A year and a half ago, I gained a permanent dance partner. That’s what I’ve decided. That’s how I need to think about the damage to my visual field from an unfortunate multiple sclerosis flare-up.
If I were a filmmaker, I’d show my dance partner as one of the monsters from a Hayao Miyazaki animated movie. My monster is big and bulky and squishy and always there, pressed awkwardly up against my left side. Everything I see on the left side of my visual field, in both eyes, is hazy and squashed, and some is obscured altogether. When I try to look at someone through the monster’s mass, that person’s face is melting. One eye is an inch below where it should be, and that side of the person’s mouth smears into his chin. The distortion is different at the bottom. The monster must be giving me a hug, because he presses everything from the bottom of that side upward and toward the center, so my blurry left hand is closer to my face than it ought to be.
The monster means well…
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“Sorry,” I say, “Sorry, but would you mind giving me the directions again a little slower? I have a visual impairment and I didn’t see which way you were pointing.”
“So sorry, excuse me for bumping you, I didn’t see you there.”
“I’m sorry I didn’t think to get permission ahead of time, but I’m partially blind, and I need to bring in a friend to help me. Would that be ok?”
I apologize a lot these days. Constantly, almost. I became aware of it when trying to explain to my friend–the one who was trying to be my able-bodied helper — why my attempt to get a spur-of-the-moment accommodation didn’t work. “I didn’t apologize and grovel enough,” I muttered, feeling cynical. “That works reliably. I don’t know what else to do.”
My friend was indignant. “You don’t have anything to apologize for. You should be able to describe the situation, and they ought to accommodate you.” That would be nice, wouldn’t it? But it’s not, in fact, how it works…
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