Meaning and Purpose

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

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

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

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

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

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

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

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

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

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

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

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Keep On Keeping On

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

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

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

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

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

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

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

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

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

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

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

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

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The More I Like My Dog

“The more I learn about people, the more I like my dog.” – Mark Twain

“When things go wrong, don’t go with them. ” Elvis Presley

I am still kvetching. I got the new washer. Then I had to replace a well pump at my first rental. I cannot complain about the longevity of the pump (just the price!), but the washer?

What happened to the days that major appliances lasted more than five years? What happened to pride in what you produce?

Thursday morning I was arguing with my second rental tenant via text. “Yes, you owe me at least four month’s rent. I need a check!” Twenty minutes later I get a phone call from a woman asking me to give him a credit reference! Amazing. Reality check. Why would you list someone you owe money to as a credit reference?

This morning I was rushing out to the van. I threw my iPad Mini into my rolling crate. Later when I looked for it at the office, it was nowhere to be found. I am sick about this. There were photos and a lot of apps on that machine. The dispatcher at the transportation company could not have cared less. Would it have killed him to FAKE some sympathy? What happened to customer service?

As much as I generally love and praise people, there are some times I dislike them quite a bit. Quite a bit. Have a series of less than happy encounters and you can be rolling downhill on a slippery slope.

I have talked about the DBT concept of turning the mind a little bit but not in-depth. Turning the mind is a distress tolerance skill. It involves making the conscious choice to turn towards acceptance of a bad situation (acceptance being the first step towards change) or simply to turn towards positive functioning. A 2006 study found that approximately 40% of happiness may be determined by intentionally engaging in positive thoughts and activities. A statistic like that makes taking the happy path look pretty appealing. Even when you are not feeling it.

Realizing I was in a foul mood – and there being fresh snow! This weather is so flippin’ weird – I put on my cross-country skis and tried to ski. Very wet snow so I was sticking badly. A couple of times I had ‘platform skis’ with three inches of snow stuck to the bottom! Back to the house for the silicon spray and a second attempt.

This is another aspect of turning the mind: it doesn’t just happen once. Every time you come to a decision point, somewhere you could spiral down or turn towards acceptance and the more positive adjustment, you have to choose all over again. Again and again and again. Health is a choice we have to keep making over and over again.

So I accepted the snow was very wet and I needed silicon spray. Lots of spray and a few passes along the same path and I was doing my version of zipping along. No spray and no trail breaking? That would be not accepting reality and no zipping along. Zippy is good. Trying to move on ‘platform skis’ is not.

My tablet? I haven’t totally given up. I am going to talk to the drivers but I ordered a new one. The reality is mine is nowhere to be found. Not accepting that means no apps that I need to help me out. Accepting it may be gone allows me to try to solve the problem.

People? Oh, might as well accept it. Lots of them are idiots. Didn’t you know? ?

P.S. You can set up your iPad so it can send you an SOS when it is lost or stolen. It is in the systems menu. I will do that with the new one!  [Lin/Linda here: you do have to set this up BEFORE you loose your iPhone or iPad.  Click here for those instructions and also how to use the Find My iPhone app.  You can do something similar with Android devices, click here for more information.] Continue reading “The More I Like My Dog”

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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!”

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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”

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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”

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How Am I Supposed to Get Home?

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

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

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

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

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

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

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

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

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

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

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

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

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

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