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 Miyazakianimated 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.
This is my fantasy: I’m standing at the Main Street corner in my little New Jersey suburban downtown, waiting to cross the street. As usual, I’m stressed out by the giant SUVs whipping by, oblivious to the crosswalk. But then I remember the “alterations” I made to my ID cane. I whip it out, and it automatically unfolds with a satisfying series of clicks (that part is real, actually). I stick it out in front of me, into the crosswalk. I wait for something to happen. If the next car stops for me, no drama. But if not, it’ll run over my cane, and… POP! “Oh, I’m so sorry, did the razor blade on the end of my white cane damage your tire when you ran over it? I hope it didn’t scrape the paint too badly!”
Oh, that ninja cane! What else can it do? Tune in to the next episode of Disability Avengers to find out…
Ok, maybe I’ve been reading too many of my 11 year old’s adventure books (if you haven’t read Spy School, I highly recommend it). But just think, if my cane could actually DO something, wouldn’t it be a lot more empowering?
I have had a lot of these fantasies in the last nine months, since I lost some of my vision to a multiple sclerosis flare-up…
“You have multiple sclerosis? My cousin cured her MS with a gluten-free diet and qi gong — you should really try it!”
Since I was diagnosed with MS 17 years ago, I have heard many, many versions of this story, though with a rotating cast of miracle cures in the starring role. Some involve mainstream pharmaceuticals; many more are from the world of alternative medicine. I usually politely say, “Thanks for letting me know,” and let it drop. Everyone who tells me a story like this wishes for my good health, and I do appreciate that.
Once in a while, though, someone gets more of a response than she bargained for.