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I was recently in Vancouver, British Columbia, Canada. I could not get over the magnificent scenery. My eyes kept going to the majestic mountains that surround the city. We took public transportation wherever we went. Public transport included boats that travel in the city as routinely as trains and buses.
While on the boat, I could not stop staring out the window. I marveled that people came home from work every day to this incredible view. Looking around the boat, I was aghast that people were reading the newspaper, engaging in conversation, and doing everything people do on their way home from work, except looking out the windows. How could anyone get so used to this view and lose interest in seeing it, I wondered. But people do get used to what is in front of them every day. They get so used to it, that it becomes invisible.
Invisibility is something well spouses are all too familiar with. After years of coping with a partner’s chronic illness, after years of hospital or nursing home visits, and/or after years of hardships, no one seems to notice. Expectations of the family and caregivers (even of the chronically ill if they manage well) return to normal because the illness has become part of the “normal” rhythm of life in the family and community.
Like the mountains, it is no longer seen as exceptional. The well spouse may often become resentful of his or her invisibility, get angry at having her plight ignored, and upset at the requests made of her. But none of this is malicious or ill meaning. The situation has just become invisible.
Is the family with chromic illness the only one subjected to invisibility? Let’s look at the following stories for a minute and see if we, as caregivers of the chronically ill, do the same thing to others.
Bracha was a well spouse of many, many years. She never got used to being invisible and was resentful of her loneliness and lack of any offers of help when she needed it. Her husband was recently placed in a nursing home and the adjustment was difficult. Worse was the loneliness of Shabbos and Yom Tov and the difficulty of coping with her own medical problems alone.
During this time, Bracha received a call from a neighbor. The neighbor was a teacher and in the summer, she was the director of a day camp that had brought in many out of town counselors to work in the camp. The neighbor first asked about her husband and Bracha told her how depressed he was and how hard the adjustment was.
Then she inquired about Bracha’s own medical problem, which had worsened, and Bracha shared the bad news with her. She then inquired about the bar mitzva plans for Bracha’s son.
“I was going to ask you about Shabbos,” said the neighbor. Bracha’s heart soared, mistakenly thinking that she was finally getting an invitation for Shabbos. “I have to feed the counselors and a family is passing through town and asked to stay with me. I was wondering if you could host them for Shabbos.” Bracha declined. The depression she was feeling worsening. But is Bracha not as guilty as her neighbor? Is Bracha not so involved in her own difficulty that the difficulty her neighbor is having is invisible to her as well? Perhaps there is no comparison to the intensity of the problem. But a hangnail to one can cause as intense pain as a heart attack to another.
Bracha was too involved in her own misery to see that her neighbor was also overloaded. Ten extra people to cook for on Shabbos is not an easy task, and perhaps adding another family to the mix was just too much for her neighbor to cope with. But Bracha couldn’t see this. Her neighbor’s problems had become as invisible to her as hers were to her neighbor’s.
If Bracha could not find the energy and wherewithal to help, then she was smart to decline. Bracha needed to care for herself, and set her own boundaries. She needed to realize that invisibility would be a way of life for her and she would have to accept it. What Bracha needed to decide was if she wanted to treat others to the invisibility that they treated her to?
We each tend to see things through a very personal, emotional filter. When we are in pain, especially great pain that lasts a long time, and we remain alone in our needs. Resentment fills the space in our heart where generosity should be.
If Bracha had gotten more help with her needs, she probably would have been more able to help her neighbor when she had needs. Perhaps we all need to put on glasses that can help us see outside ourselves. After all, a burden shared is so much easier to carry.
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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/the-other-side-of-invisibility/2004/10/13/
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