The Truth Is Out There

Another Saturday afternoon that I don’t feel like doing a cursed thing. In DBT this week we talked about not discounting positives in life. To practice what I preach I would have to say I exercised, fed and walked the dog, cleaned up and fed myself. I have tried to do dishes in the dishwasher but the top rack stuff did not get clean. Last time this happened, I poured a whole bottle of vinegar in the bottom of the machine and let it sit over night. The acid ate whatever was gunking up the works.

Hey, housekeeping tip!  We aim to cover all possible topics. Even those I know little about!

I continue to look for an answer to how many degrees of arc make up a central vision loss. Dr. William Goldberg in A Guide to Understanding Your Peripheral Vision says a normal visual field is 170 degrees. That is almost half a circle. Of that, 100 degrees are peripheral vision. 70 degrees are central vision. If you think of a protractor, that would take a pretty good chunk out of the middle, but you would still have 50 degrees of arc on either side of that wedge. Not as bad as some representations I have seen.

No clue if I am figuring this out correctly, but it’s a place to start. I asked the representative from the International Macular and Retinal Association the answer and she did not know either. She is going  to ask around.

Peripheral vision is broken up in three sections: far, middle and near. When we pick a preferred focal point for eccentric viewing, we naturally try to pick a place in the near peripheral. Color vision and discrimination are worse on the edges.

I have a couple of more in-depth articles to read on that. To be continued.

Still interested in the Nat Geo article on ending blindness. I learned all sorts of stuff about the eye. Did you know the eye is the only place you can look right at the brain without drilling a hole?  Eyes are a part of the brain!  During fetal development the eyes grow away from the brain, sort of like on stalks; maybe? The stalks analogy was mine.

Eyes, like the brain, are immune privileged. That means it does not have a strong immune response to ‘invaders’. You want to try a new treatment and don’t want the immune system to go crazy? Try it in the eye. Having the ‘perfect’ place means all sorts of studies can be done in the eye. More experiments mean more chances of finding cures. Stem cells and gene therapies all have a better chance of working in the eye so why not start with trying to cure an eye disease? Great idea!

One more time, if we have to be losing our sight, this is the best time in the history of man to be doing it. Keep the faith. To quote Mulder and Scully, “the truth is out there”. We are hot on its trail! Continue reading “The Truth Is Out There”

“Yes, but…”

Hey, there! The good news is I seem to be on the road to recovery! My husband says it is because I rested like he said. My exercise-addicted friend says it is because of the fresh air and exercise I got this morning – cross-country skiing at the park! – and I think it might be both of those plus the cold/sinus medication I have been taking.

Combination of the old and the new. Best of both worlds.

More good news for me is I get to teach for another 12 weeks. It has been a couple of years since I taught distress tolerance so we decided to switch it up.

The ‘little boss’ suggested it. She is getting frustrated I have been waiting so long for the clinical trial. (I can sort of understand the sentiment.) Anyway, her thought was use me while they have me. Either I might have to spend time in Philly – or I might get very blind! Good first thought. The second one…

And guess where that leads me? Yep. My topic for this page.

I have done two pages on being unmindful of problems. DBT teaches us not to ruin the moment by worrying about when a positive situation is going to end. We are not to worry about whether or not we deserve it or what will be expected in return. (Don’t worry. A side benefit of my teaching a different module is I will be reminded of different topics!)

Whenever I ask in class how many people are masters of the “Yes, but” comment, 3/4s or so of them sheepishly laugh and raise their hands.

Let me tell you something: the rest of them are lying! I don’t think I know anyone who can say he doesn’t fall into that trap.

“Yes, but” has become so common some business publications have written about it as a syndrome. Somebody suggests a solution and we shoot it down. Someone says how well something is going and we doom and gloom him about what may happen next. What is happening here?

Because they are coming at it from a business angle, the publications say it is fear of stepping out of our comfort zones that causes “yes, but” syndrome. They say people reject brainstorming ideas because they are scary. Fear of innovation or more work or some such a thing.

All very possible in that sense. But how about people just in daily life? I, of course, have a theory. Not sure it is original, probably not. I did not look it up so if you know that this is so-and-so’s theory of whatever, let me know and I will credit him.

Anyway, my theory is we are trying to let ourselves down easy. What do you think? Does that ring true? I don’t want the gut wrenching drop when this is over, so I will keep reminding myself it is coming? I will let myself down in stages.

Problem is, do we want to diminish our good times like that? Why not savor them? Drink them dry and have the positives to remember!

Sound like a plan? Yes, and… Continue reading ““Yes, but…””

Should On You!

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

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

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

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

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

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

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

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

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

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

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

Queen of Denial & Her Friends

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

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

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

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

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

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

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

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

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

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

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

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

Stop Smoking Now!

This might be turning into the bad habit series for these pages. After doing the page on high BMIs and increase AMD risk, I looked up ‘hot topics + AMD’ and found smoking listed as numero uno. OK. Smoking it is.

I don’t smoke. Never did. It smells and is ridiculously expensive. Worse yet, it is bad for your health. And when I say health, I am including eye health.

BrightFocus Foundation in Smoking and Age-Related Macular Degeneration says smoking brings oxidants into the body. Chemicals can also damage cells. This activates the immune system which can further damage your eyes. These are ways cigarette smoke can increase your risk of AMD. I am sure you have heard cigarette smoking is the largest, modifiable risk factor for AMD. Those are the reasons why it is such a risk.

At least 4 of the Marlboro men died of lung cancer

The problem is it is hard to quit smoking! You have been doing it for years. Many of you remember the coolest commercials on TV were cigarette ads. Remember the Marlboro man? How about Joe Camel? And ladies, how can we forget those long, sleek, sophisticated women who sold us Virginia Slims. Could Joe Camel have steered us wrong all those years ago? Let’s just say Madison Avenue certainly did a number on us!

Anyway, no one ever showed us the Marlboro man using a white cane and hacking a lung out, so we believed the ads. Lots of us smoked and became addicted.

If you have AMD or live with someone who has AMD, you have been told to stop smoking. Quit.com has a whole list of suggestions on how to do this. They are reasonably good. For example, one of them even goes back to one of my favorite psychological theorists, Viktor Frankl, when it says know your reasons for quitting. Remember Frankl said if we have a why, we can endure any how? (“Those who have a ‘why’ to live, can bear with almost any ‘how’.”) Great philosophy turns up in the damnedest places.

I would add a few more from my DBT distress tolerance toolbox. Stop being sorry for yourself. Be mindful and practice gratitude. Be willing, not willful.

You are totally right. Life is not fair and now they really are trying to take away your one bad habit. It is for your own good. Stop dwelling on what “they” are taking away and think about all you have. Get involved. Substitute some fun activities for smoking, or better yet, do for someone else. Turn your mind. Continue reading “Stop Smoking Now!”

Mind & Body

Several times I have mentioned I am back to teaching the emotional regulation module for DBT. We have a great class and I love teaching. This is one of the directions I hope to go in when I am no longer able to do psychological testing. Teaching is easier on the eyes. Hope for the best.

Plan for the worst and planning for the worst includes finding rewarding things to do ‘after’. Do not leave yourself without viable options.

Anyway, getting off the soapbox and getting behind the lectern…I started on the topic of sensing today. Many of you may remember back when people talked about the mind/body dichotomy. Back in 16-something or other the philosopher Rene Descartes proposed a theory that said mind and body are so very different there was no way they could truly interact.

Old Rene had a very good run but back in the 1990s scientists were discovering mind and body are not distinct at all! In fact, there is an elegant feedback system between mind and body. Enter the concept of sensing.

Marsha Linehan refers to sensing as being aware of your body and brain changes. Sensing body and brain changes is experiencing emotions. Why is that? Because Linehan believes emotions are actually changes in your brain and your body.

Linehan includes sensing as a way of identifying emotion. As a way of identifying emotion it works well. At least one study has shown emotional reactions are hard-wired and people all over the world say they experience the same emotions in their bodies in the same way. Have a certain set of bodily sensations and you can usually name the emotion that goes with them.

Linehan also suggests being an observer of yourself. Notice how your postures and mannerisms express your emotions, often without you even being aware.

Ever have an obstinate three-year-old in your presence? Did he cross his arms and hunch his shoulders? He was defending and no one was changing his mind!

But you know what is wonderful about postures? They can be changed and by changing postures emotions can be changed.

DBT – as well as many other sources, see Amy Cuddy’s TED talk about how your body language shapes who you are – believes one of the ways we can influence our emotions is by altering our body language. It is sort of a postural opposite to emotion. Find yourself slumping? Sit up! Find yourself in a closed posture? Open up! An act as simple as sitting up in your chair can improve your feelings of personal power. Uncrossing your arms can make you more willing to listen to a different point of view. It is magic in a little postural adjustment. Cool.

People ask what they can do to improve their moods when they are depressed over their diagnosis. I recommend education, support groups, therapy, exercise, etc. But if all that seems too much? Sit up! Like I said, there is magic in a little bit of postural adjustment. Be your own magician. It works. Continue reading “Mind & Body”

Fake It Till You Make It

Depression. We have hit this topic from several angles before. We are going to come at it again. Lin said there are a number of new people coming on and they are suffering.

These people are suffering with helplessness and hopelessness. Feelings of helplessness and hopelessness are closely aligned with depression. In fact, back in the 1960s Martin Seligman proposed the theory that depression is actually the result of helplessness. Beck has published a scale that measures hopelessness. The Beck Hopelessness Scale is a good measure of depression and also suicidality.

Hopelessness is the feeling that all hope has been destroyed. You are facing a dilemma that cannot be solved. Hopeless people see nothing positive in their future. They believe they are bereft of skills and options for getting themselves out of the mess they are in.

Ain’t they happy thoughts?

Anyway, some people feel that way when they get a life-altering diagnosis like age-related macular degeneration. They see nothing at all good in their future.

Beck Depression Inventory-click photo for larger image.

The Beck Hopelessness Scale is available online sans scoring. Take a look at it and if you agree with a fair number of the negative statements on it run, do not walk, to your doctor and ask him/her to help you get medication and counseling. You do NOT need to feel this way.

A good therapist should be able to help you deal better with what is ahead. Your therapist should help you to build positives and successes in life. Remember the old chestnut: nothing succeeds like success! What have you accomplished this far? What else can you expect to accomplish now? Go for it! Remember you are a survivor with many battles behind you. This is just one more.

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.

It may be that your greatest accomplishment in life will be being a positive model for others. Show them how it is done.

It doesn’t matter if you feel like a fraud. It is the brave front they will remember. Besides, fake it until you make it works, so you will get benefits from your award-winning performance!

I am going to refer you back to all of the pages on DBT distress tolerance for more therapy ideas. DBT ‘borrows’ from some of the finest therapies there are and puts them all in a neat package, so I suspect you will find something useful.

Beyond that, find a way to build hope in your life. Speak with your religious adviser. Pray. Plan a party or a trip. Encourage others along their roads. Save an animal from the shelter. Plant a tree. Invest somehow in a positive future.

Other ways of investing in a positive future? Volunteer for a clinical study. Write your story for this webpage. Help others in the same fix we are in! Believe.

Progress is being made every day. The Audacious Goals Initiative project is alive and well, as are similar projects in other countries around the world, and funding research. Individual drug companies battle each other to bring new treatments to the market. It will happen eventually. The breakthroughs are coming. Believe. There is hope. Instill it in yourself. Instill it in others.

Continue reading “Fake It Till You Make It”

Independence

In the past few days at least two comments have been made about my independent nature. In some ways that nature has been a conscious choice. My mother was a very dependent person and I did not find it an attractive trait – especially when she wanted me to be the same way! Can you say ‘reaction formation’?

Other times it came out of necessity. I was single until I was 37. If it was going to get done, I was going to have to find a way to get it done by myself.

These comments about my independent nature coming one on top of another made me start to wonder. So what exactly is independence? Am I really all that independent ? And how do we retain as much independence as we can as we lose our sight?

Dictionary.com gives the first definition for independent as “not being influenced by others in matters of opinion, conduct, etc. Thinking for oneself.”  Lower in the list are definitions including “not relying on others for aid or support” and “possessing a competency”.

Speaking from me and not from the perspective of an expert, I have also thought the concept of competence to be important when you are talking about independence. If I can do it myself, I don’t have to worry about dealing with someone else to get it done.

A corollary to that is, if I can pay for it myself, I don’t have to kiss any tushies to get it done! Thus, for me, having skills and resources was the bedrock of my independence.

Perhaps one lesson here is “forewarned is forearmed”. I started some financial planning long ago. I wanted to make sure our financial status would allow us some choices when I finally lose my vision or sustain any other natural disaster. I am working as long as I can, but if I lose my sight tomorrow, we will be okay financially. My decisions will be (and are) made based on what I want to do rather than than what I can barely afford. Independence.

Same idea about competencies. I keep learning and practicing and storing competencies away. I think I have said it before, but I only ask for help when I am flummoxed. If I can get it half done without help, it is half done before I ask. I make a good stab at things.

In talking about staying independent as a blind person, most of the websites talk about skills. New skill cultivation is an absolute requirement for independence.

Bringing me to another thought: belief in personal power. Arrogant little soul that I am, I generally believe I am competent. I will go over, around or through but I will find a way to get there! It would seem to be that to have independence, you have to believe in yourself. It can be done and we can do it!

I know people who confuse independence with social isolation or lack of responsibility for others. I have not found these things to be the same at all. Often I am independent because I am a part of a network.

I contribute what I can and receive from others in turn. People complement each other.

Those are my musing on the subject of independence. Gotta go get ready for hip hop….bringing up another stray thought: physical fitness leads to health and competence both of which increase independence.

Gotta go! Continue reading “Independence”

Is Insight Overrated?

Today was DBT class again. I taught some thoughts about emotions. One of them was that emotions love themselves.

This is an important point to understand. Emotions are self-perpetuating. They want to stay around as long as possible. Doesn’t matter if it is a pleasurable emotion such as happiness or a not-so-pleasant emotion such as anger. That emotion wants to be with you for a long, long time.

Think about this and you know it is true. When you are happy, you can tolerate all sorts of negative things. Nothing is going to dampen your spirits.

But what if you are unhappy? It can be the best day of the entire year and you never notice. The sun hurts your eyes and the birds are singing off-key! You won $10,000 but it should have been $100,000. Nothing ever goes your way!

Things get more interesting when you add other people to the mix. Being annoyed with one person – he is so grumpy! I can’t stand people! – can lead you to being annoyed with the next person. When that person gets tired of being snapped at for no reason and snaps back? Aha! Confirmation! I should be irritated. All people really are idiots!

In other words, emotions can set the stage so you unwittingly help keep them going. Emotions organize thoughts and behaviors in such a way that they are reinforced. Neat trick.

There is one tried and true DBT skill that can deal with emotions trying to self-perpetuate. This skill is opposite to emotion. Some examples of this would be putting on upbeat dance music when your sadness is telling you that you should listen to a dirge or starting a project when you have no motivation. Opposite to emotion can stop your downward spiral and get you going up again.

It is important not to spiral too far down. You don’t want your negative feelings to become strong enough to become a mood, your usual way of feeling and responding.

It is also important not to forget that emotions are contagious just like the flu. Hanging around people with a positive attitude can bring you up while being with people who moan and complain all of the time can really bring you down. That means you need to pick your associates carefully. Did you ever hear the saying “lie down with dogs and get up with fleas?” Negative emotions in this case are the fleas!

And on a sort of parallel topic, if you want to avoid perpetuating a depressed mood, it is probably a good idea not to get so introspective. In a slightly old study, Lyubomirsky and Nolen-Hoeksema (1993) discovered people who ruminated on their problems in an attempt to understand themselves were resistant to positive distractions like opposite to emotion even when they believed it would elevate their moods.

The conclusion? Sometimes insight is way overrated! It is much more productive to just go and have fun.

To reiterate: emotions love themselves and will try to set things up so they stay around for a long time. The best way to solve the problem is opposite to emotion. Continue reading “Is Insight Overrated?”

Counting Pennies

Greetings from the lunatic fringe…Or not. Which is sort of the theme of this page. To quote a corruption of an old poem: if you can keep your head when all around you are losing theirs….maybe you don’t understand the situation!

What I am trying to say is, life can be crazy! When you are dependent upon others, other people’s late meetings and dead batteries can all make life, well, very interesting. Crazier, in fact.

Yesterday my usual ride from work was staying late. Unless I found another ride, I was staying late. Staying late meant no weekly walk with a friend and no yoga. Went to backup ride. First problem solved.

Then I get a text from my ride home from yoga. Dead battery. The weather has been brutally cold. After some finagling, I actually ended up with three potential rides home (I love my fitness community!) and I was still able to go to yoga. But that is not the story for the page. The story for the page is this: I did not stress out!

How the devil did THAT happen? Gulf Bend Center published a webpage entitled The Four Stages of a Stress Reaction. It is sort of like the diagram we use in DBT to discuss identifying emotions. The first step is what DBT calls the prompting event (also called trigger) and the article calls the demand. You folks know all about demands. In this case my prompting event (demand) was being faced with no evening activities.

DBT calls the next step interpretation and the article calls it ‘appraisal of the demand’. Appraisal has two parts. First you determine if the demand is a threat and then you decide if you have the resources to meet it. These questions are the crux of the matter.

Was it a threat? Yes, but I would only miss one evening of activities. I might be able to do half. That is walk, but no yoga. This variation in my schedule was uncomfortable but not a crisis. I used a comparison skill (could be worse!), reframed and did not catastrophize. That is half the battle.

The other half was my estimation of my resources. Would I be able to meet the demands? Hey, the girl has people! People for whom I am grateful everyday. I could most likely meet the demand. A few months ago I would not have been able to say that, but I have been actively working on developing plans and backup plans for months now.

I had confidence things could be worked out.

Otherwise? I would have bitten the bullet and looked at all of the positives I have collected. This is another DBT skill. Collect positive experiences like pennies in a piggy bank. If things turn to crap, counting your ‘pennies’ can help you realize there is a lot of good in your life. I don’t know about you, but in the positive ‘pennies’ department, I am a millionaire. (Did I mention I know fantastic people?)

The article goes on to discuss the physiological reactions we experience to threats, responses to the demands and a ‘bonus’ item (the title really said 4), returning to baseline. DBT emotional regulations talks about bodily reactions and action urges, so, like I said, they have their parallels.

My opinion remains the second section, interpretation of the level of threat and the strength of your resources to deal with that threat, is still the most important part of the whole thing. Use your skills to compare and reframe. Count your positive ‘pennies’ and amass your resources. It may allow you to understand the situation totally and still keep your head. Make all those other people wonder what your secret is!

Continue reading “Counting Pennies”

One Year Anniversary: Part 2 My Myths

Just wrote the page on my ‘first birthday’ as a visually impaired person a few days ago in real time. Then this week I taught myths in DBT. My brain sort of put them together and I started to think about myths about the visually impaired.

There are all sorts of pages online about what fully sighted people think – sometimes totally incorrectly – about the visually impaired. But what did I think was going to happen to me? What are you thinking is going to happen to you?  Those are the important questions. Who cares what those pesky, fully-sighted people think about us??

When I first lost my second eye and had to take a leave of absence, I thought I would never work again. Did not happen.

I was out for about a month. Land speed record? Yeah. I told my blindness and visual services guy I was (and am!) a pain in the butt and he would be doing himself a favor to get me back in harness as soon as possible.

My first anniversary for being back to work will be something like late March. It might not last forever, but I have gotten at least a year’s reprieve. I am slowly transitioning into more ‘low vision friendly’ work and even when I cannot test anymore, I expect to work at least part-time.

I am not an anomaly! (OK, I will accept strange, different, quirky but not anomaly.) National Federation for the Blind reported that in 2014 approximately 40% of those with “significant vision loss” (don’t ask me exactly what that term means) were employed. The stats are not fantastic, but if you want to work, it is possible.

I also thought I was going to sit around the house bored to tears and depressed. I had my moments (several of them!) and expect to have more but in the big picture, I am just about as engaged as I was before my loss. This morning were my two, usual classes at the gym. Tomorrow is a hot yoga class. Last week I went to one job party and next week I am going to another. I have plans to go to a concert next month.

OK, so I am not getting out of town as much as I would hope but at least I am getting out of the house!

Those were my ‘biggies’ as myths. I also had a few other ones. Getting around would be impossible, for example.

Sometimes my transportation arrangements are worthy of Rube Goldberg, but somehow I get there.

Then there was I will be all alone. Nope. Crazy, but people volunteer and go out of their way to help. I have become part of at least one person’s master plan for getting into Heaven! Who would have thought that one?

So right now all those myths are not coming true. Grain of truth in every one? Of course, that is part of the definition of myth. But on the whole, not so bad and we continue to take things one day at a time.

So here are your discussion questions: what were your myths about being a visually impaired person? How much truth was in them? Continue reading “One Year Anniversary: Part 2 My Myths”

The Waiting Game

Yesterday was my third appointment with Regillo. Quite frankly I was hoping for great things. Hoping I would get a definitive answer and it would be positive! No such luck. My ‘answer’ was another “maybe”.

What criteria are they using? No clue. I was told my eye condition certainly qualifies me. Beyond that, I got no inkling of what I need to do to move up the list.

After a year and a half, I am getting more and more frustrated and antsy. If there is a way to become a prime candidate, I don’t know what it is.

Anatomy of the eye-click on the image for more information

I did learn a few things. Contrary to what I read, the good doctor says everyone has a suprachoroidal space (SCS). [Lin/Linda here: the SCS is the space between the sclera (outer part of eye) and choroid (space below RPEs).  It’s important in both clinical studies Sue is referred to because both insert the stem cells into this space; more about the clinical trials below). Not sure why the difference between what I read and what he said. I know I read something about ‘forcing’ (my term) an SCS in guinea pig eyes. They did it by injecting saline solution between the appropriate layers. Maybe the difference is between having a space and having a medically useful space? I might be wrong but I got the impression the delivery system works better when there is fluid in the SCS. Maybe not. Anyway, everyone has one. I am just not sure if you need the fluid to accommodate the delivery system. If you really want to know, check with your eye doctor. I am still trying to piece this all together.

The next thing I found out was the Ocata/Astellas study may resurrect sooner than I was originally told. I had heard two years or more and now I am being told 2017. Sweet.

I was asked which one I preferred. The one I would prefer is the first one to come to fruition! I will be dancing in the streets to be asked to participate in either one of them.

So that is where I stand now. I have been given two strong maybes. Is that a guarantee I will get something or do two nothings equal nothing? It is driving me crazy!

So back to practicing my distress tolerance skills. I have to ACCEPTS my situation. Engage in activities and contribute to others. I have to compare my situation to those of others and be grateful; things could be worse. Doing things to laugh will help me to have opposite emotions and I can push away problems I cannot solve at present. I can also have pleasant thoughts and intense sensations that distract me from my frustrations. It can be done. I have done it for a year and a half. I can keep on.

written 12/16/2016

Continue reading “The Waiting Game”

Accentuate the Positive

Should and must. Must and should. I should have written this page weeks ago before the holidays. Oh well, hindsight is 20/20 and I just need to accept I did not think of it. Nobody is perfect.

Sometimes I get out of sorts with my husband’s approach to life. As social as I am, he is reclusive. I like to do. He likes to relax. Causes a little tension. Especially now since my wings have been clipped and I am dependent upon drivers.

Lin made the comment it is too bad holidays cause such stress and conflict. They ‘should’ be fun. They are ‘supposed to’ be good family times. Oh my. Guess who got a page idea out of that!

Expectations of great times are really rife with potential booby-traps. It is hard for real life to meet expectations we may have. I don’t know about you, but I don’t live in a Norman Rockwell painting. My life is certainly not ready for the cover of Life magazine! Having expectations worthy of Norman will lead to disappointment the great majority of the time. Like 99% for example.

Karyn Hall wrote a list of holiday coping ideas in the aptly titled Coping Ahead for the Holidays. She points out beliefs can really mess us up. DBT calls these myths. Things like “Other families have conflict free holidays. We need to, too.” Yeah. Right.

Hall also suggested we watch where we focus our attention. You want to know what is going wrong? Oh boy, can I tell you!  What is going right doesn’t get as much attention. Maybe I should turn that around.

Then there is acting according to your values. Shakespeare said it well. “To thy own self be true.” If it is not ‘you’ or something you value, maybe it should not be your goal.

Do less is another one of Hall’s suggestions. This is a holiday, not a competition. When there are articles and even a movie about ‘surviving’ the holidays, there is something wrong!

Hall’s fifth point is practice gratitude. That goes along with paying attention to the positive. If you make a conscious effort to be grateful, you have to make an effort to find something to be grateful about. “Accentuate the positive, eliminate the negative, latch on to the affirmative ….and don’t mess with Mr. In-between. Dum, dee, dum, dee, dum”
(Johnny Mercer, 1945) ….sorry. Got into a little swing dancing there?. World War II music was fun and upbeat for a reason.

Hall’s last point was to have a plan for what you know are going to be the rough spots. Sit home and twiddle my thumbs? Heck, no! I have lined up some activities with like-minded folks so I don’t have to choose between sitting home being miserable or hauling my husband around and making him miserable. Foresee the problems and fix them ahead of time.

So that is coping for the holidays. Sorry it was a little late. Surviving the holidays can be rough for anyone but it can be harder for us folks with ‘challenges’.  Hopefully these few simple ideas will make things better next year. Continue reading “Accentuate the Positive”

Reflections on 2016

Happy Monday! I was at my school job today, racing deadlines. It will be touch and go for awhile. Lots of stuff due before the holiday. People should know better than to create deadlines like that.

Yesterday I went to a special ‘killer yoga’ session run by my yogini. Some of you might remember there are many people – including yours ever lovin’ truly – who have sadomasochistic relationships with my yogini. She kicks our asses and we say “thank you” and come back for more!

Since yesterday was no exception to the rule, standing up, sitting down and walking are all adventures today. I am sore from the bottom of my rib cage to the tips of my toes.

This is actually an example of distress tolerance through sensation. Remember the S in ACCEPTS? Since I have been in pain rather frequently today, it served to take my mind off of a lot of other things. For example, just now thinking about what I did not think about reminded me I was not frustrated over the clinical trials at all today. Too busy squealing in pain every time I stood up.

My yogini also did an exercise for transition, the end of one year and the start of another. She had us write highlights of 2016 and what we learned from them. From there we looked for themes. Then we did the low points and what we learned from them. Ditto on themes.

It was sort of interesting because my themes were the same for both lists. People are generally good. Others will come to your aid if you let them and it is rewarding to go to the aid of others. Basically, community is a good and necessary thing.

The other thing I learned from my lists was I – and by extension, I believe you as well – am a lot stronger than I ever would have believed. I have weathered one wicked year. Not only am I still standing but I have adapted and grown.

We received a nice note from one of you. This was also the year this woman’s vision became very bad. She credited us with, essentially, showing her the way. She thanked us.

We humbly accept the thanks but I would like to point something out. That woman also told us she was networking in her community. She is telling people about her eye disease and allowing them to help her. Not only that but she is finding more and more people with degenerative eye diseases and helping them! This woman is doing great things! She is probably doing more than she ever thought she could or would. She also is stronger than she ever thought she could be.

So I guess that is 2016 in a touchy, feel-y, new age-y, yoga nutshell (which makes me wonder again how anyone who can encourage thought exercises like that can be such a merciless drill sergeant!) It was a bitch of a year, but it had its value.

Lessons? Find your community. Help and be helped. You are stronger than you think.

Written 12/19/2016

Continue reading “Reflections on 2016”

How Am I Supposed to Get Home?

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

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

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

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

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

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

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

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

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

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

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

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

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

A Life Worth Living

Friday morning. We have gotten to the end of another week. Yippee!

My attitude towards work is a dialectic. (Back to teaching DBT so I am thinking along those lines.) The woman who fought hard to get back to work is the same one who says TGIF.

I sometimes wonder about myself. When the alarm goes off entirely too early, my first thought is “There has got to be a better way.” Could that be true? Is there a better way?

The purpose of DBT, as I discussed, is to have a life worth living. What do I consider – or what do you consider – to be a life worth living?

Speaking for myself, physical health is the bedrock. Someone a million years ago said that “if you don’t have your health, you don’t have anything”. I believe him. I exercise and use the body. That component of my life will have to stay.

Socialization is absolutely necessary for me. I go a little crazy when I am not out and about. I have the exercise community. Friends. I have people at work. I imagine I could get away with leaving my jobs and those people but I know I would have to find extra socialization opportunities. Maybe volunteer.

A life worth living to me also means the ability to go different places and have different experiences. That means not only having health but having money. I could probably get away with not working but my friend the accountant keeps talking to me about inflation and the shrinking value of the dollar. Would I have enough money to not only keep us in the style to which we have become accustomed but also to fund my wanderlust and love of the challenge?

Never knew it but I may be a ‘vitalist’. (I always thought people were right when they said I was a nut!). Found a quote I like: “Without being aware, I think I was being indoctrinated into what was called vitalism,the idea that what makes life worth living, the good life, consists of accepting challenges, solving problems,discovery, personal growth, personal change.” – Edmund Phelps. (economist, Nobel prize winner – don’t worry. I looked it up.)

I am a bulldog. I am relentless. I get a serious kick out of the quest. Right now most of those challenges come from work. I might be able to find some in this work, what is looking more and more like education and advocacy for AMD folks, but I am not sure it would be enough.

Add to all of that needs to continue to learn, to be in nature and to be with animals and you have the elements of my life worth living. Right now that list is telling me I should continue to work. Later, when I cannot work any longer, it will be a guide to structuring what I want in my ‘new’ life.

Here come the thought questions:

What constitutes your life worth living?
How can you have those things even with AMD, maybe blindness?

Think about it.

Continue reading “A Life Worth Living”

All I Want for Christmas

Another week is over. I cannot believe how time flies! Not much happening here. Since it is the first week of December in real-time, my husband wanted to know what I want for Christmas. The house is bursting at the seams with stuff.

I certainly don’t need stuff. What I want to do is go skiing.

My husband is not sure I can. I don’t get it. It has been 10 months since my second eye went bad and he has been here with me the whole 10 months. I navigate really well but he still thinks I will run into a tree! I really have fallen over things only twice in all that time. Both times it was dark and the contrast was poor. Mid-afternoon, white snow, green tree. I think I will be good.

My friend has sort of been the same way. For weeks she has gotten out of the car and walked me into the Y. I realize it is out of concern but what am I going to do? Run into the side of a car? Cars are pretty big. I think I can see them.

I know they do not have the benefit of being able to see what I see. If they could, I think they would worry less. I believe most people think I am more debilitated than I actually am. They get afraid of my doing things I have done for years.

Some people seem to have a one size fits all notion of disability. If I am visually impaired, I must have every characteristic on the list. There are certain things that by definition I cannot do.

We all know intellectually this is not true. There is a saying in ‘the biz’: when you have seen one autistic child….you have seen one autistic child. The same could be said for AMD oldsters or those suffering from any disability. We are all different and need to be treated as individuals. We even need to be treated differently from situation to situation.

Categorizes and conceptualizations are great – I make my living using them every day – but they are primarily for the convenience of the people doing the categorizing, not for the person being categorized.

And when that categorization puts more limits on me than the condition itself, I get pissed! I hate being told I cannot do something. Especially when there is no real evidence one way or another.

Matters of public safety, of course, are a different story. I cannot be going 65 miles an hour down the road. I am not adequately visually aware. But walking across a parking lot at 3 miles an hour or meandering down the slope? I believe those are still within my realm of capabilities. I just ask for the opportunity to try.

written 12/2/2016

Continue reading “All I Want for Christmas”

The Driver’s Seat

Lin asked me to look at some of the conversations on a Facebook site – not hers. It sounded like they were talking about the defunct Ocata/Astellas study. I concurred that it sounded like it was the same study. I also decided that, compared to the ‘what for’ these people said they were giving the research team, my incessant holiday greetings and pleas for inclusion are love letters. These people were mad!

Anger. It is always good to remember when dealing with angry people that anger is not the primary emotion. Scratch the surface of anger and you get fear and hurt. Angry people seem to live by the saying “the best defense is a good offense”….and some of them can really get offensive! If I hurt you first, you won’t get the chance to hurt me; you understand.

The problem is some people don’t get to have even that thought. Getting angry takes you deep into the emotional brain. That section of your brain doesn’t think and it doesn’t reason. All it does is react.

I am not sure that is the face you want to present to people you want to work with in a bid to save your sight. More importantly, if that is the face you show, will they want to work with you?

In 7 Mistaken Assumptions Angry People Make, Marie Hartwell-Walker starts off by debunking the “she made me so mad!” myth. No one can make you mad. That you do yourself. When kids at school say that to me, I like to make a big show of admiring how powerful the other child is to have forced the first child to do something against his will.

Angry expressions are a sign of weakness not of strength. They are the lashing out of a frightened or hurt animal.

Although many people like to say they are not in control of anger, they most often are. Angry expression is a choice. It may be your only choice because you have never developed alternative strategies but it is still a choice.

Other options can be learned if you chose to do so.

The choice to become angry can be predicated on myths – a la DBT – that you tell yourself. Things like I cannot stand it or frustration is intolerable. Things like in order to have value I must be obeyed.

Hartwell-Walker has a couple of other points. I refer you to the original article. Here I just want to touch on some of the DBT concepts we have gone over for dealing with intense emotions. Remember emotions in and of themselves are neither good or bad. They are, indeed, necessary and the fuel that propels us. If you think of a car, emotions become the engine and wheels and your rational self is the steering wheel and the brake. Without the engine, there is no go. Without the steering wheel and brake, you careen out of control.

So emotions add the giddy up but you need to have someone in the driver’s seat first. You can help to assure there is someone manning the steering and the brake by purposely putting a second between your emotion and your reaction. You can sit with a negative emotion and just observe it and how it is affecting your body. Sort of like sitting Shiva in the Jewish tradition. Just you and your emotions trying to find peace in each other’s company.

Those are just two thoughts for ways of controlling negative emotions like anger. I, for one, would not want to bite the hands that may lead us out of this mess, or anyone else’s for that matter. Losing your sight is scary and painful but angry expression is not my answer.

Continue reading “The Driver’s Seat”

Life Is Like An Ice Cream Cone

Back to teaching Wednesday. We have a core group that has been with us for a while so I like to infuse a little extra information at times. Keep things fresher. I found something about dialectic thought but it is pretty dense. I am in need of thinning it out and writing a practice lesson….Yep. You got it. Thank you for ‘volunteering’ to be my guinea pigs! ::grin::

Dialectic thinking. Dialectics are not debate. While debate has as its goal victory for one party or another,  the purpose of a dialectic discussion is to find the truth. Dialectics looks for this truth in the arguments of the people who are presenting differing viewpoints. The reason for this is twofold. First of all, whether we realize it or not, even the most adamantly held position contains elements of and is defined by the opposite concept. You cannot say the room is cold without considering the concept of warmth. Also, the conflict allows us to be exposed to and become aware of the opposite concept, therefore opening the door to change.

How do you like them apples?!?!

Since these are supposed to be AMD pages, let me try to think of an AMD example. How about the standard one that goes something like this: when you were first diagnosed you may have thought your life was over. What is the purpose of life if I cannot see it? Your spouse may have poo pooed your concerns. We will be fine. Not much is going to change.

Now you could have had a debate. I suspect feeling the way you may have felt then you would have had a hard time believing things might be alright. However, by arguing about what a life worth living might be, you compared what you thought you would have to your ideal and realized some things would not change. Chocolate ice cream is still delicious even if you cannot see it so well! Your spouse compared his concept of a life worth living to the life you would be living and also modified his view. No, you would not be able to jump in the car and go for that ice cream cone whenever you wanted. The truth was not black and white. It was somewhere in the middle.

I found a good quote. Mary Parker Follett, who apparently writes about management said “we should never let ourselves be bullied by either-or.” Using my ice cream metaphor, you chocolate lovers may be dreading a plain vanilla existence. Your spouse may think chocolate will always be available to you but the truth may be a large twist cone. Definitely not either-or.

Now, if we start to see other possibilities in life, we start to question our shoulds and our routines. We may really look at what we are doing and become mindful (there is that word again) of what we are doing and how we are doing it.  Being aware of what we are doing gives us the option to change it. I want rainbow sprinkles on that twist cone! And that gives us the opportunity for spontaneity. Which is actually sort of a dialectic by the way.

So, there you go. Dialectic thinking redux. Make any sense?

Continue reading “Life Is Like An Ice Cream Cone”

Permission to Feel

Life is crazy and destined to get crazier. We have had a therapist leave the practice unexpectedly. Everyone is being asked to take up some of the slack. It seems as if every kid who is in the school is on my list to be seen. Today I got lunch at 3:30. I was ‘flying’ by the end of the day. I guess it is a good thing I start teaching emotional regulation soon!

Emotional regulation involves keeping your balance when everyone else is losing his. I have read emotional regulation is the ability to respond to the ongoing demands of experience within a range of emotions in a manner that is socially tolerable and sufficiently flexible to permit spontaneous reactions as well as the ability to delay spontaneous reactions as needed.

Whoa. That was a mouthful.

First of all, I stole that but I have no idea where I got it. If it belongs to you, let me know and I will give you credit.

Second of all, what the hey does it mean? We shall begin at the beginning…

  • …Ability to respond to the ongoing demands of experience… When something happens in life, can you do something about it? What is your reaction? We are ‘allowed’ to respond to what happens to us, good and bad.
  • …With the range of emotion. Emotional regulation does not mean we don’t feel. It does not mean there are emotions that are ‘bad’ and we are not supposed to feel. The full range of emotions is acceptable. We are also allowed to express all emotions as well as feel them.
  • …In a manner that is socially tolerable. In a nutshell there are ways to express emotion and ways not to do it. We are not going to do ourselves any good if we become so expressive we alienate people.
  • …Sufficiently flexible to permit spontaneous reactions. We are not so controlled we cannot react with spontaneity. Emotional regulation does not mean we are robots and have to follow a script.
  • …The ability to delay spontaneous reactions as needed. Let’s face it: there are appropriate and inappropriate times to express ourselves. It is not all about us and how we are feeling. Sometimes our moment comes later.

So what does this have to do with AMD? Many of you – like me – have had a pretty significant emotional reaction to your AMD diagnosis. We are ‘allowed’ to express the full range of emotions about that.

Don’t listen to those who say you should not feel what you are feeling. Don’t tell yourself it is wrong to have an emotion. All emotions are acceptable.

The amendment to that is your expression of emotion should not be so intense you act in socially unacceptable ways. Other people have their rights and this includes the right not to have to deal with someone who is crazy out of control. Like I said before, alienating people is counterproductive especially when you are looking for social support.

Lastly, we want to be able to respond to our emotions both positive and negative. However we do not want to be seen as drama queens always hogging the limelight. Other people have their needs. Some of them may be more urgent than ours.

So that is the thinking behind emotional regulation. To summarize: all emotions are acceptable. There are no wrong emotions. We are ‘allowed’ to experience emotions but should try to regulate their expression. Overburdening or abusing others with emotional expression – read freaking out, if you will – is not appropriate. It is also not helpful.

And that is my intro to emotional regulation. I start again in the classroom next week so I may add more…or not. ::grin::

Continue reading “Permission to Feel”

Patience, Not My Virtue

“People who think they know everything are a great annoyance to those of us who do.” – Isaac Azimov

Do you know those people who decide the ‘truth’ of a situation is what is convenient for them? Then they decide to operate on the basis of that ‘knowledge’ even though you have told them half a dozen times they are wrong? And THEN they are peeved because things did not turn out the way they thought they should? That was my day yesterday. The person who took me on my errands thought the world was going to operate his way and I knew that was not the case. It drove me CRAZY.

When I was fully sighted I did not have to worry about putting up with other people’s foibles as much as I do now. I would take myself and just know damn well what the rules were. (I check ahead of time.)

Now it is often all I can do not to be critical or say “I told you so!” when things go amiss. Let me tell you, patience is a virtue I somehow think I lack!

I touched on patience before, talking about waiting for the clinical trials to get going, but that is a little different. I can curse them out at the top of my lungs but they are over 100 miles away. it is not wise to curse your driver out when you are 25 miles from home!

I found a couple of articles on how to be patient on the web. Jane Bolton writing for Psychology Today (9/2/11) suggested we be kind to ourselves and understand it is normal to want our own way. We want things done right (read ‘my way’) because in the not so distant past, wrong decisions on even simple things could mean death. She also suggested we suck it up and understand we can tolerate more discomfort than we thought. Bolton said we can use ‘pain’ to find other solutions and to help us understand ourselves. For example, why is this action driving me so crazy???? Finally she suggested we stop the self talk about how intolerable it all is and what an idiot the person doing things ‘wrong’ is. No sense adding fuel to the fire.

Z. Hereford writing for Essential Life Skills suggested we slow down and, essentially, smell the roses. She made some suggestions that sounded very much like mindfulness skills. They sounded very similar to ‘moment to pause’ and ‘being in the moment’. Those are mentioned on other pages.

So, here I am, 24 or so hours later, and I – barely ::grin:: – survived, but survive I did. I will probably be driven crazy again but hopefully I will be able to tolerate it some better. I am, like you, a work in progress. Continue reading “Patience, Not My Virtue”

The A in AMD

I attended a seminar yesterday. This one actually gave us tables. Doesn’t sound like much but when you are balancing half a dozen things at one time, a table is a big thing.

That was six more credit hours. 12 down and 18 more to get in the next calendar year. Some of those can be home study.

A colleague gave me a web address for a company that sells continuing education training cheap. Since I was in student mode, I went on the site and downloaded several one credit hour courses.

(I said student mode, not martyr mode. Remember we AMD folks read more slowly now. If I can accomplish my goal – getting 30 continuing education hours – by ‘nibbling’ at them one hour at a time, I will. There is more than one way to skin a proverbial cat. There are no brownie points for doing things the hard way!)

Anyway, off track again but I thought it was a valid point. No one is going to ask how you got there, as long as you get there. Be kind to yourself.

Where I was REALLY going was to tell you I downloaded a presentation on depression in older people. [Lin/Linda: this was part of her course which is password protected so we don’t have access to it.] Now I know we are all 35 or less in our minds, but we also all know what the A in AMD stands for. This is not a condition for kids.

I actually read the article and answered the questions for my one hour of credit. The article said a lot of stuff we already know. Loss of sensory and physical functioning as well as personal/emotional loss and financial problems can all lead to depression. Been there? Done that? Got the t-shirt, huh?

It also gave some statistics I was not aware of.  Although the article (from Knowledge Informing Transformation) said depression is not a part of normal aging, it also said up to a quarter of seniors living in the community have depressive symptoms. Those numbers increase as living arrangement become more restrictive and as the people get older. In other words, if you think you are the only one suffering with depression, think again.

One of the big problems with depression is everything goes to hell right along with your mood. Depression in older people can lead to vague physical complaints, sleep disturbance, confusion, memory loss and agitation. Depression can lead to a significant reduction in the quality of life and even death. Health costs for depressed oldsters are twice those of non-depressed people of similar age.

So that is the bad news. The good news is it is possible to fight depression and win. 60 to 80% of older people see improvement with appropriate treatment.

In addition to finding a mental health profession you are comfortable with, I would just suggest you push back! Depression trying to take your positive attitude? Take it back through things like humor or altruism. Keeping you away from friends and support network? Call them! How about health and wellness? Make a date to walk with a friend. Cook a nourishing meal and actually eat it even if you have to choke it down. Fake it until you make it.

OK. Gotta get ready for bed. Remember good sleep is important too. G’night! Continue reading “The A in AMD”

The Holiday Blues

My assignment is to talk about depression, specifically the ‘holiday blues’. I am going to go in the back door on this one, so bear with me.

My 25th birthday was the worst birthday I have ever had. I had it in my head successful people had it all together by age 25. Successful 25 year olds have jobs, spouses, houses. I had none of these things. In my head, I was a failure.

Relevance? I would suspect every one of you who is down about the holidays like I was down about my birthday is operating under a whole slew of myths.

Myths in DBT parlance are stories we have come to believe simply because it seems they have always been there. We assume they are valid because they are part of us. They are the ways we think things are. Period. The end.

So what are you telling yourself about the holidays that is getting you so down? My first guess would be something to do with holidays and family, yes? The traditional meaning of family is a bunch of people related by blood. If you don’t have blood relatives surrounding you, you cannot have a holiday; right?

I don’t think so. I have no siblings and no children. I have no cousins on one side and I am estranged from cousins on the other. Some people would call that tragic. For me, forgive me if I offend, it has been liberating.

I have been able to build my ‘family’ with the people I want. I spend my time with people I enjoy. You don’t have to have blood relatives to have family.

Thanksgiving day I have a dinner engagement with a friend. (Hubby is having a tooth pulled the day before. Ouch.) Whom could you have time with? It does not have to be on the actual holiday. That is just an arbitrary date on the calendar.

This person does not even have to be an established friend. You could go to an activity you enjoy. The day after Thanksgiving the Y is having back-to-back classes. I will be there for two or three of those, along with my fitness ‘family’. We are looking forward to it. What could you plan that you can look forward to?

There are as many myths out there as there are people to entertain them. What are some of the myths you entertain? How about “I need to do everything I always have done for my family! It won’t be a holiday unless I prepare a four course meal!” or how about “we can’t  have a real holiday on a fixed income!”

CNN has an article about 4 things you can do about the holiday blues. They are pretty basic but they work:

Seek social support, exercise, don’t compare yourself to others, and reframe your thinking. There’s more about these in the CNN article.

Finally, I would not be a DBT instructor if I did not remind you of the distress tolerance skills. Refer back to ACCEPTS in the archives. It does work. Continue reading “The Holiday Blues”

I Vote for Tahiti

Greetings. Now that I have wandered around in prehistory for a while I guess I should get back on track. I did enjoy the wandering, though. I always liked anthropology. Too bad there are so few paying jobs in the field.

On track….Lin wanted me to talk about Seasonal Affective Disorder (SAD) and the holiday blues. SAD first.

SAD is an odd form of depression. As I said before, it probably has some deep roots in the species. It probably is endogenous (from the inside) rather than exogenous (happening as a result of something outside) in its causes.

Except for the season and/or the geography, you cannot point to something – an event – and say that is why you are depressed. No blaming SAD on your boss or your mother-in-law.

SAD occurs more often the farther you get from the equator. It happens more during the dark of winter. It is thought all that darkness messes with your biological clocks. They are still trying to figure out what actually goes on. However, the results of whatever it is include difficulty waking, decreased energy and lethargy, carbohydrate craving, weight gain, difficulty concentrating, decreased libido, withdrawal, depression, anxiety and irritability. Lovely.

Since SAD spontaneously goes away in the summer the thought became to either take the sufferer to the sun (I vote for Tahiti!?) or to bring the sun to her. Enter light therapy. (Apparently we can’t afford Tahiti. Dang.)

Light therapy works. It reduces depression, fatigue, sleepiness and all sorts of other things. Ready for the but? Light therapy is contraindicated for those with retinal disease. That is us. [Lin/Linda here: The problem with light therapy where you sit in front of a ‘light box’ with a bulb that simulates daylight is that it does contain blue light.  The topic of blue light & retina damage is controversial but why tempt fate? Click here for more information on this.]

Now what? Light therapy is pretty much out but there are other courses of action. Antidepressants have been found to be effective. However it normally takes several weeks for antidepressants to reach full effectiveness so you need to start taking them ahead of time. Psychotherapy has had successes. Ditto on the time lag for that, too.

Just to be on the safe side, if you are suffering from seasonal depression, or any depression, you should make sure everything else is in good working order. Thyroid problems can cause depression. Also low vitamin D is a culprit. Dr. Weil reported 70% of Americans are D deficient. Apparently nobody but me is drinking her milk!

Other sources such as Living Well With Low Vision suggest the judicious use of melatonin not only in supplement form but also by regulating its natural flow. Blocking blue light for several hours before bed moves the production of melatonin up in time so it is not still being produced and making you groggy and cranky in the morning.

I would think if you don’t have lenses that block the blue you could get similar results by nixing the screen and listening to BARD books in a dark room, but I have nothing to prove that hypothesis.

Then there are the really ‘radical’ depression fighters like getting up and taking a morning walk! Not only do you get the morning sun but somewhere I read 40% of all depressions respond to exercise. There are studies being done that suggest a rise in body temperature improves mood. I admit to being both a nature freak and an exercise nut, but my positions are being endorsed more and more by science.

That’s SAD. What is SAD? Depression. That’s SAD.

Next, the holiday blues, as requested. Continue reading “I Vote for Tahiti”

Highlight: Is depression following the diagnosis of AMD normal?

I found an article written for the American Macular Degeneration Foundation (macular.org) on depression written by a psychiatrist.  There are 2 parts to his article.   I thought that the second part was the most useful so I copied the text of it below.  If you’d like to read the first part as well as the second, click here.

Further Thoughts on Depression in People with Macular Degeneration

By Arnold Wyse, MD

Above, I discussed depression, including in people with macular degeneration, as a basic, normal, and potentially adaptive response whenever we perceive that a significant physical, psychological, or interpersonal effort of ours is failing in its purpose or coming to a halt.

This depressive response is accompanied by a set of typical physiological and emotional symptoms. Its adaptive function is to signal ourselves that there is an important problem that requires attention and resolution. Depression aids and protects concentration on the emotional and thinking readjustment that needs to be done to alter or cope with the situation or to recognize and accept a situation that cannot be changed. The potential result is renewal of one’s self-esteem and a greater capacity to move forward in life on the basis of new, even if deeply unwanted, realities.

I will now respond to some questions that your editors have asked regarding depression in general, and as it relates to people with macular degeneration.

Is it possible for depression to make our visual problems worse?

There is no evidence that depression can worsen the physiological and histological changes of macular degeneration. However, to the degree that depression temporarily narrows our attention, interest and involvement in the world around us, we might perceive a worsening in our visual acuity and sensitivity. An analogy would be the difference in brightness and color we experience in our surroundings when we are in a ‘bright’ mood versus the dull or gray appearance that even a beautiful day may have to one who is ‘blue’. However, this will be transient and when the ‘work of depression’ has been accomplished, there will be no permanent physical effects from this perceived worsening of vision.

How long will a person be depressed and is there any way of predicting this?

For the most part, depressive responses arising from unexpected traumatic circumstances such as macular degeneration are relatively short in duration, perhaps a few weeks to a few months. The only way I know of predicting just how brief or long any particular individual is likely to experience depression is to look at his/her previous record in coping with the stresses of life.

Speaking generally, people who have enjoyed a previous high level of self-esteem, emotional resilience in the face of adversity, high levels of support from, and contact with, family and friends, etc., will show a quicker rebound from the initial devastating impact of their visual impairment. Those who, for whatever reason, have been more depression prone in the past and who are more dependent on everything in their life being ‘ideal’ for their sense of their own self-worth and stability may take a longer time to hear and respond to the growth-demands inherent in their depression. Although we all feel good vision as very important to our lives, the degree to which visual acuity is central to one’s career or hobbies can also affect the amount of personal threat one feels when faced with its complete or partial loss. It is important to remember that, for most people most of the time, depression is a time-limited experience with spontaneous recovery the rule.

Is there anything you can advise a person to do, or take, that may alleviate their depression?

Most of us are not especially open to advice when we are in the depths of depression or despair. Usually we simply have to go through a healing process either alone, with the help of friends and family, or with the help of a therapist. However, there are some suggestions that can be made that might be helpful for some. Acknowledge and accept the depressive feelings as real, true, natural, and as a signal of some personal adjustment and healing which needs to take place. Avoid the trap of thinking that your current emotional suffering, anger, and disinterest in life is a sign of personal weakness, badness or failure. Accept it as a sign that the former path in life you were on may no longer go anywhere for you and a somewhat new path must be found. Find a trusted friend or family member with whom to share your feelings about your loss and ask them primarily just to listen and care, not to give you lots of advice or try to push you to feel better until you have gone through your own process of acceptance and adjustment. Don’t be quick to pop every little pill or potion in your mouth that others say was a miracle cure for them! Keep up as many of your daily routines as possible and take good care of your body and spirit through daily exercise to the degree that you can feel motivated to do so.

Are there any over-the-counter vitamins or drugs that a person with depression could take that might help? Or would they need a prescription?

In general, look not for help and healing through the oral and digestive system, but through the psychological/interpersonal system. Your ‘soul’ has been wounded by loss in a personal sensory function that had tremendous value to your sense of your self and your contact with life. Such ‘soul wound’ heals with a combination of time, painful acceptance of what has happened, healing contact with people who care and try to understand, and gradual investment of time and energy in what can still be for you, rather than what can no longer be. This is an internal psychological process, not an oral or chemical process.

However, the process can be supported through continuing good nutrition (including vitamin supplements if one’s loss of appetite diminishes good nutrition), regular physical exercise, and sometimes even prescription anti-depressant medications. The latter, prescribed by a psychiatrist or your family physician, can for some people assist in re-establishing the balance and function of neurochemicals in the brain that have functioned less effectively as a result of prolonged emotional/psychological depression. They will not, however, be needed for most people dealing with depression in response to a life stress or trauma and should be seen as adjunctive (added to), rather than central, to the healing of the ‘soul wound’.

What can family and friends do to help alleviate the depression?

Like the victim of macular degeneration themselves, family and friends can help most by not being alarmed at the initial depressive response but to recognize that this response creates, by its various reactions, a frame of mind and a physical state promoting the work of re-adaptation and regrouping. A caring and understanding ear should be offered rather than impatience at the individuals temporary withdrawal, loss of appetite and sleep, sadness and anger.

Working creatively together with the victim of macular degeneration to find treatment where indicated, and to find ways to support what vision the individual has as well as to compensate for what is lost will be helpful. The victim’s need for maximum independence in the face of greater dependence in certain ways should be recognized and supported.

If the depression remains deep and unproductive for weeks on end or includes unrelenting suicidal thoughts, wishes, or behavior, a friend or family member should firmly press for professional help for the depressed person.

At what point should the AMD patient seek professional help?

In most cases this won’t be necessary as the potential for ‘recovery’ is present in everyone, especially where solid interpersonal relationships exist prior to the onset of the macular degeneration. However, sometimes the traumatic situation and resulting depression or anxiety, including preoccupation with death and suicide, becomes so overwhelming and protracted that professional help is indicated. To seek such help when the frame of mind and physical reactions of depression have not spontaneously remitted is a sign of strength, not weakness.

Often, the very decision to get professional help or the first meeting with a professional expert who is experienced in helping people work through their loss and regain their interest and enthusiasm for life will already lead to relief from the worst feelings of hopelessness and despair. Generally speaking, it is better to be sooner rather than later in obtaining professional help as it becomes harder for most people to seek such help when their depression becomes severe and unproductive to the point of feelings of hopelessness and despair about future possibilities for meaning and happiness.

What professional options are available to the patient? What are some benefits and drawbacks to each option?

If one has an ophthalmologist or family physician who is sensitive to the emotional experiences the patient is likely to go through who has just been diagnosed with macular degeneration, that physician can help a great deal by spending time listening about and discussing those typical emotional responses. Frequently, that is all the professional help that is needed. In addition, an ophthalmologist or family doctor who is experienced and judicious in the use of anti-depressant medications may prescribe them when indicated.

If more intensive psychotherapy is indicated however, the patient should seek the assistance of a clinical social worker, psychologist, or psychiatrist who is trained and experienced in the special skills that good listening/interactive psychotherapy requires.

The current managed health care environment makes obtaining such psychotherapy over an extended time much less available to the average person, especially if done with a psychiatrist, but just pills or a session or two of advice will often be insufficient to help the person regain optimal psychological growth and health from their traumatic loss. A psychiatrist who is trained and experienced in psychotherapy offers the added benefit of being an expert on psycho-pharmacology, but many other mental health professionals are also highly skilled in offering individual, group, or family therapy. In some locations, the patient may also find excellent self-help groups led by either a professional or a skilled lay person who him/herself has experienced macular degeneration.

Are there any good books or articles on depression that one might read?

Although depression is such a natural, common and universal response to unresolved loss or stress, it is also very unique in some respects for each individual because each person is unique. Therefore, I am not fond of recommending reading in the field for the person currently suffering the loss of traumas such as macular degeneration. The path of recovery will come, not from books and articles, but from one’s own inner process, relationship with significant others, and, where indicated, a caring and skilled professional. For readers of this article who are interested in reading an excellent book written for professionals and educated laypersons, I would suggest Productive and Unproductive Depression, Success or Failure of a Vital Process by Emmy Gut, Basic Books, Inc., New York.

Brief Biographical Sketch

Dr Arnold Wyse, a native of Michigan, is a board-certified psychiatrist and psychoanalyst who received his specialty training at The Institute of Living in Hartford, Connecticut, and at New York Medical College in New York City. After twenty years in private practice in Hartford and as Associate Clinical Professor at both the University of Connecticut School of Medicine and New York Medical College, Arnie joined the Indian Health Service. From 1992 until 2000, Dr Wyse served as Director of Mental Health Services and Medical Director at Northern Navajo Medical Center in Shiprock, New Mexico.


If you’d like to read his first article, click here.