Not Fade Away: A Memoir of Senses Lost and Found Read Free

of knowing the things that I would lose, or might never have.
    For me, those were years of not being treated differently or feeling isolated, of having a chance to gain some sense of myself before this became part of who I was and who I would become. I feel so lucky that my disabilities didn’t define me as a child and for what my eyes and ears have had a chance to experience. I have been able to see so much beauty, to read, to look into people’s eyes, and to hear music and laughter and the voices of everyone I love. I have created memories that will stay with me long after my eyes and ears have lost their ability to capture new ones.

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    A normally sighted person can see one hundred eighty degrees without turning her head. Today, I can see less than ten. The scientific explanation for retinitis pigmentosa, or RP, is that the retina, made up of photoreceptor cells, those rods and cones we learn about in science class, die. But the better understanding of what it’s really like is described by its common nickname, “donut vision.” I have a donut-shaped ring of blindness floating in my field of vision, and the donut gets bigger and the hole gets smaller every day. I have a sliver of vision left on the outside of the donut, at the outermost edge of my peripheral vision, and I can see straight ahead through the hole. But everything else, all of the donut, is gone. I’m left with about a square foot of vision directly in front of me, and every day, a little bit more of the world is taken from me. It sometimes feels like the end of one of those old Warner Bros. cartoons on TV, where Bugs Bunny sits in the center of the screen waving good-bye as the picture becomes an increasingly smaller hole, until it’s finally gone, leaving only blackness.
That’s all, folks.
    For a while, when my eyesight first started to deteriorate, if I was somewhere familiar my memory would fill in what I couldn’t see. When I was younger I would move my eyes rapidly from side to side, scanning to be able to piece together a complete picture. I still do this, but as my vision loss has progressed, the donut hole becoming increasingly smaller, I can no longer overcome the blind spots. People now appear in front of me as if out of nowhere. I’m unable to see them approach me from my periphery, and then suddenly there they are, in the tiny center hole of my vision. It’s like a startling and unpleasant magic trick, one that I never get used to.
    Often, my brain creates made-up images in an attempt to compensate for the vision I no longer have—for a long time, I kept a frying pan by my desk at home because when I was at the computer, my brain kept projecting a peripheral image of a man walking through my apartment, or sometimes standing right at my shoulder. With a huge gasp, I would jump out of my chair, and then, like in a horror movie, he would be gone.
    When I’m sitting across from someone in anything but bright light, I can no longer see their full face. I can’t see their expressions: what’s going on between their eyes and their mouth, how their cheeks are moving or the arch of their eyebrows, the subtle shake or nod of their head. I can see pieces, but never the whole picture. If I’m introduced to someone in a dark, noisy room—like a dimly lit bar or restaurant—not only do I usually miss the name of the person I’m being introduced to, I generally have no idea where they’re standing, and I don’t know where I should be sticking my hand out to greet them, so I just give it my best shot. I usually get it wrong, and sometimes I don’t even know if I’m meeting a man or a woman. Once, in a crowded club full of pounding music, a friend introduced me to a guy she knew andleft me alone with him while she went to get us drinks. I leaned in toward him a few times to comment on the music and the crowd, despite the fact that I could barely see or hear him. I’m not sure when he wandered away, or if he said good-bye, but I kept right