This is a long essay prompted by my thoughts about the Jewish New Year, the Jewish Day of Atonement, and the prayer that Jews say for healing. Grab a cup of your favorite hot beverage, and settle in. As always, feel free to share. And L’Shana Tova (Happy New Year).
At 2011 Yom Kippur services (Jewish services for the Day of Atonement), with the help of my partner Susie Lampert, I delivered the following teaching using a text-to-speech program that allows me to express my thoughts in spoken words even though my ability to speak is quite compromised. The program is called Neo-Kate. It’s free app for the iPad.
Last year at this time, I was on the verge on turning 59. Yesterday, I turned 60. God willing, next year I will turn 61. But the medical unknown I faced last year, that I told you about then on the afternoon of Rosh Hashanah, has turned into a dreaded disease: ALS. There is no cure. There aren’t even any good treatments. So, barring the end of the world as I know it, or a medical miracle, I know how I will die and that my life will be shorter and my living far more compromised than I would have ever thought or wished it to be.
As my ALS progresses, I want to be able to make conscious choices about what I am willing to tolerate in terms of interventions and daily life. To do that, I need to keep focusing on what I value in life — love, music, words, time with people I care about, activities of the mind, pursuit of spiritual connection — and how much of what I value can be achieved or obtained when there is so much my body will not be able to do.
And I want keep my eyes wide open to what the future holds, realizing that I am essentially an optimist in how I approach life. I think we respond to devastating health news from our essential beings. A fatal illness does not change who we are. For me this means that, even as my physical capabilities wane, I will look for and try to embrace the positive aspects in what remains available to me.
Illness confronts us with some of the greatest uncertainties we ever face. In my case — and really for all of us — the uncertainty is not about what the future holds, but how it will unfold. How do we embrace illness, if that is our reality, without welcoming it? How do we continue to do what matters to us as long as we can? How do we find comfort in the support of friends and the love of God? What role does God play in a devastating illness and in healing?
These issues are particularly poignant during the Days of Awe, and especially at Yom Kippur. As my Rabbi, Margaret Holub, reminded me, one important part of the Yom
Kippur ritual is rehearsing our own deaths as we fast, repent, dress in the white of a shroud and engage in the recitation of the culminating Shema (the central prayer of the Jewish faith) in the divine presence that closes the Day of Atonement.
But the prayer we say for healing — the Mi’ She’Berach — is said whenever the Torah (the first five books of the Old Testament) is read, and at many other times as well. Healing is by no means limited to Yom Kippur. And there are quite a few translations of the prayer, which originated, interestingly enough, as a prayer for rain in a time of draught.
I’m partial to Debbie Friedman’s translation, which can be stated briefly as:
May the source of strength who blessed the ones before us
Help us find the courage
To make our lives a blessing
And let us say, Amen
Bless those in need of healing with r’fuah sh’leimah
The renewal of body, the renewal of spirit
And let us say, Amen
The new facts of my life also brought back to me the soliloquy from Hamlet that was
central to the teaching on uncertainty that I did here last year on Rosh Hashanah. Most people know the part of this speech that starts “to be, or not to be,” but there are other words that speak to me:
But that the dread of something after death,
The undiscovered country, from whose bourn
No traveler returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pitch and moment
With this regard their currents turn awry,
And lose the name of action.
The Friedman translation of the Mi She’Berach prayer is really not so far removed from Hamlet. I think asking for the courage to make our lives a blessing has a lot in common with avoiding the fear that puzzles the will and makes us lose the name of action.
That Hamlet quote also has things in common, I think, with comments Rabbi Margaret made at the start of Rosh Hashanah (the Jewish New Year) this year about what it would be like to live conscious of all the terror and awe that are part of the world that God created. Nothing like an always-fatal disease to remind me that this is actually where I now live all the time. How do we face this reality and keep moving forward?
One aspect of my answer to this question is nicely expressed in one of the meditations at the beginning of our High Holy Day prayer book:
“Awe is an intuition for the creaturely dignity of all things and their preciousness to God; a realization that things not only are what they are but also stand, however remotely, for something absolute. Awe is a sense for the transcendent, for the reference everywhere to God, who is beyond all things. Awe enables us to perceive in the world intimations of the divine, to sense in small things the beginning of infinite significance, to sense the ultimate in the common and the simple; to feel in the rush of the passing the stillness of the eternal.”
One way for me to keep the terror in perspective is to focus on the places where God’s awe is manifest. As I’m less able to get around, I notice a lot of things through the front window of our house: hummingbirds, the clouds in the sky, the quality of the light. In the right frame of mind, I draw from these things the sense of the transcendent, of the reference everywhere to God. They enable me to sense in small things the beginning of infinite significance.
Within this framework of awe and terror, I keep moving forward — which is another way of not losing the name of action, of trying to make my life a blessing — I am determined to do what I can, while I can, and to adapt to do things differently as I lose function. I’m an activist by nature or nurture or experience. As I lose mobility, I have acquired a cane and walker to help me
get around on foot. I use eating utensils with fat handles, which are easier for me to grip than regular utensils. Since I can’t talk very well, I write a blog that keeps me engaged in the world and interacting with people who care about the things I care and write about, and I speak with the help of technology. I spend time with my beloved partner Susie. I travel as I can to places I need or want to be.
And, over the course of the past year, as I have worked to face my reality with my eyes open and without losing the name of action, I have found myself looking in many places for how to do that. One such place is my Jewish heritage. With Rabbi Margaret’s help, I have taken up weekly Torah study with a dear friend (in
English; I can’t read Hebrew). I fulfilled a goal that had long been in my mind of taking a Hebrew name, and I decided to do that before I learned that some Jews change their Hebrew names when they are seriously ill to try to fool the angel of death. As part of the process of taking a Hebrew name, I
immersed in a Mikvah (a Jewish ritual bath) for the first time. I now meet regularly with a rabbi from the Jewish Healing Center in San Francisco.
As I read Torah, I find things that help me maintain perspective on healing and faith. In the part of Genesis called Mikeitz, the following commentary appears in Etz Hayim version of the Torah: “One of the lessons of the Joseph story . . . is that life is cyclical. Good years are followed by lean years, adversity is followed by success, rejection yields connection, winter gives way to spring and summer, only to return again. “What can be learned from this parashah is to prepare ourselves in the good days, days in which holiness is revealed, to set the light in our hearts, to be there in times when holiness seems far off.” The author of S’fat Emet answers his own question: “We must store up resources of faith, even as the Egyptians stored grain, to nourish us spiritually when events turn against us.”
From Rabbi Eric Weiss of the Jewish Healing Center I have learned to return, either physically or in my mind, to the places in nature that feed my soul without being nostalgic for how I used to be in those places. Instead, I see the beauty in these places in the way I can now, given my physical limitations.
I also spend time with friends, though this has posed a greater challenge for me in some ways. My energy is not what is was, and I need to be careful not to overdo either physically or emotionally. But there is the mitzvah (good deed) of visiting the sick, called bikkur holim. I have struggled with this directive, as the object of the mitzvah. Finally, I concluded that the directive about the mitzvah is directed at the visitor, not the person who is ill. While it is a mitzvah to visit the sick, that does not require the person who is ill to see everyone who is trying to fulfill it. I have it on good authority from the Shulcan Aruch that the rule is that, if you go to visit a sick person who is not up to seeing you, you should stay in the hall and sweep the floor. My friends have been mostly understanding, and are kind of enough to metaphorically sweep the hall floor from time to time.
I have also learned that support of my community — people I know and even people I don’t — is enormously important to my spiritual healing. When people tell me they have said the Mi’ She’Berach for me, it touches me and helps me. According to the Etz Hayim Torah commentary, we say this prayer for two reasons: to ask for God’s help in healing those who are ill, and to notify the community who is ill and in need of the support of the community.
When we said this prayer last week at Rosh Hashanah services in Mendocino, California, the number of names recited as in need of healing was startling to me. The number of calls on the community – and most communities, I imagine — for acts of support and loving kindness, which I experience whenever I am with the Jewish community in Mendocino, may seem daunting. But as one commentator put it, the prayer seems to act less as a wish for literal fulfillment of a petition and more as means to set one’s heart in the right direction. Invoking God’s blessing can be a boon, regardless of what God does or does not do — because it enables the person who is ill to be joined in her suffering by divine presence.
When Rabbi Weiss blesses me at the end of our monthly sessions, I feel that presence. When this congregation says the Mi’ She’Berach, I feel it, too.
In the Debbie Friedman version of the Mi’ She’ Berach, the verses end with the phrase “and let us say amen.” I believe that when we call together for healing and spiritual connection, it helps those of us who are ill. All of us are deeply grateful.
And let us say “amen.”