and with tears in my eyes, said, “it’s starting again.”

“It” is my depression. As I’ve struggled with my mental health for years now, I’m very aware of my personal indicators of a depressive episode—I’m not enjoying activities that I love in the same capacity that I was even a few weeks ago, I’m not initiating get-togethers with friends, I’m sleeping late.

I’ve had enough of saying goodbye. To Cricket, to close friends.. what’s next? I’m exhausted. My brain is exhausted.

Is it starting again? Can I work to stave it off, even just a little bit? Maybe my medication will help this time, seeing as I wasn’t taking it the last time an episode came. I will have to work hard to eat. I will have to drag myself out of bed in the mornings and tell myself out loud that yes, there is a reason to get up today even though I don’t have to take Cricket out to pee or go for a walk.

And I will also have to give myself grace. And that will be harder than any of the others. But with the love of my family, my partner, Jesus and my medication, I will make it through.

But I am scared.

So, What Now?

Things feel very fragile right now. I feel like I’m about to break, and it must be by God’s grace, that I’m holding on. He’s here, and He’s blessed me with a support system and people who love me and hold me up when I can’t do it by myself. But as I’ve been learning to do in therapy, I’ve been trying to hold all of my opposite emotions. I imagine that in my left hand, I’m holding the love, the support and the faith that gets me through the tough times. And in my right hand are the tears, the grief, the pain and the sadness.

I want to write, and I’m hoping that this post will help break through the wall that’s built up over the past ten weeks. This blog, and you, my readers, are too important to me to let you go again. But there’s no telling if life’s alarm clock will sound again. But be assured that even if I am silent, I’m still here, and I’m doing my best.

That’s all anyone can do.

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.