Sometimes I think I have the best seat in the house. From my vantage point here on the bima I can see everyone. I see people I’ve known for 20 years and see how your families have grown, and I see new members of the synagogue. I see people who became bar and bat mitzvah recently and I see couples who are looking forward to getting married just next month! I see young adults and I remember meeting them when they were only in preschool. Looking out at the congregation and being reminded of the simchas brings a smile to my face.
But when I look out over the congregation I am also reminded of the sadness in your lives. I see empty chairs where for many years husbands or wives had sat. I notice parents or siblings who are no longer with us. I see pain and suffering because I know who has been in the hospital, or who is undergoing cancer treatment or who has just been diagnosed with a disease. There is a burden in knowing this information yet I take comfort in knowing that in most of these emotionally trying events our congregation has been there for you. Our Chesed Committee and also your shul friends have been there to provide food, to offer a ride, or just to provide a shoulder to cry on. Though I am saddened by being reminded of your loss I am heartened that we do our best to offer the emotional support you need.
Yet I also know that we are not providing support to everyone. Not because we don’t want to, but tragically because we don’t know about it. There are some illnesses and hospital events that we can’t help noticing. If someone walks into shul with crutches and a cast on a leg we know immediately that something is wrong. If someone is wearing a wig or a hat because of sudden hair loss we know that person is most likely undergoing chemotherapy. But there are some illnesses that are less obvious or might even be embarrassing or humiliating and I’d like to give voice to those illnesses today.
Many of you know that my older brother - my only sibling - has an intellectual disability. That’s the new name for what it had been called - developmental disability - or even what it was called while I was growing up - mental retardation. For the first 14 years of my brother’s life, until I was 12, my brother David lived at home. Sure my brother was different - he didn’t talk very clearly, he repeated things and he was even physically violent at times - but I didn’t know any better. I didn’t know what so called “normal” brothers could be like. He was simply my brother.
It was only when we went out as a family that I knew something was wrong. People would stare at us if my brother yelled out. People would stare at us because my brother looks a little different. And because of how other people were acting my Mother would be embarrassed. My mother by nature likes to keep a low profile and people’s reaction to my brother only exacerbated her discomfort.
I share my personal story for the broader points I want to share. Mental Illness - whether it’s depression, schizophrenia or bipolar disorder or Alzheimer’s disease or dementia - is terrible for the person who suffers from it, for the caregiver and for the family. The illnesses are not understood, they don’t have a cure and they exhibit in a variety of ways. A knee replacement is certainly inconvenient, is definitely painful and requires short term life changes, but if all goes well life goes back to normal or even better than normal in a relatively short amount of time. Mental illness never gets better, some require constant medical supervision and prescription medication management and certainly life never gets back to normal.
The National Alliance on Mental Illness - NAMI - published the following data. In America, 1 in 17 adults, that is, more than 13 million people, live with a serious mental illness. The Alzheimer’s Association reports that 5 million Americans live with Alzheimer’s disease and every 67 seconds someone is being diagnosed with the disease. 18% of American adults, 42 million people, suffer from some kind of anxiety disorder such as obsessive compulsive disorder, post traumatic stress disorder or phobias. Though that’s a lot of information to digest, it seems clear from these staggering statistics that there could be a significant portion of our congregation today that either is currently suffering from such an illness or knows someone close in their family who is. Yet I know that we as a congregation may not be doing all it can to provide support and assistance.
Part of the reason we may not be could be that we simply don’t know anything is wrong. Many people who suffer from depression for example can hide the symptoms very well. If they are taking the right dosage of their medication people with depression can find the energy to get out of bed, hold down a job and raise a family. People with whom they come into contact may not perceive anything is wrong.
But when chemical imbalances occur depression becomes more severe and can lead to suicidal thoughts. In my first year at Shaare Tefila I had first hand experience with someone thinking about suicide. Though I was never trained as a rabbi to handle such a situation, common sense dictated that this person shouldn’t be alone. I called the Jewish Social Service Agency - JSSA - which I knew had an emergency hotline. A social worker came on the line and talked me through what I could do to help. In the process I understood how much an impact clinical depression has on a person’s life and on their family members.
Mental illness can’t and shouldn’t be suffered alone yet not everyone is capable of caring for their loved ones. According to NAMI, 60% of adults and nearly half of youth ages 8-15 received NO mental health services this past year. According to the Alzheimer’s Association in 2013 15.5 million caregivers provided 17.5 BILLION hours of unpaid care which would have been valued at $220 billion. Who takes care of the 60% of adults with mental illness? Who are those 15 and ½ million volunteer caregivers? They are family members of course.
When I visit someone with Alzheimer’s I find it very frustrating. Sometimes the person is communicative and we can have a conversation. But the dialogue is stilted and brief and often repetitive. Usually the person doesn’t recognize me and even after introducing myself I still may not be recognized. So I schmooze for a little while, maybe sharing news of the shul or asking after the family. The visit never lasts more than 10 minutes. But if the person is non-verbal then I’m frustrated not knowing what to do. I have no idea if the person even knows I’m there or can register what I’m saying. I know it’s a mitzvah to visit but I am uncomfortable because of the one-way nature of the interaction.
Imagine then what family members feel. Imagine a husband watching a wife slowly become forgetful, then become irritable and begin having unusual mood swings. The spouse wants to care for their partner but perhaps they aren’t healthy enough or they don’t have the means to afford a nursing facility? Or perhaps the wife doesn’t want to send the husband to the facility because it would be unsettling or just because she knows that he would be most comfortable at home.
Or imagine the parent who watches their so called “normal” child begin to change. The once playful, socially interactive child is now reserved and different. One doctor after another is baffled or suggests a diagnosis yet testing in order to be sure costs thousands of dollars. Once testing is done, depending on the severity of the illness or disorder, then the question is where to go for appropriate intervention? Is the county public school system appropriate? It’s certainly affordable but perhaps a private school would be better? Then there’s the cost of hiring an advocate to argue that the county should pay the tuition at a private school. Even once the facility is found what does the parent do for the child after school hours? And what does the parent do when the child turns 21 when the county stops paying for school? What kind of facility or program is appropriate then?
Mental illness and dementia take a tremendous financial and emotional toll on the family member. My parents were lucky that Pennsylvania agreed to pay for my brother to live at a private institution outside Philadelphia for about 15 years and now Pennsylvania pays for him to live in a group home. Not all states are so generous and not all people with mental illness find the right facility. Though my brother is safe and happy where he is my parents still care for him. They speak to him on the phone every week and meet with his team every quarter to manage his care.
Because mental illness is so complex and the care can be so intense it becomes imperative for us - as a congregation - to offer our support. Family members need to know that they can turn to me and to the shul. Family caregivers may be so overwhelmed by the enormity of their task that they may not consider turning to us. It may just be enough for them to deal with doctors and bureaucratic paperwork that coming to shul on shabbat could be seen as a luxury they don’t have time for. But we have to be aware of people who start missing shul and people need to know that they can turn to us for help.
My door is always open. Like I said before I’m not a licensed therapist nor am I professionally trained in these matters but I do try to provide an empathetic ear and I am aware of resources in the community to which you may turn for help. I want you to know that you can call or email me any time and I am always happy to talk wherever and whenever you want.
We also need to become better educated about the variety of mental illnesses and alzheimers disease. We need to be aware of the impact these diseases have not only on family members but on all Americans. We should know about health care laws, education policy and long term care and advocate for the rights of people with mental illness. The NAMI and Alzheimer’s Association websites would be great places to start.
Being knowledgeable of these illnesses and being supportive of our friends and family are Jewish imperatives. We are taught that “kol Yisrael areivim zeh lah zeh” that we are responsible for one another. That teaching is best highlighted in the prayer we are about to recite. In a few moments we’ll recite the yizkor - memorial service - and we’ll recall the lives of our loved ones. We’ll reflect on the impact the deceased have had on our lives and we’ll remember our lives with them. It’s a deeply personal service one that we’d expect to recite privately. Yet we say it in public with perfect strangers all around us! Sure our immediate family and friends are right next to us but just a couple of rows in front or behind you is someone you may have never met before. How can we be so personal and private in the midst of this community?
That is the powerful lesson that yizkor teaches us. In the most intimate and grief stricken moments we are not alone. In his classic Yiddish story titled “If Not Higher”, Isaac Leib Peretz described the rabbi of a shtetl who was held in high esteem by his community. Every day of the month leading up to Rosh Hashanah while the congregation rose early to recite the “selichot” prayers asking for forgiveness, the rabbi would not be in shul. Instead he was out in the forest cutting down trees. He took the wood to the home of an elderly and infirmed woman. While placing the wood in the fireplace and lighting the fire the rabbi would recite his “selichot” prayers. Why would he do that? Why would the rabbi help an old woman, alone at the edge of the village instead of pray with his congregation? Because he was living up to Isaiah’s teaching. As Isaiah taught us once again in the haftorah this morning, fasting and praying are meaningless if the poor are still hungry and if the disadvantaged are still naked. We need to put our prayers into action by recognizing that we are one community. We need to know as we share our most private thoughts with God that we are not alone and we must commit ourselves while we pray that we will help other people in their time of need.We can’t be alone when we are reciting the yizkor prayers and therefore by extension we can’t be alone in whatever crisis we are enduring. We must know that we have a community of people who care. We must know that we need to reach out to those in need, especially those suffering in silence. We must know that we are a community that cries together and smiles together. May we resolve this year not to be alone.