*Originally posted May 6, 2014 on Psychology today
As soon as I started going blind, I resolved to keep it to myself.
In the beginning, my blindness wasn’t a secret; it was a detail I chose not to divulge. The difference seemed simple and clear to me. A lot of things seemed simple and clear when I was 19.
I found out the summer after my sophomore year in college that I was losing my vision, thanks to an incurable degenerative retinal disease called retinitis pigmentosa. As I sat stunned in the vinyl examination chair, a doctor explained that first I’d lose my peripheral and nighttime vision, then my central acuity, too. It was impossible to guess how long it would take, but with a little luck, he said, I might make it to 30, maybe 35, before I was blind.
I shared the news with close friends and family and the conversations went well enough until they asked what medicine I’d take. As soon as they heard that there was no treatment, no operation, the mood turned somber. Losing my vision was bad enough, but the tears and lucky charms and awkward inspirational speeches were unbearable. I hated the idea that this tragic flaw would become my defining characteristic; I was young and vivacious and about to earn an Ivy League diploma. I wanted to write my own life story.
So I stopped telling people about it. I didn’t look impaired—and wouldn’t for a long time—so they wouldn’t know unless I pointed it out. It was medical information, I told myself, and I had a right to keep it private. Besides, there was no time to waste with tears and self-pity: I had to live as though there were no tomorrow.
I wasn’t lying, at least as I reasoned it. Lies were statements that were patently untrue, stories you made up, like when I told my mother that I was sleeping over at my friend Miriam’s house and instead spent the night at my boyfriend’s. This was different: just me not correcting an assumption people made—that I was fully sighted—because it was more trouble than it was worth to explain; it was akin to not correcting customer service reps who mispronounced my name.
After college, I moved back to my native New York to start an acting career. My vision loss caused problems only in dimly lit places, where the dark was more dense, more absolute for me than for other people, like wearing sunglasses at night. During blackouts in the plays I performed in, I often ended up lost, tangled in backdrops or banged up after tripping over set pieces. When castmates noticed, I laughed it off, pleading clumsiness or making a blonde joke at my own expense.
Going out to bars and restaurants was tricky, too. I frequently fell down stairs or mistakenly walked into men’s bathrooms. Thankfully, there were few low-light social situations that didn’t involve alcohol, and alcohol could explain away a lot of stumbling. Still, it wasn’t really a lie, I told myself; I was just accentuating one part of the picture, like wearing makeup or a push-up bra.
At 24, I moved to Hollywood to try to break into film and TV. There, my hidden blindness was just one more untruth in a fleet of white lies, from my weight to my age to my natural hair color. My fiancé, who’d come to L.A. with me, knew the whole truth, of course—he had taken it in stride from the moment I told him. But even that confession was years in the making and prompted only by the realization that I could have lost him had I kept him at arm’s length. He’d raise an eyebrow when he overheard my fabrications, like telling friends I needed a ride because my car was broken—in reality, I couldn’t drive at night—but the upside of my tunnel vision was that I didn’t have to see his disapproval if I didn’t want to.
We soon moved back to New York, where, as I got older, the aperture of my vision closed in more tightly. I developed color blindness and cataracts that couldn’t be removed. And while my blindness evolved, so did my cover stories. I didn’t text on my phone because I couldn’t make out the print, but I told people it was because I preferred talking. When I became pregnant at 27, years before any of my peers, I explained that I really wanted to be a young mother, but the truth was that I had a profound, primordial longing to have children and knew that if I didn’t do it immediately, my vision would be so poor, I’d feel as if I were taking too big a risk with a baby’s physical well-being. The sun was still shining, but not for long.
When my son was born on Thanksgiving night, I soaked in the fuzzy sight of his skinny, writhing body and beautiful bee-stung eyes, and vowed to do whatever was necessary to take care of him, including being honest about my vision loss. That was easier said than done.
My lies had taken on a life of their own, proliferating like wet Gremlins. When meeting new people, I shot my arm out for a handshake, feigning confidence while knowing that I wouldn’t see their hand if they extended it first. At restaurants, I always ordered last so I could “have what she’s having,” which kept everyone from realizing I couldn’t read the menu. My days were a string of sleights-of-hand so well integrated into my routine that they became instinct. I employed them without thinking.
There were times, though, more and more of them, when in spite of every trick up my sleeve, I just couldn’t do something I used to enjoy. One night, I gussied up for my best friend’s birthday party in the West Village and stepped outside full of confidence. As soon as I walked through the door of the darkened bar, though, I was completely lost. I couldn’t find my friend. I couldn’t even find the door to get back out. After a few agonizing minutes—and after groping half the population of the bar—I finally felt for the exit and ran out, with the birthday present still in hand and sobs shaking my chest. Still, even that colossal, very public failure was not witnessed by the people in my life.
I waited with equal parts dread and yearning to reach the breaking point, the moment at which my blindness would be so obvious, it would be impossible to cover up. I kept pushing that moment away, though it moved a little closer all the time.
My son grew from a baby into a toddler, and when he was two, I had a daughter. As the task of parenting grew more challenging and my vision deteriorated further, I scrambled to find ways to compensate without asking for help. Taking the kids to the playground began to feel like a Herculean trial because they kept vanishing into the blind spots of my increasingly spotty vision. I used toddler leashes and squeaky sneakers and only visited playgrounds fully secured by fences and gates, but none of these strategies were foolproof, and I found myself incited to panic at some point on a daily basis.
My blindness had started off as the burden, and lying was what freed me from it. But as time went on, it was the secret that weighed me down.
One day, when my son was about five, he dug through my closet looking for his bike helmet and found a mobility cane that I’d recently acquired but had avoided using. He asked me what it was. I looked at him for a beat, holding the figurative skeleton in my literal closet. I’d resolved never to lie to my children, so I had told them that I had “bad eyes,” but that was a far cry from mobility-cane blind. There could be no semantics here. Not revealing the whole truth to my son would be the same as lying.
It’s terribly inconvenient, but honesty isn’t something you can pay off in one lump sum or cover with one grand gesture. It’s a daily grind: hard, tedious, unglamorous. It does, however, get easier with practice, and it brings relief. It’s a kind of lightness so great, it takes a while to experience it fully. It’s like putting down a heavy box you’ve been hauling up flight upon flight of stairs. For a while after you’re free of the burden, your muscles are still tense from the exertion, and once you can relax, you look back and wonder how you ever hauled it in the first place.
Republished via Two-Minute Memoir: Hiding in Plain Sight | Psychology Today
I read Nicole’s book, Now I See You, just a few months after I had become legally blind (2013). Reading books about how other people coped and dealt with their blindness, was a way for me to cope and deal with my own blindness. Nicole’s thoughts, experiences, and writing style keeps the book interesting and very relatable. If you liked reading the above article, I suggest you add her book to your summer reading list! 🌞 xx
Maria,. Thanks for sharing. Do you know if this is out on audio?
Hello Kandy… Yes, it is on audio. That’s how I “read” the book. I can’t recall if I found it on Audible or on NLS free books for the blind program (BARRD). Are you familiar with BARD?
Thank your for sharing Maria. Thought provoking.
Laura (Ballard) Fahr
Hi Laura! You are so welcome! xo
I would love to read this book! I have three children with Stargardts who are legally blind. Each of them has dealt with it a little differently in how open they are about there vision and how soon to bring it up. It is so hard to explain the gray area between complete blindness and 20/20 vision. New challenges are always turning up. It is a juggling act for sure, and I feel like I am constantly dropping the ball. In the end they each have to figure out what works best for them and hopefully I can help them navigate through it.
I’ve raised a daughter who has low vision. When she began to take charge of her own life as she grew older, I had to step down about revealing her low vision to leaders of the various activities she was in…this was the tough parenting part – I wanted her to be safe and to fully enjoy the experience by having it adapted to her vision needs. What was important to my daughter though, was being defined as herself and not as ‘blind’. I watched as she gracefully navigated her world, revealing her identity and characteristics in her own time and as safety necessitated.
Here is a comment in my daughter’s blog that speaks to her approach perfectly:
‘Conversely if you present yourself to the world as a multifaceted individual with ambitions, action plans, valuable things to share with the world and a disability further down the line of importance, that’s how you will be treated; like an asset to society, like a genuinely interesting person, someone with something to offer. ‘