Nicole Carr (5:14)
So I'm standing by the Gowanus Canal and I'm wearing a disguise. I have on this long brown coat with the hood pulled up and a black hat that says Brooklyn on the front. And I have these big Jackie O sunglasses. It's overcast out, so with the sunglasses on, I can't really see very much. And I tell this to Esperanza. She's standing next to me. I'm like, it's kind of great that I can't see with these on, right? It makes me seem more blind. She smiles, but it's this like, sad Little smile. And clearly she thinks I'm crazy. That's because I am blind. Even though I don't look it. I'm legally blind now and just getting a little more every day. That's the whole reason Esperanza is here. She's going to teach me how to use a mobility cane. When she first told me that we had to do the cane training in public, I totally freaked out. I was like, people are going to see me, and then it might be people I know, and then they're going to ask why I'm holding a blind man cane, and I'm going to have to make up, like, a totally cockamamie excuse. No, I'm not doing it. But here we are. We're standing by the canal, and Esperanza is waiting, and I am not ready. I do not want to take out this cane. I have this very distinct feeling that as soon as I do, terrible things will happen. I'm going to lose the rest of my vision, and then I'm going to be divorced and unemployed, and they're going to take my kids away. And then before you know it, I'm going to be living under the Brooklyn Bridge in a cardboard box, smoking crack. I'm panicking. My heart's beating like crazy, and my mind is scrambling. It's trying to find a way out. But I know that I can't outrun this moment anymore. My blindness has caught up with me. When I was 19, I spent the weekend in Montauk with my boyfriend, and we'd cuddle up at night and he'd point out, like, the Big Dipper and Ursa Major. And it was really weird because I couldn't sing any of them, so it wasn't a big deal. But it reminded me of this time when I was a kid and my father had dragged us all to Staten island to this beach to see Halley's comet. He was so excited about it. He kept calling it, literally, a once in a lifetime opportunity. So he had even bought a telescope, which was, like, so extravagant. And my mother still complains about it 20 years later. So he got the telescope. It's the middle of the night, it's freezing. We're on the beach, and he sees it and he calls us over. But when I get up to the lens, I don't see anything. So when I didn't see the stars in Montauk a whole decade later, it occurs to me that I should get my eyes checked. So that's how I ended up in the retinal specialist's office, I was diagnosed with degenerative retinal disease. It's called retinitis pigmentosa. The doctor said first I'd lose my nighttime vision and my peripheral vision and then eventually my central vision. Although he had no idea how long that would take, he was hopeful I had another 10, 15 years of decent vision left. A few weeks after the diagnosis, I walked into my father's study and I found him crying. So I had never seen my father cry before, not even when his parents died or his brother. So when I found him hunched over his desk with his glasses off, wiping his eyes, it felt very end of days. I mean, I'd known the diagnosis was not great, but. But seeing him cry, I realized how bad it was. It really seemed insurmountable. I hated the idea that everyone would think of me as this tragic case. I was young. I was hot. I was about to have an Ivy League diploma. I mean, the world was my fucking oyster. So I decided I would just not tell people about it. I mean, I didn't look impaired, so, you know, they wouldn't know unless I told them. And I decided that if my eyes were getting handed a death sentence, I would just make them a bucket list. So I traveled and I joined circus school, and I moved to Hollywood to be a movie star. Oh, I started wearing Russian red lipstick and stilettos everywhere. It was amazing. I felt like I had changed from a caterpillar into a butterfly. Admittedly, I was a very slutty butterfly, but still, I felt vital and vibrant. Now, because I wasn't telling anyone about my eye disease, I had to make up little stories to cover for all the accidents that I kept having. So when I, you know, fell down the stairs at the cast party, that was because the champagne. And when I couldn't find the bathroom in the dark bar, that was because I had one too many cosmos. So my MO Was basically, when all else fails, plead intoxication. One night I went to visit this aloof hipster paramour that I had in Hell's Kitchen. And afterwards, he fell asleep. But I was restless, so I decided to have a smoke on his fire escape. So I get my Marlboro Lights and I open the window and I sling my leg out, you know, expecting it to meet the metal of the fire escape, but it doesn't. It just keeps going farther and farther and farther. And then suddenly I realize something's off. And I jerk my body back in really quick before the balance tips. The fire escape was out the other window. So I'm standing There. And I'm thinking, just a few more inches and I would be lying on 53rd street, dead or broken in some disgusting way. But that isn't even what bothers me most. What bothers me most is the fact that everyone would think I killed myself. Because that's the only reasonable explanation here. It's not like people fall out of fourth floor windows even when they drink one too many cosmos. No, everyone would think I'd killed myself. Even the people that knew about my vision loss. And I realized I wasn't in control of my story. And that made me really furious and really scared. And absolutely nothing changed at all, really. Sometimes it takes more than a near death experience to stop a lie from growing. Not too long after that mishap, I fell in love and I got married and I got pregnant. When I had my son, I was 27. And I had developed cataracts in both eyes. So they make everything really blurry. So I can't really read regular print anymore. I lose a lot of depth perception and I go colorblind and my tunnel vision just keeps shrinking. So that even something simple like a handshake is really hard. Because if it isn't, like directly in front of my face, it just falls into this gaping abyss of not seeing Still. I didn't tell people it was weird, but I just figured that I would reach a breaking point, you know, like a moment at which my blindness would be so obvious that I couldn't cover it up anymore. So I had my daughter two years after I had my son. And I thought, this is it. But it wasn't. And then my vision got so bad, I couldn't see labels at the supermarket or, you know, sizes on clothing or forms at the doctor's office. And I thought, this is it. But it wasn't. I had gotten so good at compensating and so good at lying about it that I was able to just keep pushing that moment away. So my daughter, when she was a toddler, was the kind of kid that as soon as her feet touched the ground, she just took off sprinting and never looked back. She was a blind mother's worst fucking nightmare. I would take her to the playground, and if I looked away for like a millisecond, she would just disappear. The problem was there was no way for me to tell if it was, like an actual emergency. So she could be running through the gate right into traffic, or she could just be sitting down at my feet. One day we're at the playground and I look down to check my Watch. And then I look up, and she's gone. So instantly, I'm in, like, a deranged panic. And I'm panting and I'm dizzy and I'm sweating, and I'm calling her name in, like, this shrill, hysterical voice. And I'm cursing myself for being such an idiot as to look away for a second. And I'm spinning in circles because I'm trying to find her, but I'm looking through pinholes, so it's really hard. And then I hear Mommy. And I look to the side, and she's there. She's right there. She's sitting on the bench, eating goldfish. She's probably been there the whole time. And the relief is so sudden and intense. I think for a second I might actually throw up, but I don't. And I sit down and I pull her onto my lap. And I'm shaking. And I think I need a plan so that this doesn't happen again. And for the first time, I realize I need help. Because this stupid, relentless disease will not go away, even if I ignore it and if I deny it. And I find, for the first time, something that is more terrifying than facing my blindness. And it's much more terrifying, and it's what just happened at the playground. So I called the New York State Commission for the Blind, and they sent over Esperanza to teach me how to use the mobility cane. I told her to meet me by the Gowanus because that's the most deserted area I can think of. And then, just to be safe, I also wear the disguise. I mean, I'm totally going to change the error of my ways, but I have to do it one little, tiny error at a time. So we're at the canal, and Esperanza's waiting, and it's go time. And every fiber in me is screaming, no, don't do it. Drop the cane. Run away. But I think about my son, and I think about my daughter. And I want to be a person they can respect, and I want to be a mother that shows them they can face their problems instead of running away from them. And I know the first step is just picking up the cane. So I take a deep breath, and I take off the rubber band that keeps it folded into this little, neat, compact bundle. And the cane, like, unfurls itself. All the pieces just snap into place. It's like a magic trick. It's so compliant. It makes me feel like it's gonna make it really easy on me. Like it's been waiting for me to do this. I take the handle in my hand and I point the tip towards the ground. I'm a blind woman now, and it's not pretty or glamorous or exciting, but it's what I am. And it feels kind of amazing to admit it. Thanks.