Most days, I’m not afraid of going blind. I’ve heard words of doom pronounced before, only to be rescinded, and I know when to panic and when not to. I’m doing what I should be doing to preserve the vision I have, and there are new developments all the time that give me hope.
But some days are hard. Some days I get so scared, thinking that the darkness is going to fall at some point and never lift again. There will be a sunset that will be the last one I see, a ray of light that will falter and fade until the shadows swallow it completely, until they swallow me completely. I’ll never see the sun again, never see another flower, never see the faces of the people I love. I’ll walk in darkness for the rest of my life. I know, I know that there’s so much that’s worse. I could be dying. This could be happening to someone I love, instead of to me. But when I wake up in the middle of the night to pitch black and think, someday this is what the world will look like to me at noon, that doesn’t help much.
I love light. I love the sun, the way it can be so far away, spinning and burning, and still light up entire worlds. I love daffodils, which I’ve always thought look like sunlight made into a flower. I love to see my niece’s face and how it changes as she grows, always more beautiful every time I see her, and it breaks my heart that I may not be able to see her as a woman. I want to see her face. I want to see the face of my sister when she looks at her daughter. How often do you get to see happiness absolutely undiluted? But I’ve seen it. How can it be that I may someday never see it again?
But I can hear my niece laugh. I can hear my sister joking with her and being stern with her and loving her; I can hear her father being so funny and patient and good-hearted, and I don’t need to see any of them to know what kind of a woman she’s going to be with parents like that. I can recognize amazing in any language, with my eyes closed and both hands behind my back. And I have time to memorize the faces of everyone I love. I have time to sit by the daffodils and see the way they bloom as if they’re reaching for something, maybe reaching for the sun, like me. I promise you, I will be watching the sun come up every day I can still see it and I’ll turn my face to the sky like those daffodils, and when my eyes fail me altogether I may walk in darkness, but I’ll dream of light.
I’m grateful for the time, and I’m grateful that it isn’t worse. It’s just hard to be brave when you know what’s coming, and it comes little by little every day.