How do I best prepare for my imminent blindness?
October 29, 2010 6:55 PM   Subscribe

I am already blind in one eye, and blindness is slowly progressing in the other eye. I can still see, but I'd like some tips on how to prepare myself for total blindness.

Reading is a very important part of my life, and soon I am not going to be able to read anymore. That and a host of other things - drive, jog, etc. I need to start preparing for something that will probably be final in a couple of years. Is there a good way to learn Braille? What else should I be doing? I would also appreciate anecdotes from blind mefi-ers about how they cope on the internet (all my work is internet based). Preferably, I would like to hear stories from people who lost their sight after being sighted, although I would love to hear from anyone with any experience and tips.
I am not in a pity party, I'm really not. I am a planner by nature, and I just want to plan and be prepared as much as I can for the day that comes, and it is coming, so I may best navigate my new world the best I can.
I actually think that I have been pretty lucky. I lost sight in one eye, and the other eye's degeneration is slow enough that I have time to get ready for it, so mefites! School me.
Anonymous, obviously, because I have IRL friends who read metafilter and I haven't talked to them about this yet.
Thanks in advance.
posted by anonymous to Health & Fitness (20 answers total) 14 users marked this as a favorite
Have you seen this question?
posted by amro at 6:58 PM on October 29, 2010 [1 favorite]

Also, I'm sorry you have to deal with this.
posted by amro at 7:11 PM on October 29, 2010

You may want to contact Lighthouse International. They can help you with all kinds of skills from household and work tasks to learning Braille and mobility training.
posted by DarlingBri at 7:12 PM on October 29, 2010 [1 favorite]

In amro's link there, read my response. And if by chance you have histoplasmosis of the eye... definitely get hold of me.
posted by deezil at 7:15 PM on October 29, 2010 [1 favorite]

I have no experience with blindness. However, I have experience with debilitating illness (not myself, but a family member) and experience with tragedy. In any situation where our life experience doesn't prepare us to deal with an unknown, I've found that being involved with a solid support group is priceless. Being able to talk to others that share the experience has been a critical factor in the "dealing with" area.

I hope you find some ideas here on metafilter, but I encourage you to seek out IRL groups that can support you through this.

be strong and.... peace...
posted by HuronBob at 7:16 PM on October 29, 2010

This might sound stupid, but have you practiced with a patch over your good eye? Spend an hour, a day, whatever, getting used to it, so when you trip over that curb or knock over that coffee cup, you can lift the patch now and gauge things a bit.

Also, as HuronBob says, a support network might be a good thing to find now, while you still have your full researching abilities. Getting in touch with people who went through the sighted>unsighted experience might be a better than asking here, where a bunch of sighted people are going to give you guesses.

If you do find such a support group, those people can probably tell you what they wished they had done.
posted by luke1249 at 7:36 PM on October 29, 2010

My blind friend uses a screen reader for his laptop that I personally find quite confusing. I'm sure it doesn't take too long to get used to it, but it might still be easier to adapt while you still have sight as well. So yeah, start using accessibility technology on your computer, phone, music player, etc, and you'll be well set up in that field.
posted by lollusc at 7:53 PM on October 29, 2010 [1 favorite]

Here is an interesting article about an architect who went blind.
posted by mareli at 7:59 PM on October 29, 2010

My stepfather has retinitis pigmentosa and has become progressively blinder in the time that I have known him. When I first met him, about 25 years ago, he could distinguish between light and shadow, identify bright colors, and make out general shapes (e.g., he could tell that I had brown hair and was wearing a purple sweater and was walking toward him). He is now completely blind. I don't have any advice about how to cope emotionally with blindness, but I can offer some suggestions about how to deal with it practically. Such as:

In the kitchen, put all sharp objects (knives, scissors, pizza cutters, etc.) in one drawer, and all dull objects (mixing spoons, ladles, measuring cups and spoons) in a different drawer.

In the refrigerator, decide where certain staples will "live," and make sure when you take them out, you put them back in the same spot. This avoids unpleasantness such as pouring orange juice on one's cereal, for instance.

Keep the floors and tables clear of clutter. Push chairs back under the table when you are done sitting in them.

Get a phone with talking caller ID.

Take advantage of the National Library Service for the Blind and Physically Handicapped. When I was living at home my stepfather got books on tape, but I don't know whether they are available in CD or digital format now -- it's been awhile since I lived at home. He is still a voracious reader.

Consider software that will 'read' the computer screen to you. The one I know about is called JAWS, but there may be others now. As I said, it's been awhile since I lived with a visually impaired person.

Your state or county may have agencies that offer services to the blind, particularly offering help to folks adjusting to their situation, similar to Lighthouse International. You might also consider getting in touch with either the American Federation of the Blind or the National Federation for the Blind to identify other services or resources that can help you. These may also help you find out the best way to learn braille; my stepdad was taught braille by his older sister, who is also blind and self-taught.

Apologies to you if you have already implemented some or all of these suggestions; they are just what came immediately to mind, and I don't know if they are what you were looking for in your question. Feel free to MeMail me if you like.

Hang in there. You can live a satisfying and independent life as a visually impaired person. Promise.
posted by That's Numberwang! at 8:26 PM on October 29, 2010 [6 favorites]

A few years ago there was an amazing thread on the Something Awful forums started by a member there who has been blind since birth. He goes into some pretty good detail about his computer/internet setup (no monitor!). I think you could find a lot of useful information there.
posted by makonan at 8:37 PM on October 29, 2010 [1 favorite]

I don't know if I would pretend to be blind by covering my good eye. My sister is blind in one eye and she is very afraid of doing anything that might harm her remaining sight. (e.g. she's very worried by people who throw things to her at the office) I'd be worried I would bump into something sharp and harm my good eye.
posted by bottlebrushtree at 8:45 PM on October 29, 2010

Have you seen this post about how an iPhone can let the blind see color? Sounds pretty exciting.
posted by Corvid at 9:02 PM on October 29, 2010 [1 favorite]

If you have the resources (financial) to be able to do so, you might seek out a referral to an Occupational Therapist. OTs (and OT Assistants, which is 1/2 of my current diploma program) can help you work out compensatory techniques/suggest assistive devices/maximize your current functioning for as long as possible for just about all "activities of daily living".

Here is a fact sheet about OT services for individuals with visual impairment, from the American Occupational Therapy Association (AOTA).

Best of luck with everything, anon.
posted by purlgurly at 9:04 PM on October 29, 2010

There are a few other posts about computer selection at the site that Corvid linked to. According to the author, the native Max OS X accessibility options are very good out of the box. No extra software needed. Apple generally pays careful attention to user interface, and that extends to accessibility for the visually impaired.
posted by centerweight at 9:45 PM on October 29, 2010

I don't know where you are, Anon, but you should hit Google and look for a local center for the partially sighted. They can hook you up with adaptive technologies, walk you through common situations you might encounter, and provide counseling to help you prepare and adjust.

(When my issue went from "oh, my left eye is shit" to "oh, well, my left eye is shit AND now my right eye wants to try it too," my local CPS was immensely helpful in helping me screw my head on straight and cope. My situation is not yours, and I can't fully empathize, but I know how much eye stuff sucks.)
posted by fairytale of los angeles at 10:21 PM on October 29, 2010 [1 favorite]

No resources, but just wanted to reassure you that you are going to be fine on the Internet, there're a lot of blind geeks out there kicking your (my) ass in multiplayer games. Drop me a mefi mail if you want me to try hook you up for a chat with one.
posted by Iteki at 12:24 AM on October 30, 2010 [1 favorite]

My mother-in-law moved near us recently and since she has very low vision thanks to macular degeneration we explored local resources. For her, the medical services could do nothing useful - no fix - but the Occupational Therapy services available through the Kellogg Eye Clinic at the University of Michigan came up with a number of useful devices enabling her to read and watch television. Different kind of vision loss than it sounds like you're experiencing but there are technological tools out there that can help. Depending on where you are there may be a range of possible services through county, non-profit, eye-care etc. You might find a social work affiliated with one of these organizations who can help you find what's out there locally and on the net that's useful to you.
posted by leslies at 6:17 AM on October 30, 2010

I'm not blind, but I'm sort of the default technical support person at work, and my friend who works one office over from mine is blind. Start playing with JAWS (or whatever text-to-speech software device you eventually plan on using) as soon as possible, so that when you inevitably run into software conflicts, you already have a leg up on how to fix them. In particular, get used to navigating the Internet by sound instead of sight.
posted by infinitywaltz at 8:35 AM on October 30, 2010

I am NOT qualified to answer this question. I am not blind and don't know anyone else that is so I feel a little embarrassed piping up but here I go.
Fashion and clothes have never been important to me except to NOT stand out. I like plain black T-shirts and comfy shoes. But something I've always wondered about is HOW blind people decide what they like/want to wear.
If I knew I was no longer going to be sighted I would want a clothes plan. Maybe I would take pictures of myself in what I feel most comfortable in, clothes I like, style of shoes I feel comfortable in. I would put them in an album because I suppose someday someone is going to have to help me shop if I need something. I suppose shoes are easy to buy a few extra pair of now. Easier to shop now and most shoes just keep for a long, long time.
And as for clothes, maybe get 2 of something if you find something you love.
I have had plain, classic clothes for 20 years that I am sure will last longer.
If I never had to shop again (IF i didn't keeping gaining a few pounds here and there I wouldn't) I'd be glad. So for me stocking up clothes I knew I felt comfortable in would be on my list.
Maye even a few dressy things for things like weddings and wakes (because thats about the only time I dress up) so I knew I had something.
I'm sorry if my response seems shallow or silly considering the issues you may face in the future. I wish you the best of luck.
posted by beccaj at 6:34 PM on October 30, 2010

Speaking of clothes: I had a friend who was completely blind. I asked her how she managed not to end up with clothing that clashed. She told me all her clothes had a tactile tag that told her what color they were & if the were plain or patterned. Also, give some thought to emergency exit procedures from your house. You probably already know the layout of your home pretty well, but how well would you improvise in a fire emergency? Her planned improv was to go out the window. No one had told her it was directly over a stairwell and that there was chickenwire outside the glass. Perhaps it sounds a little melodramatic, but get these details sorted out before a Worst Case Scenario crops up (God forbid).
posted by Ys at 6:47 PM on November 15, 2010

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