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For more than a year now, I have been relating stories from and about well spouses. When these stories reflected a common experience, I wrote about them.
Among the many interviews I did and the stories I received were stories about simchas. These were simchas made in families where one of the spouses or parents was chronically ill. The stories illustrated every gamut of human emotions. They told about appreciating having a simcha, trying to enjoy every joyous moment, and what helped the families and what caused sorrow and anger.
I had put all the stories away to look at for a common thread at a later date. It was only recently, when my son was married, that I saw their experiences reflected in my own.
I’m going to spend the next few articles discussing simchas. I have learned much from others’ experiences and this has helped me handle the events surrounding my own. But first I’d like to share my own experience as a well spouse making a wedding for my son.
My son and his bashert were recently married. My husband had been in the hospital for two years (minus four months when he was home from Pesach till August). He was originally admitted because of pressure sores from his wheelchair, but what should have been a six-week cure turned into two years due to complications. His doctors assured me he would be at the wedding, and things certainly appeared to be progressing in that direction. The doctors were even exploring the possibility of him being home for Shabbos where I would be hosting my 20 out-of-town guests for the three Shabbos meals before the wedding on Sunday.
A week before the wedding, at eight a.m., my phone rang. The nurse at the other end identified herself and told me my husband was suddenly not doing well and I needed to get to the hospital immediately. It took a few moments for my brain to register what she was saying, and what immediately meant. I raced to the hospital and when I got near his room, the doctor intercepted me and took me aside. The first thought to go through my mind was that I was too late. B”H that was not the case. She simply wanted to let me know what was going on and what I was about to see.
The doctor told me that my husband was having trouble breathing and needed to be intubated and put on a respirator. I pushed her for more information and forced her to be more explicit. She told me he had a 20 percent chance of not pulling through and it was doubtful that he’d ever get off the respirator. When I entered his room, I saw that his mind was clear. He understood what was happening to him. He was surrounded with medical personnel. They were getting ready to take him to intensive care. They needed my permission before they could start the procedures.
A week later, my son was married. He had arranged a hook up to the Intensive Care Unit so that my husband could hear the ceremony. (They tell me a man in a coma in the next bed opened his eyes for the first time when the chazzan began to sing.)
We asked our guests to help make the wedding a “simcha b’simcha” (a joyous occasion full of joy) and give to the bride and groom the wedding day they deserved. Based on the stories I had collected and a well spouse friend’s advice, we (like many others before us who juggled tragedy and joy at the same time) read a note from my husband asking that no one discuss him tonight but focus instead on making the wedding joyous and special. And for the most part, people acted in accordance with our wishes. The wedding was beautiful and fun.
Our out of town guests, including my children and grandchildren, have left. The usual low that comes after a simcha, after everyone leaves, has settled in. My husband, as usual, has defied the doctor’s predictions. He has been downgraded to Intermediate Intensive Care, and with G-d’s help, is now off the respirator for half a day. They fully expect him to be completely weaned of it. And so I look forward to many more years as a well spouse.
I am truly thankful for the stories of other well spouses whose experiences in juggling publicly and privately two opposite emotions at the same time helped me through my experience. I look forward to sharing their stories with you in the next articles. I hope they will be as helpful to you as they were to me.
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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/balancing-a-simcha-and-a-crisis-my-story/2005/01/05/
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