“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.

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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.

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Murphy’s Law

I suspect Lin is going to scream at me about that last page. [Lin here: for the record, I don’t scream.] No, my friends, or for that matter, my enemies are not going to let me starve. No, they don’t really mind if I tap them for help once or twice a week. (Once again, thank God I know a lot of good people.) It is pretty much in my own head. Yes, I am preparing and trying to maintain some good independence. Yes, I am also catastrophizing.

I am what? Is that a word, even? It is in psychology. Catastrophizing is having irrational thoughts about things.

The thoughts say things are worse, much worse, than they actually are! They say situations are hopeless and we are doomed. Doomed, I say! Doomed!!!!

According to Psych Central there are two kinds of catastrophizing. One is in the present tense and one is in the future. In other words, my situation is horrible and it can only get worse. Uplifting, don’t ya think?

Now just because “I is a psychologist. I is” I am not immune to this nonsense. I just recognize it a little faster than most. Everyone is susceptible to catastrophizing. Hell, look at Murphy. He got famous with a law that is catastrophizing at its finest: “whatever can go wrong will.” There are also a couple of dozen corollaries to the law. Check out the Murphy’s Law website if you want to have fun with them.

People identify with the thought Murphy put forward. Catastrophizing is common practice.  However, the problem is that catastrophizing is not a positive thing. It is sort of the evil twin of cope ahead. Cope ahead helps us to imagine doing things right so that we can actually do them properly. Catastrophizing has us imagining things going wrong. Guess what happens when you practice things going wrong?  Yep. You got it.

Expecting and practicing a bad outcome generally leads to a bad outcome.

Getting rid of catastrophizing starts with our old friends awareness and acceptance.  Just being aware and recognizing what you are doing helps you change your thought patterns. Become aware of your thinking patterns. Are you using a lot of negative words in your thoughts? You know, words like awful, disaster, terrible, debacle, etc. Being aware will have you on the lookout for them when they crop up. Accepting you are using them opens the door to doing something to change your thoughts. Better to practice cope ahead and see yourself as successful. You can also refute your negative thoughts. “That’s not true! It is not true because…”

So, OK, I am not going to starve. I have access to a variety of food sources. People have been transporting me for weeks. Why would they suddenly stop? Everything may work itself out. Maybe Murphy was wrong.

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A Tutu and A Tiara

I would like to go back a day or so in time but continue on the topic of DBT Emotional Regulation Skills. Needless to say, finding out my AMD had progressed that quickly and I would have to redefine myself as a visually impaired person was not fun. It was downright depressing and we have already addressed the lovely panic attacks that have been – and actually continue to be – enveloping me at odd moments. Saying that I was in a state would be an understatement. My husband said that I cried more than I had cried in all the previous 25 years of our marriage. So, in that state, why in the name of heaven am I wearing a blue tulle tutu and a paper tiara? The answer is: it was Marcy’s birthday. We had been planning a party in Zumba class.

I had cried more than I had cried in all the previous 25 years of our marriage.

Could I have stayed home and cried? Of course.  Part of me wanted to and no one would have faulted me. I had drawn the bad card and it was understandable if I had crawled into my shell for a while, even a long while.  The problem was that it was Marcy’s birthday and I had a tutu and tiara waiting for me. I was supposed to be in my usual place dancing.  The problem also was that I had to do something to challenge my mood or I would have been a long time crawling out of my hole.

It was Marcy’s birthday and I had a tutu and tiara waiting for me.

DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior. Not a new concept, Ignatius Loyola said something about performing the acts of faith and faith will follow. In other words: fake it until you make it.

Opposite to Emotion boils down to fake it until you make it.

So, for one hour, I acted as if all was right in my world. I dressed up. I danced. I laughed. And for that hour I felt better.

Please note I said for that one hour. It is all right that it did not last forever. It is all right if I went back to being distressed. For that one hour I was improving my mood and fighting the downward spiral that could have led to more problems, such as a serious depression. Maybe I could do it another hour another time.  Behavior follows emotions but emotions also follow behavior. Fake it until you make it. Put on your tutu and your tiara and dance.

Put on your tutu and your tiara and dance.

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