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I’ve been writing about the joys and heartbreaks of dealing with life-cycle events that occur far from the home of the chronically ill person. I’ve tried to give some insight to what an enormous effort it takes for a person who is chronically ill and his family to make such a trip. The trip itself is only a small part of what must be put together for this family. Once they arrive, the mountainous task of existing day-to-day in a strange place without familiar supports, presents problems and threats that are huge. That’s why, once the effort is made to come the distance, being accommodated by those around us is important. Below are the stories of people who ventured out of their safe environment to share joys and sorrows with family and friends and the accommodation, or lack of accommodation, with which they were met.
When Menucha and Yoni’s son got engaged, they knew they wanted to attend every aspect of every celebration around the simcha. Menucha was chronically ill. She required tremendous assistance in her daily routines. Nevertheless, the couple hired an assistant to travel with them, made meticulous travel plans, spent hours in preparation, and were determined to have a wonderful celebration. The bride’s parents had no experience with disability or chronic illness. They did not understand why Menucha and Yoni were upset when they changed the day of the “vort” (engagement party) to the evening of the arrival of their flight instead of the day after. They had difficulty understanding why the couple couldn’t simply come to the “Vort” straight from the plane.
They had no concept of what it would take for Munucha to change clothes or clean up after the flight. They had no idea what was involved in getting accessible transportation on the ground. In addition, what if the flight was late or cancelled? Changing their flight wasn’t possible, as they had already spent hours with the airlines making sure this flight could accommodate them. The future in-laws tried to explain that the new date was just more convenient for them because of a conflict at work. They couldn’t understand why it was such a big deal for Menucha and Yoni to just accept the change of date and come immediately from the airport.
Finding themselves in a similar situation, Perel and Avigdor spent, not days but weeks, making sure Avigdor’s illness would not deter them from flying in to share in their son’s simcha. They too, were attending the vort and hoped to also attend a family gathering sponsored by the in-laws. They were looking forward to meeting the bride’s extended family and to getting to know their new daughter-in-law and her parents a bit better. They were hurt to discover, once they arrived, that the bride’s family had decided to move the date of the family gathering to a few days after they left the city. It seems they found it too difficult to try and find a place that would be wheelchair accessible and accommodate Avigdor’s wheelchair. It was just easier not to have the groom’s parents around.
When Pesach’s mother passed away, he was unable to get to the funeral. One day was not nearly enough time to put together the plane trip needed in order to get him to the city where his mother had lived and where the funeral was to take place. His illness required too much attention to just pick up and leave without making copious plans. He sat shiva at home, by himself, feeling more isolated and depressed than usual. His only solace was that he knew he would be able to make it to the unveiling. He would have time to put everything he needed in place, and he did. He was shocked when, at the unveiling, his sister complained how she had to handle everything around the funeral herself. She felt very resentful that he hadn’t “made the effort” to be there for the funeral as well.
The bride’s parents did not think about the inconvenience and the thousands of miles traveled by the groom’s family for their son’s wedding, or the difficulty they had accommodating the groom’s mother’s chronic illness. The bride’s father kept complaining to them about the inconvenience he went through having to drive 200 miles during his busiest season at work. The date had been picked by the groom’s family in order to accommodate their many needs, which also involved the availability of an orderly to travel with them. They wondered if the father would have liked to switch with them. They knew they would switch with him in a minute. Being able to simply pack a suitcase, get in a car by yourself and travel 200 miles without needing assistance seemed like a wonderful thing to be able to do, even in a busy season.
Often we forget in our day-to-day rush what a gift it is to simply be able to get into a car or plane on our own power – to go where we want, when we want without needing assistance or special accommodation. After hearing these stories, I may never again complain about the size of the bathroom in a plane. I feel blessed, knowing I can simply get out of my seat unaided, and use it whenever I wish. Knowing what the chronically ill go through, just to be part of a simcha, or a tragedy, I think it behooves us to do all we can to make them feel comfortable and included, even if it involves some inconvenience on our parts.
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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/life-cycle-events-and-distance/2006/03/15/
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