NYT Columnist Frank Bruni on Vision Loss and Life in Perspective

In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.

September 19, 2019

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In this episode, New York Times columnist Frank Bruni shares the story of his sudden vision loss from NAION.

To read more of Frank's work, visit his New York Times page, follow him on Twitter and check out his previously published books.

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Hadley

Hadley Presents: Frank Bruni

Presented by Ricky Enger

September 19, 2019

Ricky Enger: Welcome to Hadley Presents. I'm your host Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts.

In this episode, we're joined by New York Times columnist Frank Bruni, sharing his experience with vision loss. Welcome to the show Frank.

Frank Bruni: Hi, thanks for having me.

Ricky Enger: Hey, thanks so much for being here. So you've had actually quite the interesting career, but for those who don't yet follow you, why don't you tell us a little about who you are and what you do?

Frank Bruni: Well, I'm a New York Times writer. Right now, I write an op-ed column that appears twice a week plus a weekly newsletter, but I've been with the Times for, it's getting close to a quarter century, 25 years, and I've had one of the more sort of eclectic careers at the Times. I was a religion reporter in the beginning for a while. I did a lot of politics and covered George W. Bush's 2000 presidential campaign for the Times. I was this sort of main reporter on his plane. I was the Rome bureau chief, I was the chief restaurant critic for five and a half years, and I've been doing the op-ed column I think for about eight years now. I've also done a whole bunch of arts and culture reporting and long profiles of celebrities, so it's been, as I said, very, very eclectic.

Ricky Enger: For sure. And you're a foodie as well. I think you've actually written a couple of books related to food. Yeah?

Frank Bruni: I wrote a memoir that was basically about my eating life, it is called Born Round. That came out in 2009. More recently, I wrote an all meatloaf cookbook. And in between those things, just to show you how all over the map I am, I wrote a book on the college admissions mania and why you shouldn't be so obsessed about getting into a school with an acceptance rate below 10%. And a years ago I wrote a kind of portrait of George W. Bush's campaign called Ambling into History.

Ricky Enger: Nice. So there's a lot out there for people to read in terms of your writing.

Frank Bruni: If they want to, they can get very sick of me, yeah.

Ricky Enger: I've got to read your meatloaf book just to see if you're part of the ketchup contingent or not. I'm looking forward to finding out.

Frank Bruni: Depends on the loaf. There are 50 loaves in there. So you know, a lot of different condiments.

Ricky Enger: So you have been fully sighted all your life I believe, and then quite suddenly, you were not. Why don't you tell us kind of how that came about?

Frank Bruni: In October of 2017 I guess it was, I woke up one Saturday morning, it was a Saturday morning of Columbus Day weekend. As the morning went on, my vision felt weird. It was weird, but not disastrously so. As the morning went on, I thought something's wrong, and I kept on thinking that I had some gunk in my eye or maybe my glasses were dirty or maybe I didn't have enough caffeine in my system or whatever. Only as the day went along and I began opening and closing one eye, the other eye did I realize that the vision in my right eye was profoundly blurry in a way that was not remedied by running cold water, running warm water over it in the shower, cleaning it out or anything like that. And over the next couple of days I went to see my normal ophthalmologist.

He kind of had a sense that it might be some sort of optic neuropathy and he sent me to a neuro ophthalmologist who diagnosed me with something called an NAION, that's the shorthand for it, which, and I may get this wrong, I think it stands for Non-Arteritic Anterior Ischemic Optic Neuropathy. And what it basically means is that I've had what physicians kind of colloquially referred to as a stroke of the optic nerve. And for reasons that are not entirely clear, at some point overnight that night, and this most frequently happens to people to whom it happens. At night, there had been a significant blood pressure change or drop that ended up depriving the optic nerve of adequate blood and thus adequate oxygen for a long enough period of time that the nerve partially died, and that's what this condition is.

In some cases, in the first two weeks, the situation gets a little bit worse and then it stabilizes. That's kind of how it was for me. In some cases, it gets a teeny bit better before it stabilizes. In most cases, in aggregate, the damage is permanent. And there is no treatment for it. There was a clinical trial going on when I was diagnosed that I was a part of that has already been ended because the results were so poor, they didn't even finish it. And then the capper is, the literature suggests that if this happens to you in one eye, there's a one in five chance that it will happen in the coming years in the other eye. And that's of course a huge thing because you can get through the world quite well. A lot of people do sometimes from birth with vision in just one eye.

So my left eye is still with, when I wear glasses, my left eye is still 20/20 and it does all the work now. But if it were affected to the extent that my right eye is, I would quite likely fit the definition of legally blind.

Ricky Enger: And so before this happened, was vision loss on your radar in any way at all? Like did you know someone who had lost vision? No?

Frank Bruni: No, no. I mean, you know, it's funny you worry about whatever you worry about. I don't know that I had that many specific worries, but it's hard to remember now. But I mean if I had kind of health worries, health paranoias, health nightmare scenarios, I never thought, "Oh, what if I lost my vision?" For that matter, I never thought, "Oh, what if I lost my hearing?" Those just weren't things that I thought about. I've not met many... Although I have subsequently learned that most people who are legally blind become so over the course of their lives and are not born that way. I have not met many of those people and the ones I have tended, and this is the case, to kind of lose their vision at an earlier age than mine, which when this happened, I was 52.

Nothing in my experience suggested, "Oh, I'm aging, I'm in my 50s, I better worry about my vision." Now, if I were a smarter man, I probably would have because there are a lot of things that do come on as you get older, as you all know. I mean glaucoma, macular degeneration, a lot of that stuff. But I think I was more familiar with stuff like retinitis pigmentosa and blindness agents that happen more between the age of like the late teens and the mid-30s.

Ricky Enger: And of course for people, whether they've thought about vision loss or not, there's usually not like a plan in their back pocket of, "Oh, this is what I'll do when that happens.” And so I suspect you didn't necessarily have an idea of what would happen. So what were you thinking in those very early days when you're told this is what has happened, it's not going to get better and there's a chance that the other I could be affected as well?

Frank Bruni: Well, you know, I think adrenaline is our friend. I remember sort of operating on a wave of adrenaline for several weeks. My mind was just pinging and juiced with the kind of wonder of what had happened to me. And I think that prevented any kind of emotional crash, that prevented any kind of obsessive worry about what happens next. And I think that sort of subsided. I feel like we're given all of these, I don't know if they're evolutionary tools or whatever, that work out quite well. I think that subsided gradually enough. It wasn't like there was ever a crash. That I kind of was able to ease into the realization of what my situation was. And my attitude about it actually changed over time. I remember just as a kind of metaphor and example, I've never liked listening to books, audio, never at all.

I immediately... It's just my mind wanders. I have trouble concentrating. I like the act of visual reading. And I remember fairly quickly after this happened thinking, well, you know what? I should be listening to more audiobooks because I should be listening to them instead of music when I run or when I'm on the treadmill. And now there's another reason, because it could be the case that there will be a day when that's my only way to read books. And so I remember getting an audio, whatever that ... What is it called? Audible. I remember getting an Audible subscription. I have so many unused credits, I can't tell you.

I remember downloading, I think it was Jennifer Egan's new book, which I think is it Manhattan Beach? Or I don't know. I remember downloading that. I remember downloading Sapiens by Yuval Harari. I'm saying his name wrong, I'm sure. And starting both of those and finishing neither of those because I was listening to them. But I kept on thinking I am going to train myself to do this. Because my attitude was I need to develop some new habits so it is not so jarring if the other eye goes.

And then my attitude changed entirely, and I thought, you know what? I'm actually doing the wrong thing because I love reading-reading. So what I'm going to do is do more of that and kind of ring every last drop I can from that for as long as I have it even if I lose it. Because I said to myself, you know, I will be able to make the adjustment and it will be tough. So I kind of didn't know how to cope and I felt my way through it in terms of what I should brace for and what I should just not, what I should put out of mind. And I have mostly gone the route and it may be the wrong one. I think there's no right or wrong route. I think it's different for everyone. I've mostly gone the route of putting this out of mind.

Now, it's never far from mind because right now the trial I'm in, I stick a needle in myself and pump myself full of a serum twice a week. And every day when I turn on the computer, I mean my vision is not what it once was because my right eye still tries to participate, and my brain hasn't succeeded in editing it all the way out. There are times when I go into a sort of double vision. There's times when what I'm reading almost seems to tilt diagonally. There's times when whatever the effect on my vision is, it makes me feel like I'm sort of woozy and drunk and I'm not, and I have trouble concentrating.

So I'm always aware of this. But I have found what works best for me is rather than thinking a lot about what will I do, life adjustment wise, if the left eye quits on me, I have found that I am saner and more productive and I move forward better to just put that out of mind knowing I'll deal with it if and when it comes. So I'm not really in denial, but I'm in some little baby version of that, that I think is a gift.

Ricky Enger: I think it's a very healthy approach to think of it that way because there are things that you can't change, but you know what your present is and you've decided that whatever comes, you can deal with that, you know that. And in the meantime, you do what you want to do.

Frank Bruni: There are ways in which my behavior has changed that are absolutely cognizant of this and that are meant to be kind of responsible and maximize my odds.

There's more that's unknown about NAION than that's known about it. It is believed that if you have an optic nerve structure, which I have now learned that I have, that renders you susceptible to this, if the conditions align in a certain way. Because there are many more people who would be susceptible than who end up having the stroke of the optic nerve. It is believed that sudden changes in blood pressure might be a trigger.

There is some belief among some physicians, this is very, very debated, that you might want to steer away from being at very high altitudes if you're trying to minimize the possibility of this stroke hitting the other eye. I stopped going to the Aspen Ideas Festival. Now I may go back after a couple of years, I don't know. I take a baby aspirin every single day to promote blood flow. Like I do those few things that maybe, maybe, not superstition, but 70% superstition, 30% science. I do those things that would fall within the realm of responsible and I remain cognizant that way. But in those instances where denial is helpful, I allow myself to deny.

Ricky Enger: Do you feel like vision loss has impacted your writing in any way, whether it's kind of the mechanics of how you do it and of course just the style or the things that you write about?

Frank Bruni: In regard to the former, I'm lucky as I've always been a very, very fleet writer. In fact, I often, for the Times, write analyses of political debates that are up on our website 90 minutes after the debate ends. I am slower. Luckily, I started from a baseline of fast, but I'm a slower writer because I have to circle back more frequently because I make more mistakes.

I'm very lucky. This is something, this isn't what you asked, but I'm so much more conscious of the ways in which I'm lucky here than unlucky, of the ways in which, because of various aspects of what I do and who I am, this is not impacting me the way it would someone else. People have said to me, "Oh my God, this is so horrible. You're a writer, how do you write without good vision?" Well, you know what? You actually can. You can't be a truck driver without good vision. You can't be a surgeon. I mean, I could probably list 50 careers where you'd be over without good vision, and writing is not one of them. It really isn't.

I learned to type properly when I was a teenager. In fact, I wrote a whole column about this and I know where home row is. And once my finger's run home row on the keyboard, I'm not looking at the letters. However, because we always make mistakes, it takes me longer to see the mistakes because I'm not seeing the screen as sharply. Something happens in my brain, confusion wise, where I really have to go back and read every paragraph more times than I would otherwise to catch typos. And so it has slowed me down and frustrated me in that way. Has it changed what I write about or my style? I doubt it's changed my style, but I think I write a little bit more about where I'm more interested in writing about people going through struggles, and I think maybe I have an extra measure of empathy.

Ricky Enger: Have you had the opportunity to meet other people who have low vision now that you've lost some of yours?

Frank Bruni: Yeah, I've made a point of it, not tons, but I've gotten to be very friendly with a very renowned jurist in Washington D.C. Who's on the Circuit Court there, which is one step below the Supreme Court. His name is David Tatel and he has retinitis pigmentosa and he lost his vision by the time he was about 32. And he and his wife have become friends and he has had a brilliant judicial career. And if you went into his courtroom and you knew nothing about him and you just watched for a while, you very likely would never pick up on the fact that he is profoundly, legally blind. He sees almost nothing.

If you watched really carefully and you saw him exit the courtroom, you would see him hugging the wall. And apparently something that has happened in the last couple of weeks since I last saw him, he has, at the age of mid 70s, he's actually integrated a guide dog into his life, which he has had such an amazing attitude about him. I mean he has viewed it and approached it and experienced it as this adventure, which it is. And I think that's the real answer to your question is I never before understood so fully how crucial perspective is, how crucial it is to realize that this challenge you've been visited with is a pittance compared to what most people deal with. How crucial it is to realize that everybody, if not visible to the naked eye, is going through something pretty difficult probably, and you just don't know it. When you open your eyes to that, it is enormously emotionally helpful. And I think it makes you a bigger and better person.

Ricky Enger: Is there something aside from just as you say, opening your eyes to this perspective and how everyone is going through a struggle and each of us has them, is there something that's been particularly helpful for you since you've lost your sight, whether it's just a something that you've realized or even some piece of technology or some experience that you've had that's been really helpful for you?

Frank Bruni: The impact of this on me remains, for lack of a better word, subtle enough that I'm not in the realm benefiting much from technological assistance. I mean other than the fact that I've increased the font sizes on everything I write. And there again, talk about perspective, I mean 20 years ago, I would not have been able to monkey with the look and the size of what I read and the back-lighting or front lighting or side lighting or upside down or whatever. I mean I am able, because I live at this moment in time, to manipulate the visuals of what I read or the computer aspects of what I'm writing in a way that is enormously helpful, and it's very low tech. I mean it's nothing I had to learn to do, I just had to start doing it. That wouldn't have been doable in the past. And so how lucky am I to have NAION in 2019 and not even in 1999, or God forbid, 1959. Right?

Ricky Enger: That's exactly it. I often tell people that if you have to be blind, now's the perfect time for that to happen because there are so many more opportunities and it's far far different than it was just 20 years ago.

Frank Bruni: Yeah, no, and it's funny, I mean, you and I are talking about this. Every vision challenged person talks about this and is aware of this. God bless Apple. We talk about corporations in such evil terms, and sometimes that's entirely justified, but I often love me Apple because, whether it's dictation stuff, et cetera, they've been really sensitive to this in a way that I suspect goes beyond the market reward, but I don't know.

What else has been helpful? The perspective thing I mentioned in realizing other people's struggle has really been the most helpful. But as a kind of sub point of that, I would say, I often do kind of go through my head, kind of like do a roll call of the people in my life. And I look at them from the perspective of what have they been through in the last five years? What are they going through now? And there's all sorts of stuff that I wouldn't be so conscious of if I weren't going through that exercise. Which is an exercise that I think makes me a better friend, but it also is something that kind of gives me a better awareness of my place on things and becomes protection against self-pity.

Ricky Enger: Is there one thing that when the doctor told you, "This is it. This is what has happened. You're going to have to get used to things as they are or perhaps worse than they are now." Is there something that you wish that someone had told you then that you've kind of figured out for yourself now and you just wish you could say, "Hey self, this is what I know now"?

Frank Bruni: This isn't exactly what I think you have in mind, but I wish that the initial doctor, or for that matter, other doctors had done something, which now that I've integrated many more doctors into my life. Something that wasn't said to me by the first doctor I saw, by the second doctor I saw, by the third doctor I saw. Something that wasn't ever really said to me was your challenge from this day forward is in much greater measure, psychological and emotional than it is physical. And you might want to think about whom you're going to talk to the most about this, whether you want to talk to somebody professionally. It remains shocking to me and I would call it derelict, delinquent, negligent that the medical profession doesn't, as a practice and a habit, and the doctors aren't better trained to realize and brace for and help patients through the psychological impact of illness or disability or any sort of medical shock like this.

I almost get a little angry when I think about the two visits I made to the initial doctor and the two times I left that office with her sort of shaking her head and sort of like, "Yeah, this is a really rough blow." And never was it said like, "Would you like a referral to a counselor?" Never was that brought up at all. And I think it's possible in this doctor's case that... You know, this doctor I came in as an educated person. I was a New York Times columnist, maybe she knew my name. My romantic partner at the time was a physician who was there with me, maybe she thought he's got it covered, but there were other doctors who saw me who wouldn't have necessarily made those assumptions. And she shouldn't have either.

As a kind of, to find answer to your question, I wish the doctors at the start had been more aware of that, have had more of a conversation with me about that. But I wish it almost less for myself because I can take care of myself. I'm a big boy and I'm smart about these things and I'm conscious, but I really worry for other people because there are people who really should have that said to them. There are other people who don't have as many friends. And I think, and I've talked to people, I think this is a fairly common widespread flaw in the medical profession, well beyond eye doctors, you know? And it's so obvious that I'm dumbfounded that it's not remedied.

Ricky Enger: Sadly, it's kind of a case of, "Well we can't do anything more to fix you. And so our role here is done. Good luck or not, off you go." And that's very unfortunate.

Frank Bruni: I think physicians need to be much, much more careful about the information that they're doling out because it has a real impact, and sometimes they're doing it cavalierly.

The physician in question insisted that the chance that my other eye would go was 40%, now because I've done some journalism on this now and I'm again, talk about luck, I can pick up the phone. And because I'm a journalist who's going to be writing some about this and has written some about this, I can pretty much get the most prominent neuro-ophthalmologist in the country on the phone and I can ask them questions journalistically which are valid, which I am asking for that reason, that are also the subjects of my curiosity, right? Not everybody can do it, but I now know that that 40% was a real outlier prediction, that almost everybody else is in the 15% to 20% range.

Don't throw that number out if it's an outlying figure because that's a much different emotional impact than 20%, when you're talking about the stakes being legal blindness. So I have a lot of thoughts about the medical profession and the way in which physicians, without bad intentions, can complicate their patient's lives utterly needlessly.

Ricky Enger: So you're actually writing, or perhaps you're done writing a book on your experience thus far. What can you say about that? Do we have a publish date yet?

Frank Bruni: No, it’s not done. It's due the middle of next year and my guess is that means it'll be out probably in the middle of 2021. I think they'd like the next presidential election to occur and the next president to be inaugurated. I think they want to get beyond all that. And I've had to juggle that work. I'm still working full time at the Times and still on CNN four or five times a week. So it hasn't been ... I have not been able to turn my full attention to the book. But the book is basically about a lot of the things we've talked about today. It's about aging, and limits, and perspective, and how you adapt to sudden limits in your life that kind of make you aware that this is the beginning of a long process of more limits when you age, how you hold onto your perspective ways in which... Sorry, my dog is barking.

I got a dog during all of this. I wanted a dog. Again, I hadn't had one in many, many, many years and I asked myself why I pressed the button now. Why would you press the button when your vision is in peril? Well, first of all, I don't want to live as if that one in five chance is going to happen. Number two, I realized and a kind of... This wasn't hugely consciously thought out, but I did want to do something that took me outside myself. I think it's really easy to become even more self-obsessed than you are already when you're going through something like this. But that bark you just heard I think is part of a story you and I are talking about.

Ricky Enger: And she sounds like a really neat dog. I forget what breed she is, she's a mix, I remember that much.

Frank Bruni: She's a mix. I didn't know what breed she was when I got her. She was my little brother's dog. She came from a Border Collie rescue group and she looked like, and was described as, predominantly Border Collie, but I'm one of those nerds who had her DNA done, and it turns out she's actually a mix of Australian Shepherd and Siberian Husky.

Ricky Enger: Awesome. I want to thank you so much for joining us and sharing your story. We will all certainly look forward to reading the book when it's out. In the meantime, if people want to find out what's going on in your world, what can they do to kind of follow what's happening with you?

Frank Bruni: If you go to the Times website and hit Opinion and then Columnists, you can find your way to everything I've written recently. And if you go into one of those columns, you can find a link that shows you, that invites you to and shows you how to sign up for my free weekly newsletter. And every Wednesday at noon, a newsletter that I write, that's a kind of much more improvisational personal take on the news and that also includes updates about my life and my struggle with NAION. That comes out every... Which is once you sign up for it, it just zooms into your inbox every Wednesday at noon, no charge.

That again is something you can access if you go to the Times website, go to the Opinion section, go to Columnists, go to me, click open one of my column columns and several places in that column. It invites you to sign up for my weekly newsletter, which would be great if you did.

Ricky Enger: Fantastic. We will also have a link in the show notes to, I believe you're on Twitter as well, right?

Frank Bruni: I am on Twitter. It's @FrankBruni and I'm on Facebook, which is @FrankBruniNYT.

Ricky Enger: Thank you again for taking a little time with us today. I appreciate it very much.

Frank Bruni: Thank you very much. I appreciate your time.

Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at podcast@hadley.edu. That's P-O-D-C-A-S-T@Hadley.edu or leave us a message at (847) 784-2870. Thanks for listening.