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Blind and Visually Impaired Community

Full History - 2021 - 12 - 18 - ID#rjnci8
14
How should I prepare to be blind? (self.Blind)
submitted by NotWhatICameHereFor
I’ve been diagnosed with rod cone dystrophy. It has presented asymmetrically, so I have retained my vision in my right eye for now. While it is genetic, none of my family members have this.

It took about 3 years from the first noticeable symptoms for my left eye vision to be bad enough that I couldn’t read or drive. Assuming my right eye follows the same progression, I have at minimum 3 years to prepare myself to be blind. I hope I have a lot more but I will feel better if I’m prepared.

So I have a few questions for you all:
1. How should I prepare so that I can retain as much independence as possible? What should I be learning?
2. Is there anything you wish you had done before you went blind? Especially with family. (I have a 6 year old daughter and a wonderful husband)
3. If any of you are teachers, how did you adapt to teaching without sight?
4. How do you prepare yourself emotionally? I’m very much struggling with this loss and am probably spending more time worrying about losing my vision then enjoying the time I still have with it. How do I get past that?

Thanks so much in advance to anyone who takes the time to answer any of my questions. It means a lot to me.

Also, sorry if these questions have already been answered before. I just discovered this sub and could only go through so many posts before my anxiety got the best of me.
ColoradoCorrie 8 points 1y ago
My answer won’t be as comprehensive or thoughtful as the others, but I knew someone in your situation once and her approach was very wise. She was a retired college professor, and right away she started searching for a new hobby that she could still enjoy after her sight was gone. She decided to take up weaving and bought a loom. She made beautiful blankets that were treasured by the people she made them for. So in addition to getting all the practical training you will need, make sure to invest in your leisure time. Hugs!
NotWhatICameHereFor [OP] 1 points 1y ago
Thank you, that is a great idea. I’m going to have to get a little more creative with my leisure time!
KillerLag 7 points 1y ago
Have you spoken to your local agency regarding rehabilitation training? They can discuss what training could be useful (O&M, ILS and such). Depending on where you are, they can also assist with your work for workplace adaptations.

Emotionally, it can be quite hard. You may want to schedule some time to talk with a counselor, or maybe a good and understanding friend.

EDIT: I was taking a quick look at your previous comments, and it seems you may be from Ontario. You can ask your eye doctor to send an updated eye report to CNIB/VLRO and they can get in touch with you regarding training (I also work in Ontario).
NotWhatICameHereFor [OP] 2 points 1y ago
I do live in Ontario and have emailed CNIB based on your comment, so thank you for that. I won’t see my doctor for a few months but I will talk to him about the recommendation when I see him next. I’m also lucky to live in a walkable neighbourhood very close to a downtown core. All of our streets have street braille as well so I should be able to get around the neighbourhood on my own.

I am seeing a counsellor, but when I brought up what I’m going through she asked me if I believe in miracles and then told me about some chiropractor who healed himself with meditation so I think it might be time to request a new one.

Thanks again for taking time to give such great advice!
KillerLag 1 points 1y ago
Yeah.... you may want a different counsellor. Some people who are suppose to help are... less than useful some days. A client of mine was once talking to her priest about her issues, and his response was "you need to pray harder. You obviously aren't praying enough". My client was.... very, very upset by that.

You can ask your doctor to have your previous eye report sent in, to start the process going (there is a bit of a wait time, especially now with COVID, and also depending on your region).

Is your phone an Android or an iPhone? It can also be useful to learn some of the accessibility features on your phone. Even if it isn't something you need right now, it is useful to learn some in case you come across a situation where your sight might be unexpectedly worse than average (bright lights, poor lighting, etc).
NotWhatICameHereFor [OP] 1 points 1y ago
Bright lights kill me, I’m always looking very extra cool in my sunglasses. I use an iPhone
KillerLag 1 points 1y ago
lol. I have extra large sunglasses, and they don't look cool on me at all.

IPhones have Zoom, Magnifier and VoiceOver built in (among others, I believe there are more options nowadays). Take a look to see, there might be a setting that can be helpful for you now.

https://www.apple.com/ca/accessibility/vision/
OldManOnFire 4 points 1y ago
*How should I prepare so that I can retain as much independence as possible? What should I be learning?*

For your own peace of mind you should learn where to get a white cane, how to call for an Uber, where to get text to speech software, how to enlarge the font on your phone and your laptop, where to get a talking alarm clock or a guide dog and anything else you think you might want. You don't need them now and you might never need them, but knowing those things are available and knowing how to get them with just a phone call gives a sense of control over the situation.

*Is there anything you wish you had done before you went blind?Especially with family. (I have a 6 year old daughter and a wonderfulhusband)*

As soon as I got the diagnosis I started a blind bucket list. This summer I waterskied the Tennessee River with my kids, flew kites at the beach with my parents, stepped into the batting cages and swung at slow pitch softballs I can barely see (0 for 70, yay me!), painted an oil painting, and got into a Nerf gun war with my grandkids. I flew home to the mountains and swam in Navajo Lake and hiked the national parks I used to hike when I was young. I'm flying back next week to spend Christmas with my parents and to see snow one last time. After I come back to Texas my wife and I will go miniature golfing.

The main point is to create visual memories of the people I love so when I can't see them anymore my last memories of them will be smiling, happy ones. A second reason is to be able to live without regret, and a third is to give myself a sense of purpose now that I'm not working anymore.

*How do you prepare yourself emotionally? I’m very much struggling withthis loss and am probably spending more time worrying about losing myvision then enjoying the time I still have with it. How do I get pastthat?*

That's the hard one.

There's no instruction manual for going blind. Nobody tells you how you're supposed to feel. And unless your blindness is genetic and others in your family have gone through it it's a very lonely, frightening experience. So you make it up as you go.

Every kid has imagined being blind. We've all been in pitch black rooms and had to grope our way around. The mechanics of blindness are easy to imagine. But in all those childhood daydreams it never crossed our minds to wonder about the *emotions* of going blind. The sense of grief, the loss of identity, the realization that your seat belt and your Covid vaccine and your exercise routine you think keep you safe are nothing against the powers of Fate. We take comfort knowing tragedies happen to the unprepared, the knuckleheads who don't read the warning labels, the ones whose hubris and foolishness left them defenseless at best and brought the tragedy upon themselves at worst. But we're safe, right? We take our Vitamin C and pay our insurance bills on time and keep a set of jumper cables in our trunk.

Until the day we're wondering why our own eyes are betraying us.

And we realize, with a quiet sense of horror, that bad shit happens to the prepared just as easily as it happens to the knuckleheads, and that justice is a man made concept the Universe doesn't recognize.

Okay, enough gloom and doom. That's Stephen King's territory, not mine. Mine goes something like this -

You are not your eyesight. You are not your job. You are not your performance review. You are not your salary. You are not your grades.

You are you.

You are just as worthy in the passenger seat as you were in the driver's seat. You deserve as much respect as an unemployed blind person as you did teaching. You are beautiful as a human being.

It might take awhile to get there. It did for me. Losing my eyesight meant losing my job and my job had become my identity. I certainly felt useless and lost at first, but I came to realize I'm not my job. Being Employee of the Month doesn't define me anymore. Ironically it took going blind for me to finally see that.

Being blind isn't nearly as hard as going blind. Human beings can adapt to just about anything. My life is good. It was good before and it's a different kind of good now. Different, but no less real. The transition is hard but it doesn't last forever. There will come a day when you accept your blindness instead of denying it or fighting against it. You're not surrendering to it, you're just acknowledging that it's here. Once that happens you'll realize how much emotional fuel you've burned fighting it, how tired the fight as left you, and how nice it feels to finally make peace with something that you treated as your enemy.

But you don't get there overnight. You can't. You have to let yourself grieve first. If you try to skip over the grief and the negative emotions and jump to the front of the line you'll discover those negative emotions will haunt you. You have to acknowledge they're there, and their importance (holy cow, I just used they're, their, and there in the space of four words!). You can't work through them until you admit they exist. It's okay to feel afraid. It's okay to feel the Universe has been unfair to you. It's okay to get pissed off. It's okay to be angry. It's okay to feel jealous. It's okay to be depressed. It's okay to be self conscious. It's okay. Those feelings will all pass. You will remain.

If I can give one last piece of advice, replace everything you lose with something else. Don't let blindness leave you empty. If you lose your ability to draw then take up sculpture. If you lose your ability to binge watch Game of Thrones then take up audio books. If you can't jog through the neighborhood then jog on a treadmill. If you lose your ability to do something learn something else to take its place. I've found that to be the key to staying happy.

As a former teacher I salute you. As a fellow blind person I understand you. And as another human being trying to do the best I can, I recognize you.
NotWhatICameHereFor [OP] 2 points 1y ago
Thank you so much for this! The bit about replacing everything I lose with something new is especially great advice! My husband actually bought me a piano during lockdown so that I could learn something new that I can do even when I lose my vision since a lot of my hobbies involve a lot of movement and vision requirements (volleyball, tennis, skiing, ballet, trail running).

Thanks so much for your great advice! It really gave me some hope that I will come out of this feeling okay at some point.
xmachinaxxx 3 points 1y ago
First step is to get orientation & mobility also called O&M training Your local center for the blind or low vision clinic can help you get set up with that if you haven’t already done it.
NotWhatICameHereFor [OP] 1 points 1y ago
I haven’t as I still have normal vision in one eye, but am going to get connected with CNIB to start learning assistive tech etc. soon. Thanks!!!!
DrillInstructorJan 2 points 1y ago
The bottom line is that even in the worst case you will be OK, most people are.

I have said this a million times on this forum so I will keep it quick, but the way I explain it is like this: people get overwhelmed with the idea that they have to find a way to love sight loss, like all the successful people seem to. Of course the reality is nobody loves it, you don't have to love it, you just have to find a way to not love it that you can handle day to day.

Finding a way to like it is probably impossible. Finding a way to live with that is very possible.

The most powerful thing you can do is to learn how to deal with it in a practical sense because when you realise that work, fun and everything else is very doable, that you can go places, meet people, and generally have a life, it becomes a lot easier.

The long term downside for me is that handling it is totally exhausting and that is the truth, but if it's that or sitting around doing nothing, that's a really easy decision for me.
NotWhatICameHereFor [OP] 3 points 1y ago
Yeah I’m not excellent at sitting for an extended period of time. I’m more go go go then take a nap. I doubt that will change when I can’t see. It will be weird though. I don’t see myself doing any kind of work that is at a desk all day, online teaching was hell and my legs were bouncing all over the place all day. So I definitely won’t be sitting at home listening to audiobooks all day, or whatever people do when tv isn’t an entertaining option.

I don’t expect to like it, but I do hope to overcome it. It’s just a matter of figuring out how. At the moment my current strategy seems to be just fretting and crying so not off to a strong start as yet. But I’m a stubborn lady, I’ll get there.
DrillInstructorJan 1 points 1y ago
It is weird and that is something I have said a lot. More than anything else it's just a weird experience. And a bad experience, but the badness you can manage. It keeps being weird. Just realising you're a ninety minute journey involving three modes of transport away from home, you can't see your hand in front of your face and it's amazing, but somehow that's okay.

You can fret and cry all you want, like with so many scary things, the trick isn't to make it not scary. That's impossible. There is no trick. You just have to do it anyway.
Dark_Sunlightx 1 points 1y ago
I’ve been diagnosed with cone dystrophy and I’m trying to figure out the same thing. I think I have accepted it as it is what it is, but as I get older and it gets worse, it became more real so I’m thinking I should probably prepare myself.
EffectiveYak0 1 points 1y ago
You might want to start learning how to use a screen reader. You have the luxury of figuring out your workflow and which screen reader will work best for you ahead of time. Most folks seem to stick to Jaws or NVDA. I personally like using VoiceOver, but I also regained a small bit of useful vision so I don't totally rely on screen readers.

You'll also want to gradually get used to listening to the voice at a faster and faster rate. It's sort of a workout, but eventually you'll be able to understand it at very high speeds. I started at the default speed, and now I'm pretty comfortable listening at around 450-500 words per minute. Lot's of folks here can go even faster. It helps to go fast when you can't skim material like you did before.

Good luck, OP. You can do this.
NotWhatICameHereFor [OP] 2 points 1y ago
Thanks! I might have a head start on this as I’m a fast talker and prefer to listen to podcasts at 1.5x speed. And thanks for this advice, I’ll start looking into screen readers now. My doctor said he expects I will retain enough vision to get around safely, but as it’s my central vision that is affected most, screens will really be a problem. So this already makes me feel better. Will start using one ASAP to get the hang of it.
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