Category: Self Help

Now What?

There is a Zen saying I came upon: “Leap and the net will appear.” It, of course, speaks to faith, faith in yourself, faith in the Universe and faith in a Higher Power. I am leaping and I am scared to death.

Today is the last day of my school job. I woke up at 2 am in a panic. I have had this job since 1978! Even though I have been planning for “now what”, I still keep thinking “now what?”.

“Now what” is a momentous question. It contains a whole lot of stuff. The Buddha said (and no, this is not a Buddhist blog. I just keep coming upon Buddhist quotes and they resonate. If you have a Bible quote or a Quran quote that applies, please share). Anyway, to start again, the Buddha said suffering comes from holding on to what you can no longer have, to what you don’t have, to what you can never have. Some Westerner boiled it down to “happiness is wanting what you have.”

Okay, so letting go and moving on can reduce suffering to pain. I am trying hard to pull my fingers off from around holding on to what I no longer have. Think this is easy? Try it sometime……oh, wait. You have!

I suspect just about everyone who is reading this has macular degeneration. After all, that is what this site is supposed to be all about. (And yes, I recognize I go off on major tangents more than I truly should). I also suspect every one of you has asked the question “Now what?” Now what after a sight loss, now what after leaving a job, now what after losing a driver’s license.

The problem is, I can barely answer that question for myself. How in the name of all that is Holy can I expect to answer it for you? Nope. You are sort of on your own there.

What I can tell you is there is only suffering from holding on to what you don’t have. A very wise man said that several thousand years ago. Moving on is the way out of the pain.

So, we leap. We are not sure there is a net there. We trust there will be…or we weave one for ourselves on the way down.

We don’t have to be brave. We don’t have to deny the pain. Hell, I have been in tears half of the day. All we have to do is have the faith to jump. We will be saved.

Leap and the net will appear.

[Lin/Linda: I, too, am leaping.  After quite a few years of not being employed and at age 65, I leaped into a profession I knew nothing about, one where I will be held to high standards, one that I may not be able to continue due to my physical restrictions. Is there a net? I hope so!  We are all on this journey called life together!]

Written June 6th, 2018

Next: Patience…or Not

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Life’s Transitions

I had to get transportation home from school today. Although home and school are less than ten miles apart, it took me an hour and a half to get home. One of the riders lives in the hinterlands, God’s country, call it what you will. The bottom line was this: we went baja-ing in the short bus. [Lin/Linda: I had to look up ‘baja-ing’ – also spelled ‘baha-ing’ – in the Urban Dictionary.  It means “To cruise around on a motocross bike, four-wheeler, big pickup truck, jet ski, speed boat or some other vehicle where you may experience excitement by jumping dirt mounds, waves, or some other form of obstacle.” I’ll email them to add ‘short bus’! ::grin::]

Good thing rural Pennsylvania is pretty country. The roads were not. Potholes, ruts and mud. Also kids riding horses, as well as deer, dogs and goats – yes, goats! – all in the road. The goats were hanging out near a house with a sign, “not my goats”. The resident may have put up the sign in self-defense, but the humor was delicious. Especially since we had already been riding for an hour!

I needed that humor. It punctuated the ‘fact’ my life can be a comedy of the absurd and sometimes the only thing to do is to sit back and enjoy it. When baja-ing in the short bus, be sure to notice the goats!

I needed the humor because I am embroiled in a big life transition right now. Retiring from school and approaching 65 have got me reeling. Pick a retirement plan. Pick a Medicare plan. Find health insurance for my husband. HOW much?!?!? Find cheaper health insurance for my husband. Check what will happen to my state certifications. Good grief.

Then there is the stuff at the counseling center. Launching a BIG project there. That ‘free’ training we got the other week is going to be paid for with sweat and aggravation.

How to handle transitions. Carefully, very carefully; right? Psychology Today had a piece about ten ways to handle life’s transitions. That piece talks about moving as an important transition but I should think leaving a job, sight loss, that sort of thing would be just as important. I would suspect the “ten ways” would apply in some ways. Ya think?

Anyway, Psych Today suggests we give the devil his due. Transitions are important and they need to be acknowledged, not shoved away and never thought about. Painful or not, these times define our lives.

Then there is the question of attitude. Threat or challenge? Good or bad? I have yet to be jumping up and down with joy about retirement or sight loss, but I have tried to find meaning in them. Remember Viktor Frankl said, to paraphrase, sometimes the dignity with which you handle your challenges gives the pain of those challenges meaning. Focus on the positives whatever they might be.

Then of course, there are supports. Turn to your friends. Turn to yourself! We haven’t all gotten this far without some successes. That successful person is still in there and ready to help. Take confidence from all she accomplished. You can do it!

That brings us to role models. If you cannot be a role model for yourself, find someone to show you the way. There are people who have walked your path before you. They got through it and so can you.

Written May 23rd, 2018

Next: Shine a Light Under the Bed

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That Little Summer Dress

I bought a little, summer dress the other week. It has paisleys on it. Paisleys!  Everything old is new again. I don’t believe I have worn paisley since high school. Remember the Beatles Summer of Love (1967)? [Lin/Linda: Long live Beatlemania!]

Anyway, that is just a bit of nostalgia to help us feel more positive.  In truth, I am writing about the dress because it – and what I have on with it – represent a bit of, well, defiance on my part.

Now I have you curious.? I will let you mull a second before I tell you.  Nothing bad. Capri leggings and sneaker ‘slides’, no backs on the shoes. Bright red. Definitely not a little, old lady outfit.

I have been having some problems with the people putting on this week-long seminar. They have been reasonably OK with my being visually impaired. (Like they have a choice? I am not above screaming ADA.) The problem is they arranged for continuing education credit for social workers but not for psychologists! They are now scrambling to try to rectify that little oversight and I am wondering if it is still worth my going!

I got very judgmental about this oversight. Just because psychologists will be in the minority, just because we are different, we should not be ignored!  What rude event managers!

Then I felt bad about being judgmental and thought about conforming as much as I could and keeping my mouth shut.  We different people can be such bothers!

Then I started thinking how I have a right to be different, to be me. Next thing you know I have on my paisley dress, leggings and red shoes and I am off to work! So I am different. Deal.

And the DBT skill that is? Opposite action to urge. I had the urge to just slink away but, since I had done nothing wrong and there was no reason for me to feel I was wrong by being different, I did the opposite to the urge and presented myself as even more different!  My action was opposite to my ‘wrong’ urge.

Thinking about the above situation made me wonder how many of you feel guilty about being ‘different’, about being such ‘bothers’ to the rest of the world. Who just tries to muddle along without any special consideration because you don’t want to put people out?

Goodtherapy.org did a 2013 article on shame and the disabled. Shame is different from guilt. Guilt is feeling bad for what you did. Shame is feeling bad for being who you are. Goodtherapy reported people can limit themselves severely because of the shame they feel about having a disability.

In a 2010 posting on intentblog.com RainMacs the blogger, talked about snarky comments and feeling paranoid about being “found out”. This was  even though she was not faking!

Most of the posting I found were blogs with very few of them being research. Sort of surprising I did not find a lot of research because nearly all of the blogs mentioned guilt and shame as emotions of those with sight loss. No one seemed to pick up on that as a research topic.

So to recap:  I am different. Sometimes I feel guilty about that. Sometimes this square peg would really like to fit into a round hole. Sometimes it would be nice not to have to ‘inconvenience’ people.

Then I stop and ask two questions: did I do anything wrong? Is there something inherently ‘wrong’ about me? If I can answer “no” to both of those questions, I put on a cute, paisley dress with leggings and bright red sneakers.  And that difference about me? I flaunt it.  It is alright to be me, flaws and all.

This little light…let it shine, let it shine, let it shine.

Written May 4th, 2018

Next: I Need a Sherpa

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The Power of Expectations

I like people. I really do, but every once in a while they drive me insane. (Then I drive other people insane complaining, but that is a different page!)

The most recent thing is this retirement nonsense. When people hear I have decided to leave my school job, they conjure up their own retirement fantasies. Then they project them on me!

Now I know projections are more about the project-er than the project-ee  but their expectations of what I would do in retirement gripe my cute, little ol’ lady tushie. Do they really know that little about me?!?!

Then I started thinking about expectations. Everyone has expectations of everyone else. Some of these people ask if I am going to do ‘fun’ hobbies, like gardening. (The last time I played in the dirt was the Dirty Girls charity mud run about 8 years ago!) Others expect me to sit in my favorite chair and watch daytime TV. None of the stuff they expect I will do is ‘me’.

The problem with expectations is this: they have an effect on the person at whom they are aimed!  It has been proven scientifically a couple of dozen times. Many years ago Robert Rosenthal randomly picked elementary school children and told their teachers they were the children a test had predicted would flourish that school year. One guess who just blossomed that year.  That was the power of expectations from others.

Then there is the power of our own expectations. Ever hear of the placebo effect? Yep, that is the power of our own expectations at work.

Now so far I have mentioned positive effects of expectations. Expectations also work the other way. In the winter 2018 Education Next they concluded racial bias negatively effects student outcomes.

Now what about expectations of the visually impaired? I suspect every one of you has dealt with the expectations of others. Some people – probably few and far between the truth be known – expect you to function as well as always. Others put severe limits on you. How could she possibly do anything? She is visually impaired!

Last year Kristen Smedley wrote for The Mighty about having to revise her expectations for her two, blind sons. She went from having dismal expectations to realizing the only way her sons were going to achieve anything at all was for her to believe in them and expect the best they could give. It payed off.

So, what is my purpose here? Well, other than to rant about how people expect some pretty strange things from me in the years after my retirement from school, I imagine my purpose is to warn you about the power of expectations. Don’t sell yourself short. Don’t let other people sell you short.  Low expectations lead to low achievement of goals. And in our class, low achievement of goals means a lack of independence.

Believe in yourself. Get others to believe in you. Harness the power of expectations.

Next: coming soon!

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All You Have to Lose

Morning. Do you ever think that if it were not for feeling stressed you would feel nothing at all? Yep. Insanity still reigns. Just when I got things going the right directions with retirement and the webinar we need to listen to – not to mention other work for the psych office – the accountant sends the tax forms back. What I thought was going to be a credit is a debit. Somebody made a blunder. One hint: not me.

So, you may be hearing from me requesting bail money, but in the meantime I am going to use some skills on myself.

They have made some additions to the DBT skill set since I was trained. We are finding them in this webinar. One thing they are stressing is the brain-body connection. They are talking sympathetic and parasympathetic nervous systems, Vagus nerve and all that good stuff.

I know I hit on this a bit before. Bear with me. There is some neat stuff here and if you get very, very stressed out by life, the state of the world and/or the state of your vision, these things might help.

First of all, ever hear of the mammalian diving reflex? That is what happens when the toddler falls in the frozen river, is fished out from under the ice half an hour later and lives, no worse for wear.

Bending over, putting cold water on your face and holding your breath (15 seconds or so at a time for our purposes) will trigger this response. The reason we want to trigger it is it is fantastic for reducing stress reactions. Flipping out? Ice on your face, bend at the waist and hold your breath. It is sort of a quick, temporary fix but sometimes that is all we need.

There are other ways to stimulate the parasympathetic nervous system. That is the system that brings us down after the sympathetic system revs us up. For one thing you could eat a sour candy. Getting the saliva flowing is one way to reduce stress. Then there is always a good yawn or three or four. Yawning kick-starts the parasympathetic nervous system as well.

One of the distress tolerance skills we teach in DBT is distracting with thoughts. For a long time I thought it was distracting with complicated thoughts like doing calculus in your head. It potential could be, but it can also be simple, repetitive thought. In fact, simple repetitive thought function to disrupt the action of the default mode network of the brain.

According to Wikipedia the default mode of the brain activates when we are thinking about others, ourselves, past and future. Hmm….sounds like brooding and worrying to me.

A great way to block the action of the default mode and reduce worry is to do something verbal that is repetitive or tedious. You can mentally count or say the alphabet. Name the 50 states. Think of a name that starts with each letter.

Or you can go old school. How about the Lord’s prayer or om Shanti, Shanti, om? There are hundreds of mantras, religious and secular. Find one you like and repeat it over and over. All you have to lose is your worry.

Next: Different Paths

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Not My Fault, Not Your Fault

The combination of puppies, visually handicapped 64 year ‘young’ me and electric appliances is not going well this week. My watch got (four!) legs and walked. I managed to ‘kill’ the first floor vacuum and seriously ‘wound’ the second floor vacuum. Puppies leave things on the living room floor that I don’t recognize until it is too late. Apparently the little darlings play with things that should not be in the diet of a vacuum cleaner!

Not sure how to solve that problem. Probably just wait for the puppies to grow up. Heaven forbid that I should actually get on my hands and knees and pick everything up!

Last night our local telephone and internet providers had a few problems of their own. Of course, with all of my devices non-operational, I had no way of knowing it was their problem and not my problem. I assumed it was my fault and spent quite a bit of time trying to track down what I had done wrong.

I was not the only one. Talking to one of my gym rat friends this morning I discovered she had had the same concerns. She was convinced it was all her fault too!

Then to top things off, I had a client yesterday who blamed himself for the poor adjustment of everyone else in the family. Self-blaming appears to be rearing its head all over these days.

Never one to miss an opportunity for a page, I looked self-blame up on Wikipedia. It appears there are several theories that link self-blame and depression. There is also some indication that self-blame can have a negative effect on how you adapt.

Of course, then I thought about all you fine folks who may actually believe you have caused your vision loss. Those who play the “if only” and “I wish I had” game.

Sometime in your life, I assume you have heard the saying “hindsight is 20/20.” There is no way you can predict and prevent everything that may happen to you. It truly is what it is. We do the best with what we have. We have no way of truly knowing the future. We make the best decisions we can with the information available.

And something I often say to client: do you really believe you are so omnipotent that you can control everything that happens and the way that everyone feels? If you are truly that wonderful, I would like a few stock tips or at least some idea who was going to come in first at the local race track! If we try a little argumentum ad absurdum we can really spin this. Assume that you are omnipotent and in charge of everything? Perhaps you are a deity! ?

In short, blaming yourself for what has happened to your eyes is nonsensical. Do we all have bad habits? Absolutely! Have I told you about my diet? But I also watch my weight and exercise. Those are supposed to be good preventative factors; yes? What happened?!?!

Unfortunately, I have all sorts of static variables that give me a predisposition to AMD. Not much I can do about it. It is what it is. Not my fault. Not your fault. In the end, it just is.

Written March 3rd, 2018 Continue reading “Not My Fault, Not Your Fault”

Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

Continue reading “Keep an Open Mind”

Just the Facts

It is still Friday evening, January 26th, and I would like to do another DBT page about what I taught this week. If you are not up for any more DBT you can stop here and I will not be offended. [Lin/Linda: For those who are just joining us, DBT is a cognitive behavioral treatment used by psychologists like Sue.  To read more about it in Sue’s pages, choose the Category ‘Cognitive Therapy’ that you’ll find either on the side of this page or at the bottom. The pages will come up in reverse chronological order so start at the bottom and work your way up! Wish I could change that but so far, no luck.]

This week I taught justified and unjustified emotions. An emotion is justified if it fits the facts of the situation. Could someone else, as in not you, understand your reaction based on what happened?

If your emotion matches what is happening, it is probably justified. If it does match what has happened, it may be unjustified.

Now, some of our students this week did not like that idea at all! We got all sorts of comments about how someone who would say there are unjustified emotions would be so invalidating and who gets to tell me my emotions are unjustified, anyway?

The person who gets to say if your emotions are justified or unjustified is you. You do that by looking at the facts of the situation and asking yourself if your reaction could have been predicted from those facts. Notice I used the word ‘facts’ twice. We are harnessing our reasonable/rational mind here.

If, being in your rational mind, you decide maybe, just maybe, reality and your reaction are not matching up, the reaction could be unjustified. Then you need to check your ‘programming’. What beliefs do you carry that would have caused you to possibly misinterpret the situation? What is there in your belief system that would have interpreted it that way?

Suppose a neighbor tells you her daughter is paying for her own wedding and will have a very limited guest list. “Sorry, you are not invited.” You are furious and raging because it is obvious -obvious !!! – they do not want you there because of your vision loss.

Where did that come from? Perhaps you feel as if you are a burden to people or that you are less valuable than the people she invited. After all, they can see! Your reaction is fury because you are explaining her action with your own assumptions, not the facts at all. What might be a justified reaction? Disappointment. Maybe sadness. Fury does not match the facts.

Some people justify their reaction based on the intensity of the emotions they feel. If you are the angriest you can ever remember being, there is a reason for being angry; right? Not necessarily. The intensity of the emotion does not make the emotion justified. Would you be so angry if someone else had acted that way towards you? Was it how you feel about that person or really the situation?

In fact, it has been my experience that the most intense emotions are the ones you need the most to investigate. Unless you are dealing with an extreme situation, extreme reactions are generally not called for. Step back and ask yourself what is happening. Why this reaction?

With vision loss, especially recent loss, we are going to be more vulnerable. With our insecurities and preconceptions about people with vision loss, we may have some pretty intense reactions to some of the strangest things. Step back. Would someone else think this reaction fits? Which of my assumptions is fueling my emotions? Am I justified in feeling this way? Adding a little observation and reasonable/rational mind can help us navigate our situations.

Written January 26th, 2018 Continue reading “Just the Facts”

Let Us Try

Happy Monday! Martin Luther King Day in the US so there is no school. I forgot and had my ride scheduled so I had to cancel. Oh well….

Home and doing odds and ends. Lin reminded me it was the end of January two years ago I started on this ‘adventure’ in earnest. I should have given it more thought myself. It is now ski weather here and I have been trying to find ways to the slopes. People don’t like to give me the time of day when I contact organizations.

They imagine being in charge of some decrepit, old, blind woman flailing her white cane as she flies down the slope! Not exactly the case. Many of us are actually very competent and independent given our vision losses.

Vision loss bring up thoughts of skiing? Yeah, sorry. It was right after a glorious day on the slopes that I ‘lost’ my second eye just about two years ago. I was in a tizzy. But keep in mind, I was skiing three times last year (thanks to my husband and the daughter of a friend) and I am going to try to get there three times this year. And if I get there and discover I am no longer capable? I tried.

That is probably one of the things I like to preach about vision loss, or at least my level of vision loss. (You can never tell how you may react if given a greater challenge so be kind to yourself). You never know until you try. There are all sorts of ways to skin the proverbial cat (although I am not sure why you would want to!) and you just may have to try a few of them before you hit upon one that works.

The flip side of that coin is this: if you are a caregiver, friend, spouse, child, whatever to a visually impaired person, give us a chance and let us try. As long as we are not going to cause mayhem or mass destruction, what is the harm? Sure, be there to bail us out if you insist, but let us try.

Now remember, I am not talking about operating heavy machinery – yes, such as a car – but walking, skiing, riding a bike, even things like using the microwave or the washer; I am pretty sure many of us can have those things covered if given the chance.

Our vision loss has taken away some of our independence. Please don’t take away the rest.

When we started this project, I was asked what I thought others could do to help the newly visually impaired. I said it would be to support that person in continuing to be herself. Looking back, I agree with myself.

So I guess my message for our second anniversary would be this: Find ways to be you. AMD has taken part of your sight, not part of your soul. Find people who will help you to remain yourself, foster your talents and promote your interests. If they are not in your life now. Find them.

Remember, you need you and we need you, too.

And now I guess I need to try somebody who will give me a ride to the slopes!

Written 1/15/2018 Continue reading “Let Us Try”

Sight Loss as a Challenge

Greetings. I have a dozen things to do and very little done. Maybe writing a page will help to get me motivated.

I read the pages from our two, most recent guest authors. Great pages from what sounds like two, good people. They both sound like people who took their vision loss as a challenge rather than a death sentence.

People who may have had to let their disability slow them down but never let it stop them.

Right now i’m pretty sure there are some of you who are bristling about that last paragraph. How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!

I touched on this a little before but I want to go into this concern in a bit more depth. Acceptance is not resignation and resignation is not acceptance. Acceptance is acknowledging a set of less than ideal conditions exist. For example: I am losing my sight. Acceptance also means acknowledging there are some things you have to give up or some new strategies you have to adopt in order to get by. Acceptance allows you to test the environment and make the allowances needed to move forward.

Resignation is not acceptance at all. Resignation means giving up. It is ripping your clothes and throwing yourself on your proverbial sword. Done. Over. Finis.

I know people who have given up. After all, “I is a psychologist; I is.” They moan. They complain. They lament the truly raw deal they have gotten from life.

What is left for these people? Not much. Not if they don’t learn to accept their situation. Resignation is a dark pit with no ways out. Acceptance allows you to see the branching tunnels with the glimmers of light at their ends. Acceptance makes room for hope.

There is a saying, “happiness is wanting what you have”. It is sort of a pop culture rendition of the Second Noble Truth. Yeah, Buddha again, and I’m a non-practicing Methodist, for crying out loud. What can I say? Siddhartha was one enlightened guy. I like him!

To refresh your memory, the Second Noble Truth says that desire, craving, wanting is the root of all suffering. In other words, pining after what you don’t have and you cannot get makes you miserable. Accepting the situation and being grateful for what you have left lightens the load.

This is not exactly easy. Looking on the dark side has survival value. Therefore we are pretty much pre-programmed to keying into and lock-on to the negatives in life. After all, your ancestors needed to see the wolves in the bushes, not the pretty flowers that were on those same bushes! Seeing the positive takes constant effort and a whole lot of – another DBT alert – turning the mind towards what you need to do to accept and feel better.

So kudos to Vickie and Bob. They seem to be actively working to accept, make the best of bad situations, and move forward. And encouragement to the rest of you. Accepting you are losing your sight will free you from hopelessness. It will free the energy you are using on worrying and fretting and allow you to use that energy to find ways to enrich your lives.

Remember accepting is not resignation and we who accept are NOT giving up. There will be an answer. We will find it.

January 13th, 2018

Next: Underwhelmed

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Suck It Up, Buttercup

I try not to throw pity parties for myself. I really do. Some of the time things might not be great but I get by without a lot of feeling sorry for myself.

However, sometimes other people send out the pity party invitations and I am very tempted to attend.

What am I talking about? I was finished with exercise class and waiting for transportation. Again. A friend asked if I needed a ride. “No. I’m good.” And I waited…and waited…and waited. The instructor finished whatever instructors do after class and started for her car. Why was I still there? Was I sure I had a ride? She looked at me with such concern I wanted to cry.

I finally got home – five miles – an hour after class had ended. I got to eat at 8:30. God, this is a pain!!!!!!!!!

Since it is generally good to work through these things before they grow legs and run away with you, I decided to write a page. Self help, ya know?

I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??

I found a Psychology Today article from 2013. Russell Grieger, the author, seems to blend a bit of DBT (alright, so I see DBT in just about everything) with a bit of “suck it up, Buttercup!”   Grieger quotes George Bernard Shaw as saying “People always blame their circumstances for what they are. I don’t believe in circumstances. The people who get on in the world are the people who get up and look for the circumstances they want and if they can’t find them, they make them”.  Grieger divide people into two groups. To shorten what he said, these groups are the whiners and the responsible ones.

I don’t believe there are two groups. I feel there are two approaches and most people flip back and forth. Sometimes you have to utter a few “Really!?!? Are you KIDDING me?!?!”s before you can get back in the game.

Geiger does make some suggestions for not getting stuck in the whiners’ camp. Some of them are rather familiar. Pain is the human condition. What makes you think you are so special?  No, life is not fair. Shit happens and it happens to the nicest people. The corollary to that is “the bad guy does not always die at the end of the movie. Sometimes he gets the girl and rides off into the sunset.”

Then the much nicer ones. You are stronger than you think. You can chose not to let this dictate your life.

Geiger did not add these but I am going to. The reason I ride the #¢≠π~£! van is it is a means to a positive end for me. Without it I could not be out in the community doing my thing. I can suffer a bit if it gets me what I want. The second thought I had was “no mud, no lotus”. I like to think the adversity will make the a better person. Good things can come from adversity if it is faced with the proper attitude.

So there that is. Pep talk done. I guess I can “suck it up, Buttercup!” one more time. Shaw would be pleased.

written December 21, 2017 Continue reading “Suck It Up, Buttercup”

Broken China

Hello, there! I woke up at 3:30 last night with rotator cuff tendonitis pain. While the over the counter nighttime pain reliever got rid of the pain, it may have worked a little too well. I woke up at 9:30 to the remnants of a puppy party!

Crawling on the floor picking up pieces of whatever they had chewed, I discovered the knobs on the drawer in my father’s gun cabinet had been pretty thoroughly gnawed.

If I were fully sighted, would I have noticed it before this? Not sure, but my guess would be yes.

Putting away dishes a little later, I had several, small bowls leap out of the cupboard and hit the counter with a resounding crash. Thoroughly scared Maggie. Although she is the rowdy pup she is also the more sensitive one.

Of course I did not have shoes on again. Dealing with shards of white bowls on a light-colored floor, I had to call my husband for help. Why can’t any of my ‘disasters’ happen with good contrast!?!

If you have not been following along I want to mention this is the second time I have been standing in the middle of a mess of broken kitchenware. Sans shoes, of course. If Lin would be so kind, I believe we could get a link for you…here. There are some suggestions I stole from the experts. [Lin/Linda: Sue’s page is called Did You Drop Something?]

While I really cannot say any of the occurrences this morning incited a panic reaction in me – I actually thrive in chaos; tedium drives me insane – I suspect some of you might have had a meltdown. Vision loss plus insane, chew-happy pups plus broken china. OMG!

I remembered I was just given some 100% natural (and, yes, I know a good, stiff whiskey is 100% natural, too) ways of dealing with panic and anxiety. Thought I would share.

The sympathetic nervous system is the one that activates your fight or flight response. It is the one that causes your heart to beat faster and you to experience stress. Good when it is needed but not needed all of the time!

The system that brings you down again is called the parasympathetic nervous system. A big part of this system is the vagus nerve.

They are finding stimulating the vagus nerve helps with panic and anxiety. The most popular technique, as you may know, is breathing from your diaphragm. There are, however, a number more strategies you may wish to try.

In 2014 Newsmax published a list of simple tricks to reduce stress through stimulating your vagus nerve. Immersing your face in cold water is helpful. Another technique is to suck on something that will immerse your tongue in saliva.

According to a 2017 article in Optimal Living Dynamics, singing, humming and chanting are helpful in stimulating your vagus nerve. This article also suggests some of my favorite things: socializing and laughing, exercise and yoga.

Controlling your reactions to sight loss and its problems is almost as important as caring for your eye health itself. Next time you find yourself stressing, give some thought to your vagus nerve.

And repeat after me: Ommmmmmm…….

written Dec. 12th, 2017 Continue reading “Broken China”

Sue’s Best Pages – Part 2

continued from page 1

Part 2 Dealing with the Emotional Reaction to Vision Loss

  • “AMD can lead you to question whether or not you have any value. It may lead you to feel unworthy and guilty about being dependent upon others for so much. These are symptoms of depression, too.”
  • “No sense getting peeved and denying it. It is what it is and I feel the way I feel. That is the way it is. Acceptance of what is important.”
  • “If you don’t feel very accomplished or brave? Fake it! There are people watching. Be the person they will emulate during tough times in their lives. Show them what grace under fire really looks like.”
  • “Remember this journey is not a sprint, it is a marathon. In fact, it is a marathon that we don’t even know the course.”
  • “Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.”

Next: The Highest Rated Pages

 

Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

Come Dance with Me – Again

End of a busy Saturday. The big news of the day is we met our puppy! She is all picked out and will be ready to come home to her new mommy and daddy on November 18th.

I also got back to my exercise classes. My routine will only be in place for about a week before I go running off on vacation but that is alright. Things will settle down soon after. I hope. No more ride snafus, food poisoning or adventures for a bit.

While I like a little adventure (but not ride snafus or illness!), sameness and predictable are really good. I like the familiar, too.

Such as the Eastern screech owl ‘whinnying’ outside the window. He has been there most nights for several weeks now. According to web sources, that is a territorial defense cry. Wonder what he is defending against? Apparently there is a hidden drama unfolding in the backyard!

One of the other things I got done today was going through some Healio and Medscape posts for articles. They are still publishing that Manchester, U.K. research saying eye shots cause anxiety and depression and my reaction is still “Duh! Ya think so?”

But the next things I came upon were actually related to that article – about depression and mental functioning – and gave me more reason to harp on exercise again.

I absolutely love it when things I enjoy doing are found to be good for not only physical health but cognitive and emotional health, too! It makes me feel so righteous to say I am doing it because it is recommended even though inside I know I would do it anyway. Like being told eating an entire chocolate cake with a half gallon of vanilla ice cream is a nutritious meal! Recommended at least three times a week!

Oh well, that might be a little extreme (a girl can dream; can’t she?). However, the Medscape article ‘Dancing Keeps Older Brains on the Ball’ gave me a rationale for being the ‘grand old lady’ at hip hop class as well as one of the ‘dowagers’ at Zumba.  The article talked about how the integration of info from multiple sensory sources such as hearing the music, watching the instructor and feeling how your own body is moving in space is good exercise for your brain. The researchers discovered the demands of learning new dances every week or so in addition to the balance demands of dancing literally beef up your hippocampus. The hippocampus (seahorse in Latin as I mentioned before) is your memory center and tends to shrink in old age. The researchers ended by saying “our study results suggest that social enrichment and a combination of physical and cognitive activities influences neuroprotection best”. So there!

And of course I got so excited about having a SCIENTIFIC rationale for putting on my boogie shoes a couple of times a week, I did not leave myself space to write about the other two articles I found. But good news: one of the articles on exercise and depression talks about the levels of exercise effective for battling depression and guess what? It was practically nuthin’. See? You can read the next page even if I am being a noodge!

October 22nd, 2017

Continue reading “Come Dance with Me – Again”

Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

Just Relax

Hello! Woke up this morning to find my husband online shopping! This is a great move forward considering how technophobic he used to be. I may not be 100% crazy about his purchases (do we really need that?) but it is a bit comforting to know he will know how to get online, shop, pay, etc. if/when my eyes get too bad.

My husband found an ad for Labrador Retriever pups so I called. The litter they have now will be ready right before we leave for vacation but a second litter they knew of will be ready right after we get back.  Cautiously hopeful. We will go and look at the set-up, parents, pups next week.

And yes, I know, I should get a shelter dog, etc. I am guilty but …..puppy!

I am about halfway through my crazy list of activities for October. Sort of loaded heavy in the beginning of the month. Gives me time to load the back end. I did NOT say that! Did I?

Anyway, so glad to hear our guest authors are also busy people. Riding horses and volunteering for all sorts of community projects. You go, girls!

Any of you guys want to volunteer for a page? I think Lin said at least 25 or 30% of the Facebook members are guys. How about a male perspective ? I also was told some of you are eye care professionals. How about the view from the other side of the machine?

We never did fly yesterday. Point of information: balloon pilots (captains?) will not launch if the winds are more than 8 miles an hour. Nate is making its way up the coast and we got some of that. Maybe. Anyway, it was windy.

My friend who took me (you ever feel like baggage when you say that?) is my fitness freak friend (alliteration!) and was driving both herself and me insane when we had to wait two hours to see if we could fly. I sent her to run – literally! – twice. She did about four miles.

My friend does not know how to relax. It is an art many people do not know. I can do it for short periods. For those two hours I lay on my back, watched the clouds and listened to the entertainment. I am not looking forward to two days of downtime when we are literally at sea on the upcoming cruise. Last time that happened I did a lot of pacing.

So how to relax when you cannot run it off or pace the deck? I found a Psychology Today article from 2013. The author, Will Meek, had distilled the relaxation process down to five steps. His process involved ways to change your physiology to change your emotions. Dr. Meek, Will, suggested orienting yourself to your environment. You do this by taking in sense impressions to recognize where you are. Then you ground yourself by noticing how you are connected to your environment. Right now I am noticing my butt on the couch, my laptop on my knee and the dishwasher humming in the next room. Next Will suggests an inner focus on your breath and heart rate. Deep breathing. While still breathing deeply give yourself a pep talk. Tell yourself you are strong. Tell yourself you have supports. Tell yourself Jesus or Allah or whatever deity you believe in has ‘got’ this problem in hand and will help. Tell yourself what you need to tell yourself to feel more in control. The last step is emerging. Focus on bringing yourself back to your problem with a relaxed attitude.

Now this page is about 100 words too long already so I am signing off here. May be back later. Never did get that article critiqued. Bye!

written October 8th, 2017

Continue reading “Just Relax”

Looking for Answers

Lin gave me a preview of the page Nancy submitted as a guest writer. I am so glad Nancy took our invitation! Hoping that more of you do the same. [click here for Nancy’s page.]

Now, we all know I am a little ‘different’. Might as well embrace it. My immediate supervisor at school loves to tell me “You are such a psychologist!” She’s telling me I’m weird; right?

Anyway, even though I am not normal, I see parallels between Nancy’s experiences, my experiences and maybe even your experiences, too.

We are all “of a certain age”. At 64, I think of myself as a youngster with AMD but Lin tells me new Facebook members keep getting younger. What the hey is happening there?!?!? Anyway, this is not a disease of the young.

Most of us had parents or relatives with AMD. Nancy worried about developing it herself. I never did but Daddy was into his 80s when he lost his sight and his condition was never named for me. Since relatives were pretty few and far between on my father’s side, he was a sample of one for me. I never gave a thought to it being hereditary. Oops. Maybe you were not so obtuse and worried like Nancy.

Both Nancy and I have had the anxiety of waiting for things to go to hell in a proverbial handbag. One of the problems with a slowly developing condition is it lulls you into complacency and the next thing you know WHAM! No longer so complacent.

Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.

Then there are the attempts to combat this stuff. I went research and science. Fits me. Nancy went nutrition. Me? Not so much. Even though my ‘little’ nephew – 6’5” and possibly still growing – assures me food is the most important drug you can put in your body, I am not going there.

And in keeping with the season I just had a really excellent piece of pumpkin spice cake. What? Don’t give me grief; it was orange! Antioxidant color; right?

Back on track – but it was yummy cake! – we are all looking for answers. We are all hoping for the miracle cure. Is it coming? I truly believe so. Just don’t expect it by next Tuesday. In the age of great medical breakthroughs, you would think our little problem would be easy but it’s not. It is a frustration we all feel.

Then…the elephant in the room: depression. We have talked about it before and will talk about it again. We have all felt it. Some of us have the resources to help us bounce back. Some of us need help finding those resources. Lin said something about citing pages, etc. about depression so I am sure several of these words will be blue soon. [click here for an article about depression in people with AMD.]

What I learned from Nancy’s page? We are all having similar experiences. Nancy, probably you, me, too. So maybe I’m not so weird after all? Maybe?

written October 2nd, 2017 Continue reading “Looking for Answers”

Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

Continue reading “Practice What I Preach”

Taking the World by Storm

One of my yoga buddies has a child who was born with a malformation of the optic nerve. Since she is still so young, no one is totally sure what she sees.

What this child lacks in sight she makes up for in attitude. She is a pistol! Drives her mother crazy.  Sadist that I am, I find it amusing.

I told her mother not to worry too much about it. She may be (what am I saying may be for? She is!) a challenge now but she will need every bit of that determination as she grows up visually impaired in a sighted world.

This brashness, this chutzpah if you will, I see as ego strength. Ego strength is that which allows us to deal with the demands of the world. Ego strength is the ability to maintain a sense of personal identity and sense of self in the midst of all of the nonsense. According to verywell.com those with good ego strength are confident in their abilities and are good at coming up with solutions. They approach problems with the belief they can and will overcome. Challenges are to be mastered. Good ego strength goes along with optimism. Resilience is part of the package as well.

I looked online for info on ego strength and vision loss. Did not find that much. My guess is each one of us came to where we are now with our own, individual level of ego strength, our own perceptions of how we handle problems and of our resources to cope. Some of us functioned pretty much as we expected we would. Some did better. Some did worse.

If we did worse than we expected we would, ego strength may have taken a downturn. Confidence may be low and – unlike our young friend! – we may be wracked with doubt. Self-doubt is paralyzing. It is generally best to ignore it. Low ego strength can also cause emotional reactivity and pessimism. We may put our sense of self-worth in the hands of others.

Ernest Hemingway said “We are all broken. That’s how the light gets in”.  Our impairment may be sight loss but just about everyone else has a problem, too. The idea is to use our problems are impetuses to growth. To display ego strength…even if we fake some of it!

Chabad.org has a nice list of things to remember when you are trying to bolster your ego strength. Their article says you have value and only you can say how you are doing with the challenges you have been given. Don’t let others judge you and don’t use others as a measure of how you are doing. Also, everyone can contribute something to make the world a better place. Be aware of and value your contributions, big or small. Practice gratitude. Accept yourself just as you are.

So that’s that. Thoughts inspired by a strong-willed preschooler with a visual impairment. Taking the world by storm. Personally, I don’t think the world has much of a chance!

written September 15th, 2017

Continue reading “Taking the World by Storm”

Get Busy Living

Closing the pool has been an adventure every year.  Today I discovered the diameter of the drain on the new sand filter was much larger than the old one. The standard hose I usually put on it was not going to cut it. Off to our local do-it-yourself store!

Once I got there and got someone to help me, I realized this was not going to be an easy fix. We were going to have to rig it. I had presented the store guy with a ‘problem’.

Problems energize people. Before we had put together a ‘fix’ we thought would actually work my little problem had engaged three of the store guys for over 15 minutes. They were scurrying back and forth, consulting on all sorts of possible solutions.

If the problem-solving process had gone on any longer, I bet I could have netted two or three more helpers. They acted like it was the most fun they had had all day!

Got me thinking. Got me thinking about part of the reason I am not interested in retiring. I thrive on the challenge.

Many people say they long for the easy life. I sometimes wonder what they would do if they got their wish …day after day after day. Shudder!

The blog Get Busy Living agrees with me. The author points out we all started out attacking challenges.  However, he (she?) says as we have gotten older we have lost our sense of fearlessness. We have abandoned the struggle in favor of lives that are ‘safe’ and ‘secure’. No problem. No risks. No fun.

In patheos.com’s blog entitled The Value of Challenge they talk about the sense of satisfaction and purpose we get when we tackle challenges. Challenges bring richness to our world. Much better than spending all day telling people plumbing supplies are in aisle 40. Ask the guys at the do-it-yourself yourself store!

How can we maintain challenge and accomplishment in our lives now that we are older and have a vision loss?  Looking at the more professional literature I discovered Hans-Werner Wahl in Heidelberg wrote about the psychological challenges of late-life visual impairment. Wahl quoted research on secondary control strategies, disengaging from no longer attainable goals, and accommodative mode. Accommodative mode is finding something that can be done rather than giving up.

I won’t be able to work in the school forever, but maybe I can do more counseling at the office. I cannot drive myself anymore but I am planning on doing more bus trips. Both examples of ‘accommodative mode’ will provide me with new experiences and challenges.

How can you disengage from old goals and substitute things you are capable of doing?  Listen to books on things you have never explored before? Learn how to use new technology for low vision? Cook foods from different ethnic groups? Read this blog? …I know; don’t be silly!?

I was always told that when God closes a door, He opens a window. And yes, sometimes it is an attic window three stories up. But just think of the stories you will have to tell after finding a way through that window!

Enjoy the challenge!

written September 4th, 2017 Continue reading “Get Busy Living”

No Brainer

I have not been able to get my act together all weekend. I have had low motivation and not a lot interests me. Depressed? Not exactly.

To ‘fess up’, I must admit what I have been doing all weekend is listening to an audiobook. I have been sort of ‘into’ Kellerman’s The Golem of Paris which I discovered is actually the second in a series. Now I have to listen to the first one!

My head has been full of the legend of the Golem of Prague and the Book of Enoch (weird, I know, but I kid you not. They are integral parts of the story line.) But what if my head were full of worries and hopelessness and dread?

I would not, by a long shot, be alone. PsychiatryAdvisor reports 57.2% of older people with vision impairment have depression. That is up from 43.5% of older people without vision loss. If those numbers are accurate, half of you folks are depressed. Crap. This is not good!

Some of this will be a recap, but I like to think it bears repeating. For example, I want to repeat gradual vision loss or loss in one eye but not the other is very anxiety producing! Where do you think the saying “waiting for the other shoe to drop” came from? Waiting for something bad to happen ain’t good.

Then there is the interaction between loss of everyday competence from vision loss combined with the loss of everyday competence from age-related cognitive decline. There is a one, two punch! Facing loss of independence from that combo is depressing.

This combo leads me right back to what I have preached and preached and preached some more. Exercise helps to keep you sharp. Learning and using low vision strategies and technology helps to keep you competent. Sharp, competent people keep their independence. Independent people are less likely to become depressed. End of lecture once again.

The second installment of the article starts with what I consider to be a ‘no brainer’. To wit, if you can save your vision, you can help save your mental health. Like I said, no brainer. Go for your shots. Investigate changes in your vision immediately. Hard to get more basic than this.

Next the article talked about using your low vision skills and technology and a little thing called behavioral activation. What behavioral activation basically is is getting back into life. Too bad transportation is a pain in your sweet, little tushie. If it gets you to your activities – even an hour and a half early – use it. Swallow your pride and ask for a ride. Remember Cabaret? “What good is sitting alone in your room?” Good for depression! Instead,”go taste the wine! Go hear the band!” I bet Liza Minnelli never realized she was a behavioral activation therapist?.

There are several paragraphs on what psychotropic medications NOT to use when you are depressed. I think those deserve more research and their own page. For here, just remember, question your doctor about the vision side effects of EVERY medication you are prescribed. You are your own best advocate.

OK, I have nagged you enough for one page. What did mother say? “I only do it for your own good.” Me, I’m going back to my book. Did you ever hear of the Golem of Prague?

written August 27th, 2017 Continue reading “No Brainer”

One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

Continue reading “One Foot in Front of the Other”

“I Don’t Want to Go There!”

Lin showed me one of the conversation threads from the Facebook group. She thought we might do a page or two on the topic. The topic was the reactions of partners to our vision loss.

After looking for some time last evening and today, I have accumulated a few bits and pieces on the subject. Some of the information is 20 years old. A lot of it is anecdotal (ie, based on personal accounts). In general, however, there is not much.

If we as the visually impaired population are being treated like mushrooms – you remember, being kept in the dark and fed bullshit – it appears the treatment of partners of the visually impaired is even worse. They are pretty much ignored!

I did find one anecdotal piece that may be food for thought. Sam Dylan Finch wrote about his partner who has an ‘invisible disability’. I am going to take some of his comments and expound – liberally – upon them.

Finch talks about time going on and the feeling nothing has really changed. Sort of “this is what it must be like in Limbo”. There are more old chestnuts to describe this state of affairs. Waiting for the other shoe to drop. Poop or get off the pot. Most of them just have the feeling of uneasy anticipation. “Get on with it already!”

I imagine sometimes our partners want to scream “Just go blind already! Stop talking and get it over with!” The anticipation of impending doom can be overwhelming.

Not having an answer to this disease is – bluntly put – a pain in the ass. I suspect we are all intelligent people with many successes under our belts. Ditto for our partners. There are few things we have not finagled our ways out of. Why is there no way out of this? And aren’t our partners supposed to help us? Yet every time they come up with a ‘new’ idea, we have already seen it. And to top that off, it is still in stage 2 clinical trials and Lin and Sue said the results were questionable! At best they might feel redundant. At worse? Helpless.

A thought I just had is this: how excluded might our partners feel? Suddenly we have become the ‘other’. We have entered a secret society that the only way they can enter is to lose their own sight. Not going there!

But just the same, we seem to suddenly have all these online acquaintances who understand us in a way our partners do not. We share a reality our partners cannot enter.

Finch talked about the guilt associated with resentment. Partners take on more responsibility. That is more on top of what they already have. Some people look down the road and imagine servitude, constantly at the beck and call of a ‘blind’ partner. Those folks don’t want to talk about the disease. Ignore it and it might go away. Keep me from becoming chauffeur, housekeeper and nurse. I don’t want to go there! And if we cannot stay away from that fate, don’t make me feel guilty about fearing it.

So that is my elaboration of Sam Dylan Finch’s points about having a disabled partner. How does it sound? Any thoughts? Continue reading ““I Don’t Want to Go There!””

Mi Depression, Su Depression

We all know adjusting to sight loss is stressful. We are well aware of the times it has freaked us out but how aware are we of the impact our loss has on those around us? How often does anyone notice the stress on family members ?

Back in 2009 – that is 8 years ago, guys. Long enough this report could be in the third grade! – there was published an article entitled Family Function and Low Vision: A Systematic Review. The authors lamented they had not had many appropriate articles to review and – guess what – I found pretty much next to nothing since then. Families of the visually impaired are being ignored!

But yet families are a huge support to those who are losing their sight. Adequate support – both practical and emotional – protects against distress and other negative health concerns. The way we stay functional and sane is by having people there for us.

The problem is sometimes family members go through all of the stages of adjustment we do. Shock, denial and mourning are not just for us. But since we are the identified clients, we (hopefully) get the services and the attention. They don’t.

Visual impairment is related to separation and divorce. (Or at least it was in 1993. THAT study is old enough to vote.) There have also been more recent studies on emotion contagion.

Yep, mi depression, su depression*. And if that is not bad enough, the spouses of the visually impaired even have worse physical well-being than controls. Jeez.

The suggestions from the authors were pretty basic: education and mental health counseling. Family members need to know about visual impairment so they know how and how much to help. Overprotection can be nearly as damaging as neglect. Mental health support is pretty self-explanatory. Find and investigate the negative belief systems and see what you can do to refute them. Provide emotional support.

In short, the fight can be as hard on the guy who holds your coat as it is on you. Family members need to know about your vision loss and be told the level of support you need. They need to have time to do things for themselves and they need someone to support them as well. None of this is easy on anybody but it is easier when we do it together.

*translation of title is “My Depression, Your Depression” as in the phrase “Mi Casa, Su Casa” which literally translated means “My House, Your House”.

Continue reading “Mi Depression, Su Depression”

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