macular degeneration, macular, diagnosis Cognitive Therapy – My Macular Degeneration Journey/Journal

My Diabolical Plan – Revisited March 2023 – by Sue LaBar Yohey

Some of you may know I can be persistent -very ! -and even manipulative. I get a plan in my head and make the moves to follow it through.

Ever since I was diagnosed as legally blind with geographic atrophy, advanced age-related macular degeneration, in February 2016, I have had a master plan, a DIABOLICAL plan, for recovering my eye sight sometime before I die [Linda here: curious how old she is? At the time of this article, she is 69. She’s determined to live a LONG time. ::smile::]. This plan started with presenting myself as a patient to the esteemed retinologist Dr. Carl Regillo  from Wills Eye Hospital in Philadelphia. I then expressed interest in being in a study. I wanted a clinical trial hopefully involving stem cells.

After what seemed like dozens of trips to Bethlehem, Pennsylvania, my persistence paid off. I was offered a place in phase 3 of a study using a complement factor inhibiter that had been considered to have promise. While initially it seemed as if being offered this study was one step to the left of where I wanted to be, I decided to take it. It was my “in” and I was not guaranteed another opportunity.

As it turned out, I had the honor of being part of the trials that brought forth the first, FDA-approved treatment for geographic atrophy. This is Syfovre from Apellis.

How do I feel about this? While my contribution was small, it is still kind of cool to have been involved in the making of medical history. I feel like the water boy for the Super Bowl or maybe like the ball boy/girl at Wimbledon. Helping to make it happen gives me pride.

So here I am, two steps in the Diabolical Plan successfully behind me. I manipulated getting to see Regillo, I wanted him as a doctor and took steps to make that happen. Regillo almost guaranteed I would be in a study. Funny, although I had no way to determine the outcome of the study, I never doubted the treatment would be approved. Forgive my arrogance, but without its approval, my plan could not progress, and, as far as I am concerned, it IS happening. If my plan was going to work, the treatment had to work first. I never doubted.

Right now, I am half way through a 3-year study in which they are searching for side effects. For me, this study is a place holder in three ways. First of all, it keeps me in front of the doctors running the show. While I cannot go into just any old study, I could go into another study involving Syfovre. When one of those comes along, I will be bouncing up and down on the sidelines. “Put me in, coach. I want to play!”

The other reasons this study is a place holder are these: medical science is not there yet.
Also, Syfovre is not the best we can do.

Second one first: while the Benz Motorwagen was a great innovation in 1886, it was also not at the front of the pack for long. And yes, that really was the first car. I looked it up.) Just like the Benz Motorwagen was replaced by more efficient cars, there will be other, better treatments for GA. My believe is the ultimate “treatment” will be “replacement parts”. Enter stem cells.

They have now learned how to “reverse engineer” blood and skin cells to become induced pluripotent stem cells. Once you have these, they can be “coaxed” and “massaged” into becoming retinal pigment epithelial cells. Remember RPEs are the “servant cells” that keep the photoreceptors alive. Without RPEs there are no photoreceptors and no sight.

According to a panel member on the March 2nd, 2023, webinar ‘Towards a Stem Cell Cure for Blindness,’ lab-grown RPE cells might be available to the general public in about six years. They are moving fast but they are still in phase 1 trials. In other words medical science is not ready for me yet.

Moving on with my thinking, Syfovre will be a way for me, and perhaps millions of others, to buy time. Syfovre slows the deterioration. Current wisdom is that stem cell therapy and RPE replacement stops deterioration. If Apellis wants to sell their drug, they have to prove it will not keep people from eventually benefitting from the superior treatment. Voila! There is my – yet imaginary – next step in my Diabolical Plan. Put me in, coach!

And just a reminder, replacing RPEs will not restore vision. As I have said before, dead is dead and a number of my photoreceptors are dead. However, replacement RPEs will stop my vision from getting worse. They may also improve it slightly, not much, by resuscitating photoreceptors on their last legs.

What about photoreceptor replacement? After all, I do need those replaced to restore my vision. That technology is much further down the road but still getting closer every day. It will get here in time. After all, I have a Diabolic Plan to complete!

Who is Sue and Why Should You Get to Know Her?

The Facebook Group

First, it weren’t for Sue, the Facebook group wouldn’t exist! We’ve been close friends since college which is now a LONG time ago. In June 2015 she was driving, got something in one eye and closed it, and the car in front of her disappeared! You can read about that and how her journey with AMD began here: In the Beginning. In February 2016 when she was told that she was legally blind, she asked me to create a site for her so that she could process what was going on and to hopefully help others. In May 2016 after months of not being able to easily have conversations with followers, I started the Facebook group. The rest, as they say, is history.

Her Journey

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue created a ‘normal for her’ life. What is it like? It’s like her life ‘before’ except she does not drive. What she does is travel domestically (sometimes even by herself) and aboard, works as a psychologist, walks her 2 active Labrador Retrievers, attends multiple exercise classes every week, rides her bike safely, takes photographs (some of which have won awards locally), skis in the Winter and rafts in the Summer, goes to social events with her friends and co-workers. She’s also taught courses in the psychological therapy called DBT (Dialectical Behavioral Therapy) that she uses with her clients and used herself in the beginning of her journey.

What she does NOT do is let her geographic atrophy stop her from doing what she wants to do. As she said herself she is persistent and determined.

For quite a few years, she wrote for this site, but it’s now more an archive. She writes for Health Union’s maculardegeneration.net site where you can read her more recent articles. As she wrote, she was in the phase 3 Apellis Pharmaceuticals clinical trial for what was called APL-2 then, was invited to be in the long-term follow-up study where it was called pegcetacoplan which is called Syfovre since it’s approval by the FDA on February 17th. 2023.

When asked what her visual acuity is, she says it’s 20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other. Yes, she has a blind spot in the middle of each eye but has taught herself how to use her ‘sweet spot’ also called a Preferred Retinal Location.

 

 

 

 

Cope Ahead Redux

Lin asked me to do an outline on the cope ahead skill from DBT. I am not an outline sort of person. I prefer to free flow, stream of consciousness sort of thing. So, here goes, by request…sort of. [Sue’s written about cope ahead before. I wanted her to review it again and give us an example of its use.]

Dialectic Behavior Therapy (DBT) is a skills-based approach. That means DBT therapists directly teach skills of living. One of these skills is how to cope ahead to effectively get through a situation. [Lin/Linda: to read more about DBT, read Sue’s page Teacher, Teach Thyself.]

Effectiveness is doing what works to get to your goal. It assumes you know what your goal is. Most people have an idea of what their goals might be but they describe them in the negative. “I won’t mess up” for example.

Now those of us who have ever had anything to do with small children can tell us all something about the use of negatives. You tell a kid not to do something and that is the first thing he does. Hate to break it to you, but you do the same thing. Tell yourself not to do something and that is exactly what you do, too.

People don’t end up with an eye on the prize. They end up with an eye on the booby prize and that is exactly what they get!

Ergo, first rule: be positive! Your goal is to succeed. It is not to avoid failure. The scenario you want to construct for cope ahead is positive, positive, positive.

The second rule is include details. You want to make it as true to life as possible. Your imagination can construct very vivid images. Let it go. The more vivid and lifelike you make your cope ahead image, the more real it will seem.

Last but not least is practice. Imagine yourself just breezing through the situation. Look at me! I am doing everything right! Imagine yourself being collected, skillful and brilliant. Imagine doing everything right until it becomes second nature.

Then take it into the real world and try it out.

Ta da! There you have it, ladies and gentlemen, I give you the cope ahead skill.

Lin/Linda here: I also asked Sue to help me come up with an example of a cope ahead visualization. One of the experiences that causes some people anxiety is that of going for an anti-VEGF injection for wet AMD. Try this:

Think of driving to the office on a beautiful day noticing everything around you.

Enjoying the day.

Going in to the waiting room and sitting calmly, distracting yourself with beautiful photos or a funny story in a magazine.

Think about getting up easily and walking into the examination room.

See yourself joking with a technician and then sitting comfortably.

Feel the numbing drops and know that they’re working.

Greet the doctor with a smile and look in the direction that he told you.

Breath calmly.

Feel the pressure of the shot.

Think of having the doctor tell you how well you have done and see him smile.

Sit there calmly while the technician checks you out. Get up, walk out the door . Wave at everyone.


Feel free to embellish this basic outline with as many, very positive details as possible. The idea is to really feel as if you are skillfully practicing it for real. If there is a glitch, don’t be tempted to give up or start imagining horrible things. Calm yourself and start again.

PS Those of you who had Intro to Psych  may  recognize something else in the visualization exercise of cope ahead. Did you see it? It’s desensitization! Three bonus points on your quiz if you got it right!  Desensitization is exposing yourself to the feared stimulus without the feared consequences. The connection between the stimulus and the fear is lessened.  And you thought you would never use any of that stuff in the real world!

Written August 17th, 2019

Next: WHAT IS VISUAL ACUITY?

It’s Contagious!

Emotions call to their brethren in others. If someone addresses us in anger, we get angry. If we go where people are laughing, we laugh as well. This is called emotional contagion. It is quite common and some people believe it may be at the root of such positive things as social cohesion and empathy.

However, sometimes, when the emotions are negative, it is not such a good thing. Therapists will suggest couples each take a time out when the discussion threatens to become a heated argument, for example. Escalating anger, with each partner’s emotion feeding on the emotion of the other, can be a dangerous thing.

Then there is mass hysteria. Mass hysteria is the transmission of the perception of threat through a population. It is usually spread by rumor but may also be spread in other ways, such as suggestion or example. Wikipedia speaks of the “dancing plague” of 1518. While this sounds to me like a really fun “plague” to have if you absolutely must have one – light years better than the Black Death, for instance – I am not sure I would want to boogie my way into the Afterworld as some folks did.

Closer to our own time, have you heard about the mass hysteria associated with Orson Wells’ radio presentation of War of the Worlds? While many people question the veracity of claims of suicides etc, the power of radio and other forms of mass media to spread the perception of threat is seldom questioned.

Where am I going with this? Here. Specifically, we are both blessed and cursed to have social media. We are able to share many things with friends new and old. We are able to support and comfort one another but with that same social media we are also able to scare each other nearly to death.

Each of us is different. Not everyone has the same background and not everyone will have the same future. Two courses of the same condition are rarely alike. Two people will often respond to the same treatment very differently. However, when we hear someone else’s story we somehow fear her story will be ours. Emotions take over and we despair.

The way we can keep from falling into the trap of assuming the fate of others will be ours and sinking deeper into despair is to step back and look at the facts. Using rational mind to counter emotional mind in order to get to the calm accepting state that is wise mind actually does work. [Lin/Linda: Rational mind, emotional mind and wise mind are from Sue’s page Three States of Mind. Check it out!]

In the case of the War of the Worlds broadcast, there were a number of ways to check the facts. The “news” of the “invasion” was only on one radio station. There was a disclaimer at the start of the show and the show was only an hour long. Change the station, ask a neighbor, wait before you panic…several different options for avoiding mass hysteria here.

How about in the world of AMD and social media?

Let’s take the conversion issue for example. Conversion from dry to wet AMD is scary but hardly inevitable. FACT: based on info from the Age-Related Macular Degeneration Foundation, approximately 10% of those with dry AMD convert to wet. That means we who have dry AMD have a 90% chance of staying dry and never converting. Why bet you will convert if those are the odds? Smart money is on assuming we stay dry.

How about “horrible” eye shots? When I felt nothing with the shots I may or may not be getting, Lin did a quick survey and got around 50 people who said they never had an issue. That was 50 people who read it, were available and answered within a couple of hours.

Bad results are not inevitable but it is the bad results people will tell you about.

Each of us is unique. We cannot assume from one person’s story that her fate will be our fate. If you are worried about something, step back, breathe and check the facts. Much of the time what we fear simply is not going to happen.

Where to get the facts? Ask us! If we don’t know, Lin and I will find out for you.

Oh, and if you want a good distraction, Orson Wells’ War of the Worlds radio broadcast is on You Tube. 57 minutes long. Enjoy.

Written August 10th, 2019

Next: CONTROL FREAKS OF THE WORLD UNITE!

Wanna See My Boo Boo?

Wanna see my boo boo? I fell on my bike yesterday. I have a lovely bruise on my right ankle where the bike hit me. However, it appears my ankle was tougher than my bike. I can still walk but my gears are slipping. Nuts! That means no more biking until there is a repair.

My guess is there are some people saying how I should not bike any more. After all, I am 66 and legally blind. Time to hang it up.

Nope. It was only partially my fault.  When I saw they had had the road torn up and the patch job was questionable, I should have gone another way.

Bad decision, not bad vision.

Did I know I was going to fall? Of course not, but life is full of mishaps. We truly don’t have a crystal ball telling us what is going to happen to us.

Bringing me to the topic of a request Lin had. A member/reader wanted to know how I deal with the uncertainty of a progressive condition like age-related macular degeneration. Good question.

Probably the short answer to that question is this : I don’t think about it! Now that does not mean I tell myself not to think about it. Not at all. If you are at a party and are moving about the room trying to avoid a person you simply CANNOT stand, what are you thinking about? The person you cannot stand, of course! Did you want to ruin a perfectly good event thinking about that witch? Doubt it!

Better to put your mind elsewhere. These are yummy canapés! John tells such funny stories!  Concentrate on what gives you pleasure, not what you don’t want to think about.

And when your attention wanders back, pick it up and move it and keep picking it up and moving it until the fun, interesting stuff is just where it naturally goes.

What is fun and interesting for you? We usually feel best and the most “like” ourselves when we follow our values. It is called being authentic. Little steps towards your goals and values will allow you to eventually manifest those goals and values. That is called purpose or having meaning in life. Remember Viktor Frankl said if you have a why, you can endure any how.

I did a page a long time ago about how having one eye yet “to go” has been found to cause more anxiety than having two, bad eyes. I have the “advantage” of having my second eye go bad practically overnight. Two, bad eyes are supposed to cause less anxiety; right? Lucky me; not.

Anyway, I guess I have the advantage – and I use that word loosely – of experiencing a sharp loss in vision and surviving. And I know I could do it again. At least in my mind, I was tried and not found wanting.

How many different ways have you been tried and not found wanting?  Why would you think you would fail this test?  We are a tough lot; we are. Vietnam vets, civil rights protesters, remember us?  Whose music and fashions (minus the Nehru jacket; that is) keep coming back as “cool”? Ours. We had it going on before we knew what having it going on meant and there is no reason to think we are going to fall behind now.

So to wrap up: Boo boos happen. We cannot predict them and fear of falling off a bike means you will never ride. How much better to be unmindful of when things will end? How much better to concentrate on the joys in life and not the vague  possibilities of disaster? Personally, I think it is all a heck of a lot better. Now I have to get that damn bike fixed!

Written August 5th, 2019

Next: IT’S CONTAGIOUS

“And Now For Something Entirely Different”

[Lin/Linda: The title is from the 1971 film of the same name by the Monty Python Flying Circus.]

Today is my “odds and ends” day. I don’t work Mondays. Part of the reason for that is so I can have time to dedicate to, well, odds and ends.

Today my husband suggested lunch out. I said Chinese. He said the buffet at the strip mall. Decision made.

In the same strip mall is a well-known, national discount clothing store …oh, ok, it is Marshalls. This Marshalls has been in the same location for at least four years. I realized today I had never been in that store.

No real reason why. Certainly nothing against Marshalls. Before my vision loss I was busy. Since my vision loss I have been dependent on others for my transportation. I do things on the drivers’ schedules. I plan my trips. I know where I am going and what I am doing. Side trips not allowed.

I have said this before but it bears repeating: adventures and spontaneity are not big parts of my existence any more. Not that they were before, of course. I plan. Bless us, but can I plan. However, having the added factors of not wanting to inconvenience others and/or not wanting to miss my ride, even these fifty yard little side trips do not occur any more.

Today I went to Marshalls. I bought five things. No, I do not by any stretch of the imagination need clothes but they were cute. They are also a little different from things I generally buy. Deciding to go into the store, I had decided I needed a little different in my life.

It appears a guy named Ben Fletcher has made a career – or at least part of a career – out of telling people to “do something different”. Posting for psychology today.com (2/15/14) Fletcher reported happy people DO things differently than sad people. Happy is as happy does.

Fletcher quotes Martin Seligman, the father of positive psychology as saying, in order to flourish emotionally we need PERMA. Those stand for Positive Emotion, Engagement, Relationship, Meaning and a sense of Accomplishment. Fletcher suggested we need GREAT DREAMS.

Now several of those are things we discuss in DBT. You know, acceptance, meaning, exercise. But I want to focus on the T, trying out. Fletcher defines that as trying new things.

Fletcher quoted the results of some of Seligman’s work from 2005. It appears happiness scores went up when people broke old habits and behaved differently. It did not have to be extremely differently. Just enough to shake things up.

I don’t know about you but I don’t get overly excited about going to work. However, I do get excited about a new psychoeducational program we plan to teach. I don’t get excited about an old song we dance to in hip hop, but I get excited about the “impossible” move he expects us to execute in his newest routine. Same with dog walks. I don’t get excited walking the girls to the top of the hill one more time but finding a new place to walk them makes me feel good.

So what can you do to avoid the old ssdd doldrums? You know, the ones you sunk even deeper into when you lost sight. What can you do different? What can you do to feel better?

Written February 11th, 2019

Next:

Next: FEELING GRATEFUL

In the Moment

When it rains it pours. There really can be too much of a good thing.

Right now I am pretty much awash in interesting possibilities. My yogini and I are planning a six-week program applying yoga and mindfulness to mental health issues. At the office we are in the beginning stages of negotiating with a county agency to provide psychological evaluations. Lin and I are exploring options that have been presented to us to share our AMD knowledge and writing skills beyond what we do currently . My husband and I head to Ireland in April. Whoa.

In other words I think about the future a lot. I sort of live in the future.

So what are I doing now? I am lying on the bed with a dog stretched over my stomach. I am writing this page and thinking about taking a nap. I am cold and tired after a busy morning and it is time for a break. Time to be in the now and let the future take care of itself.

For many of us, being in the now – being in the moment in DBT speak – is extremely difficult. I know many of you live in the future in a rather negative fashion. We get a lot of “what if” comments. What if I go blind and can’t do x, y or z? What if they take my license? The world is full of what ifs that have not happened yet and may never happen. Yet we allow these thoughts to destroy perfectly acceptable nows because we worry and fret.

I have preached mindfulness here and at the office and have been told it is “impossible! I can’t do that!” dozens of times. I beg to differ.

In yoga – yes, again – there is a thing called a Drishti. A Drishti is a focus point you can use for balance. If I am doing a balance pose I have learned to find a stable spot in front of me and stare at it. With my vision I often use the little red light on the sound system speaker. THAT I can see!

Of course, balance challenged as I am, my Drishti often becomes a drifty, but that is neither here nor there. Having a point of focus helps maintain balance.

As it is on the mat, so it is off the mat. Having a point of focus in life helps to maintain balance as well. This can happen at many levels.
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At the simplest level is something like focusing on petting the dog. Or the cat if you must. If you get a little drifty and start worrying and fretting, bring your attention back and try again. Focus on the soft, warm fur and just keep petting with attention, not automatically.

At a deeper level, think about everything you do, and do it with both intention and attention. Perform old tasks with the same focus you used when you were still learning. And be cognizant of your goals. What are you trying to do? Rinse the sink? Don’t just slosh some water around! Think of whether or not you are getting it clean. Focus. What is your purpose in this action?

So that is that…and yes, I know there is a difference between what I am planning for in the future and what you are worrying about. Planning versus worrying? By George, I believe I just set up a segue to my next page!

Catch you later!

Written January 19th, 2019

Next: Worry vs Planning

A Minor Epiphany

Not exactly on assignment right now. I want to run something past you…

Every once in a while, the stars align. The penny drops. Whatever metaphor you wish to use, I have a minor epiphany. OK, wait for it…(sound of penny dropping)!

It is the beginning of a new year. Everyone is making resolutions that will be promptly broken.

Actually, make that nearly everyone. I gave them up years ago. Resolutions are rather superficial phenomena. They generally get us nowhere…except, perhaps, for giving us guilt for not being able to stick to them. [Lin/Linda: I’ve given them up for the same reason!]

Also, since I have been teaching dialectic behavior therapy (DBT), I have come to realize resolutions are very judgmental. They wag their fingers at us and point out – repeatedly – how we need to improve. Is it any wonder most people want to part company with resolutions as soon as possible?

Add to the concept resolutions are judgmental, and ergo ineffective, two other things. One came again from DBT and the other came from yoga class. Yep, two of my favorite sources of things to ponder once again.

DBT has added values clarification to what we are to teach. Many of my clients have a lack of direction in their lives. Being able to define their values can give people direction. I have been pondering how I want to squeeze values clarification into an already crowded agenda. Values have been on my mind.

Add to that the “lesson” we had in yoga this morning. We were taught a little about sankalpa.

According to Catriona Pollard writing for MBG, sankalpa is intention. It can be as simple as one word, the affirmation of a value you want to include in your life. Having this intention and keeping it in your mind every day will help to manifest it into reality. Instead of putting yourself on a path of denial and pain, you are putting yourself on the path to growth.

Sankalpa allows for acceptance of faults. It allows for compassion for the self. It allows for slow progress.

Identify your value. Manifest it in one, simple act a day and you are on your way. Hey, it worked for the Cowardly Lion. What other testimonial do we need?!?

What value/virtue do you want to manifest in 2019? Do you need compassion for yourself when you fumble with something? Practice loving kindness with your mistakes. Do you want to be brave in the face of vision loss or frightening treatments? Tell yourself you are brave and then walk the walk as well as talk the talk. Manifest your values through a simple act everyday and you will find you possess that virtue. Not bad. Not bad at all.

So there is my epiphany for today. What do you think? Hopefully it will be one more way for you to find your way through the travails associated with vision loss. Personally, I like it a lot better than resolutions for giving up chocolate chip cookies and ice cream, but that’s me.

Catch you later!

Written December 31st, 2018

Next: I’M BORED – AGAIN

Lemons and Lemonade

Back as a psychologist this time…

We had a little “incident” Saturday morning. I found my glasses in the middle of the floor. This time the lenses were chewed. Big tooth marks on both lenses.

All I can say is it is a good thing the puppygirls are cute.

Now, I don’t know about you, but having unusable glasses is a minor disaster for me. I got extremely irritated and rather miserable. DBT to the rescue!

DBT teaches there are four responses to any problem. #1 is fix the problem. The on-call doctor at the hospital was zero – as in no, nada, nothing (can you tell she irritated me?) – help. A couple of other places no one was home. The person who did call me back was able to get me in and at least pronounce my current lenses officially “dead”. He was also able to order new lenses…to arrive around Wednesday the following week. Sigh. Not exactly the answer I was hoping for.

I am going to skip to #4 of the DBT possible solutions to a problem. That one is be miserable. Being miserable when problem-solving attempts fail is definitely an option. You are allowed to be miserable. However, when I am frustrated and allow myself to continue in that mode, I am not fit company for man nor beast. If I am going to continue to be effective in life, I need another option or two.

Back to option #2. That one is try to feel better. That is where emotional regulation comes in. I took care of physical needs by taking my medication and eating breakfast even though I wanted to be focused on the glasses crisis. I worked on therapy notes to build mastery and feel in control. When my husband made dinner, I expressed gratitude. All of these things changed my emotional state some for the better.

The #3 response to a problem is to learn to tolerate it. This is where we come to acceptance and distress tolerance skills. It is what it is. I gave it all my best shot and the realities of the situation were against me. Now I get to cope until the end of the week.

How to cope? Keeping busy always helps. What can I do to keep my mind occupied? Then there is comparisons. Could be worse. In the world of disasters, this is a small one. No one died or was maimed. It can be fixed. I can just will myself to put it away and not think about it. I can do for others.

Then there are what we DBT sorts call the IMPROVE skills. I could improve the moment through imagery. If I were in Aruba, what would I be doing right now? That is a nice image. I could do relaxation exercises. I could prayer. “Dear God, keep me from killing these little monsters!”

And the one I am using right now? Meaning. This situation has meaning because it is allowing me to share, both with you and with my student, the DBT, 4 possible reactions to any problem.

Might as well turn those lemons into lemonade, huh? Have a cookie! Staying miserable in lousy situations not required.

Written December 16th, 2018

Next: HAPPY NEW YEAR 2019

Sue on Assignment: Exhausted by Life?

Rather than hold you in suspense about the other five of the 6 Tips For What to Do When You Feel Exhausted by Life, I figured I would swing right into this. Also, I am launching several, other personal and professional projects this winter and spring and I need to keep up the pace! Speaking of being exhausted by life!

Anyway, #2 is “remind yourself you are doing the best you can”. This is related to the DBT tenet, clients are doing the best they can do, but they can do better. Huh? How many people do you know who choose to suffer if they have the skill and the resources to get out of it? Not many, I suppose. Find the resources and learn the skills and you just may have a way to lessen suffering. It may be coping but it could be an easier form.

Avoiding the need to work harder trap is #3. There are some things in this world that are not going to change no matter what. The proverbial dead horse is not getting up to pull no matter how hard you whip it. That is not your fault. If you are feeling you are not trying hard enough, use your rational mind to appraise the situation. Does it actually require extra effort? Maybe it requires a different approach or you need different skills. If none of these work, give it a rest and use tolerance skills.

Avoiding rumination is #4 on the list. Rumination and depression tend to go together. Focusing your attention elsewhere can help with this.

What the list’s author calls regulating your rhythms is referred to as PlEASE in DBT. Take care of physical illness, avoid mood altering substances and be sure you are eating, sleeping and exercising optimally for you.

Last but certainly not least on their list is self-soothing. DBT talks about soothing through all of the five senses. What can you think you can do to self-soothe? Treat yourself to something you don’t often do. Get a massage. Buy a high-end chocolate and savor it. Take a bubble bath instead of a shower. The list is endless.

So that is the end of the article suggestions, but I am going to add one more: remember you are more than your disability. Take some time to be you and engage in things you enjoy to the best of your abilities. Occasionally put the visually impaired person away on the shelf. She will be there when you go to get her there off again. In other words, when the going gets tough, the tough go fishing!

Have fun!

Written December 1st, 2018

Go back to the list of “On Assignment” pages

Sue on Assignment: Coping Fatigue?

In my job as a DBT therapist, I am a huge proponent of tolerating and coping. Accept that which you cannot change. Acceptance and tolerance of that which we cannot change reduce suffering. [To read about DBT, check out Sue’s page Teacher, Teach Thyself.]

I believe that is totally true. The Buddha taught us the road to suffering is a desire for things we do not and often cannot have. The Buddha was a smart man. That is why he was the Buddha.

However, when I had a client with physical, social and financial challenges tell me he was sick of coping, the only thing I could think was “Amen, brother. I am with you on that.”

There does not appear to be such a thing as coping fatigue, but there should be. There are days I am sick to death of working around, making do, being tolerant. There are days – in a paraphrase of my father – I think my life and this disease should crap or get off the pot. Don’t just sit there. DO something! I may not be falling into the abyss, but I am not making any progress either. Can we get moving here?!?!

A reader asked why I am excited about possibly being in the APL-2 study even when I am not 100% confident about it. Not in so many words, but I responded that it represents movement and if I don’t have some movement – even if it might be around in circles – I will go insane. Those trials represent my hope for problem-solving and change, the other end of my dialectic.

Sometimes, when I am tired of coping, I go the other way. I say “the devil with it” and take a break from the struggle.  I might snuggle down with a couple of dogs and a bowl of ice cream. (Make that a couple of dogs trying to eat my ice cream!) It is not a bad thing to mentally put my burden down and take a rest from even trying to muddle my way through. Of course, a bit later I pick everything up again and continue on the road.

I went looking for some expert advice on coping fatigue (I actually think I could make some money on this concept. It is a catchy title!). I did find an article from Psychology Today entitled 6 Tips for What to Do When You Feel Exhausted by Life. Close enough.

The first tip intrigued me, and I am not going to get much beyond it – or possibly even through it – in the number of words I allow myself. The point was to give up the Just World fallacy. Just World capitalized. What the hey?

According to Wikipedia, the Just World hypothesis says we reap what we sow. It says bad people get bad things and good people get nothing but good things. That concept is great if you are trying to scare people into walking the straight and narrow, but I am not so sure it always holds water. Yes, to quote Forrest Gump “Stupid is as stupid does”. We often reap what we sow when we do stupid things, but does that apply to something like a chronic condition? Are we bad people because a bad thing happened to us?

I will continue with this. I found the concept intriguing. I promise you it actually has relevance to coping with AMD. Really. I promise.  Hold on…I will get there.

Written November 30th, 2018

Next: It’s Not Your Fault

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Sue on Assignment: It’s Not Your Fault!

Hey! How are ya? Like I said, I got sort of intrigued by the Just World fallacy. I figured I would read a bit more. Knowledge is power.

It turns out, according to Wiki, this fallacy has been around pretty much forever with philosophers in 180 CE arguing against it. In the 1960s Melvin Lerner started to study it in social psychology. He was curious how brutal regimes maintain popular support. The Just World fallacy helps these regimes because people feel when other people suffered they deserve to suffer. After all, in a Just World why would good people be punished? Thus, if you can make a group suffer, others will look down on them because they deserve what they got. Yikes.

Lerner did propose belief in a Just World is important for our well-being. It allows us to have some faith in the future. However, what happens when you are the one who is experiencing the suffering? Not only do other people tend to blame you…a la the Just World fallacy…but you blame yourself, too!!

This is why the Psychology Today author suggested ditching the Just World concept. It is also why DBT teaches two of the lessons it does.

The first one is the nonjudgmental stance. Pointing the finger and blaming is ineffective. It does not get the job done. What it does do is produce shame and guilt.

The second lesson is “everything has a cause but it is not necessarily you!” When I teach that concept I get out the list of risk factors for AMD. Above 55 years of age. Female. White. High blood pressure. Family history of AMD. Sun exposure. A diet lacking in some nutrients. I have the whole lot of those. Yes, I missed blue eyes, smoking lack of activity and obesity, but hey, that is 7 out of 11!

It is not a question of why me, but one of why NOT me?

And did you notice most of the ones I hit are things I could do nothing about? I am a 65-year-old, white female who had a father with AMD. So, shoot me. How is this my fault? It’s not. When all is said and done, life is not fair. There is much that is not contingent upon our behaviors. You did not cause your AMD You are not bad.

So that is the Just World fallacy. Recognizing the world is not fair and just and, indeed, bad things happen to good people may not do much to end your coping fatigue but then again, it could do quite a bit. Are you the type who is afraid you are somehow responsible for your vision loss? Do you spend hours and days trying to decide what you did to deserve this? Knowing the Just World assumption is a fallacy can get you away from beating yourself up. It can remove the burden of guilt. You did not do this. Life is not fair. You are off the hook for this one! Feel better now?

Written November 30th, 2018

Next: Sue on Assignment: Exhausted by Life?

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Salvation: DBT Revisited – 2018

I preface this page with this statement: there is no greater zealot than a convert. I was “converted” to Dialectic Behavior Therapy (DBT) about five years ago when the counseling center needed another skills trainer/ teacher. Since then it has colored my thinking, my approach to therapy and, yes, my life and my approach to my disability.

DBT has been another thing that has “saved” me in this journey thus far. It has awakened my “inner Buddhist” and reminded me that to desire for what I do not have and perhaps cannot have again is the way to suffering. It has taught me to stick to the middle path and shun absolutes as well as to live in the present. (Of course, closer to my own, cultural roots, Matthew 6:28 indicates living in the future through worry is not necessary. Matthew 6:28? Consider the lilies of the field…)

DBT has reminded me what we pay attention to and how we pay attention are actually crucial to our mental health, and even our physical health for that matter. It teaches being mindful (no more than focused attention) of even the most basic of activities. It also is a proponent of gratitude. I quoted someone somewhere as saying happiness is wanting what you have. I would suspect most of us could make a long list of things we have and do want. We have reasons to be happy as well as sad. Hey, that’s a dialectic!

DBT has strong roots in the major religions and schools of philosophy. After all, dialectics is actually a school of philosophy. (If you really want your eyes to cross, investigate Hegelian Dialectics.) But the really cool thing about DBT is it does not expect you to dig up the roots to figure out what it might have to offer. DBT has grown branches and it produces fruit!

The “fruit” to which I am referring is the collection of skills we teach in class. DBT has skills for staying in the moment and not allowing your mind to ruminate on your situation. It has skills for regulating your emotions when they get out of control. It has skills for navigating social situations successfully and perhaps most importantly, skills for tolerating the distresses that come with life and, in our cases, vision loss.

When I was in need of ways to emotionally navigate my vision loss, I was blessed to have my DBT skills “tool box” to reach into and find something useful. Just like Blindness and Visual Services gave me tools to help with reading and moving about in my physical world, DBT gave me ways to navigate in my emotional and social worlds.

If you have not looked at the DBT pages on this site, I would suggest you look through them [check out how to find them below]. I listed the skills as I was either using them or teaching them, so the order is a bit jumbled. If you would like skills listed and explained in a more coherent fashion, there are a number of DBT sites on the web. DBTselfhelp.com comes to mind as a more straightforward resource.

Good luck on your journey. We hope the experiences of those of us walking along, perhaps a bit farther on the road, have been helpful.

Written September 15th, 2018

Finding the pages about DBT

There are several ways:

  • To read some of them, click here for Sue’s Best Pages – Part 4 where you’ll find some of the ones that she’s written.
  • To find them all, there’s a section on all pages called ‘Categories.’ It will be either in the right-hand column or at the bottom. Choose ‘Cognitive Therapy.’  The pages are backward – newest at the top and oldest at the bottom.   I’d advise you to start at the bottom and work your way up. Wish I could change that, but I can’t.
  • Another way to find them all is to find the ‘Search website’ box that’s on every page.  You can find it in the same way as ‘Categories’ (right-hand column or bottom).  They’re also listed backward.

Next: A Freckle in My Eye

Sue’s Best Pages – Part 4

continued from part 3

Part 4 Using the Tools from DBT (Dialectical Behavioral Therapy)

  • “For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.”
  • “DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior.”
  • “One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities.  A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.”
  • “Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.”
  • “DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.”
  • Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?”
  • “Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.”

Next: Coming soon – Technology

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Life is Not Fair

I am capable of throwing one, fine pity party. Nothing is going my way. Everyone hates me, and I will never be able to cope with this! [Lin/Linda: We’ll have a little sing along about this at the end of the page. ::grin::]

There are some days I would be just as happy to retire to my bed with a half a gallon of chocolate ice cream and a spoon -don’t forget the spoon! – as well as a full box of tissue – you don’t want to get your ice cream soggy! I just want to eat myself into oblivion and cry myself to sleep. To face this all the next day…

Dry AMD is a long campaign involving loss after loss. I have been living with – surviving, tolerating, whatever – this condition for over two-and-a-half years now and it can be damn discouraging. What do you do when you are out of ice cream and have to face reality? How do we get back to an even keel?

First of all, let’s look at your physical state. Are you sleeping well? Eating well? Exercising? Taking care of illness? We all know things do not go as well when we are physically out of sorts. If you want to tolerate your vision loss better, take your allergy medication. Walk the stairs. Eat your vegetables! A fit and healthy you is a more tolerant you.

As much as we are hoping and praying and looking every day for a treatment, the name of the game right now is tolerance. How do I tolerate today? …and today? …and today? Sometimes it comes down to how do I tolerate this moment. Depends on the day.

We have talked about distress tolerance skills in other posts. They should be available through a simple search of the website. Quickly here, I want to mention avoiding a black and white attitude in your interpretation of situations. Is it really true that nothing ever goes your way and everyone hates you? Is it true you will never be able to cope? Absolutely are rare in life. If you have even once been successful in coping, that means there is a chance it can happen again. Don’t be so quick to dismiss yourself.

Interpretations are extremely important. The lens we look through upon the world is critical. Try to look at the bright side. Maybe today is one day closer to a substantive treatment, not one more day that must be endured on the way to the grave. It is all in the spin, doctor. Reinterpret and reframe again and again.

And last of all for this page, stop wasting energy fighting reality. No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno. Back to Alfred Lord Tennyson, “Ours is not to reason why. Ours is but to do and die.” Make the best of a bad situation. Put your energy towards things that can be affected, not towards things that cannot.

Maybe the meaning in your suffering will be a classic poem. Could be worse.

[Lin/Linda: As promised: sing along with the video “Nobody Likes Me, Everybody Hates Me, Think I’ll Go Eat Worms!”]

Written August 20th, 2018

Next: No Train for Christmas

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I Know Who I Am

Hello, there once again! How y’all doin’. Today was “interesting”. Somewhere in India our server [not for the website] went down. Yes, we send all of our data to India. Anyway, no server meant no place to take notes, no way to schedule clients and no way to know our schedules! I had a “mystery guest” checking in every hour! “Mystery guest, enter and sign in please!” Who remembers What’s My Line?

Of course, since I had only a way to take paper notes, everything will have to be put into the cloud…but not tonight. Tonight I get to talk at you.

Lin told me she posted some questions about “coming out” of the visually impaired “closet”. She put a video by Fern, a motivational speaker, along with them. Some of the questions concerned whom you may have told and why you may not have told. Fern talks about embarrassment and shame and the judgments and misunderstanding that may have engendered those feelings.

I assume Fern was a child with visual impairment. I assume she had some tough, social interactions growing up. Kids can be crazy cruel. Trying to navigate the ups and downs of elementary school – not to mention middle and high school! – can be tough on a kid who is different.

I was researching relationship repair DBT style and found DBT Relationship Recovery 101. The second bullet caught me. It said “Work on your sense of self- worth”. Wow. A strong sense of your own self-worth allows you to let judgments and insults just roll off your back. In other words, “Who are you and what the hell do you know about me? I know who I am.”

A bit ago I had someone get angry with me and tell me she wanted nothing to do with me. Ouch. I fretted about it way longer than I should have. Then I got into wise mind and had an epiphany: for all my (many) faults, I ain’t all that bad! Her loss!…and yes, every once in a while if I do something cool like going to Summer Academy I think “Not worth knowing; huh?”

And a couple of those faults? I am not above being petty and gloating…I might actually have to work on those…later. ?

Remember I mentioned one of my yoga instructors has a visually impaired child? She is 5 now. One of the reasons I would like to still be working in school this year would be to watch this little dolly take kindergarten by storm. According to her mother, our little girl walked up to the special education supervisor and announced herself with “Hi! I’m new here.” I do believe she has enough moxie for three kids and I, for one, am glad she does.

That is a five-year-old. She seems to have been born with tremendous strength of character. (She flushed about three pairs of glasses down the toilet. She was NOT wearing them. At that point I think she was 3). But what about us? I would contend most of us who have come to visual impairment later in life have track records of competence. We have mastered all manner of things.

“Who are you and what the hell do you know about me? I know who I am.”

Remind yourself you have been there, done that and have the T-shirt – with “winner” printed on it – to prove it. No one gets to judge you. You know who you are.

Written August 16th, 2018

Next: Filling the Pumps

HOme

Sue’s Best Pages – Part 3

continued from part 2

Part 3: The highest-rated pages

I hope you’ve seen the box at the bottom of all our pages where you can rate Sue’s pages.  It’s been helping us to see what resonates with you. It also helps us find pages that we can recommend to others.

If you haven’t been rating the pages, we really wish you would! ::smile::

  • One Foot in Front of the Other
    • Sue writes, “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.”
  • Hindsight is 20/20
    • She writes, “First, you are not going everything black and dark blind. You may not be doomed to progress to end-stage AMD. You did not cause this. There may come a time you are seeing things. There is an amazing amount of hope for treatment and eventually a cure for AMD.”
  • Sight Loss as a Challenge
    • She writes, “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.”
  • Not As Cut and Dried
    • Sue writes, “The takeaway message I got from the driving presentation was this: just as each of us is multifaceted, the decision whether or not to drive should also be multifaceted. How is your contrast sensitivity? How much glare can you handle? How fast is your eye-foot reaction time? How confusing and busy are the places you want to drive? All these and more have to be considered.”
  • Overcoming Uncertainty
    • Sue writes, “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. Keep an open mind and don’t latch onto anything out of fear. Eventually, we will find the way.”
  • Special Favors
    • Sue writes, “‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this????????”
  • Good Thought, Bad Thought
    • Sue writes, “Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?”

Next: Using the Tools from DBT (Dialectical Behavioral Therapy)

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Dual Diagnosis

I promised myself since I am only working part-time I would awaken my internal, sleeping Domestic Goddess. I would do great things! So far all She has done is roll over in her sleep.

Today I finished the cobweb seek and destroy mission. I took my fluffy thing on a stick – and please notice I use all of the professional terminologies! – and wiped down all of the walls and ceilings. The puppygirls followed closely along – sneezing.

I am working up – or in this case down – to shampooing the living room rug. That is going to take a lot of turning the mind and convincing myself to do it.

Well, stranger things HAVE happened; you know. ?

And while I think about shampooing the carpet, it is time for a page! Hopefully, there is something in the email to save me from myself.

Healio listed the five top articles about retinal disease in June. The first one was about intraocular lenses (IOLs) for those of us who have both AMD and cataracts. In Austria, they are implanting lenses that magnify in those who have had cataract surgery. The bottom of the lens sounds like it is more like a bifocal (my interpretation) while the top takes care of far vision for distance. The lenses provide 1.5 magnification at 25 to 30 centimeters ( read 10 to 12 inches) and 3x magnification at 12 cm to 15 cm. I assume that is 5 to 6 inches.

The researcher, Andreas Borkenstein, said that even though the scotomas (blind spots) are still there, the magnification makes it so they obscure less of the image.

They are finding great improvements in best-corrected distance acuity. People with acuity scores of 20/400 corrected to 20/63. Yippee!!!

Borkenstein stated he wants his colleagues to be able to give dual diagnosis patients (AMD and cataracts) hope. Just because a patient has advanced AMD doctors should not tell them cataract surgery is pointless and will do nothing! …Damn right! You tell them, Andreas! ?

In addition to the acuity improvements, contrast sensitivity and color perception also improved. Another yippee!

Now, having used MaxTV lenses, I can tell you, my depth perception can be way off when I use magnification. My low vision specialist warned me about moving and wearing them. Doesn’t work well. I tried to. (So maybe I am from Missouri?)

Anyway, my point is this: nothing was said about depth perception, driving, etc. in the article. I am thinking the neuroplasticity of the brain is such that it just eventually adapts, and you learn how to do all of those things normally. No going to put a cup on a table and missing the table by a foot! Or going to drop cans in a cart and have them rolling all over the floor like I did. Oops. Anyway, not sure if you can drive – or even walk fast – with these IOLs. Need to do more research on that. Also need to see if they have been approved in the USA, Canada, UK, etc.

But that will have to be another page. Bye!?

Written July 10th, 2018

Next: Orphan Drugs

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Zen Habits

I have been at “loose ends” all day today. Alright, maybe not ALL day but definitely this afternoon. This morning I got a haircut and went grocery shopping. I also went looking for shoes. The puppygirls ate one shoe each from TWO – count them 2! – pairs yesterday, and I was hoping to replace them with similar items. No joy. Nothing looked even vaguely like what I wanted.

I came home and went online. I found one pair that would fit the bill. Sort of. If Amazon does not have it, I don’t think you can get it anywhere. Bless them.

Anyway, trying to figure out why I am so discontent and cranky today. I know I am tired. I did a ten-mile paddle yesterday. That was a bit much. (Being tired is a vulnerability factor for negative emotions; ya know.) I did not get into the study I was interested in. I did not see a single pair of shoes that interested me.

The last two add up to frustration and disappointment. If it looks like a duck and walks like a duck and quacks like a duck, it is probably a duck; right? There is probably a good chance this mood is the result of frustration and disappointment. And overdoing it yesterday.

Well, I am going to “treat” my fatigue to a little “hair of the dog”. I have a ride to hip-hop, and I am going to exercise more by dancing. That is opposite to emotion in DBT speak. If you don’t like your emotion, change it! I am down and dancing always brings me up.

That should work some on the frustration and disappointment, too. The joy I can feel when I dance is opposite to those emotions as well.

What else can I do? Well, Zen Habits suggest a lot of stuff that sounds like what DBT teaches. Not surprising since DBT has roots in Buddhism.

For one thing, have compassion for myself. Frustration and disappointment are part of the human condition, and I – in spite of what some people may think! – am human. I am just participating in humanity. And if I were another human, would I not give him compassion?

Then there is allowing the feelings to be. They are legitimate. Let them play out to the end. Emotions have short lives and unless I retrigger them, they will be here for a while and die a natural death. Being afraid of emotions and avoiding them only causes more problems.

Zen Habits has more but I want to pick out the mindfulness one next. Truly, how much different am I today than I was yesterday? Or this minute from last minute? My health is still good. I have a purpose. There are kind souls who care and take care of me every day. Not getting into the study or finding a pair of blue sandals did not change that. Right now in this instant, I am fine. I am fine in this instant and this one. Etcetera, etcetera…

The last thing they suggest is being curious about what actually IS coming down the road for me. I ordered shoes online. Maybe they will be real “finds.” The perfect shoes for me. I was promised there are other studies coming. Anyone interested in finding out what they are? Maybe one of them will be exactly what I am looking for. You never know.

Next: Dual Diagnosis

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Focus

It has been known for years that the concept of a dichotomy between the mind and the body is…well, a crock. Therefore it comes as no real surprise they are finding connections between mental health and eye health. In a 2013 European Heart Journal Flammer et al comment upon the close relationship between the heart and the eyes. They point out how highly vascularized eyes actually are and how diseases of the vascular system have a strong effect on eyes.

Since we all pretty much know stress and other mental health problems have a direct effect on the circulatory system, it could almost go unsaid that mental health concerns affect eyes.

Apparently, it has been left to Bernard Sabel and others, publishing in the EMPA Journal, to state this explicitly. To wit: evidence is strong stress and other mental health problems not only exacerbate eye disease, they are very likely causative factors.

So what does that mean for us? Many of us already have irreversible (as of now, but stay tuned the next few years!) damage to our retinas. However, there are some in whom the damage is still slight. Perhaps there can be serious damage prevented in those folks.

I am teaching mindfulness right now in my DBT class. At the risk of repeating myself (repeating myself, repeating myself….), I want to point out yet again the benefits of a mindfulness/ meditative practice. There is objective evidence meditative practices can actually reshape the brain. [Lin/Linda: since Sue has written several pages on mindfulness and meditation, you can search for those words to read her past pages.]

The Dalai Lama has actively recruited Tibetan monks to participate in neuroimaging studies. They (they being Davidson and Lutz at the University of Wisconsin, Madison) have discovered both focused attention and Open Monitoring meditation have real impacts on the activities of the brain. This includes the amygdala, the ‘fight, flight or freeze’ center, of the brain involved in stress reactions and fear.

Not a Tibetan Buddhist monk? Not a problem. While those guys are much more accomplished than the vast majority of the rest of us, they do not have exclusive rights to focused attention or Open Monitoring meditation. People all over the world of every race and creed can and do practice.

Focused attention sounds simple but needs a lot of practice. It is ‘just’ putting your mind to one thing and one thing only. Light a candle and watch the flame. When your attention wanders, refocus. Refocus. Refocus. Do it as many times as needed. Minds naturally jump around. Don’t be discouraged.

Open Monitoring is pure awareness. There is no focus, no judgment, no attachment. Things flow in and they flow out. The ultimate goal is to stay in the monitoring state, aware of all equally.

This is obviously an advanced form of meditation. Still, even us mere mortal types can glimpse it. Have you ever walked outside into nature early on a still, summer morning? Did you sort of get immersed in the morning? To me, that approximates an Open Monitoring experience.

So, there we have it. Stress reduction? Focus. One thing in the moment. Don’t judge. Don’t covet. Practice gratitude. Pray. When it is put that way, it really is sort of basic.

Written June 22nd, 2018

Next: Stories to Tell

HOme

You Don’t Look Blind

The words for the week are validation and invalidating. Either those words or situations exemplifying those words have cropped up all week.

The online dictionary gives the third definition of validation as “the recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”. In DBT an invalidating environment is believed to help to cause borderline personality disorder. An invalidating environment will punish or trivialize the expression of personal experience.

Invalidating environments were a big topic at the training we did as well as being a big topic in our assigned reading. Then, this week, when I was feeling awful about leaving my school job, everyone kept saying how “wonderful!” it was to be retiring. Nobody ‘got’ me. Every remark invalidated my private experience. Some people even told me how “crazy” I was not to be overwhelmed with joy!

Trust me; these are all kind people. They were not trying to give me mental health problems. (They have been doing that for the past 40 years! Oops! I did not say that.) They were just projecting their desires on to me. Either that or they did not know what to say.

All of this got me thinking about the invalidation we experience with vision loss. How many people have told you it is not that bad? Then there is my all-time favorite: “you don’t look blind!” Write in and share your favorite invalidating remark.

Jamie Long wrote The Power of Invalidation: 5 Things Not to Say. I recognize a number of them as things I say or have had said to me. How about “it could be worse.”? Then there are the twins, “ I am sorry that” and “you should not”. They are members of the “Feel-that- way” family. Long also reviews “Don’t think about it. Just move on” as well as “ I am not having this conversation!”

So how to be validating? Long has a short list of suggestions for that. She states that validation does not mean agreement. Emotions are different from behaviors. You can recognize a feeling without agreeing with a behavior.

Long also suggests we not become defensive, or at least try. This is not only if you are the person receiving the invalidation but also the person delivering the invalidation. Like I said, people react from their own feelings and realities. They may not match yours. They might also be at a loss as to what to say.

And if you step in it with what you thought was a supportive remark? Accept at least a part of the blame for things going off the rails. Long also suggests reflecting the feelings or even summarizing the experience. Heavy on the feelings involved, that is.

Last but not least, there are some situations we just can’t fix. Muddling around and making some inane comments in hopes of making things better doesn’t work. Better to just listen. And if the inane, ‘helpful’ comments are aimed at you, cut the other guy a break and actually tell him you don’t expect him to fix it. Ask him just to listen.

So those are our (or at least my) vocabulary words for the week. Quiz next week! Class dismissed!✌?

Written June 8th, 2018

Next: Why Drop Out?

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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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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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The Ends Justify the Means

Who’s in charge here? I am.

Or at least I generally believe I am. If I want it, it will happen. Either that or I will die in the attempt. I am relentless.

Besides making me insufferable, it also means I have a strongly internalized locus of control. Who is in charge here? Me.

I have discovered over the years that a strongly internal locus of control is good for many things. What I discovered when I did a little research this evening was one of the things it is good for is frustration tolerance.

Why was I researching frustration tolerance you may ask. Well, it dawned on me as I waited nearly an hour for my ride home from the gym: having a visual impairment could tax the patience of Job. This is frustrating business!

The article I found on quickbase.com makes a case for an internal locus of control as being the foundation for good frustration tolerance. It suggests, for one thing, you acknowledge your own choices.

OK. Why am I sitting in the YMCA lobby waiting for the stupid transportation? Because I want to go to my exercise class. My choice. I could have gone home from work. My being here was my choice. I was in charge.

Another thing they suggested was changing your thinking. Who was in charge of how I evaluated the situation? I was. I could have thought of it as ‘found time’ for goofing off. After all, in that time I did beat two levels of Panda Pop. Fretting over what ‘they’ were doing ‘to’ me would give away my power.

Another suggestion was imagining how things could be worse. Maybe even use argument ad absurdum just for funsies. If I had no ride to get me home from the gym, I could never exercise again! I would become a 500 pound blob. I could not fit in the bathtub and I would be filthy and disgusting and even the puppies would shun me. I would die miserable and alone! Aggghhhhh!!!!!

Get the point? Things could be worse.

In the end, when all is said and done, which ‘devil’ I chose is up to me. I am in charge – I get to say whether or not I wait nearly an hour for transportation. Variations on this theme happen every week. I can practically guarantee they will be late. I could sit home watching TV on my iPad and eating chips (sometimes an attractive alternative!) or I can chose to go to the gym.

If I chose the gym, I chose to wait. My call.

Sometimes the ends really do justify the means. Sometimes you have to put up with whole loads of cow poop to get what you want. However, what you want is ultimately your decision. Do you put up with the conditions, crappy as they may be? You decide.

Seeing things from the perspective of it being my choice makes things better for me. My frustration level goes down when I see all of this nonsense as just things I have elected to tolerate to get what I want. In this case, the ends justify the means.

And who’s in charge here? Me.

Written February 9th, 2018

Continue reading “The Ends Justify the Means”

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”

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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