December 27, 2022

"Several years ago, an optometrist ambushed me during a routine exam: 'Do you know you have retinitis pigmentosa?'"

"... I had no idea what she was talking about. She followed with another question: 'Are you night blind?' Indeed, I was. I’ve never been able to see in the dark; it’d been something of a running joke among family and friends since I was a kid. 'Clumsy,' we called it.... I had a progressive eye disease that eventually results in blindness. There’s no cure."

Writes Jon Gingerich in "How I wrote my first novel while going blind – and kept it a secret" (The Guardian).

"I sold my novel last year. In a decision that was fully on-brand, I didn’t tell my publisher I’d lost my vision.... [M]y worst days are the ones when I realize I’m left to work with pieces of myself, that I’ve become unmoored from the human experience in some fundamental way. But... [w]e are a collection of small losses, and each of them have a distinct weight. We have no idea what others are walking around with, the weight they’re carrying on their shoulders.... [C]ommitting to the cane was the most terrifying development yet, because it meant my secret was out.... I felt relief that no one batted an eye. Why would they, anyway?"

"We have no idea what others are walking around with"... unless they use a cane or its equivalent (and we, ourselves, have the vision to see it).

18 comments:

Leland said...

He wasn't just going blind to walk into an optometry exam and get ambushed by a diagnosis of his eyes.

Kate said...

I have a life-long history of ear infections and blockage. It's weird, because if I had actual ear damage I would get a hearing aid. But the condition comes and goes, so my deafness when an ear is closed is temporary. I cock my head, or apologize, or ask people to speak up. It can go on for months.

I sympathize that finally using a cane would provide some relief. Suffering with half a condition is full of half measures.

rehajm said...

[M]y worst days are the ones when I realize I’m left to work with pieces of myself, that I’ve become unmoored from the human experience in some fundamental way.

What does this even mean? Dysfunction and decay are an ever present part of the human experience...

Temujin said...

"[w]e are a collection of small losses, and each of them have a distinct weight."

What a great line...and thought.

Lem the artificially intelligent said...

Norm didn’t tell anybody he was battling cancer.

RMc said...

"How I wrote my first novel while going blind – and kept it a secret"

He kept writing his first novel a secret? Funny, I did the same thing!

Heartless Aztec said...

Touch typing enforced by stern nuns with actively wielded rulers has over the years morphed in typing by voice with read back from the computer. If there was ever a time for a writer to lose their eyesight this is it. John Milton might have changed titled his magnus opus Paradise Found.

Ann Althouse said...

How difficult is writing while blind? Especially with the easy of speech to text and text to speech? If I were going blind, writing creative fiction would seem like one of the best directions to take, and this person was already following that path. It might be hard to write for others if you'd always been blind, and perhaps there are brain conditions where you can't even visualize things in your mind.

Some of the greatest writers in history were blind: Homer, Milton, Joyce, Borges.

Ron Winkleheimer said...

I don't understand why he would say the optometrist "ambushed" him. The optometrist examined him and diagnosed him with an eye disease. In other words, did their job.

Howard said...

Sometimes I don't know whether or not to shit or go blind.

Wince said...

Imagine the reaction to the following:

Donald Trump said...
How difficult is writing while blind? Especially with the easy of speech to text and text to speech? If I were going blind, writing creative fiction would seem like one of the best directions to take, and this person was already following that path. It might be hard to write for others if you'd always been blind, and perhaps there are brain conditions where you can't even visualize things in your mind.

So, maybe it's not the words. It's the name and the voice applied to it in the mind of the listener, after years of media conditioning, that elicits the reaction?

It's interesting to gauge the reaction when you can't "see" who actually wrote the words.

WWIII Joe Biden, Husk-Puppet + America's Putin said...

"[w]e are a collection of small losses, and each of them have a distinct weight. "

She has me - I would like to read her book.

WWIII Joe Biden, Husk-Puppet + America's Putin said...

HIS book. oops.

Howard said...

I'm sad to hear that April. I think of myself as a collection of victories after a relentless series of major injuries. Chin up, old girl. Today is the most beautiful day ever.

madAsHell said...

The story of the barber pole, and medieval paintings of blood-letting always fascinated me.

It turns out, I'm a carrier for hemochromatosis.

Joe Smith said...

Maybe it was all the jerking off...

AlbertAnonymous said...

Night blindness? Yeah, no shit. I bump into things in the dark too.

This guy probably claims he had “college gayness” too. A mild case. He’s over it now.

Joe Smith said...

Not very optimistic...