Buying your first piece of IKEA furniture. Backpacking around Europe. One-night stands. Splurging on dinner Friday night and spending the rest of the week eating ramen. These are just a few of the things most of us expect of our 20s.
Something that isn’t on anyone’s list? Slowing going blind from a degenerative eye disease.
It wasn’t on Nicole Kear’s list, either. And the Yale and Columbia graduate intended to live her life like it wasn’t. She moved to Los Angeles to pursue an acting career, fell in love, got married and even attended clown school. Yet through it all, Kear knew a degenerative eye disease she had been diagnosed with at 19 was slowing taking her vision away. She was told she had one good decade before she would be entirely blind. Her family and husband knew about the disease (retinitis pigmentosa), but Kear was embarrassed and hardly told any friends — she had lots of excuses for why her eye makeup looked messy or she wouldn’t drive at night. However, Kear and her husband settled into new parenthood, and she had to come to terms with the realities of her disabilities, including learning how to walk with a cane.
I read Nicole Kear’s funny, fascinating memoir Now I See You in almost one sitting and came away from it thinking, I could be friends with this person. She’s smart, spunky, and makes it easy to put yourself in her (unfortunately, no longer high-heeled) shoes. I gave her a call at home in Brooklyn to chat about blindness, how she managed to write a book with three young kids, and giving strangers the benefit of the doubt.
What made you decide to write a memoir about going blind?
I was writing freelance for magazines in the parenting sector and I wrote another memoir proposal, for a different memoir which was maybe about five years ago when my kids were really young. It was a very funny memoir about parenting, like a momoir. It was essentially like my book now except, only funny, and with all of the gravitas parts related to my eye disease cut out. That’s because I really wasn’t at all ready yet to grapple with the whole thing of my eye disease. The emotional aspect of it for myself and then also, the “coming out” aspect for people like me and my community, and the world at large. And that memoir, while very funny did not sell — unsurprisingly — because it was really funny but it had nothing substantial about it. And also, I was really hiding this big part of myself.
So, to be totally honest with you, how I came to write the book was thinking about that memoir and wondering how I could revive it to make it kind of interesting, and I spent a whole weekend thinking of various angles, like ridiculous things, and my husband turned to me and said “You could write about your eyes.” Like, duh! And I thought, Oh my God, that’s entirely what it was. So I began to conceive [a memoir about losing my eyesight] and really, once he said that, it was like an aha! moment where I realized that for many, many, many years, that’s really what I had wanted to do but I just wasn’t in a place emotionally where I could handle it.
You’re so dedicated to being a good parent, yet you confess so much in the book about how your denial of your disability put your children at risk. Once you wrote the first draft, did you end up adding more detail or did you end up taking away detail? I’ve read other memoirs, especially ones written by women, and worried about how the author is going to be treated because of how honestly they’ve written about their flaws. You and I both know, because we write on the internet, that people can be nasty and judgmental and horrible.
I had to go through so many drafts with so many different things in mind. In terms of the specter of the very judgey, anonymous commenter on the internet — totally! It’s something that I considered after I had the first draft and I was revising and I still am worried, I’ll be honest! I’ve written for Salon and Babble and various places, and people are horribly nasty and it’s really hard for it not to affect you, so I was very concerned about the perception of other people. But ultimately, I really felt like if I was honest and I told the truth, let people think what they think.
The tough part about writing an essay or a post is you only have, you know, 500 or 800 words and it’s really hard to communicate the nuance in that short of a time. But having a whole book gives you this amazing opportunity to relay, or at least attempt to relay, that kind of nuance. So I felt like I really wanted to show the ways in which I’m a really great mother, and then also the flaws and the ways in which I came up short. And I feel like it’s crucial for my book to do that because I feel like all us who are parents feel that way. We all come up short and it’s kind of important and really liberating to admit that and confess it. And then everyone can sort of feel a little bit better.
To be honest, I didn’t know anything about blindness and all the ways it impacts a person’s daily life. So reading your story has made me reconsider all the times that I’ve looked at people that were doing something that I thought was strange — like you write about it at the very end of the book when you tell somebody about your eye disease and she was, like, “oh, that’s why you don’t shake hands!”
I’m really glad that you said that because I, like you, had the same idea. I was shocked to discover that there was a spectrum of blindness. I had really thought you’re blind or you’re not, and it was surprising to find that you could be at all sorts of places in between . Other people who are visually impaired or to some extent,blind often tell me nobody knows that you can kind of blind or just legally blind or the official term is “partially sighted” — which is kind of vague — but that is not something people understand. So it’s hard for a lot of people who have some vision, because people want to put you in one category. It’s like “oh, you’re not blind, so you can see! Then why did you do ___?” So it’s the sort of thing that bears explanation.
What do you want readers to know about blind people?
Everybody’s situation is really different. It’s hard to lump even blind people into one category. There’s a lot of nuance in there: there are people who don’t have any central vision and only see out of the corner of their eye [and others who] have only peripheral vision. There’s like five thousand different ways to be visually impaired and for every way, there’s a story.
So, in a broader sense too, what I’d like people to know about disability — or just people in general — is that you may not be seeing the whole picture, no pun intended. This is something that I try to relay to my children because it’s something that I feel like has enriched [my life]. My experience with losing my vision has really taught me this, in a very visceral sense. I know that people dismiss me or things that I do, just making assumptions without knowing. Largely, it’s been my fault because I haven’t been transparent [about my disability]. And sometimes it’s just no one’s fault, it’s just a fact of life. But as I move through New York City, I try to remember that I may not know the whole story. People do stuff that seems odd or stupid or incompetent or rude and I try to remind myself before I judge them or jump to a conclusion. From my own experience, I know that there can be all sorts of invisible factors that I don’t see. I try to give people the benefit of the doubt and I felt like it’s an important thing to keep in mind.
How the hell did you manage to write a memoir when you have three kids?
I sold the book on a proposal, so I sold it having only written a little part of it. Then I had to write the book right after I had a baby. I had my third baby, and two weeks before I had her — like hugely pregnant — the book deal went through. So I wrote the entire book really in her first year. It’s so interesting because after I had my first child, I couldn’t do anything for six months. Like, going to the corner to buy milk was like a mammoth achievement and I was completely unable to do normal things. And then you have another kid and it’s like, you know, you take it in stride. By the time I had my third, she was a newborn; I had two other kids, I wrote the book, we sold and bought a house, and that was, like, in a period of months.
So it’s all a compromise. There are sacrifices. If you walked into my house right now you would run screaming. It’s filthy. I don’t clean. I don’t cook. My kids watch TV. There’s a lot of shortcuts. There’s a lot of things I’m giving up in order to get the time to write the book. but it’s kind of a matter of priorities. [Writing] was really important to me, so I figured they could watch a little more TV or eat frozen pizza.
How are you able to write on a computer with your vision so impaired?
I have a regular MacBook Pro! It’s just the same one everyone has … People who don’t need it wouldn’t know, but all you have to do is press three buttons and you can blow up the whole screen to as big as you want. They’re not special features, it’s just something in the Mac that comes default.
So you just type on a regular MacBook Pro with the screen blown up?
Yeah, it’s really big! It’s funny because sometimes I work in coffee shops, and when I go, the text on my screen is so huge. So, it’s so embarrassing because I feel like when there are people working behind me and I’m checking my email, it’s like my emails are screaming out and there’s no privacy. If I’m writing to my husband people across the room can probably see! It’s like a banner. But that’s the price you pay!
Do you walk with a cane regularly now?
I do not. I hope this is communicated [at the end of the book], the sense of me … still actively trying to come to terms [with my blindness]. So I got trained on the cane, I have it, [but] I don’t use it. The main situations where I would need it are nighttime and crowded places, like Times Square for instance. Perfect place to have a cane. I probably should use it at some point. Because I have three young children, to tell you the truth, I don’t find myself out at night all that much! The great part of New York is that it is so well-lit. Even in the evening the streets are blazing with light, so I’ve gotten really good at sticking to the streets that are well-lit. It’s inevitable, I’m going to have to use it eventually. But I’m still sort of scraping by without it.
One thing that I’m really happy about with readers beginning to respond now on Amazon and Twitter and stuff, I’m so happy that people have understood the humor of [my story]. For a long time what put me off writing a book was that I was, like, “How am I going to write a book about this subject?” which is a very dark — no pun intended — subject. Very gloomy. Like you tell people you wrote a book about going blind and they’re like “oh, geez. I don’t want to read that sad book!” But then I have to be, like, “No, it’s very funny!”
So it was kind of a revelatory moment for me to realize I could write about this dark material in a way that was very light. I’m delighted [the humor is] something that’s come across and that people are enjoying that, because that’s the kind of book that I really like to read, one with the levity mixed in with the gravity.
Now I See You: A Memoir by Nicole Kear is available now.