web analytics
April 24, 2014 / 24 Nisan, 5774
At a Glance

Posts Tagged ‘MS’

Converting Crushing Experiences Into Wisdom And Hope

Wednesday, February 3rd, 2010

Most of you, my dear readers, are aware that many moons ago I was privileged to establish Hineni – the first kiruv (outreach) – movement, with the exception of Chabad. However, what many of you may not know is the extent to which Hineni mushroomed throughout the years and how it has expanded its activities to include many areas of outreach that range from beginners’ Torah classes to in-depth study of the Talmud, from small tots programs to shidduch introductions, from young couples to parenting seminars, from Shabbatons to High Holy Day Services, and from in-house to office and home study classes, to live webcasts that reach Jewish communities throughout the world.

These multi-faceted programs are, Baruch Hashem, conducted by my own children. My sons, as well as my daughters, are equally involved, and each, in his or her own unique way, has contributed to this phenomenal achievement that reaches the hearts and souls of our people.

Recently we celebrated our annual Women’s League Luncheon, and among our honorees were some spectacular young mothers who study Torah with my daughter, Slovi Wolff, author of, “Raising a Child With Soul.” As a result of the classes, these young women have illuminated their homes with the light of Torah and are imbuing their children with the spirit of our timeless heritage.

The following article is a transcript of the speech that one of our amazing honorees, the distinguished mayor of her town, delivered. I share it with you because it demonstrates how having Hashem in your life can enable you to confront even the most devastating challenges and convert the most crushing experiences into hope, strength and wisdom. I believe that in our turbulent society, this is wisdom we all need to absorb.

Good afternoon and thank you to the whole Hineni family – all of the people that make these great events and Torah classes in our communities happen. Thank you for touching our lives.

When I was a junior in college, a friend of mine was diagnosed with Multiple Sclerosis and I wanted to do whatever I could to help her, so I decided to start an organization to raise money and awareness for people with MS. We had a few parties over the course of a year or two and the money we raised went into a large brown paper bag that sat in my bedroom.

It sat there for a long time. Until I was 22, when I was sitting at my desk at work and felt one side of my body go numb. I went to the chiropractor thinking it was a pinched nerve. It was not, and within the year, I myself was diagnosed with MS. I immediately thought back to the brown paper bag and realized that I had misplaced the money that we had raised for the MS charity. That moment I wrote a large check to the National MS Society.

G-d sends us messages in funny ways, middah k’neged middah – measure for measure. I hadn’t fulfilled my commitment to the charity, and now I would learn first-hand how needy it was. I was embarrassed that I was so irresponsible. I quickly learned the power of Tzedaka and the lesson of being a good fiduciary of other people’s money. In fact, it’s one of the most important things that I do as a mayor.

I was obviously devastated when my diagnosis was made. I was only 22 years old and, until that point, I thought I was blessed. 1) I had thought of myself as graceful, but now I didn’t know if I’d one day be unable to walk or dance or see. 2) I had a top Wall Street job – a job that fed on adrenaline, stress and intensity. I had spent my life building toward this career and now I would have to consider giving it up because MS is triggered by stress and fatigue. 3) I had always dreamed of having a big family of my own, but now I wondered if anyone would love me since I was so “imperfect” – and would I even still be able to have kids with MS?

At 22 and living on my own, I wasn’t religious/practicing. I had grown up traditional, gone to yeshiva all my life, but the person I was dating at the time wasn’t supportive of my keeping kosher and Shabbat and I just wasn’t strong enough at the time to push the issue. But after I was diagnosed, I wondered if G-d was still watching over me. How could it be if such a terrible thing could happen to me?

It was around that time that I had a conversation with my grandmother who, Baruch Hashem, is here today. My grandmother (I call her Bubby) is Orthodox and also a survivor of the Holocaust. She was sent to the gas chambers in Auschwitz, but they malfunctioned that day. Her parents, siblings, cousins and friends were murdered. Some people who survived the Holocaust turned away from G-d after the war. In a quiet moment, I sat down with my grandmother and asked her how it was that she was still religious after going through such a torturous experience. And she said to me, “Honey, I lost so much in the war, I couldn’t bear to lose G-d, too.”

Fast forward to today: I continue to fight my disease aggressively and thank G-d feel terrific… I found my husband – truly the man of my dreams. I like to say he has a Wall St. Journal in one hand and a Torah in the other. I have, thank G-d, delicious children. I have a very spiritual and religious home and have the distinct privilege to teach my children to recognize G-d’s blessings at every turn.

Most people I know do not know that I have MS. This is the first time in the 10 years that I have been living with MS that I am publicly sharing it. It was extremely difficult for me to write this speech. I am thankful and clearly see the hand of G-d in the abundance of therapies and medicine available for MS. I no longer feel abandoned. In fact, I see the tremendous blessing G-d has brought my family and me in many ways through my diagnosis.

Before – I was too busy to appreciate the people and blessings around me. I figured I would have time to focus on it some day in the future when I was done building my career.

I now take no day for granted. I now always make time for my family and friends. I always try to make the most out of every moment I have with the people I care about – to tell them and show them how important they are to me. No regrets. None of us have a guarantee of what tomorrow will bring. It’s a banality, but I now know that I have to live each day to its fullest. We were all created by G-d with a special purpose.

I now know that I have to be laser focused with the healthy time I have to ensure that I do what I am meant to do here. Whether it’s helping friends get through difficult situations – like I did …Whether it’s donating money to medical research – a cause that might not have been so important to me if I hadn’t been diagnosed with a neurological illness.

I know I have to be involved with organizations like Hineni that help us focus on what’s ultimately important in life despite all of our hectic schedules – another lesson I had to learn the hard way. The test I now apply to every day of my life is, “Am I using whatever skills and resources I have to achieve what G-d wants me to accomplish here?”

As you all know, I am now a mayor. I did not seek this position out. I am an accidental mayor. Most people who are mayors first aspire to be a mayor. Next, they become a trustee of the village board and then rise to the position of deputy mayor before they finally run for mayor. They rise up slowly through the ranks. In my case, when my family moved to my town, there were a lot of problems. I would often return from board meetings and cry to my husband. One day, I finally said to myself, “No more crying. I’m going to fight them.”

Over a three-year period, I became an expert on government and citizens’ rights. Through that knowledge, I, along with a small group of residents, got organized and started a civic association so that no one would feel helpless again. We successfully fought some of the more problematic policy issues and eventually replaced the mayor and two trustees with our candidates. That story is a speech unto itself….

At the time, it was not obvious to me that I should run for mayor. Remember – my test for myself every day is: “Am I doing what G-d means for me to do here?” The Torah teaches us “Aseh lecha Rav – Make for yourself a rabbi – a guide.” In this instance, I called Slovie and asked for her guidance.

Slovie asked me three questions when I asked for her advice: 1) “Is my husband OK with it?” – Yes. 2) “Will it make me a less patient mother?” – Doesn’t everything? 3) “Do I feel that I have the skills to be successful in this position?” I walked her through my resume and assured her that I could handle the finance, strategy, and the legal aspects of the position. But ironically, we didn’t talk about the most important skills that have informed my tenure: Torah values.

Not a day goes by that I am not tested by the wrong path. There are opportunities to become arrogant, to hear only one side of a story, to be catty and gossip, and to lose my cool when someone is incredibly difficult and nasty. But instead, I am constantly guided by the importance of humility, empathy, encouraging people to be good neighbors and avoid strife, and the pursuit of truth and justice. So, yes thankfully, Slovi, armed with these Torah values, I do feel I can handle the position.

Pirkei Avot – Ethics of Our Fathers, teaches, “Ba’makom she’ein anashim, hishtadel lihiyot ish – In a place where there are no men, strive to be a man.” In other words, when no one is leading or standing up for truth and justice, you stand up. We all have to do this. There’s a lot of garbage in this world – we see it every day in the media and even in our own lives. We must take leadership in our own homes and distinguish between right and wrong for our own families, and we must do the same in all our interactions, be they private or public, personal or general, we must stay the course.

There is a teaching that women have a special power to invoke the Name of G-d and bless people. I’d like to channel that power and leave you with a blessing: “May G-d grant you the strength to be leaders in your own lives and not wait until tomorrow to become who Hashem destined you to be.

Thank you for this honor.

Thoughts On Shidduchim From The Families Of The Chronically Ill: – Responses

Wednesday, June 3rd, 2009

Last week I shared a letter from a concerned well spouse whose daughter is having problems getting dates because of her husband’s illness (Multiple Sclerosis). She indicated that there is an assumption that her house is depressed because of the illness. I asked for comments and suggestions from those who have experience with this situation. Below are responses that every shadchan and parent without experience with chronic illness should read.


 


Dear Ann,


I just wanted to share some thoughts on living with illness and the far reaching consequences or as I see it, benefits especially when it relates to children of a parent with a chronic illness.

 

            Many years ago, when I was holding by the shidduchim phase of my life, I was a successful bachur, who learned in the finest yeshivos. I came from a wonderful, healthy family. Needless to say, I had a long list of girls to choose from. One particular girl stood out of the crowd, (ok, she was extremely beautiful and intelligent) except that her father had MS and had been a paraplegic for almost her entire life. His disability caused the family a myriad of inconveniences.  For example, his having to sleep in a separate bedroom, needing a special van, ramps in the house – plain and simple he just wasn’t what I had in mind for a shver (father-in-law).   

 

These details were particularly disturbing to me, as I worried about genetics, and at that point in my life it really bothered me just because it wasn’t normal in my world.  More importantly, how would it look at the chassanah with a wheelchair going down the aisle?  What would people say about us?

 

            My rosh yeshiva really helped me envision the hidden beauty, chinuch, and rare middos that grew from my wife’s (now of 11 years) upbringing. He told me she had seen and experienced firsthand, the unconditional devotion, unending care, and superhuman emotional strength, which were the utter necessities of coping and living with a paralyzed spouse. This devotion and chesed were embodied by her mother and had been successfully inculcated in this girl’s very being.

 

            Coincidentally, (or not so, as Hashem has his ways) as a very newly married couple, we went through a prolonged and extremely devastating situation (that had nothing to do with illness) which tested the limits of our sanity and ultimately our future together.  For a time our viability as a couple was highly doubtful.  In fact, some of my “friends” encouraged her to ask for a divorce. Baruch Hashem she never considered their suggestions.

 

            I can only imagine where I or our growing family, ka”h, would be now if I had just married “a normal girl with a normal family “

 

            The intense need to measure up to others, takes away life’s greatest gifts and opportunities. Those missed chances are reserved for the select and special few who have the sense and vision to look beyond outward appearances.

 

Don’t chazal implore us not to “judge a book” or “look at a barrel “?  They are not misleading us. They were making sure that, among other things, the tza’ar anyone experienced, and grew from does not go to waste. Rather it is gifted and passed onward to those that are “zocheh” to see, appreciate and flourish from it.

 

            So to any parent whose child is having difficulty finding a marriage partner because of a sick parent, I say the following: Your children have a gift. It took many years of patience for them to learn from you as a well spouse, and that gift can’t be shared with just anyone. It may take more patience until he or she finds that special person, but Hashem has already made sure you have the virtue of patience. He always supplies the answer before the question is asked. Hatzlocha.

A very lucky husband


 


  


Dear Ann,

 

My son married a girl with a chronically ill mother. When theshidduch was proposed I am proud to say it was never even an issue for us. It didn’t bother us one drop. In fact we have tremendous admiration for her parents.  Clearly her father had to be a very special person to marry a woman who was ill, knowing her condition would only worsen as the years passed.  The sensitivity and lack of selfishness it builds in a person is truly admirable. 

 

That being said, I have to be honest – we did know that the mother did not have a genetic illness. If it was genetic…I don’t know.  But now, there’s genetic testing for some diseases. If the young man or woman does not have the gene there is no chance of it being passed on.

 

However, I think if it had been genetic, we still would have gone through with it, as my daughter-in-law is a great person.  


A mother


 


I would appreciate hearing from shadchanim dealing with this issue.

 

More responses next week.


 


You can reach me at Annnovick@hotmail.com.

The Children Of The Chronically Ill And Their Battle For Shidduchim

Wednesday, May 27th, 2009

Dear Ms. Novick,

 

I would like to thank you for your thoughtful column. The information you provide has helped me through the ups and downs of living with a spouse who had MS.

 

There is one issue I have not seen addressed – shidduchim of children whose parent has a chronic illness. My beautiful, intelligent daughter has been unable to get a date because, “your dad has MS.” I guess people take that to mean, “Your home is depressing.”

 

Do you know anyone or any resource to help our children? I am at wits end. Any suggestions would be greatly appreciated.


A Well Spouse


 


 


 


Dear Well Spouse,

 

This is an extremely important issue and I thank you for suggesting it. I am glad my articles have been helpful to you.  I hope, with Hashem’s help, I can assist you in this matter as well.

 

You seemed to have raised two issues here. The first is the supposed detriment of dating and, potentially marrying, a person who has an ill parent. The second is the depression that is assumed to accompany the situation.

 

For many people, dealing with illness is something they will go to any lengths to avoid. And so, if a parent is ill, whether that illness may have a possible genetic correlation or not, is reason enough for some parents and shadchanim to negate a potential match. Yet if we look around us, we all know couples who are suffering from terrible illnesses with no family history of the disease. We also all know many people who have a disability or chronic illness whose children and grandchildren have no such problem.  ”But why take a chance. There are more fish in the sea,” is the response I have heard from many parents who refuse to hear a shidduch with a family who is coping with illness.

 

            Using a microscope to examine the history of a potential spouse has become the norm. Parents of “perfect children” want only “perfect matches” for their children. But which of us truly have flawless children, and how many children really grow in homes where they have never experienced problems?  And is a child who has never had to deal with adversity better prepared for the world a young couple must face than one who has? Have the concepts of bashert and bitachon been totally thrown to the wayside when it comes to marrying off our children?

 

We all wish for our children joyous, anguish-free lives.  But is that really even possible? No one goes through life without facing difficulties – some illness, disagreement or hardships. It is the people who can handle difficulty, who aren’t scared off at the first sign of a problem that handle adversity more easily and efficiently and get their family through it relatively unscathed. And those are often the people with experience. They are often the children of a parent with chronic illness. 

 

We already do genetic testing for Tay-Sachs disease and, I believe nine or 10 other genetic diseases, through Dor Yeshorim. Perhaps it would be a good idea to extend this, if possible, to other diseases that have a known or suspected genetic component upon the request of families dealing with these illnesses. This might give those children of the chronically ill a better chance at dating, and not be eliminated because of what might be in their genes. Further, it will help us remember that not all illnesses have a genetic base.

 

Living in a home with illness can certainly lead to depression. But to assume it does in all cases is ridiculous. Today, depression can be handled successfully in many ways and does not have to be a lifestyle. When other methods fail, antidepressants can help us cope with life’s difficulties.  While I am not advocating their indiscriminate use, they have their place when needed, as does all medication that alleviates symptoms. If there is long term or short term depression in your home resulting from living with illness for many years, medication is definitely something to discuss with your doctor. If your home is depression-free, make sure to ask the references you give to shadchanim to mention that your home is a comfortable, happy place in order to offset the assumption that it is the opposite, even before the question is asked.  This is especially important when people are assuming that depression exists wherever there is chronic illness and may not even ask for verification for what they assume is true.

 

I would be grateful to hear from my readers about their thoughts and/or experiences when it comes to dating a person with an ill parent. My suspicion is that those who have married children of the chronically ill have a lot to teach us and share with shadchanim. I would also like to hear from shadchanim and get their point of view on setting up children like the daughter of the letter writer. 

 

Any shadchan or person wanting to contact the writer of the letter concerning her daughter can do so through me. I will happily forward your ideas.


 


You can reach me at annnovick@hotmail.com

Modern Day Heroes (Part I)

Wednesday, March 11th, 2009

We live in very scary economic times. Many people have lost their jobs and are having difficulty finding other ones. This is causing families to lose their homes, unless they can find new means of making money in order to pay their mortgages. Retooling and leaving professions or jobs is difficult for everyone. Well spouses and the working chronically ill have less flexibility than most, as they are limited by their illness or the care-giving responsibilities.

 

Despite anti-discrimination laws, most employers will find a reason for not hiring the chronically ill or the caregiver; worrying about excessive absenteeism and fearing dealing with an illness they don’t understand. Psychologically it is very difficult for everyone whether limited by family illness or not, to search for a job after years of being in another profession. It challenges your sense of self, your ego, your resilience and can be one of the scariest things you’ve done in decades. But focusing on supporting your family and making those difficult changes even if it means a very different way of earning a living has, to my mind, made heroes out of many. I’d like to tell you about some heroes I have met (*names changed).

 

Yossi* had been a carpenter for years. But as his MS progressed so did his loss of equilibrium.  He could no longer keep his balance when working on bridges and buildings. Working with power tools was becoming dangerous as well. He had no choice but to leave the profession he loved and had trained for years. Going on Government disability was an option but the reduction to his family income would have been so great they would probably have lost their home and barely gotten by, even with his wife taking a second job.

 

It took months of rejection but finally Yossi got a job as a Teacher’s assistant in a class for mentally challenged teens. As the disease was beginning to affect his memory, Yossi began carrying a notepad with him to write down everything the teacher asked of him. As the weeks progressed so did the disease, but Yossi was determined to hold on to his job.

 

With each advancing deficit to his brain and body, he was determined to find ways to get around it and not let it affect his job performance. Yossi still has his job. He lives in fear ever day that his disease will progress to the point that he will no longer be able to compensate for what he is losing and will be dismissed. He showed me the many notepads he had filled in order not to forget the teacher’s instructions. During the workday, he consults his notes several times an hour. It is tedious and it is depressing but Yossi is determined to keep this job and do it well. To date, he has done an exemplary job. I see him as a hero.

 

Nathan* was a Pulpit Rabbi. He loved his shul and loved everything involved with being a Rabbi. But recently, his shul had to close their doors. The neighborhood had changed, people had left the community and the lack of funds finally took its toll. Nathan found himself jobless after almost 20 years. While looking for a new job he advertised in the local papers and did funerals and unveilings and for anything else he was qualified, in order to support his family.

 

Undeterred and determined, Nathan was finally able to get a job as a teacher in a new experimental program for difficult children. He accepted the position and went about it with the same enthusiasm he had when he was in the pulpit. However, after a year the program lost its funding and Nathan was jobless once again.

 

Nathan never felt that any job was beneath him. He is now a “shadow” for a severely handicapped child. He has gone from Pulpit Rabbi to changing diapers on a teen in two short years, But Nathan told me how grateful he is to be employed and still provide for his family. Always smiling when he talks about this “sweet kid” he is helping, he is ever enthusiastic about his work. To me, Nathan is a hero.

 

It is so difficult to reinvent yourself. Yet these heroes have not only willingly entered this new phase in their life because they put the needs of their family over their own needs, but they have done so in good spirits and with an open heart and mind. Perhaps their attitude is somewhat responsible for their success.

 

More stories of modern day heroes next week.


You can reach me at annnovick@hotmail.com

Men As Caregivers

Wednesday, March 4th, 2009

I have often written my column about women and their experiences as caregivers. It was not my intension to exclude men, however most support groups I attended were either entirely or mostly made up of women. So naturally, I tend to see things from a woman’s perspective. Recently however, I have noticed that men are beginning to appear, though in small numbers, at some of these support groups.  That may be attributed to the increase by 50 percent of the number of male caregivers between 1984 and 1994. And today one third of caregivers are men. What a sharp contrast this is from over 30 years ago when one MS caregiver study stated that when women are diagnosed with MS, 90 percent of their male caregivers leave.

 

Societal morays may have contributed to this change. We are living longer and the inevitability of long term illness increases with our longer life span. Also, over the last 20 to 30 years, the traditional male and female roles have become blurred. More women are working outside the home and more men are helping with cooking, cleaning and child rearing.  Therefore, the bridge to becoming a male caregiver is not as foreign (or maybe as frightening) as it once was. A smaller family size has left us with less extended family to call on for assistance and often today, immediate as well as extended families no longer live around the corner or even in the same state or country.

 

            And so with their numbers as caregivers increasing, men are beginning to suffer from many of the same emotional experiences as women. Depression, lack of time for themselves, juggling too many roles at once, lack of self-care resulting in their ill health and the tremendous cost of chronic illness are now part of the lives of male caregivers as well as females.

 

            However, it seems that women are more likely to seek help through support groups and counseling than are their male counterparts. Even those males, who do avail themselves of support groups, may react, share and cope with their experiences differently than woman. In some support groups I attended which started with both men and women, the participants decided to separate by gender, feeling their needs would be better filled if they had shared with only people of the same gender, in the same situation.

 

              There are some other positive and negative affects that seem to be unique to the male caregivers I interviewed. In positive ways, these men seem to get more support and for a longer period of time than woman in the same role. This support is most likely to come from women in their community, who the men felt see them as less capable than their female counterparts. Still support is support and it is very welcome. 

 

   Males also seem to get more praise when they become caregivers and are even seen as “heroes” when they step up to caregiving chores as opposed to women who are expected to assume the caregiving role and may be seen as “uncaring and self-centered” if they choose not to. On the negative side some of the men felt the role of male caregiver was looked down upon on occasion, particularly by other males who were not caregivers.

 

             A male asking his boss to leave work early in order to take his chronically ill wife or parent to a doctor may be seen very differently than his female peer who may make the same request. A 2003 study at three Fortune 500 companies found that men were less likely to use employee-assistance programs for caregivers, because they feared it would be held against them.

 

            Some male caregivers also felt that there are some practitioners in the medical professions who prefer to deal with female caregivers as opposed to males. And then there is the whole problem of the person you are caring for. A son caring for a mother and the intimacy that may be involved in changing clothes or bathing is very awkward for everyone involved.  It is further complicated by societal norms that see it as less acceptable for a man to care for his mother in this manner than for a daughter caring for a father.  Yet, both are extremely difficult situations for the parents and children involved, no matter what their gender.

 

             Lastly, as frequently as female caregivers become ill – and many predecease their loved ones – according to the Alzheimer’s Association 60 percent of male caregivers will die before the patient they are caring for.

 

            Caregiving – whether it is a male or female assuming the role – is a tremendously difficult job. It is essential that all caregivers put emotional and physical supports in place for themselves, with as much care as they do for their loved ones.

 

    You can contact me at annnovick@hotmail.com   

Being A Well Spouse Is An Emotional Paradox

Tuesday, September 25th, 2007


         As the years go by, and your spouse gets worse, and your life gets harder, well spouses often live with emotional paradoxes. Craving a normal life, they want the illness to go away. Acutely aware that it never will, they constantly walk the tightrope. On one side is the love for their spouse. On the other side is exhaustion, loneliness and a desire for a life without illness in it. Both sides have a tremendous pull on the well spouse’s desires. Both are in conflict with each other.

 

         These conflicting emotions can often result in tremendous guilt- guilt that results either when the illness wins and when it does not. It may be very difficult for anyone who hasn’t dealt with chronic illness and its fallout year after year to even begin to understand this emotional paradox. It may even be shocking to some. But for those who are well spouses, the conflicting emotions and the guilt that tags along with having those feelings are an everyday occurrence.

 

         I recently saw a poem in the Spring/Summer 2007 edition of Mainstay, the newsletter of the Well Spouse Association. Rebecca Otterness, a well spouse, wrote it. I thought it captured the ambivalence and conflict that prolonged illness forces on well spouses and their families. Apparently, judging from the responses to the poem, so did many other well spouses.

 

A Caregiver’s Paradox

 

         Crying


         He is in a Nursing Home now, I’m crying


         Crying because he got sick pneumonia


         Crying because he got well


         Crying because I love him so much and someone else is taking care of him


         Crying because I am so tired.


         I will cry if he dies, and I am crying because he didn’t;


         I am crying because he has a very poor quality of life; but do we need more in life than to be loved by our spouse and by our G-d?


         Crying because it’s been so long, and love has not been enough to make him well.


         Crying because I can’t let him have pneumonia without being treated, but feeling social pressure not to treat it.


         Crying because getting well from pneumonia means he will live longer so his MS can get even worse.


         Crying because he is in the nursing home and crying because he will come home.


         Crying because my identity is so caught up in his, in being a caregiver and his wife. How will I know who I am when I cannot care for him any more?


         And crying because I don’t think I can ever love anybody again it hurts too much.

 

         It needs to be understood that the desire expressed above is not against the ill spouse. Most well spouses care and love their partners deeply. They do not want to lose them. What is expressed is the tremendous need to dispose of the life of drudgery, the life of anguish, the life of pain. A well spouse shares his partner’s pain. He will feel it as intensely as if it was his own. And, his own pain is added to his spouse’s pain; his own loss added to his spouse’s loss. For a well spouse, there is only one way out of the situation- leaving, his or yours, through death, divorce or desertion. There is no other way. And each solution brings with it tremendous feelings of guilt. Just thinking of having a normal life involves thinking of these choices, and with those thoughts, tremendous feelings of guilt.

 

         Once, at a well spouse conference, I heard a talk by a rabbi who was also a caregiver for his chronically ill wife. He spoke about Mrs. Eyov, (Mrs. Job, in The Book of Job). She was, he suggested, the first well spouse. She has suffered along with her husband, as all well spouses do. His losses were, after all, her losses too. She has no community support, or people who understand what she is going through. She has no one to talk to who was also a well spouse. She was totally alone with her thoughts.

 

         The rabbi wondered if one dimension of the “Mrs. Job” figure that stands in for many of us, is that of a well spouse whose only way out is in her husband’s hands, should G-d want it so. There is only one sentence attributed to her. She asks her husband to curse G-d and die. Could it be possible that among the many, many, commentaries we learn about Mrs. Job, there’s one that also addresses the very human emotion of simply wanting out? With a lack of support, she goes from thoughts of changing her situation to actually demanding it, as this may have been the only way she perceived to be able to relieve both her pain and his.

 

         Perhaps the difference between the emotions reflected in the poem and those of “Mrs. Job” is that one person found a way to channel and direct the raw emotions while not acting on them, leaving her faith and trust in life and in G-d’s decision.

 

         You can contact me at annnovick@hotmail.com 

The Children’s Dynamic

Wednesday, May 9th, 2007

        As well spouses, we know the effect of chronic illness on ourselves. We know how it robs us of our dreams, our future, even our identity. We know how it sometimes makes our anger turn to rage, and even on occasion we may find ourselves saying cruel things that we don’t really mean. For some of us, it leaves bitterness, for others depression. We live our emotions and so we recognize and understand them.

 

         But, what of our children? They too go through the same multitude of emotions brought on by living with a family member who is chronically ill. Often they don’t have the maturity to understand what they are feeling nor the skills to cope and deal with these emotions. They may act out and not know why. And, though they try, they sometimes cannot control what they do because they are driven by emotions they don’t understand.

 

         I just began the book, Sixty-five Roses by Heather Summerhayes Cariou. It is about growing up with chronic illness. In Ms. Cariou’s memoir she talks about the emotions of her family, but in particular herself, as she grows up in a family where her younger sister (and later her brother) has cystic fibrosis. She discusses her feelings toward her sister, love, anger, guilt and how it controlled her behavior toward her family while growing up.

 

         As I read the book I thought of my own children, and how they had coped with their father’s MS. Some parts of the book gave me new insights into their childhood. Some, of course, didn’t apply. On the whole I felt the book was honest, real and a worthwhile read for anyone dealing with chronic illness, whether as a family member, friend or even counselor. I’d like to share some quotes of the book with you. I think these words will help everyone have a greater understanding of what children deal with in this situation.

 

         The author describes living with chronic illness as living in a war, yet trying to be “normal.” She talks about how her parents “were like soldiers under fire…on permanent alert. They slept poorly, startled readily, frustrated easily…. I picked up on my parents’ signals, copied their rhythms, and mimicked their responses.” The family ” would walk the fine line between fearing the prognosis and maintaining hope… Preparing for (my sister’s) death, while still working tirelessly to keep her alive.”

 

         As for family dynamics Ms. Cariou fell into the role of the difficult child. “Each member of a family has a role to playeither chosen or assigned. It became my role to act as the lightning rod for the emotional electricity…. I gave voice to the unacceptable and unexpressed…as I howled out our darkest fears, our most unacceptable emotions.”

 

         As her sister is the focus of the family and center of attention she wonders, “Who was I besidesPam’s sister? How could I make myself seen or heard? What must I strive to do to be valued, by my family, my friends, or the world at large?”

 

         Talking of the guilt that always weighs her down she notes, “The child who is dying says, ‘In that case, I’d better have some fun before I go.’ The child who sits next [to her] asks, ‘How dare I have fun when my sister is dying?”‘

 

         The author continues to share her feelings as she grows up. “Just looking at [my sister] reminded me that I was so powerless, so impotent, so futile, so no good and nothing and bad. I woke up angry and went to sleep the same way.”

 

         Even as she becomes an adult, the guilt eats away at the normally joyous events of growing up. “I was thriving in my acting class. I was in love and I danced to the radio in my tiny kitchen singing along…. But at the end of the day my joy felt like sharp reproach to my life as Pam’s sister. I paid for it in nightmares, frequently dreaming that a stranger was coming through my window with a knife.”

 

         And so, through sharing her own experience of growing up with a chronically ill sister, the author allows us to get an understanding of each real player in the drama as she herself gains these insights. After years of a turbulent childhood she gains insight not only into herself and that of her ill sister but that of her parents as well. “It was not a lack of sympathy or intelligence that prevented my mother from understanding my anger. It was the thousand details of her life, and her own pain, blinding her.”

 

         Reading this book may be painful to those well spouses who have children. The insights into their feelings and emotions are quite raw. But it is a valuable journey. And we are reminded that it is not too late to acknowledge everyone’s pain as we gain insight into how we all, from the youngest family member to the oldest, are differently affected by the illness that may not live in our bodies, but certainly in our minds and emotions.

 

         You can reach me at annnovick@hotmail.com 

Self Delusion And The Need For Plan B

Wednesday, March 14th, 2007


 (Names changed)

     

        What is normal? It really can be anything we get used to. After living with a situation for years, we no longer see it as unusual. It becomes “our normal.” And so our perception of what is possible, even realistic, becomes distorted. After teaching special education for several years, I truly began to see all my students as brilliant. This was not just figuratively speaking. The absence of daily contact with other children in the mainstream skewed my perspective of what was realistic.

 

         I noticed that this was also true, when years pass as you live with chronic illness. Whether it is a defense mechanism or just a distortion of expectations, well spouses and the chronically ill may be the last to change their expectations of the sick person as he or she deteriorates. Because of this, there is rarely an alternative in place or a plan of how to survive in a crisis. When the chronically ill are functioning and continue to be in the work force, planning for a crisis is even more important as these well spouses relate.

 

         Libby’s husband was a pulpit rabbi. He continued to function as the leader of his shul throughout his illness. A ramp accommodated his deteriorating physical condition. He continued to be able to conduct services, officiate at bar mitzvahs and marriages and other life events. Although his voice was getting weaker, and he tired more easily, he just gave himself more time to prepare. This seemed to solve the problem.

 

         And so when Libby’s son got engaged, it was only natural to assume that her husband would perform the wedding ceremony. Even after he was hospitalized for pressure sores, they were assured he would heal in time to be there for the wedding. Unfortunately, they never prepared for anything else, and so when Libby’s husband deteriorated to the point of not even being able to attend the wedding, they had no alternative in place.

 

         Now, in addition to having to cope with the stress of a hospitalized husband who was getting worse quickly, Libby was faced with having no one ready to perform the wedding. The result was having someone officiate who barely knew the couple.

 

         Barry’s wife Chaya was a social worker. When she was diagnosed with MS they joined a support group for young couples. This group decided they wanted to have several sessions on how to parent young children when you’re disabled and Chaya was the logical choice as facilitator. Barry thought it would be great for Chaya to have the stimulation. Maybe it would even slow the mental deterioration he thought he noticed of late.

 

         The group was thrilled to have such a knowledgeable professional amongst them. And so the sessions began. Unfortunately Chaya’s mental deterioration started to escalate. Each week, her forgetfulness was more pronounced, she repeated herself more and more and made less and less sense. Her husband watched, embarrassed, as fewer people attended each time and those that did, looked at each other in confusion.

 

         By the sixth session Chaya wanted to quit; she knew her talks weren’t expressing what she was trying to say. She was embarrassed and devastated. But neither she nor the group had prepared someone to take over just in case she was unable to complete the course. So out of a sense of responsibility she continued to try until one day no one attended. 

 

         Chaya, humiliated, told her husband she would have given up weeks ago if there had just been someone ready to take over. If they just had that plan B she would have saved herself the awful feelings she now had.

 

         Hosts of weddings in large cities often give out the kibudim (honors) under the chuppah ahead of time so that people will not be taken by surprise. It is also common to prepare alternates for every brachah in case the person originally called upon is stuck in traffic. This is having a plan B so that everything goes off smoothly and without embarrassment.

 

         As well spouses, there is something we can all learn from this to help our lives go more smoothly. If your spouse (who is chronically ill) is the one who always does the taxes, make some time for him to share his filing system with you, just in case you need to suddenly take over.

 

         If your spouse is the one who handles all the financial situations in the house, make sure you at least have a list of names and phone numbers for all the professionals you use (from the accountant to the mechanic) so you know whom to contact when you need them, should your spouse become incapacitated.

 

         If the sick spouse is a professional, make sure there is someone ready to take over for him/her should there be a need to back out of the person’s professional commitment for any period of time. It needs to be someone that she or he is comfortable with. In this way there will not be any compulsion to continue when she or he either can’t or shouldn’t.

 

         Once there is a replacement ready, everyone will be spared the added stress and unnecessary embarrassment that may exacerbate the illness. Instead, everyone will be able to put all their energy into dealing with the deteriorating illness and its offshoots. Even if there are no signs of deterioration and you are sure the illness is stable, a plan B can be a real safeguard, just in case. It is the nature of chronic illness, after all, to deteriorate and have crisis follow crisis. Even if it is never used, just having a plan B can give you peace of mind.

 

         You can contact me at annnovick@hotmail.com

Printed from: http://www.jewishpress.com/sections/magazine/self-delusion-and-the-need-for-plan-b/2007/03/14/

Scan this QR code to visit this page online: