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(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.
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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.
Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.
Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.
Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.
Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.
Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.
Printed from: http://www.jewishpress.com/sections/magazine/please-place-brain-in-gear-before-operating-the-mouth/2004/12/15/
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