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Life-cycle events, whether good or bad, bring changes to people’s lives. There are always major adjustments to our lives, with each move to a different place, births, deaths, engagements, marriages, divorces etc. But when these events happen to a family where chronic illness or disability lives, the adjustment is much more difficult. Just coping with and preparing for these events create tasks with which few of us have any idea how to cope, and the insurmountable pressure that is involved for the families. I want to offer the next few articles dealing with these life-cycles events and share stories of the amazing couples that went through them. I’d like to start with a wonderful one – pregnancy.
The joy of having a child is universal. You pray for a healthy baby, look for furniture for him, think of how to decorate a room and dream of the future. What kind of crib and stroller will you buy? When will the baby begin to walk and talk? What will s/he become? And you start to experience a love, the heights of which you’ve never experienced before. But what if you are a paraplegic? What if you cannot see or walk? How will you care for your baby? How will you take him for walks, bathe him, put him in his crib and take him out again? The thoughts that just brought such joy to one mother, may bring terror to another.
Coming to the rescue in my city and in many other cities, is what’s called Rehab Engineering. In your city it may have a different name. It may be a private company or government affiliate. Its job is to solve problems for the disabled community. If there is nothing on the market to deal with your problem, these places will create something that satisfies your need.
Doriswas a paraplegic. She could use her hands, but not her legs. She was confined to a wheelchair. Doris was delighted and fearful when she discovered she was pregnant. She had always wanted to be a mother. But how would she manage the basic care a baby needs? Then she discovered that, not only was she pregnant, but she was going to have twins. Think for a minute about the mental energy many of us put into the choice of our first double stroller. Will it fold? Will it fit comfortably into the car? Doris’first thought was how would she push the baby and in what?
Doris made an appointment with Rehab Engineering. They discussed her abilities and her needs. They closely examined her wheelchair. By the time Doris’ twins arrived, they had invented a playpen, stroller and crib that Doris could easily maneuver around. The stroller was a single stroller that they had modified into a double-stroller. A regular double-stroller would have been too cumbersome and heavy for Doris to put into her car. Both of the twins faced forward. The stroller hooked on to the wheelchair with a special hook. As Doris moved her wheelchair, the twins moved directly in front of her. When she stopped the wheelchair, the stroller stopped since the movement was totally controlled by the movement of the wheelchair.
The stroller was a single stroller that they had modified into a double-stroller. A regular double-stroller would have been too cumbersome and heavy for Doris to put into her car. Both of the twins faced forward. The stroller hooked on to the wheelchair with a special hook. As Doris moved her wheelchair, the twins moved directly in front of her. When she stopped the wheelchair, the stroller stopped since the movement was totally controlled by the movement of the wheelchair.
To make Doris’accessible crib, they started with a regular crib. The first alteration was to put it high on metal legs, so that Doris could wheel herself right under it. Her lap was then under the crib but her body was right next to it. The side of the crib that normally moves up and down was no longer there. In its place were plexiglass doors that opened from the center outward. This allowed Doris to wheel herself to the crib, slide the doors open sideways and comfortably lift her baby onto her lap. The playpen followed the same plan.
There are usually solutions to problems. It’s a matter of finding the right people with the right expertise. That alone is not always easy. It takes diligence and perseverance. Without this help, what should be a happy life-cycle event can turn into a frightening, foreign exercise. But frightening, foreign exercises are a daily part of the lives of the chronically ill and their families. Institutions like Rehab Engineering, turn life cycle events (like pregnancy) back to what it should be – a happy, joyous, anticipation of the future.
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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/life-cycles-and-disabilities/2006/02/22/
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