Losing Sight, Gaining Vision

Confronting his own vulnerability, the author learned that while we can’t always control what happens to us, we can control how we respond.

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I met and got to know Juan José not because he’s blind but because he’s a close friend of two close friends of mine, Joel and Nicole. We all had dinner together in a restaurant on the Upper East Side of Manhattan. Juan José — who was then Mexico’s permanent representative to the United Nations — came with his romantic partner, Mariangela, an Italian diplomat who also worked at the U.N. They’re a great-looking, globe-trotting, multilingual couple, and that’s probably what most people’s first and most lasting impression of them is. But what intrigued me that night were the whispered directions that he was getting from Nicole.

“Asparagus at two o’clock,” she would say, a reference that had nothing to do with the hour. “Beef at six o’clock.” This was information that recast the plate in front of him as a giant timepiece. Nicole was telling him where to steer his fork to connect with the various components of his meal. That was pretty much the only evidence that he couldn’t see — that and the fact that when he and Mariangela arrived, they maintained physical contact for most of their approach to the table, a gesture that was one part display of affection, one part navigational assistance. When you spoke with Juan José, he looked you straight in the eye and held your gaze. When someone else spoke, his head turned that way as quickly and confidently as anyone else’s. Once he’d figured out, via those verbal cues and the subtle movements of his fingers, where everything in front of him was, he didn’t fumble for objects or seek additional help.

Many months later, I was at a dinner party with him and about 12 other people, including my friend Alessandra. When she and I discussed him afterward and I referred offhandedly to his blindness, she had no idea what I was talking about. She had sat mere feet from him for about four hours and never picked up on it.

That’s not because he hid his disability. It’s because he had adapted to it so fluidly and fluently and didn’t go out of his way to mention it. But when I asked him how he lost his sight, how he adjusted to that and how it affected him now, he answered me in great detail. He’s proud of his route from there to here. That’s a major reason that he traveled it so successfully: He regarded it not as a burden but as a distinction.

He grew up in the 1960s and ’70s in an -upper-middle-class neighborhood of Mexico City, to parents who provided well for him and his siblings. And he was unremarkable, or at least that’s how he remembers it. He was bad at baseball. Bad at basketball. Soccer flummoxed him: His leg-eye coordination didn’t match his peers’, and if he were playing late in the day, as the light faded, he’d lose track of the ball and even bump into people. He didn’t do particularly well on his schoolwork. At times, he recalled, “I thought I was officially stupid.”

His eyesight was never good. He wore glasses from an early age. But in his late teens, as his vision became almost useless in darkness and semidarkness, his eye doctor realized that Juan José didn’t have anything as run-of-the-mill as nearsightedness or farsightedness or astigmatism. “The guy started to become excited,” Juan told me. “Excited. He was a small neighborhood doctor. He went and picked up a book and said, ‘You have retinitis pigmentosa.’ I was his first case ever. He said, ‘You are going to lose your sight.’ Just like that. ‘By 40, you will be blind, more or less.’ My mother was collapsing. She was in shock. Me? I was not. It’s funny, but I was experiencing some kind of fascination.”

If the doctor’s manner was off-key, his conclusion was on target: Juan José indeed had retinitis pigmentosa, a rare retinal disorder that often asserts itself around the age that he was at that time, is more common among men than women, and routinely leads to blindness within 10 to 25 years. It didn’t have a cure then and still doesn’t have a cure now, but his mother, desperate, toted him to specialist after specialist, not just in Mexico but also in nearby countries.

“She was ready to turn the world upside down,” Juan José said. “I was enjoying the ride, really enjoying the ride. It was awful to go to doctor after doctor. But it was fun to go to Colombia. It was an adventure.” It was also an explanation. Of course he hadn’t been an athletic god or scholastic genius: He was putting in much more effort than his schoolmates did to see the words on a page or the ball on a field much less well. Now he understood why, and now there was a novel dimension of his life that set him apart. He even thought to himself, “I’m special.”

Maybe that was a form of denial, which gets a bad rap. Denial comes in handy up to a point. Maybe time has warped his memory. But the response he remembers having in the months and years following his diagnosis was consistent with his responses to blindness in the decades to come. He never freaked out, never gave up, never even brooded, as best I can tell.

He had serious difficulties, physical and emotional, and was at times painfully aware of what he was missing out on. Although his diagnosis absolved him of the conviction that he lacked smarts and, in that fashion, provided motivation to apply himself in college in Mexico and then in graduate school at Georgetown University, those studies required a real force of will. He wasn’t blind yet, but he was on that path, and he had to use particular software and devices to get all of his reading done. He had to push himself.

That was true, too, as he began his career with the Mexican Foreign Service in his mid-20s and rose in the ranks. During that period, he did conceal his vision troubles, an exhausting charade that required a layer of energy on top of all the other layers. He didn’t tell his boss about his looming blindness until he was around 30.

By his mid-30s, his vision was effectively gone. Blindness strained and eventually ended his marriage, in part because it introduced all sorts of logistical complications and changed the dynamics between him and his wife. It also filled him with worry about being a good father to their two little girls, Sofia and Paloma. He didn’t want them to consider him frail and dependent or to be self-conscious about him.

He told me: “When Paloma was five years of age, one of her favorite jokes was when we both were walking on the street holding hands, she would say, ‘Careful of this step!’ when there was none.”

“That’s mean,” I said playfully. We were talking, after all, about a five-year-old.

“No,” Juan José corrected me. “That’s beautiful.”

“Why beautiful?” I asked.

“Because it meant that I’d succeeded.”

“Because she could be light about it? Jocular?”

“Yes,” Juan José said. “Exactly.”

He said he knows what Sofia and Paloma look like as young women and he knows — or feels he knows — what Mariangela, whom he met long after he went blind, looks like as well. His world isn’t a complete blur: He catches small patches of objects, of faces, depending on how near they are and how much light is falling on them. He spots contours. They’re like pieces of a jigsaw puzzle that he can build over time in his brain. He does the same with places, especially if he’s been somewhere before.

He retrieves images from memory and grafts on the few details from the present that he can gather and assemble. The faces that are wholly inscrutable are the ones of strangers he passes on the street. They’re there too briefly and move too quickly for him to put together his Picasso of them. That bothers him. People with good vision, he told me, underestimate the diversion, the solace, the company of those faces. “You make eye contact,” he said. “You read expressions. You’re more or less communicating with those who are walking past you. You connect just by seeing.” He paused. “It’s a lonely world, this one of not seeing.”

But he described many more satisfactions than regrets. And he is convinced that he wouldn’t have had his exciting diplomatic career and attained his altitude of success without the prospect of blindness and then blindness itself. “I am completely grateful,” he said, quickly adding that he knows, when he expresses that sentiment, that people think he has “brainwashed” himself.

But going blind and then being blind steeled his will and concentrated his energy, because he approached his vision impairment as a test that made him and his life that much more interesting. That viewpoint was made possible in part by his parents’ support, the safety net that they provided, and his access to an excellent education. But it was still a mental discipline. A decision. And it was the path and precursor to a confidence that he feels certain he wouldn’t possess otherwise. He isn’t just a high achiever; he’s a high achiever who could so easily have been marginalized, including by himself.

Additionally, he said, losing vision “gave me skills, tools, a way of thinking, a brain that brought me here. For any person with a disability, from the moment you wake up until the moment you are back in bed, you are facing all kinds of challenges, all kinds of obstacles that you have to sort out. In New York, getting to my office, getting out of the car, going through the building, getting to the elevator — the things that you do automatically, without thinking, require strategy and problem-solving for me.” And that’s just a half-hour in the morning. The rest of the day has many more half-hours like that.

His temperament, too, has been forged by not seeing. “I became patient,” he told me. “I think patience is one of the biggest attributes I may have. In all my defects, patience is one of the good things. Because you have to become patient. And you have to become resilient. Why? Because you will need to be with all kinds of little problems all the time or you may get into trouble, and you need to pause and think and be careful.” Otherwise, he said, you walk through the wrong door, down the wrong hall, to the wrong departure gate. You stray into a physically dangerous place or space. The care that he takes to avoid that is a care that informs and improves the rest of his life. Blindness, he said, gets the credit.

“I never saw it as a burden,” he said. “I saw it as a characteristic. You might or might not be happy with how you look. You might wish to be taller or thinner. But you are what you are. To me it was exactly that.”

“Honestly,” he told me, “I have taken full advantage of not seeing.”

Juan José’s story doesn’t suggest that people with disabilities or diseases can just whistle their way through them. It doesn’t insinuate that they’re secretly blessed, and I have no reason to believe that he’d say anything like that. Also, he was speaking for himself, and his circumstances — his family, his talent for optimism, decades of vision before he lost it, aptitude for a job in which eyesight wasn’t essential — gave him a better chance at flourishing than many people have. In addition, he may well be sugar-coating both his past and his present. Many of us do that when it serves us. It can be an effective and prudent method of getting by.

But even if that’s the case with Juan José, the narrative that he tells the world and, more important, himself is a valid one, a cup-half-full version that’s absolutely workable and totally plausible. It’s also an example. It has a moral: While we have minimal control over the events that befall us, we have the final say over how we regard and react to them.

Juan José can’t fix his eyesight, but he can shape his story. He can underscore the themes that he wants to in the cause of contentment, fulfillment, and self-esteem. Shouldn’t he — shouldn’t all of us — do exactly that?

From The Beauty of Dusk: On Vision Lost and Found by Frank Bruni, © 2022 by Frank Bruni. Reprinted by permission of Avid Reader Press, and imprint of Simon & Schuster, Inc.

Frank Bruni is an award-winning New York Times columnist and the author of three New York Times bestsellers. In July 2021, he became a full professor at Duke University, teaching media-oriented classes in the school of public policy. For more, visit frankbruni.com.

This article appears in the March/April 2023 issue of The Saturday Evening Post. Subscribe to the magazine for more art, inspiring stories, fiction, humor, and features from our archives.

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Comments

  1. This is an excellent feature giving us all much to think about and appreciate what we take for granted, and should not. It’s given me a lot to reflect on and, hopefully to everyone who’s read it (or will) here, or in the magazine.

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