The world is imperfect. Things aren't fair, or just, or ideal. Things happen that we have no control over. Politics shift, stability is lost, people leave. It’s part of life's ebb and flow - no raises this year, a new healthcare system goes into effect, a tree falls on your house. You adjust, but it's not easy. Even as we try to say things like, “What happens, happens,” or “I'm sure we'll see the upside eventually,” we also feel deeply sad, helpless and obligated to review our behavior, to see if “The fault lies not in the stars, but in ourselves.”
We torture ourselves thinking of the paths we could have taken. If only we had invested differently. If only we'd spoken differently with our bosses. If only we had voted differently. If only we had trimmed renegade branches from that tree. The if-onlys and what-ifs could drive us crazy, but a part of us needs this argument, this self-blame; it gives our loss a target. This could have been avoided, we tell ourselves, and we could've done something to stop it. Blaming ourselves for missing something, or not doing something, helps us believe that we are in control. Even if we know it is a myth.
Even the most devoted and vigilant cannot prevent cancer. Those of us who are lucky enough to be spared this tragic affliction in our immediate circles look on from afar in terror as others endure illnesses, therapies, experiments and eventually, the painfully slow or rippingly fast ebb from life – leaving a family unit forever altered, and never for the better. While cancer tears at human tissue irrespective of age, in children, cancer seems downright evil - robbing the far-too-young of experiences, of happiness, of the silent placidity of a life that just is, even when nothing else is happening. In children, cancer takes what it wants - the pulse of the bloodstream, the steady inflation of lungs, the firing of synapses that produce exquisite and innocent thought - the movements that even in a child's inactivity, are active and moving and growing. Cancer strips them of their vitality.
In my circles, there are unfortunately many families suffering loss in various forms. Amid all that pain, one name has surfaced over and over. Over the last few months, many of us have been following the story of “Superman” Sam Sommer, who was battling a particularly aggressive strain of “ninja” leukemia. (Sam's parents, Michael and Phyllis, both rabbis and bloggers, blogged throughout his illness at http://supermansamuel.blogspot.com. Sammy fought as much has he could, but ultimately, 520 days after the initial diagnosis, the doctors informed the Sommers that the only additional measures available were palliative.
Since receiving the terminal diagnosis, Sammy's family did everything they could to fulfill the things that Sammy wanted to do, among those things, visiting Israel as a family in November. While the family managed to find a few moments of connection during the trip, Sammy's quality of life was diminishing; he spent most of the visit in a wheelchair, weak and uncomfortable.
The motivation for the trip was primarily to fulfill an item on Sammy's bucket list, but also to introduce the other three Sommer children to the place their parents met, as a whole family. “My children will carry this memory of their very first time in Israel deep in their souls,” Phyllis wrote in her blog account of the trip. “They will always hold this as a place that they experienced together as a foursome. When they visit again, when they study there, when we talk about Israel at home - they will feel the presence of our whole family. This is the accomplishment of our goal.”
Phyllis has always been honest with us about her process in coming to terms with this impossible and inconceivable loss. We all read, some of us frightened and many of us sobbing; each piece was punctuated by photographs of her family, and most frequently of little Sammy. These were postcards from the end of a life, ending way too soon.
And although many of us stepped up to help Phyllis, Michael and the family emotionally, raising awareness of pediatric cancers as well as funding for research through the #36rabbis Shave for the Brave initiative, we all knew that Sammy’s time was limited, and that there was nothing else we could do. There was nothing else the doctors could do. There was nothing else Phyllis and Michael could do. We all just had to wait for it to happen.
Sammy died on December 14, and over 1,000 people attended his funeral in person in Glencoe, IL. Many more of us expressed our presence/support to the grieving family. We are donating in Sammy's name, honoring his brave fight as well as the strength of his grieving family. More than 36 rabbis have signed up, including Sammy's parents, the initial goal of $180,000 has been raised, and a second goal aims to double that amount.
It may help some of us feel a little better about finally finding something we could do. But it doesn't bring Sammy back or give him the experiences that he should have had over the next 112 years. As Rabbi Rebecca Einstein Schorr, a close friend of the Sommer family, wrote announcing Sammy's death, funeral and shiva information, “We will not celebrate; we will mourn. Together. As we always have. He is not in a better place because how could there be any place better than in his parents’ embrace? And God didn’t want Sammy with Him; God weeps with us in our time of sorrow.”
There was so much we couldn't do. But we can work to tether his family to our world, help them feel rooted and loved and supported. We can circle the wagons around them, protect them while they are so raw and vulnerable. When they ask for specific support, we can mobilize to give it to them. And if we listen, we may be able to discern an ask, even if it’s not formulated as a direct request.
In her most recent heart-rending post, "Distracted," Phyllis noted the influx of messages and articles about Sam:
I can't keep up with the messages and emails and texts.
I am overwhelmed with them.
I think it is in a good way.
I scroll through my Facebook feed, my email, my texts... and cry.
My friends, my sweet wonderful friends, who are doing what they do best.
Writing…sharing…posting….and of course, fundraising.
So many posts.
Articles….oh, so many articles.
(Would a good mother keep a scrapbook? A good blogger might have a list of links.)
That Phyllis is a good mother and a good blogger is beyond reproach. But that aside, helping to keep a list of these posts and articles, organize them into some sort of order so that they can be easily located referred to later, is something we can help with.
On reading Phyllis’s recent post, Leah Jones, a Chicago-based expert in social, digital and emerging media who had met the Sommers but acknowledges that “Like thousands of people around the world, my relationship with [them] is largely online,” began curating posts relating to Sam Sommer over at her blog. Organizing them by category and asking for additional submissions via Google form is one small way to help Phyllis and the Sommer family to create this memory archive as pieces inspired by Sammy and his brave, loving family continue to flood the internet. (You can contribute your links – as I will after this piece is published - here.)
It’s one small thing that we can do. And we'll stay tuned to Phyllis's posts, reading the words as well as between the lines, listening to and supporting her in the months and years ahead. Because it's important, because it might help Phyllis and her family, and because it is something we can do.
Esther D. Kustanowitz is a Los Angeles-based writer and consultant. She has been blogging for nearly a decade (http://myurbankvetch.com)and is working on a book, “Nothing Helps (But This Might Help): A Guide to Loss and What Comes After.”
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