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Your Normal Isn’t My Normal

(Names Change As Requested)


 


         A person becomes ill. In most cases his/her family will rally and be there for support. The husband will go with the wife to the doctor. He will provide another ear to hear the prognosis, help understand what the treatment will mean and ask questions. He will be there to hold her hand. In this way she does not need to worry if, as so often happens, her fear hampers what she hears the doctor say. Her husband is there. He has heard the same thing. He will help re-explain what is going to happen to her and help calm her fears. She remains the focus of the family. She remains the focus of the doctor and her husband. They will all be there for her.

 

         A well spouse often does not have this. When she enters the hospital for her doctor’s appointment for her illness or newly diagnosed disease, chances are, anyone she meets whom she knows through the many times her husband has been in the hospital, will ask her if she is there because her husband has been hospitalized again. When she replies that she is there because of her own needs, chances are the response will be, “Thank G-d!” (Which, by the way, was exactly my experience when going for a pre-operation appointment). This is not meant to be a hurtful. Totally unaware they have even said something inappropriate, people just continue to focus on the chronically ill person out of habit. This is true even if the (not so) well spouse is sicker than her mate.

 

         Should her husband accompany her to the doctor or hospital and he has a visible disability, he will immediately become everyone’s focus. Nurses, doctors, and people in general will completely ignore the patient (if she has no visible signs of ill health) and focus on the blind, wheelchair bound or in some other way disabled spouse. He cannot be a helpful well spouse, even if he should want to be. He will be forever the sick one. The one who has the needs and gets the help.

 

         That is why many well spouses, when they are sick, prefer to go it alone. Even though they hate going through the experience by themselves, but being there alone, without their ill spouse, is the only way they can be sure to get the attention they need and be focused on in the situation.

 

         Miriam’s husband’s chronic illness necessitated he be in a wheelchair. However, his mind had always been clear and sharp. When, after a mammogram, Miri am needed a biopsy Zuchia wanted to accompany her for support. Miriam was too nervous to drive. They called a taxi. Zuchia’s conditioned necessitated they get a cab that accommodated his handicap. When he called the cab company he always used, all the cabs were busy. They had to wait so long for the cab that they almost missed Miriam’s appointment. With each passing minute Miriam’s stress level rose. She wished she could just get into a cab, any cab and be there already, even if it meant being alone.

 

         Further, because the cab driver knew Zuchia, he left Miriam to fend for herself while he made Zuchia comfortable as he tied the wheelchair in place. The driver, assuming the hospital visit was for Zuchia, wished him luck when he dropped them off at the hospital. The driver pushed the wheelchair inside the hospital letting the door slam shut in Miriam’s face.

 

         Miriam pushed her husband in his chair to her appointment. She navigated the crowded corridors often stopping because her stress and fear made her feel so weak. They had trouble getting into the waiting room, as the entrance was narrow and the chairs close together. This left little room for a wheelchair. Miriam had to start rearranging the chairs in order to get her husband into the room. After a while, the nurse helped and asked Zuchia if he was comfortable as Miriam plopped herself into a chair as near to him as possible. “Does he need anything else?” The nurse asked Miriam.

 

         The scene was repeated in the doctor’s office. Miriam had to push the chair in, rearrange the furniture and settle herself into the space that was left. When the doctor came in, he suggested that being there might be too stressful for Zuchia and perhaps he should wait outside while he discussed the prognosis, ramifications and possible side effects and risks of the surgery with Miriam. Leaving her to deal with all this alone since he had sent her “support” outside.

 

         After that Miriam chose to go to all her procedures and appointments alone. It was just easier for her. It was easier physically and everyone finally focused on her. Seeing her alone in the hospital at one of these times, her rabbi started to ask where her husband was and why he wasn’t with her. He told her he would be speaking to Zuchia and insist that he accompany her for moral support.

 

         He refused to listen to Miriam’s reasons for being alone. He refused to hear her when she said she preferred it this way. He refused to see that what was normal and worked for him in a situation of two healthy adults who became ill, was not workable for a “well spouse” that is sick. It was beyond his realm of experience and understanding to see that going alone was the better “normal” – at least for a sick, well spouse. Being alone, was the only way to get the support that everyone else automatically took for granted was due to the visibly chronic disabled. Chronic illness had stolen this from her as well.

 

         You can reach me at annnovick@hotmail.com

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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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