CaringBridge Journal for Shira Ballon
Flying home from Chicago and a lovely visit with Shira, Marty, and of all people, Debbie! (Yes, it seems odd to "visit" my wife in Chicago, but she’s been there over two weeks now supporting Shira in so many ways—physically and emotionally above all. I don't question the importance of my lending some moral support on the day of Shira's first chemotherapy treatment. I also acknowledge that all the heavy lifting had been done before my arrival including, as I was en route, the surgical procedure to install the infusion port.
With that accomplished all of the truly challenging tasks of a long week were complete. The results of the pulmonary test and the PET scan were favorable. Not to diminish the significance of the first chemo, but Shira said that it was a much easier day than the one that preceded it. My impression of Swedish Covenant Hospital's infusion center was 100% favorable. Every single person from the receptionist to the oncologist to the nurses, the social worker, the art therapist, the cafeteria workers, and last but not least the massage therapist could not have been more pleasant, supportive, and competent.
It was a long day. The first infusion requires additional safeguards to assure the patient doesn't have an adverse reaction to the medicines. They placed Shira in a chair in a location that provided ample room for Marty, Debbie and me to be at Shira's side. We would take turns taking care of our own needs as well as Shira's (I walked to a nearby Greek restaurant to get her some chicken kebabs that she requested only to discover it was the place lampooned by SNL—"You lika da juice?")
It was comforting for Shira to hear the nurse’s comment that the port had been installed exceedingly well—with very little redness or swelling that is often the case. I suppose the highlight was the massage therapist giving us caregivers a rub as well as the patient!
After Shira's day in the chair the four of us managed to have a weekend film/food-a-thon, culminated by a sumptuous Fathers Day brunch that had me in a food coma until well into this flight! Marty’s hospitality and talent in the kitchen is beyond abundant.
I confess, waltzing in and out as I had the good fortune to do may not make me the most reliable witness to what has transpired and continues to. Sure, there were difficult moments for all of us. I wouldn't want to misstate the physical symptoms and emotional challenges. Those moments, however, seem to be obscured, at least for me, by Shira's courage and resilience, Marty's devotion, Debbie's selfless nursing/mothering, and the unending support of family and friends from all over.
Shira was feeling well enough to contemplate going to work for a bit on Monday. Debbie plans to return to Palo Alto on Tuesday (I think she misses her garden.) Parting will not be easy, but will be eased by the continued support from Shira's posse in Chicago. Brother Jake and sister Becca plan to be on hand for the next 2 infusions respectively, and then Debbie may return. Time will tell when the treatments give Shira relief from the debilitating symptoms of the lymphoma—soon, we all pray.
I have begun this journey before. That may seem discouraging, and it may be reassuring. I believe in cycles. I look at Rosh Hashanah, the Jewish New Year in the fall, as an opportunity to begin anew, and I have often felt that the principles underlying that new beginning are applicable to every day. No less so to the days of springtime that also signal new beginnings. The Passover holiday, coming midway between one Rosh Hashanah and the next, a retelling of the birth of our people, is the ideal time to set forth on a new venture, and even a restart.
Five years ago at this time of the year I entered a medically supervised weight loss program. I spoke about how I wanted it to be a spiritual journey as much as a physical one. I managed to lose a lot of pounds, reaching the milestone of a "normal" BMI for about 20 minutes (literally). I felt I had arrived at the Promised Land, but that was an illusion. (I've come to consider the whole notion of arrival as an illusion—an important lesson going forward.) Even though I was part of a program that spoke a great deal about maintenance, their approach to it did not connect with me in a way that worked. I have managed a semblance of spiritual growth in these years, but my slow steady weight gain suggests that has not carried over into the physical plane.
So, how to begin again? That's not really the first question. The first question is whether to begin again. The answer to that comes to me when I step on the scale or try to wear some of the "skinny clothes" that I bought four and a half years ago. (There are of course the obvious health concerns that are, arguably, more critical than a particular number goal or a fashion statement). While some might look at the evidence and throw their hands up in despair recognizing the possible futility of it all, my response is, “Yes! Let’s try something else. Let’s do something different and expect different results. Let’s keep searching for that illusive and sustaining link between spirit and body.”
When I took my physical/spiritual journey, and when it seemed that I had actually accomplished my goal, I started writing a physical/spiritual self-help book. At the time, the metaphor of the Exodus seemed apt. We are all slaves to something. We may hesitate to lead ourselves to freedom, as did Moses. But with determination and divine help we can cross that Red Sea and sing a song of salvation. We can even take further steps to arrive at a Sinai moment when the revelation of how we want to live on this planet comes to us — creating, perhaps, our own Ten Commandments; building our own sanctuary in which to feel the divine presence; feeding on God-given sustenance (manna), taking not too much nor too little. The metaphors are all there, so maybe I’ve just been going through “forty years” of wandering. Like the Hebrews of old, I seem drawn back to my former life as a slave rather than to the arduous but promising journey that may lie ahead. For the Hebrews, and for myself in this time, this may be due to having an unrealistic notion that freedom was a “one and done” experience, or that it would be without its hardships. Freedom is not easy! It's just different. It takes continued vigilance, and in some ways is more challenging than mindless servitude. In the Torah an entire generation had to die before the nation could experience genuine transformation from slavery to freedom.
What must die in me to give birth to such change?
One answer to that question is to reset my relationship with food and my body. That brings us back to the earlier question--how to begin again. One suggestion I received comes in the form of a popular program called The Whole30. Popular programs in themselves seem problematic. While I haven’t fallen for every fad diet that has come along over the years, I have done enough of them to know better—especially the ones that say “this is not a diet, but a change in lifestyle.” So why try another? Am I Charlie Brown hoping Lucie will not pull the football away yet again? Perhaps. But it seems worth examining this systematic approach to discovering the effects that specific foods have on my body and my feeling of wellbeing.
I continue to look for the spiritual connection. The one I have chosen is to count the 30 days of this plan while simultaneously, according to tradition, counting the Omer, the 49 days between Passover and Shavuot, starting tomorrow on the second night of Passover. I have never successfully counted every one of these days. Is there a reason to assume that I will be able to do it now? Just add that imponderable to the mix. Will connecting these spiritual and physical journeys create a synergy that sustains them in a way that neither alone might accomplish? We’ll see. Certainly, declaring this, as I am doing now, raises the stakes. That self-imposed pressure may or may not be helpful. What may indeed be helpful is if you support me perhaps with some encouragement and especially by refraining from putting off-plan temptations or other stumbling blocks before me.
After the 30 days of refraining from sugar, alcohol, grains, legumes, and dairy there are additional days in which to undergo a methodical process of reintroducing these foods to discover how my body reacts to them. Wouldn’t it be something if I concluded that process at the end of the 49 days, just as we arrive at Shavuot, and that and it results in my having a “Sinai moment” and a revelation of a new set of commandments by which I choose to live? That would really be something!
I sat, chanting healing words at the bedside of my buddy, Greg. Later, I looked around the dining room in which his family had set up his hospital bed. Even though there was much in the field of vision to take in, little of it registered. Oh, I know there was some sort of artwork on the wall. There must have been furniture and lighting and drapes and carpeting. But I couldn't tell you what any of that looked like. On the other hand, I have a very clear image of Greg, his thin body, listing involuntarily to his right as he lay back on the tilted mattress. I found myself drawn to the appearance of his teeth when he occasionally bared them. It almost seemed like a brief smile. Maybe it was less of a response to pleasure or humor, and more likely a reflexive grimace. His teeth may be the only part of him that hasn’t withered in recent months. They are a beautiful reminder of who he still is, even as we try to resist grieving too soon the loss of the person so many of us already miss.
I suspect that my soul, in some ways perceived and continues to process this visit in a manner that defies my conscious understanding or explanation. Part of the reason for this may be due to my stubborn denial about the reality of the situation. At the same time, I'm not unaware of the implications of his return to his home from the hospital, having received no further treatment, and now under hospice care. We all know what that means. We don't know how much time will be allotted to Greg. (True, we don't know how much time is allotted to any of us.) And we have already started making tentative plans for his eventual memorial. Is that crass? I hope it's really just an expression of kindness, courage and love to give thought to how to honor a kind, courageous, and loving man as we all face what we would prefer not to face.
As I contemplate this day I reflect on my many blessings --
In synagogue, each Shabbat morning, the leader of our service asks us to say out loud some of the blessings for which we are grateful. We always hear some, but by no means the full flood of potential responses. It's not just that people are reticent to speak in public, although that may be a factor. I think that it can be hard to enumerate one's blessings. They are either as numerous as the stars, and thus impossible to grasp, or, perhaps, as happens to the stars in the light of day, we are mostly blind to them until darkness falls upon us. So on this day, a day in which I shared sadness and joy, disability and strength, grim resolve and abiding optimism — I am truly grateful to be alive, and to be among extraordinary people — people filled with energy and with love.
Greg reminds me of my brother Jeff, of blessed memory. When Jeff was ill and Greg was still the robust presence we all remember, the two of them met at my daughter's wedding. I don't know anyone else who spent as much time talking with Jeff that day as did Greg. Two compassionate souls — it must've been quite a conversation. In an unkind bit of irony, these two good men were each stricken by a similar brain cancer, and yet, lived what days they had as emissaries of love. I have often wondered why it seems to take a fatal diagnosis for people to be in a position to espouse love without being thought of as a little bit crazy. I continue to ask that question, and I continue to challenge myself to live up to the answer.
This past weekend Debbie and I traveled to the Denver suburb, Broomfield, Colorado, for the ALEPH Alliance for Jewish Renewal Shabbaton (Sabbath study weekend) and my graduation from the ALEPH Hashpa’ah: Training Program for Jewish Spiritual Directors. Simply put, after three years of study and practice, I am a certified Spiritual Director. The Hebrew term that ALEPH uses for this is Mashpia Ruchani.
It was an emotional weekend. Much of the joy came from just having Debbie at my side. It was very satisfying to introduce her to my friends and colleagues and teachers after a ten-year affiliation with ALEPH. I enjoyed hearing her describe what she saw as she visited this rarefied environment for three days. She said she saw a lot of love, spirituality, and intensity in this group.
The graduation Saturday night was pleasant and joyous, but far from the most emotional aspect of the weekend. For me, there really were two moments that stand out above all others.
The first was a blessing that David Aladgem, a rabbinical student, gave to our graduating class at the conclusion of the afternoon service on Friday. I asked David later if he had a written text of his remarks to share. He said it had been extemporaneous and, moreover, he did not remember what he said. He then quoted Rabbi Shohama Weiner, the founder of our program, as saying: “When you can’t remember a blessing, even after trying, that means that you were channeling the Source.” “And, quite frankly,” he added, “that is what it felt like.” I would have to concur. I stood with my classmates, arms encircling one another, huddled under a chuppah (bridal canopy) while his words so deeply penetrated my heart that tears flowed down my cheek. In this I was not alone. Part of David’s blessing was inspired by words from Rabbi Lawrence Kushner’s book Honey From the Rock.
And Jacob had a dream
After David read these words, he offered each of us a spoon to dip into a bowl of honey so we could have the sweet sticky substance melt on our tongues as the blessing was conferred. In his blessing, David made reference to the delicate work that we do as companions on the spiritual journeys of others. Our job is to assist in making their connections between heaven and earth. To do this, as we lovingly discern when to speak and what to say, we too must reach gently for that heavenly connection. When this happens, radiance like honey truly flows down from on high. David’s blessing was that we may achieve that divine flow. And, of course I am broadly paraphrasing, because, like David, I do not remember exactly what he said. I just know how sweet it tasted.
The other emotional highlight occurred in a private moment.
Throughout the three years of Hashpa’ah study I have had a continuous study partner (chevruta, in Hebrew) in my friend Ira Wiesner, attorney and future rabbi from Sarasota, Florida. We met at the airport upon arrival on the first day of our program. Compared to him, I was a veteran ALEPH student, for this was his very first ALEPH experience. I noticed his deer-in-the-headlights look and, naturally, offered some assistance. It was a gesture that has since earned many dividends. This weekend, in an extraordinary act of generosity, Ira made a gift of a book of Psalms and a personal, handwritten note to each of his classmates. He handed these out to us Saturday afternoon after our graduation rehearsal. I took my book and note up to my room before opening them. His note to me was not a formulaic farewell or simple acknowledgment of friendship or congratulations. It was a piece of holy text in and of itself. It read:
I read it through once, somewhat stunned and moved. Then I tried reading it aloud to Debbie, and the tears flowed even more freely when I voiced, "Yesh? He's my son!" My father (the Reform rabbi to whom Ira referred), my mother, brother, and other family members of blessed memory had already entered my consciousness during the weekend. This was an unanticipated and powerful reinforcement of those connections. Ira so lovingly and poignantly gifted me not only with his blessing, but also with the blessing and the love of my dad.
One never knows when a ladder may appear where before there was only the void. I know, from talking to Ira, that his words flowed from the divine source, not unlike David's blessing the day before. Ordinarily, coming to the end of three years of study might engender some melancholy at the farewells. I sense that there was less of that on this occasion in part because so much of our work has been done virtually, but more so because the love that Debbie observed among the class will endure.