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October 31, 2014 / 7 Heshvan, 5775
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A Picture Is Worth A Thousand Words (Part 4)

The next two cartoons from the well spouse group I interviewed are almost identical. One seems to me to come from society and one from chronically ill spouses themselves. Perhaps it is the message that society gives us that forms the expectations of an ill spouse. The only one in the pictures, who seems to be objecting to the expectations placed on them, is the well spouse.


I see the box in the cartoon as society’s expectations of well spouses. The role others have decided we should play. Others include, as illustrated in the second cartoon, our ill spouses or perhaps a parent or relative. Anyone who might refer to us as “Dear”. The box, to me, is rigid and inflexible. It does not allow for change. It is being imposed on an unwilling well spouse who is desperately trying to avoid it, even to the point of screaming. The person imposing the box is smiling in one picture. It seems to imply that once s/he is in the box things will be better, at least for those outside the box. The other picture seems to indicate that once you have succeeded in placing the box of expectations on the well spouse, you work very hard at keeping him or her there. The box holder is even jumping on the box in order to keep the well spouse captive.


I spoke to the group about their reaction to the cartoon. Many were surprised to see their feelings illustrated in this way. They were surprised that the cartoonist had picked up on it. Few of them remembered talking about expectations that came outside themselves. Yet, most of them felt it was a very accurate picture of how they felt. They felt trapped in a box of expectations that was not of their making, that they had no say in but could not change. Many of them had been living with ill spouses for more then a decade. They felt the rules needed to be different then in a crisis illness. No crisis lasts 10, 15 or 20 years. Yet here they were, decades later, having the same expectations placed on them as if their spouse had just had his first heart attack after years of exceptional good health. It’s not that those in a crisis have it easier. They just felt that when your life never returns to how it used to be, and you’re always in crisis mode you need to give to yourself. No one else will.


One member of the group saw it a bit differently. She felt the box was self-imposed. They are the rules and behavior we feel are appropriate for ourselves. When I asked her about the look on the faces of well spouses, she told me that it is not something we enter willingly or easily. We may enter it kicking and screaming, but in the end it is we who choose to put the box of expectations on ourselves. To her, the box holder was our conscience, morals and or religious training that helps decide, though not happily, to impose the life we live and the things we do in caring for our loved ones, on ourselves.


Everyone agreed that it was not as much an issue of right and wrong, but more one of what we choose to accept as our role in a terribly challenging situation. The group did feel that if the “box” of societal and personal expectations was not quite so rigid, it would be easier to make changes in care giving that might be beneficial to both the well spouse and the chronically ill. But, most often, any change from the expected norm is dismissed as wrong without even thinking it through. The box is just too big and too hard to break out of.


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More Articles from Ann Novick

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.

Dear Ann,

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.

Dear Ann,

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.

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