Yale student and aspiring actress Nicole Kear learned during a routine eye exam at age 19 that she had an incurable progressive eye disease (retinitis pigmentosa) and would be blind by the time she was 30. There was no treatment available. "This was the real deal," Kear writes, "an old-school affliction where you get it, you're f*cked, case closed."
Naturally, she decided to attend circus school. When you learn that your vision is seriously impaired and getting worse, take to the trapeze! What could possibly go wrong?
This level of denial, combined with a hearty "F*ck You!" to fate, is how Kear operates. She shares her story in her new memoir, Now I See You.
Post-diagnosis, Kear realized that her field of vision had been narrowing her entire life. What she'd assumed was ordinary klutziness was actually a result of the disease that had been "nibbling holes in [her] vision like a mouse gnawing through a slice of cheddar." She had always tripped and face-planted more than her peers. But while it was (excuse the expression) eye-opening to learn the reason for her continual clumsiness, that reason was just too awful to contemplate. So Kear chose not to, launching, instead into a pursuit of as vibrant and colorful a life as possible before the arrival of what she calls "Lights Out."
After circus school, there was world travel, and a significant amount of reckless behavior, from smoking and drinking and riding around on motorcycles to some rather risky sexual escapades.
Nor did Kear's large, close-knit Italian-American family do much to help her face up to her future and figure out how to live with her disability. When they learned of her diagnosis, Kear's folks got weepy and fell apart. The message? Keep the problem under wraps. Kear did what she could to comply.
Crying and falling apart are routine behavior for Kear as well. She cries or melts down on almost every page. (As the book begins, even before her dire diagnosis, she's sobbing over the boyfriend who has just dumped her because she's over-the-top needy.) She freaks out and weeps whenever she hits an obstacle. And, as her vision fades, she hits plenty of them. Especially since, inexplicably, she insists on making everything much worse for herself by keeping her disability a secret.
Running, she slams into a toddler at the playground. When his father goes ballistic, Kear, rather than explaining that, near-blind, she simply didn't see the child, silently endures his angry tirade, feeling furious and put-upon.
Arriving at a friend's birthday party, the bar where it is taking place is so dark that Kear can't figure out where her friends have gathered. Although she's longing to stay, rather than asking for help, she blunders around knocking into people, then returns home, devastated.
Kear feels that to let people know that she can't see would be "humiliating." Over and over, tripping over toddlers, driving blind, losing her kids at the playground, stepping into dog poop, careening into people in dark bars and causing them to spill their drinks, instead of explaining, and thus allowing people to be sympathetic and understanding, she stays mum.
She encourages people to think that she's ditzy or even drunk rather than disclosing that she can't see.
Does this make Kear exasperating to read about? You bet. Luckily, Kear, a gifted comic writer, is as amusing as she is annoying. Even as you wish she'd get a clue and start to cope, you're laughing at her terrific stories, her sharp and funny take on things, and her snappy one-liners. (Her description of going into labor at a family Thanksgiving gathering is a classic.)
She's a hot mess. But she's a smart, funny, engaging hot mess. And God knows there's plenty of precedent for humor based upon a grown woman making a fool of herself, then bawling like an infant. (I Love Lucy, anyone?)
While Kear doesn't make it as an actress, she does find success as a freelance writer. She also finds Mr. Right, gets married and has two kids. And while she downplays these accomplishments, choosing instead to mine her failures and foibles for humor, you have to respect what she is able to accomplish, given not only her illness, but her ability to sabotage herself.
As someone who has had lousy vision since childhood -- without glasses, I walk into walls and knock things off tables -- I felt for Kear. And while I'm quick to call her out for being a self-sabotaging crybaby, the reality is that she was blindsided by a devastating diagnosis at a young age. At 19, although I couldn't see past the end of my nose without my specs, I knew that once I put them on, everything would be OK.
Kear's immaturity will occasionally make you want to roll your own eyes, but her honesty and wit will keep you turning the pages. And if, like me, you're AARP-aged and dreading cataract surgery, you REALLY need to read this book.
Kear's plight is absolutely guaranteed to put that little problem in perspective.
(This review first appeared on Womens Voices For Change.)