One Foot in Front of the Other

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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“I Don’t Want to Go There!”

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

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

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

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

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

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

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

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

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

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

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

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Mi Depression, Su Depression

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

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

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

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

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

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

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

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

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

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The Art of Asking

Today was a sad day at school. The teacher who had been battling cancer for the last two plus years passed away.

I have been teaching DBT long enough now, the DBT-ish thoughts come unbidden. First though is about meaning in pain. Some people wonder how you can have meaning in a life full of pain.

The answer according to Viktor Frankl and others is this: the meaning in a life full of pain can be in the way you endure. Fortitude? Grace? Style? Call it what you will. This woman did it with class.

The other thing I thought about was the comparison skill. The mother of young children diagnosed with terminal cancer? She could have handled this low vision thing with one hand tied behind her back! What am I complaining about? I’m lucky!

And another reason I am lucky? Back to I have people and my people are great. Since my ride home and this woman were friends, she went home early. Before I even knew I was down one ride home, the secretary had called my backup ride for me and I was back in business. Love you guys!

Taking me to what Lin wants me to address: asking for help. She informs me a lot of you folks are not loud, forward pains like I am. I am supposed to talk about how it is done…and not like a loud, forward pain, either.

Remember do as I say, not as I do? We are going to go over asking nicely.😇

Lin sent an article by a woman who asks for things for a living. She collects money for charity. I am going to use her Art of Asking as a loose guide.

Know what you want and why you are asking

The author suggests you know what you want and why you are asking. Essentially it should be important to you and other people should be able to see that. Frivolous doesn’t cut it. If it doesn’t matter to you, why bother people?

Ask for things from people who share your interests

I ask for things from people who share my interests. Not only do they ‘get’ I will go nutz if I don’t get to yoga, they are often “going my way”. (Bing Crosby, 1944, and available for free on YouTube!)

Ask directly for what you want and be specific about the expected cost & effort to the person

The author also suggested asking directly for what you want and being specific about the expected cost and effort to the other person. Don’t drag people out of their way and be understanding and flexible about their needs if they take you out of your way. With my ride home from school I have gone to pick out a train set, to the garage and to the chiropractor. Since she needed to go, I went along. She was doing me a favor, not the other way around.

As I said before, my school ride home lives ¾ of a mile away. My backup ride is about 1-¼ miles away. If I know someone lives on the other side of town, I refrain from asking except in an emergency.

Social media can help by asking a small group of people

I am not on social media, but social media has helped in getting my needs met. It has already happened that a usual ride had to back out but ‘advertised’ successfully for a sub. Asking in a small group can get people talking and generating solutions. Sometimes a total stranger will step in to help (just make sure SOMEBODY can vouch for him or her).

Give alternatives

The author suggests giving alternatives. There is more than one way to solve any problem and personally I have found people are more receptive to helping if they see you making the effort too. When I go to my third job, transportation will take me half way. Rather than run someone all the way to pick me up, I make arrangements to get to the halfway point on my own.

Don’t be afraid to get told no

And the most important thing of all? Don’t be afraid to get told no. The author points out not asking guarantees a no. I want to point out graciously accepting a no does not burn bridges or make people feel uncomfortable about being a ‘bad’ person. Most excuses are not excuses at all; they are reasons. Recognizing other people have obligations and needs can only be a positive in the long term.

End of tutorial.

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Improving Communication: Part 1

TGIF! Greetings from the land of organized chaos, aka my life!

I have not been writing as regularly as I would like. For one thing, as I keep pointing out, there are lulls in the action with AMD. You adapt to a certain level of loss and things are calm until the next loss of vision occurs.

Crank up the magnification and soldier on until the yet next disaster. Lulls are not all that page worthy…and I don’t need a disaster right now.

The other reason is my days have been flying! I am taking more counseling clients and my days are jam packed. Nothing like being busy to make the time fly!

All of this by way of saying, I am sliding into a holiday weekend (Happy Memorial Day!) and I am going to try to pound out a few pages over the next few days.

We stopped for deep dish pizza on the way home. (The new comfort food!) I walked the Beastie Baby in the neighborhood and the field. She drank from every rain puddle (mud flavor! Yum!) and we investigated what looked to me like bear scat (poop, no bear. Life is good). Well fortified and with the ‘adventure’ out of the way, I guess I am ready to go.

The topic was suggested by one of our readers. She is located in Massachusetts and has just helped to launch a new, vision loss support group. (Kudos!) The topic had come up in her support group: vision loss and social isolation.

The short answer is “yep”. Problem is, I rather doubt I can make a page out of that. In trying to flesh things out a bit, I came upon a publication by the Thomas Pocklington Trust. Published in 2013, this literature review contained 44 pages on the topic. Good resource. [Lin/Linda: it’s 44 pages if you download the Word version; 8 pages for the PDF version which is what I’ve linked to.]

The review starts by pointing out loneliness is not part of natural aging. Loneliness and social isolation are also not inevitable for the elderly, visually impaired population. (So maybe “yep” is not the short answer?)

That said, however, it is easy to see how vision loss, loss of function and depression can lead to social isolation and how social isolation can loop back around and cause more depression, etc. People with vision loss can really end up in a nasty downward spiral.

The review acknowledges the problems that can come from not recognizing faces and facial expressions. Without nonverbal cues to go by, communications can easily breakdown.

Lack of good social communication can break down social relations and lead to a drop in feelings of self-efficacy. Feeling you are not able to adapt and cope with your loss once again leads to all sorts of issues and perpetuates the downhill slide.

I think I mentioned before that feelings of self-efficacy are exceptionally important to mental health. The “I can do it myself” attitude can be reinforced by success in using assistive devices. In another page I believe I quoted something that said one of the best predictors of life satisfaction is access and use of assistive technology, both high and low tech.

OK. To be continued. Since some of us have trouble reading long text, I will stop here for now.

Continue reading “Improving Communication: Part 1”

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Attitude Adjustment

Alrightee then. End of feeling sorry for myself…for now. When the horse throws you off, you get back on and all that. It is attitude adjustment time.

Counting my ‘positive pennies’ the first half of today has been good. I tried my gown on this morning and it fit. That is a positive. I picked it up for $25 two years ago at the thrift store. It is actually a pretty gown for $25. This evening my gown and I go to the Mom Prom.

My husband dropped me off on the other side of those two, scary main roads and I rode my bike the rest of the way in to Zumba at the Y. Then I rode into town, chained my bike at the library and went to the street fair.

Since my class was putting on a demonstration, I participated. Participation is often a good thing. Afterwards I wandered around, ate fresh-cut fries and a chocolate brownie (we have discussed my dietary shortcomings; haven’t we?) Also ran into several people I know.

Back on the bike for the ride home. Coming home I passed a whole hedge of lilac bushes. I could have stood there all day and taken in the fragrance.

All told not at all bad start to my day. I may have age-related macular degeneration and central vision loss but I can still savor chocolate brownies and smell the lilacs. Oh, and they had this great group that does Chicago and Al Jarreau and all sort of music from our youth (assuming you are also on the upward side of 60!) The lead singer is excellent. I enjoyed their performance.

Attitude adjustment. Just like the three most important things in real estate are location, location, location, it appears the three most important things in keeping yourself mentally healthy with AMD are attitude, attitude, attitude.

I found a 2005 study by Jennifer Tolman et al. The study was on psychosocial adaptation to vision loss. Also on adaptation’s relationship to depression. Tolman and her people discovered it really is basically a matter of acceptance and compensation for vision loss. It is the internal experience that really counts. You know: if you believe you can’t, you can’t. If you believe you won’t, you won’t. Ya gotta believe in the possibilities in your life.

Tolman published the Adaptation to Vision Loss Scale (AVL) in her article. It consists of about 24 yes/no questions. Many of them have to do with self and personal power. It is interesting to look through. If you take it and find yourself answering as if you are powerless and/or have lost yourself, you might want to consider getting some help. Depression is a possibility.

Another thing she found related to depression was making use of services and adaptive technology, etc. I see that as a chicken and the egg sort of thing. Services make you less depressed but you have to have the motivation to go look first.

So that is pretty much it. We all have our setbacks. We just cannot wallow too long. Sometimes it is time for an attitude adjustment.

written April 29th, 2017

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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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