ghost images

a year in disability

September

I always think of September as the beginning - the beginning of the school year, the beginning of buckling down to the real work after summer, the beginning of autumn.

It is also the beginning of what became vision loss, a disease, an endless string of appointments and bills. It was in a September that my mother frowned as I read one of Laura Ingalls Wilder’s novels (Farmer Boy, I think - I can still see the mint border on the cover) and told me I was holding the book too close to my face.

I got my first pair of glasses not long after. I was not quite 7, almost the same age to the day my mother was when she got her first pair too. No one is concerned.

October

The days are getting shorter, and I start to shrink my wanderings. I reorganize my schedule to start allowing for my fall and winter habits: do things by daylight. Avoid driving after dark, but if I must, don’t go anywhere unfamiliar.

I shift my evening walks earlier. I don’t like to walk in the dark, but it’s not for reasons most people think.

I can’t see anything at night.

November

I ask for help to find something at the store. The associate is helpful, guiding me to the right place. We have a pleasant, light conversation, and I thank them, making a joke about how I couldn’t see it at all when I was staring right at it earlier. A fellow customer overhears and jokes, “Time for an eye doctor visit, ha?”

The smile slides from my face. I know this stranger is being friendly, that they do not know, there is no malice here. But in their quip I hear echoes of ways it’s been said to me in the past, moments of cruelty. And I hear the casual, ableist ways we talk about vision generally - the things I’ve gritted my teeth against, things I’ve corrected (vision is a spectrum, why can we not understand this). This stranger is not the target of my baggage, so I slap a smile back on and nod. This is a small town, these are its ways, to have conversations in the aisles, in the parking lot, at the park, in the café.

I let it go. Not the time to address such things.

December

My mother frowns at me as I enter the living room in my parents’ house. “Those are very large,” she says, pointing to my glasses.

I frown back. “It was impossible to get smaller styles when I bought these, and I’m not getting new ones for another few years.”

“I suppose,” she says. My parents haven’t come with me to an eye appointment in ten years, mostly because it got boring to listen to me not get a single letter right, my mother claims, and not because I’m an adult. I picked out these glasses by myself - the one blessing contacts have given me: I can try on glasses and actually see what they’re going to look like!

Normally I would be tucking into bed, maybe reading another chapter of my book, glasses mark the end of the day for me. But it is Christmas and I’m interested in something else.

One of the side effects of my disease is pronounced halos around lights. It’s like a smear. It never goes away, and it’s worse at night. I can ignore it with my contacts in. With my glasses, it causes me to move a bit slower, be more cautious. Without any aid at all, lights are the most demonstrative of how my vision is distorted and damaged. But this is the time of year I embrace it. I wait till the rest of my family goes to bed, I shut off all of the lights but the Christmas tree, and I lie on the floor to look up at the smeared, blurry rainbows of light on the tree. I could look at it for hours. I will lay here for a while, thinking happy cozy thoughts, thinking of other years where a smaller, younger Alison did the same thing (albeit on carpet instead of wood flooring now).

I am happy in this rainbow moment.

January

I’ve started saying that I’m disabled, out loud, to other people, as the occasion suits. It took a long time to get here; internalized ableism is real. But I have actual vision loss, even if I look “normal.” Even if in a picture of my family, I’m the only one not wearing glasses, which is a funny trick: I’m the one with by far the worst sight. I checked the box for identifying as disabled for the first time some months ago when it feels right, I’ve started asking for accommodations when registering for webinars, I used the high contrast/vision accessibility settings at a virtual conference I went to. And yes, it did make everything easer. I feel foolish for holding myself back, for denying myself the things I needed in order to be more convenient for other people.

I drift into this topic while talking to a friend, she immediately says, “but you’re not disabled.”

“Yes, I am,” I tell her. “This affects my quality of life in ways I know about and ways I can’t separate from myself anymore.”

“But you manage so well!” she looks at me, searchingly. She can’t believe I would say this about myself. We go back and forth, me trying to explain my experience of the world, her telling me that I do so well. I know she’s not being malicious, but a current of annoyance rises in me. My disease is invisible, the things I do to “manage so well” are invisible and I’m trying to give it a name.

Finally, I shake my head. “There’s nothing wrong with being disabled.”

February

I immediately spot the thing which negates any benefit of the new PowerPoint for the orientation program: there’s an entire section with yellow font. Yellow font! There are so many vision-unfriendly colour combinations out there, but yellow font on a white background is a new level of bad. I wait for the director to ask for our feedback before politely asking if we can change the font colour, because it’s not very accessible.

“Of course!” I’m told. “We would never keep yellow font.”

But you put it in there in the first place, I think. I thank the team and we carry on.

A couple weeks later, the new PowerPoint is sent to us in its final form. The font is still yellow.

I think about other conversations I’ve had in my professional life about visual accessibility. About how when I asked my manager to please stop using certain colours in her emails to me, she apologized and stopped immediately. I think about how a coworker used to ask me to help her test signs - she reasoned if I could read them from a certain viewpoint, that would be the level of clarity she was looking for. I think about the wave of panic I feel when reading menu boards at other hospital cafeterias when I’m travelling, because they’re too hard to read. I think about how none of my settings transferred over to my new laptop last time I switched, even though my profile was ported over, and I spent an afternoon fixing my settings again so I could work.

I think about all the ways I’ve made myself small or let things go in the past, to avoid inconveniencing anyone else with the mild accommodations I need. I think about how I would feel if I was new and saw the yellow font for the first time.

I find the link to the Clear Print Accessibility Guidelines and open a reply to the new slides. This time, I’m not asking.

March

I always get pensive around the beginning of March, because it marks the anniversary of my diagnosis, the eye appointment which changed everything. It doesn’t mean anything anymore, just a date on a calendar where the unknown shifted to the known, and it’s an odd thing to mark, but I usually pause anyway. It’s been 18 years and I’ve run through the stages of grief multiple times. One year my nana sent me some money for Valentine’s Day and I used it a couple weeks later to buy myself an anniversary present: a drafting table to paint at.

This March I’m less sad. My last eye appointment was the third which indicated no change, that my prescription is stabilized and so is my cornea. This is good. I am 30, and it’s supposed to stabilize in your thirties. Goal achieved (is it a goal when you have no control over what happens?).

I still make myself some dessert and order out on the specific day. Why not? Look at how far you’ve come, I remind myself. I swore at the cost of getting new brakes on my car not long ago, but I can drive, a thing I never thought was going to happen. There are simple, satisfying pleasures in being able to hop in and go, after 5 years of license-holding. I’m grateful for it everyday.

April

My sibling texts me one morning while I’m out on a walk. They had their second surgery for our shared disease earlier this week, and they’re healing well, just letting me know and checking in. I ask how they’re feeling, how the pain is, who their ophthalmologist is again. We drift from the post-op talk to which of their friends are going to medical school to wider discussions of privilege and professional degrees.

It is no one’s fault, but my sibling has a far milder case than I do. They wear reading glasses. Their damage was caught sooner, but also they were older than I was when diagnosed. They were able to ask me, and I offered suggestions on what to choose and why, what they should do the first time around, I pulled out sunglasses and closed the curtains when they came home from their first surgery.

Two of the three of us have the disease. My brother who does not told our sibling and I to stop copying one another. We already have the same nose.

I’m glad my sibling texted me, but I have to swallow a flare of anger back. Even though I think I’m over it, I don’t think I’ll ever fully be there.

May

I’m doing my nightly skincare ritual when my partner holds up his phone, the screen showing a meme for me to look at. “No contacts,” I say, crossly, unfairly.

“Oh, sorry,” my partner says, unruffled. He explains what it’s about.

Once my partner said it was impossible to tell when I was navigating the apartment without contacts at night, because I walked around like I could see everything. I would even pour myself a glass of water, unseeing. He has made it to 30 years old without having ever needed glasses; my world of visual impairment was once unknowable to him. But over the last 13 years, he has come to be even more vigilant than I am, reminding me to take out my contacts if I look a bit sleepy, or demanding to know why I don’t carry false tears or a lens case anymore. He is right, but this is the one last shred of rebellion I cling to.

I’d taken off my glasses to put moisturizer on, and I could have simply put my glasses on to look, or at least get the jist of the meme. Sometimes I’m unfair, expecting him to guess when I’m contact-free for the night. He is gracious, bending his life to understand my limits. He has given up 3D movies. He has found contacts when I’ve dropped them and can’t find them. He has sat in waiting rooms for me to come out with a bandaged eye, and sat in the dark with me when I couldn’t stand light post-op. He bought me my first ereader, thinking it would be helpful (it was). He doesn’t like driving that much, but has done the bulk of it, because we were both 25 when I finally got my license, and still can’t drive at night.

Did he think he would be signing himself up for a life which involved visual impairment when he kissed a blue-eyed girl at 17? Probably not, but he’s taken it on anyway. I asked him once if he just wakes up in the morning and sees things. Confused, he frowned at me before realizing I was laughing, another amusement for me.

I ask what time it is. I could have put on my glasses, picked up my phone. He answers. I hear the smile, it isn’t a chore for him to live in our lopsided world.

June

It’s a lazy weekend afternoon, and I’m bouncing from thing to thing. I’ve already chopped my vegetables for cooking later. I finished a book, I washed my sheets, I did yoga, there’s nothing I want to watch, I already vacuumed. I slide onto Reddit and read a few threads before clicking onto the subreddit for my disease. Sometimes I like to dole out my own anecdotes to soothe people; I find the subreddit intensely frustrating (god it is not the end of the world) and adorably naïve (no you probably didn’t get it from drinking milk/taking an SSRI/swimming with your eyes open).

I try to be kind in what I type. It is not these anonymous strangers’ fault that I’m too far away from the newness of a diagnosis to remember the fear. And it isn’t fair of me to have these thoughts, to get annoyed when someone who can manage it with glasses write about how they never want to wear contacts, to roll my own eyes when I read someone’s optometrist told them they will never be able to work or drive and they believe it.

I will read a few threads, offer a few comments: you’ll be fine, your odds are good, the treatment is effective, I know you can’t imagine it now but it will be less intense in the years to come, I promise, mine’s been advanced for more than a decade.

After twenty minutes, I’ll close the window, and drift to another activity: cleaning the tub or organizing my books. Maybe I’ll paint my nails. In six months, I’ll return to check the subreddit again.

July

I slide into the pool, ready to splash about with my nephew. I watch my partner dive into the deep end, and I wonder, when was the last time I dove in any body of water? I don’t remember. I don’t quite remember either when I stopped being fearless enough to simply wear my glasses to the beach or pool, and swim unseeing. I always liked the magnifying quality of water; I would swim underwater as much as my lungs could stand, eyes wide.

It was probably around the time I fractured my tailbone when I was 19. I was down to the shore near our family home in Cape Breton, slipped on a rock and went down hard. I didn’t notice the rock was slimy till I was sitting next to it.

It was gradual, a closing off as I lost more vision, as I had another surgery, as the contacts got more expensive. I could get well-fitted goggles now, I think. Then I could swim underwater again.

I tried disposable contacts briefly, just for swimming. They don’t come in my prescription, but high enough that it would be just a little blurry, not dangerous.

I hated carrying two sets of contact cases, different solutions, and my glasses, just in case. No, that didn’t work. But would goggles make me feel safe enough with my very expensive lenses?

My nephew begs me to jump in the pool with him. I shake my head, I can’t do it.

August

Too much beer and too much smoke, everything is blurred, my eyes feel dry. I shut my eyes a moment, trying to will them some moisture, trying to keep from having to stumble inside and try to remove my lenses. And then make a decision about coming back out or not. How familiar am I with this yard? Will I be able to make it back out to the fire without rolling an ankle? How much have I had to drink? I love these nights, family and friends around the fire, trying the latest craft beers, eating my weight in s’mores and hot dogs, showing off my excellent marshmallow toasting skills. Last summer my nephew announced he didn’t like toasted marshmallows, after I made him the perfect one. Maybe this year he’ll appreciate it.

I blink again, I look away, I swallow some more beer. Maybe not the best choice, but blinking seems to have bought me some more time. I love woodsmoke, but my eyes disagree this late at night. I will pay for it later. I mentally picture where the little plunger to help break the seal of a scleral contact is. I don’t use it much but tonight, I’m going to need the help.