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A shandeh

09/30/2015 03:09:09 PM

Sep30

Rabbi Jennifer Jaech

Yom Kippur Morning 5776

I have always loved Yiddish, a language that captures the nuances of the human condition like no other.    For example:   While the Eskimo people have over fifty words to describe different kinds of "snow;”[1]   Yiddish is the only language I know that contains multiple words, all with different shades of meaning, to describe a disagreeable person.[2]   Examples like “nudnik” and “yenta” come readily to mind.[3]

The Yiddish word for a scandal or shame is a shandeh.[4]   It’s appropriate to talk about shame on Yom Kippur.   Each one of us has done things that we feel ashamed of, although for most of us, I doubt that our shameful acts would amount to a scandal – at least, I hope not.  

Every day the NY Times publishes stories about issues that could be labelled a shandeh.  But the story I want to tell you this morning is not one that you will read about in the NY Times.   It’s a true story about a family in this congregation.   This family has given me permission to tell their story to you, although I have changed their names to respect their privacy. 

There are four members of this family, two parents and two sons.  I will call the parents Jon and Jane, and their sons, Jason and Scott.  Their story was told to me by Jane, and I am deeply grateful to her.

The eldest son in the family, Jason, has mild autism.  Jason is also highly intelligent.  He was able to read when he was just three years old.   Jason was also an anxious child, but thanks to his attentive and proactive parents, he benefited from both traditional and alternative therapies.   Overall, Jason was a sweet, loving and happy boy.

Jason was in first grade when Jane received a call from his school that he had had a panic attack during gym class.  Jason complained about double vision, so Jane took him to their pediatrician, who ran a test for strep.    The strep test was positive, so the pediatrician prescribed an antibiotic.  As they left the office, Jane said to Jason, "I'm so glad we went to the doctor.  It's just strep."   She didn't know that her life was about to change forever.

Jason started to complain of his legs aching, and even more troubling, his whole demeanor and disposition changed.  He began having terrible temper tantrums and throwing things.  Or he would lie on the floor saying "mommy doesn't love me, mommy wishes I would die."   Over time, these behaviors diminished, but others emerged.  Jason became inattentive; he couldn't sit still.  He developed severe separation anxiety and his academic skills began to decline.

Jane did what most parents would do:  she began taking Jason from doctor to doctor to try to figure out what was wrong with her son.   Jason received multiple and conflicting diagnoses, from ADHD to Bipolar Disorder.    There were no answers.  Their pediatrician, annoyed at Jane's insistence that her son wasn't receiving the care he needed, stopped returning Jane's phone calls.  At one point, the pediatrician called Jane’s husband Jon and asked him:  what is wrong with your wife?

Finally, after six months, Jason received a diagnosis.  He had PANDAS,[5] an autoimmune condition associated with strep infections, a condition in which antibodies start attacking the brain instead of the disease.  But while having a diagnosis was a start, it didn’t provide relief.   PANDAS was a newly discovered disease, and physicians didn’t know how to treat Jason effectively.  

Jason’s symptoms waxed and waned over the years.  He couldn’t stay in public school and had to find a more appropriate educational placement.  Sometimes Jason’s symptoms were controlled with medication but the positive results never lasted.  One alternative treatment required traveling to another city for three days.  While this treatment initially seemed to give Jason some relief, he became suicidal again after eight weeks.  

One summer, Jason had a severe depressive episode and went to a residential treatment center.  While there, he tried to take a belt and put it around his neck.  The treatment center refused to continue to treat Jason, and his parents and educational consultant were called. Their consultant replied with the message:  “It’s the Jewish holidays and I can’t deal with it.” 

So Jane had to deal with it instead.   She spent two full days making phone calls, trying to find a long-term hospital for children with autism and mental health issues.  There is no such place on the east coast.  After Jane located an appropriate hospital in Utah, Jason had to be awoken in the middle of the night and escorted there by strangers.  Jane followed on a different flight.  

Jason is home now, and in school, but even today it is not uncommon for Jane to get a call from him saying “I tried to kill myself.”  Every day Jane must worry about her son’s safety, to ask herself the question that no parent should have to ask:  “Will my son live, or die?  Am I going to be able to protect him?”

I imagine that most of us would want to reach out to a family that is struggling so terribly.   This didn’t always happen.  While Jason’s grandparents gave invaluable support, the family’s circle of friends grew smaller.  Some friendships withered because Jane didn’t have the time or energy to invest in maintaining them; other friends withdrew because they didn’t know what to do or say.   Jon and Jane struggled without the full support that they deserved.  I think this is a true shandeh – a shame.

Their experience is not unique.  Jane told me of two families where a child in the family had severe bipolar disorder and the mothers in the family were diagnosed with breast cancer.  Both families told Jane that when they were facing cancer, many people called them and offered support by bringing over everything from food to hand cream.  But when their children were in an acute bipolar depression and the parents couldn’t leave the house for fear that their children would harm themselves, their phones didn’t ring and their refrigerators were empty. 

I understand why we might shy away from individuals who have mental illness.   Mentally ill people  have been stigmatized at least since the time of the Bible.  Ancient Israel’s first king, Saul, appears to have suffered from paranoia and violent episodes, and his symptoms were attributed to an "evil spirit" that terrified him.[6]    Saul’s successor, David, pretends to be mentally ill by exhibiting frightening symptoms that were understood at the time to be associated with madness:  scratching on doors of gates, and letting saliva run down his beard.[7]   Later Jewish writings attributed illness – including mental illness – to demons.[8]   Scary stuff.  This legacy of fear is one reason why those with mental illness have been stigmatized and isolated throughout human history.[9]   This is a shandeh.

Today we have an added fear:  that a mentally ill person will get a weapon and hurt others.   This happens with tragic regularity:  in movie theaters, in houses of worship, in schools.  Yet somehow this fear has not motivated us as a society to get serious about mental health.  As Liza Long writes, when a mentally ill person commits an act of violence, "We mourn at innocent victims' funerals, wring our hands, talk about passing gun laws, and do nothing about mental illness."[10]   This is a shandeh

It is not enough to agree that yes, this is a shandeh, a shame.  The purpose of Yom Kippur is NOT to simply feel bad about the ways we are broken.  Instead, Yom Kippur calls us to acts of healing and repair, to undergo meaningful change as we enter a new year.

The first thing to change is our understanding of mental illness.  Too often we make the false distinction between physical health and mental health.  But although the brain is clearly part of the body, medical practice treats mental illness very differently than physical illness.    If someone has a heart attack, we call an ambulance.  If someone with mental illness has a breakdown, we may call the police, even though the officers may not be trained how to respond appropriately. 

Too often the person with mental illness may not receive the necessary treatment, either because the insurance companies won’t pay for it or the treatment simply is not available.[11]  Jane told me that here in Westchester, so many adolescents are struggling with mental illness that it is extremely difficult to get a bed in our local psychiatric hospitals.  Often families must sit in the emergency room of their local community hospital in order to get assessed.  Then they must wait for an available bed at an appropriate facility.  This is a process that can take one or two days.   If this happens in a wealthy area like Westchester, you can only imagine how difficult it is for families across the nation.

The more we understand mental illness and how it affects a family, the better able we will be to effect positive change.   There is simply too much information to provide to you in a sermon, so when I post this sermon on-line, I will include a link to a book that I found useful.

Once we have a deeper understanding of mental illness, we are in a better position to reach out to those we know who are struggling with it.  Earlier in this sermon I mentioned how isolating mental illness can be.  But some of Jason’s family’s friends knew what to do.   Jane told me the story about going to the movies with Jason and another friend.  In the theater, Jason had a crisis and abruptly left; Jane followed him out of the theater.  When she returned, her friend turned to her and said “I see that you have your hands full.”  That simple comment meant a lot to Jane.  It meant that her friend acknowledged her difficulties and -- just as important -- she passed no judgment.

Other people offered specific help.   Nobody likes to ask for help – it is hard to let other people see your struggles, especially when you must maintain a strong front so much of the time.   So it meant a great deal when Jane received offers such as:  “Can I help with transportation for your son Scott?” or "Just know that Scott is welcome to stay over here anytime."   Jane told me how meaningful it is to have the support of a community, to know that others care about you and what you are going through.   If you are not sure whether you could say or do the right thing to help a family struggling this way, remember this: It’s as simple as sending the message “you mean a lot to me.” 

Finally, if you or someone among your circle of loved ones is struggling with mental illness, I want you to know that what you face is NOT a shandeh.  Mental disorders deserve no more stigma than physical disorders.   It wasn’t that long ago that people with AIDS were stigmatized.  The fact that here, today, they are no longer stigmatized gives me some hope.   As a society, we can and do make progress.  

I also want you to know that you are not alone.  At Temple Israel we are considering starting a support group for family members affected by mental illness.  Please contact me if you think you would benefit from such a group. 

Most important, I want you to know that there is hope.  During our conversation earlier this year, Jane told me:  “The amazing thing about Jason is no matter how many times his mental health kicks him down, he picks himself back up.  He’s really strong....he wants to live.”   Jason’s strength is replicated in many others who face similar struggles.   There is hope.

On this Yom Kippur, we acknowledge our failures of love.  We admit that we have fallen short, that we have turned away from others, that we have abandoned those who need us.   Acknowledging our shortcomings, our shame, is the first step towards meaningful change.   To only feel the shame and not to make meaningful change – that would truly be missing the mark.   That would be the real shandeh.  We must not define ourselves by our failures of love.   On this sacred day, this Day of Atonement, I know that we can do better, and I have faith that we will.


[1] http://www.washingtonpost.com/national/health-science/there-really-are-50-eskimo-words-for-snow/2013/01/14/e0e3f4e0-59a0-11e2-beee-6e38f5215402_story.html

[2] As told by David Sperling, my resident Yiddish expert. 

[3]Other examples include kvetch, farbisseneh, yold, fyak, hazzer, schmuck, etc.

[4] “Shandeh” and “scandal” are etymologically related

[5] Pediatric Autoimmune Neuropsychiatric Disorders associated with Strep

[6]  I Samuel 16: 14-23 and 19: 9.

[7] I Samuel 21: 14-16

[8] Examples include Luke 9: 37-42, Luke 4: 33-34, Matt. 8: 28, Mark 7: 25

[9] Long, Liza.  The Price of Silence, p. 41

[10] Ibid. p. 23.  It is important to note that most mentally ill people are not violent, and pose no threats to others.

[11] Ibid., Chapter Four

Sat, April 20 2019 15 Nisan 5779