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

Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

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Dog and Pony Show

Hi. I got a call from my BVS case worker today. He wants to come out and bring his supervisor to meet me. Apparently it is annual review time and I am to be an example of his good work.

I don’t mind. I can put on a dog and pony show with the best of them. Also my case worker is a good guy and I have no reason not to cooperate. He has been infinitely helpful to me.

My question was “why me?”. The response was “you are using what you were given.” Well, yeah, isn’t that why I have it?

I know better, I really do, but I always think using what you are given is a no brainer. I think “doesn’t everyone do that?” Of course they don’t, silly girl.

Not using what you are given has been a problem for a long time. For those of you of the Christian persuasion, do you remember the three servants and the talents? It’s Matthew 25: 14 -30. The master was peeved at the servant who buried his coins and did not use them to good advantage.

Why would that happen? Looking online I discovered a list of a few reasons students don’t use assistive technology (in the article Resistance is Futile). I think these reasons might apply to some of us older folks as well.

Some of the reason may be poor training or a feeling you are somehow cheating. It may be using the technology seems like too much work or you had a bad experience and technology is really scary.

There is also the grief factor. Loss is tough and some people get willful. Somehow they believe if they give in and use technology and other assistive devices they have admitted defeat. Admitted they are handicapped.

Willfulness can be nasty business. It not only stops you in your tracks but it – admit it – makes you look pretty dumb.

There you are staring at something that will make your life ten times easier and you are refusing to use it! Really????? What is up with that?

Once again, accepting reality does not eliminate the pain but it does eliminate the suffering. I am still going blind. I am just going blind more comfortably and more productively than people who reject help.

My case worker asked me why I have embraced the technology. My answer: the alternative sucks more. (DBT alert. Comparison skill there.)

So there you are. I am to be the client he shows off because I use what I was given. I still think of that as a no brainer. How about you?

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Boot Camp

Waiting for a ride here. Looking through the allaboutvision.com site. Some interesting articles.

All About Vision is a decent site. That is my first point. Second point? Never have nothing to do. Waiting for people can be deadly when you have nothing to do. Third point: be ready to jump up and run when they finally do get there. Make sure whatever you are doing can go away in 15 seconds or less.

So that is my visually impaired lady wisdom for the day. Back to all allaboutvision.com. They have an article saying physical health, cognitive ability and emotional health need to be considered when dealing with the visually impaired. I really want to say “no s***” and label it a no brainer, but maybe people really don’t realize how important those factors are to a good adjustment.

Total human being here. The days of believing in the separation of mind and body are long gone.

Sort of like PLEASE in DBT. Take care of your health. If you don’t maintain your ‘vehicle’ you are going nowhere. There are plenty of data about the benefits of staying fit and strong. Vision loss is plenty. I, for one, do not need to add heart failure or diabetes to the list.

There is not much you can do about exceeding the smarts God gave you, but you need to remember what was given to you is actually a range. Biology sets the range and the point on that range is determined by the environment.

The point you are at can be up to you. Try to function towards the top of that range.

Don’t quote me but I think I read something like 80% of what we learn comes through vision. The flow of knowledge has been blocked for us. We now have to actively work on learning and staying sharp.

Emotional health, read depression and anxiety, can be a serious factor when you are visually impaired. We talked about loss before. Don’t let anyone downplay it. Vision loss is a death. Grief is natural. Depression is not uncommon. The number I read was 30% of people with vision loss are depressed.

Anxiety is pretty natural, too. My panic attacks were not fun but they could have been predicted. The article said that people who only have AMD in one eye are often more anxious because they are waiting for the other eye to fail. Will today be the day? Will today be the end ?

So do these factors truly affect your resilience? Duh, yeah! Therefore, it is time to go walk that mile. Solve that puzzle. Accumulate positives by doing things that make you happy.

This is AMD boot camp. Let’s get prepared! There is a campaign ahead.

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My First 100 Days: Part 2 Denial

February 18th I was in my optometrist’s office. I had the diagnosis from my ophthalmologist but I was looking for another answer. Something simple like needing new glasses would have been nice.

Now, I hate to be predictable, but considering the theory on grief and loss, I was totally predictable. Stage 1: denial. I was not believing my diagnosis and I was especially not believing my prognosis. What do you mean there is nothing that can be done about this?!?! There has to be something! Are you kiddin’ me????!!!!!

Denial, believe it or not, is not a bad thing. It is a coping mechanism. Denial allows you to accept a loss a little bit at a time instead of having it all crash down on you at once.

Denial only becomes bad when it becomes purposeful avoidance or escape.

According to the Grief Healing website, denial and all of the other stages of grief, don’t have a specific time limit. No one is standing there with a stopwatch telling you your time to be in denial is up. “Move on now! Time is up!” Everyone progresses – or not – at his own pace. If it is “or not” however, and your denial actually has you stuck with no forward movement at all, it might be time to see a mental health professional.

The website suggests a lot of acceptance. Facing up to evidence there has been a loss. I looked at the Mayo Clinic site and they say the same thing. Examine what you fear. Jeez, a little hard not to face what you fear when what you fear is a big, blurry hole in the middle of whatever you are looking at!

I am happy to say I probably passed the Mayo Clinic ‘test’ without even studying! Allow yourself to express your fears and emotions. I might have done that a little. (Did you hear me screaming, Australia?). Journal about your emotions? Check! Open up to trusted friends and loved ones (and the cashier in WalMart and the waitress and the random stranger in the street?). Yeah, did that.

There were a few other suggestions from the Mayo Clinic. Think about the possible negative consequences of not taking action (lose my employment, run down someone in the street for examples?), try to identify irrational beliefs about your situation (I will never be able to live a normal life again!) and join a support group. OK. So no support group but 6 out of 7 is passing.

So, denial. It is not just a river in Egypt anymore (d’Nile; get it??) and like d’Nile, denial is good in moderation. Just not too much of a good thing; OK?

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