Blind World Magazine

How terrifying the prospect of blindness is.

February 08, 2005.
Globe and Mail, Canada.

I learned how terrifying the prospect of blindness is, and pondered the question: who would I be if I couldn't see?

Great news! The vision in my left eye is distorted and, when it gets worse, I'll probably need eye surgery. Seeing this as good news requires a certain perspective.

On a routine visit to my optometrist, he and I discovered that, when I look at lines and letters with my left eye only, they shift and bend. Parts disappear or change shape so radically that sometimes I can't make out what they are. The lines on graph paper look like a spider has been trying to convert them into a web. Within two weeks, I went to see an ophthalmologist and that's where I first heard the words macular degeneration. He was concerned enough to order some high-tech tests.

"But you won't wake up blind tomorrow," he said calmly.

"Will there come a day when I wake up blind?" I asked, trying to sound light and bright.

"I hope not."

I went home to ponder what that could mean. I learned a lot by talking to friends and surfing the Internet. I found out that macular degeneration is a leading cause of blindness in North America -- and that there is little in the way of effective treatment. It's one of those baby boomer things that you hear more about now that our demographic blip is affected.

It comes in two kinds: wet and dry. Dry is more common. Wet is more damaging. And, when it gets to the point where letters don't hold their shapes and graph paper makes you think of spiders, significant permanent vision loss is likely.

"I hope not."

Twice I went to the eye clinic for tests. There, I learned big words. Optical coherence tomography. Fluorescein angiography. Retinal pathology.

I learned that looking at flashing lights and darting shapes makes your eyes tired and sore, and that fitting your face into the machines that look deep into your eyes makes your neck hurt. I learned how hard it is to hold very still and stare into bright lights while your stomach does flip-flops. But those were small things. Over those weeks, I also learned how terrifying the prospect of blindness is, and pondered the myriad questions the prospect of not being able to see raises.

How does a person work up the courage to step out of the house when she can't see what's out there? I know people do -- but how? When would it start to change my life? What would I have to give up first? Could I possibly learn whole new ways of conducting my life when I am old enough to start plotting my retirement? Why do I have to figure this out?

Reading has always been one of the great joys of my life. I remember as a very young reader bragging so insistently to an aunt about my powerful new skill that she handed me a letter written longhand to burst my bubble. My first response to almost any problem, puzzle or interest is to read up on it. Finding a book about something makes me feel I am well on the way to mastering it.

The very worst question was, who would I be if I couldn't see? Who would I be if I couldn't read anything I wanted to, any time I wanted to? Who would I be if I couldn't recognize a friend, admire the tiny parts of a new baby or share a brief smile with stranger? Who would I be if I couldn't do my job? Who would I be if I couldn't knit or cook or send an e-mail message? Who would I be if I had to ask for help to do ordinary things? Who would I be if I couldn't offer help to others?

Everything I think of when I define myself involves being able. How could I be unable to see? Unable to read? Unable to drive? Unable to see the wonders of the world, or the beauty of golden-brown pines needles scattered across clean, new snow?

For that matter, who am I that I didn't realize how terrifying the prospect of dis-ability is? What kind of person fails to see people all around facing obstacles in everyday living?

"I hope not."

It was on my mind constantly. Blind. I had walked into a different world and I could suddenly understand things I'd never really thought about before. Then I got the "good" news about this weird membrane on my retina. It's operable, curable. Immediately I started to feel like my old self again. Fear dropped away and my confidence surged.

Now I'm afraid I'll lose the perspective I acquired. Afraid my good luck means I am going to lose the insight I gained as I contemplated losing my vision. Will I forget the hurdles I glimpsed as I waited to hear my fate? Forget that knowing and understanding aren't the same thing?

I hope not.

Marjorie Bentley lives in Hamilton, Ont.

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