I sit. My hands twist together in my lap.
Ani settles into her own chair and opens a folder—my folder, presumably. “So, Dr. Haggerty’s office sent over your medical records. Leber congenital amaurosis, late-onset presentation. That’s quite rare.”
“Yeah, I’m special like that,” I say with a weak laugh.
She smiles gently. “How are you doing with everything?”
“Oh, you know. Living the dream.” I pause. “A nightmare dream. A nightdream. A dreammare?”
Ani’s smile doesn’t dim one bit. “I think that’s a perfectly reasonable response to what you’re going through.”
I let out a breath I didn’t know I was holding. “Is it? How sure are you about that?”
“Very sure,” she promises with a laugh. “Lots of things are changing for you and I’m gonna wager a bet that you didn’t ask for many of them. That’s challenging. But it’s my job to assure you that you are not alone in this, Eliana. You have a huge community of people who are eager to help you at every step of the way.”
Another pound of pressure eases off my shoulders. She’s so genuine and straightforward that it’s impossible not to believe her.
She hit on something, too.Alone.What a word. Mom used that when she yelled at me the other night, didn’t she?
At least I’m not alone. I have someone.
Is this gut-wrenching fear of loneliness somethingshegave me? A genetic gift she passed down? Like, when I was born, she said,Here, honey, have my hair, my bunions, and my abject dread at the thought of spending so much as a single minute by myself?
And if so, is Bastian the answer to that fear? For so long, I’ve watched my mom try to fill the hole in her heart with men who couldn’t have cared less about filling it. One Derek after another.
What if Bastian ismyDerek?
Or, even more terrifying: What if he’s not?asks a probing voice in my head.What if he’s just someone to hold your hand when things get dark? Would that be so bad?
I shake my head to clear the cobwebs. “That sounds really nice,” I say to Ani.
“Tell me,” she continues, “what scares you most about losing your vision?”
That makes me do a double-take. I came here expecting pragmatic talks. Science-y conversations. But we’re talking aboutfeelingsnow, and the shine in Ani’s eyes says thatthisis the important part.
“I guess…” I swallow hard. “I’m scared of being helpless. I’m an independent person, and I don’t like the idea of not being able to do things for myself.”
Ani nods like this makes perfect sense. “Those are very common fears, and they’re valid. But I want you to know that losing your vision doesn’t mean losing your independence. It just means learning new ways to do the things you already do.”
“Okay,” I say. “I’ll pretend I believe you for now.”
“I’ll prove it; don’t you worry. Now, let’s talk about what you can expect as your condition progresses. Dr. Haggerty mentioned you’re already experiencing peripheral vision loss?”
I nod. “Yeah. It’s like looking through a tunnel that keeps getting narrower.”
“Mhmm. That’s very normal, Eliana. Over the next several weeks, that tunnel will continue to narrow. You’ll find it harder to navigate crowded spaces, stairs might become trickier, and low-light environments will be especially challenging.”
“Right. Got it. Can’t wait.”
Ani continues, her hands laced together on the desk in front of her. “You might also notice increased difficulty with depth perception—judging distances, reaching for objects, that sort of thing. Colors may start to fade or appear washed out. Bright lights can become uncomfortable, even painful.”
I keep nodding like a bobblehead, mostly because I’m not sure what else to do.
“Some people also report visual disturbances,” Ani adds. “Floaters, flashes of light, shadows that aren’t really there. Is that something you’ve experienced?”
“No, I—” But then I hesitate. “Well, define ‘shadows that aren’t really there.’”
“Like seeing movement in your peripheral vision when nothing’s actually moving,” she explains. “Or patterns that your brain is trying to fill in where your vision is deteriorating.”
