macular degeneration, macular, diagnosis What Do I Do Now? – My Macular Degeneration Journey/Journal

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.

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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.

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