Posted by BatEars on 5/30/2012 at 3:32 AM
Hello all. Currently, I can see fairly well as long as I am in full light, but the minute light dims, it's like a switch is flipped and I can see absolutely nothing. No shadows, no movement, just unending blackness. It's a neurochemical problem with the rods. It could get worse at any time, and there is a possibility that I could lose my sight completely. I think the worst part is the not knowing; not being able to predict the course the disorder will take.
I am learning Braille now while I can still see some, and I have already adapted well enough that I get around fairly well even in the dark, but if anyone has any tips as far as living with blindness goes... Well, I'm a little out of my depth here. Since I began going blind, my hearing and "feeling" my surroundings has become quite acute. I fully believe I can learn to live with this, but... I guess I may need a little help, and no one I actually know has any experience with anything like this. Any advice would be greatly appreciated.
Thanks, and blessings to you all,
BatEars (as my sister affectionately began calling me since I started hearing everything around me)
There are currently 7 replies
Re: Going BlindPosted by Joe S on 6/3/2012 at 10:14 AM
My name is Joe, I work at the American Foundation for the Blind. That is a difficult situation, and it sounds like you are connected to some great services and programs. I commend you for starting to learn braille, and seeking out help with your adjustment.
There a ton of great resources available through AFB's family of websites. I would strongly suggest you check out VisionAware at www.visionaware.org or find it through AFB.org. VisionAware provides great tips, resources, and first person experiences of how persons have dealt with many of life's challenges as a person with vision loss.
I can understand your personal situation to a point, as I have retinitis pigmentosa with a healthy dose of cataracts. My retinas deteriated from the outside to the inside, tunnel vision -- losing my exterior (periferal) vision first, but the first thing we noticed was the loss of night vision and accommodation to changes in light.
Are you using a cane in dark areas to help you navigate thorugh space? I started using my cane first at night and indoors (dark buildings and such). I then had a few situations that helped me realize that it was time to use my cane all the time while traveling indoors, outdoors, daytime, or at night. It sounds like you are navigating your adjustment process -- I say yours because everyone's experience is a little difference with many of the same themes. Adjustment is a process and a cycle -- you take five steps forward and may take a few back when certain situations happen. But, with a lot work and time, you navigate a thounsand steps forward, most persons do take a few steps back on occassion, but typically those are temporary.
There are great tips for all kinds of activities and for your home on VisionAware. I strongly suggest you check out the resources available. Feel free to post on our message boards -- we have many people who have been there and done that. It is always great to connect with people who have successfully navigated the path you are traveling or a similar trail.
Hope this helps!
Re: Going BlindPosted by BatEars on 6/4/2012 at 11:45 AM
Thank you for your reply and advice. I currently do not use a cane because I am permanently disabled in other ways. I only have use of one hand and my ankle does not work properly, so I use a crutch. I can feel obstacles with that most of the time and I track the steps of the person next to me by sound so I can hear if they step down or whatnot.
Despite my situation I am very grateful that, if I have to go blind, I at least have time to adjust to it. Did you feel the same? I will definitely check out VisionAware, and thanks again for your response.
Re: Going BlindPosted by tsh1013 on 7/5/2012 at 5:33 PM
Hi, I have gone blind in the last year and it can be scary. I lost my vision from diabetes but I dealt with lsoing it over a 15 year process. Using acane is very helpful and I alsohave a leaderdog. I work from home and tach online for a University ,so you can manage anything without sight. Well, except for driving.lol You have to realize that life is not over and you need to take each day at a time. Check out the resources in your area and try Hadley for any courses in braille or computer classes to learn how to operate with a screen reader. Nicci
Re: Going BlindPosted by PMBlind on 7/12/2012 at 12:17 AM
Since I have been blind in my right eye and now with little vision in my left eye, I also learned how to read Braille and other things as well. My other senses have also picked up due to the loss of vision.
There are definitely some advantages to the vision loss especially when it comes to your other senses. For me my smell is much stronger as well as taste. My hearing is also very well to the point I can hear electricity flowing through walls. Touch has also become more sensitive especially when I lived in California before earthquakes hit!
Re: Going BlindPosted by hbuck777 on 8/11/2012 at 1:03 PM
My 82 yr old mother has just gone blind from diabetes and I didn't know if I should incourage her to take brail courses or should I get audio books? Will she be able to cook once she gets to know her kitchen well enough? She went from seeing some to seeing nothing in 3 days. Any advice would be very welcomed. Thank you, Holly
Re: Going BlindPosted by BatEars on 8/17/2012 at 12:05 AM
Thank you all so much for your helpful feedback!
In response to hbuck777, I suppose those questions are highly subjective. If your mother has an interest in learning braille (I have an interest in all languages) then sure, encourage away. Something I have found with my family though, is that there is a fine line between being encouraging and being pushy. I love them dearly, but as we are all learning to adapt to my blindness, which is rapidly getting worse, I occasionally feel smothered. For example, audio books get on my nerves and I have no interest in using them, but my dad loves them and constantly suggests that I do so as well.
I can cook, to some extent, even when I can't see as long as I have taken the time to familiarize myself very well with my work area. I go by feel (for meat doneness and such), smell, and taste. That's certainly not to say that it's easy. Like reading, it's a matter of how much effort and learning a person puts into it. In fact, I've burned myself a fair few times learning my way. It takes more time than I'd like and often sheer stubbornness to get through each new obstacle that pops up, both literally and figuratively.
I'd like to thank everyone again for every encouraging word and piece of advice given! It's nice to know that I'm not alone in my fears and in my triumphs. I'm still working on adjusting, and it is very likely that soon I will be entirely blind, so it means a lot to me to hear from other people in similar positions.
Re: Going BlindPosted by TheBlind.US on 11/17/2012 at 11:08 AM
Ive been losing bits of my sight slowly for 40 years. It is very hard on me.
Donald The Blind Webmaster
The US Blind Resource Directory
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