Nicole Kear was 19 years old when she learned she was slowly going blind. Sitting in a doctor’s office in her native Manhattan, on break after her sophomore year at Yale, she was diagnosed with retinitis pigmentosa, a disease that would wipe out her vision over time. Given just a decade or so of sight left, she decided to carpe diem, while keeping her disease a secret. She tore through boyfriends, traveled the world, signed up for circus school, played bartender, and moved to Los Angeles to become an actress.
Meanwhile, the disease quietly took its course, first attacking her night vision, then her peripheral vision, and finally her central vision — clouding it over with cataracts, erasing depth perception and bringing on color blindness. Eventually, she married the love of her life, returned to New York and her close Italian family, settled down in Brooklyn, and started having children. And in her new role as mom she decided to surrender her secret, ‘fess up to her kids and to herself, and start preparing for — and making peace with — the inevitable.
I recently caught up with Nicole, a genuinely cheerful, funny and wildly outgoing mother of three over coffee to discuss motherhood (her children are 2, 7, and 9 years old) and her new memoir Now I See You (due out this June by St. Martin’s Press), which chronicles her journey in both side-splitting and tear-inducing detail and reveals her deepest, darkest, secrets.
SARAH HUTTER: For a book that tackles such a dark subject, it’s surprisingly funny. Like, uproariously funny. Was that your goal in writing it — to make people laugh?
NICOLE KEAR: Yes. In fact, about 9 years ago when my son was a baby, I read a book by another author named Ryan Knighton on a similar subject, his coping with vision loss. And it was a very funny book about the same very dark subject. It was a revelatory moment for me, because it gave me permission to be funny — which is really the only way I knew how to tell the story. In fact, as I revised my book I had to take [some] funny out. It’s very easy for me to be funny. What’s harder is for me to be honest and real and serious and heartfelt.
SH: Was it therapeutic to write?
NK: The whole process was very therapeutic — writing about it and then putting it out in the world. And it was something that I couldn’t do up until recently.
SH: What was the turning point?
NK: About four years ago I started getting trained by the Commission for the Blind. They taught me how to use a mobility cane, among other things. They gave me confidence and made me feel much more relaxed about the future. But it was a process. Before doing that I couldn’t have written the book because I was in such a place of not dealing with it.
SH: After your diagnosis you went through a kind of wild and reckless phase. How much of that do you think was youth and how much was a reaction to your diagnosis?
NK: It was probably 50/50. I was halfway through college and really on the cusp of adulthood. It was an interesting time to get a life changing diagnosis because I kind of could choose who I was going to become. I think that joie de vivre and reckless abandon was probably just waiting under the surface. The diagnosis was the catalyst that kind of activated it.
SH: What changed after that? You eventually settled down and had kids.
NK: Yes, I settled down, but it was the same carpe diem kind of motivation. When I was in my 20s it was all about sex and circus school. Then it was all about getting married and having kids. Through it all, the common thread was: I don’t have time to waste.
SH: What were your fears and concerns about having kids?
NK: One of the things I learned was that while babies seem terrifying, they actually aren’t. They stay where you put them. The ones who are terrifying are toddlers — especially when you have tunnel vision. They are always running, they have no impulse control, they have no survival instincts. And you have to watch them every millisecond. That was my coping strategy: I simply never took my eyes off them.
SH: So the toddler years were the most challenging?
NK: Yes, especially with my middle child, because she was a runner. She’d just take off running and never look back, and it led to some terrifying moments in the playground because I couldn’t see her unless she was right in front of me. I always found her within a minute or two — but it didn’t feel like a minute. It felt like an eternity, and I’m sure it took years off my life. I tried putting her in a toddler harness — those monkey backpacks with a leash attached — and putting jangly bell anklets on her, and I kept her in a stroller way past the point she should have been, just because I could restrain here there. Eventually, she developed a bit of impulse control. By that point, of course, I had another baby.
SH: You describe in the book how much you agonized over telling your older child about your eye disease. But in the end it wasn’t a big deal.
NK: Yeah, it’s funny…I had always been very secretive and concealed the facts about my vision loss and eye disease to basically everyone. But one thing that was very important to me was to be honest with my kids. I knew that if I just shared it with them from the get-go it wouldn’t be a big deal. So when my son was 20 months old, I mustered up my courage and said, “Mommy has bad eyes.” Then I gave him a few details about what that meant — like, I can’t see in the dark, I can only see what’s in front of me. And that was totally it. I think it was something he always knew and to this day it’s never struck him as weighty or sad or anxiety-provoking.
SH: What about your older daughter?
NK: It’s the same. The other day I took out my white mobility cane, which I haven’t actually used yet, and my daughter who’s 7 asked about it. There’s a little girl in her school who uses one and I was able to use that as a point of reference. I said, “This is a cane. I might need it one day, just like that girl in your school.” And it was totally inconsequential. She just thought it was an interesting fact. I actually heard her repeating it to her friend a couple of days later. “Oh my mom has a white cane. She might need it one day if she’s blind.” She took it in stride.
SH: You hate telling people about your disease because it’s such a conversation-stopper. Did you write this book as a coming out?
NK: I totally did. I thought it would be like killing two birds with one stone — I get to write this book that I’ve always wanted to write, which would provide the added benefit of doing the work of telling everyone the secret that I didn’t want to tell. What’s funny about it is that there was no way to tell people about the book I was writing without telling them what it was about. That’s the question people always ask. For months I lied and told people it was about parenting. Or I would say something coy like, “It’s my secret — you’ll just have to read it,” because I still didn’t want to reveal it. Then eventually my self-interest overrode my desire to keep it secret. No one’s going to buy my book it if they don’t know what it’s about.
SH: It’s been more than 10 years now since your diagnosis. What’s the prognosis?
NK: It’s actually been 18 years since my diagnosis, which means that I’ve almost lived as long with my eye disease as I have without it. And I think my vision has held up remarkably well. There’s still no treatment for the disease, but there is all this data that suggests that high doses of vitamins may be helpful in keeping it from progressing. So I started this vitamin regimen and the hope is to slow the progress and preserve whatever vision I have.
And the research for treatment and a cure is moving so quickly now. They just developed a prosthetic retina, which actually restored sight to fully blind people. It’s a crude thing right now and it just gives people some light perception. But the specialist I see thinks that very quickly the technology will improve. Gene therapy is tremendously promising too.
All in all, it’s kind of the best time ever to be blind because of technology. It’s unthinkable to me how people managed even 20 or 30 years ago. Now I have Siri on my iPhone, which is not a special accessibility feature. It’s just something everybody has. Siri can read for me, make appointments for me, remind me of things.
SH: And then there’s the cane, which figures prominently in your book. It hasn’t changed in years.
NK: And then there’s the cane — it’s a stick. It folds up now, so there’s that. Thank God. It folds up into four parts. I deplore the idea of using it. One day I’m sure I will, when things get dire enough. So far I do decently without it. I feel like when I do need it, I’ll have to pimp it up. I’ll have to get out my BeDazzler and put rhinestones on it.
SH: How are you living your life now?
NK: We all want to savor every moment with our kids. But it’s very difficult. I don’t feel like I succeed most of the time. But there are moments when I can stop and say, “Oh my God. How amazing is this?!” In our family it’s never the quiet moments. It’s always the uproarious, crazy, balls-to-the-wall moments when everyone is singing, and dancing and it’s colorful. I try to relish those.
My vision loss is just a fact of life. And I think it’s been really good for my kids to see that about me and to know they too have things that impair and limit them — everyone does. Sometimes you can fix it and other times you need to accept it.
SH: In the book you describe a moment when a new friend, someone who has the same eye disease as you, says she can tell that you’re a good mother. And it’s something you realize you couldn’t admit to yourself. Does that conversation still stay with you?
NK: Yes. I think I remember each and every time someone has told me that I’m a good mother. It is something that that all of us are so desperate to hear because most of the time we think we’re failing miserably. There’s so little you have control over and, for me, it’s easy to fixate on the things you get wrong. I think particularly with my added impediment that I’ve had an inferiority complex about it. So when my new friend told me that, knowing the whole story and what I was up against, it was tremendously affecting to me. And at the time, it made me feel like maybe I could have a third child — and I eventually did. So be careful what you tell me and how much you encourage me, or my husband will kill you!
LEARN MORE ABOUT NICOLE BY VISITING HER WEBSITE