Together Always, in Darkness and in Light
March 20, 2015 1:03 PM Subscribe
We’re still figuring it out. The thing about slowly losing something that feels indispensable is you’re constantly adjusting to the loss. As soon as you find a comfortable balance, something shifts and you have to recalibrate..It's just a bit dusty....
Intense and emotional indeed.
posted by Fizz at 1:14 PM on March 20, 2015
Sheesh, I don't know what I expected but that was intense and great.
Well put.
posted by Songdog at 1:16 PM on March 20, 2015
Well put.
posted by Songdog at 1:16 PM on March 20, 2015
Argh, this is too close.
This woman has the same disease my brother has, but he was diagnosed in his 40s. I worry.
posted by suelac at 1:19 PM on March 20, 2015
This woman has the same disease my brother has, but he was diagnosed in his 40s. I worry.
posted by suelac at 1:19 PM on March 20, 2015
Oh my gosh, I love that.
One of my all-time favorite novels is Jonathan Penner's Going Blind, which sadly seems to be nearly forgotten. His character-- a professor up for tenure-- reacts to going blind by trying to cover it up. Sometimes the results are funny, sometimes disastrous. A friend of mine who went blind in stages did much the same thing, over a very long period. Kear briefly shows us something similar. ("Because I had no other resources in place for support, the onus fell to David, who became my surreptitious seeing-eye guy.") What I love about this essay is the way it suggests how this process impacts relationships; I look forward to reading more in her book-- which I immediately purchased!
posted by BibiRose at 1:31 PM on March 20, 2015
One of my all-time favorite novels is Jonathan Penner's Going Blind, which sadly seems to be nearly forgotten. His character-- a professor up for tenure-- reacts to going blind by trying to cover it up. Sometimes the results are funny, sometimes disastrous. A friend of mine who went blind in stages did much the same thing, over a very long period. Kear briefly shows us something similar. ("Because I had no other resources in place for support, the onus fell to David, who became my surreptitious seeing-eye guy.") What I love about this essay is the way it suggests how this process impacts relationships; I look forward to reading more in her book-- which I immediately purchased!
posted by BibiRose at 1:31 PM on March 20, 2015
I was diagnosed with the same degenerative eye disease two years ago, and I’m experiencing the same (early) symptoms she details here. Reading this terrified me.
posted by tiger yang at 1:51 PM on March 20, 2015 [4 favorites]
posted by tiger yang at 1:51 PM on March 20, 2015 [4 favorites]
One of my all-time favorite novels is Jonathan Penner's Going Blind, which sadly seems to be nearly forgotten.
BibiRose, it's not the exact same situation but you might enjoy reading a memoir that was recently reviewed in the New York Times: Girl In the Dark by Anna Lyndsey.
BibiRose, it's not the exact same situation but you might enjoy reading a memoir that was recently reviewed in the New York Times: Girl In the Dark by Anna Lyndsey.
Anna Lyndsey was young and ambitious and worked hard; she had just bought an apartment; she was falling in love. Then what started as a mild intolerance to certain kinds of artificial light developed into a severe sensitivity to all light.posted by Fizz at 2:05 PM on March 20, 2015 [2 favorites]
Now, at the worst times, Anna is forced to spend months on end in a blacked-out room, where she loses herself in audiobooks and elaborate word games in an attempt to ward off despair. During periods of relative remission, she can venture out cautiously at dawn and dusk into a world that, from the perspective of her cloistered existence, is filled with remarkable beauty. And through it all there is Pete, her love and her rock, without whom her loneliness seems boundless.
God damn that was beautiful. She found a mensch (and at such a young age!)
posted by notsnot at 2:27 PM on March 20, 2015 [1 favorite]
posted by notsnot at 2:27 PM on March 20, 2015 [1 favorite]
Somehow this story has affected my own eyes. The dominant symptom appears to be some kind of clear watery discharge.
posted by humanfont at 6:28 PM on March 20, 2015 [3 favorites]
posted by humanfont at 6:28 PM on March 20, 2015 [3 favorites]
Very moving. I can't begin to imagine what I'd do without my eyesight.
I'm reminded of the forger in The Great Escape, going blind but desperate for nobody to find out, carefully pacing the dimensions of his room and leaving a pin on the floor as "proof" that he can still see.
Side note: what in the world does "a ... baby with bee-stung eyes" mean??
posted by rifflesby at 8:10 PM on March 20, 2015
I'm reminded of the forger in The Great Escape, going blind but desperate for nobody to find out, carefully pacing the dimensions of his room and leaving a pin on the floor as "proof" that he can still see.
Side note: what in the world does "a ... baby with bee-stung eyes" mean??
posted by rifflesby at 8:10 PM on March 20, 2015
One of my oldest friends has been experiencing macular degeneration since her teens. She is almost completely blind now, with a small amount of peripheral vision. Her marriage ended several years ago, and her students now comprise a good part of her support network.
posted by computech_apolloniajames at 8:20 PM on March 20, 2015
posted by computech_apolloniajames at 8:20 PM on March 20, 2015
Lovely story. Thanks for posting a link to it!
posted by rmmcclay at 8:34 PM on March 20, 2015 [1 favorite]
posted by rmmcclay at 8:34 PM on March 20, 2015 [1 favorite]
Beestung eyes? Is that a common expression I've never heard of?
posted by Carillon at 8:49 PM on March 20, 2015 [1 favorite]
posted by Carillon at 8:49 PM on March 20, 2015 [1 favorite]
Saving a troubled marriage by adding a baby doesn't seem like a winning plan.
posted by jewzilla at 10:31 PM on March 20, 2015 [2 favorites]
posted by jewzilla at 10:31 PM on March 20, 2015 [2 favorites]
I don't trust this guy. I'm worried for her. He suddenly wants another baby, resents her for needing his help...I'm afraid for her. She's in a very vulnerable position.
It's weird how she blames herself, like it's okay that he resents her, as though not wearing heels and not putting on makeup evenly and effing going blind justifies his annoyance with her. I'm kind of curious why he suddenly wants to put her through pregnancy and have another child. He seems untrustworthy and I don't get it.
She needs good friends and more people to rely on than this guy.
posted by discopolo at 1:17 AM on March 21, 2015 [1 favorite]
It's weird how she blames herself, like it's okay that he resents her, as though not wearing heels and not putting on makeup evenly and effing going blind justifies his annoyance with her. I'm kind of curious why he suddenly wants to put her through pregnancy and have another child. He seems untrustworthy and I don't get it.
She needs good friends and more people to rely on than this guy.
posted by discopolo at 1:17 AM on March 21, 2015 [1 favorite]
As a quick aside, all US states have a department of disability services, often that house assistive technology that a constituent can try, via a library-like system, to see what works for their limitations. As someone who occasionally works with both newly diagnosed people and those whose limitations are going beyond the band-aid plan, more people need to be aware of this information so people with disabilities are not at the mercy of a purchasing system, and it helps with independence/autonomy.
Great post - it provides great insight into the struggle to adapt to progressive sensory limitations, as well as "finding the tribe" Vision Impairment is very robust, which is why I mentioned the other state resources - there is more out there that supports the diversity within disability.
posted by childofTethys at 9:07 AM on March 21, 2015
Great post - it provides great insight into the struggle to adapt to progressive sensory limitations, as well as "finding the tribe" Vision Impairment is very robust, which is why I mentioned the other state resources - there is more out there that supports the diversity within disability.
posted by childofTethys at 9:07 AM on March 21, 2015
Discopolo, I had a slightly different read - that she had found autonomy and ability once she was connected with the Village of Support. It seemed that they both grew into the reality of finding best practices and stepped away from co-dependence and dysfunction and re-balanced. She's writing candidly about her relationship which signals healthy v controlling behavior.
I did have some hmmm moments when they were younger, and Knight In Shining Armor types are candidly discussed in communities aligned with disability, as well as parenting best practices. I wish them happiness.
posted by childofTethys at 9:26 AM on March 21, 2015 [1 favorite]
I did have some hmmm moments when they were younger, and Knight In Shining Armor types are candidly discussed in communities aligned with disability, as well as parenting best practices. I wish them happiness.
posted by childofTethys at 9:26 AM on March 21, 2015 [1 favorite]
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posted by quadbonus at 1:11 PM on March 20, 2015 [1 favorite]