joy

Meagan, wearing a colourful summer dress and tall black boots, smiles as she touches soft, fuzzy leaves. Purple petunias are visible in the background.

Meagan’s Guide to Stylish Farewells: On Coming to Terms With Vision Loss

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Sighted people are always caught off guard by how casually I treat my vision loss, whose inexorable progression began the day I came into the world. While I understand the assumption that vision loss is all sadness, all the time, that isn’t the case for me. If my vision was ever good enough to accomplish useful tasks like driving, or fun things like painting, I’d likely be far more bereft. As it is, what little vision I was born with is more liability than blessing, becoming increasingly burdensome as it dwindles.
The one thing I occasionally allow myself to mourn is the loss of colour perception. Though my understanding of colour was never perfect, my childhood is filled with memories of gazing with fascination at anything brightly coloured, especially in nature. Now that I’m all grown up, and my vision loss is more advanced, I don’t reliably notice colour unless I make a deliberate effort. Even then it’s hit or miss.
I’ve always known I’d eventually lose all my colour perception, but over the past few months, I’d begun to view that loss as part of my present, not my future. It was no longer on the horizon. It was upon me, happening in real-time, and I couldn’t deny that it seemed to be slipping away more quickly every day.
The way I saw it, I had two options: I could lament its vanishing and write more soppy posts about it, or I could give it a send-off worth remembering. I chose the second option.
I wanted to infuse this time in my vision loss journey with joy and gratitude, focusing on what I had rather than what I’ll lose. To that end, I enlisted the help of my charming and devastatingly attractive friend Krissi (did she pay me to say that? You decide.)
She fell in love with my vision (ha ha) and planned the most colourful day she could imagine: a plant crawl. All day long, we visited various greenhouses, including the Muttart Conservatory and Greenland Garden Centre, exploring plants from around the world. There was more colour than I had the capacity to process, and it truly was a feast for my eyes and soul.
Surrounded by vibrant flowers and exotic trees, I got all the colour-gazing I could ever want. I also discovered something else. Interacting with plants is a surprisingly tactile experience, if you have a brave and patient plant expert like Krissi nearby to keep you from impaling yourself on a cactus. I’d always thought of plants as delicate things that didn’t like to be touched, and there was the looming threat of insects that would make their displeasure painfully known. In these climate-controlled environments, I was able to gently acquaint myself with the glossiness of banana leaves and the shapely curvature of a fruit tree. I stroked roughly textured bark and soft foliage that rivalled felt. I found a leaf that looked exactly like a feather, with its slightly downy grain. I touched leaves so fuzzy they felt like peaches, and other leaves that felt like nothing so much as the rough but cozy blanket my grandfather might drape over the back of his rocking chair. I discovered creepy-feeling succulents and graceful, delicate herbs. Krissi nearly had to tear me away from a plant that appeared to have sprouted its very own umbrellas. There was so much to touch that I occasionally forgot I was primarily there to look.
The biggest surprise came when we stopped off at Krissi’s house so she could teach me the tricky art of flower arrangement—another chiefly tactile activity. I assumed it was all about doing whatever looks prettiest, but I soon realized that what felt symmetrical was the most reliable test for what would look fabulous in a vase. To my surprise, I learned that rookies use their eyes, while pros use their hands. Krissi patiently showed me how to trim stems, strip leaves, and thread flowers through my fingers in an awkward X shape.
Thread, twist. Thread, twist. Thread, twist. Snip snip snip…
Boom! I suddenly had a gorgeous bouquet, which made it look like I really knew what I was doing. (I still don’t, but photographic evidence of my triumph will forever suggest otherwise. Tell no one.)
As I cleared away the pile of stems I’d cut and sat back to admire an arrangement so bright I could actually see it, I experienced the air of celebration I’d hoped to inspire. I knew I’d soon see the world in shades of grey, and that not long after that I’d see nothing at all. But in that moment, I sat back and absorbed the incredible gift I’d been given, which was no less wonderful for its impermanence.
I’m sure that sadder times are ahead of me, with a blind community that is so often dismissive of partially sighted pain. I do not expect to remain this philosophical and high-minded about it all. I will have days where I’m grumpy about this slow march to darkness, even though I am already blind, for most intents and purposes.
But I’ll always have the comforting knowledge that I can live well and happily, colour or no colour, light or no light. And I’m lucky to have enjoyed both, if only for a while.

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Let’s Hear it for the Small Wins

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For me, the most exhausting part of living a disabled life is feeling the calling (or the burden) to educate those around me, and watching my attempts fail to take hold. I’ve been walking this planet for almost a quarter century now, and people I’ve known for most of that time still regularly send me undescribed images and grab me by the wrist when they should be offering an elbow. I make the same mistakes with my own friends and family, asking silly questions and continually messing up when I ought to know better. Time and time again, the universe keeps teaching me that regardless of how many marginalized groups you interact with, there’s no guarantee the lessons you learn will stick with you.

Then, there are the equally frustrating encounters with strangers—for instance, the man who, undeterred by my puffy parka and suit jacket, gripped my arm hard enough to inflict actual pain because he did not trust me to open a door on my own. Even after a swift and firm rebuke on my part—which never gets easier to do, by the way—he followed me around the elevator lobby, either unaware or uncaring that his assistance was not welcome. I can go through this routine a thousand times, and even when people are receptive and apologetic, the stress adds to the daily grind in ways that catch up to me, no matter how hard I try to be philosophical about it.

One down, many thousands to go. How uplifting!

Much is made of the big, sweeping changes, like inclusive hiring policies and game-changing legislation. Too little is made of quiet moments of reflection, advocacy, and individual triumph. It’s easy to get the community fired up about the stranger who grabbed you in the elevator lobby, but a lot harder to get them to rejoice with you when one more person finally “gets it.” Every day, one more taxi driver understands why service dogs should be allowed in his cab. One more teacher accepts that her fear of teaching disabled students is a doorway, not a dead end. One more parent respects a disabled child’s boundaries, as painful as it is to pull back and let go. These small but mighty turning points, the “I never thought of it that way” and “that makes sense now” and “I’m sorry” are happening everywhere, all the time. They don’t change the broken system that is so terribly skewed, but they matter, just the same. From what I’ve observed, so few people are talking about them.

Why not?

Seriously, why are we not doing more to congratulate each other for the ripples we are making? Why are we not doing more to tell others about those ripples in the first place? Maybe they’ll turn into waves, and maybe they won’t, but when’s the last time you stopped to truly appreciate the wins, tiny as they are? I know it’s been too long since I’ve stopped being sad about the times I couldn’t reach a person long enough to think about the times I managed to get through to them. Only now am I beginning to realize this is not the healthiest approach.

It’s discouraging to know that most people will repeat the mistakes we correct. Not everyone, not even most people, will remember your explanations and teachable moments. You have probably forgotten a lot of what you’ve been told over the years about how to treat people the way they’d like to be treated. I’m sure I have. We do our best, but we all slip up, no matter how informed and responsive we become. And, since no one owes us a thing and no one is obligated to educate us on the fly, we may make errors without even knowing it. I have not called out every single person in my life. Not even close. Who has the time?

Here’s the thing, though: we need to let the small wins define our lives as much as the losses. The stranger who asked if I needed help, and respected my wishes when I said no, should be just as significant to me as the person who couldn’t take no for an answer. If I’m willing to berate myself for failing to educate successfully in one instance, why am I not willing to be proud of myself when I do make a difference? Harm always seems more impactful than a neutral or positive experience, but I’m discovering that when we give the wins a little more space and sunlight, they have infinite power. Successful advocacy attempts from years ago are still able to give me solace and strength, just as unsuccessful attempts can still inspire feelings of anger and futility. Why, then, do I so often choose to dwell on anger, when I have so much else to celebrate? And why do I let other people decide whether my advocacy is meaningful?

I don’t have the energy for the level of advocacy I’d need to make the big wins happen—not usually, anyway. I have a busy life to live, and only so many spoons. I don’t have a string of Facebook-worthy successes with which to regale you, and the advocacy I do have time and energy to pursue would seem trivial to a lot of the people I know.

But last Christmas, I held my new nephew for the very first time, totally free of the anxious hovering and concerned muttering I’ve come to expect when I hold someone’s child. The narrative was less “awkward blind girl holding vulnerable baby,” and more “Auntie Meagan falling in love with her gorgeous nephew.”

Last week, my coworker asked if I needed help, then calmly walked away when I said I was doing fine, thanks.

Yesterday, I really did need help, and the person who gave it did not connect that moment of dependence with my competence as a professional. She has probably already forgotten she helped me at all.

Tomorrow, someone will ask me for help, and I’ll think no less of them.

With every day I keep trying to build bridges and promote crucial understanding, with every day I refuse to be permanently discouraged, someone trusts me a little more. Someone learns to better respect my boundaries. Someone promises they will never again grab my arm or lead me by my cane tip or badger me about not wanting a dog. More and more now, I am able to forget, for days at a time, that I was ever on the margins at all.

That’s not nothing.

That is, in fact, everything.

I’m always here for your small wins, just as I am for the times things go wrong. Get in touch, because as the ancient proverb goes, a shared joy is doubled, but a shared sorrow is halved.