macular degeneration, macular, diagnosis independence – My Macular Degeneration Journey/Journal

Tag: independence

Sue on Assignment: Independence

Back again and this time I was “invited” to be my irritatingly optimistic self!  Well, maybe not that far, but Lin said there is a lot of understandable trepidation out there and wants me to speak from nearly three years past “legally blind.”

Yes, I am legally blind and, to paraphrase Mark Twain, the reports of my disability are greatly exaggerated. The past three days I have taken three exercise classes, walked the dogs, did all of the laundry, did dishes, made a pot roast (it was yummy, but I take no credit for that. I am at best a basic cook.) and did the vacuuming. I also wrote two psychological reports and several therapy notes and watched about three hours of TV on my iPad.

What could I not do? Drive, see faces at more than two feet and read without assistive technology or my nose on the page. Oh, and open the pickle jar.

Within certain parameters, I have independence, whatever that is.

What is it? The Oxford Dictionary says independence is the state of being independent. (Do you ever wonder about passive-aggressive tendencies in lexicographers?) Independent is the state of being free from outside control, not depending upon others for one’s livelihood and capable of thinking for oneself.  There is also “not depending upon something else for strength or effectiveness.”

I have my own funds. To the chagrin of many around me, I am definitely capable of thinking on my own. Am I free from outside controls? No, I doubt anyone can really say that. Living in society requires we be subject to outside controls. That leaves having my own strength and effectiveness and being able to do for myself. There is a qualified check in the positive column there.

Through the grace of God, great people, fantastic technology and general cussedness on my part, it is going to be a very long time before anyone is hauling me off to a care home.

I am capable of just about everything I need to do and I have support for the rest.

Transportation?  I have the transit company, a near constant frustration but it generally gets the job done.  I have people, some of whom  I never thought would help,  going out of their ways to take me places. I have become a community project!

And no, I don’t think of myself as a huge burden any more (just a little one). Why? Because people want to help and it makes them feel good.

Reading is accomplished with magnification and audio recordings. If you are legally blind, audiobooks can be free.

Seeing faces is a problem. I am starting to get people trained. And again they can be so sweet. I spontaneously gave a casual acquaintance a hug yesterday. She sought me out across the room and was within inches of me so I could see her. People try so hard! Or at least they try if they see you trying.

Somewhere I read people with sight loss are more likely to become depressed if they do not learn to use available technology and if they have additional disabilities. It would appear the lesson is if you use your resources and avoid the debilitating influences you can avoid, you can maintain your independence. It might not look exactly like it did before, but things will be pretty close. You can get there, you can read and you can see close and/or magnified faces. You are on your own with the pickle jar. I can NEVER open those!

Written October 29th, 2018

Go back to the list of “On Assignment” pages

 

 

Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Let Us Try

Happy Monday! Martin Luther King Day in the US so there is no school. I forgot and had my ride scheduled so I had to cancel. Oh well….

Home and doing odds and ends. Lin reminded me it was the end of January two years ago I started on this ‘adventure’ in earnest. I should have given it more thought myself. It is now ski weather here and I have been trying to find ways to the slopes. People don’t like to give me the time of day when I contact organizations.

They imagine being in charge of some decrepit, old, blind woman flailing her white cane as she flies down the slope! Not exactly the case. Many of us are actually very competent and independent given our vision losses.

Vision loss bring up thoughts of skiing? Yeah, sorry. It was right after a glorious day on the slopes that I ‘lost’ my second eye just about two years ago. I was in a tizzy. But keep in mind, I was skiing three times last year (thanks to my husband and the daughter of a friend) and I am going to try to get there three times this year. And if I get there and discover I am no longer capable? I tried.

That is probably one of the things I like to preach about vision loss, or at least my level of vision loss. (You can never tell how you may react if given a greater challenge so be kind to yourself). You never know until you try. There are all sorts of ways to skin the proverbial cat (although I am not sure why you would want to!) and you just may have to try a few of them before you hit upon one that works.

The flip side of that coin is this: if you are a caregiver, friend, spouse, child, whatever to a visually impaired person, give us a chance and let us try. As long as we are not going to cause mayhem or mass destruction, what is the harm? Sure, be there to bail us out if you insist, but let us try.

Now remember, I am not talking about operating heavy machinery – yes, such as a car – but walking, skiing, riding a bike, even things like using the microwave or the washer; I am pretty sure many of us can have those things covered if given the chance.

Our vision loss has taken away some of our independence. Please don’t take away the rest.

When we started this project, I was asked what I thought others could do to help the newly visually impaired. I said it would be to support that person in continuing to be herself. Looking back, I agree with myself.

So I guess my message for our second anniversary would be this: Find ways to be you. AMD has taken part of your sight, not part of your soul. Find people who will help you to remain yourself, foster your talents and promote your interests. If they are not in your life now. Find them.

Remember, you need you and we need you, too.

And now I guess I need to try somebody who will give me a ride to the slopes!

Written 1/15/2018 Continue reading “Let Us Try”

Get Out of That Chair

OK. So I am a noodge. I harp. But you know it is for your own good!

And you also know there is no bigger zealot than a convert. I have sort of lived my life ‘in reverse’. Bookish intellectual before 25, fitness fanatic after. I preach (and preach and preach) exercise because it works.

Right now I am having no problems getting enough exercise in. That was ‘enough’. Not too little like many people I know and not too much like a few others. However, what happens when my vision gets worse?

People NEED activity! AARP did an article on how deadly sitting too much can be. That was the word I used: deadly. We already knew sitting too much can lead to cancer, diabetes, heart problems, yada, yada, yada. Now we know it can hurt your chromosomes, for crying out loud!
Telomeres are the ‘caps’ or aglets at the ends of your chromosomes. Nice, ‘big’ telomeres are sort of protective and are found in younger people. As we age we wear them down. Smaller telomeres mean we are closer to death. Think of what your shoestrings start to look like when you lose the aglets. Those laces are not long for this world.

AARP reported people who sit more than ten hours daily and get little exercise have cells that look to be 8 biological years older than those of their active contemporaries.

I don’t know about you, but I would like to have those 8 years!

And to add insult to injury, a sedentary lifestyle style makes you dumb. OK. They did not say ‘dumb’. They are what I am not: politically correct. That is what they meant though when they said you lose brain agility.

What are the alternatives? You have lost a lot of your sight and you are scared to death to move from your chair. People put everything within reach and leave you there. Fantastic, NOT!

Orientation and mobility (O&M) services are a great thing. Problem is they appear to be as scarce as hen’s teeth. If you cannot get O&M services request a free, white cane and start to practice. Back and forth to the bathroom a dozen times. Rest. Repeat. Have them set your lunch up on the kitchen table and walk there to eat. [Lin/Linda: In the US, you can get a free white cane from the National Federation of the Blind: click here.  In the UK, I’m told you can get a free white stick/cane from the NHS but I can’t find anything about it online.]

Even if you are afraid to leave your chair you can still do all sorts of things to exercise. Side bends, seated jumping jacks, leg raises, etc. Get a doctor’s clearance and go to it. Remember this is both quality and quantity of life we are talking about.

That is pretty much it for his post. Staying mobile and agile (not to mention strong and flexible as well having good endurance AND good balance) is the key to health and contentment, good vision or not. Continue reading “Get Out of That Chair”

First Link on the Chain of Kindness

“From each according to his ability, to each according to his need.” – Karl Marx

I thought that was from the Communist Manifesto. It appears it is not. It is from the Critique of the Gotha Programme…..Huh?….Nope. No clue. I could probably look it up and give you a full critique of the Critique, but that is too much like work and I rather doubt most of you are all that interested.

What made me think of Marx and his quote – other than my mind works in really weird ways! – was a comment Lin made. She said many people in the Facebook group are concerned about their independence.

I was right there with you folks. There are times I am still right there with you. I would love to be able to drive and have all the freedom that brings. However, as my husband pointed out to me the other day, just about the only thing I have given up is driving. I still work. I still exercise. I still socialize. I get the job done with a few new tools and a little help from my community.

Community – Communism. Like I said, my mind works in strange ways.

These days it is not so much I am independent as I am interdependent. Interdependence is the dependence of two or more things or people upon each other. From each according to his ability. To each according to his need. If you think about it, that is exactly the way a community is supposed to work.

The other week I paid for a young lady’s skiing. I wanted to go and she could get me there. Her problem was money. My ride home from school is devout but knows little about the Bible she has started to read. I am not devout, but know more than she about the Testaments. We sometimes do a Bible study on the way home. I need a ride and she wants the information. (Proving the old saying that even the devil can cite Scripture?)

And it does not have to be a direct exchange. Sometimes I ‘pay’ the people doing something for me by doing something for someone else. Passing on the favor is a great way to improve your day as well as the world. You might even want to pay it forward and do something for someone who has never done anything for you just ‘because’.

Start the chain of kindness and be the first link.

Which brings up another thought: I suspect many of you are of a ‘certain age’. I also suspect many of you have done for your community for some time. Don’t forget you just may have a positive balance in your community account. It is alright to occasionally make a withdrawal.

Perhaps what I am saying is, to a certain extent, independence is a delusion. We have all always been interdependent. With a vision loss, you just become more so.

How can you contribute to your community? What do you need from your community? From each according to his ability. To each according to his need. Together it really is possible to maintain lives worth living. Support one another. Take the support you need. Continue reading “First Link on the Chain of Kindness”

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”

I Am Woman, Hear Me Roar!

Dependence: the state of reliance on or being controlled by someone or something else. What a pain in the posterior that is!

62 years – or at least from my early 20s to 62 – I was my own woman. Made my own decisions. Kept my own schedule. Went where I wanted to go. All of that is now changed.

Now there is ‘another country’ being heard from. Or maybe even two or three more. I hate it.

What gives these people the right to tell me – or try to tell me – what to do? My dependence does. I now need them.

I am being given opinions about what I ‘need’ and don’t need to do. I ‘need’ to go to work but I don’t need to go to exercise classes. Oh, really??? You may not feel the need to take me but I will get there even if I have to walk. Please don’t tell me what I need. You don’t live in here. I do.

I am having trouble finding anything much on the web about sudden dependence. The common parlance apparently considers dependence to be an addictions issue! However, one article contained the word ‘power’ and that word rang true.

I resent the loss of my power! I resent having power taken from me and I want it back!

Another phrase that rang true was ‘loss of identity’. This is not me. I have likes and dislikes. I have opinions. If I did not like something before I would get in my car and drive away. Why do I have to stay now? I don’t do things this way!

OK. My resentment can make me a bit of a witch. The people whom I am dependent upon have rights too. They don’t have to help me and, truth be told, they are not the ones taking away my independence. It is circumstance. However, if you don’t want or are unable to help me be myself and maintain my power, say so.

Lead, follow or get the hell out of my way. I want MY life and I want MY identity and I will do what I can to try to keep them. Don’t tell me what I ‘need’ to do! If I fail, I have failed on my own terms.

While I am not in the habit of citing people who have no last name, I found something related written by James D. for www.keepinspiring.me. James’s take on things is that lack of control in your life can lead to depression. I quote him because I have seen the same finding other places. James suggests you take steps to control those things in your life that you are capable of controlling. Even being able to control a few things is helpful.

So I keep on keeping on. I will find ways to be me as long as I can. I will find a way to keep at least some of my power. Dependence? It stinks! Continue reading “I Am Woman, Hear Me Roar!”

Dancing Angels

My husband remains in the rehabilitation center. I continue to try to adjust to living alone as a visually impaired woman. It is, shall we say,’interesting’.

As you know, I have been trying to find ways of increasing my independence and making things easier on my friends, and on me. With that goal in mind, I am happy to say my Amazon Prime Pantry box came. The box was 20 x 14 x 17 inches. I had loaded it up with a fair amount of stuff. Enough it was marked ‘heavy’. It was a bit of a chore to get it into the house.

I was pleased with how rapidly the order had arrived. It only took two days to get here.

Having the box come was sort of reassuring. I may be stuck but I am not going to starve. I am also not going to stink and I can do my dishes. These are all positives in my book.

This morning I got a ride to a yoga event. The event was right across from a Farmers Market so I bought some fresh, local produce.

I have become more healthy-eating conscious in recent weeks. It is roughly akin to being trapped in an elevator and immediately needing to pee. Feeling I am not able to get to good food made me crave it. Too bad I did not have this epiphany when I could drive and so many meals came from the drive through!

Anyway, still trying to solve the good food versus processed food dilemma. I can work on that later. Now that I know I am not going to starve; that is.

The other problem I solved this morning was making bank deposits. I have had two checks sitting for a week. Getting deposit slips was a major event – I had to prove I was me about a dozen different ways. For generic deposit slips; really??? – but they are finally mailing me the deposit slips. If I write ‘for deposit only’ and sign the checks, I can mail the checks in and get them deposited into my checking account.

The customer service guy wanted me to go high-tech. He wanted me to use an app that would allow me to take photos of the checks with my phone and deposit them that way. If you like that idea, go for it. I declined. Every brain cell I have is busy trying to figure out a transportation schedule. I will take on unfamiliar technology when I have a lull in the action. Whenever that might be.

Oh, I also got to the bank machine this morning. I had money but I was starting to get nervous about running out of cash. I took out $50 more than I normally do. Reassuring to know I have a little extra.

I am starting to think this not being able to drive business is going to turn me into a hoarder. How many cans of tuna is enough? How about rolls of toilet paper? Perhaps we have a philosophical question here.

How many angels can dance on the head of a pin? More importantly in my book: what kind of dancing do angels do?

So that is pretty much it for now. It has been a long day and I am slap happy. To review: I have found a way to get food and other grocery items delivered to the house. I can get money to pay for them into my account….without fighting with new technology. Maybe I can pull this off yet.

Continue reading “Dancing Angels”

Accessibility by WAH