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I’m a Mom of Three, and I’m Going Blind

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I’m a pretty permissive parent, the kind heavily judged by my own parents and most of their generation for being a “softie.” I do, however, take a hard, unyielding stand on a few issues. Not all ten of the Commandments, but, you know, the big ones — plus a few others I tacked on: no teasing, no name-calling, no physical assaults. And no lying.

Time and time again, I’ve told my kids, ages 9, 7, and 2, that together we can find a solution to any problem, as long as they tell me the truth. Late is better than never, but honesty from the get-go is really what I expect.

But I’ve been a hypocrite, because for years, I’ve lied.

Not to them directly, but in front of them, to others — all of them little white lies that, when you put them together, don’t look so little anymore. The lies have been necessary, I’ve told myself, in order to protect a secret. A big, ridiculous secret I’ve been keeping about myself since before I had children.

I’m blind.

I know, it sounds outrageous. There’s no way a person could be blind without other people noticing; it’s sort of like saying I’ve secretly been a conjoined twin.

But contrary to popular belief, blindness isn’t always a black and white kind of thing. Right now, I’m legally blind, creeping a little closer to flat-out-blind every day. I don’t wear sunglasses all the time and I don’t have a seeing-eye dog, though my vision has deteriorated to the point where a mobility cane would be helpful. Of course, the cane would be a pretty conspicuous clue as to my secret — kind of a deal-breaker, really — so I’ve managed without it.

Eighteen years ago, the summer after sophomore year in college, I discovered I had a degenerative retinal disease called retinitis pigmentosa. The disease has been gradually devouring my retinal cells like a kid laying waste to his Halloween candy, gobbling up my nighttime and peripheral vision first and then moving on to my central acuity. It treated me to cataracts at the ripe old age of 30 and has brought on color blindness and tunnel vision as well. So, sure, I see the world the way you would — if you were looking through peepholes smeared with Vaseline.

It’s super inconvenient, especially as a mother to three young kids. But what’s even more inconvenient than my blindness is trying to hide it. Over the years, as I’ve lost more and more vision, it’s taken more and more time and energy to conceal this fact, and as my family has grown from one child to two and then three, time and energy is exactly what I don’t have.

In the beginning, my vision loss wasn’t a lie, just a personal detail I kept close to the vest. I was fearful that if people found out, I’d be pitied or bombarded with pep talks, or defined by my looming tragedy. Since the disease progressed slowly, my vision was unaffected for a long time, and I felt like telling people I had a degenerative eye disease was like telling them how old I was when I first got my period (13, if you’re wondering); it was a fact, sure, but of little interest and relevance.

Of course, as time passed and my little blind spots grew, the fact of my vision loss became more relevant. I had to make up stories to cover for it: I maintained that I couldn’t read the form in the doctor’s office because I forgot my glasses (really, my contacts were securely in place). I said I couldn’t drive because I was a New Yorker and we don’t need to drive (in truth, I couldn’t pass the DMV vision test).

I didn’t actively choose to keep my blindness secret; I just didn’t tell the truth about it, and the lie grew all on its own.

It’s sort of like how you don’t choose to have your kids sleep in bed with you; it just happens one night when the kid has a nightmare, and she’s crying and you’re exhausted and you figure, “What’s the harm?” and then five years later, you have a bed full of kids kicking you in the face and the ribs and the knees and you wonder, “How in the hell did this happen?”

To be clear, I never lied to my children about my vision. Very early on, I made the decision to be completely honest with them about everything — sex, death, and yes, my vision, too. From an early age, the kids knew that my eyes were “bad” and getting a little worse all the time. But just because I wasn’t lying directly to them didn’t make my fabrications okay. I realized that if I didn’t grow a pair and start being honest about my blindness, my kids would learn by example to cover up parts of themselves they felt were unseemly or imperfect. This was a wake-up call I could not ignore.

I started small, confessing my secret over coffee with a former roommate, who thought at first that I was joking. When I assured her it was ridiculous, but also true, she fell silent a minute and then exclaimed:

“So THAT’S why you broke so many of our glasses! I thought you were just really, really clumsy!”

And just like that, within half a minute, all the awkwardness dissolved. After talking about my vision for a few minutes, we moved on to more pressing subjects, like how to keep our toddlers from crapping on the floor.

The more times I have this conversation, the less awkward it gets. The thing I’ve been most amazed by is how telling the truth about my vision loss has strengthened my relationships. It’s brought me closer to friends and opened the door for them to be honest about their own secrets.

But the best part of coming clean has been the assurance that I am doing right by my kids. Being a hypocrite feels really, really lousy. It’s a mild but constant discomfort that you can get accustomed to but which never goes away, like wearing too-tight shoes.  It’s an enormous relief to be liberated from that feeling, so much so that it makes me wish I was just honest from the very start. But, as I tell my kids, we’re only human. Better late than never.

image source: nicole c. kear

Nicole’s memoir Now I See You is available now from St. Martin’s Press. You can order it online at nicolekear.com.

Article Posted 4 years Ago
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