I’ve Been Losing My Eyesight Since Birth And It’s Been A Blessing And A Curse


Producer’s note: Someone on Quora asked: What is it like to go blind? Here is one of the best answers that’s been pulled from the thread.

To many sighted people, the prospect of losing one’s sight is terrifying. They think about what they would lose: independence, visual beauty, reading labels at Costco. Pretty awful, uh?

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 can speak with some authority on this matter since I have retinitis pigmentosa[1] (RP), I’ve been slowly losing my sight 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 RP began to affect my central vision, turning it blurry and distorted.[2] 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.

Of course, I 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.[3] (Cue the Helen Keller jokes now.) So, my experiences aren’t typical for someone going blind, if there is such a thing as a typical experience in this case.

This is one of those times where brevity would be a disservice, so pardon the length of this answer. Proceed with caution.

Making choices

My early diagnosis (at age six) was equal parts a blessing and curse. Many people with RP 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. I’ll let you into a little secret: Having your choices winnowed down to a few clears makes it easier to make a choice and be happy with the choice. 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, “Only if I had chosen Betty/Amy/Susan/Wanda, instead of Veronica!” If you have 3, instead of 100 choices, the differences are clearer and regret is minimized.[4]

When I was sixteen, 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 no. I was entirely too stubborn and willful to stop before the bitter end and potentially pay a 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 made my moral compass clear for me. My RP helped me hone my moral compass early on: Be independent in a way that doesn’t unnecessarily endanger others.

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

As a science buff in grade schools, I entertained the idea of becoming a doctor. After thinking about it more, I realized that it wasn’t the most practical route, and would result in me doing something I didn’t want to

So, I reassessed my talents, as meager as they were, and decided on a more language-based career path. In the back of my mind, 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.

When I entered the law, I had planned that I would have enough time before I lost my sight to make myself indispensable. Through the vagaries of life and the economy, my plan fell through. (I learned that thinking that you can plan your life is incredibly foolish and arrogant. Life has a tendency to defy all attempts to control it.)

It was only when I began losing my sight in earnest that my career path became clear.

I realized that I was more in love with the idea of the law than the practice itself. What I was truly passionate about was writing and reading. So, I did that instead.

The nice thing about being deaf/blind 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.

Sped-up deadlines

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 and smart things.

A few weeks before my 30th birthday, I can look back at my life with a certain level of satisfaction. It has been a hell of a ride so far.

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.

It amuses me when people assume that their lives are a constant. I always knew mine wasn’t, so I’ve taken risks accordingly. I, however, tried to be smart about risks. I never took risks that I thought would bring more long-term pain than momentary pleasure.

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

I considered college my last shot at pure carefreeness, so I partied my little heart out. 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.) At one point, I was going to a party 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.

Truthfully, I still have a lot of these characteristics, even as my vision slips towards nothingness. I’m fairly game for many things.

Relearning how to live life

Having your vision gradually recede means that you are always chasing a moving target. You adapt to a certain level of vision, learn how to surmount any residual difficulties, adjust your lifestyle … and it changes again. It’s like some weird evolutionary adaption game that’s rigged (I think the name of the game is Life).

For most of my life, it was relatively easy to adapt. I figure 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, you lose enough vision that simple adaptations don’t cut it anymore and you need to change your life. For me, that point came about two years ago.

It’s a big lifestyle change.

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. It 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? There were even unexpected questions like: What shoes should I wear when I walk everywhere? What should I do with my white cane when I have to carry bags?

At first, these questions are overwhelming and nobody has all of the answers for you. The shift from partial sightedness into blindness is the hardest one. Hopefully, the changes after this one will be easier, since I’m getting better at being blind.

Personality changes

Undergoing a major life change–involving a vision loss or not–has a tendency of bringing out unwelcome changes in your personality. I’ll admit that 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 whom people spilled their guts to (therefore, I know entirely too much about my friends’ sexual lives). Don’t get me wrong. I was and am not a saint. I’ve been known to hold grudges and say hurtful things once someone has crossed a certain line.

When my vision suddenly tanked without warning, a lot of those things changed. I didn’t smile as often. My temper shrank to the size of a gnat. My self-esteem took what would be categorized as 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 an assumption of competence to feeling incompetent.

I was accustomed to success. I learned how to speak after getting a cochlear implant at age 6. 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.

Getting around became a strange maze full of confusing images and new rules. People began to interact with me completely differently, always approaching me and even grabbing me in public. I had no idea how to react or manage these things because I was new at being blind, but people expected me to know what to do.

Now that I’m achieving a semblance of assurance in my new life, 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 in the hell knows? All I know is that I’m smiling again.

The new person in the mirror

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 spots of 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 that 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 Ifeel. 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?

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

The Guild Conundrum

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 others’ overwhelming grief happened when I was in 9th grade. I had a low-vision teacher whom I met with 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 words of wisdom to provide.

In the back of my mind, 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.

The ironic thing is that 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, and 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 relationship with your family and loved ones.

Luckily, most people get over it eventually.

In all and 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 the business of living.

[1]: Retinitis pigmentosa
[2]: For more details on what I see and other aspects of being blind, read:http://www.quora.com/What-is-it-…
[3]: Usher syndrome
[4]: This idea of “Less is More” comes from a psychological study that more consumer choices (e.g. 100 varieties of shampoo versus 4) increases anxiety and unhappiness. The Paradox of Choice. I think the same principle applies to life. If you’re choosing between 100 potential significant others, you’ll get hung up on superficial differences and the fear of missing out (FOMO) rather than focusing on what is truly important to you.

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