I drove for a little while as I took that in. “Just—wait.” I paused. “You’re losing your vision so you—” I stopped again. “My mom has to wear reading glasses now and she never did when she was younger—what are you saying?”
“I have a fairly rare disorder that’s causing me to lose my eyesight. When I’m older, I’ll be completely blind.”
“Blind?” I echoed. “Not seeing at all?”
He explained more. “It started when I was a kid, I guess. I never knew anything different but as I got older, it got worse. Light always bothered me, like it was too much and I was squinting, or it was too dark and I couldn’t see well. I was also losing my peripheral vision but I didn’t recognize it. I thought it was the way everyone saw the world and it was gradual, not overnight. But as a quarterback, having a visual of the entire field is essential and I was missing things, not spotting guys who were open and not noticing when I was about to get hit. Finally, someone suggested that I get my eyes tested and I went. When Ilooked straight in front of me, it was great. Perfect. But I found out that my field of vision was much narrower than what most people have, and I could tell by the doctor’s expression that something was really wrong. They kept on testing me and they found out what it is.”
“It’s a disease?”
“It’s inherited,” he said. “It’s progressive. There’s nothing anyone can do to stop it.”
Again, I couldn’t seem to find any words, not right away. Then the only thing I came up with was, “Nothing? You can’t do anything? Like, nothing?”
“I don’t smoke and that’s good for eye health. I eat well, I wear protective sunglasses. That’s about it,” he answered. “I just have to hope that my vision loss goes slowly.”
I kept driving, faster than he usually went, and now I understood the reason why he did that. I eased the pressure on my accelerator but we were already approaching his house and I had a lot of questions. When someone told you news like this, were you supposed to bombard them with requests for information or were you supposed to just nod sympathetically? If I did that, would he see me or did I need to give a verbal summary of my actions?
I chose that option. “I’m nodding to show that I understand,” I said clearly and distinctly.
“Molly, I’m not hard of hearing and I can see your head moving.” Shane didn’t sound angry or sigh-y and I was glad. “Is there anything you want to ask?”
There was a lot, actually, including having him repeat his official diagnosis a few times so that I could look it up later. I wondered more about medication and treatments, but he said again that there was nothing. “Maybe gene therapy sometime in the future, but who knows how far away that is? I’m not holding my breath,” he answered.
“If it’s genetic, does that mean other people in your family also have it?”
“My mom is a carrier and she passed it to me. One of my sisters, the youngest, is also a carrier. Neither of them has any symptoms, at least not yet. It’s mostly a problem for boys, not girls.”
“If your mom knew—” I stopped. Had she given birth to four children with the understanding that they could all lose their sight?
“She didn’t know. It got passed to her by her own mom, but my grandma didn’t have any issues with her eyes and there wasn’t anything like genetic testing back then. My mom never met most people in her family, including her own grandparents, but she did some checking on them after my diagnosis. It turns out that her great-uncle was completely blind. It’s probably been passed down for generations. It’s not my mother’s fault.”
I still felt like she should have known what was happening in her own family, but I left that to move on to something else. “You said that you would totally lose your sight when you get older,” I said. “What does that mean? What’s ‘older’ to you?”
“It means that by the time I hit forty, the deterioration will probably ramp up and my vision will start going downhill a lot faster. I won’t be driving, for example. But it’s different for everyone so I don’t really know. It’s just the doctors’ best guess.”
Turning forty had always seemed like it was centuries away, but I had believed the same thing about turning eighteen and then twenty-one, and those milestones had flown past before I even realized. Forty was so close and so much depended on vision—like his employment!
“How will you do your job?” I remembered him with his binoculars at the Junior Woodsmen games, watching so intently that he didn’t even notice my presence.
“Here we are,” Shane said, pointing to his driveway. “Thanks for the ride.”
I was still waiting for his response to that last question but I didn’t get one. I waited until he went to the door and then turned to wave goodbye, but I couldn’t just say goodnight and go home to snuggle in bed.
I jumped out, too. “Are you going to the stadium tomorrow?”
“Airport.”
“Because I could pick you up and bring you over to get your car,” I offered. “It would probably be easier. I may have a lot more questions by tomorrow, if you don’t mind answering them.”
“Do we have to do that?” he asked. “You could look it up and find out more than I could tell you. I’m not much of an expert.”
He wasn’t an expert about his own condition? “I still want to pick you up,” I stated. “I won’t ask more questions, though. I promise.” I wasn’t sure why I felt the need to assure myself that he would be ok in the morning—but I did have that need.
“You don’t have to take care of me. That’s what my parents think, too, and my sisters. No one has to take care of me.”
“Oh. Ok.”
“So…” He glanced over at my car. “So, you could leave now.”
