“I know I’m not the best person socially. I know I’m not. Asperger’s has this tendency to make people who have it not the best people socially.   I can only be one person – me.” Danny Klein wrote these words in one of the many journals he kept in high school and college. In April 2015, Danny committed suicide.

At our Na’aseh program last night, Danny’s courageous parents shared these and other words with fifty OJC teens. As part of a learning unit entitled “I am Enough,” we were learning about the inclusion of people with Asperger’s, what is today referred to as people on the spectrum.

Five years ago, Danny attended every Tuesday evening at Na’aseh. Often wearing a cool hat with earflaps that he himself had crocheted, Danny was an active participant. Kind, generous, and social, Danny wanted to be in the midst of whatever was happening. But unless his older brother Jared was at Na’aseh that night, Danny was never actually at the center of things. Danny was never excluded or teased or bullied. He was always tolerated. Last night, Rabbi Craig Scheff told the teens that tolerance is not good enough. We taught the teens of the OJC the value of inclusion.

Danny’s mom Judy explained all about Asperger’s, how it shaped Danny’s life and affected the entire family. Asperger’s is primarily a communication disorder that manifests as having difficulty with the back-and-forth flow of conversation, reading non-verbal cues, and understanding sarcasm.   Judy told the teens, “What I saw was a kid who desperately wanted a circle of friends, who had so much love inside to give, who was prepared to be the best friend you would ever want… I saw a kid who held it together all day at school and then came home and asked me to help him figure out what was going on in social situations that he didn’t understand because people didn’t always say what they really meant.”

Judy concluded her remarks, “When I started typing this on my iPad and autocorrect didn’t recognize “Asperger’s” yet, it corrected to ‘as perfect’. Actually, my iPad was right. Danny was just as perfect and as imperfect as every one of us, just another good kid, and every good kid deserves friendship.”

How do caring adults teach teens the necessity of going beyond their safety zones to include others when every teen himself or herself is struggling with finding a place? We offered them the opportunity to listen, ask questions and participate in a variety of learning experiences. The Klein family’s participation was at the core of their ability to feel safe asking and processing the evening.

After Rabbi Scheff and I framed the evening and Judy introduced Danny’s story, I had the privilege of interviewing my friend Zahava Finkel in front of the group. Zahava is a 29-year old woman with Asperger’s who told her story with honesty and humor.

She and I facilitated an activity that she brought to our program. Everyone wrote their name on a piece of masking tape and put it on their shirts. Zahava then read statements that began with “I have been made fun of for…” and finished with “the way I look” or “my athletic ability” or “asking lots of questions when I don’t understand.” If a sentence rang true, a piece of tape was torn off. One teen said, “Every put-down diminishes our sense of who we are.”

In small groups, we considered Danny’s own words, allowing each teen to process the difficulties and triumphs that were Danny’s too short life.

When showed an interview of Danny with his psychologist, Youth Director Sharon Rappaport fielded questions from the teens that were answered by Danny’s parents and brothers. I was reminded of what the evening was really about when one teen asked, “What did you love about Danny?”

For me, the most important take away of the powerful evening is the generous spirits of the Klein family. They are experiencing an unimaginable loss and their grief is palpable. But all of us who love them watch in awe as they channel that sorrow into activism. In Danny’s name, they are determined to make a change in our world so that people who struggle as Danny did will have champions among their peers.

At the close of the night, Judy told our teens, “I know that you are learning about what it means to say ‘I am enough’ but I want you all to know that you aren’t just enough. You are all way more than just enough.”

May Danny’s name always be for a blessing.

Rabbi Paula Mack Drill

During eight years of social work in a Jewish geriatric center, I gravitated to Barnhard Pavilion for residents who lived with dementia. I sat with elderly men and women, talking quietly, feeding them breakfast or singing show tunes from the 1950s. Most often, they remained locked in their own diminished world. But if I sang “Shalom Aleichem” or brought a lulav and etrog to shake or lit Chanukah candles, the frail resident would come alive in that moment, often joining in the words of the song or the blessing. Those words would emerge from a deep, hidden place. I call that place the soul.
Zachor! We are commanded as Jews time and again to remember. Jewish ritual, study and celebration are anchored in national and personal memory.
Can Jews who live with Alzheimer’s or some other form of senility still participate in Jewish life? What happens to the souls of Jews whose memory has been robbed by dementia of some kind? And more importantly, how can the family and friends of a person who has lost some or all memory find their loved one within the person before them?
We are commanded “You shall rise before the aged and show deference [v’hadarta] to the old.” (Vayikra 19:32) Poet Danny Siegel plays on the Hebrew word v’hadarta and translates this verse: “You shall rise before the aged and allow the beauty, glory and majesty of their faces to emerge.”
The answer at a theological level seems to be that the soul of a person is still within. Soul is somehow separate from intellect, emotion or memory. The pure piece of God implanted within every person remains as long as breath remains in the body. In rare and gentle moments, the soul shows itself.
The answer to the question about coping at a personal level, however, is very different. Theology does not help when long, painful days of coping with a loved one’s losses are our reality. A fleeting moment in a heartbreaking flow of hours, days and weeks is not enough to sustain most of us. The mourning process is excruciating for those who have lost a person even as that person sits before them. And yet, I still encourage families to seek those moments when the beauty and majesty of the face emerges, the moment of soul.
My Nana could not remember which grandchild I was during the last three years of her life, but she would snap to attention when I asked her for the chicken soup recipe that delighted her family every Friday evening at her Shabbat table. The Cantor who lived on Barnhard Pavilion for four years could not tell me where he had lived before the nursing home, but he could lean back in his chair and sing Kol Nidre as if he were in his sanctuary once again. I felt privileged to recognize their souls in those moments.
My friend Charlotte Abramson’s daughter Adena wrote a a prayer-poem for Yizkor this year. Adena wrote about her father, Rabbi Robert Abramson, my friend and teacher. I share it here with Adena’s permission, in the hope that it will bring recognition and succor to those of us coping with dementia in a loved one and that it will encourage all of us to reach out today to someone who is living the long grieving process of a family member of someone with senile dementia.
You are still here, but I remember.
I remember when your mind was connected to your voice.
I remember when your mind and body acted as one.
When with two words you could cut through all the noise or cause the room to burst in laughter
When your eyes sparkled green and were clear with focus.
Is it too early for me to start remembering?
You are still here. Your heart still beats. You are kind.
Do you experience joy?sadness? fear?
Is it still there?
So, I remember because you cannot, and by doing so, I feel all.
Adena Abramson

With blessings, Rabbi Paula Mack Drill

Thank you to so many congregants, family members and friends who have responded in phone calls and writing to my Rosh Hashana sermon, anchored by Dr.Atul Gawande’s deeply affecting book, Being Mortal.

In the days since Rosh Hashana, many of you have shared your stories, struggles and experiences of deep understanding. And many more of you have asked for assistance with beginning the difficult conversations about what our lives mean to us. On Rosh Hashana I asked us to consider how we want to face the end of our lives if we are blessed with the opportunity to have choices. I asked us whether we know the true choices of those we love.

I share here a synopsis of my teaching and the links to the resources that I mentioned in the sermon.

In the experience of family members dealing with the inevitable dying of an elderly or seriously ill loved one, there comes a time when they recognize at some level that they are up against the unfixable. If they are blessed or wise or very well versed in matters of life and death, however, the unfixable does not have to be the unmanageable.

Gawande’s transformative book is filled with studies and anecdotal evidence about the astounding intersection of medicine and dying in modern society. He writes that scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. Gawande believes that the medical world has proved alarmingly unprepared for helping people understand death. His book is filled with stories of heartbreak and loss and dying. But each story is most of all about triumph – triumph due to the recognition that we are all mortal. Being mortal means that we are not immortal. It means that all of us will one day die.

As I prepared my sermon, believe me, I understood that mortality can be a treacherous subject. Listeners might be alarmed at my talking about the inevitability of decline and death. No matter how carefully I framed my words; for some, the topic would raise the specter of a society ready to sacrifice its sick and aged. But here are Gawande’s words that encouraged me to take up this topic despite the risks of discomfort or fear. He wrote: What if the sick and aged are already being sacrificed – victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognized?

Gawande’s book, to me, is a very Jewish conversation. Rebbe Nachman of Bratzlav wrote: Kol haolam kulo gesher tzar m’od, v’ha-ikar lo l’fached klal. “All of this world is just a very narrow bridge and the main thing, the essence, is not to be afraid at all.” Perhaps that narrow bridge is meant to teach that between birth and death, there is just a narrow passage, like grass that springs up in the morning but is gone by night and no one can tell where it grew. That bridge is the human condition. We move from birth toward death every moment. So – do not be afraid. Rather, walk confidently and solidly and powerfully on that bridge. Without fear, we can enjoy the view.

Do not be afraid at all.

What is required is courage. We require courage to acknowledge what we all know to be true, and then, most daunting of all, the courage to act on the truth we find.   The wisest course is so frequently unclear. In conversations about mortality, it is important to decide whether our fears or our hopes are what should matter most.

There is no right or wrong way for everyone. The only correct way of facing aging, illness and dying is the way required by each individual in his or her unique situation.

The difference between a good death and a hard death hinges on whether someone’s wishes were expressed and respected, whether they’d had a conversation about how they wanted to live toward the end. While 90% of Americans think it’s important to have such conversations, only 30% of us have actually had these conversations. We can change that by bringing the people we love to the kitchen table to have the conversation. And we can do this before there is a crisis rather than in the I.C.U. So what stops us? We don’t talk with our loved ones, we don’t talk about our own desires because “it’s too soon.” But it’s always too soon … until it’s too late.

Throughout the liturgy of this High Holy Day season, we Jews practice thinking about our mortality. Who shall live and who shall die? On Yom Kippur, we will abstain from food and drink, playacting a mini-death in order to understand the necessity of teshuva, repentance. Our rabbis knew what they were doing, insisting that the theology of each new year must address the meaning of our lives which can only be done with an acknowledgment of the finitude of these lives of ours.

The question remains: How do we have these conversations?

If you choose to begin the conversation with your doctor, consider the Dear Doctor letter devised by a team led by Dr. VJ Periyakoil, Director of Palliative Care Education at Stanford University School of Medicine. Here is Dr. Periyakoil’s letter that can help in this conversation.

I advocate that the conversation also take place in your families and in your circles of intimate friendships. Conversation Starter Kit created by The Conversation Project avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living. The kit asks what matters to you, NOT what’s the matter with you. http://theconversationproject.org/starter-kit/get-ready/.

Rabbi Scheff and I are available to you to help begin the conversations. Contact us at Rabbi.Drill@theojc.org or Rabbi.Scheff@theojc.org. Be in touch if you would like to see the full text of my Rosh Hashana sermon.

If Rabbi Nachman was correct, and all the world is just a narrow bridge, I pray that all of us are able to make meaning of our short walk across it. It begins with acknowledging the bridge, not to diminish life, but rather to value it.

Shana tova tikatevu v’techateimu, May you be written and sealed for a good new year,

Rabbi Paula Mack Drill