(Names have been changed)
None of us would deliberately hurt our friends. We would not tell jokes about the blind to a blind person or to a relative of a blind person. We would never use derogatory terms like “retard” around anyone who had such an affliction. If we are more sensitive or have experienced feeling the hurt such things bring, we would never use these terms at all.
This sensitivity seems to be lacking when dealing with chronic illness. As I interview well spouses and hear their stories, I am always amazed at how many of them have had the same experience. Theirs are stories of abundant hurt, though always well intentioned. I hope that in sharing some with you, we may all become more sensitive as to what and how we speak.
Rina and Marvin got a phone call from an old friend, Judy. Marvin had been chronically ill for a while. Judy, who lived in another state, called to catch up and see how they were. Over the last year, Marvin had severely deteriorated physically. He had lost total sensation in his lower body and on bad days, his hands showed signs of weakness as well. Throughout his illness, his mind remained intact. Judy had a distant relative who had recently been in a car accident, and though she had walked away from the accident, brain damage had occurred. While Judy was talking about the accident, she began to philosophize on illness. Perhaps she forgot whom she was talking to. The conversation went something like this.
“I can’t imagine how hard it must be, can you?” she said, “I think it has to be the worst thing to have your mind go. It’s so much worse than to have your body deteriorate when your mind is working.”
“I disagree,” Rina said, hoping to awaken just a bit of sensitivity, and remind Judy without being obvious that her husband was on the extension.
“Oh yes! For me it would be far worse,” she continued, “than to have an active mind and a body that doesn’t respond to your command. Well maybe if nothing moved, not even a pinky. Then it might be worse. I just can’t imagine it, can you?”
Neither Rina nor Marvin could respond, as Judy, with her healthy mind and body, pontificated on the pros and cons of different disabilities. Rina wondered how her husband felt, sitting in his wheelchair, being a participant in this conversation. He was unusually silent as Judy rambled on. When the conversation was finally over, both Rina and Marvin felt very depressed.
Michael’s wife had suffered from MS for over two decades. Michael had been by his wife’s side throughout her steady decline in health and the ups and downs of disease. They had the closeness that people share when they go through terrible tragedy together and survive. They felt each other’s pain, sense of loss of the present, and fear of the future. There was nothing about this disease that Michael was unfamiliar with.
One day Michael, received an e-mail from an old friend. She had just read a book about living with MS. She said it explained a lot to her and thought Michael should read it as it might help him to understand what his wife was experiencing.
Jenny’s husband had been chronically ill for many years, suffering a slow but steady downhill loss of function. He was no longer able to walk or dress himself. Jenny ran into Lisa at the shopping center. Lisa was ordering flowers and preparing dinner for a friend. The friend’s mother had fallen and broken a hip. Lisa’s friend had temporarily taken her mom in after she was discharged from the convalescent home, in order to help her. Lisa was hoping the dinner and flowers would help ease the burden.
“I just can’t imagine how hard it must be for her to have to live with someone who can’t do basic things for themselves,” said Lisa of her friend. “Even for a little while. It must be so hard to cope with. It’s beyond my imagination. Yours too, I guess.”
Three different people in three different cities under three different circumstances telling me basically the same story. A story I have heard so many times before. Is it any wonder that many well spouses have come to believe that they and their situation are invisible? Is it any wonder they have stopped trying to explain what they live with?
Is it any wonder that they have come to believe that no one cares? Do you want to change how they feel? Please remember to place your brain in gear before operating your mouth.
(Names have been changed)