Chapter Four #2
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. “Younger sister. I stopped being your little sister 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 full to 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 wear glasses,” 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 between this and that is 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 as My 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 exactly what they 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.
It was a learning curve for me to figure out when I could be helpful versus when I was overstepping.
Easy assistance like reading scene cards or foreign language subtitles on a TV show out loud for her became second nature for me when she still lived at home, but trying to rush her or do something for her when she could do it herself with extra time to look closely was a big no.
The suggested course of action is to get regular eye exams, wear sunglasses, avoid too much vitamin A, and not smoke.
As of now, there’s no treatment or cure.
“Remember the dining hall?” Amelia points to our left, though I don’t remember this exact building. “This is the smaller one on North Campus.”
“I was going to say, I don’t remember this one from the tour.”
When we dropped her off in August, I went on an official campus tour with our parents even though I already knew the schools I was applying to and had been on so many different campus tours that they all blurred together. Still, it was nice to see where my sister was going to be living.
“Well, now I’ll give you the real tour,” she says. “The dining hall sucks. But the nook by the library, which is still on the meal plan, is excellent. I’ve got swipes left—want a bagel?”
“Yes, please.”
The cafeteria is a kind-of-grimy, low-lit, tucked-away spot with only three small tables and a deli counter, but it has the sort of vibe where I can already tell the food is going to be great.
“What do you want?” she asks.
“I don’t know. Whatever you get.”
She goes up to the counter while I grab us a spot at the only open table by the window.
It’s still weird to me that she’s hiding her vision loss from the people she’s met at college. Wouldn’t it be easier if they knew? It feels like Amelia is running away from something, desperate to be someone new.
Anyway, I don’t think I would hide a diagnosis like that. Not from friends. But I’m not in that position, exactly.
At least not yet.
It all comes down to that freaking 25 percent chance.
The likelihood that I’ll also inherit Stargardt disease. Amelia’s condition is genetic, and it’s somewhat common for it to affect siblings.
Parents are usually unaffected carriers, but each of their children has a one-in-four chance to inherit.
There’s new genetic testing that could be done to try to determine if I’ll develop it, but the doctors don’t recommend it as long as I’m still asymptomatic.
A test wouldn’t change anything about how we’d react to an early diagnosis right now because of the whole no cure thing, so it’s usually reserved for the point in time when it could confirm a diagnosis rather than foresee one.
How would I react to knowing this might be inevitable?
It can be hard to keep the anxiety at bay. Knowing there’s literally nothing I can do to change a potential predetermined outcome.
Would I handle it as well as Amelia seems to be? How would I balance losing sight with my existing hearing loss?
Although, there’s a 75 percent chance I don’t get it. Shouldn’t I find that relaxing to hold on to rather than freaking out about the odds that I do?
Amelia grabs food at the counter and turns around, not knowing exactly where I’ve sat or at which table. For a second, she looks directly at me, not fully seeing me, as she scans the other bodies in the room.
It’s strange to have this rare diagnosis on my radar, with the fear of the unknown, while at the same time already watching my sister’s experience.
“Lee,” I call out. She hurries over, following my voice without missing a step, taking the opposite chair and sliding my bagel across the table.
She scrambles to unwrap the sandwich parchment, smiling wide. “Get ready for the best bagel of your life.”