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What it's like to go blind

To many sighted people, the prospect of going blind is terrifying. They think about what they would lose: independence, visual beauty, reading labels at Costco. Pretty awful, huh?

I can speak with some authority on this matter since I have retinitis pigmentosa, a condition that has caused me to lose my sight slowly since birth. At first, it was simply night blindness; then my peripheral vision narrowed — more precisely, I have blind spots that are gradually getting larger. Recently, my condition began to affect my central vision, turning it blurry and distorted. My blind spots will get bigger, and my central vision will get blurrier until I see nearly nothing. Right now, I have blind spots that are fairly large — 20/250 vision in the left eye and 20/350 in the right. So yeah, I'm fairly blind.

My vision loss helped me hone my moral compass: be independent in a way that doesn't endanger others

I won't lie: it's not a hot-stone massage with nubile young men feeding me peeled grapes. It's not that bad, either. It's life, and you learn how to deal with it. You don't lose as much independence as you'd think as long as you use adaptive techniques. Visual beauty is only one form of beauty. And reading labels at Costco isn't all that interesting.

I also have the complicating factor of bilateral profound deafness (partially mitigated by cochlear implants), as I have Usher Syndrome, which pairs hearing loss and vision loss. So my experiences aren't typical for someone going blind, if there is such a thing as a typical experience in this case. Still, here are some of the things that happen when you lose your vision.

1) Your choices narrow — and that's a good thing

My diagnosis at age six was equal parts blessing and curse. Many people with retinitis pigmentosa aren't diagnosed until their teens or early adulthood.

Knowing my vision would recede into near-nothingness helped me make certain life decisions, mostly for the positive. Having your choices winnowed down makes it easier to make a decision and be happy with it. If you have a plethora of choices, you're far more likely to get hung up on the inconsequential and superficial differences (Betty has blonde hair, but Veronica has black hair, and Amy has red hair!), rather than focusing on the substantive differences. Moreover, once you have a choice, there's an inherent element of regret. If something goes wrong, you'll always think, "If only I had chosen Betty/Amy/Susan/Wanda, instead of Veronica!" If you have three choices, instead of 100, the differences are clearer and regret is minimized.

When I was 16, I faced the rite of passage of learning how to drive with great confusion and trepidation. I lived in suburban-rural upstate New York, where a car was a necessity. All of my friends were getting their licenses, as I stewed in frustration and angst. My mother refused to let me drive, but through pure teenage obstinacy I got my learner's permit and started lessons. I reasoned that my sight was still quite good, so it was all right.

When I began lessons, I began to consider the realities of my future for the first time. Behind the wheel of a large SUV, I wondered if I would be self-aware enough to stop driving when I needed to, before I hurt anyone.

The truth was I wouldn't. I was entirely too stubborn and willful to stop before the bitter end, before paying a potentially high price.

So I handed in my learner's permit for a non-driver's ID. For my entire life, I've used public transportation and grabbed rides from friends and family. It's not a bad way to live. I don't have to think about auto insurance rates or car maintenance. My impending vision loss helped me hone my moral compass early on: be independent in a way that doesn't unnecessarily endanger others.

My impending vision loss also narrowed my career options, but eventually led me down the right path.

As a science buff in grade school, I entertained the idea of becoming a doctor. After thinking about it more, I realized that wasn't the most practical route. So I reassessed my talents, meager as they were, and decided on a more language-based career path, as a writer. I considered words to be a permanent part of my life, no matter what my sight or hearing were like. Words are words, in Braille or text. Words and language were the ultimate equalizers, since people would only judge me by my words, not my speech or sight.

The nice thing about being deafblind is that nobody really expects much from you in terms of earning power or achievement. So you might as well do what you like doing.

(Shutterstock)

2) You live life with a sense of urgency

When you know you're going blind, many things in your life seem accelerated. You start to think about your life as bifurcated: before and after.

I never had the illusion that there would be a next time, because I knew maybe there wouldn't be. I began making choices based on collecting the maximum experiences as early as possible

It was all about the now. I was very impatient.

This impatience has led me to do some pretty stupid things — and smart things.

I've interacted with all sorts of people: deaf, blind, immigrants, rich, poor, smart, and not so smart. I've lived in about 10 different states and some foreign countries. I left home at 15 to go to boarding school (overriding my parents' concerns). I went to the hardest and most challenging schools I could because I thought it'd be fun.

Of course, lowered risk aversion also leads to some stupidity.

I considered college my last shot at being truly carefree, so I partied my little heart out. At one point, I was going to parties five nights out of seven, but I maintained my academics, so I thought I was doing fine. I wasn't actually fine; I was probably on the edge of alcoholism, and even today I have a fraught relationship with drinking. There was also a period during my late teens where I would flirt with any guy who showed a passing interest in me. (Not nearly enough of them took the bait, unfortunately.)

3) You have to relearn how to live your life — over and over again

Having your vision gradually recede means you are always chasing a moving target. You adapt to a certain level of vision, learn to surmount the difficulties, adjust your lifestyle, and then it changes again. I feel like I'm playing a strange adaptation game that's rigged.

For most of my life, it was relatively easy to adapt. I figured out ways to walk at night using memory and landmarks. I always walked behind people so I could tell that stairs were coming up based on their head movements. It wasn't all that difficult to adjust to the small vision changes.

At a certain point, though, you lose enough vision that simple adaptions don't cut it anymore and you need to change your life. For me, that point came about two years ago.

I began navigating the world using a white cane, relying more on feel, sounds, patterns, and my remaining sight. I reorganized my apartment and turned myself from an admitted slob into a reasonably tidy person — otherwise, you're asking for a lot of stubbed toes and bruises. I interacted with words in a new way via Braille and enlarged text.

Change is hard, especially when it touches upon so many of the little things in life. I had to reconsider how I did everything. How would I read the mail? How would I write checks? How would I add a tip on a credit card slip? What should I do with my white cane when I have to carry bags?

4) Your personality changes

Undergoing a major life change — involving vision loss or not — can bring out unwelcome changes in your personality. I lost myself for a little while.

Most people would have described me as good-natured, quick to smile and laugh, and even-keeled. I was the one people spilled their guts to. (I know entirely too much about my friends' sex lives.)

When my vision suddenly tanked without warning, a lot of those things changed. I didn't smile as often. My patience shrank to the size of a gnat. My self-esteem took a roundhouse kick to the head. I became self-pitying and melancholy. I became a different person for a little while — a person I didn't particularly like. A large part of it was my shift from feeling competent to feeling incompetent.

I became a different person for a little while — a person I didn't particularly like

I was accustomed to success. I learned how to speak after getting a cochlear implant at age six. I performed well academically at rigorous schools. I passed a few bar exams. I liked to do things and do them well.

When my vision tipped from a nuisance into a disability, I no longer knew what to do.

Now that I'm achieving a semblance of assurance in my new life after much trial and error, I feel my old self returning, with some changes. I've learned not to be as harsh on myself, and allow myself to make mistakes. I hope I've become humbler, but who knows? All I know is that I'm smiling again.

5) You become more confident about your physical appearance

A surprising side effect of my vision loss is the readjustment of my perception of my body — for the better.

I'm an ordinary woman in the sense that I had insecurities about my body. My legs were too short and my nose a bit too big. I'd look in the mirror and see things I disliked — oh, that stupid tummy! I attached a fair part of my self-confidence to what I saw in the mirror.

If you can't see yourself clearly in the mirror ... what happens?

After a period of deep insecurity about my physical appearance, largely fueled by the sudden dearth of male attention, I began a new relationship with my own body. Unable to see myself all that well, I've begun to focus more on how I feel. Do I feel strong? Fat? Ugly? Pretty? These things are all internal.

Now that I swim regularly and wear fun clothes, I feel far prettier and more at home in my own body than I ever did before. I'm discovering that I quite like the body I inhabit. I don't think about the imperfections because I can't see them. Impending wrinkles? Who cares?

Seeing my body only in a blurry and distorted form has made me appreciate it more. Funny how the world works.

(Shutterstock)

6) Your loved ones might be more upset about your vision loss than you are

When you go blind, there are a lot of resources to help you learn how to adjust to your new life, but nobody tells you how to deal with others' grief about your vision loss.

My first experience with the overwhelming grief of others happened when I was in ninth grade. I had a low-vision teacher with whom I met once a week for training, and she worked with many other students with progressive vision loss.

One day, as we began our session, she told me, "One of my students lost all of his vision yesterday. He woke up, and it was gone." Then she proceeded to cry. She carried on for a little while, asking me for advice. Being 13, I had no wisdom to provide. I realized that someday I would have to face this. Others who cared for me would grieve for my loss — when I didn't need grief.

Many of my loved ones had a harder time adjusting to my blindness than I did. Not only did they have to watch me struggle to orient myself to the new world, but they had to change how they interacted with me. A lot of them felt a degree of guilt that I was the one going through this, when they had perfect sight and hearing.

This sentiment sets off a feedback loop. They feel guilty about being spared my difficulties. I feel guilty that they feel guilty. They feel guilty about feeling guilty and making me feel guilty. And so on.

The guilt, by far, is the most difficult part of going blind. Logistics can be learned. Identity and self-perceptions can be adjusted. Guilt is far more insidious, chipping away at your relationships with your family and loved ones. Luckily, most people get over it eventually.

All in all, losing your sight is hard, but it isn't unendurable. You get used to your new life. You learn how to do things differently. You get one life to live, so you might as well get on with the business of living.

Answer by Cristina Hartmann on Quora. This piece is an adaptation of Quora questions. Ask a question, get a great answer. Learn from experts and access insider knowledge. You can follow Quora on TwitterFacebook, and Google Plus


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