Ophthalmology Technicians are Blinded by Ableism (or “Why is SpottedBrownCat Mad?”)

So today I had an annual visual field test. Basically I stare at a dot while a technician moves a laser pointer around the dot from behind me, and when ever I see the laser pointer dot, I press a buzzer. I do these every year because it’s really hard to measure the pressure in my eyes because of my condition, and the tests help us detect whether my pressure has been high enough to cause vision loss. It’s a reactive measure rather than proactive, but whatever. And since I have vision in both eyes, they always test both eyes. These tests are how we know my glaucoma medication is working for me and my pressure has been stable for years. 

Today, the technician (whom I always see. She wasn’t new) took one look at me and said “Since your left eye is gone, we only test the right eye today.” I was confused. I know I woke up with a left eye today and I’m pretty sure I brought it with me. I told her it’s not “gone”, vision hasn’t changed as far as I’m aware. She says “Yes but you only see shadows so there’s nothing to test.” I’m sort of used to this conversation so I went into my well rehearsed explanation of how I see shapes and colors and motion and, in the right conditions, even some details. Certainly enough to detect bright dots floating around on a screen. And anyway, I’ve done this test with both eyes before and it was ordered for both eyes by my doctor. 

She isn’t listening. She keeps cutting me off and repeating “so just shadows.” Finally she has me covered my right eye and she holds up some fingers and asks how many I see. The room is very dimly lit, she has a glove on her hand that blends in with the machinery behind her, and she isn’t being considerate about where exactly she holds her hand. Basically, what could have been a standard assessment of vision was no better than a rude question from a mildly intoxicated stranger at a bus stop.  But I still tell her correctly that she is holding up two fingers. Then, three fingers. And then a third time, I incorrectly declare that I see one finger.  The technician gets an ”aha!” look on her face (which I could see, by the way) and scolds “see now, don’t lie. You waste everyone’s time by lying, if you can’t see it just say you can’t, but lying and making up numbers when you can’t see anything causes problems for us.” 

Do you know what I was seeing in that moment? RED. And I don’t have any of the restraint I had before kids, guys. I scolded her right back with a “Hold on, absolutely not! Do NOT try to tell me I’m lying when I tell you what I see. I am not about to sit here and put up with that kind of ableist arrogant gaslighting. You asked how many fingers I saw and I told you. What do you think vision is like a flashlight and it’s either on at 20/200 or better, and entirely turned off otherwise?” She proceeded to argue with me about the one finger test I got wrong and then finally said it’s too early for this and started the visual field test for my right eye only. She completely refused to test the left eye. 

My right visual field tested perfect. I wasn’t surprised. It always does. 

She went on to accuse me of cheating and pressing the buzzer when I didn’t actually see any light. 

I picked up my 15-month old daughter, who was sitting on the floor next to me through all of this, and I walked out. 

I did not ask her to count the finger I was holding up as I left. I wish I had. 

I did tell my doctor every detail of this encounter. He was pissed he didn’t get the test results he ordered. He wants me to come back another day to finish the test with the left eye he can confirm I definitely did not forget to bring with me. 

He put a note in my chart to never have that particular technician see me again. And he escalated a report to management about her conduct. 

I’m still mad. 

How I Solved Bedtime (Tonight)

I am, unapologetically, a first time mom. This is my newest hat. I also wear the hats of an artist, an entrepreneur, a former teacher, a scientist, and an engineer, among others. All of this is to say I know what it feels like to be learning how to do everything for the first time. That’s why I think it’s really important to share the journey in all its raw, honest, messy beauty. When ever you’re learning something for the first time, it helps to know that this road has been traveled before. At least, it helps me.

With that said, here is the story of how an espresso-induced flash of insight and a single wet wipe solved my 10-week old son, Heleon’s latest sleep regression, and a breastfeeding struggle I’ve faced for over a month, ultimately saving bedtime!

First, lets lay out the problems. Heleon has been a decent sleeper since he was born. He wakes a few times a night to nurse, fewer as he grows, and he goes to bed like clockwork between 7 and 8 at night with no trouble. At least until about a week ago when our bedtime routine of blissful bubble baths, songs, and a dramatized recitation of “Goodnight Moon” has turned into hours of nonstop screaming and tears (mom’s and baby’s). The most notable difference between these recent bedtimes, and the lovely, easy ones by which I’d been spoiled, is that little dude is obviously very hungry, but refuses to eat! Sure, he’ll try to nurse. He’ll look for the breast, make sucky faces, even try to latch, but as soon as he’s about to start feeding, he arches his back, jerks his head away, and starts to cry an unmistakable infant “NO!”. Eventually, he exhausts himself and falls asleep, at which point I drag myself to the bathroom, wash up for bed, and wait the half hour it will take for him to wake up hungry. Incidentally, once he does wake up, he latches and nurses normally and then sleeps well.

This pattern probably doesn’t sound that unusual for a 10-week old. At least, I know many moms and dads who have told me not to worry about it, as long as he eats normally at other times, is gaining weight well (and he is!) and doesn’t otherwise appear ill, he will likely just grow out of it. And that’s the reassurance I’ve been rolling with each night. But this is where my scientist hat gets in the way. I want to understand things, especially when they change. Well, tonight, my inner scientist made an observation, hatched a hypothesis, and tried an experiment.

Bedtime was going slightly better than usual. It was a good day, overall. After a rough night, I decided this morning to treat myself to a fancy coffee drink from Starbucks. My husband, Tim, stepped up to help me have a better day as well, and made sure I got a full hour to myself today to take a shower and otherwise care for my body. Any new mom will tell you this is a valuable gift, and it’s something I have been neglecting more often than I’m comfortable with lately. This all set the stage for a great day in which I felt well equipped to handle anything motherhood threw at me. So bedtime started off smoothly, and Heleon nursed from one breast with no problem. He was still hungry, though, so I tried to offer the other breast before putting him to bed. That’s when it all went south, fast. The breast refusal commenced. Now I’m confused, but on this exceptionally good day, I am for once not exhausted. I set the baby down for a moment and had a look at my own breast (something every woman ought to do more often; boobs rock!). Why didn’t he want it? It had plenty of milk. Hell, it’s been leaking for the past few hours! … That’s when it hit me.

Babies are born before their sensory system really comes online. They can’t see well yet or understand what they’re feeling or hearing. The one thing that’s actually overdeveloped at birth (relative to later in life) is their sense of smell! Babies have amazing little noses! They can learn what mom smells like and notice her from across a room. They can breastfeed before they can see, and even latch in the dark, because they know the smell of milk. It makes sense in an evolutionary context, because recognizing the smell of safety and food would be necessary survival skills. That was the key. If my baby knows the smell of good food, maybe he knows the smell of bad food — spoiled, dangerous food — as well. Here’s where motherhood stories get messy. I smelled my breast. Sure enough, it smelled like the hours-old milk that had been leaking into my bra on that side all evening. The other breast, which for some reason had not leaked today, had no odor at all that I could detect. Heleon would happily latch again on that side, then protest again as soon as I moved him back to the other.

The solution I tested seems stupid simple given the length of this story. My husband brought me a water wipe and I just cleaned away all the stale milk. I immediately tried offering Heleon a feed again on that side. Sure enough, he latched right away and drank himself into that limp and happy baby delirium any mom would recognize as “milk drunk”.

In retrospect, it seems pretty obvious. We’ve had bouts of the same breast refusal on occasion during the day, too, for months. And I realize, in hindsight, that it happened most often in the late afternoon, when I’ve likely been leaking milk throughout the day,l. It happened more on those days when a thorough shower just wasn’t on the mom agenda. It’s embarrassing to realize my baby was just trying to tell me my boobs stink. So why am I publishing this story on the internet?

Because we’re all learning to do things for the first time. Because motherhood is hard, and breastfeeding is even harder. Because women rediscover their bodies and the ways they function and the kind of care they need over and over again throughout our lives, and many of us navigate these moments alone. We learn that it’s socially costly to talk about the things our bodies do, even the wonderful, beautiful things, and I want to lower that cost. Most of all, I’m sharing this because I’m proud of it! Problem solving feels amazing, no matter the context. When we do it, we should all celebrate it and share the solutions we find with others. You never know who among your friends is trying to solve a similar problem.