FIGHTING THE FOG I CANNOT SEE

It’s a question that hangs over my head like fog whenever the first symptoms start to emerge.

Am I depressed again?

In this post, I talk about the what ifs that surround me when it comes to a potential cancer diagnosis. I monitor symptoms, research every possible cause, and panic at the inevitable truth—I have cancer.

But that hasn’t come true, and I’m thankful for that.

But what does seem to arise every few months is a bout of depression. I monitor symptoms, research methods of coping and regaining energy, and then succumb to the inevitable—I’m depressed.

Every person’s journey with mental health is unique. Each story deserves to be heard and each person needs to be loved. And as I tell you a bit of where I’m at with my mental health, I ask for that love and grace to be shown to me and everyone in the comments.

My first sign of a depressive episode is always isolating myself from friends and family. That study session at the coffee shop? Sorry, I’m busy. Want to go for a walk tonight? Can’t, I’m not feeling well. No matter the event, I find a way to stay home, buried in my blankets and senseless entertainment. Then comes the sadness that I can’t process—where did this come from? I wasn’t sad last week. The sadness turns to anger, and the anger tries to find an outlet. And finally, I put the pieces together: I’m depressed.

But now what?

I first recognized my depression while living on campus during university. It was there that I began going to therapy on a weekly basis and working through my struggles. I still see my therapist on a monthly basis, five years later. And while she’s given me many tools to manage my mental health, I have to resign myself to the reality that, to some extent, I will always have mental health challenges.

But over time, the way my struggles manifest has changed.

I still isolate. I still get sad and angry and hide within myself. But if this past week has shown me anything, it’s that as I change, my symptoms do, too.

Tonight, I was on the phone with my fiancé when I asked out of nowhere: “Is something wrong with me?”

Bless him for knowing what I meant, because that question is as vague as they come. I was referring to my headaches, my nausea, my inability to sleep through the night, and my preference for laying on the couch watching Netflix. I was talking about the lethargy, the realization that I don’t want to do those things that I find fulfilling, and how all I want to do is cry. My voice never got above a loud whisper as even talking took more energy than usual.

“I don’t know, honey,” he said. “Maybe you’re depressed.”

“I don’t want to be depressed,” I said, almost in tears.

I don’t. No one does. Being depressed is awful; if the symptoms we experience aren’t hard enough, add to it the societal stigma associated with mental illness which makes it difficult for many to reach out for help, and our depression is just compounded.

But it may be happening again. And as much as I may fight it, I may be in the early grips of a depressive episode.

I do have the tools to work through it. I have my therapist, my support network, and my antidepressant medication which helps to keep me stable. But nothing is foolproof, and even with all those measures in place, I still struggle.

And I’m scared. I’ve been here before and it’s a scary place to be.

But as I stare down the barrel of yet another depressive episode, I’m trying to remember three things:

  • It won’t last forever.
  • It’s okay to feel what I feel.
  • I have my God and my people to walk alongside me, no matter what comes.

FINDING MY WHY — WHY I’M A WRITER AND WHY I ALWAYS WILL BE

If you follow me on Twitter (and no, this isn’t a self-promo), then you may have seen this thread that I posted recently:

I just wrote what I intended to be a blog post, but wound up more like a journal entry. It could still be a blog post, but rather than focusing on publishing and posting and traffic and being productive, I think I’ll keep this piece for myself.

Maybe I’ve spent so much time and energy into what will sell, what will bring people to my blog and what content will gain me a place in the #WritingCommunity, that I’ve lost my “why” for the writing altogether. Maybe keeping some of it just for me, for my soul, is the cure.

After all, don’t I write for myself first and everyone else second? So what happens to my writing if I lose myself and I’m not writing with my voice or from my experience and truth?

Maybe I need to learn to write for myself again, and maybe that’s the way back to myself, back to why I started writing in the first place. And maybe then, I can move forward with my goals and ambition, once I realize that even if I don’t achieve them, I didn’t fail.

All right… existential writer crisis over, at least on Twitter. I’m going to reread the blog post that I’ll keep just for me, go eat something, and start to find my “why” again.

That existential writer crisis continued to plague me after I closed my laptop. The question of “why do I write?” had my mind relentlessly spinning. I thought the answer was simple, but was it really?

Turns out it was simpler than I thought, but the journey there was anything but.

I’ve been writing since I was a child. It started with stories about a trickster deer, giraffes on a rescue mission, and Emperor penguins who befriend Orca whales. A little older, and I turned my attention from animal stories to poetry. It was poetry about my first love, first heartbreak, finding out who I was and maybe more importantly, who I wasn’t. (and that’s why those poems will never see the light of day—can you say CRINGE?)

I kept writing. And I was in my mid-twenties when I decided to start blogging. I hadn’t given up on stories or poetry, but my priorities were shifting.

I needed to start using my voice, and I needed a new way to do it. I’d spent long enough wrestling with saying what I thought I was supposed to, particularly about my disabled body, and letting myself get pinned. It was my therapist who, over countless sessions, helped me realize that yes, I had a voice, and then asked me the ultimate question: what would I do with it?

Growing up, all throughout my childhood and adolescence, I was an unhappy disabled person. When I was eighteen, I met a friend who had walked a similar path of blindness and faith, and upon sharing it with me, made a way for me to walk my own with a little less bitterness and a lot more gratitude. But that was only the beginning of my journey to embracing myself, and in particular, my disabled self. But as life journeys often go, it got worse before it got better. That in itself is an entirely different story and today is not the day for it. But all that to say that it was a good five years before that path had lead me to a place where I recognized who I was, embraced it, and wanted to share it.

Enter Not Your Blind Writer. And just like the evening beside the hotel pool, sharing stories with a new lifelong friend at eighteen, this blog isn’t a destination, but a beginning. It’s been wonderful, freeing, empowering, and beyond terrifying.

I began the blog to share myself—my authentic self, and most importantly, my disabled self. Important, because my disability had been the one part of me that I kept the most hidden, yet, it impacted my life in the most obvious ways. To keep it hidden was a disservice to myself and my journey, and to everyone around me. So each time I published a post, the words that it contained were borne from the raw, authentic me.

However, as the weeks and months passed, more posts published and more people followed on social media, the path ahead of me has become a little more gray. Questions of publishing, social media, marketing and more, plagued me, and what I found was that those thoughts choked my creativity.

My writing became less and less of a craft that I loved and wanted to grow, but a climb up the ladder of success. I thought about everything other than putting pen to paper, or, keys to laptop? I created detailed writing calendars and post outlines. I wondered how many followers I could get and felt defeated when no one subscribed to my blog or followed me on social media. I started to see these other things, like Twitter followers, likes and comments as a statement on my value as a writer. But why?

Why was I doing all this?

And that question lead me to a deeper question: Why was I writing at all?

I was getting caught up in the glamour of the writing industry, but I’d forgotten what makes it in the first place—the written word itself. What did any of this matter if my pages were blank? What does thinking of royalties and book deals and book #6 if I haven’t started book #1 yet?

Why did I care about what others thought about my writing if I didn’t write?

I’d lost my why.

And I needed to find it. To do that, I needed to find the seven-year-old me that wrote about a deer that, in her quest for fame, performed shameful acts of trickery. The eight-year-old me who wrote about a giraffe that, in spite of being teased by the other animals, saved them from the pit of quicksand by using her neck as a lifeline. The high schooler crying after gym class over her first break up, even though they hadn’t officially dated.

That girl didn’t write for fame. She didn’t write to be published, or to earn a salary. She wasn’t concerned with formulating interesting tweets (which aren’t all that interesting, by the way) or how best to market her books for the most sales.

She wrote because she loved writing.

It filled her up. It made her smile. Her characters were her friends, and the words were her imagination come alive.

She wrote because she loved writing.

And that’s why I’m still a writer.

I live for the feeling of seeing words spill across the page, the way words can process and wrestle and grow me in ways nothing else can. I cherish the moments when I can fully express a part of myself and know that if nothing else, at least the page understands me. I smile for the moments when I sit in a coffee shop and suddenly, clap my hands like an excited kid and say, “Book idea! Book idea! Book idea!” a little too loudly (Cause… that didn’t happen… last week… at 25 years old).

I write to express myself and to let God do with that what He will. I can’t help but hope that if He’s given me a talent for the written word, then He has a plan for it. And as much as I’ve fretted about what that plan is, that’s not my job. I just need to write the words, and He can handle what happens after.

It’s good to think about publishing, to dream about seeing your name on a book in your favourite bookstore. It’s good to have drive and ambition and reach for the literary stars. But don’t let that steal the reason you started writing in the first place.

And you know what? Rediscovering my why makes me want to write more.

So please, friends: Whether you have dreams of making the bestseller list, writing a blog simply to share your daily life, or whether the only one who reads your writing is your diary, don’t lose your why.

Why do you do this? Why do you love it? Why will you keep going?

I love the written word, and I want to use the gift God has given me. That’s why I write.

Why do you write? Let me know in the comments.

GREEN PAINT — A SHORT STORY

He sold the house with the spare room to a woman who painted it yellow. Not the bright, cheerful yellow of sunflower petals, but the faded yellow edges of my father’s Bible which sat for forty years unopened on the mantel. I felt sorry for that Bible; its words misquoted and its pages worn only by age and not use. But I suppose the entire house was like that.

My grandfather had built it when the war ended. A small, cramped space, room enough only to hold his always pregnant wife and babies stacked against the wall in cardboard boxes. But it was all he could afford. The blood and tears soaked into the walls became a mark of distinction and he never tired of telling his guests that he built this grand place with his bare hands. That was the only thing Grandfather was ever prideful about.

But it was the only thing my father wasn’t. Grandfather stayed in the house until he dropped dead cleaning the breakfast dishes in 1998. And before I could sweep up the shattered pieces of the serving tray he’d been scrubbing, my father had sold the house to the first bidder.

And she is the one who painted the spare room yellow. And I am the only one who noticed.

I often wondered why my father was so eager to sell the family home after his father died. “Progress,” he said in his gravely voice as he beat his first on the kitchen table. “Can’t live in the past. The future’s coming and I ain’t going to be late.” So there went the house, the family photo albums and my grandmother’s book of handwritten poetry, the one bound in leather with the title embossed in cursive. All in the name of modernity.

But when my father died not six months after the house was sold, I discovered the truth in a hatbox. I have my mother to thank for that; it’s the one thing she got past my father when cleaning out the house, and she had the brains to keep it hidden until he was good and gone. I waited until he was interred and mourning had passed—something he hadn’t respected for his own father—before I opened it. And that’s where I found my grandfather’s journal, tear stained and tattered, which held the secret that he was an addict.

The sixties had left my grandfather in a delirium. His veins ran with alcohol and he had long since given up reading his Bible and had taken to beating his children over the head with it. Grandmother tried to calm his rages, to help him off the pills and liquor, but he wouldn’t have it. That’s how she lost baby number eleven. And my father, ten years old and two feet too short to stand up to him, just tried to keep out of his way.

It worked until my father’s eleventh birthday on April 27, 1971. Grandfather had come home drunk, his steps shuffling and swerving as he progressed down the hall toward the spare room where he slept. After the miscarriage, Grandmother had banned him to the back of the house, never to touch her nor share her bed. But she was too religious to divorce him. “For the children’s sake,” she said. But I think she was too scared of the backlash from the Baptists. I would be too.

“Good for nothing bar…” Grandfather muttered. He tried to twist the doorknob but it slipped from his grip and snapped back to its upright position. Trying again and failing, he cursed.

Shielded behind the slightly ajar bathroom door, my father held his toothbrush and stared down at the toothpaste dripping down his arm. He kept one eye on his father, still trying clumsily to open the spare room door, and noticing how quickly the paste dried and stuck to his arm hair. He pivoted, reaching for the towel to wipe it off but banged his shoulder into the side of the mirror. Down went the toothbrush with a clatter to the tile floor. It echoed in the silence of the broken down home.

Grandfather spun around and nearly toppled over. “Stop that racket, boy! Come help me with this blasted door.” My father froze, his eyes darting about the darkened hall like a flashlight beam, searching for an escape. But there was none.

“Now, boy.” Grandfather roared, gripping the doorknob. It twisted right, swung back and Grandfather went down. He was still, a tangle of limbs too confused to unravel themselves. “Help me up!”

My father, shaking in his socks and his mussed brown hair falling in his eyes, ran toward the one he tried every night to run from. I reckon it was the fear that pushed him into it. How Grandfather expected a boy to lift his limp, 250-pound frame I still don’t know, but he did.

My father got him sitting up and leaning against the wooden slats of the bed frame. He was halfway around, desperate for the door, when a hand shot out and clipped his left cheek. Tears streamed from his eyes, the salty wetness soothing the burning skin.

“Take it like a man,” Grandfather growled. “No son of mine cries like a girl. Come here, boy.”

My father didn’t move. But two broken ribs later, and my father had been hardened to any semblance of love. And my grandfather was still drunk. But not enough to forget.

Grandfather sobered up after Grandmother died in ’82. But he never forgave himself for not changing in time to ask for her forgiveness. But that didn’t hurt him as much as never receiving it from the only person who could truly help him heal.

They never spoke once my father left home at seventeen, though Grandfather tried time and again to mend things. The only reason I knew him at all was because of my mother. “Just because you won’t associate with him,” she told my father one night when I was eight, “doesn’t mean you can deprive our daughter of a loving grandfather.”

“Loving!” he scoffed. “Have you met the man?”

“Yes, I have,” Mother said, “but you haven’t.” They never discussed it again, but my father always paced angrily, muttering to himself or buried himself in paperwork at the office whenever we visited Grandfather’s house.

My mother was right. He didn’t care to meet the man Grandfather had become once he got sober and saved. That didn’t change what he had done when he was a kid. Nothing could change that. Not even God. No wonder why he never opened his Bible.

But I saw the man Grandfather really was. Even as a kid, looking through what everyone presumed was rose-coloured glasses but was really just an aid for my nearsightedness, I could see what my father wouldn’t admit was there. I remember sitting for hours on Grandfather’s lap, pretending to sleep so that he’d keep singing my favourite song. “I’ve got sixpence. Jolly, jolly sixpence,” he crooned. I know now that I never fooled him, not for a minute. He was gentle and wise, and had a faith as unbreakable as my father’s stubbornness. And so, he sold the house and scrubbed the memories from the walls of the spare room, in hopes that if he used enough detergent and distraction, they would disappear.

But even the yellow paint can’t hide it. It’s still there, buried beneath that hideous shade, and it will always be there unless you completely strip it and start over. But why put in the effort when you can sell the house and hand over the burden to the new owner?
So there it sits, the spare room in Grandfather’s house, with fading yellow paint and hurts that only stain the walls like blood.

But you know, my father wasn’t the only one needing to heal. And that’s why, after a trip to Vegas, I bought a Bible, that old house and a can of forest green paint.

GUEST POST — AN OPEN LETTER TO NEW DOG GUIDE USERS

I’m so excited to have my dear friend and fellow disability blogger, Anneliese, once more grace my blog with her wonderful, wordly presence. Anneliese is many things–many wonderful, wonderful things–but today, she brings her experience and wisdom as a two-time guide dog handler to the blog, and I’m so happy to share her perspective with you!

This post is part of a blog swap. Anneliese and I are each writing a post about advice we’d give to new guide dog handlers and publishing it on the other’s blog as a way to build community and share different perspectives. You can read my post on her blog and guess what… it’s another list!

Now, onto the post!


Dear future leash holders,

I hope you’re giddy. I could hardly keep my feet on the ground when I got the call. I hope you’re starry-eyed, that you see potential magic in every imagined future. Whether this has been a childhood dream come true, or a joyful consolation for a midlife complication, you’re at a very important threshold over which you won’t step alone. Your two feet will be joined by four paws, and so the journey begins.

It was 2009 when I began this journey, and that’s why I’m writing to you now. I’ve been around a few blocks with a couple of different dogs, and I’d like to share with you some wisdom I’ve tripped over along the way.

I thought about trying to organize this letter into something trendy like “Three Life Hacks for Guide Dog Users.” But I kept coming back to a single foundational principle: knowledge is power.

Scientia est Potentia

You’re going to receive several weeks of formal education. You’ll learn about laws and guidelines, and hear lessons presented as rules and stories meant to teach morals. They’re all very valuable, but they are just the beginning of your canine education. And, to be frank, not much of a beginning. There’s so much more to learn!

Food, grooming, discipline, fears, toys, social skills…you’ll learn about them all, and more. But it will merely be a vocabulary with which to frame more and more nuanced questions as your experiences and needs dictate. You must not stop learning. Not ever.

Your instructors will most likely tell you, quite honestly, that they can’t prepare you for every situation. But I doubt they’ll encourage you to do your own research beyond finding a local vet. They’ve been training dogs and users for a long time, so they think they’re pretty good at what they do.

They are, of course. But what they do isn’t what you do. They train dogs, and train users. You LIVE.

Living is different than teaching.

And so you must learn. You must learn, and keep learning. With every new dog you’ll live differently, and so you must continue to learn. Learn from other users, from blogs and books and podcasts. Learn from instructors and YouTube experts. Learn from your own instincts, and learn from your dog.

Knowledge is power. It’s the power to say “no,” the power to decide for yourself, the power to recover from mistakes and turn them into triumphs.

It takes power to say “no.”

No, others may not interfere with how you work your dog.

No, others may not take up your time and energy simply because you dared to bring a dog out in public.

No, that activity isn’t suitable for a dog guide, even if it is legal.

No, you don’t need to feel guilty for saying “no.” You know why these “no’s” are important, what the cost of ignoring them are, and how to execute them properly.

It takes power to decide.

In a world of hyper-availability we are inundated with advice and choices from every possible channel. Your school may provide you with a set of recommendations for how to find a vet, what food to give your dog, how often to groom, but doggy bodies are as varied as human bodies. Their minds and experiences, your environment and finances, and a hundred other variables all add up to this: what you need might change.

I’ve gone through half a dozen types of food, three vets, and a revolving door of treats and training techniques trying to meet my dogs’ needs. Between allergies, injuries, career and house changes, and the natural progression of a dog’s life, I’ve had to make an endless series of decisions I didn’t expect when my instructors gave me their formula for dog guide success.

I learned from each decision, but each decision required the will to deviate from that formula. I needed to know I was making the right decision. SO I learned, and then I chose. You can, and will, do the same. Your decisions will rest on the foundation of what you know, so build it strong.

Power of the Expert

Power is a hot topic these days. It seems people are obsessed with how much power they have in their personal lives, social lives, professional lives, in politics and finance. They’re even more obsessed with how much power they don’t have, and how much more power other people might have.

Whether your disability has been a life-long companion or a new acquisition, you’re likely very aware of the fact that people who can see seem to wield a great deal more social, economic, political, and personal power than you. This can be frustrating, limiting, and even dangerous at times. It’s probably one of the reasons you decided to ditch your cane in favor of a dog guide. I certainly preferred being “The girl with the German shepherd” to “the skinny white chick with the flimsy cane” walking around my college campus.

Social psychologists who study power have categorized it into several types: reverent (sometimes called referent), assigned, legitimate power, expert power, and so forth. What the instructors and trainers at your dog’s school have is expert power. Those with expert power have specialized knowledge about a particular subject that allows them to solve problems important to others.

But here’s the thing: those instructors got into their field of work because they are passionately dedicated to empowering you. They want to give you power. That’s why they train dogs, and give you lectures and coach you and offer support. And any rule or guideline they provide that seems constricting or less applicable to your particular situation is only given because you have less expertise than them.

The true realization of their dream, empowering blind people, would be for you to take the expertise they poured into you and multiply it so that the problematic guideline can be adapted to your unique lifestyle. Take the vocabulary they give you, enter it into Google and Amazon and Spotify and YouTube and other learning sources. And build your own expert power. These experts you learn from are giving you more than a well-trained dog and some basic education; they’re giving you the tools to learn more.

Recognizing this earlier in my dog-working career would have changed a lot about my dogs’ lifestyle, healthcare, and maybe even longevity. It would have saved me money, given me more networking and career advancement and educational opportunities. But I meekly submitted to the expert power around me, failing to realize its inspirational intent or potential.

I gained expert power out of desperation, but I won’t wait to be desperate again to follow any line of curiosity that comes my way.

Dear doggy-destined friend, remember you are at the beginning. Like a high school or college graduation, graduating with your dog guide is when real education begins.

May tails wag and treats flow freely in your future. May you stride with purpose and pleasure down busy streets and through crowded conferences. May you never walk alone again.

Love from Anneliese and Greta

GUEST POST — CHRISTIAN MOMS WANTED: BLIND NEED NOT APPLY

Having guest bloggers honour me by allowing me to post their brilliance on my blog is a dream I had as a novice blogger. And now, while I still feel entirely new at this blogging gig, I’m over the moon to welcome my first guest blogger.

I met Anneliese several months ago and found instant connection. Through our shared experiences of blindness, service dog use, and our faith in God, I’ve found a treasured friend and fellow writer. She is an artful communicator and her words have left me both awed, understood, and breathless, you know, that feeling when something punches you in the stomach because it’s so good! Yes, that’s Anneliese.

I invite you to read this post, follow her blog, Look On The Dark Side, and welcome her as she shares something intimate and rarely talked about in the disability community—the question of whether disabled women want to, or should, become mothers.

And after you’ve read her post–and ONLY after–check out the post I wrote for Anneliese’s blog where I tell the story of my first guide dog, Cricket’s retirement, From First Pet to Last Snuggle.


Greta, a chestnut-toned German shepherd, sprawls across Anneliese's lap. She and Greta grin as Anneliese appears to whisper something in Greta's fuzzy ear.

Before I get into today’s topic I’d like to thank my hostess for lending me her platform. We’re doing a blog swap, so if you really miss her you can find her work posted on my blog at Look On The Dark Side.

I have some pretty thick mental armor. I’m pretty hard to offend, I rarely respond when insulted or patronized because of my disability because I have better things to do with my time. And for a while I thought the first time I’d experienced discrimination was a store manager yelling at me because of my service dog back in college.

Another version of this biography is that I’m naïve and didn’t realize until halfway through college that people in almost every church I’d attended or visited had been discriminating against me since I hit puberty.

I’d like to share with you my story of subtle exclusion on the basis of disability, how it affected me, and how I deal with it.

I recently read Beth Allison Barr’s controversial new book The Making of Biblical Womanhood; How the Subjugation of Women Became Gospel Truth so I can now tell you that it was the transition from medieval maidenhood to Protestant family values that produced the phenomenon of every church lady you’ve ever known asking “so what about kids? How many do you want? Have you thought about how you’re going to balance work and kids/ What kind of schooling options have you thought about?”

These questions started for most of my friends in early middle school, presented as jokes, but began to show up in earnest as we began to talk about careers and college, nearing the end of our high school years. Aunts, grandmothers, Sunday school teachers and youth leaders all had their own personal versions of the interrogation. Several of my friends complained about it a lot, but I never really understood why.

“Just tell them you’re focused on your career, or you’re not planning to have kids, or whatever,” I told them. “They’ll listen. It’s the 21st century, and our church is pretty up-to-date. It’s not like we’re in the sticks somewhere.”

They didn’t seem to grasp how easy it was to defuse the pestering, I thought.

In college I spent a lot of Sundays visiting different friends’ churches. I went with whoever would give me a ride, whoever was going “regularly” that semester, trying to find a church home. I visited SBC, UMC, PCA, PCUSA, non-denominational, Episcopalian, and a handful of others, even something called Reformed Baptist.

It was at that last church where my roommate drew my attention to something. She was angry at a woman who had spent a few minutes talking to us after the service. The woman had been talking to my roommate because they knew each other. I just hung onto the edge of the conversation, not really listening. But my roommate was angry on my behalf.

“Can you believe her?” she asked. “Does that happen to you a lot?”

“Does what happen?” I asked blankly.

“People just assuming you won’t have kids because you’re blind.”

What?

I didn’t remember any mention of my blindness coming up in my roommate’s conversation. Just like people find they can hear their names or interests in a conversation they’re not listening to, I know when people are talking about my disability even if I’m mostly ignoring them. What was she talking about?

“The way she kept asking me about boyfriends and marriage and kids and stuff, and she completely ignored you,” my roommate explained. “She wasn’t acting like you weren’t there, she said hi to you and all the niceties, invited both of us to the small group on Wednesday, and then shut you out of the kids conversation. It’s bad enough we get harassed about it the minute we start wearing bras, but it’s even worse that they just assume you won’t have them just because you’re blind!”

I’ll be honest, my first thought was “you mean people were patronizing me instead of admiring and respecting my forthright and confident attitude about my future career?” I felt like a failure because people had treated me differently, whereas previously I thought I’d won them over to my way of thinking by simply being clear about my goals in life.

But she was right; I couldn’t think of a single time anyone had asked me, except my mom. When I told Mom I had other plans for my future she said she hoped I’d change her mind, but that it was perfectly fine if I didn’t and she’d be super proud of me regardless. Thanks for that, Mom. I wish everyone had been as understanding and supportive as you. I thought they had been.

My then-future mother-in-law asked me, too. She had the same response as my mother. God bless those women!

But both those conversations stand out as the only times people asked me about having kids – well, except other women I know with disabilities. They ask, because to them it’s normal, not shocking that a disabled woman would have kids.

I’m married with no kids. My husband and I don’t plan to have them. SO why is this such a big deal? Shouldn’t I just be grateful that nobody’s judging me a feminine failure for choosing not to grand my husband an heir?

Yes, but no, not really.

I’m happy not to have to deal with it because I have plenty of other obstacles to deal with, like trying to order off menu boards, use photos I can’t see in my blog, read labels on canned food, or see arrival boards at airports. Having a disability is a lot of work.

But disrespect makes that work harder, and whether or not they meant to – I choose to believe they didn’t mean to – these women in my past who assumed I couldn’t, shouldn’t, or wouldn’t have kids because I’m blind sent out the message “you’re incapable of succeeding at biblical womanhood as we understand it.”

With the child-free movement gaining support and more egalitarian concepts of Godly womanhood seeping into the Church from all directions a man or a mother might argue that it’s not as bad as it used to be for childless women in the church. They’d be wrong. Even those who spout less Victorian beliefs about Christian femininity still instinctively behave in ways that signal a woman’s value to society is her skill at parenting.

Without this badge of honor women my age at churches avoid me. Older women attempt to mentor me as a daughter in ways they don’t other young women because if I’m not a parent I must still be a child.

To some degree this is amusing. I have a master’s, I’m a licensed counselor, a home-owner, a martial artist, and more. It feels a little like a kindly old sheepdog trying to warn the top mouser that there are rodents in the barn. But if I had a shortage of confidence in my relationship with God, it could be devastating.

I could write a book on why this concept, that disabled women are not equal in Christ because they can’t have children, is wrong and harmful, where it came from, and how to stop it. Maybe someday I will. But for now I leave you with this thought.

It is sinful – and pointless and harmful – to place limits on how we think God can use any given person.

HAPPY BIRTHDAY SAINT, FROM EVERYONE WHO HAS EVER LOVED YOU

My husband and I were greeted in the early morning light today as we’re greeted every morning: As soon as my guide dog, Saint, realized that we were not asleep [notice that I don’t say awake, just not asleep], up he hopped onto the bed, wiggling so hard that he almost fell off. This morning however, was different. The wiggles, the kisses and the pure joy and excitement at [for me, a NOT morning person] just another 6 AM was as it always is.

Except …

It is Saint’s third birthday! *Wags, wiggles, and woohoos all around*

We showered him with pets and kisses and cuddles [not unlike every morning] but we bounced out of bed faster than normal to give him his birthday present, which we’d hidden in his toy box ever since he picked it out himself at the pet store a few days ago.

And the incessant squeaking of the new, stuffy whale, was a welcome and joy-filled sound that echoed throughout the house … all day …

And all throughout the day, I’ve been reflecting on the gift that Saint is to me. But as with all blessings so big, I don’t believe I’ll be able to fully appreciate it as much as I ought; the gift that he is in my life is simply too great. But I will always try.

But more than a simple “Saint is wonderful” post, I want to acknowledge and thank the people that made it possible for me to celebrate these milestones with my happy boy.


I received a touching email this evening from one of Saint’s puppy raisers, wishing him a happy third birthday, and it filled me with such a thankfulness, but also an unexpected bittersweetness that it’s hard to put into words. On the one hand, I’m incredibly grateful for these two women who, during their university years, dedicated months to raising a yellow lab puppy with boundless energy in the hopes that he’d one day be someone’s four-legged tool for independence, safety, and freedom. And I’m beyond thankful that that someone is me.

But on the other hand, I can’t imagine the mix of emotions puppy raisers must experience with each pup that enters their homes for a year, and then returns for training and eventually, to a forever home that is not the one who got them to that point. What kind of emotions swirl about in their hearts as they write an email to their baby boy’s new mom, knowing that it’s where he belongs and what he was meant for, all the while feeling the sadness of not having him close as they once did?

Guide dogs wouldn’t be possible without puppy raisers. My Saint wouldn’t be possible, wouldn’t be the wiggling, energetic, hard-working, blessing that he is, without his puppy raisers. He wouldn’t even be in my life without them, and so many more people that I can’t begin to list them here.

So, even though Saint jumps up on my bed, guides me to all the local coffee shops, keeps me safe in the world and gives me the unconditional love that only a dog can, he is not just mine. He is forever in the hearts of his puppy raisers. He is always in the memories of his trainers, the volunteers, and all those who have loved him, taken care of him, and prepared him for his life as a guide dog. He will always be a part of the Guide Dogs for the Blind family.

I may be his handler and forever mom, but I am the last in a long line to love him. And he wouldn’t be here without all those who came before me. So while Saint is the best boy ever [and I could write that post if you need], this is one moment that I want to say thank you to everyone who brought him here to me.

And there is no way I can say thank you enough.

If you’d like to donate or volunteer with GDB and make a difference in the lives of people with sight loss, as well as life-changing dogs like Saint, please check out GDB’s website to find out more.

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.”

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.”

HOW AN ACCESSIBLE WORLD FEELS AND WHY I’LL NEVER STOP ADVOCATING FOR ONE

In this post, I discussed why accessibility is an absolute necessity for people living with disabilities.

Today, as National Accessibility Week draws to a close, I want to highlight the personal impact accessibility has had on my life. In reading this, I hope you will take away a sense of what a lack of accessibility feels like, and resolve to join hands with your disabled friends and family to help change it.

In January of 2019, I attended class at Leader Dogs for the Blind in Rochester Hills, Michigan, to receive my first guide dog, Cricket. Classes at LDB are three and a half weeks of intensive, on-campus training. And as I was a first-time handler, never having even owned or cared for a pet dog let alone the completely new territory of one being my guide, I knew these weeks would be crucial.

Our days were spent rising at 6:30 for park time (the term LDB uses for relieving the dogs), feeding and watering our guides, and ending with the last park at 8:00. In between, were sessions both indoors and outdoors, practicing a variety of techniques on different routes in Rochester Hills and on school property. I learned how to direct Cricket safely across a busy intersection, how to navigate stores and malls, what commands Cricket was taught and how to correct him when he disobeyed. I had been sent guidework training material ahead of time which helped me prepare me for the experience, but nothing compared to the thrill and the stress of walking, hand on harness, with my guide dog independently.

It was a fast-paced time, and I got to know my three teammates Very. Well. More than once, they offered me tight hugs because I burst into frustrated tears in the middle of the mall, wondering if I would ever get the hang of guidework.

Training was exhausting, exhilarating, frustrating and empowering. I needed all the energy I could muster to make it through the experience and retain the information I learned. And I remember how it struck me upon arrival and continually throughout my stay at the school, how I was able to concentrate solely on my relationship with Cricket because of one thing.

Accessibility.

It should follow logically that, in being a school that trains both guide dogs and the handlers who receive them to be independent, Leader Dogs would be fully accessible to those with visual impairments. Yet, I still found myself awed by just how much independence they offered me.
And I realized just how much weight I’d been carrying on my own.

The example I most love to describe to my friends and family at home is the coffee machine. It sat on a table near the entrance to the RA’s office at the intersection of the Rochester and Avon hallways. And it was a popular spot. The coffee, I mean!

Beside each button was a brailled label with the name of the corresponding drink. I’m not a coffee person per se, but I made regular use of the cappuccino button! The rows of buttons and drink options seemed endless, and I wondered how long it would take me to memorize the order. But I didn’t have to.
Nor did I have to memorize where the cups, lids, sugar packets, creamers or tea bags were. Each basket that held these items were also labelled in braille and stayed in their place to the left of the coffee machine, easy to find whenever the craving struck.

I’m a coffee person, but my body doesn’t appreciate it as much. But while I was there, I visited the coffee station frequently, not only because I loved indulging in a drink that I didn’t buy often at home, but simply because I could.
I could grab a coffee whenever I wanted. Other than in my own kitchen, I’ve never experienced that anywhere. If I’m out, a sighted person is often assisting me with selecting a drink from a menu that isn’t accessible, or making it for me since I don’t know where they keep their mugs and coffee pot. Relying on others has become a norm for certain things in my life, something that I’ve resigned myself to accept.
But until I tasted this freedom, I hadn’t realized just how inaccessible, and unwilling to change, the world around me truly was. But here, I was valued, I was treated equal and meeting my needs wasn’t a nice thing to do–it was the right thing to do.

Accessibility was all over Leader Dogs for the Blind and it vibrated throughout the building and the program just how highly they prioritized it.
At the intersection between the Rochester and Avon hallways, tactile markers were set out on the floor so that I could distinguish by the texture when I was approaching the triangle. Along the hallways were handrails, and at varying intervals, my fingers would find a knob protruding from the underside of the rail. That knob was an indicator to lift my hand straight up to just above the rail where I’d find a sign with the name of the room directly across the hall from where I stood, in braille. And next to each door, there again was a sign with the room name to ensure that it was clear where you were.

In our rooms, a brailled schedule was fastened to the backside of the door, with the daily times for parking, feeding, watering and mealtimes listed for clients to check what was coming up next. Each room, and many of the common areas, were equipped with an Amazon Alexa, which made checking weather conditions, setting alarms for wake up, parking and feeding times as easy as ever. The dining room was set with several tables, with about eight or ten chairs around each for the teams and their instructors to enjoy meals together. to the back of each chair was adhered a braille number so that we could easily identify our assigned seat. I was #7.

It was completely accessible. And the freedom of it almost brought me to tears.

For a few weeks, I didn’t have to compensate for my lack of vision. I didn’t have to make justifications for the lack of accessibility all around me; “It’s too complicated, too expensive, too time-consuming, to make X-Y-Z accessible. It’s okay.” [For the record, it is not okay!] I didn’t have to ask for help nearly as often as I did at home or out in my community where things were constantly changing and making it difficult to be independent.

I was given a break. I could just be me, and I could rest. I didn’t have to work so hard just to exist. The world was finally catering to my needs rather than the other way around.

Three and a half weeks later, when I returned to Canada from training with my new, handsome, Cricket guiding me, I mourned the loss of that independence. I felt as though a part of me had been stripped and left at Leader Dogs for the Blind. I was back to the “real world,” the one in which I had to compensate for my blindness and never expect the world to meet me halfway. I was exhausted before I got off the plane.

Friends, this is why accessibility is so important. It isn’t a luxury. It isn’t disabled people being entitled or selfish or asking too much.

It’s realizing that disabled people are equal and valuable, and although our needs are unique, meeting them isn’t optional. It’s necessary to better the world and make it more inclusive for all of its people.

I GOT MARRIED! HERE ARE SIX UNEXPECTED AND WONDERFUL THINGS THAT HAPPENED AT OUR WEDDING

I’m BAAACK!

And I’m MARRIED!

It already feels like so long ago, but in actuality, is still only days ago. Anyone else feel this way after their wedding? But in all the planning that went into our special day, it’s nice to sit down and reflect, and I wanted to share some of those reflections with you.

Weddings are a time to celebrate a couple’s love and commitment and the people that got them there, but it can also be a day of (mostly) organized chaos. But with the right people and the right outlook, it can still be beautiful and wonderful and everything you dreamed it would be.

Mine certainly was. Here are six things that happened that made it uniquely ours and totally wonderful.

I. We Changed Locations The Day Before

Third time’s the charm, right? My husband and I were engaged for six months and we had laid claim to our dream venue within the first week. But, sparing you all the back-and-forths, we had to give it up due to our provincial Covid-19 restrictions. So, we changed to an outdoor location, choosing to say our I dos on the lakefront. We knew a mid-April wedding might be cold, or raining, even snowing, but we had no choice.

Except we did.

During the rehearsal at the lake, my fiancé and I were shivering like two baby chihuahuas; it was shaded, windy, and the next day wouldn’t be much better. My Aunt, who officiated the ceremony, pulled us aside and gave us the permission that we weren’t able to give ourselves: we could move locations, and it was OKAY.

But where would we go? Well, both my fiancé and I, my Aunt, and my dad, had all thought to ourselves the previous evening that the AirBnb my parents had rented for my mother’s side of the family would be perfect. It had a large basement where my fiancé could get ready, the upstairs where I could get ready with my parents and my Aunties, and a deck where we could be married in the sunshine (and out of the wind).

So 24 hours before the wedding, we changed our venue … for the third time … And it was perfect. It was so much better than we’d dreamed; yes, it was easier in the practical sense, but emotionally, it gave my fiancé and I that ahhhh… just right feeling that we’d been hoping to have on our wedding day since we got engaged. And it made all the difference for us.

II. My Dress, Uh, Had A Malfunction

As I nervously texted a friend of mine in the days leading up to the wedding, she said that something will not go as planned but that all I needed to do was enjoy it [and that my family/wedding party would handle the rest]. I found that comforting, because yes, something did not go as planned, but her words helped me not to see it as a failure but simply part of the memories.

I was giving my parents hugs before taking my soon-to-be-husband’s arm to walk to the front. I leaned forward to wrap my arms around my mom, and POP! We burst out laughing. The clasp at the back of my dress had busted. The zipper was still intact, but as I discovered later, it isn’t that the clasp just unhooked, but vanished completely. But that wasn’t the last of it. As we made our rounds for goodbye hugs before heading off for our honeymoon, I leaned down to hug my grandma, and POOF! My left strap ripped loose from its front holding. Good thing I had my shawl on!

I laugh about it now, and you know what, I was laughing then, too. Some brides’ worst fear might be a wardrobe malfunction, but to me, it wasn’t worth the stress. I was with my family and friends. I was getting married. And in the last moment with my parents before heading up to stand with my husband, I was a nervous wreck, but the moment of laughter released all the stress. It wasn’t about timing the music for my walk down the aisle anymore. It wasn’t a performance. It was life, and a moment in life shared with people I love. And you know what? Sometimes, life is funny.

III. The Person I’m So Thankful I Invited, But Almost Didn’t

I won’t divulge the details here, but sufficed to say that there is a member of my family that I’ve had a rocky relationship with for several years now. When things first fell apart, I decided that I would not invite them to my wedding—I wanted to enjoy my day and not be focused on the hurt that I felt.

But as soon as my fiancé and I started writing the guest list, I had to make a choice, once and for all. My daddy, who’s always been good at walking me through difficult decisions, said something that stuck with me and made all the difference. He said: “If you don’t invite them to your wedding, it will make building a relationship with them later much harder.”

He was right.

So I sent them an invitation.

And when the wedding day came, I was so overcome with gratitude and love and such joy that they were there. Our hug was our first hug in years, and contrary to all my fears, their presence didn’t detract from my marriage celebration—it enhanced it.

IV. I Giggled All Through The Ceremony

During the reception, I was told many a time by my friends and family that they’d never seen a bride giggle so much. At first, I wasn’t sure what to make of this remark, but when I asked one friend, they reassured me that it was a good thing.

The joy was bubbling out of me and everyone watching could feel that joy.

I worried that my giggles would be construed as nervousness, and sure, there were some wedding jitters that day, but my giggles were of pure happiness and joy. I giggled when my dress clasp broke. I giggled when we all started crying because my sister-in-law had dubbed it a “sob fest” even at the rehearsal. I giggled while crying through my vows.

All because I was so filled with joy at marrying the love of my life, and believing firmly in what God had started in the two of us.

I’ve always been a smiley, giggly girl, and I didn’t want my giggles to come across as childish or young. But whether they did or not, I’ve decided not to stress about. My giggles were just me, and an outpouring of love and joy. There’s nothing to worry about with that!

V. We Opened Gifts With Our Family

A wedding signifies only the beginning of a life together. My husband and I would have our honeymoon and years after that to be together, but we wouldn’t always have family—particularly our family from far away. They came for one weekend to celebrate with us, so the least we could do is give them our time in return.

After our friends had left and only family remained, we gathered in the living room of the AirBNB to open gifts and cards that our guests had brought. While it may not seem like much, it meant so much to both my husband and I, and I’m hopeful, for those that were with us then, too. It was a way to relax, to unwind, and to say thank you for taking the time to come to our wedding. There was no reason to rush away as fast as possible—the honeymoon would still be there, but our family wouldn’t be. And as our families mean so much to us and have played such significant roles in our lives leading up to this day [and will continue to in the future], we wanted to spend time with them.

We didn’t want the wedding day to focus only on my husband and I. We weren’t the only ones there who mattered. And spending time with them after the festivity had calmed and we could relax, joke, take pictures and just chill, is such a wonderful memory from that day that I know I’ll take forward with me and cherish when I look back.

VI. The Focus Was On The Marriage, Not The Wedding

And, in everything that happened that day, I am so blessed that my wedding day wasn’t simply a production or a timeline of events.

My wedding day represented the covenant that my husband and I made before God. It wasn’t the final destination or an ending, but a beginning. Throughout the celebration, I was so thankful that the focus of the day was kept on what was to come and the lifelong marriage that had just been committed. It wasn’t about dresses or charcuterie boards or photos. It was about much more than that, and when the details of the wedding day have been lost to memory, the meaning of the marriage will last.


Just because my wedding is over and my husband and I are settling into married life and figuring out what our normal will be, doesn’t mean that I’m out of wedding mode.

So please, tell me about your wedding in the comments! I want to hear something that made your wedding uniquely you!

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.

I WAS BULLIED FOR BEING BLIND –A MINI MEMOIR

I’m somewhere between four and six years old–no longer sighted but not quite blind–when I’m bullied for the first time. And though the details are lost to memory, the belittlement and fear has never left my body. And I know it never will.

This is that story, the moment when I first learned that I would not always be safe, protected or valued because I was disabled.


“Who am I?”

“Who am I?”

“Who am I?”

Their voices tumble over each other, the cascade of the same mocking, accusing question thundering like a waterfall in my ears. I close my eyes and try to drown it out, but I can’t.

“Who am I?”

“Who am I?”

I don’t remember how I got here. The grassy slope that inclines up to the soccer field was where I’d been rolling down gleefully–maybe not today, but I know I have before–but now, it’s my prison. I’m on my back, my feet above my head at the top of the slope, and like a sheep amongst wolves, I am in the middle of them.

Trapped.

No way to escape.

Their hands pin me to the field, their taunts unrelenting. I can’t see whose holding me down, my vision is already too blurry to make them out. They’re older kids, anyway. I’m too small to struggle, and I’d never win. But there has to be at least five or six.

“Who am I?” comes the mocking refrain. Over and over, they spit the question and laugh. Let the little blind girl figure it out.

But I don’t.

So I stay put.

I don’t know how I get free. But at some point, I’m released from their grip, able to stand and brush the grass and dirt from my shirt, and go inside. It doesn’t happen again, but it doesn’t have to–I’ll never forget.

I’M GOING ON HIATUS … AND GETTING MARRIED!

As much as I want to be like the energetic, go-getter writers (and people) that I see on Twitter and in my community who seem to be able to do it all and never need a break, I’m just not. I take afternoon naps most days and have since I was a teenager. Writing one blog post mentally drains me and I can’t write again for a few days while I recharge. I go to bed early and sleep late, not because I’m lazy, but because my body really does need that much rest.

And as much as I want to have blog posts prepped and scheduled twice a week for the next month, the words haven’t materialized and I don’t have the energy, or the mental capacity, to push them out now.

That’s why I’m going on a short-term hiatus.

April will see me married to the love of my life, and moved into a new apartment in a new city. It will see me make final arrangements for the wedding, spend quality time with friends and family that are travelling for the celebration, and organizing and settling into a new routine. Sheesh, even the thought is exhausting!

But I’ve never been more excited, nor felt such a deep joy.

But in the same way that my body needs more rest than many others my age to function at its best, my mind also needs rest. And while writing this blog does invigorate my mind and is intensely satisfying, it takes a great deal of mental energy, and as I tire rather easily, I have to ration my energy appropriately.

And during my marriage celebration, I want to be fully present—physically, mentally, emotionally and spiritually. I want to be in every moment, in every conversation, and give the gift of my time and attention to everyone who is blessing me with theirs. I spent years dreaming about this wedding, and now that it’s here, I want to celebrate as best as I’m able.

But as my closest friends know, you can’t get rid of me that easily. I will still be on Twitter, available through the contact form here, and in the comments. I will still be taking requests for freelance writing projects, so please reach out to discuss your ideas with me through any of the above methods.

But until May, there will not be any new posts on the blog. But fear not! Simply because the blog will be on hiatus, does not mean that my mind is not spinning with new content for when I return. Already, I have multiple posts outlined that I cannot wait to finish and post for you all to read.

But for now, I will be taking a break so that I can fully embrace the new and wonderful changes in my life and cherish the people that I love.

Be well, be kind to yourselves and others, and keep reading! I will see you soon!

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.

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.

INACCESSIBILITY — AN UNFILTERED RANT

I am here for a quick moment, not with a pre-planned, edited post, all nice and filtered to give me a better chance at being listened to. I am not here to offer any deep thoughts or new ideas or suggestions to be a better ally.

I am here to ask one question, and one question alone.

IS IT TOO MUCH TO ASK TO MAKE YOUR WEBSITE ACCESSIBLE IN 2022?

I HAVE planned to do a full, detailed post on one particular organization’s 1: lack of accessibility, and 2: inability to use disabled characters as anything other than inspiration symbols or pity figures, but this is not that post. It DOES however, deal with this organization, and their updated app/website experience.

It’s set to launch on July 18, 2022, but as an exclusive member, I’ve been granted early access. And while I’ve watched all other members loving and raving about the new update, I’ve been up late, almost in tears with my husband over the simple fact that I can’t access it. Their website probably looks great… visually. But it is utter h*ll for blind users, navigating it with a screenreader. Its features are probably so helpful and more detailed to give a better insight into the content… but I wouldn’t know.

I can’t access it.

And after the many months they’ve spent promoting the upcoming, updated experience, I’ve been wondering, “will it be accessible?”

I think I have my answer. I’m remaining slightly hopeful that the official launch will bring about some remnant of accessibility, but since I’ve had access [no pun intended] to the early preview, I highly doubt it.

It infuriates me. It makes me sad. It makes me want to scream, and cry, and wonder how, in 2022, they can produce content that uses disabled people for their inspiration and pity tropes, and not even consider accessibility so that their real-life, flesh-and-blood disabled fans can access that very content.

Are we not worth it?

Okay, I think that was two questions. And I will end with a third, one that I don’t have an answer to at the moment, but maybe someone will share their perspective with me. Here goes:

At what point does someone stop supporting a beloved cause to stand up for their belief and passion in equality and accessibility?

LESSONS I LEARNED FROM MY LEFT HAND

If you were to ask me if I’m right or left-handed, I’ll tell you that I’m both. Not that I’m ambidextrous and have the equal use of both hands, but simply because both of my hands equally share the work.

  • I deal cards with my left hand,
  • and I open doors with my right.
  • I hold Saint’s harness handle with my left hand,
  • but I use my white cane in my right.
  • I read Braille with my left hand,
  • yet I write print with my right hand.

But that being said, I’ve always had a special affection for my left hand. It has many jobs, very important jobs; it holds Saint’s harness handle, it reads books, it bears half my ability to write, it wears my engagement ring, and it explores the world around me.

But as with anything that we hold near and dear, it’s far too easy to take it for granted. So please allow me a moment to issue a public apology to my left hand.

To my left hand:

I’m sorry that I’ve taken you for granted. You do so much for me, and I don’t know if I’ve ever thanked you properly. I’ll do better, I promise.

You can only do better once you know better. That doesn’t make it easy to do, but it does mean that it’s doable. Two weeks ago, I was confronted with this lesson, and even now, as things are returning to normal, I’m working to keep this lesson front and center.

Let me tell you the story:

Two weeks ago, life was running along smoothly—eating, sleeping, pooping, biting hangnails—all was well. But when I awoke the next morning with the fourth finger on my left hand puffy and swollen and virtually useless, all was not well.

I went to work, attempting to sub in my pinkie finger for my ring finger’s responsibilities, but it was slow-going. And by the end of the second day, it was getting worse, and I was worried. I’d had thousands of hangnails, but none had lasted this long nor been this painful.

I felt a little silly walking into the emergency room because of a hangnail during a global pandemic, particularly with the girl behind me in tears. But I didn’t want to take any chances; if left untreated, it can become a serious condition.

So there I sat, with my swollen finger in the ER waiting room. And then in a chair with the numbing cream on my finger. And then in another chair when the doctor stabbed a scalpel into the abscess. And then I sat some more, trying to hold back tears, waiting for the infection to drain. [Apologies to my visually-oriented readers].

And for the next three days, my finger was wrapped up in what I called “finger pantyhose.” I was sent home with antibiotics, a bottle of saline, extra bandages, and two more pairs of pantyhose. My finger was incapable of performing its fingerly duties. I couldn’t type. I had to talk my fiancé through washing my hair in the sink because I couldn’t wet my hand in the shower. Anytime I went to use my left hand as normal, I was sharply reminded that I couldn’t.

It amazed me that something as small as a hangnail could cause a disruption of this magnitude. One little nail, one little nibble, and my finger was out of commission for days. And as I’ve watched my finger heal and return to a semblance of normal, I’ve had a pit of guilt sitting heavy at the bottom of my stomach.

It’s easy to take things like physical and mental health for granted; if you don’t know what it’s like to lose an ability, you can’t fully appreciate how it feels to have it in the first place.

Being sighted until I was six, I know what I’m missing out on as a blind woman. Sunsets, the sea, snow-capped mountains, the faces of my loved ones, and as content as I am with my life, I know there are beautiful things I cannot experience with the same fullness.

And I wonder if people with sight ever think about this, when they’re driving to work, glance out the window and catch a glimpse of the sun glistening off the mountain peak. Do they even notice it when they see it day in and day out?

But aren’t I doing the same thing?

Aren’t I, even after temporarily losing the use of my left ring finger, already returning to “normal” and forgetting how it felt to be without it? Am I forgetting how lost I felt, unable to write and use my left hand as I’d always done without a second thought?

I don’t expect anyone to feel the same way about their left hand as I do about mine. Even other blind and visually impaired people may not hold this deep of affection for this appendage. But there’s the rub: it’s more than a hand to me.

It’s my freedom.

My left hand is a symbol of my independence and freedom. In a world that is speedily losing its freedoms, even in countries which pride themselves on promoting it, my left hand has been my flag. It reads braille and allows me to learn, grow and explore; it holds the harness handle of a dog who helps me feel safe and independent; it wears the ring given to me by my beloved because he saw me for me—disability and all—and said “I love her.”

It’s a reminder, every time I reach for a door, open my Bible or go for a walk with Saint to be thankful. Because even something seemingly small can have a big impact, and I don’t want to live my life taking the small stuff for granted.

Because what my left hand has done for me isn’t small. It’s everything. It’s who I am, who I’m actively becoming, and a part of who God created me to be. And I don’t want to take a gift that God has given me for granted.

Tell me, what experiences have you had that have taught you this lesson? Let me know in the comments.

LET OUR YES BE YES, AND OUR NO BE NO

I was asked to give a speech to a friend’s Rotary club on accessibility this week. Having been given free reign within that wide-as-the-world topic, I decided to speak about something that is near and dear to my heart as a disabled woman.

In preparing the speech, I grappled with the question of whether my words were too harsh or too blunt; after all, I want to be heard and understood. But the thought that yes, the truth can be sometimes be hard to hear, kept popping up in the background. I decided to speak my conscience and so, I wrote this speech.

The truth may be hard to hear. It often is. But just as I asked of my Rotarian audience to hear me out about my experiences, I ask it of you: Read with an open mind and a willingness to believe in the validity of my experiences, and of others living with disabilities.

I say these words with love and respect, and I pray that you can receive them in that same love.


Good morning. Before I start, I just want to say thank you for asking me to speak to you this morning. I’m glad to be here.

I’ve titled my talk this morning “Let Our Yes Be Yes, and Our No Be No.” I’ve taken the title from a Bible verse from the book of Matthew, where, regarding whether one should swear oaths, Jesus says, “Let what you say be simply “Yes or “No.”The reason I’m borrowing this phrase is because, although I’m not talking about swearing oaths, it does fit perfectly into one aspect of my life as a disabled woman. But before I get into it, I want to say that, as I go through this speech, the last thing I want is to come off like an ungrateful person or an accusing one. I will be talking directly to people with sight, and I don’t want anyone to feel accused or blamed in any way. But I also believe in being real and honest because that’s the only way for change to happen. So I hope that you can hear me out as I talk about my experiences as a blind woman in a very, sight-centric world. So with that disclaimer, the first thing I want to say is this:

I know you want to help us. When you come across people with disabilities, it’s ingrained in our society for the able-bodied person to offer help to those who need it, and an easy assumption to make is that someone with a disability needs help. Because yes, we have certain limitations and sometimes, we do need it. But that desire to help, which may very well come from a good and true place, can also be incredibly damaging. Too often, the scenario unfolds in a way that forces the disabled person to accept help that they don’t need, and often, this is after the disabled person has said no.

It’s a scenario that I, and others in the blind and visually impaired community, come across all too frequently. We are going about our normal, daily lives when a well-meaning, able-bodied individual shows up in our path, insisting on helping us. Often times, this is with tasks like crossing the street, finding a door, going up or down stairs, or simply… walking. I remember a particular experience that demonstrates this. I was at university, and I was walking down the mostly empty hallway on my way to my favourite study spot in the next hallway over. I was using my white cane. Two girls were walking behind me and they called out, “Do you need help?” I didn’t think they were talking to me and kept walking. But they caught up to me, put a hand on my shoulder, and said again, very concerned, “Do you need help?”
“No, I’m fine,” I said and moved to continue walking.
“No,” they said, stopping me. “We need to help you. Where are you going?”
“I don’t need your help,” I said again, but again, they insisted. Now at this point, I do have to confess that I simply didn’t respond and walked away. When I got to my spot, I did not study; I called a friend and vented about what had just happened.

For anyone who isn’t blind, it’s hard to understand why this interaction is so infuriating. So I want to walk you through what I felt after that encounter so you might begin to grasp the weight of it.

First, there’s a wave of anger. I’m not helpless! Why do feel the need to help me when I don’t need it? Do they really see me as less capable because of my one disability? I am fully independent; I’m going to university, living alone… surely I can walk down a hallway.
Next is the feeling of inferiority that always accompanies the anger. Why is it always the superhero able-bodied person helping the poor, disabled one? My disability doesn’t render me incapable, but somehow, it feels like sighted people will never understand that. No matter how many times I explain it, they don’t listen.
And of course, there’s sadness. My therapist tells me that anger is a secondary emotion, and that underneath anger, there’s always sadness. And who wouldn’t be sad? These types of encounters just prove time and time again that I live in a world that doesn’t view people like me as equal. And as long as society sees us as objects in need of help or fixing, we will never be equal.

If you’re uncomfortable hearing me say all this, I don’t blame you. But stay with me, this isn’t the entire speech.
It’s uncomfortable for me to say, and to experience. And I don’t pretend to speak from your perspective, but I suspect that one reason the divide between able-bodied people and disabled people is so so great, is because in order to make any change, we have to deal with major discomfort and swallow our pride. And as we all know, no one likes to do that.

But what’s the alternative?

Those feelings I described are universal among the blind community, and I have countless friends that could corroborate this. I’ve had too many phone calls with friends where one or both of us are in angry tears over the unfairness of it all.

And while there’s no one-size-fits-all solution to this systemic ableism, there is one thing able-bodied people can do that would make a world of difference.

You can trust us.

When I tell you that I don’t need help, I’m not being rude. I’m not rejecting your good intentions, nor being prideful or stubborn. So many times, the people offering me help are deeply offended that I won’t take it. It’s as if my being independent is a personal attack, and this comes out in their tone of voice and their insistence on helping after I’ve declined. But it isn’t simply that I don’t want your help—I don’t need your help. As a blind person, I am fully capable of knowing my routes and directions around the city, work and school environments, cooking independently, taking care of pets and service animals, and virtually, anything a sighted person can do. I always joke that the only thing I can’t do is drive… legally, that is. Trust me, I’ve driven cars before, just not on the road.

I used a word earlier that not everyone is familiar with. Ableism. Ableism is simply “discrimination or prejudice against individuals with disabilities.” And our society has ableism woven into its very existence. Think about it for a minute:

  • Why do able-bodied people feel that they have an obligation to help disabled people, simply because they are a little different?
  • Why is the unemployment rate for disabled people triple that of non-disabled people?
  • Why are disabled Canadians twice as likely to be assaulted?
  • Why is the provincial disability assistance program only providing enough to make ends meet, and sometimes, not even that?
  • Why are disabled Canadians forced to choose between marrying their partners or keeping their disability payments?—because goodness knows, we don’t deserve both.
    • That is ableism.
      And I believe that one core aspect of this ableism is a distrust of disabled people. In encounters like I described earlier, a pervading theme that I notice is that able-bodied people don’t trust people with disabilities to make good decisions or know what’s best for themselves. I’ve had people question my ability to go for walks around my neighbourhood because I must not know the names of the streets so how do I know where I am? I’ve had people absolutely astounded that I can use a microwave independently. I’ve had people ask how I put on my clothes in the morning, and even though I know they’re referring to how I match the colours, I admit that I’ve let slip a snarky, “I put one arm into the sleeve, and then the other.” And during university, when I was in receipt of assistive technology, I kid you not, this is the dialogue me, and my fellow disabled classmates, endured with the organization providing the technology:

      Organization: So, what assistive technology can we get for you that would be most beneficial for you?
      Me: I think A would be really helpful, for x-y-z reasons. How does that sound?
      Organization: Well actually, that’s not what we provide. You’re going to receive this device instead.
      Me: But, that actually doesn’t help me in my studies. Why can’t you provide me with the one I asked for?
      Organization: We don’t offer that. We only provide this one for all of our clients.
      Me: Then why ask?

      If able-bodied people working in the realm of assistive technology believe that they are superior in making decisions regarding the disabled people they work to serve, they should not be working in this field at all. We are looking for allies, not dictators. The lack of trust is so blatant here and honestly, it’s disgusting.

      But it’s all too common, and for me personally, I’ve resigned myself to this life. Recently, a friend got heated on my behalf about my government-issued ID not being in braille. I was shocked, and I think I said something like, “Well, why would it be?” The idea of actually living in a world that views me as equal is so far-fetched that I’ve almost stopped reaching for it altogether. But what would happen if the trust was restored to our society? I almost don’t even dare to dream about that, because I’m scared to come back to reality. But, I’ll try.

      • Maybe we wouldn’t have such a high unemployment rate because we’d be trusted in the workplace to fulfill the role and do so as well and efficiently as an able-bodied person. Maybe our accommodations would not be a hindrance, but an asset.
      • Maybe we would be more confident moving about in our world, knowing that not every decision we make will be questioned.
      • Maybe building relationships wouldn’t be so scary, because we wouldn’t have to wonder, how will they react to my blindness?
      • Maybe my life would be just a little brighter, because for once, I’d feel equal, appreciated, valued and trusted by the society that I live in.

      If you think that sounds like the world you want to live in, then I have good news for you. Rather than grabbing my arm without consent and shoving me across an intersection I already know how to cross safely, this is how you can help: Change your mindset about people with disabilities. Trust that we know what’s best for our unique situations, and that with some adaptations, we can live full and happy lives. Please help make that easier for us.

      Now, I don’t want you to leave this morning thinking that every disabled person will refuse your help, or that we’re all angry about it, or that you should never offer help again. Truly, it’s the manner in which the help is offered that makes the biggest difference. Is it condescending and forceful? Or genuinely curious and respectful? I don’t want anyone to feel at fault; this is not one person’s problem, but that ableism that is so tied to our society that we don’t even see it. But once you do see it, you can’t unsee it.

      As I am a person who is very organized and loves making lists, I can’t end this speech without incorporating one. If you want to help us in a way that will be the most beneficial, here are a few things to consider:

      • When asking if we need help, be willing to hear our answer. If it’s yes, then go ahead. If it’s no, respect that, and move along.
      • Please never touch a disabled person without consent, even with good intentions.
      • Speak directly to a blind person; never talk about them or ask questions to people around them. We can answer for ourselves.
      • Please do not speak to, touch, or make eye contact with a guide dog. All of these are incredibly distracting and when a guide dog is distracted, my safety is in jeopardy.
      • If you see a blind person struggling to find an object, don’t jump to offering help. It might take us a bit longer, but 9 times out of 10, we figure it out just fine.
      • Please do not refer to blindness or disability as something that needs to be “fixed” or “cured.” We are not broken things in need of repair, and language like this makes us feel like it.

      There are many more things I could say about this. After all, this is my life day in and day out. But I hope that gives you a glimpse and maybe a springboard to make a change. The bottom line is that people are people, whether we have a physical, mental, emotional or invisible disability, and that is not the measure by which we need to be treated. The basics of life—trust, respect, compassion—you wouldn’t believe how far they can go and how much the world is in desperate need of more people that practice them.

      That is the best way to help a disabled person.

      Thank you.

LOOK UP! — FINDING GOD WHEN I FEEL BLIND

Starlight Serenade

Sing, oh ye stars above!
Sing upon this earth with love.
Sing thy song with beauty inlaid
Sing your starlight serenade.

Sing to those who lie awake
Sing for the brokenhearted’s sake.
Sing a lullaby for those afraid
Sing your starlight serenade.

Sing to shine thy Father’s light
Sing to give His strength and might.
You’re fearfully and wonderfully made
So sing your starlight serenade.

© Rhianna McGregor

It was a seventeen-year-old Rhianna that wrote Starlight Serenade, sitting in the window of the spare bedroom at midnight. The cul-de-sac was silent except for the lone cricket singing his own serenade into the night. A neighbour’s fountain was trickling and if I settled my thoughts and stilled my heart, I could almost believe that I could hear the ocean. But what I heard above all this was the night itself speaking to me.

It was my escape and my safe place. In high school, when my life was shaken up like a snow globe and didn’t know how to settle, I turned to the night as a means to cope. The spare bedroom beside mine, which once belonged to my brother before he left for college, offered me a window ledge wherein I would sit, wrapped in a blanket with the window open all the way and only a screen separating me from the outside world. The breeze was gentle, constant, and I always wondered what the wind had seen; had it come from the sea, or had it visited someone else who was up late, crying over a broken heart? No matter what I was going through, the night was always there.

Most nights found me in the window, praying, crying, writing poetry, or a mix of all three. It was here that, all at once, I felt whole and distinctly broken, lost but safe at home, abandoned yet I was wanted.

It was where I met God.

But there was a catch. As with all things beautiful, they are never without heartache.

Here, my heart ached because in the silent beauty of night, I was acutely aware that I couldn’t see it. Here, I was blind and there was no escaping the truth. I couldn’t lift my eyes to the sky and get lost in the sea of stars, too numerous to count. I couldn’t make friends with the man in the moon, nor wish upon a shooting star like I had as a child.

I was blind. And my body knew it. This article discusses phantom eye syndrome, a condition classified by the presence of phantom vision, phantom pain or phantom sensations that individuals who have had one or both eyes enucleated can experience. In the years since my eyes were removed, I have often felt like I fit into the category of phantom sensations. But whether I am clinically accepted as experiencing phantom eye syndrome or not, I do not know, but what I do know is how it feels to want to see and not be able to.

I describe this sense of “feeling blind” to my friends and family as reaching for something but you come up short every time. Your fingers graze the edge, you strain and stretch to grasp the thing you so desperately want, but you can’t. It’s just a little too far, and no matter what you do, you won’t be able to reach it.
This is how my eyes feel. They want to see, and it’s almost as if they believe that in trying hard enough, they will. But they can’t. No matter how much they strain to encompass the visual world, they can’t.

But don’t think that I move through every moment of my life feeling this yearning to see that will never be satisfied. There are a handful of circumstances that I’m aware trigger these phantom feelings. And when they arise, I get myself into wide, open spaces. These phantom feelings aren’t dissimilar to claustrophobia in that I feel trapped in small spaces, so fields, beaches, even empty streets can help to alleviate the anxiety.

Here is a brief list of those circumstances:

  • The night sky
  • The sea
  • Looking through photo albums

Feeling blind doesn’t stop me from going stargazing or reminiscing over old photos. But I do keep mindful of its weight which at times, can be very heavy.
It reminds me that I am different
It reminds me that I am missing out on an entire sense and world of experiences that many people take for granted.
It reminds me that the visual memories I rely on to build new ones are quickly fading with time, and I’m working with limited resources that cannot be replenished.

But it reminds me too, that it won’t always be like this. CS Lewis said that “if I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world.”

Being outdoors in the middle of the night is when I always feel closest to God. And I often wonder if that something that I’m reaching for but cannot grasp yet is God himself. I am a fallible human, incapable of grasping the truth of who God is and what His plans are for my life. I cannot grasp the ways of God or understand His thoughts in the midst of my humanity. Isaiah 55:8-9 says that “for my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. / For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

And when I look up into an endless sea of stars, I am reminded that the world is so much bigger than I am. And so is my God.


Is feeling blind frustrating? Absolutely, it can be. I believe that it is a physiological response to the trauma my little body endured at five years old. But can it point me to the one who is bigger than my blindness, more powerful than my problems, and in control of whatever happens in my life?

Yes. And that’s what I try to remember when the blindness overwhelms me and I cannot reach what I’m so desperately searching for. I take a breath, tell myself that it’s okay to feel it, and channel the overwhelm into my heart’s yearning for eternity with God. There, I will see Him and that’s the truth that keeps me going for my time here on Earth.

MY WRITING ESSENTIALS LIST

“People often say that motivation doesn’t last. Well, neither does bathing, that’s why we recommend it daily.” — Zig Ziglar

Like taking a bath, brushing our teeth and drinking water, adopting regular habits that promote a healthy lifestyle not only improves our health–physical, mental, emotional and spiritual–but can also help us maximize our productivity.

With that said, here is another list, and another happy Rhianna. [Okay, I’m always happy when I blog, but you know my thing for lists!] These are my six writing essentials, my must-haves that kick up my motivation, get my writing fingers in gear and make writing a little easier and a lot more caffeinated.

I. BrailleSense U2

My first foray into the world of braille notetakers for the blind was in the fourth grade when I received my first PacMate from Freedom Scientific. With a refreshable, 20-cell braille display, it became home to my earliest writings—stories about my crushes and my journal of the houseboating trip my family took two summers later. In middle school, I upgraded to the BrailleNote Apex from Humanware,similar in that it used a refreshable braille display and was a fully functional unit, but with more advanced features.

And since grade 11, I have used the BrailleSense U2 by Hims Inc., which I have lovingly nicknamed George.

Braille is not merely a method of reading and writing for me; it’s freedom, independence and a love I can’t quite articulate. Reading words with my fingertips shows me a world I can’t touch through audio; it’s tactile, real, and the words come alive for me in a way they can’t do any other way. Whether reading someone else’s words or writing my own, it needs to be in braille. I focus better, I edit better, and I believe that I write better when the words trying to escape my brain have a physical outlet beneath my fingers.

But these devices are far from affordable. Often in the thousands, I find it tragically ironic that assistive technology is often too expensive for the very people its created to serve. That’s why I’ve held onto George for as long as I can, but his time is coming to an end. The BrailleSense U2 is no longer supported by the manufacturer, many of the functions I rely on stopped working a long time ago and mine has developed an eerie rattle. But I can’t buy a new one like I could a new notebook [something I’ve always longed to be able to write in].

This is why I have a GoFundMe campaign to raise financial support to purchase a new computer. You can read about my funraiser for a QBraille XL here and I’d appreciate any support so I don’t ever have to write without my beloved braille computer, George. Because yes, every braille computer has been and always will be called George!

II. My Couch/Bed

I’ve been told time and time again that my two favourite places to write are bad for my back—and it is, awful, in fact. But I can’t escape it. The familiarity, comfort and safety they bring allow my brain to relax and let my imagination and words flow.

My bed and my couch are my two havens of comfort and coziness. I find that I am most productive here, wrapped up in a blanket and surrounded by pillows. It’s the perfect recipe for a happy Rhianna.

I can write in coffee shops, on airplanes and wherever else I happen to be, but by far, these two spots are for me, my words, and of course, my dog [because he has to be comfy too, right?]

III. Music

Not a unique item for a list of writing essentials, but as I am rarely without music as it is, it is even moreso when I’m writing. Whether it’s blasting on my Amazon Echo Dot or in my headphones, there is always music around me.

I have written with almost everything from country tunes to acapella hymns on repeat in the background. One of the key words there is repeat; I do have to listen to songs on repeat or else my mind derails and I get distracted in the story, the rhyme, the instrumentation or whatever else my brain desires to use as an excuse for not writing. With songs on repeat, I don’t have to guess at what’s coming up, and if the song inspired my writing, it’ll continue to do so as long as I play it over and over and over again. Apologies to anyone in advance who ever wants to write with me!

IV. Coffee/Water

Before the last few weeks, this item would have only listed coffee. But I’ve been re-inspired to drink more water, so now coffee has to share the spotlight.

I recently bought this half-gallon water bottle with time markings and I carry it with me everywhere. I make it a habit to drink one bottleful before bedtime, and though I can’t see the time markings, which say things like “almost there” when the line reaches 7 PM, I find it motivating to push me on. Water helps keep me healthy and energized, and besides, I get the bonus of having a water bottle in my favourite colour—green [the pink was a somewhat unfortunate side effect].

But that can’t detract from my love of coffee. Hazelnut creamer is a staple in the fridge, and I know the way to the shops that serve hazelnut lattes like I know my own house. Yes, I love the taste, but coffee is also a comfort drink that brings me back to memories of people I love. And yes, I’m drinking a hazelnut latte as I write this. Would you expect anything else?

V. My Blog

In college, I heard a story about the lecturer’s two daughters; when they were small and on a family hike, the mother tried to motivate them to reach the top, but knew that each daughter was motivated by something different. For one, it was chocolate, and for the other, it was a few dollars. I don’t remember the point beyond the commentary that a person is either externally or internally motivated, but it stuck with me.

Like the two daughters, I am externally motivated. Money and chocolate both work, but another force I’ve found to be incredibly adept at motivating me is my blog.

Seeing my words, alive on the page and being read by others is magnetic, a strong, unrelenting pull that encourages me on when I get discouraged. Hitting “Publish” on a post gives me an adrenaline rush that I can’t quite describe, like the moment my feet lifted off the ground in my Hawaiian vacation paragliding expedition. That feeling alone is worth writing for.

VI. My Why

When I was a kid, I wrote because it was fun. I could make animals talk and do things that I couldn’t do. Later, I wrote because I was told that I had a talent for it, a skill that if I honed, could take me places. And in the awkward years between teenager and emerging adult, I wrote because of the question that niggled at the back of my mind, the one that whispered, “what if you can’t do anything else?” That’s not to say that I didn’t love writing, that I wasn’t head over heels for the craft or the way words on a page could say what I couldn’t out loud.

But it wasn’t until after I started blogging that I began to write for myself. I finally found my why, the “thing” that I wrote for, the pull, the draw, the passion that moved me to get up each and every day and write, even if no one would read it [or even if they might one day]. It’s what I lived for, what I longed to bring to life and what satisfied me in a way not much else has ever done.

I found my why, and without it, there’s no reason to write. That is an essential I never go into a project without, because it’s the only thing that makes the words live and breathe and make them worth writing.

What are your writing essentials? Are you externally or internally motivated to pursue your dreams? What keeps you going? Tell me in the comments.