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July 30, 2014 / 3 Av, 5774
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A Picture Is Worth A Thousand Words (Part 1)

A while ago, I was invited to a very different well-spouse support group meeting. Their guest that month, was an amateur cartoonist who was also a member of the clergy. Trained in counseling, he spent the first half of the meeting discussing the feelings of the group: What were some of the experiences they had difficulty with? How did they feel most of the time? What would they change if they could? Experiences were shared to highlight what brought about these feelings. The guest then took a few minutes and came up with the following cartoon. The group couldn’t get over how he had totally captured their emotions in a few cartoons, as they faced life as well spouses.


Above is a picture of a well spouse. The cartoonist called it “Deep Pockets”. The well spouses in the group felt the emotions on the woman’s face totally captured the confusion, pain and unhappiness in trying to deal with all the things they have to endure and yet, somehow showed a determination as well. They also felt the pockets, labelled by the artist, captured what they were dealing with daily. This was a woman’s group, and so all the well spouses, whom the artist met with, were women. When I showed the cartoons to a men’s group they felt it captured their feelings as well.


We then talked a bit about each “pocket.” Some of the spouses had never thought about many of the emotions listed. In fact, one woman noted that some of the emotions listed were gleaned from the stories and hadn’t been mentioned specifically at all. Desire was one such example. They felt it was open ended enough to range from desiring a different life and different history (one without illness) to other forms of desire, of which they chose not to speak. They commented that some things were just too painful to put into words. But, they definitely felt that desire had a rightful place among the pockets.


Aging was another pocket that the artist captured. No one remembered talking about aging per se, but the sense of life lost, never to be relived differently or recaptured, was certainly reflective of their feelings. They wondered how their lives would have gone if chronic illness had never come into their homes. Some felt they would have divorced, if the illness hadn’t changed everything. Others felt their lives would have been more full of joy and happiness.


Loneliness was a scenario that had been touched on, literally, in everyone’s stories. That was also true for worry, as it was a shadow that was with them always. Worry about bills, their own health, their spouses deterioration, the future and on and on. Humor surprised most of the support group, until the artist reflected back to them, how much they laughed that night and how much it must be a coping mechanism in their lives. Or, he thought, perhaps humor was a relief that could only surface in the safety, confidentiality and understanding that a support group naturally provides. Anger was clear, but identity was not. He told us that the stories had reflected to him, a confusion of identity: wife and nurse, caregiver and our own need to have someone to depend on, parent and child, spouse and custodian of basic needs (feeding, dressing etc). Needing to assume the role of everyone and do everything a home needs, was something everyone identified with. And so, the expectation, necessity and demand to be a “Jill of all trades.” Embarrassment was a bit more difficult, as we all began to realize how much of what we do, what we are forced to do, the behavior we observe every day by ourselves, by our spouses and by our very situation, is often embarrassing to us.


I felt an immediate bond with these woman. I was overwhelmed by their honesty with strangers (the cartoonist and myself) and their openness to face emotions that they had hidden for so long and were forced to be reflective of that night. I hope that sharing it with you furthers an understanding of what well spouses deal with. I am also sure that no matter what your situation may be, there are parts of this drawing that you too can identify with.


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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.

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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