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Working outside the home is difficult. For woman with a young family, it is even harder. Add chronic illness and disability to the mix, and it becomes more then just an extreme challenge. Today, some people with chronic illness and/or a disability can still function in the job market. Still, many well spouses work outside the home as a matter of need. I invite you to follow Maxine as she goes through her day.
Maxine is a special education consultant. Today she has an important meeting with clinicians that will decide the fate of one of her students. It will determine if he continues to be mainstreamed or placed in a special program. Maxine has worked hard with this child. She wants him to stay mainstreamed. How she presents her case will be very important.
Maxine’s husband works for the government. He has struggled to stay in the work force despite his chronic illness. He is confined to a wheelchair, but with some modifications to his work environment, he is able to generally continue working as before. The most drastic change is to their routines. He cannot bathe or dress himself, and so an attendant arrives early the morning to help with this. Maxine must be up and ready in order to let him in.
She then gets her young children ready for school, making sure lunches are ready, homework done, complaints handled and breakfast eaten. These are the normal chores that take place in any household with young children. The only difference is that instead of her husband helping with the children, Maxine must help her husband. She must make sure that he too has what he needs for the day. Today is not Maxine’s turn to drive car pool. The children have been picked up and a bit of quiet descends upon the house. Public accessible transport will be here soon to get her husband to work. Maxine’s mind is racing, going over and over her thoughts about the meeting. She has taken great care in how she has dressed. She knows it will affect how she is perceived as a professional, may help affect the outcome of the meeting. Dressing for success is no myth.
The transit arrives. She helps her husband with his coat, places his books and lunch in his backpack, and puts them on the wheelchair. With a wave goodbye, her mind is back to her presentation. Suddenly, there’s a loud knock at the door. An upset transit driver tells her that a fuse blew in her husband’s wheelchair just as the lift raised it to the level of the bus. Union rules will not allow the driver to handle changing the fuse. She had better come out and deal with it.
As Maxine goes to the bus, she sees her husband on a lift about three feet in the air. With a burnt fuse, the chair cannot move. With a sigh, Maxine stops what she is doing, and runs into the house to search for a fuse. It takes about ten minutes to find one. She then runs out and wedges herself between the lift and the bus. She removes the cover to the fuse box, pulls out the offending blown fuse and replaces it. She can now crawl out from her position between the bus and the lift and her husband can go on his way. That is only after the driver has made some nasty comment about being late on his route because it took Maxine so long to fix the chair.
Maxine reenters her house. Her suit is now dirty and oiled stained, her stockings torn, her hands filthy, and her emotions a wreck. She quickly tries to clean up and change, but there isn’t enough time and she arrives to her meeting late. They have started without her and she feels that they give what she has to say less credibility because of her lateness. She thinks about trying to explain why she is late, but knows it is impossible for others to understand unless they are in the situation. She loses her case.
Her student will no longer be mainstreamed. She is angry, depressed and dreams of a life where there are less needs pulling at her and dependency of adults doesn’t exist. She dreams of a life where she can accept the promotions she’s been offered, fulfill her career dreams, but knows she can’t. To accept them would mean less time at home, more stress and responsibility, and her home situation makes it impossible.
That night, when her family sits down to supper, her husband asks her about her day. He has no idea how the fuse incident has affected it and she sees no reason to tell him. He will only feel guilty for something he has no control over. It is her life after all, and she just has to live with it.
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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/the-working-well-spouse/2004/08/18/
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