How it feels to be Visually Impaired

Visual impairment is often considered a euphemism for total blindness. But there are several degrees of impairment and vision loss which may not be as obvious to an onlooker. I lived with Visual Impairment for three years in a way that was bad enough to make life difficult but not quite bad enough that others could tell I had anything but normal vision.

In this article I wanted to share some of the things I experienced in hopes that if you (or someone you know) are struggling with your vision you may find vocabulary to help you advocate for yourself and get the help you need. (I realise the irony of having a written article about this topic but using the ‘Text to Speech’ feature on your phone or ‘Narrator’ on your computer will help read this out loud for you.)

If you know someone who has vision loss I hope you will be able to read this to them to help them seek help, and let them know they are not alone in their suffering. I am also including some information and resources that you can look into that I hope will be helpful.

There are several kinds of visual impairment. Some common types are

1. Loss of Central Vision
2. Loss of Peripheral Vision sometimes known as “tunnel vision”
3. Blurred Vision that wearing correction glasses does not help
4. Generalized Haze
5. Extreme Light Sensitivity and
6. Night Blindness.

Due to prolonged use of steroid eye drops to combat an autoimmune eye inflammation (Sarcoid Uveitis) I developed loss of central vision, blurred vision, double vision in one eye, general haze, extreme light sensitivity and a mild degree of night blindness. The medications also resulted in high eye pressure which was serious for a while but became a non-issue after an intensive Ayurvedic treatment. Thankfully the pressure was managed well until then so as to not result in any damage to peripheral vision.

My vision was considerably worse than what you see on the right. Credit: Landa and Landa

My vision loss started slowly with blurriness in the centre of my vision which made it much harder to read. But pretty soon I was not able to read even large print books. I could not observe details in nature or people’s faces. (I was literally raceblind.) I had difficulty with glare and found sunlight reflecting off cars extremely uncomfortable. I found that lights at night would smudge, blur and spread, taking over my vision so I would often wear sunglasses while sitting in the passenger seat of the car after sunset. Of course, there was no way I could drive when I could see adults somewhat but not see dogs or children!

Safety concerns became apparent as a primary caregiver of my child. A few times I would walk back into the living room from the kitchen and struggle to find my child who was playing among the cushions. When she picked up things off the floor and put it in her mouth I would fret that I couldn’t find the object in her mouth. Later, I realised she had started pretending to put things in her mouth because she enjoyed my reaction. Being impaired as I was I didn’t know when she was pretending and so couldn’t ensure her safety from choking hazards.

Traveling on my own was also dangerous or painful. Walking back from the daycare my child had joined and not being able to see the walk sign on the pedestrian crossing from across the street because the road was too wide and the sun was in my eyes was scary. Adding to that I had no fellow pedestrians to follow. I felt tempted to get a cane and dark glasses just to signal to cars and huge cement trucks of my inability to know when to cross. What I would’ve given in those moments for a crossing where there were some auditory cues. After that I started to take door to door Lyfts and Ubers to avoid having to cross streets. Apart from this, the inequality in the way my vision was lost in each eye made for terrible depth perception. I had to be particularly careful on the sidewalks that would, without warning slope for a driveway. All in all, walking alone was ruled out.

Later, I learned the hard way that I should’ve asked for assistance during international travel too. While traveling alone with my toddler once, we had such a delay that the whole plane missed their connecting flights. Having to fill out immigration forms without the ability to read, and trying to navigate an airport without being able to read the signs, was painful and miserable. The kindness of an older woman, a doctor, carried me through and I will never stop being grateful for her.

Back at a more domestic level, navigating websites that I wasn’t already familiar with in terms of layout became very frustrating because the only way I could use a computer was by triple-zooming in on the screen. Finding anything new, or even doing something as simple as transferring photos from my phone to the laptop involved zooming in and out several times scrolling across each part of the screen. It was arduous, cumbersome, tedious and very frustrating. What took a normal visioned person a few minutes would take me roughly half an hour of strain and great emotional pain.

I also struggled with reading reports — print outs that my then ophthalmologist gave me for my reference were not accessible to me. Important notices, notes from my child’s teacher, letters in the mail, bills — all out of my reach. I became very dependent on my husband. I had never liked asking for help but now it could not be helped. Thankfully he was patient, supportive and understanding of my suffering. I didn’t like being dependent though.

Photo by Thought Catalog on Unsplash

The inability to read blocked my access to books which I used to consume voraciously. The Library, which had always been a place of great joy, became a source of deprivation and depression. But perhaps what hurt more was that I could not read bedtime stories to my child. As she grew able to enjoy longer and more interesting stories I had to limit myself to the carefully selected books that had extra large bold print with great contrast far below her level read in bright light instead of a more soothing dimmer light.

I also had trouble navigating social situations. People who waved at me from a distance sometimes thought I was rude to ignore them because they had no idea I couldn’t see them looking at me. I couldn’t well go around beaming in all directions at all times to avoid such misunderstandings.

Since my problem was not evident based on looking at me, I was expected to do things which I simply couldn’t. Even those who knew I had vision impairment often forgot simply because I had adapted so well as to make my overall activities seem effortless. How unfortunate that putting in effort to be self reliant elicited less support.

In any room I would have to arrange my position in a way that the light came from behind me or I would be rendered incapable of seeing those in front of me. Backlighting was particularly important in delicate situations where attention to subtle facial expressions is critical to navigate a conversation. If the person who I need to read is backlit or further than three feet away I would struggle and fail to understand the subtle nonverbal communication and an argument would more likely ensue. It isn’t easy to stop a conversation where friction is imminent to say, ‘Could you please stand there, yes, right there, so I can see your expressions better?’

Photo by Steve Halama on Unsplash

Though I am very friendly and love meeting new people, I noticed myself withdrawing from new people as much as I could help myself. I didn’t want to repeat the story of my health concerns to everyone. It is tiresome. Additionally reading someone new based primarily on larger body cues such as gait and posture, and on vocal tone is harder than putting this information together with someone you already know well enough.

Apart from these social limitations, I found myself entering a world of boredom. I am not, by nature, easily bored. I’m usually thinking of something interesting, or simply watching the leaves dance in the wind or observing the interactions around me. My mind comes up with narrations, or music based on whatever was going on around me. For a long time I thought the boredom was because my work was not challenging enough, or because I spent a lot of time entertaining a very young child and lacked sufficient social contact. While I was not able to read books, I certainly listened to podcasts and audiobooks, thirsty for intellectual stimulation. But somehow it was simply not enough.

I had no idea that my boredom was related to my vision loss until I heard it on a Radiolab Podcast about someone else who lost access to a rich visual environment. Details matter. Don’t let anyone tell you they don’t. When you sit in a restaurant and look up from your food to see the people at a nearby table smiling at each other, you are tuning into their mood and part of their story. When you look outside and see the sharp and clear lines of the branches of a tree, or the veins on a leaf, that is beauty to enjoy. When the moon is not just a bright blur in the sky but you can see all those finer details, you can gaze upon it without boredom for so very long. When I was visually impaired I would dream of being able to see the stars again, of being able to spot a bird in a tree, or see a whale spout from a great distance. These are gifts and make life so beautiful.

At a more mundane level, the boredom also came from missing out on visual entertainment. We keep the volume of the TV down so we don’t wake the sleeping child so we weren’t able to hear it too well, but to make it harder, the TV was too far from the sofa for me to see the expressions and catch the humour that comes from body language. Even when we used subtitles, I wouldn’t be able to read it fast enough especially when it wasn’t contrasted well against the background. Unfortunately, many of the ideas I had for remedying my boredom such as taking up courses, learning a language, reading textbooks or reading music all involved a strong visual component.

Photo by Rhett Wesley on Unsplash

Now that I have described the experience of being visually impaired, I wanted to emphasise the need to seek help and get support. Although I faced these limitations often, I adapted well enough to avoid major frustrations. Below, I will list some of the things I used to simplify my life. I hope you will find them helpful. Please do add anything else which you have found to be useful in the comments so it can help other readers.

1. I used ‘text to speech’ to read articles and emails on my phone. You can change the accent and speed of this voice. This one feature made it easier for me to use my phone than my computer!
2. I used ‘speech to text’ to compose emails and texts on my phone.
3. Under accessibility features I made the font and display sizes the largest possible
4. I also used darker backgrounds with white text wherever possible since that provoked less of a glare.
5. I enabled triple tap zoom on my phone. (Mine was Android but I believe iPhones also have such features.)
6. I used the voice message feature on Whatsapp and felt glad to hear the voices of my friends in their replies.
7. I signed up for Hoopla, Libby (which was called Overdrive) and RB digital apps which all had audiobooks as part of the local libraries.
8. When certain books were unavailable in audio through these resources, I got a letter from my ophthalmologist to apply for access to BTBL, also known as the NLS BARD service which provides volunteer-read audiobooks for the visually impaired,
9. I also used Audible sometimes, though it is quite expensive.
10. In addition, I realised recently that if you have an ebook on your Kindle, Alexa has a feature to read it to you. I wish I knew this earlier.
11. I used an app called Podcast Addict to listen to various podcasts.
12. On my computer I used the ‘Narrator’ feature and later got JAWS software from a visually impaired friend who had an extra license, to read longer essays and documents to me. There are a lot of keyboard shortcuts to learn and I never got good enough at this to make the best use of it.
13. There are other softwares such as ZoomText which also offer more accessibility features for the visually impaired.
14. More often, I used the Zoom (press Windows and + together) feature on the computer to just see for myself.
15. My acupuncturist also pointed me towards pinhole eye glasses and eye exercises.
16. I once visited a Blind Centre and they provided me a magnifier with light built in. They also gave me a printed sheet which had lines of words in different font sizes. I used it for months afterward to track the changes in my vision. In the Centre I was particularly touched that the lady who was working on filling in my application to join asked where in the room I would like to sit for the best lighting. No one had ever thought to ask before! After I shared my details with her she told me she was blind in one eye and quite impaired in the other but the way she handled her workspace, I could’ve never guessed. She was the first person I met with that in common with me.

Hooray for technology! Photo by Ryan Yao on Unsplash

A centre for the Blind and Visually Impaired usually is a great place to understand the resources designed for this population. They don’t need an ophthalmologist’s letter to certify that you need help. They understand through their intake process what your needs are likely to be. They inform you of and sometimes provide you with technological assistance and simple things you can do around your house to reduce the risk of falling or knocking things off a counter. They have catalogues of useful gadgets such as talking clocks and brightly coloured tape to stick onto steps in your house. They may also offer you software on your computer, or a laptop already installed with such software, devices that brightly light up and enlarge printed materials, or information about other apps which can aid in your navigation of the world (Be My Eyes, SeeingAI, etc). If your employment has been affected by visual impairment they also provide you opportunities to be trained in software which will help you go back to work and match you with suitable opportunities through their relationship with the rehabilitation centre.

In addition to seeking help at a blind centre, I would recommend you get a letter from the ophthalmologist in addition to reaching out to a blind centre because it can help you get discounted fares on public transport, make you eligible to ride in special transport designed to help those with mobility issues and if the impairment is regarded as legally blind, that letter can give you access to the blue placard from the DMV.

I was still quite happy and incorrigibly positive in my obliviousness to the severity of the loss. So when I finally became eligible to get my cataract lenses removed and the surgeon said ‘You are living blind and I will help you.’ I shrugged the word ‘blind’ off and thought to myself, ‘I’m not blind! In fact, if he can help me with the left eye, I could probably lead a pretty good life with my right eye as it is.’ Just like you don’t notice silver which is left out for a long time oxidises slowly until one day the shine is mostly gone, slow vision loss creeps in on you and you continually find new ways to adapt, all the while assuming you don’t have it that much worse than others.

While I prepared for cataract surgery I learned about how the eye takes a few weeks to recover and develop sharpness of vision again. I didn’t in the least expect what happened next. I was wheeled in for the surgery and the bright light shone above me. There was pressure, sound, some talking, and then I noticed the light above me became three separate bulbs. He wasn’t even done operating and I could see! The obstacle had been removed. As I waited after surgery I looked around at the nurses and marveled. It was like I had been transported back in time to when I had had normal vision. And perhaps the biggest shock was that my right eye, which, until then had been the better eye, registered so abysmally little.

Photo by Patrick Hendry on Unsplash

All day (and for a long time afterward) I was in wonder of the world. How beautiful even the bare branches of the tree. How wonderful to see the clear lines of the ceiling vents. How terribly the standards for the house and my own grooming had fallen. Who had scrubbed the whole world clean, I kept asking. I closed one eye, then the other to compare the vision from both and trying to come to terms with what I had been missing. When my daughter came home from school that day I looked and looked at her. I simply could not stop looking at her lovely face that I hadn’t seen properly for most of her life. I noticed a small mark next to her nose which I should’ve been able to see given how close I get to her, but I had never seen it before. I relished the clarity, so very deeply.

That night I, for the first time in all these years of being sick, let myself feel pity for what I had been through. I felt sorry for the oblivious, happy Janani struggling with such a burden. I felt like if I had known how much I couldn’t see I would’ve advocated for myself better, asked for more help, applied for a number of other benefits that I had probably been eligible for but had never tried to get.

A year since my two surgeries, and recovered from my atoimmune inflammatory illness, I still delight at the visual world, and the gift of vision. I wear glasses for perfect vision but can do quite well most of the time without them. I feel grateful that I had something that could be fixed. For most others vision loss is a one way street. In an effort to help others who are now going through what I went through I write to spread awareness. I would love to hear from those who can relate to these experiences and those supportive loved ones who might be reading this to you. I hope I have been helpful.