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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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Rewind sixty years to 1953.
Television was considered kosher by most and featured the likes of Desi Arnaz, Lucille Ball, Jack Benny, George Burns, Red Buttons, Perry Como, Arthur Godfrey, Clayton Moore as The Lone Ranger, Dinah Shore, Red Skelton, Danny Thomas, Jack Webb as Joe Friday on “Dragnet” and many others who provided great memories.
Yet all are part of one neshamah, planted in rich, verdant soil, determined to grow. May our garden continue to produce a glorious assortment of flowers and trees, each attached firmly to its roots. Our diverse southern vegetation flourishes and grows into different trees, flowers, and fruits, and a rainbow of glorious shades and hues appears. Yet each shoot is rooted in the same soil, stretching its branches and blossoms heavenward in an endless pursuit of growth and connection to the One above.
This past Lag B’Omer, we were blessed to make our first upsherin, where we celebrate our son’s first hair cut. It’s a wonderful milestone that mimics the three years that we refrain from plucking a tree’s first fruits and symbolizes the entry of the child into the world of Torah learning. It’s a clear sign to everyone; this boy is no longer a baby.
Although there are more direct and faster routes to Beer Sheva and Eilat and all the sites and towns in-between, the Basor River is one of the beauties of the Negev that defiantly justifies a diversion.
The importance of death customs has been ingrained in me since birth. When I served as a shomeret for my grandmother, I was instructed not to eat, drink or perform a mitzvah in the same room. In the shock of death, it seemed rather inane to be told it would be considered mocking the dead. My grandmother was gone; she couldn’t do those things because she didn’t exist anymore, a fact that still makes me tear up.
I would have to say that one of the most annoying things about having a newspaper advice column, aside from all these people writing to me and asking for advice, is that they frequently don’t tell me WHY they’re asking.
Rav Yosef Shalom Elyashiv zt”l, who passed away on 28 Tammuz, (July18) this year at age 102, spent all of his days and most of his nights learning Torah. He was the paramount leader of our generation, and inspired tremendous awe and reverence in everyone who knew him. Now, every woman has the stunning opportunity to do something in his memory. A Sefer Torah is being written in his memory and women around the world have the chance to dedicate a letter.
Due to her family situation, it is understandable that she will have more responsibilities than other girls her age, but she would benefit from having some free time and receiving more appreciation for her hard work.
For children, summer means outdoor sports, picnics, and of course, no school! Teachers and students work hard all year long – and everyone deserves a break from education over the summer. However, this two-month break can often have some pretty devastating consequences.
It was only after we celebrated the great news that we were expecting twins that we saw the first sign of problems. First of all, my wife was losing, not gaining weight, even as the babies continued to grow normally. Soon after, routine blood work revealed that my wife was suffering from gestational diabetes.
Rabbi Pinchas Gruman is the new rav of the Minyan at Aish Tamid.
One of the most respected Torah figures in Los Angeles, Rabbi Gruman has been described as “The Los Angeles link in the mesorah of the yeshiva world” by Rabbi Nachum Sauer. As a talmid in Lakewood in the 1950s, Rabbi Gruman received semicha from Rav Aaron Kotler, zt”l, and Rav Moshe Feinstein, zt”l. Soon after, he moved to Los Angeles.
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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