Sue’s Musings – Page 13 – My Macular Degeneration Journey/Journal

“You Don’t Look Blind!”

People mean well. They wish you the best and are just not educated about dry, age-related macular degeneration. They also are not used to a condition with no cure and no treatment. Therefore, God bless them, they say some really stupid things.

So far my favorite is “it’s getting better; isn’t it?” Get that one every couple of weeks.

What part of progressive, incurable condition don’t they get? I want to scream “No!” but I try to be patient and explain to them that dry AMD has no treatment and no cure and that – for some reason I think has to do with a rather poor genetic make-up in the eye department – my vision is on a fast track to hell.

Then I feel bad because they look so sad. Like their ice cream just fell off the cone. I somehow feel like I have disappointed them.

Since I don’t like to disappoint people I try to cheer them up (is there something wrong with that picture?) and tell them I am signed up for two studies and have been waiting for a year and a half. I am sure I will get some sort of help through one of the studies.

Then the advice starts. I should tell those researchers I want something done now! I should be more forceful with them. And why am I waiting around for a fancy, new treatment anyway? Their great aunt Tillie got those shots and they helped a lot. You need to go and get them!

Sometimes it makes me wonder how I got to 63 without making some stupid mistake and being accidentally killed. After all, I apparently am not very bright if the answer is that simple! Good grief.

Then there is the ever popular “you don’t look blind. You’re doing OK.”

This statement begs the question “what does a blind person look like?” I would love to ask but I don’t want to be rude. Truth of the matter being, many people have never actually interacted with a visually impaired person and, if they had, they may not have ever realized it. Since I have walked down the hall and managed not to run into anyone, I must not have an impairment. After all, in the movies don’t all of the blind people stumble around with their hands out in front of them? I, I assure you, don’t do that.

Last one: “it would be great to retire and just relax all day!”

There are so many answers to that one, I don’t know where to start! First of all, motor in my butt here. I don’t sit well for five minutes. Then, we are not talking a day or two, we are talking maybe 30 years. What am I going to do with myself for 30 years? Even relaxation gets old.

So there you have it. People say really dumb things. I try to remember it is generally out of concern and ignorance, sometimes a LOT of both. Therefore I try to be patient and turn the interaction into a teachable moment. I get up on my soapbox and tell them about AMD. Try to do the same; will you? After all, we don’t want to spend the rest of our lives listening to idiot comments; do we?

Continue reading ““You Don’t Look Blind!””

Independence

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

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

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

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

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

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

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

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

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

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

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

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

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

Gotta go! Continue reading “Independence”

Counting Pennies

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

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

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

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

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

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

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

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

I had confidence things could be worked out.

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

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

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

Continue reading “Counting Pennies”

Resolutions

Back to school tomorrow. Christmas vacation is nearly over. We are already two days into the new year.

Saturday after our Zumba ‘party’ was yoga. My yogini was more reflective. She asked what we would like to make less room for in our lives and what we would like to make more room for. That was to be our ‘resolution’.

I throw the questions out to you as well. What do you want to spend less time and energy on in 2017?

I spent a whole lot of 2016 time and energy on worry and running twice as hard just to stay in place. Getting services, finding transportation, etc. Things fell apart and a good part of my year was spent trying to piece them back together. Although I understand I will never leave that totally behind, I would like to do a whole less of that.

What do you want to spend more time and energy on this year? I would like to start moving ahead again. Not sure what that might entail, exactly.

I very much hope to get into one of the studies. I want to be able to write about it here and maybe even speak about the experience. I see things evolving here.

Not sure where, but I want to take some trips. I want to see and experience more and even if I were not losing my vision, time is running out. The comfort factor seems to be more and more competing with the adventure factor when I look at destinations. Not sure when I started to get old but it is happening.

Crazy as it may sound, I would like to go forward from here with a little grace. I would like a little serenity in my style. Not being quite so flappable.

How to do that? Not sure. Acceptance. Faith in whatever you have faith in. This is not my fault. This is not my father’s fault. This is not God’s fault. Shit happens. The measure of a man is not taken when everything is going right but when everything is going wrong. Competitive to the core, I don’t want to be found lacking.

So what are you going to try to do a lot less of? Spend less time and energy on? What are you putting in its place? What do you feel you need to do to make 2017 valuable to you? This is your chance to make your choice. Continue reading “Resolutions”

Kicking and Screaming

It will be one week tomorrow I go and plead my case to the clinical trial research people. I feel as if I am making headway on my quest to be a lab rat in the stem cell study but I am still not totally comfortable. There are just too many unknown factors. Besides, I HATE dealing with bureaucracies!

How to deal with a bureaucracy? I prefer not to deal with one at all. They have silly rules and they never see things my way. However, since kicking and screaming seldom get me anywhere positive, I guess I have to deal.

Calvin Sun wrote rules for dealing with bureaucratic nonsense. The article is entitled 10+ Ways to Overcome Bureaucratic Obstacles. Sun recommends some planning ahead. First of all, we need to pick our battles. Have you heard the military phrase “is this a hill you want to die on?” It means we should never waste our resources on battles for trivial goals. We need to make sure the victory will be worth the effort.

It is also important to know what you might settle for. If you cannot get to objective A, is there an objective B that might be almost as good?

Lots of people make the mistake of emptying both barrels at the first person they encounter. The first point of contact folks generally cannot give you much help…but they sure can hurt you!

Blow up at the receptionist and you will never make it out of the lobby.

Another point: Find out who the decision maker is. This is where I am now on my quest. I have been told who is deciding the hierarchy of subjects on the referral list. I am taking the battle to him.

Speaking in general, bureaucracies often have trouble getting out of their own ways. They get so involved in following procedures and in saying what they “can’t do” they forget what other options may be available. I found the second study by asking, if the first study is defunct, what can you offer me. Make sure you ask for alternatives that are available.

Building up goodwill is always essential, but even more crucial when you want or need something. I imagine some of you know the two people in any organization you need to be friendly with. The office manager and the maintenance man. Build friendly relationships with those two and everyone else you can find and you have a lot better chance of having things happen. Really, sometimes it is not what you know but who you know.

Finally, if you must, accept defeat graciously. Also accept victory graciously as well. No one likes a sore loser. A sore winner can even be worse.

There they are. A sampling of the 10+ rules for dealing with bureaucracy. Let’s hope they work.

Continue reading “Kicking and Screaming”

A Life Worth Living

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

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

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

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

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

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

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

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

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

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

Here come the thought questions:

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

Think about it.

Continue reading “A Life Worth Living”

Resistance Is Futile

Sometimes I think it is a sin ‘mature’ folks – those of us of a certain age, as it were – have to jump through all the government, medical and otherwise hoops we have to jump through and other times I believe it is only the older people who have developed enough social skills and understanding to actually navigate this mess!

Case in point, the transit company had me going to school instead of the office today. The scheduler argued I had told her wrong. There was no way to prove who said what, so I just capitulated. I am not fighting a “he said – she said” battle at 6 am. Never had these problems when I drove myself! May have tried fighting with her when I was younger.

Now I take a page from the Borg – you Star Trek fans remember “Resistance is futile”. Better to hunker down and prepare for the next time.

I also continue to navigate the straits and narrows of the research organization. Having no pilot to tell me where the sand bars are, I have been pretty uneasy about getting hung up by some wrong move or wrong word.

After my friend accused me of lack of motivation, she made me promise to try calling the pharmaceutical company and see if they could shed some light on this. Fat chance. I get so tired of being given the bum’s rush by receptionist types! I am not a bum!

Since the receptionist chickie (sounded about 22) kept saying I should talk to the research facility people, I decided to set up another appointment with Regillo. This will be #3, guys.

Stubbornness can be a virtue. When it is, it uses the pseudonym persistence. I guess Someone decided to reward me because after chatting amiably with the (older than a chickie) receptionist there, I got transferred to a researcher at a different facility.

According to this lovely lady, the second study has run the first batch of subjects and is now monitoring them. The second batch goes in the early Spring. Asked who decides who gets into that second batch, she threw Regillo under the bus – metaphorically speaking, of course. My target will have to be Regillo. He is my gatekeeper.

Target identified. Phasers locked on. I now need to convince the man to move me up the list. Sigh. Never knew this lab rat business could be such hard work. And I am not even in the study yet!

A couple of secondary gains were these: I asked the researcher at the other facility to remember me if she does any dry AMD work (doing wet now) and she put the conversation in my record. A couple of hours later I got an email with an ‘official’ update. Maybe showing interest in another researcher was a good plan? Make whom you are really interested in a little less complacent?

So that is the update. Regillo in two weeks. I am thinking this may be my second level job interview. Wish me luck!

Continue reading “Resistance Is Futile”

All I Want for Christmas

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

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

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

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

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

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

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

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

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

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

written 12/2/2016

Continue reading “All I Want for Christmas”

Monday, Monday

Monday, Monday… starting another work week. [We haven’t had a song reference for awhile so here’s Monday, Monday by The Mamas & The Papas.]

I say I was ‘bad’ over the weekend but that may not be completely true. Just mostly true. I did finish mowing the lawn Friday night. I went to Zumba Saturday and walked the dog every day. Even got her to the dog park twice. My husband is moving around better and doing some short distance driving so we took the opportunity to take her. I cleaned the bathroom and sorted laundry.

I also did a little cooking. I don’t like to cook and often depend upon something ‘quick and dirty’, meaning ‘already prepared’ for meals. This is not at all good, especially when I am feeling stressed. Good nutrition is important.

Even if cooking a good meal has become difficult for you – or you just plain don’t enjoy it – you should be aware of nutrition.

I cleaned up the kitchen. Put all the dishes in the dishwasher….oh, I also changed and washed the bedding. Maybe my saying I was being ‘bad’ was not mostly true but pretty much true.

The reason l say I was ‘bad’ is because I sat and listened to an audio book all Sunday afternoon. I generally don’t let myself ‘waste’ time like that. There was plenty of work to do and I tend to be hard on myself when it is not getting done. When I was being raised hearing, “How can you just sit there and look at things that need to be done?” was not a question, it was an accusation of laziness. Sunday I sat there and looked at work!

I put chemicals in the pool. Tried to figure out what is wrong with the pool vacuum. Finished typing a report for work. Wrote two pages for the website. Looked over my notes for DBT class, arranged for a neighborhood child to weed the garden….so maybe I was ‘bad’ a little bit?

Or maybe I wasn’t anywhere nearly as bad as I thought I was. Maybe taking a little time off to enjoy some entertainment is a good thing?

A lot of us were raised with a strong work ethic. I know I was raised that way. But stopping to replenish yourself is important. Sometimes this visually impaired business can be challenging and tiring. Things suddenly take on a whole new level of difficulty.

And sometimes it is alright to stare at work and be ‘bad’. It is not like it is going to go anywhere!

Continue reading “Monday, Monday”

Three States of Mind

I am on a roll so I am going to ‘roll’ right into the Three States of Mind from DBT. This is another introductory concept that I somehow think I forgot to give you as I have been navigating my own personal mess and needs here. More educational component this.

The Three States of Mind are not something esoteric or bizarre that you can only understand after a thorough initiation into some strange sect. They are actually pretty simple and I suspect that at one time or another you have been in each of the three of them. The three states are reasonable (or rational), emotional and wise.

Because this is supposed to just be a short post – better on the eyes, my dears – I am going to use an example that I used in class. Once more, real life Sue. God bless you.

I walk into a sale and there is a mechanical rabbit toy. It is cute and plush. When you push a button the ears go up and down and it sings a song. What do I say? “Isn’t that cute?! I want that rabbit!” That is the emotional mind. At the time I was 61 years old and I had absolutely no use for a toy rabbit. I would not want it in a few days but I wanted that rabbit – now! It was adorable.

“Isn’t that cute?! I want that rabbit!” says my emotional mind.

Who is heard from next? My reasonable (or rational) mind. “How totally ridiculous! It is a waste of money. What will you ever do with that thing?” Totally logical; right? Think Mr. Spock in your head.

“How totally ridiculous! It is a waste of money. What will you ever do with that thing?” says my rational mind.

“I don’t care! I want that rabbit! I want it!” Back to my emotional mind.

Now it is possible for this to go on for a long time. If I do not reach an agreement in the middle – a dialectic, remember? – there will be no peace in my head. I buy the rabbit and my reasonable mind has a field day.

I buy the rabbit and my reasonable mind has a field day ridiculing my emotional mind. If I don’t buy it, my emotional mind sulks.

Enter wise mind. Wise mind finds the middle ground. It finds the dialectic, the balance. Wise mind considers both sides and tries to make each of the other minds happy.

Three minds: reasonable, emotional and wise. — Three minds: reasonable, emotion and wise.

I must have walked away and returned to that rabbit three or four times before I came upon a wise mind solution. I would buy the rabbit but not keep it. My emotional mind would be happy because I got to play with the toy for a little bit. Emotional mind tends to be very short term in its thinking. I would then give it to a friend’s daughter and satisfy my reasonable mind. Toy rabbits should be owned by children. That is rational. Everyone is happy and there is peace in the kingdom.

The wise mind says to buy the rabbit and not keep it.

I buy the rabbit, play with it for a little bit (emotional mind is happy).

I then give it to a friend’s daughter (reasonable mind is happy). Toy rabbits should be owned by children. That is rational.

There will be times you want to be ruled by your emotional mind even though you know it is not a long-term or rational solution. There will be times you will be urged to do the “logical” thing and ignore your feelings. Remember there is a peaceful alternative where both your emotional and your reasonable mind can get some of what they each want. That place is in your wise mind. Try to go there often.

Written March 2016. Reviewed September 2018.

Continue reading “Three States of Mind”

A Watch Hunt

I wish I knew where my watch is. I have looked under the bed and even stripped the bed. I shook out the blankets and the sheets. No watch.

I have moved everything on the bathroom vanity where I often carelessly toss it before I take a bath. No watch.

I have checked the pockets of everything I have had on in the last day, pants and jackets. Maybe it came undone and fell in a pocket. Nope. No watch.

My husband is sort of used to me losing things. He has been on ‘The Great Cell Phone Hunt’ several times. When I told him I had lost my watch his comment was “Really? What a surprise.” Smart Ass.

The simple fact of the matter? I am a slob. I am a piler. One of the major reasons – or at least a contributing factor – for my becoming a professional and not a domestic goddess is I hate to clean.

Now it is not the worst I have seen. Just about the worst was during a home visit on which I saw multiple piles of dried dog feces on the living room floor. No, it is not of the dried dog poop standard, but it ain’t good.

I like to have my ‘stuff’. Stuff ends up in piles. Things get lost in piles of V.I.S. – That’s Very Important Stuff, by the way.

When I was fully sighted I could dig through piles of V.I.S. and find what I was looking for. Now I may sort past what I am looking for and have not a clue it is there.

People are making ‘casual’ suggestions. Maybe I should get rid of some of my V.I.S. Maybe I should get better organized. Would it not be great to know where everything is? Let’s hear it for organization? Hmmmm

Right now there are a lot of ways I am working on inventing the ‘new me’. Not really liking it, but I have to keep ‘turning my mind’ (DBT concept alert!) and accepting that things have changed. Some of the changes I am being forced to make are minor and some of them are closer to the core. Intellectually – and as a DBT teacher – I know that I should work on accepting reality and changing attitudes and habits to meet that new reality. I also know that it is really hard to do at times. That is especially true when the changes have to be with things that are pretty close to the core self. After all, I have been a slob for 62 years and I kind of like it.

So I will ‘turn my mind’ and make some of the necessary changes. Later. Right now it appears I need another watch!

Written March 2016. Reviewed September 2018.

Continue reading “A Watch Hunt”

Sue’s Terrible, Awful, No Good Day!

Back to yesterday. I was frustrated. I was pissy. I was just about ready to sell my soul to be full-sighted again. Daniel Webster, where did you find that guy you bargained with?

I have always done stupid crap but since I have had vision problems I think I do more stupid crap. Yesterday the upstairs vacuum stopped sucking stuff up. There was a wad of dog hair that it had very neatly balled up and spit back out and that wad was sitting on the carpet. OK. Vacuum mechanic I am not, but maybe I can fix this.

I have always done stupid crap but since I have had vision problems I think I do more stupid crap.

To make a long story short, I took the thing apart looking for a blockage. Got confused and fed said wad of dog hair into the intake for the motor. Burning dog hair is not one of my comfort smells.

Stupid crap frustration moment 1.

Then, I decided to bite the bullet and complete the formal request form for the publishing house I have been cursing out for the past week. Have you ever noticed you NEVER fit in ANY of the boxes or is that just me? I think I have spent my life being ‘other’.

Essentially there was no way for me to fill out the form correctly because the needs the form was built to handle and my needs were very different. I ended up filling in the ‘additional information’ section with a ‘book’ about my problems and burning desire to get back to work and as close to ‘me’ as I could get. I was angry and resentful and frustrated and then there were tears. This round peg is tired of trying to fit into square holes!

Frustration moments 2, 3 and 4. Possibly even 5.

THEN I tried to print that accursed form off and the printer jammed. I did not see the paper jam was wrapped around part of the printer. Honestly, I did not. Do you think I would have pulled that hard and broken my printer if I had???? Pulled that sucker right off.

That was frustration moment 6.

The point has been made before: I am not a patient person. Before, in this circumstance I would have jumped in the car and cruised on over to Best Buy for a new printer. Uhhh, no car. Can’t drive. Husband in for the night. No printer.

Let’s get up to about frustration moment 9 here.

Top all of this off with a misstep on the steps. I have dark carpet on the steps and dark tile on the floor. Did not bother to turn on the stair light. Did not heed my habilitation person’s suggestion to use contrast. There is one more step than I anticipated. Came down on the side of the ankle but stayed upright.

That rounds it all off with frustration moment 10!

Since no convenient devil popped up to bargain for my soul – and let me tell you, I could have been ripe for it – I had to deal with myself. Bring myself down or it was going to get NASTY.

First thing I did was order a new printer on Amazon. Quickly replacing things may not be a financial option for many of you but thankfully it is for me. I replaced the thing so I would only have to deal with the frustration of no printer for a few days.

Damage control. What plan can you devise for damage control?

Then I went into the self-soothe skills. Chocolate ice cream is good. One dish, not the entire half-gallon. I cuddled with the beastie baby. I drew a hot bath and put in vanilla shower gel for a bubble bath. After that I put a dab of Vicks Vapor Rub on my chest and crawled into bed. Conveniently I had just changed the bed that day so the sheets were cool and crisp. I pulled the sheets over my head and smelled the Vicks.

Then I went into self-soothe skills. I ate chocolate ice cream, cuddled the beastie baby, drew a hot bubble bath, put Vicks Vapor Rub on my chest & crawled into bed.

Why Vicks? It is another comfort smell for me. It is the smell of being home sick from school and getting to eat chicken noodle soup and draw on the hot vaporizer with wax crayons.

So there you have it. Yesterday stank. Nobody rescued me so I had to rescue myself.

Remember, I not only teach DBT, I am a client. 🙂

Written March 2016. Reviewed September 2018.

Continue reading “Sue’s Terrible, Awful, No Good Day!”

Yesterday

I am typing this on my laptop because the tablet has decided to take a vacation today. Hopefully, this is not the next thing to go wrong.

Yesterday. To follow the Beatles theme, let’s just call this post “Yesterday”. But yesterday was not a day to look back on wistfully. It was pretty frustrating.

Like I said, I have great support. My Saturday morning ride to Zumba took me to class – Thank you! – and I noticed one of the ‘girls’ hadn’t been there in a few weeks, still not there. I knew she has been having health problems and sure enough, that was the reason my driver gave me for this girl’s continued absence.

It made me sad. Not just because she is having problems but also because the last time I saw her and asked how she was, this girl had refused to tell me. She said I had enough problems of my own and would not lean on me for hers.

I cannot speak for everyone who has AMD, but for me, AMD has not taken me out of the human race. I do care when friends and acquaintances are having problems and I do want to lend any sort of hand that I can. Sympathy is one thing but when it goes across the line to pity, I have a problem with it. I know that this girl was only trying to lessen my burden but sometimes we lessen our burdens by taking some of the burdens from someone else. I feel I need to be given the opportunity to CARE. How about you?

Sympathy is one thing but when it goes across the line to pity, I have a problem with it.

Being the educator I am at heart, I’m just going to add a little DBT here and finish the rest of my miserable, awful, no-good day venting in the next post. If you are struggling with your vision as I do without the reader, you prefer short posts and articles to read. Too much is too much, yes?

Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.

We sometimes have to weather a crisis by getting out of our own problems and helping someone else.

The other ACCEPTS skill I see here is comparison (the second ‘c’). It really is true that misery loves company and people like to see someone who is worse off than they are (OK, so I am not always Little Miss Compassion). This girl is not able to take Zumba. I can! She is in physical pain. I am not. It could be worse.

It really is true that misery loves company and people like to see someone who is worse off than they are.

That is probably not the best note to end my plea for others to allow me to be compassionate towards them, but I suspect you get the point.

Kid glove handling not required here. Let me do the caregiving and support I can and was used to doing before my vision loss. Enough said.

Written March 2016. Updated September 2018.

Continue reading “Yesterday”

Soothe Thyself

Change is stressful. Even good change is stressful. This is my second week back to work. Right now it is only part-time but that is enough. Less than two months ago I was working 50 hour weeks and thriving on it. Now I come home after a 7 hour day, three days a week and I am wiped out. What the hey?!?

Change is stressful. Even good change is stressful.

This is obviously something I want. I would not be trying to go back to work unless I really wanted it. It is not something I have to do; it is something I want to do. It is getting easier the more I do it. I am relaxing a little bit just in knowing I am capable – with the help of a lot of good people and my ‘toys’ – of doing the job. My stamina is building. But until I get my groove back and my stamina built, what do I do with all of this STRESS?

Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?

DBT looks at self-soothing through all five of the senses. We need to find ways of being gentle and kind to ourselves, comforting and nurturing, and we can do that through the five senses.

Self-soothing is not in the head. It is in the body because that is where the stress is stored.

The first of the senses we will discuss is vision. Well, yippee. Not seeing too well here. How can I be calmed visually?

My AMD is not all that advanced – Thank God. I have peripheral vision. I am also capable of looking at something big, like the sky with clouds, and have that sight fill most of my visual field. Most of the sky with clouds is being seen by the rest of my retina, not the macula. (There are times I will look at something big like the sky just to remember what it is like to see something without a chunk in the middle taken out). Watching the clouds blow across a bright, blue sky is a self-soothing experience for me.

Is there something that you can see that is self-soothing for you? If not, don’t worry. There are four other senses you can fall back on.

How about hearing? Some people like easy-listening or slow, classical music. I am a child of nature so my favorites are from the outdoors. Right now it is getting dusk and the birds are getting ready to roost. Can you hear the robins chirping? Day is done and it is time to rest.

When the sun goes down and the birds are quiet, I can just hear the frogs calling in a wetland nearby. If you don’t live somewhere you can listen to nature, there are recordings of natural sounds that you can download on your computer.

What sounds are calming for you? Listen to them and sooth yourself.

Smell is a great sense. It is very attached to emotions and memory. Even if I could not consciously remember my childhood, for example, I would know it was happy. How, you may ask? Crazy as it sounds, two of my favorite smells are hot tar and creosote. I was raised in a new, 50s era neighborhood with new telephone and light poles (creosote treated) and tar and chip roads. In the heat of the summer, the air was redolent with hydrocarbons. Other people may think they stink, but I love them. They are the smells of my childhood summers.

Which all goes to say, a smell that soothes one person may send another gagging to the bathroom. That’s alright. Smells and their effects are very personal because they are connected to memory and emotion. The olfactory center of your brain sits very close to the emotional brain and the memory center. In this case it really is a matter of location, location, location.

So what smells are able to calm you? While you can get a variety of essential oils that are supposed to be soothing, you don’t have to go the commercial route. Creosote and hot tar may work just as well.

A smell that soothes one person may send another gagging to the bathroom.

So that is three senses. The last ones are, of course, touch and taste.

A friend bought me a gift certificate for a massage when everything went south with my eyes a couple of months back. Massages are wonderful, but they are expensive. If you are on a limited budget you might want to put lotion on your feet or take a nice, bubble bath. Last evening when I was stressed and a little pissy, I went upstairs and took a hot bath with vanilla shower gel. Did the trick. Other ideas would include putting fresh sheets on the bed or putting on a plush, wooly sweater. Curl up and be engulfed in your favorite chair. Pet the dog. Run your fingers along the satin on the blanket.

There are a lot of ways to self-sooth with touch. Find one that works for you.

The last of the senses is taste. A lot of us can get in trouble with taste. I want to self-sooth so I eat the entire Boston cream pie. Wonderful on the lips but not so much on the hips, huh? Moderation and savor are the two key words here. Get one expensive chocolate and see how long it can melt in your mouth. See how many different flavors you can taste. Roll it around in your mouth and make it a multisensory experience. Not only taste that chocolate but feel it and smell it as well. Self-soothing with taste is not about the quantity of food but about the quality of the experience.

Moderation and savor are the two key words here.

So I am listening to the birds calling before night falls. Outside, I am looking at the sky and watching the clouds. I can feel a light, cool breeze on my face. I am not tasting anything, but the smell? Well, I guess it is Spring. It was a stressful day, but I am winding down with my self-soothing skills. It is going to be a restful night.

Written March 2016. Reviewed September 2018.

Continue reading “Soothe Thyself”

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”

Mind Weeds

I teach mindfulness. Sort of funny when you consider I am a queen of stray thoughts. Stray thought and mind weeds.

Not sure who gets to decide that something is a weed. Consider the dandelion. A weed to many but the dandelion is bright yellow and cheery. It is a harbinger of summer. You know it is summer when your yard is full of dandelions.

Who gets to decide that something is a weed?

Dandelions are often the first flowers we pick. They are a sign of love. I suspect that when many of you gave your first bouquet to someone, it was bright, yellow dandelions offered from a chubby hand.

You can do a lot with dandelions. When they go to seed, you can blow them off and chase the little parachutes as they fly away. If you put your thumb in exactly the right place, you can sing “Momma had a baby and his head popped off!” Pop! The flower will fly right into your victim’s face.

Dandelions can be eaten. I have never eaten any but I understand they can be quite good with hot bacon dressing.

Possibly most importantly, dandelions are tenacious. They are survivors. There are thousands of people who make a living trying to get rid of dandelions and the other ‘weeds’. That there is an army out there trying in vain to get rid of them is a testimony to how tenacious they actually are.

Dandelions are weeds to some but to others they are harbingers of summer, signs of love, little parachutes to chase and quite good with hot bacon dressing.

So, in short, I like weeds. I like their defiance in the face of those who would make everything ‘nice’ and status quo. I think the world is a better place with a little wild.

Which is a way of leading into – and justifying – this post. This post is a collection of mind weeds and stray thoughts. If you know me, you know the mind goes a lot of different places. Get ready and try to keep up.

This has been a busy week and I have done a fair amount of wondering. I spent Monday at the medical center waiting for it to be time for my appointments. I had to connive to get two on the same day. I really believe they should write a program that actually coordinates your appointments so that you are not spending your life running to the doctor! Why has this not happened?

Why can’t appointments be coordinated so you can see two doctors in one day?

Short of that, they should have a mile’s walk marked off. Maybe an arcade or a game room somewhere in the facility. I had a book and my handheld reader, but still those places are boring if you have to hang around for a few hours.

Why can’t medical facilities have walking paths, arcades and game rooms?

My handheld reader caused a stir in the waiting room of my optometrist/low vision specialist. An older gentleman was enthralled with it and had never seen one before. All of the older folks around us were craning their necks to get a look at the handy dandy little machine I had. I gave the man a copy of a vision aids catalog I had been given. He had no idea any such thing even existed. Why not????

Why don’t a lot of older people with low vision know about low vision aids?

My optometrist/low vision specialist said – first of all – those who are not ‘stable’ are not told about vision aids such as that. My first thought was being pleased I had been called ‘stable’; doesn’t happen that often. Of course she meant visually stable. Oh well. But the why question stands. Why aren’t people actually being made aware of what is out there and available? My little reader certainly has made things better for me.

Why isn’t everyone with low vision made aware of what is out there and available?

She also said I was getting great service from BVS. Blindness and Visual Services is a branch of the Office of Vocational Rehabilitation (OVR). The goal is to get me back to work. Great. I want to work. I want to work because it will improve the quality of my life. What about the quality of that man’s life?

I also asked her why I had never seen anyone wearing the funny, clip-on glasses I had been given to try. I don’t believe any one else has seen anyone wearing them either. That thought is based on the weird looks I got wearing them in Walmart.

Why have I never seen anyone wearing the funny, clip-on glasses in Walmart?

She said she has recommended/sold them for years but people don’t wear them. Why? Does it have something to do with acceptance of the truth of the disability? Vanity? Inquiring mind here.

Why not make use of something that would actually help?

I saw my general practitioner, too. The last time I was in that office I was working myself into a stroke. It was early on, just after my Macular Degeneration did what I had been assured it would not do. Namely, go south like the first drop on a roller coaster.

Anyway, he was happy to see I had not stroked out and I had stopped having panic attacks. He thought it was great that we have been working on this website and thought he might refer some of his macular degeneration clients to me for counseling. I said I would consider it because I have at least visited the territory if not lived there for very long. Then it dawned upon me. I am not allowed to take Medicare as payment! Wrong degree. Government regulations. I could probably do some good with the visually impaired population.

Why would Medicare not be willing to pay me?

Another time this week I went to see my ophthalmologist. The appointment was sort of rushed because his wife was in labor (and no, the baby’s head did not pop off!) He was pleased with my not developing wet AMD and – once again – with my being ‘stable’. Ha! Twice in one week.

They dilated my eyes that day. Has anyone had ‘pebble glass’ vision after their eyes were dilated? My optometrist/ low vision person said it comes with the AMD. Weird. I had never had it before my eyes got bad. I felt like I was looking at an impressionist painting. Why?

Why was I seeing ‘pebble glass’ after my eyes were dilated?

So that is pretty much it for rambling – least for now. I am tilting at windmills on a few other fronts. Not sure I will win but I intend to be heard. I have been having successes and failures, but those are for another post. I just hope the mind weeds I have scattered – like dandelion seeds – have taken root somewhere.

“You see things and you say ‘Why?’, but I dream things that never were and I say ‘Why not?’ ” – George Bernard Shaw

Written March 2016. Reviewed September 2018.

Continue reading “Mind Weeds”

I’m Baaacccckkkk!

I went back to work this week. It was only part-time and may be part-time for the foreseeable future, but I am back. I think.

I have been told I set a land speed record in getting back to work. I don’t see it as anything extraordinary. Everyone has something they have no intention of giving up for a disability. A lot of people don’t want to give up driving – ever! Others insist upon playing golf or attending church every week. I want to work. I pretty much need to work.

I have done this job for 38 years. It is my profession. In many ways it is my identity and my purpose.

I am a fortunate person. Instead of a cloud of misfortune, ‘dumb luck’ has followed me around pretty much my entire life. When I stop to consider how fortunate I have always been, it is a little unsettling – when is the tide going to turn? However, I try to give thanks for this crazy, incredible run of good fortune whenever I can.

I have been fortunate to have the help of a lot of good people in getting back to work. My husband takes me in and a friend drives me home. Blindness and Visual Services (BVS) has helped to fill my office with ‘toys’. I have a CCTV and a handheld reader as well as a zoom feature on my computer. My low vision specialist has me trying ‘funny glasses’ that magnify and either allow me to read or – another pair – to look over a classroom full of kids. Thank you.

I’ve been fortunate to have a lot of help in getting back to work from my husband and others driving me to and from work and from the people getting me my ‘toys’.

People on the job have been very supportive. The custodian set up my CCTV. The computer person has been scanning materials onto a tablet so I can enlarge them. I have literally been welcomed back with open arms by many staff. Thank you.

Very importantly I have been welcomed back by the administration. I am being given a chance to prove myself. They have been willing to work with me even though things are going to be a bit ‘different’ from now until I am either retired or forced by the disease or finances to go on disability retirement. Thank you.

I’ve been welcomed back by my co-workers and the administration. Thank you.

As I said, I have always been fortunate. Not everyone gets to work with the kind of people I work with, for example. I have not once had to utter the phrase ADA but maybe you will. ADA is the Americans with Disabilities Act. As much as it is hard for me to wrap my head around it, I now come under this act. Damn.

The ADA says no employer with 15 or more employees may discriminate against an employee based on a disability in any aspect of employment. The law stipulates that both the employee must be able to perform essential functions of the job and that the employer must make reasonable accommodations in the workplace. The employee and his reasonable accommodations must not create undue hardship for the employer, his business and his clients.

The American with Disabilities Act (ADA) has laws governing the rights of the disabled employee and the employer in companies with 15 or more people.

There are a lot of other things associated with ADA. For example, these are the laws that gave us ramps and cut curbs. However, I will be staying with this simple information in this posting. Follow the links if you are looking for more.

How does ADA affect me? I am back to me with all of my cool toys. At least for now. I have told my boss to watch me. How am I doing? Am I making mistakes? Am I too slow?

My ‘undue hardship’ would fall squarely on my students. Not having that. That is why I’m back…I think.

I’m back to me with my cool toys and under the watchful eye of my boss. I won’t let my students be affected by my ‘undue hardship’.

Written March 2016. Reviewed September 2018.

Continue reading “I’m Baaacccckkkk!”

Sim City for Low Vision Folks

I have already written a love letter to Amazon. Today I am going to write a love letter to the Apple app store. So, I’m fickle. Shoot me.

There are some cool, free things in the App Store. I downloaded a magnifier that uses the camera on my tablet to take images and enlarge them, for example. However, today I want to talk about the Macular Degeneration Simulator.

People are great. I said that before but it bears repeating. People are great but unless AMD has touched them directly they have not a clue what it is. You know how people hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss! People have a lot of wrong ideas about what is going on with us AMD folks.

People are great but many hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss!

I have had several people take my arm and try to steer me. Sweet and caring thoughts are behind the actions. However, I don’t really need that kind of help. I can still navigate pretty well and expect to be able to do it for some time to come.

Several sweet people have taken my arm to try to steer me but I can still navigate pretty well.

I have also had several people suggest I get a dog. To begin with, the beastie baby is used to being an only dog. Also, unless you can find me a dog that can read, tell me whom I am looking at and drive, I have no use for a service dog.

Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator. On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. [As of October 2018, the iPhone version of this app is NOT available but there is a version for the Apple iPad. Check the App Store on your iPad.]

I downloaded this app from the App Store. It is a great price: free. It has four settings: normal, early, middle and *shudder* late disease. The late simulation scares the bejesus out of me.

The Apple AMD Simulator has 4 settings: normal, early, middle and *shudder* late disease.

How I see is worse than early and less than middle. I went from basically normal to that in about two weeks time, but that was an earlier post.

I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.

So there that is. If you have folks in your life who don’t get it, try showing them how you see. The AMD Simulator is in the App Store and it is free.

I highly recommend the free Apple app AMD Simulator to show folks what AMD actually is.

Written March 2016. Reviewed September 2018.

October 2018: There is one app that I found: ViaOpta Sim (search Google Play for the Android version or Apple App Store for the Apple version)
There are 4 webpages that do vision simulation:
- - https://www.versanthealth.com/visionloss/
  - You have to enter your email address: https://simulator.seenow.org/
  - Choose the type of impairment: https://www.looktoyourfuture.com/low-vision
  - http://www.visionaware.org/info/your-eye-condition/age-related-macular-degeneration-amd/how-does-amd-affect-vision/125
Next: I’m Baaacccckkkk!

Home

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”

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.

Next: Dear Amazon: A Love Letter

HOME

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”

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”

What Do I Do Now?

So, since this is all about me, let’s talk about me. The week following my ski trip, my vision went to hell. I am an avid reader and had just purchased two paperback books by best-selling authors. I had not touched the one and had 30 pages to go in the other. It was that fast that I lost my ability to read standard print. Before I gave up on the paperbacks I was standing in the middle of the upstairs hallway directly under a light. It was all I could do to make out what I was reading.

My vision went to hell-all of a sudden, I couldn’t read standard print!

I am a professional Psychologist but that means something different for me than it means for the general public. I am an assessing psychologist. I administer and interpret all sorts of tests. Intelligence tests, adaptive behavior tests, achievement tests, personality tests – this word ‘tests’ has been my bread-and-butter for 38 years.

One of my jobs is as a School Psychologist. I was not able to see the testing material. Fourth graders with reading problems started to correct me. There was a real problem here.

Fourth graders with reading problems were correcting me.

I sent a note to my ophthalmologist. I told him nothing was working. I wore my contacts with my glasses. Did not help. I wore my glasses with bifocals. That did not help either. There was something very wrong.

I was also noticing an exacerbation of other symptoms. I was having trouble recognizing people. Earlier, if I looked at someone, my right eye was doing pretty much all of the seeing. Looking at them with my left eye only, their faces would white out. Now, unless you were within 6 feet of me, I could not see you. Your face was simply a white blob.

I was having trouble recognizing people.

Click on the photo to get a larger version

A wild thing that was happening I learned later is called Charles Bonnet Syndrome which causes visual hallucinations. I have had trouble recognizing what I was seeing from a distance. Walking the dog and looking across the field, I would often comment that I was seeing something but I had no idea what the hell it was. The dog generally wasn’t very helpful unless it turned out to be another dog. The rest of the stuff she refused to identify for me.

I would see something and not know what the hell it was or would see bunnies & kitties that were not there or would be plastic bags stuck under trees.

Anyway, Charles Bonnet Syndrome hallucinations involve this interesting phenomenon in which your mind tries to make sense of what it cannot properly see. I started to see weird shit. Nothing scary. Just nothing that made sense. Definitely, nothing that was actually there.

When I discussed this with a friend at work, she was laughing at me. The reason for this was that I seem to see a lot of bunnies and kitties that simply were not there or were plastic bags stuck under trees. I guess she considered that if I had to have hallucinations it’s nice that they are of something pleasant.

But not everything about the sudden change in my vision was anywhere near pleasant. In addition to the excessive problems I was having doing anything vaguely related to reading and close work, I started to have panic attacks.

I started to have panic attacks.

People who know me were sort of surprised that I started with panic. I defended myself to my boss by telling her that they were ambushing me in my sleep. This was true. I could use some mindfulness techniques and distractions, which we will discuss later, to keep the panic at bay during the day but my defenses were down at night. I was waking up to three times a night in a state of pure terror. It was this internal alarm system that made me make an emergency appointment with my ophthalmologist. I had been trying to wait until my regular appointment the next week but I was not going to make it. There was something very wrong. It had to be taken care of immediately.

I was waking up to 3 times a night in a state of pure terror.

Written February 2016. Updated September 2018.

Continue reading “What Do I Do Now?”

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this:

Like this: