Retinal Vein Occlusion: Living with Disability: My Life with Blindness

Healthy Retina and Retina after Retinal Vein Occlusion

This is a photograph of a Normal healthy Retina, note the defined blood vessels as compared to the Retina below
This is a photograph of a Normal healthy Retina, note the defined blood vessels as compared to the Retina below
This is a photograpgh of a retina following a retinal vein occlusion. The occlusion, caused by a blood clot, effectively stops blood leaving the retina. This kills the light sensitive cells, reducing vision rapidly, causing Blindness
This is a photograpgh of a retina following a retinal vein occlusion. The occlusion, caused by a blood clot, effectively stops blood leaving the retina. This kills the light sensitive cells, reducing vision rapidly, causing Blindness

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

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.

Leif, my Black male Labrador Retriever, in Guide Dog Harness and ready for work.
Leif, my Black male Labrador Retriever, in Guide Dog Harness and ready for work. | Source

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Comments 21 comments

Sharyn's Slant profile image

Sharyn's Slant 5 years ago from Northeast Ohio USA

Hi Bretsuki,

This hub is so well written. I feel for you living with blindness yet I am so comforted with your acceptance. I have also read some of your other writing and look forward to following you. Best wishes!

Sharyn


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello Sharyn,

Thank you for taking the time too comment so favorably. I hope to expand on some issues in future posts. I hope that you will continue to enjoy them.

All the best Bretsuki


Nellieanna profile image

Nellieanna 5 years ago from TEXAS

Bretsuki, how good for me that the first sight on my screen when I gave in and clicked my computer open to take a quick peek at my email before launching into a very busy day preparing for a house guest - - was a notice that you had honored me by a follow. I always check the profile provided with those notices and came here, read yours & noticed your hubs. "My Life with Blindness" caught my eye for very personal reasons. Your personal and intimately descriptive account of yours truly touched me and brought a few tears to my eyes , especially when I got to parts about the shadows offering well-intentioned but counter-helpful steering and never again seeing the Milky Way, a beautiful sunset (2 of my favorite sights!) - and most regrettably - your wife. I notice your beautiful seeing dog avagar and I'll bet his name is Suki, am I right?

Few people realize it unless I've told them, but I've lived since birth with almost total blindness in my right eye, which sees only dim light and fleeting shadowy forms without focal points, - any of which, if allowed to be registered, do not align with, and distort the clearer images seen with my other eye. I began wearing glasses at around the age of 2, but the purpose of them was merely to encourage the muscles of the damaged eye to appear to align with the other one, rather than look otherwise. Beyond this, I had to wear a patch over the good one to insist that the bad one attempt to achieve alignment. The patch and mealtime often coincided. Chasing round peas around a fuzzy plate trying to spear some was torture. Peas are tasty but they still remind me of the unwelcome challenges.

Also intense eye-related headaches were every-day throughout my youth, and falls , breaks and skinned shins were frequent. Having very fragile bones, as well, I wore several splints on my limbs as a child and only my mother's determination prevented me from being permanently crippled by one in my right leg as the doctors predicted.

I definitely was a liability on any sports teams to which I was forcibly assigned ! I ran from softballs hurled my way, needing to be caught! I had no idea how far off they were or exactly their line of trajectory, so the better part of valor was to remove myself from their entire vicinity. There was not a position in outfield far enough from the action for me to feel safe & for the rest of the kids to welcome having to include me on their teams! But this was an activity for which active participation for all the kids in Physical Education classes was mandatory! I wanted to participate but my safety and life were more ardently coveted. It wasn't fun to hear the team captains groan when the coach placed me on their teams, though. There were countless everyday moments of embarrassment and shame meted out by kids. and even an occasional non-compassionate teacher who figured I was indifferent and so relegated me to the back of the room where seeing the blackboard was impossible.

My best girlfriend was virtually deaf and in those classes, she, too ended up out of the range of her hearing based on the same mis-presumption. Being out of range of the teacher's illustrations or words did us no good in those subjects, often in the maths.

My best little boyfriend wore thick glasses too. But he grew up to be a District Judge in that same small town, which surely must have been a satisfaction for him.

Of course, as you surely experienced when going through being monocular yourself, lack of depth perception has been a "given" of my life, for all my life up till almost completion of 80 years of it, where I now am.

But how thankful am I to be able to see almost as well as I've always been able to - seeing everything in 2D - but - what the heck! I learned early to compensate, enough finally to learn to drive at age 40! There's an advantage for an artist, as I aspire to be. My view is already in the dimensions of a flat canvas! No translation required! Actually I can't imagine being "me" otherwise! The automatic skill at compensating in seeing and finding safe paths through 2D paths has also helped me in other challenging areas of my life. I 'm "thinking" constantly, mostly subconsciously, as I am maneuvering along life's highways, heights and lows, judging distance and dimension by other landmarks and experience.

I've sometimes thought it must be worse for a fully seeing person to lose some or all sight, having known the contrast and, so - missing it fiercely But your story and marvelous attitude prove it can be transitioned with courage, zest and flair. I'm truly pleased to have found you and will follow and appreciate the effort your writing and reading must surely represent for you every moment of the day's challenging layouts.

I'm voting this hub with high marks!

Nellieanna Hay


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello Nellieanna, thank you for your comment, welcome to the ranks of my followers.

You are partially right in the question of dog names. Bretsuki is a compound name of two of my old dogs, both German Shepherds, Brett and Suki, the photograph in my profile is Polly, my pet GSD of 16 years. I am not elligable for a seeing eye dog, and I am ok with that. I'd spoil the poor thing anyway and it would probably enjoy a lifetime of retirement. LOL

As you say monocular vision was for me more difficult to deal with, after you get used to it people don't notice and think you stupid or clumsy when you bump into things or miss a thrown ball. Because you cannot judge distances to catch or a eletricity pole is on your blindside.

Thank you again for stopping by. I hope that my hubs comtinue to be of interest.


Nellieanna profile image

Nellieanna 5 years ago from TEXAS

Ah - I'm sure that your hubs will continue to be of interest to me - and others!

Thank you for the acknowledgement and interesting reply to my lengthy comment. (blush) - So it is Polly pictured here! Polly looks quite spoilable! Lovely dog! The other two whose names were combined to form your 'pen name" are perhaps deceased or abide elsewhere. I suppose my guess was at least in the ballpark, as they say. (smile)


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello Nellianna, thanks for your encouragement. Sadly yes both Suki and Brett are now deceased. Suki was my first German Shepherd, a rescue. She lived with me from 1988 until she died of cancer in 1994. I think she was about a year old when I adopted her, and it was a sad loss. Brett arrived on the scene within hours of Suki, a real charmer he decided he would have a nice lige with the pretty new GSD on the block and got his paws up on the fender so to speak after a couple of years, hanging around outside. He died in August 2002 aged about fifteen or sixteen years.

Polly is the only dog I bought from a breeder, I got her at 9 weeks old one week after the death of Suki, and she was quite a traveller. Born in Scotland, moved to England as a puppy, she moved with my wife and I to California in 2006.


Nellieanna profile image

Nellieanna 5 years ago from TEXAS

They are wonderful animals. My dad used German Shepherds to help round up his sheep on the ranch. But I wasn't allowed to make pets of them. I guess they needed to be undistracted. When I was grown I had a wonderful AKA registered collie, whose familiar name was a shortened form ("Gus") of the registered one. What a dog!


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello Nellieanna, yes the German Shepherd is my favorite breed of dog. Not that any dog is a bad dog though. Polly is UK Kennel Club registered, her real kennel name is Hariska Intrigue von Liaker, a real mouthful. I know the Hariska part is from the fact she was born on the Isle of Harris in the Scottish Hebrides and the ska suffix is to give it a Czech flavor, her parents were Czech Champions.

Maybe there are some hubs in her own life story?


Charlotte B Plum profile image

Charlotte B Plum 5 years ago

this is a most inspiring hub! thank you for sharing it with us. I love your attitude toward life!


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello Charlotte, thank you for stopping by and leaving a comment.

I very much appreciate that you enjoyed this hub. Thank you again.


skye2day profile image

skye2day 5 years ago from Rocky Mountains

bretsuki Blessings You have great courage to share your story. I do not know your world. I only know that God can turn all things for the good for those that love him. He will Light your way. I am honored to meet you I am not sure how I got here but it was no mistake. Your writing is beautiful and your story can help millions. Keep your heart on Jesus my friend Sending a warm hug of love. I have joined your fans. I pray your journey at the hubs is awesome and I be3lieve it will be there is no mistake you are here.


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Hello skye2day, thank you for your encouraging words. they are very much appreciated.

All the best.


Angela_1973 profile image

Angela_1973 5 years ago

There is a book that I read, it's out of print but you can still get it on Amazon"The Miracle of Metaphysical Healing" by Evelyn Monahan. She recovered from years of permanent blindness and paralysis caused by an accident.

I really like this book and would recommend it, it helps dealing with a lot of conditions.


Bretsuki profile image

Bretsuki 5 years ago from California USA Author

Thank you Amgela_1973 your comment is very much appreciated. I may take a look at that book.


Viv Darling profile image

Viv Darling 4 years ago from Saint Louis, Missouri

(OMG)I also have a retinal vein occlusion in my right eye, it came to me after a very stressful day. I awoke with very blurred vision, only to discover that sometime during the night I had suffered a stroke, which came as a result having diabetes and high blood pressure. I was aware of the hypertension but had no idea of the diabetes. I learned about 20 years ago that I had heart problems (An Enlarged heart) but according to my doctor, when I discover that I had an enlarged heart the doctor should have also told me that I was a full blown diabetic.

Thank you so very much for this contribution about retinal vein occlusions, because it lets me know that I'm not alone in my struggle to proceed forward regardless of all the obsticles that try to prevent me from succeeding.

Stay blessed.

Sincerely Viv Darling.


Bretsuki profile image

Bretsuki 4 years ago from California USA Author

Hello Viv Darling,

I can understand the feeling of being alone with CRVO, most people who it happens too have the initial thought that it is only happening to them.

There is a very good newsgroup on Google Groups for CRVO. Anyone interested can join in chats and see how common most of our experiences are. The group has helped me.


crisg 3 years ago

I was directed here during a search of CRVO. I was diagnosed with the condition 5 weeks ago, as a result of a car accident. My sight is very poor at the moment. It's comforting to know there are others' out there with the same condition.


Bretsuki profile image

Bretsuki 3 years ago from California USA Author

Hello Chris, I am sorry to hear of your vision loss. Please feel free to contact me if you have any questions. I also have a blog on Blogger, William Elliott: My Life with Blindness which you may find helpful.


Bretsuki profile image

Bretsuki 3 years ago from California USA Author


crisg 3 years ago

Thanks for the link. I'll be sure to take a look. I have lots of questions... you may regret the offer. Thanks.


Bretsuki profile image

Bretsuki 3 years ago from California USA Author

Hello Chris, no problem. CRVO comes quickly and it can leave us with all sorts of questions. Today's world it is so much easier to try and help each other.

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