If And When I Go Blind

Do you remember as a child, or maybe even as an adult, being involved in little games where you had to choose between terrible things? The game may have been called "Would you rather...", or "Which would you choose if you had to...", or something of the like. They actually made a card game out of it now.

For instance, would you rather:

A. Go deaf
B. Become a paraplegic
C. Lose your sense of smell/taste
D. Go blind



The point of these games being that you have to choose what you think would be the lesser of the devastations.

As a type 1 diabetic I can tell you for damn sure that it is initially devastating to be the victim of disease or injury; especially incurable disease or permanent injury. But the wonderful thing is that human beings have the amazing ability to adapt and overcome.

Disease and injury can either destroy or strengthen you. Itā€™s your choice.

When out in the world where daily life tends to happen, I have encountered many, many persons who are deaf, blind, paralyzed, or seriously ill. I am almost always left in awe of these people.

Why? Because they are strong! Because they persevere and have overcome so much more struggle and obstacle than most others.

They refuse to be tied down by their adversity. Instead they adapt and thrive!

How magnificent is that?!

When I was in college I met a woman in her fifties who was taking the same English class as me. Not two years earlier she had been the victim of a car accident that left her with terrible injuries which included a head injury that left her with permanent memory and cognitive difficulties. And yet here she was determined to get through college and earn her degree. Every day I would come to class and gain more and more respect and awe for this woman. She was so determined to prove to herself and her injuries that they did not hold her down.

Respect, yo.


As for me, Iā€™m over here scared out of my mind that I am going to go blind. It has been my biggest fear all my life. I sometimes will close my eyes and walk around my house and try to do daily tasks without the aid of my vision. Just trying to understand what it is like. It scares me to my core.

Itā€™s not just the physical, but also the psychological and emotional impact.

I rely so much on the input of my vision to get me through life. I love to look at beautiful things. I love to look at morbid and grotesque things as well. I love to look at things! I need to see. I need to see where I am walking, whatā€™s in my path, etcā€¦ I would be so scared, so insecure if I could not see the world.

How do the blind do it?

My inability to comprehend is probably the top reason going blind frightens me so very much.

But it is on its way to happening to me. I was first diagnosed with diabetic retinopathy when I was seventeen. It was only in my right eye and had not yet become bad enough to impact my vision. So I ignored it because I am an idiot like that.



When I was in my late twenties I began to suffer unignorable vision issues. Itā€™s kind of alarming to suddenly see globs of blood floating around in your vision like some spectral lava lamp. Also, seeing bright flashes of light out of nowhere. And ever increasing blurriness.

I had no insurance at the time so I went to Lens Crafters because they offer a fairly inexpensive but very in-depth eye exam. I was for the second time diagnosed with proliferative diabetic retinopathy. This time, however it was in both eyes and had advanced to needing immediate surgery. I needed to get my diabetes under control.

With no insurance surgery was out of the question.

When I finally got insurance several years later I did not go to the ophthalmologist right away. I had much more pressing health issues to take care of first. It was seven months before I walked in to the ophthalmologistā€™s office and that was only because the DMV suspended my license because I failed the renewal vision exam.

For the third time I was diagnosed with proliferative diabetic retinopathy. I endured four surgeries on my right eye, five laser treatments on my right eye, and two laser treatments on my left.

I have lost virtually all the vision in my right eye. I can perceive light and movement, but thatā€™s it. Now my left eye, despite much better diabetes control and medical care, is still actively deteriorating.

Did I wait too long to start caring and trying?

Am I going to go completely blind?

How will I survive without my precious vision?

Who knows what the future holds? I may keep whatā€™s left of my vision, I may lose it all.

No matter what happens, I know I will adapt and thrive. Thatā€™s what we do, we adapt and thrive.

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Adapting and thriving is what I am counting on myself. I just had the oil removed and a cataract fixed in my right eye, and the only vision I have 3 weeks later is very bright light and shadows. My left needs surgery, and I'm not sure how I will function when we do that and I can't see anything from my right. As you hint, its a whole bunch of uncertainty as far as what might come back, how much worse it might get, etc. No matter what, we will adapt and find new ways of getting along. I'm doing it bit by bit everyday. I know you will too.

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I hope everything works out for you. I too have oil in my right eye, my retina specialist says it will stay in permanently because there is scar tissue in a place they can't remove it and it is pulling my retina, so the oil has to stay to keep things flat. I really hope you and I both get to keep what we still have. But, yes, no matter what happens, we'll handle it. :)

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Tamra, My mom was blind, reitenopathy, she told me something I thought was important. She said she never missed seeing so long as she could always discover new things. In short her brain was the most important thing. So long as she had it she said she woudl be fine. She was fine, and that is what i loved so much about her. Yes blindness scares me to death but it would scare me more if I ever thought I might lose my brain power..............................rick

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Thanks for sharing,

I hope you have many good vision years ahead.
My doctors or in general all the scare tactics about diabetes related side-effects / conditions had me so scared I Get Retina checks regularly. I had a family member lose their leg to gangreen when I was younger. Didn't help that he was diagnosed type 2 late after suffering possible DKA for years.

I too value my site very much but now that you mention it Hearing and Taste are two things I would relish in -pardon da pun- , If I lost my sight.

Keep on keeping on is a good thing about us humans. I try to use both sides of my body for doing things in case I suffer a stroke will help out some. I'm so greatful to be alive for the most part. I myself was diagnosed near sighted a few years past when I should've mostly because I memorized the Eye chart by heart when in Elementary School. Also found out about Astigmatism a few years late. Now I know why my vision sometimes changed each time I blinked my eyes. The toric lenses work better than glasses obviously but not too much.

Hope new techniques become available to delay retinopathy to extend your vision as long as possible. Thanks for the image Fist Bump Here's a smaller Bump right hand back at you.![|480x480](upload://zXvkR6RjsO3q8zfftB4bGX5aSTk.jpeg)
Overthinking as usual worst to best may flip flop later but my thoughts right now are.

A. Go deaf - Love to walk, can use sight to read sign language still remember good tunes.

B. Become a paraplegic - Still get around, not easily but sight & taste are big

C. Lose your sense of smell/taste - If I lost smell and taste, be major loss but I could still see nature's beauty.

D. Go blind - Don't think I'd like that at all

Visual Question definately Sandpaper Wipe. Never done it but I've had hot sauce in eyes and that pain was excruciating. I still eat hotwings and change my contacts but not anywhere near the same time of day.

MikFly

From the moment I was diagnosed, I feared most of all amputations---especially feet/legs. That's what 40 years as a dancer does to one. While adapting is unavoidable, I'm not so sure about thriving. Been through a little too much loss in the last few years for me to be optimistic about that one. But who knows? Maybe I will surprise myself......Blessings

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Hiya, I came to our site tonight and plugged in ā€˜blindnessā€™ and your post came up.

Think one of the hardest things about longtime diabetes and itā€™s complications is guilt, shame, the feelings I get when I think about the latest loss. But then I get angry. Who could possibly be a perfect diabetic? Canā€™t clean up the periods of urine testing and one shot days; adolescence; college; whatever.

Thanks for your post. You helped me recognize that guilt is not going to help me in any way
to adapt to this new vision.

Community, self compassion and patience. Lots of hugs in this grief time.

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Well this is certainly something some of us have to look forward to.

Iā€™ve been nearly a year with fluctuating vision in my right eye, occasionally watching as a stream of fresh blood flows across my field of view like some kind of serpent and causing a speckled blotchy and distracting loss of vision for months. They vary in size but keep coming. Sometime Iā€™ll go weeks or even a month without new bleeding. I get hopeful.

Iā€™m still waiting for an appointment for the viteectomy that the ophthalmologist tells me I need. Not that Iā€™m looking forward to it but if this wonā€™t stop with the lasers and injections Iā€™ve been subject to, itā€™s a last ditch attempt to salvage my vision I guess.

As a person with always good vision, Iā€™m afraid of permanent darkness. But we will see how this goes. Still trying, without success, to make sense of this disease, diabetes, that I donā€™t recall asking for. And the various complications, mostly mild this far (except vision loss).

So we take small comfort, not to be alone in this.

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Have you considered finding a retina specialist?

https://www.asrs.org

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I saw David Wong in Toronto in May.
A retinal specialist. He said I need the vitrectomy (but not urgently) because that vein will just keep bleeding but of course I hope he is wrong.
Itā€™s been over a month since I had a big noticeable bleed (and Iā€™m currently typing this with my left eye closed which I do to try to give the right eye something to do, when itā€™s feeling up to it).
Also Iā€™ve been getting Eyelea injections on a regular basis for a while.

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Iā€™ve hear that the internet patient forums for the visually impaired are fantastic. A friend of mine has invited me to join a couple, because he hangs there, and really likes the people there. He says they are hilarious. He likes this one: Blind and visually impaired support group. | Facebook

image

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I fear blindness, if something else doesnā€™t get me first! As an ā€œoldā€™unā€, and living alone, I just donā€™t know how I could live without my pump and cgm if I had to. I have, as they say, a prescription they canā€™t improve due to different astigmatisms and poor results for one cataract ā€˜fixā€™. I use a magnifying glass and need to look for one of those floor standing magnifiers. So difficult to see the insulin location in the syringe when changing infusion sets. I donā€™t seem as bad off as some of you but mine feels pretty scary to me! As yours does to you. I keep hoping for visual aid improvements.

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Darn it! Iā€™m sorry to read of your struggles. One thing diabetes does is test us beyond where we want to be tested! Hugs to you and thanks for the solace in reminding me Iā€™m not alone.

Wow! Very cool. I have found a few too. One is called Hadley. Also locally Iā€™ve hooked into an agency that is helping me with making the computer and iPhone more audio and maybe a guide dogā€¦We CAN do this!!! You fellow travelers donā€™t know how not alone you make me feel. Thank you thank you. :smiling_face_with_tear: :smiling_face_with_three_hearts:

Hi Bluebird,
Just an fyi. If go to Michaelā€™s on line, you can get coupons off for magnifiers. I just bought a floor lamp and one for my desk. Theyā€™re great. Also another good source is Maxi-aidsā€¦Best to you

I just signed up for Blind and Visually Impaired Support Group. Thanks!!!

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Just a note, maybe relevant , maybe not:

Out of my zillions of students, I remember three who were blind. I was reminded of the oldest of them a few days ago.

Aside from studying , like everybody else, he wrote poetry in an ancient tradition. He participated in public poetry-performance meetings, or whatever you want to call them, and published a least one book. I think more.

He was also one of the two people in my history who made white coffee for me. White coffee must be complicated to make if oneā€™s blind.

Thanks.
M.

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