Page 13 of Stops Along the Way
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 therealtour,” 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 reactto an early diagnosis right now because of the wholeno curething, 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 Idon’tget 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 fullyseeingme, 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.”
Chapter Five
Tuesday afternoon I stroll around the quad in front of the building that Amelia ran in to drop off her last final assignment, but it’s been twenty minutes and there’s no sign of her yet. It’s entirely possible the professor made them stay for something or she’s chatting with a friend; either way, I don’t know whether I’m stuck here for a few more minutes, or even hours if the professor is keeping them for the entire scheduled exam period duration.
It’s a nice spring day. Sixty degrees that is almost too warm but will soon be a distant dream when the sweltering summer heat emerges in full force. The campus is quieter than I last saw it during the hustle and bustle of freshman move-in because everyone’s studying or taking tests or finishing up last-minute papers or lucky enough to already be on summervacation but still hanging around here with friends. I sit on a bench right outside the relatively newer 1980s-style building, waiting for my sister and wondering if I look like a college student already.
Because in three months, I will be.
