Pecked to Death by Ducks

As I posted a few pages ago, I am back to work a few days a week. I had naively hoped that everything would be good and everyone would be in my corner. Note the word ‘naively’.

I am not the me who was doing this job several weeks ago. Remember the woman who was able to see what she was doing? I have made some dumb mistakes I never would have made if I were still totally sighted. It’s damnably frustrating, not to mention embarrassing. While I have a steep learning curve and have vowed not to make those particular mistakes again, I anticipate I will be making other mistakes and facing other challenges.

I have made some dumb mistakes that are frustrating and embarrassing.

Locally, people are great. My coworkers are supportive. My bosses are good. Just a little scared they may have taken back someone who will not be able to do her job. News flash: there are times I am afraid of exactly the same thing. My Blindness and Visual Services (BVS) and low vision people rock. I have all sorts of cool toys to help me. For a government agency, BVS is moving at the speed of light to get me set up with what I need. No complaints locally.

Local people and services are great!

I have contacted two large publishing houses about my need for some things in digital format. You can enlarge things when they are on your tablet, don’t you know. What I thought was going to be a simple “Hey, help me out here” seems like it is turning into a corporate run-around. They keep suggesting I purchase digital versions of materials that are, in some cases, not even on the market yet. And what, pray tell, am I supposed to do about serving my clients in the meantime? Good customer here! Cut me a break.

I’m a good customer of 2 large publishing houses and yet they want me to purchase digital materials that they should be happy to supply me with for free.

But screaming about – and at – people who don’t get a good deed is not only good for the soul but also good for business and that is probably the topic for another post. Right now I want to go back to DBT and talk about how I can get through the frustration without blowing a fuse.

DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.

DBT has skills that will help me deal with frustration without blowing a fuse.

I is for imagery. Imagine yourself someplace calm and peaceful. Take your mind on vacation somewhere you felt wonderful. Go back to that safe place where nothing ever hurt you. These places do not have to be real anywhere but in your head. My favorite place got washed away in a flood in 2004. Just the same it still exists in my head. I can go back to the ol’ swimmin’ hole any time I want as long as it is in my mind.

Imagine yourself someplace calm and peaceful even if it is not anywhere real.

M is for meaning. Viktor Frankl was a German Jew. During his time in several of the Nazi death camps, Frankl, a neurologist and a psychiatrist, spent his time ministering to his fellow prisoners. He had a purpose and a meaning to his life. Frankl also discovered the prisoners who did the best and were able to survive the camps were those who had a purpose and saw their lives as having meaning. Frankl said that people who have a ‘why’ can survive any ‘how’.

Perhaps there is meaning to your life, meaning to what is happening to you. A meaning I put to my life, my disease, is believing I will get into the clinical trials and help to find a cure for AMD. What is your purpose? Find your ‘why’ and you will more easily endure the ‘how’.

I have found a purpose to my life with the disease…what is yours?

P is for prayer. Some of you have a strong faith and some do not. It has been said there are no atheists in a fox hole. Therefore I will assume that, no matter what your religious beliefs, many of you pray.

The Serenity Prayer is nice. So is the 21st Psalm if you are of a Judeo-Christian faith or even if you are not. The Prayer of St. Francis is also good (“Lord, make me an instrument of thy peace…”). You can make one up. It is up to you.

Prayers are basically of three forms: “HELP!”, “thanks” and “nice job”. When I am in troubled times, such as now, I use the “HELP!” type of prayer a lot. However, “thanks” and “nice job” prayers are good because they remind you of what all is going right. Thanks and praise allow us to realize we have accumulated many positives. They have just been forgotten in the face of a crisis. Remember Accumulating Positives is an Emotional Regulation Skill.

There are wonderful prayers out there. You can even make one up.

R is for relaxation. Relaxation can be anything from a massage to a hot bath to meditation or any one of hundreds of other things. What relaxes you? Indulge. Just make sure it is not a habit that will eventually be hurtful to you.

What relaxes you?

O is for one thing at a time. I adopted an expression many years ago, not even sure where I first heard it, but the expression is ‘being pecked to death by ducks’. What it means is you are being assaulted by a dozen little things at one time and you feel as if you are succumbing to the cumulative effect of the onslaught.

Some days we are just being ‘pecked to death by ducks’. We spin from peck to peck and never actually deal with any one of them. DBT says to deal with one of those unfriendly fowl at a time. You cannot fight a war on too many fronts. Decide where to put your resources and win that battle first. Then go on to the next battle.

What do you do when you are being ‘pecked to death by ducks’?

V is for vacation. Vacation, unfortunately, does not always involve flying to some sun-drenched beach in the tropics. In DBT terms a vacation can be as simple as drawing a hot bath and locking the bathroom door. Hang a sign: “I am not available to deal with any crises for the next 20 minutes. Please check back later.” Remember, as much as we wish it would be, DBT vacations are not running away to Bora Bora and making a living beach combing. They are short and assume we will get back to dealing with things within a minimum of 24 hours or so.

Finally, the E is for encouragement. Get out those pom poms and cheer your favorite player – yourself. Be the Little Engine That Could. Celebrate your progress. Remember it is important to acknowledge how far you have come. Praise yourself for still being in the fight. Be in your own corner.

Be the Little Engine That Could.

Those, quickly, are the IMPROVE skills from DBT. They are used when there is nothing else you are able to do that moment to solve the problem. You use them when either circumstances are not right or you don’t have the energy to deal for another minute or when you are overwhelmed with the chaos. I hope you find them helpful.

Written March 2016. Reviewed September 2018. Continue reading “Pecked to Death by Ducks”

How to Win Friends & Influence People the DBT Way

In a recent post, I talked about using skills to get what we want and need without damaging our relationships with others. In DBT speak they are called Interpersonal Effectiveness Skills.

If you are anything like me, you were used to being independent. If no one did it for me, I did it for myself. Now I find myself in the position of asking for favors, asking for help. It is aggravating and depressing; yes? Yes! DBT has skills for getting what you want without alienating people and, just as importantly, saving your self-respect. None of us like to grovel or beg. Too old for that nonsense.

It’s time to learn skills to get us what we want without alienating people.

The acronym is DEARMAN. DBT has a lot of acronyms.

D is for describe. You describe the situation in nonjudgmental terms. Be objective. Good: “I have a visual impairment and I cannot read the menu board.” Not good: “How do you expect anyone to read that board? The print is too tiny!”

Describe the situation in nonjudgmental terms.

E is express feelings or opinions about the situation. Remember not to be judgmental. Good: “I really hate to inconvenience you…” Not good: “This place has no consideration for older people!”

Express feelings or opinions about the situation in nonjudgmental terms.

A is for assert wishes in a clear, concise and assertive manner. Good: “Could you please read today’s specials to me?” Not good: “Read me that damn special right now!” Remember assertiveness and aggression are not the same things.

Assert wishes in a clear, concise and assertive manner.

R is for reinforce your request, and more importantly, their compliance. Good: “Thank you so much. I really appreciate the help.” Not good: “Well, amazing! You can read.”

Reinforce your request and their compliance.

M is for mindfulness. Stay focused. Don’t get sidetracked. Good: “I would be happy to let you seat me after I know the special.” Not good: “Seat me next to the window. Get me a coffee….WHAT is the special???? I don’t like THAT!”

Stay focused, don’t get sidetracked.

A is for appearing confident. Believe you will get what you are asking for. Convey that you deserve respect. Good: use a strong voice. Not good: Mutter, stammer.

Appear confident.

N is for negotiate. In order to get, you have to be ready to give. Good: “Do you have a comment box at this restaurant? I always like to let management know when I get good service.” Not good: “Do it. It is your job to wait on me!”

Negotiate and remember that in order to get you have to be ready to give.

DBT also promotes persistence. That is calm, goal-directed persistence. It is called the broken record technique. “I would like you to read the special to me…please read the special to me…could you read the special to me….what is the special?”

Be persistent but calm.

I found a quote a while back: “Rudeness is the weak man’s imitation of strength.” -Eric Hoffer. Remember that. Remember it not only when you are frustrated and want to be rude but when someone is rude to you. There are days that this vision loss gets to you big time. There are days you run into seemingly every idiot in the world. Mark Twain said: “Never argue with a fool. Onlookers may not be able to tell the difference.” Don’t engage with people who are rude or simply trying to get your goat (and exactly where did THAT expression come from?). Not engaging is a show of strength. Engaging gives the idiots power. There are ways of asking for help, getting it and still maintain self-respect. DBT calls them Interpersonal Effectiveness.

Don’t engage with people who are rude, engaging gives the idiots power.

Written March 2016. Reviewed September 2018.

Continue reading “How to Win Friends & Influence People the DBT Way”

Attention Walmart Shoppers

I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.

The first new thing I did was go into Walmart – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!

Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.

First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.

I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.

Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.

clipons — These are my clip-on magnifiers. They look very much alike but the one on the left side is for looking at things close (called near point) & the other is for looking at things farther away (far point).

Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.

Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.

OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?

At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.” What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?

So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.

I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything. Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.

I used my far point magnifiers in the parking lot and did not run into anything.

I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.

Written March 2016. Reviewed September 2018.

Continue reading “Attention Walmart Shoppers”

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight. Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy. We are not medical people. Please read the disclaimer.

This website is divided into 4 parts:

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email. On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column. On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos. We couldn’t have done it without you.

Advice from Scarlett

OK. Right now I have three choices. I could scrub the tub, keep working on the taxes – using the handy dandy CCTV that was loaned to me; I might add – or I can write another post. Sounds like a ‘no-brainer’ to me!

I mentioned a couple of times that I am a group instructor for Dialectic Behavior Therapy (DBT). I mentioned Distress Tolerance Skills that make up the acronym ACCEPTS. So far I have talked about two of those: activities and comparison (AC of ACCEPTS).

Activities are one of my favorite strategies. I like to keep busy. I have already – only partially tongue in cheek – picked out the inscription for my tombstone. What is it, you ask? “I wasn’t done yet!”

On my tombstone: “I wasn’t done yet!”

Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.

Contribute means doing for others and that’s what this website is for me.

OOOPS. Make that three ACCEPTS strategies I have touched upon. Mea culpa (Latin for “my bad”, a phrase I dislike). We talked a little about opposite-to emotion also. Behavior follows emotion but emotion also follows behavior; remember? If you have an emotion you want to get rid of, do a behavior that you would do if feeling the opposite emotion. In other words, if you are sad, dance. If you are fearful, approach.

Behavior follows emotion but emotion follows behavior.

I like to call pushing away the Scarlett O’Hara skill. Do you remember Gone with the Wind? The crops are burning, the slaves are running away and the Yankees are at the door. Prissy comes to Scarlett with one more problem and what is Scarlett’s reply? “I’ll think about that tomorrow.” Note, she did not say she would never handle the problem. She did not say she was going to ignore the problem. She said she would deal with it tomorrow. That is pushing away. Just put it on the shelf until you can deal with it effectively.

It’s OK sometimes to be like Scarlett O’Hara: “I’ll think about that tomorrow.”

Thoughts are distractions that take the whole mind. Work on a puzzle. Learn a new skill. Get into a fast-moving tennis match. Climb on a high ropes course (being 30 feet off the ground and suspended only by a cable does tend to focus one!). The idea is to need to be so mindful of what you are doing there is no room for worry.

I am not crazy about the S in ACCEPTS, sensations, simply because I am not a big one for pain. Not that the sensation has to be pain, just intense. The idea is akin to something like this: you forget you have a killer migraine because you just bloodied your toe kicking the curb. The throbbing of your foot makes you forget your head. Some people suggest a freezing cold shower or holding ice cubes for the sensation. Whatever you do, it has to be intense enough to move your attention away from the distress. Sort of a shock to the system as it were.

So those are the ACCEPTS skills. They are primarily distraction skills for dealing with a situation that cannot be changed….such as this pesky vision loss thing. I hope they are helpful for you. Use them in good health.

The ACCEPTS skills are primarily distraction skills for dealing with a situation that cannot be changed.

Written in March 2016. Reviewed September 2018.

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Crazy Like a Fox

The day comes for me to go to my second appointment with Regillo. I ‘dress for success’ for these appointments. Some people may think putting on a professional-looking skirt and pantyhose and doing my makeup for a doctor’s appointment is a little crazy, but I think of myself as being crazy like a fox.

I ‘dress for success’ for the appointment with Regillo. Some say I’m crazy but I think of myself as crazy like a fox.

I can be a manipulative little thing when I want to be. People think of manipulation as a bad thing. It has gotten a bad name because people think that manipulation is always for the agent’s own gain and always hurts the person who he (or she) is trying to manipulate. That is far from the truth. There is something called ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Every one of us is manipulative. Some of us do it with finesse and some are heavy-handed. It is simply a matter of style…and training.

DBT Interpersonal Effectiveness Skills teach us that as long as you are not hurting others, not being dishonest, etc, using finesse and certain strategies is perfectly acceptable to try to get what you want. The goal of interpersonal effective is getting someone to do something for you and that person feeling good about having done it. Win-win. And yes, it is positive – gasp – manipulation.

As long as you are not being dishonest or hurting the other person, manipulation is a perfectly acceptable skill according to DBT.

Another reason I dress up is related – sort of – to the IMPROVE (another acronym) the Moment Skills of DBT Distress Tolerance. I am trying to improve the way I think of myself and the situation. Putting on ‘good’ clothes reminds me I am a professional and have a few strong points. The saying is “clothes make the man”. They also make the woman.

“Clothes make the man” and the women. I’m reminding myself that I am a professional and a few strong points.

So, I dress for success because whether anyone else realizes it or not, this appointment is a job interview. I am interviewing, once again, for the job of lab rat.

I have been anxious about this appointment for days. I am not sure what the decline in my vision will mean –am I no longer qualified for the study?

After the usual round of screenings by technicians, I finally rotate around to the man himself. Regillo confirms there has been significant cell atrophy – read ‘wasting and death’ – since I last saw him in August. He calms my fears that I may have done this to myself. No, this was a natural progression of the disease. No external factors such as sunlight reflected off of the snow or my high blood pressure would have caused this to happen. This is good. I can now at least get rid of one concern. I have been declared not guilty.

Regillo calms my fears that I may have done this to myself. I have been declared not guilty.

Just the same, I still have the worry about the study. Will I still qualify? The study is for those with dry macular degeneration only and this rapid loss of vision suggests I may be developing wet AMD.

Regillo runs an IV and puts beta carotene in my veins. I daresay this is the first time I have ever mainlined ‘carrot juice’! Beta carotene is mostly Vitamin A and your eyes lap it up. By watching where the ‘carrot juice’ goes in your eyes and comparing old imagines with new ones, the technicians and doctor can see if my eyes have been creating new veins.

I daresay this is the first time I have ever mainlined ‘carrot juice’! It’s beta carotene & helps the doctor compare old images with new ones.

Thank God. There are no new veins in either of my eyes. I still fit diagnostic criteria for dry AMD and therefore the criteria for the study.

Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?

Regillo just smiled. Or at least I think he did. I still qualified for the study and I am confident I will be in it.

Written in March 2016. Reviewed September 2018.

Continue reading “Crazy Like a Fox”

Tech Talk

On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.

I was unable to read my text. I was calling people I had no intention of calling.

Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.

Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.

There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.

So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.

I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.

Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.

“Hey, things could be worse. Look at that poor guy!”

I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.

Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?

There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.

I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.

I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.

The tech guy loaned me a CCTV which makes things you put under the camera HUGE.

The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.

You probably already own a device that has accessibility settings. Ask someone to help you use them.

Written in March 2016. Reviewed September 2018.

Continue reading “Tech Talk”

Out To Lunch

So here I am in a holding pattern. Some of these things are like the Army. My father used to say his experience in the Army during WWII was a series of hurry-up-and-wait experiences. I find that true of all bureaucracies.

So, I am waiting to see Regillo again, Rock Star of Retinas and Wizard of Wills. I am waiting for my referrals for services to come through so I can get started on returning to a life that looks like the one I just lost and is “a life worth living” (a DBT Goal Definition depending upon whose life it is). Did I mention I have no, zero, nada, none patience?

I’m in a holding pattern. Did I mention I have no, zero, nada, none patience?

Here I want to send out kudos to people. Just people in general, although there are also some special people in the mix, too. I is a psychologist: I is. I get a kick out of people. I love their strengths and their foibles (especially their foibles) and their warmth. I know a lot of people and, hard to believe, some of them actually like me. In the last month I would not have gotten along without my ‘peeps’ (or is that only the spelling for chickens?). Not only did Lin and Dave embrace this work of therapy and do most of the work to make it a reality, other people in my life have come through for me big time. My husband has been ‘driving Miss Susie’ all over God’s green acre, class members have been giving me rides to my exercise programs and people have been inviting me to activities. You know who you are and I thank you.

Thank you to all who have been driving me, inviting me, helping me. You know who you are.

I have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT. One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities. A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.

ACCEPTS is a DBT Distress Tolerance Skill. A is for Activities. I go out to lunch, a lot! And other activities, too.

I have been working hard to maintain my exercise class schedule. I have begged and cajoled and pleaded for rides – often without the necessity for all of those dramatics – and I have volunteers who will take me. I have been to a concert and gone to play in the park. And, yes, I have been out to lunch, a lot!

Acute crisis (is that redundant?) or long-term adjustment to a truly crappy turn of events, the purpose of the Distress Tolerance Skills are just to get you through. They may not be pretty. They may not be elegant and they sure will not solve the problem but they get you through without doing any more harm.

More harm. A lot of what we do in lousy situations does more harm. The obvious ones are things such as abusing substances and beating up on the people we should be reaching out to. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

A lot of what we do in lousy situations does more harm. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

There are some cute little sayings in DBT that are easy to remember. One of them is “what we resist, persists.” Another one is “acceptance does not mean approval”. You don’t have to approve of a turn of events in order to accept that it happened. Trust me. I am very disapproving of what has happened to my vision. However, if I don’t accept the reality of the situation, how am I going to make things any better? I could have denied that I cannot see well. Kept on driving and killed someone. I could have kept on working and making mistakes. That would have hurt clients and destroyed my professional reputation. If I resisted the reality of having a vision loss, the problems would have persisted and gotten worse. At least this way I am taking steps, working with a professional to hopefully allow me to see better.

If I resisted the realty of a vision loss, the problems would have persisted and gotten worse.

I will revisit the concepts of Distress Tolerance as we go along. Right now let me get back to the original concept of this posting: I love people.

One of the BIG problems with AMD for me is not being able to see faces from a certain distance. I had an acquaintance tell me I had walked right past her and had not acknowledged her. It had me in tears because I truly do not want to offend people nor for people to think I am a snob.

I am discovering that having AMD visual impairment is a dilemma. My vision is good enough that I can navigate pretty well. I appear to be fully sighted….and blowing them off. I considered finding some way of identifying myself as partially sighted but I have not come up with any good ideas. Wearing a sign appears to be in bad taste and buying a white cane would be disrespectful of those who truly have serious vision loss. I thought about those black, black glasses but my sense of pride and my sense of style joined forces and rejected that idea in short order.

A BIG problem is not being able to see faces from a certain distance.

The idea I have chosen is simply to TELL people. I am a talker and this is a small town. Word travels at the speed of light. I have also swallowed my pride and have gotten into the habit of – when necessary – identifying myself as visually impaired. Bitter pill to swallow because it means changing my entire self-identification and admitting the tough girl needs some help. However, it has gotten easier and it does work. People are generally pretty kind.

I appear to be fully sighted. I have chosen to simply TELL people.

One of the Cs in ACCEPTS is comparison. The bitter pill of admitting to a visual handicap is a lot easier for me when I do a comparison. Do I want to withhold the information and look ditsy and stupid? After all, the information is probably posted right in front of my nose. Or is a visual handicap a better reason? Ditsy and stupid or visually impaired? You compare. You chose.

Taking from another DBT module, Interpersonal Effectiveness, I want to say something about how to ask for what you want and/or need. Social scientists have discovered that simply giving a reason, no matter how inane, will make people more likely to do something you would like. It could be as stupid as asking to move to the front of the line at the snack bar because you want a hot dog. Works better than you would ever believe.

The DBT skill Interpersonal Effectiveness says that you need to ask for what you want and/or need.

Written in February 2016. Reviewed September 2018.

Continue reading “Out To Lunch”

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.

Written February 2016. Reviewed September 2018.

Continue reading “A Tutu and A Tiara”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days. I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting. That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery. I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated. I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey. Thanks for understanding. Hope to see you there! Lin/Linda…

I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.

AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

There are a lot of links here. I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS. When you are done with the new page you opened, just close it. You do NOT need to use the back option. If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.

Topics-click below to move to a topic

Links We Like
See what vision is like at the various stages of AMD
What is AMD?
Glossary
Websites devoted to AMD and Other Forms of Macular Degeneratin
Websites containing information about AMD and Other Forms of Macular Degeneration
Support groups
Where to find services
Books & reading materials
Videos
Personal stories of living with AMD
Online newsletters
What is Stargardt’s Disease?
Science Stuff
Symptoms
Risk factors
Treatments
Research/clinical trials
- How can I become part of a clinical trial?
Coping with vision loss
Self-maintenance/ self-care
More to come…

Links We Like

Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
Click here for a great glossary
Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
Videos
- Click here for several videos
- Click here for the UK Macular Society’s Say Hello to Mac
- Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
Click here for an article about depression after diagnosis
Click here for a very comprehensive page about wet AMD
Click here for a very comprehensive page about dry AMD
Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.

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We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Thanks!

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I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

AREDS2-based Supplements

AREDS2-based Supplements With 0 or 25mg of Zinc

Navigating

Topics-click below to move to a topic

Links We Like

See what vision is like at the various stages of AMD

Glossary

Websites devoted to AMD and Other Forms of Macular Degeneration

Websites containing information about AMD and Other Forms of Macular Degeneration

Support

Message Boards including ones from

By postal mail

Start Your Own

On the phone/telesupport

Where to find services

Resources for Students

Books and reading materials

Specific Titles

Sources of Books

Videos

Personal stories of living with AMD

Online newsletters

What is AMD?

Wet Form

Dry Form

How fast does AMD progress?

What is Stargardt’s Disease?

The Science Stuff

Role of RPEs

Geographic Atrophy

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

Risk factors

Age

Diet/nutrition (working on this section)

Race

Gender

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

Connection between AMD and Alzheimer’s Disease

Treatments

Injections for Wet AMD

Telescopic implants

Are there new treatments in the pipeline?

Vitamins (see Self Maintenance/Self Care section below)

Research/Clinical trials

How can I become a part of a clinical trial?

Gene Therapy

Bionic Eye/Retinal Implants

Nutritional Supplements

Stem Cells

Coping with low vision

Low Vision Aids

Wearable Technology

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

Bioptic Driving