Category: Tips for living with low vision

Life Isn’t Fair

In case you have not noticed, I have a great life. I was at a concert on Sunday and my husband took me to ski on Monday. That was the second time for the season. Sometimes I wonder how I merit a life as ‘charmed’ as the one I have. I look at people who are no less deserving than I am and they are having awful problems. There but for the grace of God go I.

Therefore I feel a bit spoiled and ungrateful when I get resentful. It is always the little things, too, and that makes me feel more guilty. I am dealing with NOTHING compared to others. Why am I so pissed off?

Today I was at a conference. I was the first one there and the last one to leave. I had gotten transportation and was dependent upon their schedule.

Sitting alone and waiting, I got resentful. Why do I have to be the only one left? Why can’t I just get in my car and go?

The online dictionary gives the definition of resentment as “bitter indignation at being treated unfairly”. Hmmmm. How many times have I told someone life is not fair but here I am. I am entertaining an emotion based on exactly that expectation! Life is so much fun when your own words come back and bite you in the butt!

Why should I be exempt from the vagrancies of fate? As much as I like to think I am special, I am not (probably ?). God makes the rain to fall on the just and the unjust, etc, etc. Expecting special treatment is unrealistic.

Still do it, though. Probably should stop it. Being resentful is not going to change my situation. I cannot drive. I would kill someone. It is what it is and I need to accept that.

Being angry about what cannot be changed just makes you and everyone else miserable.

Besides, waiting a little longer was not THAT big a deal. I got to go to the conference. My goal was to get continuing education credits and I did that. I was effective in that respect.

The real problem probably wasn’t being the last one left there. Truth of the matter may be the resentment came from somewhere else. How about the feeling of powerlessness? Maybe feelings of being deserted?

I was not either one of those. Technically, the venue for this conference was only about four miles away from the house. I had on sensible shoes. I could have walked home! Still felt sort of powerless. Sort of deserted even if I wasn’t.

So, there you go. Even when things are going well, sometimes something reminds you that once they were better. Resent my vision loss sometimes? Hell, yes! But it won’t help. It is what it is and no, life is not fair. Get over it, girl. Continue reading “Life Isn’t Fair”

Low Vision Pet Peeves

Hey! Pet peeves about low vision. I just spent 10 minutes looking for something that was in the first place I had looked. Poor contrast. What are your pet peeves?

I found someone who is blind – as opposed to low vision –  who had written his pet peeves with sighted people and posted it online. Now as a former, fully sighted person, I have to be a little defensive about some things on the his list. Things like extending a hand to shake are pretty much habit. Being afraid to say something like “ya see what I mean?” is trying to be P.C. It is not not trying. It is trying too hard.

I agree with him that people asking if you want to feel their faces is just plain weird. Fortunately that one has not happened to me. I also agree that games like “tease the blind guy” are cruel and should merit corporal punishment. Likewise, I agree we are losing our sight and not our hearing or out wits. People don’t have to shout or use single syllable words. (In fact we just met a retired lawyer, well into his 80s, at a concert. I believed he enjoyed my friend and me immensely. Why? Because when he verbally drew his sword, we drew our own and parried. As a former trial lawyer, he misses the good fight.

I don’t need good vision to ‘sword fight’ like that. It was a hoot! Low vision does not mean no brains!)

I am with the pet peeves guy on people who just come up and start talking. Happened yesterday at yoga. She just came up and started talking. I blurted out “I can’t see you.” No sorry or by your leave. Just came out. I thought I was a bit rude. Did not mean to be, but it happened. Turns out I do know her and she knows I am low vision. I’ll put the blame on her.? Could never be my fault! ?

The one peeve I have seen on other lists about the sighted (apparently sighted people are horrible. I never realized that when I was fully sighted) and appeared here as well was pity.  I will agree with that.  People who tell me they would rather have their painful illness than my vision loss because my life must be horrible get me.

A blurry hole in my visual field as opposed to pain so bad you can’t stand up or sit down or get comfortable to even sleep? Bring on the AMD! At least it lets me sleep at night.

Then there is the ever popular: “you don’t have to help. I know things are hard for you.” Granted, I can’t do everything I used to, but I would like to help. Give me something I am capable of doing. Let me chose my task. Sitting there twiddling my thumbs and smiling is not good for my self-esteem and to top it off, it is BORING.

This did not start out as a missive about those pesky fully sighted people but that article got me started. I love my people. Out of the blue an acquaintance I see a couple of times a year offered to come and drive me to ‘Mom Prom’ (over 21, female only, buy a gown at Sal Val and go dancing. Actual motherhood optional) in April. Why? Because she knows I love to dance. My friend today drove 40 miles to go with me to a concert. Bless my people! I would be lost without them.

That said, sometimes the things people do and say get to you. And the little irritations of low vision get to you, too. And that, my dears, was where I was planning to go when I started this piece. So, discussion starter: what are your pet peeves about low vision? Continue reading “Low Vision Pet Peeves”

Call Tech Support!

Hey, there! Hi, there! And the sun sets on another Wednesday.

Had a small crisis today. My ZoomText went down. Just about gave me heart failure and put me out of commission for over an hour. I just get so much done when these things happen!?

Apparently they were hacked and a slew of certificates (proof you purchased the product and are allowed to use it) were stolen. They told us weeks ago and I thought our techs and I had put the proper things in place. No such luck! Today they pulled the plug and my ZoomText went ‘poof!’ Arrrrrrrrrrgggggghhhhhh!

Note to self: write the tech support number in BIG numbers and file it. When they wrote their contact and help pages, they apparently assumed ZoomText would be working for that consumer to read them.

Honey, if I need help, my ZoomText is not working and I cannot see that teeny, tiny font on the support page. I mean, really. These people make software to support the visually impaired. Don’t you think they should think of these things?

Anyway, once I scouted out the support number and waited on hold – long distance and no toll free customer number; fix that please – for about 20 minutes, I got a lovely person who took over my machine and fixed my problem. Yippee!!!!!!

Made me stop to think, though. I had a minor panic attack and I have resources. I have techs at both jobs and I know enough to search for support numbers. What do people with no ready tech people do?

Granted I pay for the – nom de plume here – Nerd Brigade to consult with me when I have a tech crisis at home, but they cost $$$$$. Lots of people do not have money to pay for tech support.

Maybe we could get some of the colleges to set up free, tech support for the visually impaired. Maybe they could get a grant to set it up and man it!

Maybe I see the germ of a great, new project here for somebody. Anyone know somebody who knows somebody who would like to take this on? Free idea! Service project! Someone has to know a college sophomore somewhere.

So that was part of my day. Teaching our absolutely wonderful DBT group was my morning. Can’t exactly say the day improved as it went on but all is well that ends well. I got my ZoomText back in commission.

Get to do the one at school tomorrow. One delightful challenge after another. Oh well, keep on keeping on. Somebody’s got to fight the dragons! Continue reading “Call Tech Support!”

Bored, Bored, Bored

I have now been snuggled in my cozy, little home with bad weather outside and a sick husband in the bedroom for over 24 hours. I have consulted with Lin. I have done laundry. Vacuumed. Sorted mail. Played my game. I am going insane.

The sick husband really is not the problem. He generally crawls in a hole and either gets better…or dies. I am the problem. I cannot find a thing to engage myself. What I should do does not interest me. What I want to do? Sure the hell is not in this house.

When I am bored I want to eat. Sure sign. When I do retire I will need to watch my intake. Instead today I have been going through the diet soda. Dropped the cap and got to clean out under the couch. Howard Carter-style. Crawling on my belly and looking for ‘treasures’.

Somehow the cap had bounced onto a cluttered (I have told you numerous times I am not the domestic type) shelf. Found the cookbook there, too. Not, if that was a suggestion from the Universe, that I will take the hint.

Beastie Baby is likewise bored. She has stopped following me around…Did I mention I also bounce from task to task and room to room when I am bored? She is now on her Serta Perfect Sleeper puppy bed. Occasionally her head pops up to see if I have given in and decided to brave the elements just to get OUT of this house! If I do, she is there!

Wikihow suggests several different things that might help being bored. You can make your task into a game. Stand away from the washer and throw the dirty clothes in. Two points! And the crowd roars!

You can get creative and imaginative. Dance with the mop or the vacuum. This is Dancing with the Stars!

You can make lists and challenge yourself. How many things can you check off in the next hour? If you reach your goal, you get to reward yourself.

What did you used to enjoy? Are you able to go back to those things? Vision may not allow for some of it, but revisiting old interests can be a way of eliminating some of the tedium.

Then, of course, there are new skills and interests. Even if it is something you swore you would never get into.

I always swore I would never chase a little, white ball around all afternoon but taking a golf lesson would be better than prowling around the house like a tiger with a sore paw!  I could dig out the Wii and practice my putt. I think I have golf on my sports disk.

Right now I can handle a day like today because I know it is not the norm. I have a full week to look forward to. Even a blues concert next Sunday. The rub comes when you look at a seemingly endless series of those days one after another. Then what?

Not too sure, but I know it will have to be something and opportunities are slowly presenting themselves. For example, a larger AMD organization has expressed interest in having us do some things with them. There are opportunities if you are open to them. You – and I – just have to go looking.

….or, I could always write a blog. Continue reading “Bored, Bored, Bored”

Come Ski With Me

Here I am again. Bored. Bored. Bored. My common sense is battling with my desires. I am still a snot bubble. Hacking, snotting, I am a beauty to behold. Anyone with common sense would have gone back to bed and pulled the covers over her head.

Wake me up when I am over whatever this nonsense is. Closed until further notice.

How well do you know me by now? I have no common sense! When I was small (and OK, when I was big too), my father would tell me that, for a smart girl, I was awfully dumb. My husband just suggested I not be a horse hiney. I had remarked that maybe, maybe I could use some of this beautiful new snow to go cross-country skiing this afternoon. Punctuated by hacking and coughing, of course.

Fortunately, there is one other person who has less common sense than I do. She is picking me up at 8 am tomorrow so we can get an hour of skiing in before we both have to go to work. I love irrational people!

I also love cross-country skiing. It is excellent, aerobic exercise. After you buy your equipment, it cost virtually nothing to ski. As long as you have snow, many people can just step out their back door and go.

Cheap, accessible and can be done by the visually impaired. Good combination.

Canada has a visually impaired, cross-country skier who has competed not only in the Paralympics but also in the plain, old Olympics. Brian McKeever was diagnosed with Stargardt’s Disease when he was 19. He lost up to 90% of his vision and, of course, what is left is peripheral.

McKeever skis. Oh, Lord, does he ski. Not only does he ski, he shoots. Aided by his brother as his sighted guide and some fancy technology, the man does OK. He has medaled numerous times in the Paralympics and won a spot on Canada’s able-bodied team. That was without the guide or the technology, by the way.

Simple fact of the matter is I have no more intention to compete than – what? Name something absurd – but if McKeever is doing what he does, why can’t I go out for a spin around the park? Other than the fact I have some disease right now? I think I can!

VisionAware has a list of tips for cross-country skiing with visual impairment. You need to choose an appropriate trail. If you are going cross-country when you cross-country, a GPS is a good idea. Managing glare is always a must and those of you with a significant vision loss need a guide who knows what he is doing and can give quick, informative instructions.

Except for the glare glasses, I really don’t need any of that stuff. I will be in the local park on flat terrain and we cannot really go far. I will do my hour’s loop and consider it time well spent. Good exercise, good environment. Good company. And it can all be had even with low vision. Sweet. Continue reading “Come Ski With Me”

Winter War

I hate to admit it but I spent a good hunk of Saturday afternoon eating ridgie potato chips, drinking diet Pepsi and playing Panda Pop on my iPad. Ambition? Motivation? Drive? Whatever you may want to call it? No, no, no and no. The veggie beef soup I had promised myself I was going to make was finally ready at 9 pm. That was fine with me. I was full of chips, anyway!

I had two reports – a long ‘un and a short ‘un – I needed to write. I must have found myself doing other things and put myself back on task two dozen times!

I finally got some interest in doing something productive Sunday afternoon. The real world was less than 24 hours in the future. I needed to get moving or I would be behind the proverbial 8 ball!

All this made me think of motivation. What is it? Why do we have it now but not later (or vice versa)? How do we cultivate it?

In true fashion I went looking for one thing and ended up with several, other, absolutely fascinating things that may be, at best, tangential to what is supposed to be my topic. You remember my topic: age-related macular degeneration; right?

First thing I found was the 1939 Winter War between the USSR and the Finns. I had never heard of it before but I was glad to discover it. I love history and I love stories about people with heart and endurance. David and Goliath sort of stuff.  In the winter of 1939 the Soviets decided they wanted Finland. They invaded in force without warning or formal declaration of war (unless you count leveling Helsinki with aerial bombardment as a warning! Bad form.)

The Finns were outnumbered and outgunned. Badly. Like 3:1 badly. Still they fought on in the dark and sub-zero temperatures. They had no other choice. They were children of the North and had been so for endless generations. The North is a hard taskmaster and she had taught her children to fight on in the face of ‘hopeless’ odds and appalling conditions. That was the way it was done.

According to James Clear in his essay on ‘sisu’, the Finns lost 70,000 people. The Soviets lost 323,000. The USSR sued for peace in the spring of 1940. The Finns had won. (Sisu is “a word that has no direct translation, but it refers to the idea of continuing to act even in the face of repeated failures and extreme odds.”)

Sisu is not easy to translate according to Clear. It sounds as if it is a cussed stubbornness. It is being too ‘stubborn’ and too ‘dumb’ to realize you are fighting a lost cause and ‘should’ give in. Emilia Lahti, a Finn herself, says sisu is all about facing challenges with valor and determination.  Sort of like taking the reins in your teeth and riding into the fray with guns blazing. Sisu appears to be the stuff of legend.

What does this have to do with blowing off an afternoon with a video game and snack food? Not much. I would suspect everyone of those Finns had had lazy days with zero motivation. No sense feeling guilty.

What does sisu have to do with AMD? Probably a bit more. Those normal, everyday Finnish people were suddenly faced with a dilemma that was neither normal nor everyday. They decided to fight. They reached into their souls and became equals to the Nordic heroes of legend. They became warriors. Not a bad trick when faced with an epic challenge.

Draw your own parallels. AMD is not 900,000 Soviet soldiers on your doorstep but it may be your Winter War. How do you want to be remembered? Continue reading “Winter War”

Should On You!

(Just as I am whining and moaning about running out of ideas for more pages, another thought hits me. What can I say? I’m impossible! But we really would love to hear from you anyway! Volunteer to do a couple of pages before I write again!) [Lin/Linda: PLEASE!!! She’s driving me crazy with the “I’m running out of pages, what can I write about?”! ::grin::]

Happy Tuesday! Today was a snow day without snow. School was cancelled in response to all these warnings and nothing happened. Pooh. It was rather anticlimactic. I was hoping to cross-country ski.

Cross country skiing would be another topic but right now I want to talk about my day. It flew! We took the recycling to the center and then I went to the camera shop where my expert and I picked out some photos to print. The contest is not until the fall but I have gotten into the ‘do it now’ philosophy of life. I had the opportunity and resources to do it today so I did it.

Not being sure how well you will be able to see in six months or so can give you the impetus to get things done and live a little more fully.

Then we went to the Chinese buffet where I had chicken and broccoli and pepper steak. Antioxidants are in those veggies. Good for what ails me.

Then home to get the Beastie Baby for her walk and home again to get a few other things done. Did a little work around the house, started a home study for continuing education hours and reviewed my lesson for tomorrow.

And my lesson is the topic I want to hit here. It will be on justified and unjustified emotions. Although I don’t like to use the word, justified emotions are what we ‘should’ feel. If something bad happens you are justified in feeling sad. If you win a prize, you are justified in being proud. The feeling matches the circumstances.

The problem is many of us – heck, most of us! – experience a lot of unjustified emotions. The big one is guilt. I would suspect you have been experiencing unjustified guilt more since your vision went bad. Guilt you cannot do your share of driving. Guilt you have to ask for help. Guilt you had to quit working.

Where does this come from? You – and I, too- ‘should on’ ourselves much more than is healthy for us. I ‘should’ carry my share. I ‘should’ be independent. I ‘should’ contribute.

Great values but unrealistic. The fact the thoughts don’t match the circumstances is what makes the emotion unjustified. It does not make sense to feel guilty about not doing something you are not capable of doing.

When you feel an emotion such as guilt sometimes it is good to investigate. DBT suggests you look at the situation, not your interpretation of the situation. “Mary is driving us to the store.” Not “It is awful I am imposing on Mary to take us to the store.”  Be sure to include all of the facts. Remember all of the facts includes your vision problems. Once you look at the facts without judgments it should be a little easier to let go of some of that guilt. Continue reading “Should On You!”

No Mud, No Lotus

 

No mud, no lotus
Yesterday the theme for our yoga practice (and remember it is yoga practice not yoga perfect. There is nothing in life we ever truly perfect. We are all seekers and strivers) was “no mud; no lotus”. Cool. A page topic.

 

 

Traveling in the yoga and therapy circles I am in, I have heard that saying a thousand times. It makes a great poster. Lovely, white lotus flower growing out of a bog. Beautiful. What does it mean?

Literally it means exactly what it says. The lotus, sacred plant of India, is aquatic. It roots in the mud and makes its way to bloom on the surface. Without having its roots in the mud, the plant would perish. (Or perhaps not. Fun facts: Wikipedia reported the oldest living lotus known is over 1,000 years old and Kew Gardens reported the oldest, germinating lotus seeds were 1,288 +/- 250 years old!)

Metaphorically, no mud, no lotus is about rebirth and emerging from darkness and a ‘bad’ place (BuddhaNet). It symbolizes rising above the defilement and suffering in life. It is a way to represent hope and victory over bad circumstances.

Please note the ‘bad’ circumstances are still there. No one drained the swamp. There would be no lotus if the swamp were drained. The ‘bad circumstances’ of the swamp are necessary for the lotus just like the conflict is necessary for the victory. No conflict, no victory. Got it? We need adversity in order to prevail.

And THAT is one of the moral of the story. We don’t grow because of the ease in our lives but because of the challenges.

I looked up no mud, no lotus and found some intriguing references to a book by a Buddhist monk named Thich Nhat Hanh. BARD does not list it or I would have downloaded it. According to other sources Thich – or should I say Hanh? – sees acceptance of suffering as the first step to happiness. It is not possible to fully experience one thing without knowing it’s opposite. Ying and yang. You can only appreciate the light if you have known the darkness. And that is the Zen take on the saying. Pretty profound in its simplicity.

I leave it to you to decide how no mud, no lotus might apply to your life. Has your AMD made you grow in any way? Are you more appreciative of your vision or of things you are still able to do because you have glimpsed a future without good vision? Has anything good come of your having AMD?

And if the answers to every one of those questions is no, I am going to ask why not. Perhaps now is the time to embrace your condition and make it work for you. No mud, no lotus. Continue reading “No Mud, No Lotus”

Thank You For Your Service

Happy Sunday. I am sore. I overdid. I not only did my usual Saturday routine but I went to the staff party for the elementary teachers and danced for about two hours. Maybe three? Anyway, while I lived to tell the tale, I know I exerted myself. (These are trained professionals. Do not try this at home ?.)

The party was at the local VFW (Veterans of Foreign Wars), which got me to thinking about our veterans. No matter what you may have thought of the VietNam conflict, the guys and gals who were in that war did their duty and deserve respect. They are all also of an age to be experiencing vision problems, including AMD. What does the Veteran’s Administration have for the visually impaired?

To start on a general note, the United States Veterans’ Administration (VA) offers a program called Aid and Assistance for veterans and their spouses who are over 65. The veteran must be eligible for a pension although I am not sure what that means exactly.

The program is to help pay part of the cost of having someone come in and help with activities of daily living. ADLs are things like eating, dressing and bathing.

Daddy served in World War II and was eligible for this benefit. Since we were trying to keep him in his home as long as possible, I had gotten him a caregiver to come in morning and evening. I also had him enrolled in ‘Daddy Daycare’ and transportation.

It was a real bear to get the approval – took about 14 months! – and we had to prepay everything and submit the bills. However, when all was said and done, we ended up with between $30,000 and $40,000 being reimbursed by the government. That money literally saved the house from having a lien put on it.

That is the general help available to everyone who qualifies. There are also all sorts of specialized services for blind and visually impaired vets.

According to The VA Office of Research and Development, the VA became involved with blindness and visual impairment in 1944. I think I mentioned before how the government realized it had an obligation to the war blind. Since that time the United States has started the VA’s Office of Blind Rehabilitation Services, which operates 13, Blindness Rehabilitation Centers for the ‘blind’ and also the Visual Impairment Center to Optimize Remaining Sight. That one is for veterans who are partially sighted.

I have had direct experience with the Aid and Assistance program but I have not had any experience with the vision programs the VA offers. Just mentioning them for anyone who might qualify and be interested in hassling with all of the nonsense that comes with dealing with the government ! ? Contact your local VA for assistance in learning more.

For those of you in the UK, you can contact Blind Veterans UK at 12-14 Harcourt Street, London, United Kingdom, @blindveteransuk, phone +44 20 7723 5021.

Continue reading “Thank You For Your Service”

Can An Old Dog Learn Braille?

A reader made a suggestion I could learn Braille. At first it sounded sort of fanciful. I am 63 years old and she wants this old dog to learn new tricks! I am sure it is REALLY hard. I am sure it will take me FOREVER.

Then I thought I should practice what I preach. Turn the mind and be willing. I could at least look into it….besides, it is good for a page and I am running out of ideas. Anyone else out there willing to share? I could use a little more, wonderful help like we got from Lara, Jennifer, Rick and Andrea.

VisionAware has a page on All About Braille. They tell us Louis Braille invented the system in France in the mid-1800s. Braille ‘cells’ are made up of two columns of three rows. Each letter and symbols is made up of a pattern of one or more dots.

The letter ‘s’ is dots in the second column-first row, 1-2 and 1-3. U is 1-1, 1-3 and 2-3. E is 1-1 and 2-1. There! I spelled my name!

I probably would want to learn alphabetic Braille first. That is letter by letter Braille. There is also a form called condensed Braille in which whole words are represented by one cell of dots.

Being part of the special education system, I know a little bit about sign language for the deaf. American Sign Language is not just standard English you ‘speak’ with your hands. It is its own language with its own rules and specialized characteristics. Condensed Braille reminded me of that. It is also just one of a number of systems, just like ASL.

Problems with learning Braille as an older adult include finger sensitivity. Some people are blind because of complications of diabetes. Diabetic nerve damage may interfere with learning Braille.

Right now, I really don’t see Braille as an option for me. Not totally because it would be difficult and time consuming to learn, although those are factors. The major reason is right now I have options that work for me just fine.

I have magnification through my CCTV, reader and iPad, as well as ZoomText on my work PC’s. My computers and my phone also have options that allow me to be read to. I don’t use those options simply because they are so dang irritating! However, if I get to the point I cannot navigate around my desktop or my phone, I may be happy to have them.   [You can review how Sue uses these by going to her pages A Day in the Life and A Day in the Life: Work Day.]

And speaking of being read to, don’t forget my KNFB Reader. Then there are BARD books and the newspapers on my phone.

If I want to write as opposed to read, I do have a few touch typing skills. Speech-to-text is also available to me. Of course, we all know some of the things that happen there.

For example: I tried to speech to text the text “we find our adventures where we can” and the message my friend got was “we find our dentures where we can.” Took a while for her to stop giggling.

OK. Gotta go. I have a staff party tonight and I still have no idea what I am going to wear. Could be worse. At least I don’t have to find my teeth!

Click here for an article on how Braille is useful on the job in case Sue changes her mind. ::smile::

Continue reading “Can An Old Dog Learn Braille?”

About the ADA

There was an interesting comment this week on the website in response to my page One Year Anniversary: Part 1 What I’ve Learned.  I was asked why I would have to quit my job when my vision got worse. The reader asked if the school was not obligated to accommodate me. She cited ADA.

The answer to that question is yes, and no. The Americans with Disabilities Act (ADA) requires employers to provide “reasonable accommodations” to employees with disabilities. Reasonable accommodations are defined as “necessary and appropriate modifications and adjustments that do not impose a disproportionate or unfair burden upon the employer.” The burden can either be financial or it can be in efficiency of getting the job done.

On the job I am already being given reasonable accommodations. If you look back in the pages, you will discover I have accommodations in pretty much all aspects of the job. When I do classroom observations, I wear telescopic glasses. I use my CCTV to do file reviews and learn my kids’ educational histories. When I test, I have my testing manuals loaded on an iPad so I can zoom in and read the questions easily. The tech department took days to do that for me! I use my CCTV again to record answers on the answer sheets. When I write reports with the assessment results I use ZoomText. Lots of reasonable accommodations in my work day!

When I become unable to see my kids to do observation, unable to read test questions to them or record their answers, I will have to stop working. Requiring the school to hire someone to do all that for me so I could ‘sort of’ do my job would be an unfair burden. I would not be doing my job, my helper would and the school would be paying two salaries. That is not fair not appropriate.

In basic terms, ADA does not require an employer to carry the dead weight of a disabled employee when she cannot do the job. What it does is allow those who can still function pretty well to keep working by changing just a few things.

The reader asked if learning Braille would not allow me to keep working. That is an intriguing idea and I may research and write a page on learning Braille as an older adult. Braille, however, would not let me keep my school job. Braille will not help me see what types of mistakes Johnny is making on his math papers. Braille won’t allow me to see how Susie is daydreaming in class. Those are integral parts of my job that require sight.

So, to summarize, ADA moves barriers off the playing field so the disabled worker can run down the field himself. Under his own power. ADA does not require the employer to carry the employee down the field on his back. I have reasonable accommodations per ADA but when I cannot fulfill my job duties using them, I am done. ADA cannot help me.

The learning Braille in my 60s idea? I will get back to you on that.

Continue reading “About the ADA”

A Day in the Life: Work Day

Sunday evening and I am getting ready to start another week. Wow. I was always told time goes faster as you get older but sometimes it is ridiculous!

I was also told time flies when you are having fun, so I guess I am having fun! And, yes, it is possible to have fun with AMD.

Maybe we can do a book or an infomercial on that: Fun with AMD. Sort of like Fun with Flags from the Big Bang Theory. Any thoughts on content?

Anyway, I went to my exercise classes and wrote a couple of pages yesterday. Walked Beastie Baby. Today was a haircut and a trip to the local warehouse store. Also actually wrote that report I was putting off. Sorted some laundry. Found an audiobook I want to listen to. Busy, busy, busy.

But for me, busy, busy, busy is better, better, better.  Not only do you distract yourself with activities, but you get to use your talents.  Sometime in Sunday school I learned we are supposed to use what we were given. It was never said you use what you were given until you start going blind.

So onward! Lin suggested I do a page on a normal weekday. Okey dokey. Monday.

The time I get up is determined by what time the crazy transportation company says it is going to pick me up. I have learned I also need to be ready about 15 minutes before they said they would be here because they are frequently early. Jeez. Flexibility is a virtue.

Monday is different from a weekend day because I have to really be sure my clothes match. I cannot slink home in humiliation in an hour or so because colors I thought were one thing are another and clash….badly.

OttLight

I have a small OttLite on my ironing board but the best bet is still natural light. If all else fails, I ask my husband “what color is this?”

If we were talking Thursday for the weekday, I have to make sure I have everything I need for the entire day. That means I get on transportation with CCTV, purse, briefcase, lunch, yoga mat and workout clothes. Having a good memory and a strong back are also virtues.

Justand V2

Back to Monday. At school I set-up my portable CCTV. I turn on my computer and ZoomText is soon up and running. These things are invaluable. At home I often crank the font size up to 28, but all that magnifies is the text. ZoomText does everything on the screen. If you are on your computer all day, ZoomText is worth the investment. Also LOVE my CCTV, but the price on that is salty and you can get similar results with an iPad and Justand.

Sue’s Eschenbach Smartlux Digital Magnifyer

I check for lunch choices with my handheld reader. I also read anything I cannot get to my CCTV with the reader. Something nice about the reader is I can hold it up to something slightly above my head and take a photo of it. Nice little feature.

Since I was always dropping my reader – slippery little devil! – we put a lanyard on the arm on the back. I can wrap the strap around my hand. It has gone on the floor much less since.

 

To review some of these devices, check out Sue’s page A Day in the Life.

Sue’s Telescopic Glasses

My telescopic glasses help me do student observations. I look like an alien, but the kids are used to it.

Books such as testing manuals have been scanned onto my iPad. My tech person at school did 90% of the work but I also scanned. It was a bit labor intensive but it allows me to read questions and score.

That is pretty much a work day. Questions? Continue reading “A Day in the Life: Work Day”

Queen of Denial & Her Friends

Hi. I am avoiding writing a psych report. Maybe I will feel more ambitious later. Or not. There are some days it is just not happening for me.

Anyway, been thinking about ways of helping people cope with this nasty vision loss stuff. We have gone over a lot of DBT stuff. Maybe we should get psychoanalytical. Dr. Freud; I presume.?

PsychCentral did a page on defense mechanisms. Defense mechanisms are ways people distance themselves from full-awareness of uncomfortable situations, thoughts, feelings etc. There are primitive defenses and more mature defenses. Primitive ones are the ones we may use as kids and they may not always work over the long-term. Mature defenses work a little better.

Want an example? Denial is a primitive defense. I know someone who is the Queen of Denial – because da Nile is not just a river in Egypt, ya know! If it is not to her liking, she denies it is happening. No acknowledgement. Nada.

You know the problems with that. We cannot refuse to acknowledge some ugly, little truths for very long. They have a tendency to break down the door and come in anyway.

A couple of more primitive defense mechanisms are regression and acting out. In regression things feel so overwhelming you just go back to an earlier stage, ignoring your responsibilities and wanting to be taken care of. Acting out is just that. Think temper tantrum. For a list of others, check out the article.

Then there are the mature defense mechanisms. I KNOW you did not see yourself in any of the primitive ones.

I know I ‘never’ engage in those.? Maybe you will see yourself in the mature ones.

For sublimation think substitution. It is channeling energy you would use in a negative way into a positive use. I want to scream and break things because my vision got worse. Instead, I scrub the floor.

Compensation is focusing on strong points. I was never beautiful but I was smart. Put a lot of energy into that. The day is coming I won’t be able to test so I am working on my counseling skills. Got it?

Last one PsychCentral mentions is assertiveness. Assertiveness is being direct and firm. Not too passive and not too aggressive. It is the Baby Bear of communication styles. Not too hard. Not too soft. Just right.

So those are the defense mechanisms. Are you leaning on a primitive one too hard? Could you start to use a more effective strategy? Might make things a little easier. Continue reading “Queen of Denial & Her Friends”

Weighty Matters

I am dense. In more ways than one, but the way I am talking about is good. I have a fair amount of lean tissue (read muscle) that weighs more than fat. That means that I don’t flip out when a body mass index calculator says I am overweight.

Truthfully, I am just over the line at a BMI of 25.1. A healthy weight is reflected in a BMI below 25.

But who cares? The fact of the matter is, if you are reading these pages you or someone you care about has age-related macular degeneration. And another fact of the matter is higher BMIs are associated with progression of AMD.

Obesity is associated with a higher risk than ‘just’ being overweight. However, being overweight increases your risk pretty significantly. Reading the data from 2003 and generated by research by Seddon, Cote, Davis and Rosner, I discovered the risk ratios for both group as compared to skinny people are over 2 to 1. That means chubby people progress to advanced AMD twice as often as their skinny cousins.

And, of course, there is more. ‘Apples’ not only have more problems with diabetes and heart disease, they also have twice as great a chance of developing advanced AMD. Belly fat appears to be nasty business in all sorts of ways.

Gives me a new perspective on Santa Claus. With that “bowl full of jelly” around his middle, do you think he has heart problems, type 2 diabetes and AMD? Somebody should talk to him (and Mrs. Claus!) before Rudolph has to become a seeing-eye reindeer!

So, you know the drill. If you are carrying a little extra weight, you have heard it all before. Now there is one more reason to shed those pounds. You may not care about those potential bogeymen they threaten you with (those would be heart attacks or diabetes for example) but what about your sight? I suspect you are losing that NOW as in, as we speak now. What would you do to slow that process down?

Seddon et al (same article as above) found a 25% reduction in rate of disease progression when patients engaged in vigorous activity three times per week. Sort of sounds like exercise might help.

Those of you who are paying attention may be trying to add up some facts about me here. I have been an exercise nut since I was 25. However, I have a rapidly progressing case of AMD at 63. Obviously working out did not help me….or did it?

I have no clue. Maybe it was my crappy genes were totally resistant to any positive intervention. Maybe I would have developed this stuff at 58 or 59 if I had not exercised. No way of knowing.

What I do know is I am zealous about the benefits of exercise. Want to improve your physical and mental health? Want to meet great people and have fun? Exercise. Oh, and it just might help to postpone your advanced AMD. Never know. Continue reading “Weighty Matters”

“You Don’t Look Blind!”

People mean well. They wish you the best and are just not educated about dry, age-related macular degeneration. They also are not used to a condition with no cure and no treatment. Therefore, God bless them, they say some really stupid things.

So far my favorite is “it’s getting better; isn’t it?” Get that one every couple of weeks.

What part of progressive, incurable condition don’t they get? I want to scream “No!” but I try to be patient and explain to them that dry AMD has no treatment and no cure and that – for some reason I think has to do with a rather poor genetic make-up in the eye department – my vision is on a fast track to hell.

Then I feel bad because they look so sad. Like their ice cream just fell off the cone. I somehow feel like I have disappointed them.

Since I don’t like to disappoint people I try to cheer them up (is there something wrong with that picture?) and tell them I am signed up for two studies and have been waiting for a year and a half. I am sure I will get some sort of help through one of the studies.

Then the advice starts. I should tell those researchers I want something done now! I should be more forceful with them. And why am I waiting around for a fancy, new treatment anyway? Their great aunt Tillie got those shots and they helped a lot. You need to go and get them!

Sometimes it makes me wonder how I got to 63 without making some stupid mistake and being accidentally killed. After all, I apparently am not very bright if the answer is that simple! Good grief.

Then there is the ever popular “you don’t look blind. You’re doing OK.”

This statement begs the question “what does a blind person look like?” I would love to ask but I don’t want to be rude. Truth of the matter being, many people have never actually interacted with a visually impaired person and, if they had, they may not have ever realized it. Since I have walked down the hall and managed not to run into anyone, I must not have an impairment. After all, in the movies don’t all of the blind people stumble around with their hands out in front of them? I, I assure you, don’t do that.

Last one: “it would be great to retire and just relax all day!”

There are so many answers to that one, I don’t know where to start! First of all, motor in my butt here. I don’t sit well for five minutes. Then, we are not talking a day or two, we are talking maybe 30 years. What am I going to do with myself for 30 years? Even relaxation gets old.

So there you have it. People say really dumb things. I try to remember it is generally out of concern and ignorance, sometimes a LOT of both. Therefore I try to be patient and turn the interaction into a teachable moment. I get up on my soapbox and tell them about AMD. Try to do the same; will you? After all, we don’t want to spend the rest of our lives listening to idiot comments; do we?

Continue reading ““You Don’t Look Blind!””

Blind Skiing

I see myself – inaccurate as it may be – as energetic for my age. I see myself – inaccurate as it may be – as pretty competent. Therefore I was a little offended when someone asked me if I ‘used to’ ski. Used to???? Really! I ski. Present tense.

I get to go tomorrow. I may slink home with my head down but I am going back to the slopes. My husband cannot ski anymore but he is going to take me and go do other things in the area. I am going to try my hand – or my feet, legs, etc. – at skiing once again.

Although where we are going does not have a blind ski program, there are several in the Poconos, that range of non-mountains in eastern Pennsylvania. There are adaptive ski programs at Camelback, Jack Frost, and Blue Mountain, all places I have skied. Although they are reported to all deal with pretty much all disabilities, ‘Blue’ advertises as specializing in visual impairment and developmental disabilities. Don’t know for sure. Haven’t been there since my vision went to crap.

There are a large number of postings about blind skiing on YouTube. These people are BLIND and absolutely hurling down the slopes! They trust their guides and their skills, knowledge of their sport and the mountain as well as their senses of their own bodies in space, to get them down safely. I really liked First Person: Blind Skier’s Quest for Gold. She questions why she spent time worrying and being depressed when the freedom of the slopes was there for her all along.

I am not that adventurous. If all I could see were shapes no more than a yard in front of me, I would not be speeding down a mountain. But it makes me feel like a bit of a wuss to know they are doing that when I worry about how I am going to ski with a blur in the center of my field.

There is the American Blind Skiing Foundation that appears to be based in Wisconsin (love those cheeseheads!) and also the International Blind Sports Foundation. They appear to be based in Germany. However, if you go online you will discover there are adaptive ski programs pretty much everywhere known for skiing and riding. Which reminds me: they also have blind snowboarding. Cool.

If you have a significant disability, have never skied, etc. be sure to call ahead. Most places require you to have reservations. Trained guides need to be available.

Oh, and another point, do not forget your glare glasses. It gets bright out there.

There you have it. Update on my latest adventure later. Hope not to run into you on the slopes! Continue reading “Blind Skiing”

Walmart Optical Saves the Day!

I broke my glasses last evening. I broke off one of the side pieces, called ‘temples’ believe it or not. Learn something new every day.

This became a bit of a concern because I do not have backup specs anymore. When I got these my optometrist wanted me to have every possible modification I could get. My lenses are purple and guard against ultraviolet light. They are glare and scratch resistant. They darken in the sun. These lenses do everything except march and whistle Dixie and they cost a small fortune. I cannot see me having an equally amazing and expensive pair sitting in a drawer in reserve.

I went to classes this morning and got on the trail of emergency eyeglass frame replacement this afternoon. Fortunately, I hit pay dirt quickly. Walmart’s optical department will do on-the-spot eyeglass frame replacements. Yippee!

Then came the fun of trying to match a frame to my lenses. It is so much more complicated than going in and pointing to the one you want. My lenses had been ground to be the size and shape of my original frames. That meant we had to hunt to find frames with a similar sized opening. Then we had to worry about the thickness of the lenses. Some frames would be too flimsy to take a thick, heavy lens.

There are other things that probably should have been considered and were not. Remember when you got new glasses and they put marks on the lenses? They were taking centering data.

Centering data appears to have two major parts to it. One is pupillary distance. That is the space between your pupils. This is much more important to know when your have stronger prescriptions. Knowing your pupillary distance and taking it into account when fitting glasses increases your chances of having the maximum correction from the lenses, called the focal point, right where it is needed, in front of your pupils. If they are not matched up, image shift and blurriness can occur.

The other one is the vertical fitting height. Once again this is important for making sure your pupil is lined up with the focal point of the lens.

In a perfect world, the girl at Walmart would have done the centering measurements for my replacement frames. But also in a perfect world my original frames would not have decided to fall to pieces late on a Friday evening! And/or the hospital glasses shop where I purchased them would have been open on a Saturday. You get the idea: this is not a perfect world! I was happy to get reasonably priced replacement frames within an hour’s time on a Saturday.

And you know what amazed the Walmart girl? The new frames actually look good on me! Score and bonus score!

Thanks, Walmart Optical for saving my day! Continue reading “Walmart Optical Saves the Day!”

The Podunk Gazette

OK. I got my acceptance for National Federation of the Blind Newsline NFB-NEWSLINE. I called the toll free number and the system recognized me from my cell number. I had been given a membership number and security code but I did not have to use them.

The next thing I had to listen to was an electronic voice chastising some subscribers for sharing the service with others who are not impaired. I had to agree to never as in NEVER reveal my passcode to mere mortals – read sighted people – and to never rebroadcast from the service. Same sort of stuff I had to swear to get BARD books.

I guess if you are getting money to serve the visually impaired you need to have some accountability but the whole secret society thing strikes me as excessive.

I got a whole page of navigation menu items for the service. I was not sure what I was doing so I just picked the first option and listened for a while. The voice was, of course, computer generated and flat. Not much that can be done with that at present. With the lack of inflection I had some trouble understanding it and it seemed to go pretty fast. The speed you can do something about. There are commands for slowing and increasing speed.

If I go to option 4, I can get a list of participating Pennsylvania newspapers. They read them off in blocks of six and it seems like the list goes on forever. That is a testament to the newspapers of the state because it is my understand newspaper participate out of the goodness of their hearts and there is no financial gain. Kudos to every newspaper on the list!

I picked the Allentown paper and went to the local news section. There was an enlightening article about a prostitution bust in my old hometown! Nobody I know. Dang.

There is a whole heck of a lot to navigate around in this service. This branching menu is not one tree. It is a forest! However, they do offer a favorites option so if you are partial to the Podunk Gazette, you can go straight there. (I certainly hope there really is no such paper as the Podunk Gazette. Since Podunk is my code works for end of the line, one horse towns, I certainly hope there is no Podunk! Open mouth and insert foot again!) [Lin/Linda here: Sue, you are safe, there is no Podunk Gazette.  But there is The Podunk Poets, The Podunk Bluegrass Festival, and the Podunk Throwbacks. I stopped looking after that one! Interesting fact of where the word podunk came from: “By being spread through word of mouth, many people lost the true meaning of podunk and did not even realize it was originally used and first created for Poughkeepsie. The town of Poughkeepsie (“podunk” or “pough town”) and city has now become less rural and more developed. ” Learn something every day! ::grin::]

There it is. Free – wonderful word – news service on your phone. Provided your local newspaper participates, the local news gap can now be closed.

I subscribed by going on the National Federation for the Blind website. If you need help, NFB offers a real person. In Pennsylvania her name is Jasmine Hunt and her number is 215-988-0888. No clue about the other states. Sorry.

Enjoy your morning rag again. Sometimes it really is the little things. Continue reading “The Podunk Gazette”

My Daddy and Me

I love my father. That is present tense even though Daddy has been dead for over 8 years. If there is really something like the Pearly Gates I expect to see my father waiting for me, right behind St. Peter.

Daddy and I were the 50s versions of Me and Mini Me. We were two peas in a pod. I have always looked like him. I moved like him. I have developed age-related macular degeneration just like him.

When I was ranting about my crap genetics, my friend said it was good my father was not alive to see he had ‘given’ me this condition. I have had clients with heritable mental illness who have children who now have the same mental illness. The parents feel guilty to have ‘given’ the illness to their children.

There is no such thing – at least yet – as ‘giving’ a child a heritable disease. Genetics are a crap shoot. You pay your money and you take your chance. Parents do not decide the genes they pass on to their children.

The bad comes with the good….just as it has come for millions of years. There is no choice and certainly no volition here.

I had a wonderful father. He raised me in a secure environment. He was my protector, my teacher and often my best friend. I have many of my values from my father. I learned life skills, such as coping through the hard times, by watching my father. I was never abused, never molested and I never truly wanted for a thing. If you are looking for what my father gave me, look at this list, not at my eye condition.

We do the best with what we are given. Often we don’t have a choice in what we pass on to our children. No one chooses to ‘give’ a child a heritable disease. It just happens and no one is to blame.

Where the choices are is where it counts. Chose to pass on love. Pass on positive values. Pass on good life skills. It comes down to the choices you make, not the genes you pass on. Just ask my Daddy and me. Continue reading “My Daddy and Me”

Resolutions

Back to school tomorrow. Christmas vacation is nearly over. We are already two days into the new year.

Saturday after our Zumba ‘party’ was yoga. My yogini was more reflective. She asked what we would like to make less room for in our lives and what we would like to make more room for. That was to be our ‘resolution’.

I throw the questions out to you as well. What do you want to spend less time and energy on in 2017?

I spent a whole lot of 2016 time and energy on worry and running twice as hard just to stay in place. Getting services, finding transportation, etc. Things fell apart and a good part of my year was spent trying to piece them back together. Although I understand I will never leave that totally behind, I would like to do a whole less of that.

What do you want to spend more time and energy on this year? I would like to start moving ahead again. Not sure what that might entail, exactly.

I very much hope to get into one of the studies. I want to be able to write about it here and maybe even speak about the experience. I see things evolving here.

Not sure where, but I want to take some trips. I want to see and experience more and even if I were not losing my vision, time is running out. The comfort factor seems to be more and more competing with the adventure factor when I look at destinations. Not sure when I started to get old but it is happening.

Crazy as it may sound, I would like to go forward from here with a little grace. I would like a little serenity in my style. Not being quite so flappable.

How to do that? Not sure. Acceptance. Faith in whatever you have faith in. This is not my fault. This is not my father’s fault. This is not God’s fault. Shit happens. The measure of a man is not taken when everything is going right but when everything is going wrong. Competitive to the core, I don’t want to be found lacking.

So what are you going to try to do a lot less of? Spend less time and energy on? What are you putting in its place? What do you feel you need to do to make 2017 valuable to you? This is your chance to make your choice. Continue reading “Resolutions”

The Cockeyed Optimist

One of the books nephew #2 considered necessary for educating Aunt Susie was Steven Johnson’s Where Good Ideas Come From. I listened to it and it came to mind today when someone insinuated I was perhaps naive to have such faith in stem cell research.

I will eternally be a cockeyed optimist but I don’t believe I am unrealistic. Johnson has a concept I call “you can’t get there from here” and he refers to as the adjacent possible. Have you ever wound your way through a large museum? You cannot get from the marine invertebrate section to the land vertebrate section. They don’t connect. However by traveling through marine vertebrates, you find your way. Same concept. We are not in the stem cell cure ‘room’ and we cannot get there from here. But if I can help the researchers get into the next room, maybe even the one next to the stem cell cure room, I want to help.

Truth of the matter is, astounding leaps and eureka moments are rare. It is important to support the people finding the slightly closer rooms, one room at a time.

A reason to be optimistic? The bigger the network the faster the innovation. The more people working on a project, the faster dead-end lines of inquiry are abandoned. One person’s findings spark an idea in someone else. We are climbing onto each other’s shoulders to reach higher and farther than any other time in history. Open exchange of ideas is spurring us ahead at an incredible rate.

Johnson even reports error is necessary for growth. This goes way back to genetic mutations. How boring the world would be if everyone were identical.

Variation through error allows for variations in thinking and even serendipitous events. Knowledge advances through errors almost just as much as it does through linear, accurate discoveries.

I appreciate people are concerned about me. I really do. I like when people want to protect me. It is a nice, warm fuzzy thing. But I am not going into this with crazy, pie-in-the-sky expectations.

My hope is to stop the progression of the disease in one eye. The phase 1 subjects got some acuity back because dying photoreceptors were revived. That would be nice.

After that I am on the 10 year plan. Vision in 10 years is my tentative goal. Might happen. Might not. I am cautiously optimistic.

Did I choose wrong with stem cells? No. There is another author my nephew recommended, Malcolm Gladwell. The book Blink by Malcolm Gladwell refers to a concept known as the adaptive unconscious. The adaptive unconscious makes decisions without conscious contemplation. It is knowing without knowing how you know. Some people call it intuition. Gladwell has discovered the collective unconscious is very frequently right. The adaptive unconscious was how I first came up with my plan.

Hold it to the scrutiny of the conscious? Of course! Looking at the pros and cons of everything – repeatedly as situations change – is necessary. After all, I am not naive ?.

Have a great day!

Love, the cockeyed optimist Continue reading “The Cockeyed Optimist”

My Drunken Elephant

Hey, folks! In real-time it is New Year’s Eve. Happy New Year!

Feeling better after my bout with food poisoning. Taking nourishment and getting back to my normal routine. That would include exercises classes this morning.

The Zumba class had its New Year’s Eve party at 9 this morning. Avoided the crowds. We had paper tiaras and horns. We danced to one of our favorite songs – Booty Wurk – and even added a new wrinkle namely, dancing down the line ‘just like’ Soul Train! (Please read that like the announcer back in the 70s did!).

It was about a dozen and a half women between 20 and 63 (guess who) acting crazy and having a thoroughly enjoyable time!

What’s wrong with being a little crazy, silly, goofy, whatever? Ask me and the answer is pretty much nuthin’. It is hard work being serious and oh so mature all of the time. It is also rather boring. I very much enjoy being just plain goofy!

Fun reduces stress. It makes you feel better by reducing cortisol and increasing serotonin (8 Health Benefits of Having Fun). It increases your ability to cope and boosts your energy, memory and concentration. You sleep more soundly. It also helps you establish positive patterns in your life.

Then there are the social benefits of fun. Want to develop stronger relationships and build lasting memories? Have fun together!  Strong relationships are built on laughter. A lot of laughter. Remember the crazy things you and your best friend did as kids? [Lin here: Or as college students. Do you remember, Sue, when you and R. and I did a rendition of “Chattanooga Choo Choo” at one of our Gompers Street parties???  ::grin::]

And not just as kids. Throughout our 20s our group had yearly theme parties. One was a toga party and another was a drag party.  I have a photo of two of my male friends – both with full beards – dressed like your perfect 1950s housewives, right down to the little straw purses!

Just the thought of that photo makes me want to smile now nearly 40 years later. If they had not been willing to be crazy and silly and even look a little foolish, I would not have that delightful memory to draw upon.

Or a memory from my college years. Maybe Lin remembers this one. We went ‘trick or drink’ on Halloween. My costume was footed pj’s and a robe. My hair was in pigtails and I carried a blue, stuffed elephant. We went from bar to bar ‘trick or drink!’ Damn elephant got drunk! Every time I set him on a bar, he would fall over! [Lin here: that was the day I moved into the dorm so I wasn’t part of that party.  I thought you were all crazy!  Later, I found out you were all fun! ::smile::]

My elephant having a trunk full became a theme for the evening and we got a lot of laughter mileage out of it.  I still have the memory….and the elephant somewhere.

Was going bar to bar dressed like a three-year old a little crazy? Sure, but it was fun and it is another thought that makes me smile.

So I guess the message is: don’t be so serious! Life is the funniest thing that is ever going to happen to you and no one gets out alive.

Last time I heard St. Peter does not give brownie points for going through life with a straight face.

Now, go play Booty Wurk and see if you can still shake it!

Continue reading “My Drunken Elephant”

All the News You Can Use

Being visually impaired is no walk in the park. However, things are getting progressively better. There is now a way to get your daily newspaper in a format you can easily access.

BARD books and magazines are great but not all that current. However, the Library for the Blind and Physically Handicapped, the people who give us BARD, has teamed up with the National Federation of the Blind to bring you your daily news. Same day, current news.  It’s called NFB-NEWSLINE.

I just filled out the application form.

The page will pinch and zoom. (Have you noticed the number of sites “for the visually impaired” that don’t even do THAT much?)

The whole process took about five minutes. They require proof of vision status. I put down my standing, hopefully in good standing, with BVS and BARD. There is an “other” box so I imagine you could list your retinologist.

Supposedly – this is technology, remember – you can call from any touch tone phone in the United States. All you need for the first time you call from that line is your registration number. After the first time the system will remember you.

There is a 10-selection, branching menu. You can even pull up sale circulars and TV listings! Of course, with a branching menu, it is possible for someone like me to get hopelessly lost, but they do provide an overview of what is what on the webpage.

I checked the list of available publications and it is extensive. Several local communities have their papers available. The newspaper for my old hometown is available. The local rag for this town is not. Oh, well. We won’t discuss how often I look at a local paper.

Apparently, newspapers must express interest and sign up for the program. However, it looks like people are able to tell NFB which papers they want to read and NFB will contact that paper.

There was also something about funding. However, there was no mention of any direct cost to the actual consumers. That would be us.

So that is pretty much it. Use your phone to ‘read’ the daily news once again. Cool. Continue reading “All the News You Can Use”

Highlight: Can I turn my TV Into a magnifier?

This article describes what might be a good and inexpensive option for many of you.

TV Magnifier

The device is only $65.49 at Amazon right now (no, we still don’t get any money from referrals).

Carson ezRead Digital Magnifiers – Transforms your Television into an Electronic Reading Aide

How Am I Supposed to Get Home?

Vulnerability. I guess this is a feeling many of the elderly and disabled have, but I do not like it!

What brought this up? Yesterday. Yesterday stunk! There was a series of unfortunate events that once again drove home the point I am not the queen of my world. Maybe not even a princess.

School had a two-hour delay. Bad roads. I had been told the transportation company would make accommodations for bad conditions. Apparently not the case. They wanted me to go in early as usual. No clue what I was supposed to do if I got there and they decided to close for the day. How was I supposed to get home?

My husband took me but he has been sick. It has been aggregating another medical condition he has. He says I worry about him because he is my back-up ride. Well, there is a grain of truth in that. Also not sure how I am going to manage my life and his needs if he is down and I am blind. Best not to worry about now. Put it away if you are not able to deal with it in the here and now. DBT distress tolerance skill.

Then my ride home, who has been totally reliable for the past ten months, forgets and leaves me! She came back for me, basically wasting an hour of her day, but I had limited options and she felt awful. Just the same, there was a certain sinking feeling associated with the whole thing. I really felt lost. The world can quickly go to Hades and there is not much you can do about it. Vulnerability.

So what exactly can be done? I found all sorts of stuff about dealing with emotional vulnerability a la DBT but very little about reducing actual vulnerability. I am talking about the real deal here. I want to be less vulnerable!

What I found was actually on a disaster website…and yes, there are times I think AMD qualifies. 7 Ways to Reduce Vulnerability and Prepare for Disaster suggested knowledge. Know your risks and know your options. Once again, have plans B,C and all those other letters.

That leads to their second suggestion which is having a social network. There is strength – and flexibility – in numbers. Have a number of people you can depend upon. Whom can you call for rescue?

Remember when you have run through your personal resources, there are always community resources. Whom can you trust to save you? Under what circumstances? Police and fire departments have responded to plenty of calls from people with lesser needs than, for instance, being stuck ten miles from home and having no way to get there. Know the non-emergency number of your local community services and, when all else fails, call. You might not get a ride in a police car, but they should know which church or social agency would be willing to come to your aid.

That taps into another suggestion: be adaptable, and creative. If the usual solutions don’t work, try the unusual.

I cannot really see how I can bend two of their suggestions – impact avoidance and mobility (mobility problems being a huge part of this mess!) – into being useful to my dilemma, but I might be able to use the last one, subsistence. The article suggests having go bags for natural disasters. Might be an idea for my situation, too. I try to make sure I am not stuck without my phone. I carry cash and at least one credit card. Packing a lunch and a change of underwear might be a little extreme but not unheard of. The basic idea is to have resources.

Not saying doing these things will eliminate vulnerability but they might limit it some. At least I feel a little better about it. How about you?

Continue reading “How Am I Supposed to Get Home?”

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