It was a calm, cold report:
Right now, my eyes are dying. Today, I see less than yesterday. Tomorrow, I’ll see less than today. It will keep getting darker, little by little, like night falling, until the last sliver of sun has set and all the light has died. There is nothing I can do to stop it. There is nothing I can do. There is nothing.
Inarguably, a downer. But not as much of a downer as the general atmosphere in my house.
My parents shuffled around like someone had turned up the gravity dial and it was a struggle to stay standing. Every time I saw my grandmother, she’d start crying and muttering her rosary in Italian, thus creating a vortex of gloom so intense it could’ve sucked the cheer out of Disneyland. An incurable neurotic, she’d spent my whole life worrying about my sisters and cousins and me—calling the police if we were a half hour late getting home from high school, force-feeding us chicken soup when we had the flu—and now, it had finally happened. The nasty twist of Fate she was preparing herself for had arrived and there was nothing she could do to fix it.
There’d been a period of real panic immediately after my visit to Dr. Hall when it dawned on everyone that since my disease was genetic, other members of my family could have it, too; at particular risk were my sisters, Marisa, seventeen, and Jessica, nine. It had been a tense week or so before everyone could get appointments with a retinal specialist (not Dr. Hall, never Dr. Hall again), but finally, it was determined that my sisters, parents, cousins, aunts, and uncles were all unaffected. The crisis was contained in me. Of course by that point, my parents had had ample time to contemplate what it meant, in practical terms, for their nineteen-year-old to be going blind. I can only imagine what they imagined because we didn’t talk about it, but if their hunched shoulders and downturned eyes were any indication, the outlook was not rosy.
I’m sure they were trying hard to mask their grief, but hiding intense emotion has never been a skill my family members possess. It was clear that they were devastated, and this frightened me. I was trying to formulate my own reaction to the diagnosis, and their sadness did not point me in a positive direction. No, the message I was getting was pretty much: “Abandon all hope, ye who enter here.”
About a week after the diagnosis, I walked into my father’s study and found him crying. At first, I didn’t notice he was crying. What I noticed when I walked into his home office, located off the kitchen, was the massive medical volume lying open on his desk. I’d never seen one of those behemoths off the shelf before; until then, I’d suspected they were a front, like a hollowed-out Bible that houses a flask or a pistol. But now my father was sitting at his huge oak desk, always so neatly organized, with his narrow shoulders slumped over the book. The gooseneck clip light was on and he was wearing his reading glasses, turning the tissue-paper pages.
“What are you doing?” I ventured.
He turned to me, and his face looked so crumpled and sagging, I instantly regretted saying anything.
He looks so old, I thought.
“Come here, honey,” he said, beckoning me over to a wooden chair near his desk. Then he smiled, one of those sad smiles people muster up to make you feel better but that have the exact opposite effect.
“I want to tell you—,” he started, and then his voice broke off and he removed his glasses.
My father is not an unemotional man—he gets visibly angry and disappointed and excited—but I’d never seen him cry before, not even when his mother or father or brother died. My dad is the fix-it guy. He repairs things. If you’ve got a splinter, he takes it out. If you’ve got an infection, he prescribes antibiotics. If you’re on vacation and there are five of you and only one bed, he fashions luxuriously comfy sleeping surfaces out of suitcases and outerwear. Broken toasters,