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by by Ann Chiappetta, New Rochelle, New York
I’ve been living with progressive vision loss for almost 20 years, and the shock of diagnosis is no longer an issue. I’ve succeeded in attaining my personal and professional goals. Life is good--if only it were that simple.
The last few degrees of vision are leaving me. I try hard to adjust gracefully but I don’t always feel like I’m succeeding. I still get angry and still want to keep at least a little bit of vision, even a bit of light perception. I pray for it but I don’t really know if it will happen.
I have to be prepared for the worst--that one day, very soon, I won’t even be able to detect light. What will it be like? Will I need to start taking melatonin? Will my eyes still be pretty? Will I have to start wearing dark glasses all the time? I’m not sure what to expect, after all these years living life with five degrees of periphery. Now, with less than two degrees remaining, it feels like a time bomb--a constant pressure that has been significantly affecting my mind and spirit. It’s all I’ve been thinking about--I can’t seem to get away from it. I wake up, knowing there is less vision. There is no consoling me, no one knows what to say, and I don’t really express the fact that I’m petrified.
Five years ago I woke up one day and realized I don’t see color anymore. A year after that, when I attempted to go out after dark, I began to get dizzy. Also during this time, I went ice skating and experienced vertigo on the ice. I attributed this to no longer being able to ground myself visually. I panicked every time I went out in the dark, never went ice skating again, and avoided all activities that made me feel unbalanced or dizzy. The retinal specialist confirmed that the optic nerves in both eyes were dying, and it would result in any number of side effects, including what I was experiencing.
When the instructor at dog guide school announced our night walk, I was a wreck. Was Verona going to be able to sense how scared I was? Would I screw it up by not being able to trust her? I envied the "totals" as they never felt the vertigo I did.
When I left the van for our night walk, the instructor told me to relax and follow my dog. The first block was tense. When we turned the corner, got into a groove, and went into town, around the block, and back to the van without incident, I realized I was hardly breathing. My hand was cramped from gripping the harness handle so hard. I was so relieved when it was over that I almost cried.
Since then, I’ve tested myself, knowing Verona would never put us at risk, no matter what time of day or night. But the vertigo hasn’t gone away, even though the anxiety is much more manageable.
What helps is the action of my hands on the keyboard, writing down the guts of what’s really going on in my head. I guess I’m grieving again, experiencing, again, the complicated grief attributed to progressive vision loss, just like in the beginning.
My kids and husband say they forget I’m blind because I do so well. Those comments aren’t comforting because they lull all of us into a false sense of security. When I do need help, trip over something that shouldn’t be there, or ask for the jelly jar to stay in the same place in the fridge, I meet resistance. This results in my feeling as if they are still in denial. I have to keep struggling to live in the land of the sighted, even in my own home.
I'm not asking for blind Utopia, just a bit more understanding and accommodation. I know I live with three other people who also want to do things in the most logical way, but sometimes we are at cross purposes when it comes to how we want things in our home, like the jelly jar.
I have never felt the need to control my environment as strongly as I now do; it makes sense psychologically, though. I can’t control what’s happening with my vision, but I can control certain aspects of my own little piece of the universe. I think this is what will help me get through the final plunge--the last degree.