Retinal Vein Occlusion: Living with Disability: My Life with Blindness
Healthy Retina and Retina after Retinal Vein Occlusion
For Me The World Is Bright
I went blind slowly. I had my first Retinal Vein Occlusion (RVO) also known as Central Retinal Vein Occlusion (CRVO)in my right eye in October 2001, a subsequent RVO in my left eye in May 2007. Because I knew the symptoms,sudden blurred vision combined with a headache, the Left eye was treated within 48 hours which helped delay the inevitable blindness until July 2010. In July 2010 the damage caused by three years of treatment to prevent the pressure build up caused by the RVO began to fail and my sight deteriorated. Today I am legally blind.With only enough vision to detect contrast in light in my left eye and movement of shadow in my right eye.
When I was young I used to close my eyes and imagine what it might be like to be blind. I tried to imagine a world of blackness, a world of sounds, scents and touch, little imagining what the fates would hold for me. Today the world of the blind is becoming my world.
I cannot say my blind world is that of all blind people, as when I was sighted my world was unique to me so is my blind world. Before I came to this point I thought the world of blindness was a world of darkness, in fact for me blindness is light, unending, bright, burning, bleaching light.
A Simple Explanation of a Central Retinal Vein Occlusion
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Welcome to My World
Have you ever walked onto a street when the sun is low in the sky after a shower of rain? The wet road reflecting the sunlight and windows of houses like mirrors increase the light in the air? Black and grey shapes move in and out of shining pools of white light? If you have,welcome to my blind world.
This new world came to me over the last decade and as such, I was able in part to adapt and prepare a little.
My final realization that I was finally needing to accept my blindness was walking along the street I fell off the sidewalk and into the road. Luckily it was a side street, the event was more embarrassing than dangerous, the thought that people might think me a drug addict or drunk stumbling home was my first fear.
The realization came to me, I needed a cane, or anything to at least tell me where my feet were taking me. For a few dollars I was able to buy a cane and my eye doctor referred me to a visually impaired help group, Valley Center for the Blind in Fresno CA, they were able to help me contact a trainer to teach me the proper use of a cane.
I did not imagine that one might need training to use a cane. I thought one just needed to feel for the ground and everything else would come naturally. But even in the world of the blind things don't work that way, there is a technique for going upstairs, waiting at a crossing, walking through a store, and for going downstairs. Techniques that I needed to learn.
Until you walk into a crowd of grey and black shadows, walking with a white cane it is hard to imagine the fear one can feel. I know where I want to go, with every step I point the cane where I am going, with hope that the shadows will allow a passage. But the shadows flit left and right, charge at me and push past. Some I hit with my cane, to a howl of abuse, occasionally a shadow will take my arm, with a cheery voice "I'll help you!" As they pull me in a direction I don't want to go. "Thank you. I'm fine." I cry. To a hurt sounding mumble from the shadow as it disappears into the light.
Yes. Welcome to my world.
The Pity Party
There is a lot of sadness to blindness. The knowledge that I once saw the Milky Way and that for me there are no more really beautiful sunsets is hard at times. I haven't seen my wife for several months, she is there. I hear her sing or speak to me. She drives me to work, but I will never see her again. I hear the clatter of my dogs paws on the wood floor, the crash of her bowl against the wall as she eats, her bark at the doorbell. But I will not see her coat shine again or the tilt of her head as I walk to her treat box.
But my world is not the world of other blind people. I have seen those beautiful things. I have watched the sunset on thousands of days, I know how beautiful my wife is, I know the shine of my dogs coat. There are people who have lived all their lives with blindness.
So now I thank my God that I have known what I now miss.
Using a White cane for Mobility
Books and tools
William Elliott A Life With Blindness Blog
- William Elliott A Life with Blindness
A blog on day to day blindness matters, adaptive technology reviews and lots of hints and tips about blind living and resources.
Don't Let Blindness Isolate You
it is very easy to let blindness isolate you.
You may withdraw into yourself, lock yourself away and tell yourself all the things that you ca't do. True there are many things you can no longer do. Becoming an airline pilot for instance. But the real thing stopping you doing anything other than existing is your own attitude.
A very good tool to bring home how much you can do is a white cane. OK so it tells the world that you are blind. I can tell you from personal experience how few people actually see the white cane, they are in their own world and most don't notice anything about you. The white cane helps you more than hinders you, so step out and walk the streets you once walked, ride the bus, the train, fly across the world on vacation. It is not always easy to beat the demons within yourself but the best one to beat is the "I can't because ..." demon.
Getting out of that bubble gives you confidence to go on to greater things.n
A particularly empowering story about a blind man who overcame blindness and attitudes to blindness may be found in the book "Thunder dog" the true story of Michael Hingson and his life focuses on how he and his dig Rocelle escaped from the Twin towers of the World Trade Center on 9/11. The background story however is more empowering, how he, blind from birth, became a seniour executive at an advertising agency by ignoring the "I can't because I'm blind" Demon.
June 2014: My World Today
In the time since writing this hub, my world has changed quite a lot.
By the end of 2012 the CRVO in my left eye had caused so much damage to both the retina and optic nerve that monthly injections of either Avastin or Lucentis had little effect. So after discussion with my retinologist and a six month trial of "Just in case something happens", in June 2013 we stopped all intravitreal injections.
I admit that was a frightening step to make. All kinds of thoughts about possible positive effects of the injections came to mind. But in the end stopping the injections did little noticeable increase of my blindness.
Also at the end of 2012, I applied to the Guide Dogs for the Blind Charity, based in San Rafael, California for a guide dog.
After almost one year of visits, interviews, doctors paperwork, I was invited to their campus for training. I was paired with a handsome black male Labrador Retriever, named Leif.
Leif has been my guide for seven months now.
Leif: My Guide Dog.
Other Pages which may be of interest
- William Elliott A Life with Blindness
How the change from being sighted to going blind at the age of 49 has affected me, my day to day life and how a Guide Dog has changed that life in a big way.
- The Intel Reader
The Intel Reader is a wonderful piece of adaptive technology. A high resolution camera combined with a dedicated text to speech computer.
- Intravitreal Injection with Lucentis or Avastin
My own personal experience with treatment for retinal swelling with the drugs, Avastin and Lucentis. What to expect from the injection and afterwards.
- Succeed as a Disabled Student
Some tips as to how I overcame blindness to gain a degree. Tips and how to use resources which are available.
- Screen Readers for the Blind and Dyslexic
As a blind student I have found the need for my computer to have text to speech software installed. There are three systems which I have used. JAWS, NVDA and Windows own system. Each system has its own...
- Valley Center For The Blind
Webpage of Valley Center for the Blind, in Fresno CA contact details with links to services. A central resource for those seeking help with services for the visually impaired at all levels from gadgets to aid in day to day life to help with State Aid
My Hubs on other issues
- See the White Stick?
The frustration of a world that assume that you can see.
- The Red Light: Zen and the Art of a Blindman Crossing the Street.
Using a crosswalk controlled by a traffic light is easy. A child can do it. But a fifty year old blind man, finds frustration and humor in trying to use his cities latest traffic light.
- The Frustration of Travel for the Disabled
About a year ago I took a couple of flights across the US from Fresno to New York via Los Angeles.It was my first attempt at flying since I had gone blind. Originally it had been planned as a pleasure trip to...
- Share a Laugh
You know somedays nothing good seems to be the order of the day? A few weeks ago my wife left me to walk the five hundred yards or so from her workplace to mine.The day and night before had been filled...
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