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.

WHAT I SEE AS A FULLY BLIND WOMAN

“So Rhianna, what can you see?”
“Actually, I’m totally blind.”
“Oh. But, you can see something… right?”

Aside from the question of how I became blind, this is the question I am asked most often, by friends, acquaintances and perfect strangers. There are a few facets to my answer, and this is, as always, my own personal experience. Molly Burke, a Youtuber whose channel centers around disability awareness and education, posted this video answering that very question, and her experience living with Charles Bonnet Syndrome. No two blind people have the exact same experience; it’s different for everyone.

Let’s start with the simple answer. Do I have any sight?
No.
As both of my eyes have been enucleated, I have no visual perception–no light or shadow perception which many visually impaired still retain. It’s estimated that 85% of visually impaired individuals have some remaining vision, whereas only 15% are totally blind.
I do not however, see blackness, as is often presumed. If I don’t see light, I must see darkness. I’m unclear as to how you could see darkness, but anyway…

As I grow older and my life with vision becomes a smaller and smaller piece of the puzzle, my visual memories are growing fainter. The colours I see aren’t as bright, and the detail with which I saw giraffes, flowers and my family’s faces have lost much of their definition. Even so, I am grateful that I have these memories at all: The average age for a retinoblastoma diagnosis is two years old or younger, leaving the individual with very little visual memory, if any. I was diagnosed at four and a half, and thus, my memories of sight were well-established. Those early years laid a solid foundation for how I would visualize my ever-changing world as I matured and moved into environments of which I had no visual recollection.

In these circumstances, it’s up to me to paint the picture.
Here are my paintbrushes:

• Visual description by a sighted person
• Tactile exploration

Visual Description

Having an object or environment verbally described to me is often my first go-to for understanding my surroundings. Being as clear and as detailed as you can be gives me the best chance at painting an accurate and vibrant picture. Here’s an example:

At the end of 2020, I was searching Facebook Marketplace for a place to live as I was planning on moving to a new city in the new year. Many postings relied on photos to attract potential tenants, but I was focused on the written description the seller wrote alongside the pictures. I came across a suite which was described as having a “small” bedroom, “floor-to-ceiling” windows and a “large” backyard. I’ve enclosed small, floor-to-ceiling and large in quotations to make a point: These gave me a beginning off of which to build my image of the suite. Since those descriptors fit the type of home I was seeking, I then asked my parents [who I was living with at the time] to describe the photos.
The space was clean, cared for, and as it was in my price range, I decided to move ahead and continue a conversation with the landlord. Not being able to visit before moving due to travel impracticalities and Covid-19 restrictions, I requested that she send a video walkthrough of the suite which she happily supplied. While watching the video, my father was able to describe the living space to me, allowing me to add a framework to my thus far, blank canvas.

“Okay, Rhianna,” he said, watching the video over a few times to make sure he described it correctly, “when you walk through the front door, the kitchen is immediately on the right. It’s like a little hallway. On the right side is the fridge and freezer–fridge on top and freezer on bottom–and then there’s a bit of counter space before the stove. Keep going along the right and there’s more counter space. Now, it turns to the left and here’s the double sink. This is straight ahead from the entrance into the kitchen. Coming back along the left side of the kitchen, which is now on your right, you have a long counter–it’s counter space all the way back to the front. The fridge and stove are opposite this counter.”

Can you see it?
Me too.
My parents proceeded to walk me through the rest of the suite, the living area, bathroom, bedroom and the stairs outside leading down to the backyard. My painting was looking great!

But it wasn’t enough. Not quite yet. Oh, it was good enough for me to apply, and be accepted, to rent the suite. But I was excited to move and complete my picture and add the tactile details it needed to bring it to life.

Tactile Exploration

When I arrived at my new home three weeks later, I was chomping at the bit to fill in the details of my picture. Daddy had done a good job of describing it to me, but I was ready to explore it for myself.

As I moved about my new home, I discovered that the cupboard doors didn’t close flat against their neighbouring cupboards, so to avoid a headache, I’d have to ensure I closed them after I was finished. I found out just how big the floor-to-ceiling windows really were, and how to operate the blinds. I learned how to adjust the temperature, the ceiling fan, and where the electrical outlets were. These details gave my painting nuance and a fullness that could only be gained from physical hands-on exploration.

Exploring my environment tactually is my preferred way to learn my surroundings. Not only is it enjoyable, but satisfies my innermost desire to be independent and self-sufficient–a vital feeling for a disabled person to have. But a combination of external, visual description and independent, physical discovery offers me a full and immersive picture of my world, which for me, is the ultimate goal.

It’s A Movie In My Mind

I don’t believe that my “sight” is much different than yours. I am constantly taking in information, adding and subtracting details to create a beautiful image of the world around me. The difference is merely that I’m taking it in through my remaining senses–hearing, smell, touch and taste–rather than primarily through the eyes.

This is how I visualize everything, whether I know the setting or not. I know my own home inside and out, but what if I don’t know the store I’m heading into to grab groceries? As I go, I take in details such as smells, the feel of the flooring, how much space is around me [is it cramped or open], big objects like shelving units, display cases etc… all of these details help me to create an image, and I can recall that image the next time I’m in that location.

It’s a movie that never ends! It constantly shifts from scene to scene, and with each, more detail is added, bringing the world of that movie to life.

So, contrary to the assumption that I must live in blankness or darkness because of my blindness, I live in a vivid, colourful world, just like you. I may have to gather my information by different means, and sometimes it isn’t always spot on and might take a few tries to memorize my surroundings, but is lacking in nothing. My world is full of vibrant imagery, bright colours, and as much joy as ever–after all, joy is found in more than visual ability.

Just take a look around, or simply close your eyes, and you’ll see. Go on, I’ll wait.