MY BLIND GIRL ESSENTIALS LIST

If writing is like my Daddy’s homemade pancakes for Sunday dinner, making lists are the maple syrup I drown them in.

I make lists for everything–to-do lists, grocery lists, clothing inventory lists, even lists to organize my lists. Yes, I am that person. My brain thrives on it to keep me organized, and… it’s fun!

So, I thought it might be fun to share a list with you of the six things that are essential for my life as a blind woman. This is of course, not a comprehensive list and not meant to speak for all blind and visually impaired people, but these are the things that make my life a little [or a lot] easier and I cannot live without. Here we go!

I. My Guide Dog

Arguably the most important thing on an essentials list for any blind or visually impaired individual is a mobility aid. For many, this is a white cane like this one that I own from The Braille Superstore. For others, a guide dog is their aid of choice. Some rely more heavily on the assistance of others through the use of sighted guide, a technique wherein the sighted person offers guidance by having the blind individual hold their elbow. And for others still, their remaining vision is enough to see them safely about—visual impairment is a spectrum and not every person with an impairment needs a mobility aid.

In becoming blind at six, I was taught to use a white cane. I learned various techniques for maneuvering through my environments, both at school, in my neighbourhood and in the broader community. The skills one learns with a white cane are invaluable, and are necessary if, like me, you wanted to transition to working with a guide dog.

Now, I work with a guide dog, and it is only thanks to the dedication of my orientation and mobility [O&M] instructors and my own perseverance that I’m here. For me, a guide dog is undoubtedly the best decision for my mobility needs, but it is not for everyone. However, having a reliable mobility aid is non-negotiable for the safety of a blind individual.

II. My iPhone

My iPhone is an invaluable part of my life, and not merely for entertainment purposes. Sure, I play my fair share of Battleship on Blindfold Sea Battle, but it is a vital tool for my independence, safety and wellbeing.

There are several apps that I use on a daily basis to be more independent and self-sufficient and help my life to run a bit smoother on the whole. These range from apps that offer sighted assistance for varying tasks, to navigation, and apps with AI [artificial intelligence].

Here are three apps that I use daily and would be lost without:

Seeing AI — This app has so many features that I love. Being fully blind with no light perception, I make regular use of the Light channel which outputs a tone which increases in pitch when pointed in the direction of more light and decreases when it becomes darker. This is awesome for knowing if I’ve left my lights on by accident! This app is also how I take my own photos, as after I snap a picture, Seeing Ai describes the photo for me–for example, when taking a photo of my dog on his bed, the app has said, “A dog lying on a rug.” Seeing AI has the capability of reading product labels and pages of text, making it handy for distinguishing between food cans, boxes and packages or incoming mail. For all these features and lots more, it is on the homescreen of my phone for quick access.
Moovit — This is a navigation app that helps me to feel confident in planning travel on public transit independently. Enter your starting location and a destination, and the app maps out the route, including all stops and arrival/departure times. While on the bus, you can monitor which stops you are passing, making it easy and efficient to get off at the correct stop. It’s fully accessible for blind users and is my main navigation tool when out and about.
Microsoft SoundScape — Another navigation app, SoundScape assists me while out on a walk by calling out the names of the streets I pass and the intersections I’m approaching. It can mark locations that you travel to regularly, and will describe your immediate surrounding and any landmarks in the vicinity such as parks, schools or community buildings. This app has saved me on more than one occasion when I’ve been out walking and gotten myself turned around; I use the app’s descriptions of my location to reorient to the correct direction and continue on safely. An absolute must-have!

III. A Perkins Braille Writer

Braille is an essential part of many blind individuals’ lives. However, it may surprise you to know, and saddens me to no end, that “fewer than 10 percent of the 1.3 million people who are legally blind in the United States are braille readers.” In my life, I’ve come to adore braille, finding it absolutely essential in becoming independent. It promotes literacy skills and gives me greater access to education.

Having a way to produce braille is a very important part of my life as a blind woman. While in school, I used a Perkins braille writer like this one but only recently received one of my own through CNIB [Canadian National Institute for the Blind]. Nothing makes me quite as happy as the satisfying sound of braille being impressed onto the paper by my own fingers and then being able to instantly read pages of handwritten braille… it gives me chills.

IV. My Braille Bible

Because of my love for braille, a hard-copy, braille Bible definitely has a place on my essentials list. My first Bible was this 37-volume item produced by Lutheran Braille Workers, but after years of wear and tear and flattened dots, I now read this beautiful, hard-cover Bible in New King James translation. It’s big, inconvenient to store and nearly impossible to take along outside the house, but I find it easier and more enjoyable to read in this fashion rather than simply listening on audio–it’s a more immersive experience and something I wouldn’t trade for the world.

V. Tactile Dots

While seemingly small, tactile dots play a significant role in my day to day life. These dots, varying in their size, texture and shape, are used in a multitude of ways. From marking the buttons on my microwave, to the temperature controls on my oven, to the cycles of my washer and dryer, these dots are invaluable. I’ve found them at stores dedicated to adaptive equipment for the blind, or simply at the local dollar store. They needn’t be anything fancy, but without them, I’d be lost and much more dependent than I like to be.

VI. Melatonin

Melatonin is a hormone produced in the brain which helps to regulate the wake-and-sleep cycle. Because light intake is directly related to melatonin production, totally blind individuals like myself often struggle with keeping a steady circadian rhythm. Struggling with sleep as a preteen, my ophthalmologist recommended I take a melatonin supplement each night to help keep my sleep pattern on track, and I’ve taken it every night since.

As a teenager, I came close to having Non-24-Hour Sleep Wake Disorder, a condition that “causes sleep and wake times to get pushed progressively earlier or later, usually by one or two hours at a time. Over days or weeks, the circadian rhythm becomes desynchronized from regular daylight hours.” It’s a very disruptive sleep disorder and taking melatonin nightly is how I’ve maintained a sleep schedule which keeps me functioning at my best. Though melatonin affects every person differently, I’ve found absolutely essential to my health and wellbeing, and I’m lost without it. I personally recommend Nature’s Harmony, though keep in mind that I speak only from personal experience and have no medical background. This is merely what works best for me.

There you have it, my blind girl essentials list! I hope you had fun reading, because believe me, I had more fun than you’d think writing this list for you!

So, what’s on your essentials list? Let me know in the comments.

I’M STILL BLIND WHEN THE LIGHTS ARE ON

According to medical professionals, I’m blind. My optic nerve has been removed, my hazel eyes have been hand painted and my faithful sidekick is a cuddly, golden lab guide dog. I would say I qualify as a blind girl.

I also struggle with depression and anxiety. Now, I have not been given any medical diagnoses for these. At times, this has been frustrating because there are those people who require a diagnosis before they believe it’s real. At times, it is liberating because it gives me hope that I don’t have to live within the label that so many ascribe to those who have official diagnoses.

And there is one more thing I should mention before we go any further. I am a devoted believer in Jesus Christ, and my faith has made all the difference.
But when you take my faith, blindness, depression and anxiety into one and try to reconcile them with each other, that’s where many people run into roadblocks. Especially those people in the church.

The church has been my home for my entire life and I have found much love, encouragement and compassion there. However, I know there are sadly, those within it that do not embody the deep love, encouragement and compassion that I was shown. And they, among others, are who I hope will read this.

No one would deny that I’m blind. We’ve covered this. My prostheses are enough evidence of that. But because I cannot offer physical evidence of my depression and anxiety, some would see this as evidence itself of its invalidity. And to those who doubt, I will say only one thing:
I’m still blind when the lights are on.

Within the church, I’ve encountered varying views on mental health struggles, and unfortunately, many are negative. Here are some:

“You must not pray hard enough.”
“God is a god of joy. Depression is the opposite of joy. Are you truly following God?”
“He can take away your anxiety. Just ask Him.”
“The Bible says not to worry. Having anxiety is a sin.”

To those who hold these views, I offer you this scenario:

I walk into a room and am searching for a chair I’ve been told is there. I know to look on the left side of the room, but I don’t know where along the length of the wall it will be. A stranger comes into the room behind me and seeing me slowly searching the space, exclaims: “Oh dear! You’re blind! Here, I’ll turn on the light. There, that’s better. Now you can see where the chair is.”

How silly! Turning on the light wouldn’t change a thing. My optic nerve still doesn’t connect my brain to my eye. Turning on the light doesn’t change my blindness.

But people seem to think it should change my mental health.

If one could just turn on God’s light, then their depression would disappear. If they would just pray, they wouldn’t have panic attacks.
But that is not the case. Of course there is power in prayer and it’s not wrong to pray for healing or help to cope. But prayer isn’t a machine that vomits the right answer if you pray the right prayer. It’s a way to draw closer to God and listen to what He wants to tell you.

So, maybe He won’t take away my anxiety or depression. Maybe He won’t miraculously transform my acrylic eyes into real ones. But somehow, this doesn’t come across very clear to some people in the church. Because these illnesses are of the mind, their legitimacy is often questioned. And because they can be questioned, it’s easy to point fingers and accuse those dealing with them of weak faith.

“If you could just pray more, you wouldn’t be depressed.”
“If you would just trust more, you wouldn’t have anxiety.”

But if you turn on the lights, a blind girl is still blind.
If you have faith, you can still struggle with mental health.

Even if we believe in God’s power to transform our hearts and perform miracles in our lives, it doesn’t equate to a life without hardship. I believe in Him and I’m still blind. I believe in Him and I still struggle with anxiety. Our faith in Jesus shouldn’t change because of our circumstances. But what I pray does change is the view that our circumstances should.
Though to be quite honest, I don’t care if people’s circumstances change or not. As long as their hearts do.

DISABLED PEOPLE AREN’T MADE OF SUGAR — WE WON’T MELT IN YOUR PRAISE

Raise your hand if you’ve ever been told, “You’re not made of sugar, you won’t melt” and sent out into the pouring rain.
I have… looking at you, Mama! But you know what? Cover your ears Mom… but she was right. We won’t melt. I have never once melted from excessive moisture or soaked-sock syndrome.

The same goes for people with disabilities and the praise we often receive for just… living.

I’m sorry to burst your bubble, able-bodied reader of mine, but compliments regarding a disabled person’s ability to carry out simple daily living tasks are not flattering; they’re belittling.

In my eighteen years of blindness, I’ve been praised for almost everything. Some of the more notable examples are being praised for my ability to walk up a set of stairs, knowing the names of the streets in my neighbourhood and being capable of using a microwave without assistance, and all of these as a twenty-something woman. So yes, I am referring to praise for the simple acts of living a normal life—cooking, taking transit, getting dressed, putting on make up, using the Internet, etc. Think of something normal that able-bodied people wouldn’t think twice about and I can bet you that we’ve been praised for it.

Let me make this clear:
These are not compliments.

This is empty praise. It’s meant to bolster our confidence and flatter, to encourage and give us a pat on the back. We’re supposed to be honoured, to feel grateful and flattered that you noticed our achievements. So often, I hear that the able-bodied person is just being nice and that they have the best intentions with these comments, which may be true; I’m not the judge of someone else’s motive.

But when one of these “compliments” comes my way, I feel a lot of things… and flattered is at the bottom of the list.
You need to know the truth.

I feel small.

I feel patronized.

I fear that everything I do will always be viewed through the lens of my disability and what able-bodied society deems to be praise-worthy and what isn’t.

And a question always arises that I’ve never found an answer for: Do people truly believe that my life is so bad that I need the simplest things to be celebrated to make it worthwhile?

But let’s take a step back for a minute and get comfy. It’s story time!

THE ONE WHO WAS AMAZED

I met Mac in the summer of 2020 when I plucked up my extrovert courage and walked into yet another young adults group at a local church. My friend and I had been searching for a community like this for a few months and I was getting utterly exhausted. The emotional strain of putting myself out there, enduring not only the standard small talk of a new social circle but the inevitable questions about my blindness and my guide dog that I knew would come was wearing me out.

The first meeting went very well without incident, and the second was encouraging. I got the questions about how much vision I had and how long I’d had my pup, but those were to be expected. I was starting to hope that I was becoming more part of the group and less of the blind girl.
Until the third week when Mac walked up to introduce himself. And it wasn’t long until it started… and wouldn’t stop.

Mac: So, you can use a microwave?
Rhi: Oh for sure! I put tactile dots on the buttons so I can tell what’s what, and from there, it’s easy. I do the same thing for my oven and my other kitchen appliances.
Mac: So, wait. You can cook?
Rhi: Totally, I love cooking. You just have to make some adaptations and then blind people can totally do it, just like everyone else.
Mac: Wow… just, wow. That’s so amazing!

No matter how I tried to redirect our conversation to something other than my disability, Mac steered us right back. My best friend, who witnessed the exchange, described his expression to me later as “a faraway, dazed expression of pure awe and amazement.” Needless to say, when we got home that night, I needed to vent a little steam.

I was the blind girl again.
Maybe that’s all I was.

I was more than my blindness, wasn’t I? That’s what my family said. That’s what my therapist said. That’s what God said… right? I was a daughter, a friend, writer, and lover of espresso milkshakes. That counted for something, didn’t it?

But when none of the rest of who I was mattered to Mac, I couldn’t help but question what I’d been taught about myself.

What Mac didn’t know was that just a few hours earlier that afternoon, I had sat on my couch, writing out a list of posts for my new blog. “I’m going to do it,” I told my guide dog, Cricket. “I don’t care if they only know me as the blind girl. I’m going to start a blog and do what I love.” The peace that I felt was indescribable—it was like coming home.

I would write, no matter what.

But when I met Mac, my resolve was completely undone. If I was only ever going to be seen as the blind girl, then why write when everything I say would be filtered through my blindness? Would anything I say concerning anything outside of my disability even be heard?

My peace was stolen from me. And I watched it go.

Trade in Your Praise for Puddles

What I should have done is tell Mac what I’m about to tell you:

Stop! And just listen.

My blindness has shaped me in more ways than I even realize today. It’s a big part of my story and a part that I will never deny or diminish. Jennifer Rothschild said: “My blindness doesn’t define me. It refines me.” [My apologies, I couldn’t find the source of this quote as I don’t have access to all her books in accessible formats. Remind me to rant about that later].
My blindness doesn’t define me, but it refines me. I just love that. Don’t you?

But when I, as a disabled person, receive compliments for doing the things I need to do to live, it becomes the thing that defines me. My disability becomes the central force around which my existence revolves.

That’s not how I want to live.
But you’ll have to help me.

Stop paying me compliments for living in spite of my blindness. I do not cope with my blindness. I do not suffer from my blindness.

I am not my blindness.

Will you help me?

Will you help us?

I know that you mean well. But it isn’t enough. Stop and look. See us. See us for who we are and not what our bodies can and can’t do. Stop praising us for things that you wouldn’t compliment your fellow able-bodied comrade for, and look deeper. We’re human beings with stories of our own to share and voices to tell them.

So rather than expecting us to melt beneath the warmth of your praise, just take our hands and jump in the puddles with us instead.

Come on, I can’t be the only 24-year-old who still does that, right?

THE CASE OF THE DISABLED CHRISTIAN, PART TWO: “ALL TO THE GLORY OF GOD.”

NOTE: Read THE CASE OF THE DISABLED CHRISTIAN, PART ONE: SHOULD WE PRAY FOR HEALING?” here.

Do I Want to Be Healed?

THE CASE OF THE DISABLED CHRISTIAN, PART ONE: SHOULD WE PRAY FOR HEALING? In part one, I promised you an easy answer to this question, so here it is:

Do I want to be healed?

No.

I do not want to be healed. Nor do I believe that I need to be healed. For the quality of life crowd, let me assure you that while I have my struggles like everyone, I have a wonderful life, blindness and all. I live within walking distance of a gorgeous beach. I have a family that loves me unconditionally, a supportive and inclusive church community, friends that uplift and encourage me, and I have my independence. I see nothing missing from this beautiful picture.
While sitting at the beach last week with a friend, looking out at the waves, I said, “I couldn’t enjoy this any more if I were sighted.” And I meant it.

But what of my relationship with God? It hasn’t always been this way. When I first became blind, I prayed for healing. My family prayed for healing. And that wasn’t wrong. When I prayed for physical healing last, I was eighteen and sitting on the window ledge of my second-story college dorm room. I had a nudge in my heart and I listened. Maybe there’ll come a time that I’ll ask again in the future, but only if the Lord leads me to it. I choose to believe, and be content with where God has placed me in this world. And that brings me to my final thought, and the most important lesson I’ve learned.

It’s About God, Not Me

In my last post, I said that we don’t know how to hold both a loving God and a disability together.

This is how:

By realizing that having a disability changes our lives, but it doesn’t change God.

The question of whether I’m blind for the rest of my life or if God restores my sight is irrelevant to the bigger picture.
It’s about God, not me. He is still who He has always been and always will be—a God of love, grace, justice and the savior of my soul. I am here on this earth to serve and glorify God, not the other way around. By no means has this been easy, and I struggle with this truth every moment of my life; my sinful nature persuades me that I’m the center of the world and even God is subject to my wishes. I get upset when He doesn’t answer prayers the way that I think is best, and my faith wavers when I don’t feel His presence the way that I hear worship leaders and christian authors describe. But the truth doesn’t change.

God doesn’t change.

The question of healing has been one that I’ve had to grapple with for as long as I’ve been blind. People are always curious about my answer, and even more so when they hear that my answer is no. I’ve given my reasons to family, to friends and to total strangers. But it took many years, lots of tears and constant wrestling with God to come to the conclusion that I have.

If it is God’s will to heal me, then may I be healed. But it will have to come from Him, not me. My healing must be part of His plan to bring glory to Him in my life. But for now, as I write this looking out the window at the beautiful ocean, I believe strongly in my spirit that I am firmly in the center of God’s will. I can see the blessings and the growth and the beauty that my blindness has brought. And if God is using this to his glory, who am I to rob God of a way that He’s chosen to work in my life and the lives of those around me?

God is so much bigger than I can imagine, and my healing is in His hands. I Corinthians 10:31 says it well: “So, whether you eat or drink, or whatever you do, do all to the glory of God.”

“So Rhianna, can I pray for you to be healed?”

“Thanks for the thought. But no. There are other things going on right now that I’m struggling with, though. Could we pray for those? And if there’s anything that you need, I’d be happy to pray with you, too.”

THE CASE OF THE DISABLED CHRISTIAN, PART ONE: SHOULD WE PRAY FOR HEALING?

Let’s hit the ground running with this blog! And I’m excited to attack the most asked, and rather controversial question for most disabled people.

Do You Want to Be Healed?

While I have an easy answer to this question which I shout from the rooftops with more conviction than most people expect, I’m not going to answer it yet. I want to break down all the facets of this question first so we can understand fully what we’re asking. I think it’s much deeper than we realize. As you read, please be mindful that everything I say here is my own personal conviction and though I know many others who share my views, these are my words and not meant to represent every disabled person’s experience.

It’s Just Physical, Right?

When someone prays for my healing, they are asking for my physical disability to be restored to health. They’re asking that my blindness be taken away and that I be given sight. That seems fairly obvious, right?

Maybe. Maybe not.

In praying for any need, there is always something underlying, something which propels the prayer into action. When the Israelites asked Moses for water in the desert in Exodus 17, Moses petitioned the Lord and He provided water through the rock at Horeb. They were thirsty so they asked for water. Similarly, when the 19th-century preacher, Charles Finney prayed for rain, he prayed with expectation and with the knowledge that without it, the crops of Oberlin Ohio would die and they couldn’t care for their cattle. Their need for rain prompted a prayer, and God answered their prayer. Though prayer is first and foremost a way to be in conversation with God, to know Him, to listen, and to grow closer to Him, it’s perfectly okay to ask for what we need. Matthew 21:22 says “And whatever you ask for in prayer, you will receive, if you have faith.”

But I always wonder what drives people to pray for my healing. The most common answer I hear to this question is that they want me, the disabled person, to have a better quality of life. But stay with me here, because I want to break this down even further.

What constitutes a “good” quality of life? For some, I can imagine that it’s being financially stable. For others, having a family, or perhaps, it’s having the freedom to travel. Everyone is different—some love to be up and moving and others are perfectly content at home.

But you know what? I can do all those things, too. People who are blind can travel, raise families and be financially stable. There’s no one-size-fits-all standard for quality of life. So before presuming that a disabled person’s quality of life is somehow lessened by their disability, try something different… ask them. They may just be perfectly happy. I know I am.

There’s one more comment I’d like to make before I leave this quality-of-life discussion. In hearing this question, I can’t help but hear some underlying ableism — ableism being discrimination or prejudice against individuals with disabilities. Now, let me ask this:

What makes an able-bodied person feel that they know what’s best for a disabled person?

Please, take a minute and think that over. I don’t pretend to have an answer, and it will vary depending on who you ask. But I encourage you to spend time with that question, and if you can’t find a reason other than “I’m able-bodied and they have a disability,” then I implore you as nicely as I can: STOP!

Maybe people think our quality of life would be improved by healing since we wouldn’t be bound by hospital visits or adaptive equipment or prescription medications. We wouldn’t be limited and would be free to live as we wish. But, everyone, able-bodied or disabled, has limits. Hate to break it to you. Mine happen to be physical, and for some, they’re mental or emotional. Limits don’t inhibit freedom—they enhance it.

But Doesn’t God Want Them to Be Healed?

In the Bible, there are countless stories where Jesus heals people. The healing of the blind man in John 9, the bleeding woman in Mark 5:21-43, and even after Jesus ascended, his disciples, Peter and John healing the lame man in Acts 3. These accounts are incredible and miraculous, clearly the hand of God at work in people’s lives.

But in being told and retold these miraculous accounts of healing, I’ve grown up a little fearful of what this teaches us about people with disabilities. Our presence in the Bible is often as the recipient of the amazing grace that Jesus offers in being healed of our afflictions. If this is how we are teaching about disabled individuals in the world and particularly in church, it’s little wonder that healing is our go-to response when presented with someone like me.

“But Jesus healed the blind man,” they say. “He healed the lame, the mute, the demon-possessed. Jesus was all about healing.”

Yes! He was, and still is! You’ll never see me arguing with that. But is that the only type of healing that Jesus wants for us?

I believe Jesus came to heal us spiritually, to draw us into relationship with him. Paying for our sins by dying on the cross in our place wasn’t so that I might be physically healed, but so that I could come to him, even as a sinful person, and find healing for my soul. Does that mean that Jesus has lost interest in physical healing? Absolutely not! But I don’t believe it’s his priority, and when he chooses to heal, it’s for a purpose.

Here’s where I am going to take a gamble, and this isn’t meant to put words in anyone’s mouth. But in my heart, I do believe this is a very real part of the driving force, whether the asker knows it or not.

It creates a crisis of faith for the able-bodied believer. Jesus healed the sick and disabled. He can heal today, right now, if we pray. But when he doesn’t, or the disabled person doesn’t want to be healed… what do we do with that? How do we as believers reconcile an ever-loving God with a disability? Because, if he were truly loving and wanting the best for us, wouldn’t He heal us?

We don’t know how to hold both, our God of love who made us fearfully and wonderfully and with a purpose, and disability.

But there is a way.

Continue reading: THE CASE OF THE DISABLED CHRISTIAN, PART TWO: “ALL TO THE GLORY OF GOD.”

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.