What would you do with your last ten years of sight?
September 15, 2010 2:33 PM   Subscribe

How can I prepare myself for likelihood of being completely blind by the time I'm 35?

My vision has been slowly worsening for some time now. After months of opthamology appointments, I've finally been diagnosed with a rare degenerative condition affecting my eyes. There are treatments available, but they can only slow, not halt or reverse, the damage.

Medically, things are about as under control as they can be, but psychologically I haven't been able to wrap my mind around it. My vision right now is correctable only to about 20/30. I am having some difficulty even coping with that, having lived until recently with perfect vision. But the real kicker is that, I've been told by my doctors, there is a better than even chance that I will irreversibly lose all vision within the next five to ten years. The condition only affects my eyes, so I still expect to live a full life. I'll just be blind for most of it.

As you might imagine, I have a bunch of questions. I know it's unlikely that any mefites have gone through anything quite like this, but maybe some of you (or someone you know) have had other vision related experiances that share some similarities.

1. What should I be doing to help prepare myself for this future? I've already started listening to books on tape to get used to it. But that seems like such an absurdly tiny thing. Is there even anything i CAN do to prepare?

2. Any tips for living with bad vision in the meantime? I'm still legally able to drive, but it makes me uncomfortable, so I have stopped. I used to play baseball, but I'm pretty sure I won't be able to hit the ball anymore. What do I do to not fret about the things I can no longer do?

3. Should I be widening my support network? The only person I've told about this is my wife. My friends and family know that I've got an eye condition and that my vision is not as good as it used to be. But I haven't told them about how bad the prognosis is. The thing is, if I'm going to have to be The Blind Guy for the rest of my life, I don't want to spend the next ten years as The Going Blind Guy.

4. I want to ask the question that's in the title. But I can't help but thinking that's the wrong way to think about this. Should I have a sighted Bucket List? Or will that just depress me?

5. I'm 27 years old and the father of two young boys. How do I keep myself from burning up inside at the prospect of being a burden on my wife and sons as my condition worsens?

I know that there are Blind and Low Vision support groups, and eventually I will join them. But I'm not ready yet. Please help me get to that point.
posted by anonymous to Health & Fitness (51 answers total) 31 users marked this as a favorite
 
Wow. I have no idea how I would react to such news. Best of luck to you.

Re 1: learn Braille?

Re 4: I think that *is* the right way to look at this. Go see famous paintings, landmarks, natural sights. Stow away memories as though you are packing provisions for a long journey.
posted by kestrel251 at 2:38 PM on September 15, 2010 [1 favorite]


If you don't play a musical instrument, take one (or more than one) up. When your sight goes you won't need it to play.
posted by theodolite at 2:44 PM on September 15, 2010 [11 favorites]


I would suggest that you reach out now to support and advocacy groups for the visually impaired. It looks as though the American Federation for the Blind is the largest in the US. Not only will they be familiar with situations like yours, they'll also be able to get you started now working with resources that will help ease your transition. Good luck!
posted by decathecting at 2:45 PM on September 15, 2010


Sorry, that should be the American Foundation for the Blind.
posted by decathecting at 2:45 PM on September 15, 2010


I'm 27 years old and the father of two young boys. How do I keep myself from burning up inside at the prospect of being a burden on my wife and sons as my condition worsens?

You need to meet some blind people who kick ass. Not to minimize your condition and concerns at all--you're handling this better than I can imagine--but it might help to meet people who are blind, and also extremely independent family men/women with full time jobs, lots of friends, etc. Perhaps a support group for people with your condition would be a start?
posted by availablelight at 2:46 PM on September 15, 2010 [8 favorites]


Also-- guide dogs can make a huge difference, both practically and emotionally. Start familiarizing yourself with the various options now.
posted by availablelight at 2:47 PM on September 15, 2010 [4 favorites]


I would reexamine the notion of you being a "burden" to your loved ones. A professor I had, who was also the Psych Dept. Chair, was almost totally blind (he could see some shadow/light contrasts), and he seemed to be plenty busy and active and independent. He was an academic, he traveled all over the world, and he continued to do research. I don't know his whole story but he was pretty honest with the class about what his life was like, even talking about how sex and sex ed for visually impaired people is unique. This will be challenging for you (understatement, I know) but I doubt you'll become a burden. Visually impaired people continue to do all kinds of stuff... Skiing, teaching, reading, computer stuff, etc.
posted by ShadePlant at 2:50 PM on September 15, 2010 [4 favorites]


Wow.

This hits home HUGE with me, because my mom's in the same shape. Rare fungal disorder (histoplasmosis of the eye), and one of these days, she will be blind, but she's fought and just on sheer stubbornness, she hasn't gone blind, after losing one eye to it, she's damned if the other goes away.

1.) Learn Braille. Mom still hasn't (see stubbornness), but learn it.

2.) Start learning your surroundings. The better that you know what's around you, the more you can 'see'.

3.) Tell the family. Tell employer. Tell anyone that you feel comfortable talking to. Start talking to the State Office of Disability or State Office of the Blind. If you're in KY, MeMail me for a great contact.

4.) Go see things. Big grand things. But also keep watching the little things in life. Those little details will help later.

5.) You do the same thing my mom did with me and my sister. You get em all together, you kiss and love on them every day, you refuse to give up, and you promise to keep working things to your advantage until the last little bit of sight goes away. It's humbling. It's depressing. It's loving. It's a lot of things. But damn, it's the way to do it.

My luck, love, and well wishes are with you. Contact me if you want.

Now to get this dust out of my eye.
posted by deezil at 2:55 PM on September 15, 2010 [3 favorites]


In short: Talk to someone who's been through the experience before you. Talk to Slau.

Slau's a recording artist / engineer and all-round great guy who went through a very similar experience to yours (corneal degredation - I don't remember the exact disease, but it was slow and steady) and is now completely blind. He's also one of the most interesting people I know - he runs a fairly regular podcast, has a huge musical interest and ability, and talks endlessly :-). I am sure that he'd be open to talking to you about his experience, or at the very least be able to point you to resources.

Twitter. Other contact information.

Other people have been through this, and adjusted, even flourished. You can too.
posted by Bora Horza Gobuchul at 2:57 PM on September 15, 2010 [2 favorites]


My uncle has been making television and films for more than 30 years and is losing his vision to glaucoma. Over the last few years he's made a film about it called, aptly enough, Going Blind. The synopsis is interesting and tells some of his story but I think you may find the videos really worth watching.

I know that for my uncle, talking to people with low vision made a profound difference in making his own future less terrifying. People are generally happy to be helpful and to talk about what their lives are like. All of the people in that film are leading very normal lives. I am not being patronizing when I say I don't know any blind people who are a burden.

On a daily basis, learning about the practical changes he could make to his environment has improved his quality of life. What works for your vision loss will be different than other people's but just as an example, all of their floors have been redone to be really light and the edges of the boardwalks at the beach have been painted high reflective orange. Both changes give him more contrast in low light and it helps him be much better oriented to see his feet as clearly as possible.

There are also adaptive technologies like they changed the way their pantry works (it now pulls all the way out with labled shelves), he reads and sends emails in large print format, and he has a normal sized keyboard with much larger letters on each key. I think he learned a lot of these things at Lighthouse. A lot of the technologies used by the vet in the last clip are just cool, like the barcode reader.

I am not trying to minimise what you are facing but I think that if you had a better understanding of what that might actually be like, it might be less overwhelming.
posted by DarlingBri at 2:59 PM on September 15, 2010


For what it's worth, my ex boyfriend lost his vision in his early twenties, a few years before I met him. He still played guitar, painted, surfed, cooked... my point is that the list of things you'll no longer be able to do might be shorter than you think. Also, in the time we were together, I never once thought of him as a burden. There were things that were slightly different - I had to use the ATM for him because he didn't know braille, and I'd sometimes have to guide him in unfamiliar places, but then again, I go to the ATM sometimes for my husband and hold hands with him in public sometimes, so it wasn't that much different.

Don't let your vision (or lack thereof) define you. If you're constantly worrying about the future, you won't be able to fully enjoy these next few years as they are. I'm not saying you won't face any difficulties from this, and you've gotten some good suggestions as to how to make this situation easier, but I can tell you this - people will be more likely to think of you as "the blind guy" if that's how you think of yourself. Keep being you, and if your friends are worth their salt, they'll follow your lead. Best wishes to you.
posted by Ruki at 3:01 PM on September 15, 2010 [1 favorite]


You should check out Jim Knipfel's memoir, Slackjaw. He has retinitis pigmentosa. More of his remarkable writing here.
posted by jocelmeow at 3:03 PM on September 15, 2010 [4 favorites]


Check the echolocation technique. Most blind people use a bit of it; learning to use it in optimal levels can give you a lot of autonomy.
posted by TheGoodBlood at 3:13 PM on September 15, 2010 [1 favorite]


I think there's plenty of time to get used to books on tape later. For now:

- Researching is probably a lot faster when you can see. Search out the resources you think you'll need, find a place to live if you want to settle down, and learn what you don't know. Maybe start learning about text-to-speech software. Try to find a barber/hairdresser you can trust who's younger than you are. That kind of thing.

- Go to Paris, then the Grand Canyon. Pick one and do it this spring. Have an awesome awesome time. Maybe plan an opera-oriented trip to Italy when you'll be more interested in hearing than seeing; you'll have an awesome awesome time then, too.

- Collect mementos that are tactile and sculptural rather than 2-D photos.

- If you've ever been interested in learning to model clay, or turn clay pots, that might be fun. Ditto learning a musical instrument. You might get a faster start learning now, although there's no reason you can't learn later.
posted by amtho at 3:26 PM on September 15, 2010


Learn how to use your computer with a screenreader. The big names are JAWS for Windows, VoiceOver for Mac, and Orca for Linux.
posted by expialidocious at 3:27 PM on September 15, 2010 [5 favorites]


Stow away memories as though you are packing provisions for a long journey.

And write or audio record them in vivid detail. Colors, shadows, tonal variations to scenery, and the like.

I wish you the very best of luck!
posted by jgirl at 3:33 PM on September 15, 2010


Contact your State Office of Disability or State Office of the Blind

Just wanted to second this strongly. You would not believe the resources available for blind people to acquire adaptive technology, receive vocational (second career) training, etc., in order to get you whatever reasonable accommodations you need to continue working.
posted by availablelight at 3:35 PM on September 15, 2010 [4 favorites]


In addition to many of the fine suggestions above, I would begin angling the development of my career towards something that could be accomplished from a home office with modern computer accessories for the blind and screenreader software... Obviously not possible if you do something that's highly hands-on (say, being an electrician), but if it's office/administrative related and involves reading, writing, math, stuff you can do entirely from a desktop workstation that would be good.
posted by thewalrus at 3:36 PM on September 15, 2010 [1 favorite]


Consider getting a hold of screen reader software like JAWS and learn how to use it now. Tell your employer and try out the software at work.

The state office of the blind should have screen reader instructors, it really helps that you already know how to use computers and only need to learn how to navigate with it
posted by birdbone at 3:53 PM on September 15, 2010 [2 favorites]


Learn how to touch type if you already don't know how. Also, you can get training to use a cane. I live near a school for the blind and they train people with low vision by using a mask.
posted by a humble nudibranch at 3:58 PM on September 15, 2010 [1 favorite]


Go through all your old pictures and label them all on the back. Use an acid free pen or a pencil. That's the kind of thing that only you can do and you have to actually see the pictures to be able to label them.

Get yourself completely organized, a place for everything and everything in it's place. The blind people I know who are self-supported are super organized and know where everything is by touch. Also, if you get your family used to picking up after themselves now it will be a habit that they have and not something they have to get used to after you've lost your sight.
posted by TooFewShoes at 4:08 PM on September 15, 2010 [2 favorites]


Check out this movie

Blind people do great things every day. Try not to think of it (or yourself) as a burden.
posted by LZel at 4:26 PM on September 15, 2010


I agree that you won't be a burden. Blind and visually impaired people that I know are like all the other people I know - independent, self-reliant, etc.

Also, braille is actually really quite difficult to learn - you should probably start sooner rather than later, at least for key information.

Computer accessibility is generally not too bad, you can adapt your set up to whatever your current vision is, which should make it more useful to use.

Otherwise, will you need to retrain? Many jobs can be done without sight (and with limited sight), but other jobs will be more difficult or impossible. If you will need to retrain, it might be helpful to think about potential future careers.

Finally, accept help and adaptations if they are useful - you don't have to be superman just because you'll likely have low vision in the future.
posted by plonkee at 4:28 PM on September 15, 2010


If you don't play a musical instrument, take one (or more than one) up. When your sight goes you won't need it to play.

I was going to say this. Not if, say, you've never had any inclination and still don't after the suggestion. But definitely if it is something you've often thought you'd like to get around to doing. A lot of music teachers (except those specifically teaching people to be able to play any new piece simply by reading off the sheet music) spend time nagging their students to stop looking at the instrument/their fingers/cheat sheets and just play without looking. Learning an instrument is one of those things that seems daunting before you start, and then one day it's like the first time you road your bike to the end of the street: "Wheeeee! I'm doing it! This is actually so easy!"
posted by K.P. at 4:33 PM on September 15, 2010


I understand that blind people have a variety of techniques for negotiating the world. Some are obvious like canes and guide dogs, but others aren't so much, such as counting steps between various points to build up a walking map of the environment. You can start now finding out about all those subtle techniques and start practicing them when you're not dependent on them, so that the transition becomes much more smooth. In other words, practicing being blind will both help you later on, and it'll make the transition much less frightening because you'll feel prepared for it.

I think if you asked a blind person whether or not they feel like a burden on their family, you'd get quite an earful. The blind adapt. So will you.
posted by fatbird at 4:36 PM on September 15, 2010


I am assuming you are in the US, so my apologies if you are not. I have recently been following the blind football [US: soccer] leagues which I found out about via the BBC's Ouch! podcast. There are a lot of interesting options out there for social, interactive, even athletic things you can do with low or no vision. I agree, you need to meet some awesome people who are doing neat stuff and who happen to have low or no vision. I know a few in the library world. The National Federation for the Blind has a nice website that tries to help answer some of these questions generally.

If you're not ready to talk to a lot of people about this yet, you may want to go to your local public library [or call your state library system] and see what the world of information can look like to you. You automatically can get any book on tape, not just the ones that are available in the library, but ANY book through a nice built-in loophole to US copyright that allows these books to be recorded so they are available to people who can't see. You can get them mailed to you and you mail them back. It's a great system and it works well. Read more about it at National Library Services for the Blind, a service from the Library of Congress. The library is also likely to have a good understanding of adaptive technology options in your area and can help you prepare yourself technologically for being able to see less and less.

As a sort of personal aside, accessibility in libraries and library web sites is one of the things that is of interest to me. You may find that being a formerly-sighted person who has and continues to use technology, you are in a good position to tell web designers "Hey, your website sucks for blind people! Here is how you might want to make things better" I know I've personally been very happy when people have told me that about my own websites and a lot of us in the accesibility world talk a good game about access but may not know people personally who are technology users and who also can't see. You'd be an asset to many places if you can use technology and talk about your user experience and that sort of thing.

Also, hey: Free white cane! I know this is a sort of goofy aside but I think people look at blindness as being just like their own life but with something missing. I don't mean to be super pollyanna about it, but I really see it as more of a DIFFERENT life, not your own life but lacking something. There are new ways to experience the world and I don't think your family is going to see this as burdensome, but obviously some responsibilities will shift around. Getting started sooner rather than later will only be helpful. Only you know what's going to make you blue and I don't in any way want to minimize the fact that this will be stressful generally, but focusing on practical problem solving and finding resources [I like the Bucket List idea personally] seems to be the least agitating way forward. Best of luck [please let us know if MeFi sucks if you're accessing it via screen reader].
posted by jessamyn at 5:05 PM on September 15, 2010 [3 favorites]


My sight without glasses is 20/800 or so. A few years ago, to avoid Star Wars spoilers in a mall I only sort of knew, I took my glasses off and walked with friends through the mall, across a street, into and out of a Burger King (where I ordered food and paid with cash) and came all the way back through the mall to where I started. Up stairs, across courtyards full of crowded people, etc. It's different but not impossible. I mean, I definitely didn't see any of the posters (or Star Wars stuff hanging from the ceiling in the Burger King) in anything approaching the detail I could with my glasses on; the only reason I could tell my friends from one another is that I knew what colors they were wearing and how tall they were. The coins we use are all different shapes and weights and have different edges - ever wonder why?

One of the blind people I know taught my Russian 101 through 104 classes; an assistant graded our papers and wrote stuff on the board for her. She (and he) were students with me in my Tolstoy class; they were grad students so they read it in Russian - she was blind so she read it in Russian Braille. She took notes on a funky laptop that looked more like a tape recorder. It was cool and strange to 19-year-old me. She was fast with the typing, and there were no printed characters on the keys!

The point being: this is like moving to a foreign country, not like dying. My cousin is deaf; he's not a burden, he's just my cousin, and if you want to talk to him you'd better start cuing or pull out a pen and paper. I think your kids and wife will have a much easier time than you will. The extent to which tempers flare or people feel put upon will remain more or less level - it's just that they'll flare over this instead of a concert someone can't go to or a bag of trash that wasn't taken out. If you want to think about what sorts of experiences you ought to prepare for, I find this link helpful. Definitely start working on Braille; it's really, really hard at first, and it's better to have a picture in your head of the shapes you're trying to learn than, you know, not.

If you say where you live people can help more. I live adjacent to my state's School for the Blind and work near a guide-dog training center, for instance.
posted by SMPA at 5:06 PM on September 15, 2010 [6 favorites]


you might be in an unique position to test new treatments and emerging vision replacement technologies. get in early to become a lab rat and possibly you might never go blind!
posted by spacefire at 5:25 PM on September 15, 2010


Please PM me. I have a book I'd like to send you. It may not help with the practical things but it might help with the emotional side of things.
posted by peanut_mcgillicuty at 5:29 PM on September 15, 2010


Work on your other senses—learning that echolocation technique mentioned above is a good idea, as is getting used to navigating by the sounds, scents, and textures around you. I grew up with a father who eventually became legally blind (I have memories of him being able to drive only when I was very little), and his senses of hearing and smell have become rather acutely developed over the years. He's also suffered from depression over the years, though, probably due in no small part to the difficulties he faces as someone with low vision. Yet he still walks 6-plus miles a day (often along streets with no sidewalk), gardens, does guerilla tree- and flower-planting, reads (with various magnifying devices, large-print books/magazines, and via books on tape, depending on how bad his vision is on any given day), watches a ton of movies (with binoculars from the couch at times), cooks, takes the bus various places...

The frustration of being unable to see (and needing to rely on others, and feeling the loss of various opportunities you might otherwise have had) can be a lot to take, though. One of the best things you can do right now is work on the emotional aspects of your life, making sure your family knows that they're loved and appreciated, regardless of how frightened and frustrated and angry you may be as your sight worsens. You want your wife and your sons on your team—so you need to make sure that you're taking their needs and feelings into consideration, too, as you navigate your increasing disability. At any given point, as things get worse, you may be suffering a lot emotionally—and you have to remember that may have their own frustrations. And that yet, as they get older and more involved in life outside the house, they may not think about your condition all that much at all—or at least not in the same way you do—due to their inherent privilege as sighted individuals.

Remember that while perhaps you won't be able to literally see all of your sons' accomplishments as they grow older, you'll still be there for them, and there are other ways to appreciate the things they're going to achieve in life. When you can't see well, talking will be a lifeline—so make sure you begin opening the lines of communication now.

One thing I've also noticed, walking around without being able to see clearly myself while, say, getting my glasses made or at the pool (so I couldn't accurately meet others' gazes), is how much emotional communication takes place nonverbally, through quick glances. When I was walking around while having glasses made recently, for instance, I stopped at a restaurant to get a cup of soda—and when I told the woman at the counter that I was getting glasses made and couldn't see well, she first offered me a menu to look at up close, then, when I said I just wanted a soda, gave me a cup for free, even though I reached for my wallet and told her I could pay. And that was just me fumbling around nearsighted—I know my father has experienced all manner of strange reactions from people, ranging from pity to attempted helpfulness to disdain. Some people just don't know what to make of someone who can't see well, whereas other people may try to take advantage of you, give you incorrect change, etc. (one good thing to begin learning right now would be how to distinguish U.S. coins, at least, by touch, and develop a system of organizing paper money in your wallet such that you know which denominations are which).

Also, my father often wears sunglasses, both because of light sensitivity and to hide the appearance of his eyes. Depending on the specifics of you condition, that's something you may choose to do at some point, too. What I've noticed recently, wearing sunglasses regularly myself for the first time in my life, is how that changes social interactions. When others can't meet your gaze, they can't tell where you're looking or gauge your emotions as well—so they often instinctively tend to distrust you. And conversely, when you know others can't see where you're looking or gauge your emotions as well, you may find yourself starting to react differently—less empathetically, for one thing. So you know how they often tell people to smile when they're talking on the phone, in order to sound more sincere? The physical act of smiling completely changes the tone of the interaction, and that produces a social feedback loop of sorts—you smile, they smile, you both laugh, and you're having a great time on the phone. The point is, even though you ultimately might not be able to see and react to others' facial expressions the same way you do now, you should try to continue to "project" your emotions with your expressions and your voice, even when you can't see others' reactions and may feel like there isn't a point in doing so. Once you can't see the other party in the conversation, it's going to be a lot like talking on the phone—to everyone.

Finally, something to realize and accept now, before it happens: Given that your kids are going to hit their teenage years just at the point where your sight is getting really bad, hijinks most likely will ensue, no matter how sweet they are. They will probably do things like silently roll their eyes at each other across the table, knowing you can't see their expressions. They may try to pull a fast one on you from time to time—not necessarily because they're trying to be cruel to their blind father, but because that's what teenagers do. I'm not telling you this to make you feel worse, but rather so you know, and also to illustrate a point: There will be a lot about your situation that you may not be able to control. You can't control how others will react to your disability. But you also can't see them rolling their eyes or what have you (though you'll probably develop a sort of sixth sense for when they are).

Basically, some aspects of what you're about to experience may feel like being in school with a bunch of immature kids, because as empathetic as those around you may try to be, most of them won't necessarily understand all aspects of what you're going through or what accommodations you need. And other aspects of it will be like being in a workplace where you know everyone's secretly talking about you behind your back—the best thing you can do is hold your head up, be businesslike and direct, and move forward with confidence that whatever they're talking about, it's their problem, not yours.

I know the news of your condition probably felt pretty devastating. Good for you for asking this question and starting to figure out your feelings about all of it—and more practically, what to do about it all—now, rather than waiting.
posted by limeonaire at 5:30 PM on September 15, 2010 [3 favorites]


Wow. I'm so sorry. You may want to consider talking to someone to help you with any anger issues that come up, although that may be pure projection on my part, because I would be angry. In the meantime, were it me, I would travel to every museum I've ever wanted to see, or have seen and love. I love art so much, that I would want to burn it into my mind.

However, one of the grooviest people in my life growing up, was blind from his 20s. It never slowed him down a bit. Some of the best stories from my childhood involve Mike. Mike and the $500 dollar duck; because he fired a gun into the air during deer season and brought down a duck. (Mike went hunting with my dad and friends every year.) Mike and the Jeep on the beach, Mike sailing the boat to the Bahamas. Frankly, Mike did more and had better stories than any other member of my parent's circle.

As well, he's a leader in his industry, knows more about his expert areas than anyone, and I pity the fool that ever pitied Mike.

Learn braille, find support groups, talk about it with your wife and kids and maybe a trained counselor, but remember that your sight isn't what makes you...you.
posted by SecretAgentSockpuppet at 5:33 PM on September 15, 2010


If you don't already live in one, move to a major metro area with real public transportation. Nothing like being totally dependent on others for transportation to really feel helpless. Move someplace with plenty of buses and trains so you can go wherever the hell you want, whenever the hell you want.
posted by toodleydoodley at 5:43 PM on September 15, 2010 [2 favorites]


Contact the mods and have them update the thread with your location. People want to help you!
posted by John Cohen at 5:52 PM on September 15, 2010


I can't offer specific suggestions for preparing for blindness. I will say in college I knew two people who were blind, one who had gone blind as a young adult as the result of a medical condition (never knew the details), the other who I believe was born blind. In my interactions with them I was actually shocked by how little a difference it seemed to make in their daily lives. They knew who I was when I walked up to them and said hi. They wrote papers and made presentations in class. They walked around campus and took the bus. They lived in two-story houses and wore matching socks. I drove one friend home and as we were driving he told me where to turn! That blew me away. I assume that something like that you learn over time, possibly only after you lose your sight, but the point is, I don't think you're inevitably going to burden your family.

I once asked one of the friends if/what he felt he missed out on, and he said driving. You said you're uncomfortable driving. Maybe you should plan an epic road trip with your family. You drive if/when you feel comfortable. You see all the great sights and store them in your memory. Your family does too.

You might also try to tune in more spatially and learn your environment (assuming you think you'll stay in this environment). How long does a mile feel when you're walking versus driving? How steep is the step on to the bus? How much do you duck your head when you get into a car? How far from your keyboard is your coffee mug? In which drawer do your kids keep their pj's?
posted by kochenta at 7:25 PM on September 15, 2010 [1 favorite]


I have something to say about your not wanting to be "Going Blind Guy" for 10 years. Well, I hate to say it, but... you ARE gonna be that guy for ten years, whether other people know it or not. If you're thinking along the lines of, "I'm gonna hide it for as long as I can so people don't pity me," well, the joy of degeneration is that eventually you won't be able to fake it any more. I'm thinking of my neighbor the other week saying, "So I decided one day to pretend that I didn't have my disease... it didn't go well." So I'm thinking, don't pretend that everything's fine. Tell people. Putting up the facade is wearing after awhile, not to mention faking it at a certain point.

I think the "sighted bucket list" is an excellent idea, actually. Mostly because in 10-15 years, if you didn't do the SBL, you'd probably regret not doing it because you had attitude about such a thing.

Other than that, I'd learn how to be blind now so you can kind of gentle your way into dealing with it and will know what to do when the time comes. Start on that Braille. Talk to the Guide Dogs folks about when it would be appropriate to start training. Figure out how you're going to continue to be able to work. Do you need to change fields entirely and need 10 years to work that out, or can adaptations be made? Can you start practicing with those adaptations now?

Oh, hey, interesting book on this subject (well, it talks about it anyway): Between, Georgia (Joshilyn Jackson) features one character who is deaf and blind due to Usher's syndrome. She was deaf all along, but lost her sight later on in life, and the book does talk about how she chose to deal with the situation, at what point she went to blindness training, etc. And Stacia is still a freaking badass.
posted by jenfullmoon at 7:56 PM on September 15, 2010


LZel: "Check out this movie"

The blind climber from that movie, Erik Weihenmayer, has also written a memoir called Touch the Top of the World (link). A lot of it is about climbing, but parts of it are about the years when he was losing his sight, and how he learned to cope (e.g., developing systems for matching his socks, etc.).
posted by Blue Jello Elf at 7:59 PM on September 15, 2010 [1 favorite]


the thought of being a burden on my wife and boys

The answer to this is: just do the normal things you would do to be a good dad. My dad had a pretty serious handicap while I was growing up, and although it meant there were some things we couldn't do together, we just did a lot of other things together and had a great time. I never thought less of him, never thought of him as a burden. He's Dad, he's the greatest.

So - be adaptable and fun, consistent in discipline/attitude, be kind to your kids, and you're golden. They'll love you for what you are and can do, they'll get snotty about some things like all kids do, and it will probably never even occur to them until they're older that it was unusual. Then they'll think "my dad was an amazing role model; he faced a tough situation with good humor and tenacity, and I never even realized it while we were growing up".
posted by LobsterMitten at 8:25 PM on September 15, 2010


In addition to toodleydoodley's suggestion of moving to a city with good public transportation, strongly consider living in a neighborhood with a high (75+) walk score -- so you and your whole family can walk to grocery stores, restaurants, doctors, parks, drugstores, etc., and ideally your children's schools. Your family might not even need a car.

(And note that the current governor of New York is functionally blind.)
posted by lisa g at 8:41 PM on September 15, 2010 [1 favorite]


Hi there - I've been a lurker for 5+ years and your question finally tipped me over the edge.
A little over 6 years ago (age 30) I lost the vision in my left eye over the course of about 5 months due to idiopathic subretinal neovascularization. Basically, I have something similar to age related macular degeneration and the treatment is about the same. The doctors can't tell me when the other eye will go, but it's almost a certainty that I will be blind at a fairly young age. As you can well imagine, I freaked-the-fuck-out.
The first thing I did was go into complete panic mode. I could not picture how I would cope with being blind. I am such a complete control freak which certainly didn't /doesn't help matters. I started thinking about all of the people I would have to rely on -omg, I have to trust that the salesperson is selling me a plain blue top and not a dayglo orange plaid top! And that was not the most minute thing I obsessed about. It was a horrible panic-y year or so before I started to get my act together.
I've got to ask, why on earth have you given up driving so soon? I'm corrected to 20/40 in my ONE eye and I drive all the time! I suspect it's some sort of doomsday thinking on your part - believing you have to adjust to your 'new' life. Your life today isn't any different than it was yesterday- you just have more information. I made the Things I Must See List too, and I haven't marked one damn thing off that list. And you know what? I don't even care. I'm too busy living now, not worrying about what is going to happen ten years from now. Please go talk to a professional to help you get through your initial fear and depression. It really helps.
Other commenters have recommended some great things. Go meet some blind folks, go meet some low vision folks - you'll be amazed at how open most people are about how they experience life. Go investigate all of the tools and aids that are available to low vision and partially sighted people. I was AMAZED at some of the stuff out there. Learning that blind people cook was a huge relief for me. Sounds so stupid, but it's the thought of not being able to do the little things that instills such fear.Sadly, you'll find very few actual resources for the still sighted. All of the funding goes to people who are actually severely low vision or blind. Be prepared to pay out of pocket for a Braille class (it is easier to learn Braille when you are still sighted, screw audio books for now). It never made any sense to me why I'd have to wait until I was blind to get assistance in learning Braille. Teach me before it happens so that I am more able when it does!
Start researching career paths that are suitable for you going forward and work towards the retraining you need now. During my research I found that Charlotte, NC was rated by one organization as the best place for the blind to live - great public transport, lots of blind friendly jobs and tons of community resources. I'm not sure if things have changed since then, but it's something to look into. Set yourself up to succeed as far as is possible without obsessing over your impending blindness.
Friend, you have received such a blessing. You now FULLY understand that you have to treasure the beauty in the world. You will never take for granted the smile on your child's face. You also have the gift of time. You have the time to prepare for this that many, many people do not get. As I said, it took me about a year to work through the mind numbing fear and depression, but these days I rarely think about it. Since my (non)diagnosis I've gotten married and have had two beautiful children - I refuse to stop living my life just because there's a someday lurking over my head. Please memail me - I'll be happy to listen.
And please, people, if I happen to mention that I'm blind in one eye do not "poor dear" me. It makes me want to smack you.
posted by PorcineWithMe at 8:43 PM on September 15, 2010 [10 favorites]


My husband's paternal grandparents were both legally blind from birth (for different reasons) and met in a special New York City high school for the blind and low-sighted in the late 1930's and 1940's. They married, had two kids and five grandkids, the husband ran an art supply company, and generally had a pretty normal life. The fact that they lived in a city where they could rely on public transportation --subways and buses, rather than driving -- was a huge help to them. On the other hand, because the grandfather could not join the armed forces during WWII, he did not get to benefit from the many GI benefits that other men his age received, including post-war housing priorities and such. Another side effect of her blindness is that the grandmother has lived attached at the hip to her portable radio for many decades now, and it led to her becoming a hard-core Mets fan since day one (and a Giants fan before that), since she could listen to and follow the games being narrated without having to depend on her eyesight. This in turn led to her sons (and later her grandkids) becoming huge baseball fans themselves, since she actually listened to every game and even kept score for them while they were in school as kids. One of those kids grew up to write some pretty famous baseball movies, as well as other films that had significant baseball storylines.

One of my college roommates was legally blind from birth due to a genetic condition, and is headed for full-on blindness in the next few years, if she's not there yet. She was (supposedly) the first person from her entire county in rural Virginia to go to an Ivy League school, and now she's a lawyer in New York. Virginia paid for her to get a brand new computer (with massive screen) and printer/scanner every two years, so that she could scan her text books and either have them hugely magnified on screen, or sometimes read aloud to her through OCR.

And my toddler son is seeing a pediatric specialist optometrist here in Los Angeles next week, to deal with his suspected neurological-origin vision issues (possible double vision, low peripheral vision and proprioception issues, possibly due to cortical involvement). The optometrist who was strongly recommended to us is named Dr. Bill Takeshita, and he was for a long time an optometrist specializing in low-vision children who, coincidentally and ironically, went blind himself several years ago. And yes, obviously he's still working (with an assistant for some things) and still top in his field in Los Angeles. In fact, the only other name we heard recommended for a doctor who could help on the same level as him lives in New York.

So, I'm really sorry that you got stuck with a shitty diagnosis, but this isn't exactly a death sentence here. Your life will change a lot, but maybe not quite as much as you're assuming. And you're lucky in the sense that you have a good decade or more to get prepared and really adapt your lifestyle. There is no reason to believe that you will be a burden in any way to your family -- as long as you take the time you've been given to work on solutions and adaptations, rather than moping.
posted by Asparagirl at 9:05 PM on September 15, 2010


One way to not fret about things you can no longer do is to replace them with things that you still can do. One thing you don't have to give up is bicycling. You can ride a tandem with your wife (or a good friend who digs biking) as captain. Bike rides make for great family excursions, too.
posted by aniola at 9:44 PM on September 15, 2010


I am legally blind without my glasses and no one knew for the first half of my life. (I got glasses and am now corrected to close to normal, but I spent all of school not being able to see. I didn't know that trees had leaves.) So, I'm speaking from the reverse of what you are facing.

Two things to begin practicing now:
1) Start counting your steps. You will need to know how many steps to the bathroom, how many to the corner, how many to the end of your driveway, how many in the hallway, etc. etc. If you get used to counting steps, it's not so bad. It gives you a lot of freedom in your own house and immediate surroundings, even free from aids like a white cane. Begin stressing now that nothing may ever ever be left on the floor because you will step on it and it will hurt - either from the stepping or the falling. This can be a hard thing to train people to do, particularly if they're young or it's a big habit.

2) Train yourself to start putting everything away as soon as you stop using it. Once you put something down, it's lost and gone forever. OK, not really. But sort of. Do start putting things away. It becomes exponentially harder to "look" for things once you are using your hands to feel every single surface you could possibly have put it on. Since I have entered the world of the sighted, my housekeeping skills have degraded significantly because I can now look for things.

In regards to your question about fretting over the things you won't be able to do and broader thoughts about being blind:

Start replacing those things now. You won't miss things if you have new interests and loves in your life. You'll look back on them with a certain melancholy, but not with sharp sadness and intense awful consuming loss. If you're into sports, there are plenty that blind people are successful at! Swimming, hiking, indoor rock climbing, archery, etc. There's even a Blind Sports Organization. Many of the things you love now you won't have to give up at all. For instance - maybe you can't play baseball like you used to, but you sure as hell can play t-ball! If you like the arts, you won't lose any appreciation for music and fine food! Picking up pottery and sculpture with clay is awesome.

In fact, there are many things that will be so much greater when you're not distracted by sight. Going to concerts is thrilling because the music takes up every bit of your body. Cooking is wonderful because you can become so much more engrossed in the textures, tastes and smells of what you're doing. Going to the beach is a sensory explosion! You will be gaining so many things that you can't even imagine. The whole world is full of things people are too distracted to notice. The way different insects sound when they fly. The way grass sounds when people walk on it. How different people sound when they walk. What words printed on paper feel like under your fingers. The way water feels on your scalp.

The world is unimaginably full of things you will be gaining. Your other senses pick up the slack. They really do. I know it sounds like a cliche, but I've been on both sides of the fence. I wouldn't have enjoyed going to the Louvre when I was blind. But I also know I don't enjoy most of life as much now. I'm easily distracted by the details and my sight takes up way too much of my attention. I've forgotten that the best thing about roses is the velvety feel of the petals, because I use my eyes too much. I spend a lot of time not wearing my glasses. I know it's a luxury to have that choice, but I want you to know that being able to see doesn't always come out on top. There's a price people pay for seeing, even if they don't know it.
posted by stoneweaver at 10:16 PM on September 15, 2010 [4 favorites]


Also, because you're thinking and preparing for it now, you won't be a burden to your family. You will just transition your role. Plenty of blind people live on their own with all kinds of independence.
posted by stoneweaver at 10:16 PM on September 15, 2010


The neurologist Oliver Sacks (who has had his own recent troubles with vision) often discusses blindness with reference to the work of John Hull, whose memoir Touching the Rock is a fascinating discussion of the process of going blind. Sacks' work has brought him into contact with many people who have gone blind; while some retain incredibly vivid visual memories, and retain an ability to picture things quite precisely in their mind's eye despite their physical blindness, others, like Hull, gradually lose their ability to conceive of things visually over time. It might help to read different memoirs, inasmuch as Sack's theorizes that the strength of the individual's desire to preserve visual memory may help one to do so....
posted by Diablevert at 3:29 AM on September 16, 2010 [1 favorite]


If you're acclimatising yourself to audiobooks, you might want to start getting used to audio-described movies too.
posted by the latin mouse at 4:55 AM on September 16, 2010


I don't have the time to go find it now, but I can remember reading at least one cool thread in Ask/Tell on SomethingAwful about being blind. It was really interesting and might be useful to you.
posted by Aizkolari at 5:00 AM on September 16, 2010


My dad went blind from diabetes when I was six months old so I grew up with a blind father (he died when I was 15). It was an interesting experience that I think shaped me in lots of ways.

Anecdotal data for you:

To your question, though, my dad was fearless - he rode buses, went on job interviews etc. all at a time when there were no special accomodations for handicapped individuals as there are now. His hearing was, as you'd expect, very acute and he really did all the things that he did before he was blind (except drive, which was a good thing!). Most people around him forgot he was blind (he was dancnig with my aunt at a club and she saw someone she knew and ran over to them forgetting that my dad couldn't see her do that - left him right out there on the dance floor alone! LOL). What carried him through was his ability to see the humor in things and situations, ask for help as needed and enjoy the heightened senses he acquired.

I wish you much luck - I know I'd be sad to lose my sight but at least you have the time to prepare yourself for it.
posted by Mysticalchick at 5:55 AM on September 16, 2010 [1 favorite]


You might want to read up on the artist John Totleben. A comics artist who was widely admired for his insanely detailed and fine pencil work and inking, he dropped out of sight for many years and it was only later I read that he was diagnosed with retinitis pigmentosa. Despite being legally blind, he still does art using what's left of his central vision.

Best wishes to you and your family.
posted by benzenedream at 10:32 AM on September 16, 2010


Please don't think that blindness for you is a foregone conclusion. You may hate this simplistic advice but Don't go there until it actually happens.

As one who has a huge list of ocular disorders and diagnoses, I can tell you that these sort of things don't always end in black, dark blindness. Even if the diagnosis is for a disorder that typically results in complete vision loss, they simply don't always. Although your vision will deteriorate, there is a great chance that you will still retain some teeny bit, if not much visual capacity.

There will be visually be a somewhat psychedelic middle ground that you will have to live though during the deterioration process. If you are lucky whatever condition you have may never get further than that. You are probably already there if it is affecting your driving.

I would absorb as many photons as I possibly could off of my child. Maybe even make a life-sized sculpture of her so I could be physically reminded of her size when she was little.
posted by No Shmoobles at 10:50 AM on September 16, 2010 [1 favorite]


Have you thought about seeing an occupational therapist? They can be truly amazing. My grandmother has retinitis pigmentosa and faced a similar situation, but that was back in the 1950s. She coped, and raised four kids single handedly. Nowadays, you're probably going to have a bit more luck.
I don't know what it's like where you are, but in Australia, an OT can visit your house and help you prepare it for the kind of conditions you'll be experiencing.

They will help you consider things like: putting raised buttons on your microwave and markers on your oven temperatures so you can still cook. Ditto for washing machine, stereo, keys etc.
Buttons in various inside seams of your clothing so you can tell what colour it is (ie, single button on left hand inside seam of shirt = black, on right hand side = navy).
Organising your pantry and fridge.
Arranging furniture to allow easier passage w/o vision.
Learning to use text-to-speech equipment properly.
Learning to be guided by others if required, and to use a cane.

FWIW, I learned braille and did some white cane training because I (having always had very poor sight) was certain I would also go blind. Luckily for me, genetic testing shows I don't carry the retinitis pigmentosa gene but I have seen my grandma and her siblings live through blindness. If you want to talk, please MeMail me.
posted by indienial at 5:06 AM on September 19, 2010 [1 favorite]


Canadian writer Ryan Knighton has just published his second book about blindness; this one is about fatherhood, called C’mon Papa: Dispatches from a Dad in the Dark. His first book was a memoir called Cockeyed and both are excellent.
posted by jokeefe at 8:10 PM on September 27, 2010 [2 favorites]


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