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I Know I’m Naked But …

A number of years ago, I was asked by the friend of a friend to speak with a middle-aged man who was losing his vision but very much in denial. When I went to his home, he welcomed me cordially, invited me in, and offered me a soft drink. When he tried to pour it into a glass, however, three-fourths of it missed the glass and spilled on the rug. I learned later that his vision had deteriorated to the point that, when eating, he had to lower his face about three inches from his food to see what was on his plate.

I remember thinking that this was the story of the emperor’s new clothes come to life. Everyone, with the exception of the man himself, realized that he was blind. He, however, thought of himself as only “having some vision problems.”

I’m telling this story, not because it is unique, but because it was the first time I had ever encountered this level of denial. As I’ve learned since, it is far from uncommon when someone is losing their vision.

Coming to terms with the emotional part of vision loss is vastly more difficult than mastering all of the physical stuff you need to learn. The physical stuff really isn’t very hard, but the emotional is, typically, one of the hardest things you’ll ever do.

How, then, can we make sense of what is happening when someone we care about is losing their vision? I think the single best explanation is that of the Swiss psychiatrist, Elisabeth Kugler-Ross, almost fifty years ago. She studied terminally ill cancer patients and hypothesized that they went through certain stages of grief in coming to terms with their diagnosis. In the intervening years, her model has been used to explain other types of loss, and I think it is an especially useful template in explaining what someone is going through when losing their vision.

I’m so sold on its usefulness that, if it were up to me, it would be taught to every friend and family member of someone losing their vision as well as teachers of the visually impaired, vocational rehabilitation councilors, opticians, and ophthalmologists as well. Incidentally, it can be equally useful in explaining what family members and friends are going through too.

Simply put, Kugler-Ross argued that most people go through five stages of grief in coming to terms with loss.

  • Initially, there is an unwillingness, frequently intensely held, to accept the diagnosis. The doctor is wrong. There will be a cure. Denial permits a person to “cling to a false, preferable reality.”
  • When an individual realizes that denial cannot continue – the evidence is too overwhelming – anger replaces denial. Why me? It’s not fair? How could this happen? Frequently, the anger takes the form of lashing out at friends and family.
  • A person seeks to avoid confronting the consequences of vision loss by seeking a “magic bullet.” I won’t have to deal with learning mobility skills, for example, because I’ll get a dog and it will immediately solve that problem.
  • Realizing the changes that will have to be made in their life, the individual is overwhelmed and becomes depressed. It’s hopeless. I can never do it. They realize that the diagnosis is correct. They may retreat from friends and family, becoming sullen and silent.
  • In the final stage, the individual comes to terms with the vision loss and works to resume social relations and adjust to the vision loss.

Not everyone will go through all of these stages. People can get stuck in a particular stage. Sometimes, stages are skipped or occur out of sequence. But, it’s a pretty good bet that most people losing their vision will experience denial, anger, and depression at some point. As I said, this model also is very helpful in explaining what family and friends go through as well.

I think the model is beneficial in at least two ways. First, it is useful in explaining behavior that might otherwise be inexplicable, and, second, it holds out the promise that, when you or someone you care about is mired in denial or anger, it is possible to come to terms with the vision loss and move on with your life. As the golfer, Ben Hogan, once said, “Golf is a game of missed shots. It’s what you do afterwards that matters.”

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These posts may also be of interest:
12 Secrets to Parenting a Blind Child
Secrets to Happiness after Vision Loss
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You’re so Amazing: Behind Stage at the Magic Show

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