Page 12 of Stops Along the Way
Amelia shrugs it off, deflecting with an “oh, ha, yeah, no” as she quickly puts them away in their case without further explanation, swaps on a pair of regular sunglasses, and changes the subject with “This is my little sister.”
We climb out of the car. “Youngersister. I stopped being yourlittlesister years ago.” I smile at her friend. “Hey, I’m Iris.”
“Yeah, Iris.” Camila nods. She’s in an oversized pair of dark overalls and a light blue baseball hat, with a thick braid hanging over one shoulder while her nearly empty backpack is slung over the other. She’s clutching her similar mess of car-and-campus-related keys on a lanyard matching Lee’s. “Amelia talks about you all the time. Y’all look so similar.”
“We get that a lot,” I say.
“I gotta run to a final,” Camila says, but she pauses to ask, “Catch you later? You’re not heading out soon, right?”
“Yeah, Wednesday,” Amelia answers. “We’ll see you before then. But also…next week!”
Both girls give enthusiastic squeals of excitement before Camila rushes off to her exam.
I step back to the passenger side to grab my stuff, slightly embarrassed to be walking around campus with a bag this fullto the brim. “Is that one of your close friends? You’ve definitely mentioned her before.”
“Yeah, Camila. She’s great.”
Studying Amelia’s face, I ask, “But she hadn’t seen your bioptics?”
“Nah, she usually offers to drive when we go off campus.”
“Why don’t you ever drive?”
“Because I’d rather be a passenger princess.”
I shake my head and fall into step with my sister as she leads us out of the parking lot and onto a campus path. The abundance of greenery on this walkable path away from cars is a refreshing change of pace. “I’m not doing the entire twenty hours back home.”
“Of course not.”
“But she doesn’t know what your glasses are for?” I ask, not able to shake that exchange from my mind.
“I don’t actually wearglasses,” she says, stuck on the distinction, as if I need reminding. But, like, wouldn’t her friend know why Amelia has these special lenses for driving?
“Have you not told your new friends about your vision?”
Amelia shrugs, indifferent. “No.”
I don’t understand how something like this doesn’t come up in conversation eventually. “Why not?”
She quickens her pace, and I have to fight to keep up while carrying this heavy bag and walking side by side enough so that I can read her lips as we talk. She answers with a question of her own: “Why do they need to know?”
“Huh?”
“Like, do you tell every person you ever meet about your hearing aids?”
That feels different, if only because everyone in my life has known me since I was a little kid, when the hearing aids I wore were a lot more visibly apparent. My recent pair isn’t obvious, so I guess I will probably have to explain when I go to college and meet new people.
“I’ve never really thought about it,” I admit.
Amelia is blind similar to the way I’m deaf—neither one of us is living in complete darkness or silence. Deafness and blindness are spectrums, which can confuse people when they meet those of us who don’t embody classic stereotypes.
For some reason, all the gray area in betweenthisandthatis too complicated for many to understand, even though that’s the reality for much of life. There’s something simplistic and soothing about categorizing things, which therefore leads to agitation or even fear when other peoples’ lives don’t fit squarely into easily conceptualized boxes.
Specifically, Amelia has Stargardt’s, which is a rare genetic disease otherwise referred to as juvenile macular degeneration. It’s a progressive loss of central vision, so over time she’ll lose more and more of her sight. Typically, peripheral vision remains unaffected, which leaves some usable vision, but the tricky part is that things you see in your periphery aren’t in full focus.
I’ve tried to ask Amelia to describe what it looks like through her eyes, but she usually explains it simply asMy brain fills in the gaps.
With her current level of vision, if there are a few things on a table in front of her, she’ll generally know where they are but not be able to discern exactlywhatthey are until a closer inspection. Familiar things in expected places are easier to identify, whereas for something unexpected, she usually has to hold it up pretty close to her face to get the full picture. Reading text is often the most difficult aspect, and she has several apps for magnifying or reading aloud.
