Living with my diagnosis

When I got home after my diagnosis, I sat in silence for a long time, trying to wrap my head around everything I had just learned. I tried to explain it to my friends and family—what was happening to me, what I was feeling—but no one really understood. How could they? I barely understood it myself.

That’s when I decided I needed to make a bucket list. Not because I was going blind—I knew I wouldn’t lose all my sight—but because I was going to lose my central vision, and I wanted to experience the things I’d always dreamed of while I could still truly see them.

I wrote down several things, but a few meant more to me than anything else. At the top of my list was seeing my grandchildren. I prayed constantly that my son would have a baby before my vision was gone. I also wanted to travel—to see the places that had lived in my heart for years. Sicily, where my family came from. Hawaii, with its turquoise waters and golden sunsets. And the beautiful island of Martinique, a place I’d always wanted to see just once in my lifetime.

I decided Hawaii would be my first destination. Then Sicily. And, if I was blessed with enough sight left, Martinique.

When I told my boss about my diagnosis, I tried to explain what it meant—how it would affect me, what I could and couldn’t do. The look on his face said it all: panic, confusion, fear. I could almost hear the questions running through his mind—How can she keep working? How long will she be able to do her job? The truth was, those were the same questions I was asking myself.

Still, I wasn’t making mistakes. My work was fine, though staring at a computer screen for eight hours a day was starting to get harder. But I kept reminding myself: it’s a slow disease. I’ll be fine. I’ll make it to retirement.

At my next appointment with the retinal specialist, I came armed with a list of questions. After the usual eye tests and scans, I sat waiting in that cold, bright exam room for answers. When he finally came in, his responses were vague and distant.

“When will I lose my driver’s license?” I asked.

“You’re a long way off—don’t worry about that yet,” he said with a reassuring smile that didn’t reach his eyes.

“How long will I be able to work? How long until my vision really changes?”

He hesitated. “You’re about halfway through the process,” he said finally. “You’re stable for now.”

I wanted to feel comforted, but I didn’t. I left the office with another six-month appointment scheduled, feeling a strange mix of hope and helplessness. I wasn’t in crisis, but I wasn’t in control either.

Walking out to my car, the sun felt blindingly bright, and yet somehow the world seemed dimmer. I didn’t know what tomorrow would bring—how much I’d see, how much I’d lose. All I knew was that I had to make every moment count while I still could.