Proliferative Diabetic Retinopathy and Coping


#21

Will I have proliferative retinopathy in both of my eyes and I'm starting to think about getting a guide dog. I don't want to wake up and not be prepared.


#22

Wow, you’ve given me hope. People like you are amazing! I have proliferative retinopathy and every day before I open my eyes, i pray to God that i have no changes. I’m just curious, how good can you see?


#23

My visual acuity is measured at around 20/500 on average (varies slightly based on lighting, fatigue, distance, and so on). I also have slightly reduced visual fields, problems with glare, very poor depth perception, and virtually no night vision. In practical terms, I tell people I can’t see things that are small or things that are far away. I can see a building across the street but may not be able to see a person. Or, I may be able to see a person ten feet away, but not whether they are male or female or what they are doing. If I bring a book with regular sized print right up to my nose I can see that there is print on the page, but I can’t read it.

In everyday life, I use a combination of low vision aids and non-visual techniques. I am a proficient braille reader and use braille, a video magnifier, and the font enlarged to its maximum size in Kindle to read. I use my vision to see landmarks when I travel, but I use a white cane to find steps and stay safe in environments where lighting may not be ideal. I use a combination of screen magnification and a screen reader on the computer. I change between all these mediums based on what’s most fluent for what I’m doing. I might use braille to chair a meeting or read in bed, but use magnification to look at a graph or write a quick shopping list.

These days, a lot of mainstream technology has built-in accessibility that people don’t even know about. Your iPhone, Android tablet, or Windows/Mac laptop computer all have free, built-in magnification, speech, and braille support. Netflix and other video-streaming services have options to describe videos. And braille displays, which used to cost thousands of dollars, are now available for around $500 (for smaller, more basic displays). There are non-visual techniques for doing many things that people assume requires vision. It is not perfect and I still live in a world that was designed with the assumption that you have good vision, but although we have much work to do in the realm of accessibility, things are getting better all the time.

I would encourage anyone who is experiencing vision loss severe enough to interfere with their daily lives (reading, cooking, computers, working, and so on) to seek out vision rehabilitation services. Almost always, something that may seem impossible to continue doing is possible with the right training and tools.


#24

I love your attitude. People like you seriously amaze me. Thanks for the reply, I’m so scared that I will lose my vision, but you give me hope that life will still be enjoyable, one more question, when up close, can you see someone’s face? I want to always be able to see my sons face.


#25

If someone is within a foot or two of me, then yes, I can see their face. But my version of seeing is still not what a fully sighted person would see. I can’t see their eye colour or wrinkles, and I may see a furrowed brow only with difficulty and effort, for example.

I have never been through vision loss, so I can’t speak to the adjustment process. It is difficult at first, as is any major life change. What I can say is that I know many friends who have been through this process and who, years later, say that they are just as happy with their life and relationships as they were before losing their vision.

On the way home just now I had someone sitting next to me on the bus say that it was sad that I had never seen our beautiful city. But, even if I had no vision, there are so many other rich sensory experiences that sighted people often ignore and totally miss out on. I can hear the traffic and the people, the wind and the birds. I can feel the breeze and the heat of the sun, the newly fallen leaves underfoot and the puddles in the sidewalk. I can smell the grass and the recent rain, the restaurants and the coffee shops as I pass by. I can tell if people are happy, sad, frustrated, or scared even without seeing their faces. I can tell what the weather is like the moment I step out the door. And in my case I can see many of these things to some degree, just not well. There are so many ways of experiencing and enjoying the world beyond just vision.

If you ever do get to a point where you can’t see your son’s face, even though it may be something you always miss, you will find other senses to fill that void. And your son will still be your son, and you will still be you, and the two of you will continue to have experiences and create memories, but those memories will be based on touch and smell and hearing and taste and propriception rather than largely just vision.