macular degeneration, macular, diagnosis Mind Weeds – My Macular Degeneration Journey/Journal

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.

 

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