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My Turn: Navigating the 'Twilight Zone' of macular degeneration

People have asked me to write a memoir about losing my eyesight. It is not a subject that I am enthralled to write about, but for those who may benefit from my story, I invite you to enter the "Twilight Zone."  

It was a cold and snowy wintry day two years ago when my son was driving me along the Expressway.

“David,” I said, “isn’t it a bit early for trees to have such a profusion of pink flowers blooming?” He looked at me strangely. “Mom,” he said, “the trees are bare. There are no pink flowers. I think you should see your eye doctor.”

I duly made the appointment with my retinologist, who said, “You are not hallucinating. You are not going crazy, but you are experiencing Charles Bonnet syndrome. When the brain is not being stimulated visually, it produces its own images, which is what you see. It will disappear in a few days but may return.”  

The profusion of pink flowers appeared in the fireplace and on the mantelpiece. Alternately, everything could appear cracked and crazed. One day David put down my dinner plate, and it looked as if it were cracked in a thousand pieces. I chased the food around the plate not knowing what my fork would pick up — if anything. Looking up, I saw the dining room wall appeared to be cracked in a network of tiny fragments.

Most people develop macular degeneration as they age. There are two kinds — wet and dry. The dry kind is not serious and can be kept under control. Unfortunately, though, it can change into the wet kind, a serious condition that blurs the vision. That is the one I'm afflicted with.

With it, I can see light and dark and shape but not detail. I can see a shapeless mass, but won’t know who that shapeless mass is until it speaks. I can sit in the living room with my sons and not even make them out across the room. In fact, one day I came into the living room with a heating pad intending to soothe my aching arm, and threw it onto my son Neil’s face as he was lying on the sofa. I never saw him.

My senses of smell and touch, however, are greatly enhanced. I can be in a different room and tell by smell when the broccoli is cooked. I’ve lived in the same house for more than 60 years and as long as objects are placed in the same area, I can immediately locate them by touch.

I was always a well-organized, energetic, efficient multitasker, but being robbed of my eyesight leaves me little to do. I can no longer read, write, paint, cook, knit or sew. Losing these hobbies is distressing. Such simple tasks as buttering toast, putting toothpaste on a toothbrush or zipping up a zipper are frustrating challenges. I can’t write a check or read mail, either. I can no longer view photographs of my husband and sons and the “nears and dears” now gone. Being a professional home economist — and loving to cook — how maddening it is not to be able to use the microwave, the stove or the toaster oven.

Fortunately, we have been able to partially correct this. We have added raised dots to the controls so I can still operate in the kitchen. And though I can’t see if baking cookies have turned golden brown, I can smell when they are done.  Yet, for safety’s sake, I dare not lift a pot of boiling water from the stove or wield a sharp knife. 

For filling my time, the library has audio books — but, of course, I can’t see to read the titles! A phone call to the Library for the Blind will provide audio books. I also have a talking watch provided by the Helen Keller Foundation; I'd be absolutely lost without it! I rely on telephone calls and visitors for the human contact so important in my life.

How do I feel about this? Mad as hell!  Why — when there’s so much I want to do and so much I could do to help others — should this have happened to me? It’s not fair. I hope, however, that my story encourages everyone to look after their eyesight. To this end, I’ve shed a glimmer of light into my darkened world.
Gladys McConnell,


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