Category: Sue’s Musings

The Blind Spot – Part 2

Lin found about the best article on scotomata that I have seen thus far. It has some basic information. Stuff that I had inferred from other articles but had never been defined.

Scotomata are areas of vision loss surrounded by intact vision. Scotoma, as I said, is Greek for ‘darkness’. Again, not a happy thought.

A scotoma can be in one eye or two. It can be physiological. Everyone has a natural blind spot where your optic nerve is connected to the retina. We don’t realize it because our brain just fills in. No need to worry about physiological scotomata.

Scotomata can also be pathological. Because these are the result of a disease process, these are the ones we get to worry about.

Relative scotomata are the kind you can ‘see through’. You no longer have a full complement of cones but enough remain to sort of get the job done. I have relative scotomata in my eyes. Unfortunately, one of them probably just had a massive die off because it has gotten several shades darker.

When the scotomata go black you have something called absolute scotomata. Those are the areas in which the photoreceptors – in our case, cone cells – have pretty much all died.

A positive scotoma is one that is obvious to the owner of the eye. I KNOW – I am in fact positive! – I have blurry spots and I am aware one of them just darkened.

We had a comment from a reader who has a negative scotoma (maybe two). She wrote she quit driving when cars on the road would disappear and reappear. Her brain was ‘filling in’ the blank spot with a vision of an empty road.

Aren’t brains just amazing? Scary, but amazing. After all, that little trick could kill both the brain and its owner! (Or would that be its servant? Hmmmm….)

And that, my dears, is what I know about scotomata. Not much considering I am the ‘proud’ owner of two of them! Will they all progress to black? Dunno. I keep looking and asking and continuing to feel like a mushroom. You remember: keep me in the dark and feed me bullshit.

What I was told was it was not a conversion to wet. Reassuring but I never thought it was. I was told there was no obvious difference between my last OCT scan and this one. I guess that means the die off was not severely massive, only mildly massive (but I can still see the difference!!!).

I was also praised for being proactive with my vision care. Important for us all.

So, darkening of your scotomata apparently may occur. It probably means things are dying in there. That is my interpretation, though. I was told it was progression of the disease, but if you have a disease in which cells die, would not progressing be cells dying? Stands to reason; yes?

If you perceive a significant change in the density of your scotomata, call your doctor and go in for an OCT just to be on the safe side. Not much can be done for the progression of the dry, but on the off chance you are converting to wet, you need to catch it quickly.

Thus we end another ‘adventure’ in AMD. Anyone else having these problems? Sigh.

Continue reading “The Blind Spot – Part 2”

The Blind Spot – Part 1

Tomorrow I go for another OCT scan. That is optical coherence tomography. It is the one you look at the cross and the machine goes click, click, click vertically and takes pretty pictures of your retina.

I think I told you I think the scotoma in my left eye is more opaque. I think it is called density but I cannot find any information on it.

I am not understanding why they don’t publish this stuff somewhere. How are you supposed to understand what is happening to you if there is no information?

I have been told AMD vision looks like gazing through glasses with Vaseline smeared on them. Nowhere have I heard things go black in the middle. However, my scotoma is darker and things are not ‘bleeding through’ as well. Is this natural progression of the disease?

I feel like a mushroom. Keep me in the dark and feed me bullshit.

Did a fair amount of research trying to find something on scotomata. That is the plural. Like stigma and stigmata; you know. Scotoma is Greek for darkness so that is not very encouraging.

There are several different types of scotomata. The one we with AMD have is a central scotoma but there are also ones that obliterate half the central visual field, hemianopic scotomata, and peripheral scotomata. Pareacentral scotomata are near the central vision. Bilateral scotomata occur as the result of a tumor impinging on the optic chiasm. This is all info from primehealthchannel.com.

medical-dictionary.thefreedictionary.com talks about absolute scotomata in which the light perception is totally lost. There are a number of articles online that come up when you google AMD and absolute scotomata. It is obviously possible, therefore, for an absolute scotoma to be the ‘end of the line’ for macular degeneration. How delightful.

On a positive note, many of the articles that mention absolute scotomata are about teaching people how to use eccentric viewing. They are generally pretty positive about their results. Once again there is hope for navigating around this mess.

If somebody actually TELLS me something about what is happening, I will let you know. I, for one, do not think you need to be treated like mushrooms. In return, if you know the answer, let me in on the secret!

And in other news, I am going to go to Mom Prom! The person who first offered to get me there apparently ‘thought better’ of it and never firmed up the arrangements, but I have another offer. Not really upset at the first person but I think people need to be honest with themselves before they open their mouths. If they are not going to follow through, don’t volunteer!

I also got the invitation to speak at the summer camp for blind and visually impaired high school kids. No clue what I am going to say. These kids have more experience with vision loss than I have. Any suggestions?

Getting late. Talk to you later.

  • About the title: There’s a GREAT YouTube channel called The Blind Spot that we highly recommend.  The title is not about that, it’s that scotomas are often called ‘blind spots’.

Continue reading “The Blind Spot – Part 1”

Playing Clue

I really need to learn to keep my mouth shut. Yesterday I said all was quiet. Today I noticed the scotoma aka blind spot in my left eye was much more opaque than I remembered. De-freakin’-lightful. What exactly does THAT mean?

Since it is Sunday evening and not exactly an emergency, I don’t have a way to get an immediate answer. I shot off an email to my local retinologist. Should I panic or is this normal progression of the disease? Everything I have read says scotomas can be light gray, dark gray or black but nothing ever said if there is a progression and/or what that progression might be.

I looked online and it appears this opacity is called density. Maybe. That is what I supposed from reading a whole slew of article titles and descriptions trying to find something that describes what happens to scotomas as the disease progresses. You know full well I did not find such an article.

Really! These are not state secrets! Why can’t someone give us some basic information? They write books on what to expect when you are expecting and what to expect from your two-year old. Why not something on what to expect when you are losing your sight?!?!?

End of current rant. If you have any idea, let us know, ‘k? Sometimes I feel like I am playing a massively involved game of Clue or something. Was it Colonel Mustard in the garden with a pitch fork? Inquiring minds sincerely want to know.

The sad part is the availability of good knowledge in AMD has been a problem for years. I started listening to The First Year: Age-related Macular Degeneration. The book was written in 2006. Guess what HIS first rant was? Doctors who told him nothing. The author, Dan Roberts, did exactly what we did. He went online and found knowledge and comrades for his fight.  Reading his 10 questions that should get answers from the time of the diagnosis, I was happy to see we here are traveling a similar path as Roberts had. Roberts believes people with AMD should be told what to expect and how to find resources and live successfully. Now there is a novel idea! ?

He also has several other topics listed as chapter headings. We have covered a large number of them. Everything from ADA to stem cells and beyond. [Lin/Linda: click here Click here to preview the book.]

I will continue to listen to the book. It is already 11 years old but you never know what I might uncover between its imaginary covers (it is an audio book through BARD, ya know). Probably time for a rewrite….or we could write one ourselves. How do you like that for a scary idea?

So question: what would you want to see in a book on AMD, the life and times of men and women who have it, etc, etc? Might be a project here.

written April 24th, 2017

Continue reading “Playing Clue”

My Uneventful Life

Greetings from my busy but essentially uneventful life. In real-time it has been about five days since I have written anything. Nothing is happening. No one has peeved me off. Nothing in the research has reached out to ‘grab’ me. Nothing much going on.

Thinking about needing to write something, I started looking at what I have been doing. I am still working pretty much full-time. I am still exercising, walking the Beastie Baby – albeit a lot slower as she is closing in on 14! – and avoiding housework until it approaches critical mass (or critical mess, if you prefer!) I am also riding my bike a little bit and I have been ‘reading’ recent offerings from two of my favorite authors.

Looking at my mental inventory I realized I have been making gains on being myself. I have been getting back to being me!

My first year or so was a scramble. I was working with people to put all of my supports in place and learning to use same. I popped the big pieces back in place first. I got back to work and found a way to continue my exercise. I also added a new piece or two. For example, I started writing these pages and Lin put together the website and the Facebook group. Now it appears I might be putting in some of the smaller pieces, navigating in town on my bike and indulging in murder mysteries.

The research Londoners’ Experiences of Life-changing Injuries chronicles the thoughts and feelings of some who have experienced brain injury, but a lot of the thoughts would apply to the loss of any physical ability. Your self has, to some extent, been dismantled. Picking up the still usable pieces, adding the changes to those, and being alright with the picture created can be a challenge. Still, most people want to get back to a semblance of ‘normal’. They want to get back as close to being themselves as possible.

Totally possible? Probably not. Everything does not always go back together the same way. But that does not mean you should not try to get back to being as close to ‘normal’ as possible.

Right now I am adding back riding my bike and listening to Michael Connelly and John Sanford novels. What else might I add? Not sure yet. The Spring/Summer season is still young. Many summers I have taken day trips. Thinking about the logistics behind accomplishing one or two of those.

So there you are. Pretty basic life. Working, exercising, pedaling my bike around town and listening to mystery novels. Big deal? Actually, it kinda is.
P.S. Just finished The Crossing and The Escape Clause. Love Harry Bosch and Virgil Flowers!

April 23rd, 2017

Continue reading “My Uneventful Life”

Meaning and Purpose

We are about half way through the distress tolerance module for DBT group. We are working on the IMPROVE skills, the second of which is meaning.

Viktor Frankl said (actually quoting Nietzsche I recently discovered. Learn something new every day!) – to paraphrase – if you have a why to live you can pretty much survive any how. Much of life is in meaning and purpose.

We put up with all sorts of nonsense when we know why, have a personal reason, we are doing it.

When something happens that rocks us at our very foundations – let’s say sight loss, just for devilment? – we can really start to wonder about our purpose in the world and the meaning in our lives. Some people find the problem takes up so much of their time and energy they cannot break free to do anything else. They have thought they have no meaning for their existence.

Frankl came up with an answer to that question. To quote (exactly this time!): “The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – under even the most difficult circumstances to add a deeper meaning to his life.”

In other words, sometimes the meaning that is in your life and that will allow you to endure is the grace in which you accept and deal with your fate. You don’t have to be finding the cure for cancer or saving orphans from raging flood waters, all you have to do is be an example of acceptance and endurance.

Acceptance and grace in the face of some truly crappy circumstances is the basis of several world religions. Frankl did not use the imagery of taking up your cross by accident. Some of the allure of the Easter story is Jesus’ example of acceptance and grace in a nasty situation. Being able to say “Thy will be done” is actually pretty impressive when you think about it.

So one of the things that any distress – including vision loss – can do for us is to give us the opportunity to develop grace, to transcend through acceptance (not approval or resignation). The meaning in your life becomes your quest to transcend.

Another thing distress can do is build mental and emotional “muscles”. I have one client who has endured heavy-duty mental illness. He amazed himself with how tough he could be. The meaning he gained through his trials was “I learned how tough I truly am”.

To quote Nietzsche once again, “that which does not kill us makes us stronger”. Or at least it makes us aware of the strength that was there all along. Perhaps the meaning in your pain is “I’m tough, I’m bad. Even this nonsense cannot defeat me.”

So, meaning and purpose can both be helpful in allowing you to accept and endure distress. Maybe your meaning is nothing more than showing yourself and the world you can weather the storm with grace and strength. That’s okay. “The way a man accepts his fate and all the suffering it entails…gives him ample opportunity…To add a deeper meaning to his life”.  Continue reading “Meaning and Purpose”

Beautiful Day for a Bike Ride

Today was a beautiful day to go for a bike ride. It was around 65 degrees Fahrenheit and sunny. My husband dropped me off on the other side of those two, pesky, main roads I would need to cross and I toddled around town. Never traveling much more than nine miles an hour, I rode through some sections of town I had not seen in two years. Stopped at the convenience market for an ice cream cup and diet Pepsi and got myself home. Nice and singularly uneventful.

I keep looking for online posts on cycling and keep finding next to nothing. If you want to cycle in tandem – and there is absolutely nothing wrong with that – you can find all sorts of tips. If you want to become a Paralympian, there are posts about that.

There just does not appear to be a cursed thing on slightly aged, recreational cyclists who want to feel the sunshine on their faces, the breeze in their hair, get a little exercise and be masters of their own destiny for an hour or so.

When I say masters of their own destinies I might be being a little melodramatic. However, being able to decide which road you want to go down, how long you want to ride and where you want to stop is delightful! Since I have not been driving, those decisions have been taken away from me. At least riding my bike I can get a little taste of those freedoms back.

This was a grand total of three times I have been cycling this season. I have about 25 miles under my belt. Bluntly put, I don’t have enough experience to offer any recommendations or opinions. I know nothing.

The fact that I am still alive to write this does, however, means it is possible. I can tell you what I did and you can make your own decisions. I will not be held responsible for your death or injuries. Use good judgment.

I started in a close, controlled area. I was first riding in a large parking lot after hours. It was there I realized I could look at the horizon and then see what was directly in front of me. I could also see a number of yards ahead of me. Going only 7 or 8 miles an hour, I was not going to run into anything.

There are a couple of alleys I can go down to get to the Rails-to-Trails path. I have been avoiding the main drags and riding on them as little as possible. Crossing the main road I am now crossing only at the lights. Once I knew I could see things that may be directly in front of me, I scooted down the alley and rode on the rails-to-trails. No motorized vehicles are allowed on those.

Today I rode in some neighborhoods in town. The speed limits are 25 mph on the roads I was on. It was midday and traffic was light. Just the same, I tried to remain very aware of the sights and sounds of traffic movement.

So far so good. Remember this is me, my vision, my town. You with your vision and your town may not be able to go cycling. But then again, maybe you could. It was a beautiful day to go for a bike ride.

written April 17th, 2017

Continue reading “Beautiful Day for a Bike Ride”

Cautionary Tale

So, yeah. I am a little hard on parts. We just boxed up my CCTV to go into the shop and now I have cracked the screen on my iPad. ? Never a dull moment.

OK. My tablet just capitalized never a dull moment. Huh? Turns out it was a 1950 movie. Not sure why the tablet would ‘think’ I meant or even knew that reference but machine intelligence is different. I seem to add to my fund of useless knowledge quite regularly that way. Tablet making weird and esoteric connections. [Lin/Linda: I think it’s a conspiracy against ME…gives me more weird links to find! BTW, there was a 1968 movie of the same name.]

So, back on track, I dropped my mini and there is a nice crack in the screen. I was all ready to take it to the iPad ‘doctor’ and have it repaired but financially that may not be a plan. According to Lifewire that would’ve been a case of the cure being worse than the disease.

The Lifewire post on iPad screen breaks assured me my iPad would probably continue to work with a cracked screen. They say it will work not only with the nice, clean, linear crack my mini has but even when the screen is shattered! Of course, having spider web cracks on your screen would not help seeing what is there and we have these things, at least in part, to help with seeing! That could be a problem.

According to the post, it would cost $199 to get my screen repaired. I just paid $220 for the next better mini iPad brand new. Mine is now a year and a half old. You can see where the numbers are leading: repairing a screen is probably just not defensible from a financial viewpoint.

So, what are the options? Again according to the post, if your device is still under warranty, you might be able to squeak by with a service charge of $49. Apple Care does cover accidental damage so if you are ‘hard on parts’ like I am, you can get it fixed with minimal financial pain.

If it is not a bad break and everything still works, just living with the crack may be your best option. The article suggests getting a protective case. Exactly what I intend to do. An example of another old adage: closing the barn door after the horse runs away!

I have Otter cases for both my phone and the big iPad that Blindness and Visual Services bought for me. I am pretty happy with them. At least those devices have not broken yet!

I just ordered a neon green and a berry purple mini iPad case from the marketplace for the known Universe, Amazon, of course. $10 apiece on sale. I have Prime so it is free shipping.

I also ordered UV filters for both of the devices. (I actually have my technophobic husband using a mini!) Remember blue light is ‘bad’ for your retinas and electronic devices are primo sources of blue light.

Just read an article saying Baby Boomers are not as aware of UV damage and not taking as many precautions as younger folks. I was going to write a page on it, but I pretty much covered it there in two lines, so don’t hold your breath waiting for the page!?

So once more I am the ‘star’ of a cautionary tale. Protect your devices. Repair costs are reported to be just plain nasty. Cases are cheaper.

Written April 16th, 2017

Continue reading “Cautionary Tale”

No Kidding!

I pulled a ‘dumb, blind’ chick trick yesterday. I read the time on my phone wrong and was waiting for my ride an hour ahead of time. That was bad enough but when I thought she was late, I got worried about her and started texting her. Pretty sure she was not the one with the problem!

Moral of the story would appear to be you should double-check what you think you know before acting on the ‘information’. Fortunately she thought it was amusing. I decided to laugh, too. Rule 62.

I have finally found time to go to the vision support group run by my low vision specialist. That is tomorrow afternoon. Work is in a temporary (I hope) lull and I could rearrange things a bit.

Not sure how that is going to go. My low vision person had said she wanted me to attend so some people could see you can survive and adapt with vision loss. Not sure I want to be exhibit A. I would like to help but some people get resentful when you try. See how it goes.

We all know the support of others is so important when you lose your sight. I find it sort of amusing – but sad – the medical community is just awakening to that reality. Literally yesterday in real-time, April 10, 2017 they published an article entitled Communication from Doctors Could Reduce Anxiety for Macular Degeneration Patients. Excuse me, but “no shit”. Do you think they joined our Facebook group and figured that one out?

The good folks at Manchester Eye did a study that found large levels of depression and anxiety in people getting shots for wet AMD. No…ahhhh. Never mind.

But don’t you think having a needle stuck in your eye would be a really good reason to be anxious????? Just saying, ya know.

Manchester went on to say there is “value in human interactions between clinician and patient” in offering reassurance about the treatments…..I’ll just bite my tongue and be quiet now.

Better yet, Hugo Senra, clinical psychologist, suggested there is value in specialized counseling with certain patients. All rightee, then. Cognitive behavioral therapy, dialectic behavioral therapy? How about trauma therapy? Not like they are not available most places yet the study indicated 89% of the patients showing anxiety and 91% of the ones showing depression were getting no therapy at all! Someone – actually a large number of someones – appears to be dropping the ball here.

So, yes, it does appear the anxiety and depression you are feeling about your AMD and the treatments really do exist. And yes, we are a grossly underserved population. And yes, we might actually benefit from treatment.

If you are one of those thousands and thousands of underserved folks and want psychological treatment, turn your insurance card over and call the customer service number. They should be able to provide you with a list of therapists who take your insurance. If you have no insurance, call your local mental health agency. In Pennsylvania they are called base service units. Elsewhere I have no clue about the nomenclature but if you search for public mental health providers, they should come up.

In short?……..

AMD? Depressed? Anxious? There is help. No shit. Continue reading “No Kidding!”

Let People Help You

I stand amazed at the number of good people who are coming out of the proverbial woodwork to help me. Really amazed. I don’t deserve people being this nice to me. I don’t. Just the same, one of my newer colleagues picked me up and took me to staff meeting this morning. Another offered me a ride home from yoga for tomorrow. My newest colleague carried my portable CCTV to the car for me at the end of the meeting. Good grief. I am surrounded by beautiful, helpful, people!

I assume it is not because I am pitiful. I’m out there plugging away and doing a good day’s work. My clothes match (usually). I am not running into walls (much).

There is a difference between pity and sympathy by the way. Perhaps it is not in the dictionary this way, but I think of pity as having a sense of hopelessness. You pity someone if you see no hope. ‘Sym’ is united or together. ‘Pathos’ relates to emotion. (Did I mention I love language?) Sympathy has more of a “I hear you, sister” quality.

People often confuse the two. They grumble and grouse about not needing pity and reject sympathy. Not a plan.

I like to think the reason I do get help is because I am still trying to stay in the proverbial game. The Bible did not say God helps those who help themselves; Benjamin Franklin did. However, there is precedence for the saying in the Quran.

I quote the Bible badly. I know nothing about the Quran. I suspect I might quote it even worse. However, MuslimInc.com tells us not only is it necessary in Islam to help a deserving person but it is also necessary to do as much as possible by one’s own effort. Then Allah will help. Allah helps those who help themselves.

I think that means we are supposed to keep pitching. What do you think? Not saying there is divine intervention here, but when I am trying my best but still in need, someone usually comes through for me.

I said this before but I will repeat myself: I do not believe my community is exceptional. I really don’t. There are millions of communities out there that would be helpful if given the chance. According to The Social Mind 80% of their respondents participate in online social networks to help others. These people live somewhere. It is not in cyberspace! Some of them are probably in your town.

In 2012 National Public Radio did a piece on the good in America. They called what they found Participation Nation and they found lots of good stretching from sea to shining sea.

People like to do good work. It gets them into Heaven by doing mitzvahs. It also makes them feel better on a physiological level in the here and now. Letting people help you is a win-win situation.

So, get out there! Let people help you! It is not pity. It is help.

written April 8th, 2017

Continue reading “Let People Help You”

Putzing Around

The totally unforeseen, seldom happens occurrence happened today. I ran out of work. Weird. Something like that hardly ever happens. I NEVER get caught up but today I did. Incredible.

I did the school work I had to do. Nobody had anything else for me so I did the outside work I had in my bag (shhh, don’t tell!) and when I got that done, I just sort of sat there, dazed and amazed.

Nothing demanded my attention. There were no deadlines staring me in the face. It was a little scary.

Now, I know people who can putz around all day but one of them is not me. Putz? For those of you for whom American English is not a first language (or for whom British or Canadian or Aussie English is not a first language either, for that matter), I am back to sprinkling my speech with Yiddish again. Never realized how often I did that until I started thinking about ESL readers.

Anyway, putz as a verb means “to engage in nonproductive or inconsequential activity”. It also means something as a noun but we don’t need to go there.

To repeat, I know people who can putz around all day but one of them I am not. I am more your type A type. Goal-oriented to the core. Therefore when I don’t have an assignment, and realize a time will come when I won’t have any more assignments, I get a little scared.

The Huffington Post had an article on being mindful. The title was Why Doing Nothing is the Key to Happiness. I found it while I was having my existential crisis and had nothing to do. ( When all else fails, write a page! ?) The author suggested being might just be enough. Noticing may just be enough. We just have to be mindful of what is in front of us.

Then he said noticing requires a stillness of the mind. Aha! A goal! I can work on being still. But the problem with that is you cannot ‘catch’ stillness by running after it.

Probably need to work some more on the mindfulness thing. I tend to try too hard.

Thoreau is quoted in The Art of Doing Nothing. The concept he was espousing was not to let ourselves constantly be slaves to routines, shoulds and musts but to let our ‘instincts’ guide us. Thoreau would set out with no particular destination in mind and just see where the road led.

That might be a thought. No specific goal other than discovery. No timeline. No schedule. Exploration.

Of course, every time my husband has tried that on vacation I have gone insane with frustration. There were things I wanted to see!

All of which makes me think I am going to have a very ‘interesting’ time of it when the eyes force me to retire. Anybody know of a good how to book on putzing around? I think I am going to need it.

April 4th, 2017

Continue reading “Putzing Around”

Love Wikipedia

Just came back from walking the Beastie Baby. I use my monocular a fair amount on walks. There were several, large, black birds in the trees in a little woods. I used my monocular to see hooked beaks. That meant they were most likely turkey buzzards, carrion eaters. Hypothesis confirmed when the sweet, fetid stench reached me. There was a dead deer over the bank in the stream.

Turkey buzzards are amazing. Ugly as sin, but amazing. What I was able to smell at 15 feet, they have been known to smell from a mile away. Our friends with the Audubon Society tell us the turkey buzzards (aka turkey vultures) have the largest olfactory system of any of the birds.

Which has exactly nothing, nothing to do with AMD, but is an example of one of the distraction skills, thoughts. One cannot live (well) thinking of nothing but AMD and our collective predicament. Besides I think Fun Facts are fun!

But enough of the sideshow and back to the main event. I might – and that is a big might – have found an answer to my question about how many degrees of arc make up central vision. I found what I think is the answer in Wikipedia. And here I was looking in all those hoity toity profession journals expecting some help. Silly me!

Actually I got two answers. Neither is God-awful if you consider where I thought this condition was taking me, but one of the answers is significantly better than the other. The first, better, answer is central vision is 18 degrees of arc (refer to the image to the left; click here for a larger version). If you consider the outer rim of the macula to be the boundary between central and peripheral vision, 18 degrees of arc is central vision and what we might be expected to lose. That is 18 degrees out of a visual field of what I have read different places is pretty close to 180 degrees horizontally. That’s 1/10! A heck of a lot better than the total blindness I thought I was going to have.

The other one is 30 degrees radius, which is unfortunately – check my math – 60 degrees of arc (refer to the image to the left; click here for a version).  A point 30 degrees from the center was chosen because after the first 30 degrees acuity declines sharply. There appears to be some sort of dividing line there.  Color vision also significantly decreased around the same place on the retina. The article also suggests 30 degrees radius is where good night vision ends.

So, the jury is still out on this one but we are getting closer to a verdict. The amount of loss that can be expected from geographic atrophy appears to be – and remember this is total speculation on my part; I know nothing! – somewhere between 18 degrees of arc and 60 degrees of arc. Those number are either a tenth of a third of our visual fields. Again, not great but better than what I thought was going to be true blindness. A small reason for optimism perhaps.

Right answer? Danged if I know. If you are going to see your doctor any time soon, do me a favor and ask. I really am curious. Continue reading “Love Wikipedia”

C for Contribute

Today was not the best of days. I did entirely too much housework and there was a little difference of opinion here on the home front. Of course, you know I was right!?

Since I am now teaching distress tolerance, I tolerated my distress by doing some activities, such as preparing my lesson plan. If you have been following along on this journey you know activities are the A in ACCEPTS in Dialectic Behavior Therapy.

I then looked at my notes for the first C, contribute. The list of stuff we have on the PowerPoint all sounds like a lot of work to me. Do volunteer work? Make something? What, for heaven’s sake? I gave up being crafty in high school. Lots of invested time for needle-crafts that went in a drawer. Maybe that is why they suggested you give the stuff away!

My answer to the too much effort, too much time and need to do something because I am distressed NOW bit was random acts of kindness. Random acts of kindness have become very trendy. [Lin/Linda: there’s even a website and foundation with that name.]  They are so “now trending” that we have a random acts of kindness wall at school and someone has started a line of random acts of kindness gifts. While I tend to think that all this play is making this random acts of kindness stuff a bit schlocky (love Yiddish. It is so expressive!), there is something to be said for the original concept.

The National Civility Foundation has a civility toolkit in which they encourage 24 acts of kindness in 24 hours. They obviously believe it does something positive.

I found several lists of 100+ random acts of kindness. I took the one with 102 things because it was a regular list and would print out on three pieces of paper. Random act of kindness for the environment and my pocketbook. Ink is expensive.

One of the things suggested on the list was donating old clothing. That was one thing I actually did today. Strolled over to the church and put things in the Red Cross bin.

Which brings me to a cautionary tale. I know this went viral on the news networks so you probably saw it in the States, maybe other places, too. Anyway, a woman in the region died after she got her arm stuck in a Salvation Army donation bin. She was, shall we say, doing a ‘reverse donation’ from the bin at 2 a.m. in February. Her stool went out from under her, her arm got trapped, and she froze to death. I teeter between saying it was all very sad and saying it was poetic justice. Not that any of you people would do such a thing. I just found it amazing. The fact she was stealing from a charity while driving a Hummer makes it even more amazing.

And that, my dears, is the second C, comparison. We are all allowed to feel a little superior that we have not done anything like that. At least I hope we haven’t.

So go on out there and hold open a door. Put a coin in someone else’s parking meter. Smile at a stranger. And if you go to the clothing donation bin? The stuff goes IN the bin.

written April 1, 2017

Continue reading “C for Contribute”

Fair and Impartial

In the interest of being fair and impartial – even though I really am not, impartial, that is – I guess I need to put in a plug for those who are helping us. You know, those caregiver types.

‘Caregiver’ for me right now means chauffeur and someone to occasionally see or read something I cannot do myself. However, there are some of us who have caregivers with a much broader range of responsibilities.

Khan et al at Queen’s University in Kingston, Ontario completed a study on burden and depression in caregivers of the low vision and blind. One of the things they found in their research review was 50% of legally blind or no light perception patients were separated or divorced within 1.6 years of the onset of visual impairment. This was not related to the length of the relationship.

In other words, if you are low vision and you want to strangle your spouse or your spouse wants to strangle you, there is precedent in the literature!

Also in their research review they found spouses of people with low vision had an increased risk of poorer physical and emotional well-being over 5 years. Perceived burden on caregivers per Khan et al was related to limitations imposed on the caregiver’s personal time. Time spent in direct care and supervision of the visually impaired was correlated with depression. The more of a time commitment, the greater the depression.

What can help? Caregivers of those who had gotten low vision services did better. It appears having all of those gadgets and knowing how to use them does have some extended benefits.

The Mayo Clinic agreed that longer hours of caregiving lead to greater stress. They made a list of things caregivers can do to make things easier on themselves. It does include getting help to spread the burden . It also suggested setting realistic goals (“It’s a bird! It’s a plane! No, it’s Super Caregiver!”) and getting connected to others in similar situations. The ideas are not highly original but they have often worked.

So it would appear if we want to stay out of divorce court – or criminal court on charges of murder! – we should finish a visual rehabilitation course so we can stay less dependent on a caregiver. If this is not possible, allow a second person to come in to help. According to Khan et al, 2.5 hours daily of direct care is the magic number. Above that the burden and depression increase in earnest.

And in related news, I rode my bike today! 6.21 miles. Not great, but it proved it can be done. An increase in my independence that will take some of the burden off people supporting me. Good deal!

Even better, I got back to some of my ‘normal’. I used to ride and stop at the convenience market for a caramel ice cream cup. Today it was as good as I remembered it. Yum.

written April 2, 2017

Continue reading “Fair and Impartial”

A Compromise for Today

There are days I could cheerfully wring a few people’s necks.

Now, I know nobody else can truly see what I see. I know most people believe my vision is worse than it is, but being told I “can’t” and I “should not” drives me crazy.

There is feeling loved, but there is also feeling limited. Unnaturally so, since I don’t see the limitation as a direct consequence of my low vision. I see other people and their perceptions as being the agents!

Of course, there really is having to be more dependent in certain areas, like transportation, for example. I don’t like it any more than some of the people I am leaning on. I really want to drive again (and someday will, even if it is actually the car doing the driving!) but right now I am stuck. Stuck but needing my routine. I already feel like I am leaning on some others too much; why make me feel even worse? I am doing the best I can!

But there are other people in this picture. There is not only the leaner but the ‘leanee’. People who are thrown into the position of being caregivers (and I use this term loosely since I do not think I or many of you actually need caregiving) are also experiencing significant changes in their lives. There are more demands and changes in their routines. They also have fears about where this may all be going. Maybe they have the right to sometimes get a little testy (but not very often!)

The American Foundation for the Blind published an article including tips for family members of the older, visually impaired folks. I think whoever wrote the article was, at least somewhat, on ‘our’ side. The article talks about the importance of lending both practical and emotional support in order to keep the visually impaired person leading as normal a life as possible. (OK, I saw the ‘n word’. But truly, isn’t ‘normal’ what a person is used to doing and not just a range around a statistical mean?)

One of the points made in the article is a point I made in a page last week: we all are not so much independent as interdependent.

Just because we are visually impaired does not mean we cannot contribute as well as receive. Even visually impaired we can be productive.

So we have reached a compromise for today. My bike and I will get a ride to the other side of the two, main roads I have to cross to get to the Y. After that my trusty Schwinn and I are on our own (coming back I can stay on the right of the second road and use an exit ramp to dump me on the right of the first road. No crossing required….Sounds backwards to you folks in England; doesn’t it? ?) I am using this as a test run. See how I do.

I have a lot more confidence in my mobility this year than I had last. For those of you just embarking on this journey, you really do learn to use residual vision. Give it time.

Right now I have to go find my bike lock. Let you know how I do!?

P.S. maybe the next page I will write from a caregiver perspective…Maybe not ?. Continue reading “A Compromise for Today”

Gotta Laugh

  • From optiboard forum: Czech eye joke:
    • Doctor: Can you read this line?  CZWXNQSTACZ
    • Patient: Read it? Of course! I even know the guy!

From funnysigns.net: Eyes examined while you wait.

 

 

 

  • From “Thousands of Jokes”:
    • How did the blind woman pierce her ear?  Answering the stapler
    • How do you make a Venetian blind?  Poke him in the eye
    • How does a blind man drive a car?  One hand on the wheel and the other on the road.
    • Why was the blind man’s leg wet?  His dog was blind too.

Vision loss is serious business. Writing a blog about vision loss is serious business. Being a psychologist and an educator is serious business. I am a serious person…..NOT.

I got the “Oh, you are such an inspiration” comment again. It was very kind of her, but knowing who I really am, I cannot take myself so seriously. Start believing that stuff and I will be demanding white roses and only red M&Ms in my dressing room. (Actually, you can just send me all colors of M&Ms. M&Ms, like people, all have the same good stuff inside?)

You are not supposed to take yourself so seriously. Alcoholics Anonymous says so. It is rule 62. I am not an alcoholic but when I googled don’t take yourself too seriously it popped up as rule 62. How about that!

There are parallels between getting sober and vision loss. Howard Barker wrote how he never believed he would be able to laugh and have fun in sobriety. After all, if you are sober aren’t you supposed to be sober?

Sound familiar? Does the ‘role’ of a visually impaired person leave a lot of room for levity? How can one possibly have fun in that condition?

Barker makes the point that the ability to laugh at yourself makes life more fun. It also makes you more fun to be around. I make the point that life is the funniest thing that will ever happen to you so you might as well laugh and enjoy it.

Barker also makes the point nobody is perfect and it is the quirks and imperfections that make us unique and give texture to our personalities. I agree with him. Now that we have vision loss we may have a few more quirks and imperfections but maybe they just make us more unique and special.

Addictionhope.com stresses all of the positive effects of laughter. Their article on rule 62 talks about the positive effects of laughing at yourself. Laughing at yourself helps to keep things in perspective and reduce stress. As Barker said in his article, you will probably be able to take that perspective and laugh in a year or so, so why not just do it now?

So there you go. Let go of your dignity just a bit. Celebrate your flaws and all of the disasters. The best people do it. Did you see how Pope Francis laughed when that little girl swiped his cap? Rule 62 Continue reading “Gotta Laugh”

Keep On Keeping On

I gave a client “there is nothing else you can do” speech today. I told him if his relative is not a danger to himself or others, he could not force him into treatment. Doesn’t matter if he is in communication with the fairy people or if he sees the devil in the fireplace, there is nothing my client can do to force him into treatment.

People hate that speech. My client told me he hated when people said that to him. We like to believe in our efficacy, our power. “There has to be a way! Maybe I can try harder, find a better argument, something.”

Accepting there are some things you are not able to influence is a bitter pill.

In at least that way, you folks who have wet AMD are ‘better off’ than those of us who have dry. At least you folks get to actively participate in your own treatment. Granted, getting a shot in the eye is not my idea of a good time, but it is something. We folks with dry AMD get to do…..nothing.

How do you sit there and do nothing when everything is falling apart around you? The thought that you may have to endure for years and years and have no recourse is terrifying for people.

I have talked about the distress tolerance skills but, since this came up and we are actually teaching distress tolerance, I want to revisit it. Distress tolerance skills are not ways of ‘fixing’ anything. They won’t make my client’s relative to not be psychotic and they won’t give me 20/20 vision. What they are are strategies for enduring.

With distress tolerance skills, we get to hunker down and survive the storm, not make the storm go away.

Also said this before but I will say it again: one of the tenets of DBT is “I am doing as well as I can, but I can do better”. No one wants to be a screw-up. We can pretty much guarantee that under their present state of circumstances, most people will be doing the best they can. Given new circumstances and a new skill set, they can do better.

How that figures in here is that I don’t want you to think that using distress tolerance skills to endure means you stop trying. Offered a viable treatment, I, for one, would take it in a heartbeat. Treatment would be the new skill set and how I could ‘do better’. However, until that day comes, I am stuck enduring.

There are several pages on which I talk about the DBT skills IMPROVE and ACCEPTS. IMPROVE skills are used when we are in the midst of a crisis. The letters stand for imagery, meaning, prayer, relaxation, one thing in the moment, vacation and encouragement. [Click here for one of Sue’s past pages on IMPROVE.] ACCEPTS skills are used when we are trying to endure in the long term. The letters stand for activities, comparison, contribute, opposite to emotion, pushing away, thoughts and sensations. [Click here for one of Sue’s past pages on ACCEPTS.]

Lin will probably put the links in, but if not, just search the keywords. There really is something you can do when there is nothing to be done.

Keep on keeping on. Continue reading “Keep On Keeping On”

I Survived the Blizzard of ’17

I survived the blizzard of ‘17!

Not that big a deal but it sounds impressive.

Beastie Baby is generally beside herself, though. Her doggie door is snowed closed and she cannot go for her walk on the tractor path we often use. The snow is just about over her pointy, little head. All of the ‘pee mail’ she wants to answer is under two feet of snow.

Every time we go out she looks around at the snow and then looks at me as if to say “What is going on here? Where is my world?”

It would appear a number of people feel that way, too. Going through town my husband and I noticed dozens of houses that looked like no one had ventured out in the last 36 hours. No attempt at snow removal. No footprints. Nada. Closed until Spring.

Perhaps we are just the intrepid types. Sounds better than saying we are too dumb to get in out of a blizzard; yes? We were the only people to go to the recycling center. I had called. Really, I did. The message said open Wednesday 7 to 5, but it wasn’t. Open, that is. I asked the guy plowing if we could still sort and leave our recycling and he directed us to the back door. One job done.

I was going to write this page on the fine art of asking for a favor, but it turns out the rules in WikiHow are just about identical to the rules we went over in another page (Kicking and Screaming).

Then we were the only customers in Subway. The police came in as we were leaving, but they have to be out on the roads. They are always intrepid.

Then we were the only customers at AAA. When we walked in they were taking pictures of one another! I guess it was to commemorate the occasion of their all being intrepid souls and getting to work.

The online dictionary gives as synonyms for intrepid the following: fearless, unafraid, undaunted, unflinching, bold, etc. I think you’ve got the idea. The essential concept there is overcoming fear. Probably something we should cultivate in dealing with AMD.

Back to the web, I discovered an article entitled 33 Powerful Ways of Overcoming Fear….Right Now. The article runs down the usual suspects. You know, being aware you are afraid, identifying what you are afraid of, journaling, talk therapy. It also talks about some stuff I have never heard of like Emotional Freedom Technique and the Sedona Method. Unfortunately, you can get the ones I have never heard of for “only four monthly payments of….!” Ignore those. They are apparently the way the author pays for his site. Pay attention to the ones he offers for free. [Lin/Linda: You can actually check out the Sedona Method for free, click here.]

Remember, free is one of my favorite words.

Another online article I found was entitled 5 Sure-fire Ways to Overcome Fear and Anxiety Today. This article goes over the basics and uses some of the DBT techniques. It also has its own, catchy acronym: AWARE. This stands for accept, watch, act normally, repeat and expect the best. Accept is the same as DBT and watch is DBT’s observe. Watch/ observe allows you to get comfortable with the fear and the fear to extinguish. That is psychology talk for go away.

This page has gotten a little long. Maybe get back to this topic later. I am apparently going to have some time. Just got the call. No school again tomorrow!

Written March 15th, 2017 Continue reading “I Survived the Blizzard of ’17”

First Link on the Chain of Kindness

“From each according to his ability, to each according to his need.” – Karl Marx

I thought that was from the Communist Manifesto. It appears it is not. It is from the Critique of the Gotha Programme…..Huh?….Nope. No clue. I could probably look it up and give you a full critique of the Critique, but that is too much like work and I rather doubt most of you are all that interested.

What made me think of Marx and his quote – other than my mind works in really weird ways! – was a comment Lin made. She said many people in the Facebook group are concerned about their independence.

I was right there with you folks. There are times I am still right there with you. I would love to be able to drive and have all the freedom that brings. However, as my husband pointed out to me the other day, just about the only thing I have given up is driving. I still work. I still exercise. I still socialize. I get the job done with a few new tools and a little help from my community.

Community – Communism. Like I said, my mind works in strange ways.

These days it is not so much I am independent as I am interdependent. Interdependence is the dependence of two or more things or people upon each other. From each according to his ability. To each according to his need. If you think about it, that is exactly the way a community is supposed to work.

The other week I paid for a young lady’s skiing. I wanted to go and she could get me there. Her problem was money. My ride home from school is devout but knows little about the Bible she has started to read. I am not devout, but know more than she about the Testaments. We sometimes do a Bible study on the way home. I need a ride and she wants the information. (Proving the old saying that even the devil can cite Scripture?)

And it does not have to be a direct exchange. Sometimes I ‘pay’ the people doing something for me by doing something for someone else. Passing on the favor is a great way to improve your day as well as the world. You might even want to pay it forward and do something for someone who has never done anything for you just ‘because’.

Start the chain of kindness and be the first link.

Which brings up another thought: I suspect many of you are of a ‘certain age’. I also suspect many of you have done for your community for some time. Don’t forget you just may have a positive balance in your community account. It is alright to occasionally make a withdrawal.

Perhaps what I am saying is, to a certain extent, independence is a delusion. We have all always been interdependent. With a vision loss, you just become more so.

How can you contribute to your community? What do you need from your community? From each according to his ability. To each according to his need. Together it really is possible to maintain lives worth living. Support one another. Take the support you need. Continue reading “First Link on the Chain of Kindness”

Mr. Magoo!

Here we go with the crazy, preconceived notions again. I told you I was at my third job. First time in months but I understand. It is a major event to get me there and get me home. Anyway, a colleague there looked at me with my glasses and looked perplexed. She wanted to know where my big, thick glasses were!

Now this is an intelligent woman with advanced degrees. If she is thinking this, what are other people thinking?

Basic tutorial, just in case: corrective lenses, especially the big, thick ones, are for errors of refraction. Refractive errors occur in the front of the eye. There is a malformation of the lenses that causes the light to bend ‘wrong’ and focus either in front or behind the retina. The same thing can happen if you have an eyeball with the ‘wrong’ shape. Some eyeballs are long and ‘skinny’ and others are short and ‘fat’. In either case the light does not focus on the retina and things are out of focus.

Corrective lenses bend the light. They do it in such a way that the light will fall properly on the retina and we can see clearly.

There are two, main types of refractive errors. Myopia, or nearsightedness, makes it hard for us to see things far away. Hyperopia, or farsightedness, makes it hard for us to see close up. There are also astigmatisms. I don’t know a lot about these but I think they distort things because of imperfections in the lens. They can also be corrected with glasses.

Age-related macular degeneration, as most of our readers know, is a problem at the back of the eye. Bluntly put, our maculas are dying. Maculas are parts of the retina, located at the back of the eye. The only type of ‘corrective lenses’ that may help AMD are prisms. They relocate the image off the macula and on to a part of the peripheral retina, a part that should still be functional. [Lin/Linda: prismatic glasses don’t work for everyone with AMD. Click here for an article about them.]

So that is pretty much that. AMD is not a refractive error and is not going to be helped with ‘coke bottle bottom’ glasses. We are not all Mr. Magoo!

There are many, many different types of eye disorders. Most of them are not correctable with glasses, but the average person does not appear to know that. Once again it appears it is up to us to go out and educate people.

We are not all Mr. Magoo! Continue reading “Mr. Magoo!”

Domestic Goddess – Not!

OK.  I own it. Said it before. I have never and will never be a domestic goddess. I have never been a virtuoso in the kitchen. And you know what? I have no serious desire to do so.

I can do basic cooking. Both of my parents were able to make meals we did not mind eating and that kept us fed. My father was the world’s strongest proponent of meat, potatoes and a vegetable.

The first time my mother made spaghetti, we came home from an errand to find Daddy peeling potatoes! Did not matter the pasta was the starch; if you had dinner, you had potatoes!

So, I can boil potatoes. I can also bake them. I can make pot roast and soup and chili con carne and spaghetti with ‘doctored’ meat sauce, but I don’t cook often. Anything you can do in a microwave often becomes dinner.

As I was just microwaving my lunch, I started to think about nutrition. I get school lunches three times a week. Other times, if my body is telling me I need to eat something that will actually NOURISH it, I cook. (Big believer in listening to your body here.) But what about people who cannot do that? What if your vision or another infirmity makes it so you are required to depend on ‘quick and dirty’ for your meals?

First of all, school lunches. I cannot find it, but I could swear that under the government program that distributes ‘extra’ food to schools, there is a stipulation that says the elderly can eat in school cafeterias. Full of canal water? Possibly. If anyone actually knows, let me know. That one is a maybe. [Lin/Linda: I couldn’t find anything like that, sorry.  It’s a good idea!]

Meals on Wheels is an option in most areas. Daddy was not always crazy about the selections they had and the delivery schedule left something to be desired, but the meals were guaranteed balanced and nutritious.

Canada runs their own Meals on Wheels program. The U.K. appears to have something similar in the Meals at Home/Meals on Wheels program.

Then there is the whole slew of microwaveable dinners available at the grocery store. There seems to be a wide range of them with wildly varying food values.

Eat This, Not That! either has stock in Amy’s and Kashi’s or those companies make very good products! Those companies come up a number of times in The 46 Best Frozen Foods in America. Check out the link for the rest of the manufacturers.

In their article 10 Frozen Dinners That Pass the Nutrition Test, NOLA (New Orleans newspaper website) also recommends foods by Kashi, Amy’s Kitchen, and Tandoor Chef. Other companies are Evol, Artisan Bistro, and – names I actually know – Healthy Choices, Lean Cuisine and Weight Watchers.

Most of what was recommended is decidedly not meat, potatoes and a vegetable. Daddy would look askance at more than several of the choices suggested. However, if your tastes are different from what my father’s were I would suspect you can find two or three that you can eat.

Decent nutrition even a few times a week is better than none at all.

P.S. If you are looking for breakfast cereal, Cheerios and Total come in 9 and 10 in a listing by Greatist!.  Of the 20 Cereals That Are Actually Healthy, the top three were made by Barbara’s. This may a Canadian company although there are distribution centers in California and Kentucky. All I know about them is what I have read online. Continue reading “Domestic Goddess – Not!”

Hike and Bike

Morning! I thought I was getting my routine back but I apparently was not totally accurate. I will be able to be in my exercise routine for a week – 7 days – and then it falls apart again. The Y is closed next Saturday for spring cleaning! Grrrrrrrrrr!!!!!!!!!

Maybe I can talk my husband into loading me and the bike into the car and taking me to a local rails to trails. Assuming they are all over the US but for our international readers, the United States made the (foolish) decision to send much, if not most, of the goods and people transported in the country by trucks and private cars. That left thousands of miles of abandoned rail beds. Many of them are being turned into walking and biking trails. Since there is no motorized traffic allowed on them and very few crossings, they make good places for low vision folks to exercise.

According to the website there are almost 23,000 miles of rails to trails in the country. I would be surprised, if you are in the USA, if you were located very far from one of those. There are four, two of them quite long, within 45 minutes of my house.

The two shorter ones are going to be connected soon. There are efforts to connect sections of trail all over. Or at least that is my understanding. That means people will actually be able to do bike trips of several days long if they wish, and they can do them on safe, easy riding trails.

Or, they can go out and back on a two-mile trail like I have generally done. However, in my own defense, that was when I had good vision and I could ride my bike almost three miles to get there.?

My biking goal for the summer is to get someone – anyone! – to take me to the D&L (Delaware and Lackawanna, my grandfather was an engineer for them) trail. The section I have ridden and intend to do again is 26 miles long and goes from White Haven to Jim Thorpe.

26 miles sounds impressive, but it is not as bad as you may think. This section of trail is almost totally a 1% downhill grade and an easy ride. That is a good thing about rail beds. Often with only one engine and upwards to 100 cars, you did not want to be going up or down hills much steeper than that. Most of the rail beds, in Pennsylvania at least, have very easy slopes. (Slope is rise over run; remember?)

Canada has the Great Trail. I know nothing about it except the website says it is extremely long, 24,000 km which translates to approximately 14,600 miles. Sort of sounds like the AT on steroids. Check out the section you might be interested in for accessibility data.

The AT, Appalachian Trail, approximately 2,000 miles, Maine to Georgia. The section I know is a true ankle breaker and I would not recommend it for people who cannot see their feet. To prove my point? A blind man who hiked the AT was written up in extreme sports magazines! That was Trevor Thomas. He hiked the AT in 2008.

He was not the first, though. Bill Irwin, also blind, hiked the trail in 1990.    [Lin/Linda: Here’s a YouTube video from behind the scenes of the movie about this called ‘Blind Courage’ which is to be released in 2017.  Click here to get the book that he wrote called Blind Courage – it’s available as a Kindle e-book or through his website link.]

That said, there are easier sections. Check out your local section online or talk to a local hiker. A little research, a few modifications and my guess is you can get out and enjoy. Have fun! Continue reading “Hike and Bike”

Adventure Girl

Nine days after the ‘big storm’ and I am still struggling to get back to my routine. I think I am back and something tosses me out again. My ride cannot take me as planned. My third job wants me to work and I cannot get back to town in time for activities. Etc. Etc. I am getting very weary of having my life in a jumble.

Recently I have either been hustling to make other arrangements on the fly – cannot very easily stay at school all night! – or just trying to accept the situation is what it is and I must deal with staying home or doing without or whatever. All of which takes a LOT of mental energy.

I know I have mentioned the value of routine, but I just looked and did not see a page dedicated to it. Guess I should change that.

I am an ‘adventure’ girl. When the nephews were small, adventures were standard fare. That said, I also value predictability in life. Adventures are fun because they stand in contrast to the mundane and routine. It is, in fact, a dialectic. One helps to define the other. Without one the other cannot exist.

Routine is a necessary part of life. It structures us and ‘pulls’ us along in our day. With routine, you don’t really have to think about it but your days get filled with meaningful activity.

In 2010 when 33 Chilean miners were trapped underground for 69 days they survived and maintained reasonable levels of sanity and civility by establishing work schedules and routines. Pretty amazing.

Routine can help in smaller crises, too. (AMD may not be a walk in the park, but it is not being buried meters and meters below ground either!) People agree that routine can structure your existence. It gives you a consistent direction and you are able to act instead of constantly making decisions and new arrangements. The mental energy you save by not having to decide what happens next can be channeled into areas that it is really needed or even into doing something creative.

When you have a routine things just seem to flow one into the next, building momentum and reducing the need for willpower. Besides the article I have been quoting, Why Having a Daily Routine is Important, I also found a number of online articles that recommended routine as a way to battle depression. Why? Structure. Momentum. Not having to think about what comes next.

Routine can get you going even if getting going is the last thing you want to do.

No, I am not depressed but I would really like my routine back. I like pretty much knowing where I am going and what I will do when I get there. I don’t like having to improvise again and again when things are not running smoothly. I am flexible but prefer not to be bending over backwards or wriggling through knotholes too very often.

Having a strong set of habits and routines that I liked and wanted to get back to was helpful in February, 2016 when I lost my second eye and things went to crap for a while. Routine may help you in the same way. Worth a try.

written March 24th, 2017

Continue reading “Adventure Girl”

Eating Our Way Around the Globe

Hi. I have walked the dog, dusted the house, done the laundry and watered the plants. Plus a few other things like washing dishes. Twice. I even had a good lunch. OK, it was fish sticks but I had a piece of sweet potato and peas, too. Better than yesterday. That was popcorn. I think I deserve a break.

Lin is going to shoot me. Pretty much all I have done this weekend is write?. More for her to edit! [Lin/Linda here: it’s a good thing I love you, dear.  ::smile::]

But housework bores me! I got thinking about Summer. Thinking about vacation. We will probably put off our ‘big’ vacation until Fall, but we could still do a few small things this Summer. Where do the in-the-know low vision people go?

‘Big Jim’, whomever that might be, put together a nice list of options. First one on the list in 20 Best Summer Vacations for Blind People was skiing! That was a bit of a surprise. Especially since he was supposed to be talking about SUMMER vacation. He also suggested mountain biking on tandem bikes and zip lines. Big Jim sounds like an action adventure guy.

For those who are seeking a more sedate pastime he suggested things like music and food festivals. Also wine tasting and day spas. I could probably handle those, too.

Big Jim also suggested theme parks. If you ‘own’ a child or have the capability of ‘renting’ one, Legoland was a recommendation. [Lin/Linda: I thought it interesting that it says “However, to keep out the nerds the park requires all adults to be accompanying a child.” Sue, you being a child at heart won’t work here! ::smile::] When I looked it up I discovered there are 17 Legolands including ones in Tokyo and Istanbul. The websites have accessibility information for the physically handicapped but not for visual impairment. Looks like a lot of cool rides and activities, though!

Disney World was on the list. Leave it to Disney to have actually done some special things for guests with low vision. If you go to their guest services page, you will see Disney offers at least three accommodations. These are audio description devices, Braille guidebooks and stationary, Braille maps.

Service dogs in harness or on a leash are welcome. Hey, Fido, where are you going after guide dog school? I’m going to Disney!

There are 12, specialized guest services locations scattered around the park. These are especially for us low vision people! I have no clue what other specialized services they may offer but it is nice to be considered.

Check out the list Big Jim compiled. Our big trip in the fall will probably be a cruise. Cruises are on the list. However a friend has already promised to take me to another local, blues festival and I keep eyeing the New York International Food Festival. I could get there by bus. Who wants to meet me? We can eat our way around the globe! Continue reading “Eating Our Way Around the Globe”

Chiefs & Indians

I like to be in charge. Not much of a revelation that. I generally have an idea of where we should be going and how we should get there. I like to make sure all the details are ‘right’. The best way to be sure things are done correctly is to do it yourself; right?

Therefore I really do understand when someone else has the same mindset. I do. It just kills me to have to be one of the ‘Indians’ and not the ‘Chief’.

Oh! Oh! Short funny story. Years ago I called tech support for a prepaid cell phone. The girl on the other end, speaking in heavily accented English, was just about zero help. I finally said to her “That’s alright, honey. I need a Chief and you’re just an Indian.” Her reply: “No, ma’am! I am in Argentina.”

Dum dum, dum.

You might have to be a Yank to get that, but I thought it was hilarious.
Caught me totally of guard.

End detour.

Having to be a team member and not a team leader is the topic. Sometimes it even happens that you think you are on the team but the leader is doing 95% of the work. Been there?

I looked online for ideas of how to step back graciously. Found some stuff in thebalance.com about leaders teaching and bowing to the expertise of others. Good stuff but not exactly appropriate to my situation.

The balance.com also had some stuff about when to take a voluntary demotion. That was what you would expect: when you are ignoring other areas of your life, developing stress related illnesses or cannot keep up because of impairments, etc. Again good stuff but not quite the ticket.

The one on ways of handling an involuntary demotion came closer. Michael Roberts points out a ‘demotion’ does not have to be the first step on your way down. It may be your are no longer on the proper staircase. You need to step back to the common landing and go up the other way.

Roberts suggests assessing what happened. Was it mostly performance factors or the situation? Since I really did not even have a chance to show my ‘stuff’ on this project, I would say it was the situation in my case. Another time it could easily be performance. Expect me to do a job with a heavy vision load? Not happening.  Roberts also suggested you look for the lessons. What did you do wrong? What signs did you miss that things were going awry? You should be better prepared the next time.

Adjusting your budget does not count in my situation. This is a volunteer project. If you are seeing your work slipping or getting more supervision than normal in your job, consider AMD is having an effect, may have more of an effect in the future and you NEED to look at finances.

Next to last one listed was do a good job where you are now. There is no benefit in fighting for the lead on this project. In a few weeks it will be completed successfully. I have found a few things I have been ‘allowed’ to do ? and I am doing them well. Whenever I hear something mentioned I can do, I volunteer and get it done.

Last suggestion was to re-evaluate career goals. In this case that means I need to recognize I am not free to run around and get everything done. I don’t drive any more. However, I am still great at brainstorming and I hang a mean advertising flyer!

In short, I don’t have to be in charge to contribute. No matter how much it kills me! Continue reading “Chiefs & Indians”

Stop & Smell the Roses

Hello again. I am facing a transportation crisis. My ride to the Y on Saturdays is taking six months to train as a yoga instructor. Six months of Saturdays she won’t be going where I am going. Sigh.

I do not begrudge her her dream. She will make a great instructor. Just a minor inconvenience but I have started to assess my resources. I have started to network and reach out. You don’t know if you don’t ask. What can they do? Say no? Big whoop.

I was asking about posting a sign or something, asking the girl at the desk. A woman I had never seen before joined the conversation. She comes past my house on the way to the Y. She had just started Zumba and exercise in general. Being responsible for me would get her to class. She was going away for a few weeks but she might be able to give me a ride when she got back. I could live with that.

Moral of the story? a) You don’t know if you don’t ask. b) There are a lot of good people out there. c) God works in mysterious ways. d) All of the above.

Moving right along. This morning yoga class started with the reading of a commentary on a stunt the Washington Post pulled in 2007. The Post put Josh Bell, a violin virtuoso playing one of the finest violins in existence (crafted in 1713 by, of course, Stradivarius), in a subway station and asked him to play Mozart. This is a man who packs concert halls around the world. His violin is priceless.

The statistics from this little adventure were as follows: 1,097 people passed by. 7 stopped for more than one minute. Bell made $32 and change.

The commentary and articles I found alluded to Matthew 7:6, “do not throw pearls before swine”. I would prefer to think that is not an accurate application of the Scripture. I do not believe we are all so brutish the finer things are wasted on us. I would prefer to think many people, as I often am, are just too taken up with day-to-day life to even notice the extraordinary let alone stop and take it in.

While no one enjoys sensory loss, having low vision may actually give some of us time to stop and listen to the Josh Bells of the world. We might now have fewer responsibilities and more time to be mindful, more time to be in the here and now.

How many extraordinary things do we ignore because we are ruminating over something that happened yesterday or that we are worried about happening tomorrow? My father would call it stopping to smell the roses and he always told me I needed to do more of it.

I cannot honestly say I am mindful of the extraordinary. I would like to think that should I find a Stradivarius being played in a subway, I would kneel down in awe and reverence. However, I am realistic to know that is a bit far fetched. I would probably be one of those thousand plus people running for my train. Not exactly proud of that.

How about you? Continue reading “Stop & Smell the Roses”

Accessibility by WAH