macular degeneration, macular, diagnosis A Human Doing – My Macular Degeneration Journey/Journal

A Human Doing

Moving ahead in time again, I found myself having taken leave of  ….a turn of phrase makes me want to say ‘leave of my senses’ even though that is not how I was thinking when I started this sentence. But maybe I did. People (hello, Lin) told me to pace myself and that this was going to be a marathon and not a sprint, but I am a go-er and a do-er with the proverbial motor in my butt. I do not hang well.  I was out of work and pretty much grounded. I am happiest when I have a project so – curse it – I and my vision loss are going to be my project.

I am a go-er and a do-er with the proverbial motor in my butt.

I had made an appointment with my optometrist originally hoping that something as easy as a new pair of specs would solve the problem. I kept the appointment even though I was not holding out a lot of hope for a ‘spec-tacular’ rescue (sorry, could not help being goofy there).  I got a few things out of the encounter. One was the information that while I thought my eyes had suddenly and inexplicably self-destructed, the problem was actually part of the continuing process of degeneration.

The center red dot represents the macula. Each consecutive ring from the center to the periphery represents another drop in acuity level.

According to my optometrist, the drusen had reached the center of my left macula. She explained the macula is set up like a dart board. There are greater values in the middle where acuity/vision would be a 50. When the drusen reached the center of my macula, I lost my ’50 points’ vision.  Add to that a progression in my right eye and I was up the proverbial creek.

 

 

Eccentric viewing was a skill my optometrist thought I should learn.  Now, there are a number of people in my life who have always thought my views were eccentric, but that was not what she was talking about. Apparently, eccentric viewing is using the intact – but not as finely tuned – cells of the rest of the retina to do the jobs of the macula. Many people with central vision loss learn to read with their peripheral vision. Sweet trick if you can master it. I think I need Eccentric Viewing 101. I have been practicing looking out of the corner of my eye or focusing just a bit above and to the right of what I really want to see. Sometimes it works and sometimes it doesn’t. Apparently, this is going to take more than a couple of days to master.

My optometrist also suggested I wait until the Bureau of Blindness and Visual Services (BVS or BBVS) appointment to pursue low vision services. Since I was – and am – planning on going back to work, there was a chance this organization would help me with some of the expenses of equipment.

Wait. Patience. Really???????? You don’t know me too well, do you?

I had already contacted the Bureau of Blindness and Visual Services, a part of the Office of Vocational Rehabilitation (OVR). I had an appointment set up with the vocational specialist they had assigned me. When I first spoke with my BVS counselor I had warned him I am not a patient person. In fact, I am a doggedly persistent pain. I suggested he give me an assignment. It would be self-defense for him and would give me something to do. My assignment? Get copies of my eye evaluations and put together some samples of the work I had done and that I wanted to return to. Yes. I was on the job.

I warned him I am not a patient person. I told him to give me an assignment and he did.

Meeting with my BVS counselor, I signed the usual mess of legal forms and found out I was going to get three different services. One would be low vision support, one would be technology and one would be ‘habilitation services’…whatever that is. I am hoping it has something to do with lighting.

I would get low vision, technology, and rehabilitation services.  Let’s go!

Written February 2016. Reviewed September 2018.

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