IT HAPPENED TO ME: I’ve Been Going Blind Since I Was 19 -- In Secret

I had plenty of time to prepare for the blindness that would creep in slowly during my 20s, first eradicating my nighttime and peripheral vision and eventually, in my 30s, my central vision.
Publish date:
July 31, 2014
healthy, disability, blindness

There is no good time to find out you’re going blind. That’s my opinion, at least. The doctor who diagnosed me at 19 with retinitis pigmentosa, an incurable eye disease, disagreed.

In a way, it was a great time to find out I was losing my sight, he observed.

I was still making decisions about my adult life -– career, partner, place of residence -– and now I could factor this information into those decisions. Plus, I had plenty of time to prepare for the blindness that would creep in slowly during my 20s, first eradicating my nighttime and peripheral vision and eventually, in my 30s, my central vision too.

You are a really crappy doctor, I thought, but an even crappier spin-doctor.

After some reflection, though, I decided he was right; I was lucky. Not because I had plenty of time to learn Braille and rehearse for Blind Life, but because I had plenty of time to do just the opposite -– to throw myself into Sighted Life with a full-throttle, balls-to-the-wall zeal. I began immediately to stuff as much beauty and adventure into the limited time I had left to see; I got serious about checking stuff off my Visual Bucket List.

Sunset over Paris? Check.

View from the flying trapeze? Check.

Chiseled chest of a King Crab fisherman? Chocolate-colored eyes of a brooding downtown actor? Tattooed arms of the man I’d later marry? Check, check, check.

I took my lemons of eyes and made lemonade. But to make sure it stayed sweet, I kept the sour news of my vision loss to myself. I’d shared the diagnosis with my family and closest friends immediately after the doctor’s visit, and I’d noticed that there was no way to prevent people from getting bummed out, which in turn bummed me out.

Everyone felt compelled to offer uplifting encouragements which were usually ineffective and always awkward. It was just easier to keep the matter private, and really, there was no reason not to, since the disease was gradual and wouldn’t be noticeable for a whole decade.

As time passed and I grew from a freewheeling 20-something to a 30-something mother of two, I continued to commit to my carpe diem coping strategy:

Move to Hollywood? Check.

Read all of Virginia Woolf’s books? Check.

See the faces of my babies? Double check.

Every year I inched down the spectrum of sight, closer and closer to blindness. My tunnel vision became more constrained until I could only see what was directly in front of my face. Then that picture became blurry, thanks to cataracts, which I developed about 50 years ahead of schedule.

Add in color blindness and the loss of depth perception and it will come as no surprise that, at around age 33, I was deemed legally blind and was trained on the white mobility cane, though I didn’t actually use it, preferring instead to just bump into things a lot.

Still I continued, somehow, to keep my impairment hidden. Going blind was a huge pain in the ass -- try applying eye shadow when you’re color blind and your reflection is the mirror is perpetually out-of-focus -– but the most inconvenient part of it all was the secret.

When I missed a stair at a party, I had to pretend it was because I’d had one too many cocktails. When I didn’t see someone’s hand extended for a shake, I had to claim ditziness. I ordered a burger and fries every time I went out to dinner so no one would discover I couldn’t read the menu.

I didn’t have one good reason to hide my blindness -- but I did have reasons, the biggest one being that I’d kept it a secret for so long, I would now need to confess to the lie as well as the blindness. There were close friends, former roommates even, who I’d never told, and I dreaded having the awkward coming-out conversation with them. I promised myself I would, when I really had to, but I kept pushing that day off.

It’d be convenient if I could point to one aha! moment in which everything changed, and I realized the error of my ways. The truth is, that revelation, like most, was several years in the making, Like my gradual blindness, it crept up on me, slow and steady, until it was impossible to ignore.

The thing that motivated me to give up my secret, ultimately, was my young children. I couldn’t tolerate the feeling that I was a hypocrite –- there I was, telling them never to lie, assuring them that any obstacle could be overcome if they faced it head-on, while I perpetuated a huge, unnecessary lie about myself and ran from my problems as fast as I could.

The first time I confessed the whole story to a friend, it was excruciating but the next time was slightly less miserable, and after a dozen such conversations, it wasn’t even particularly uncomfortable. Gradual desensitization is really a magical thing.

I’m still going blind, and it still sucks but it doesn’t suck nearly as much as it did before. And sometimes, that’s the best you can say about a life experience. Significantly less sucky than before. Call me an optimist, but that’s a victory in my book.