Last week, I was invited to give a talk at a holiday dinner; when invited, the request was for me to share some of what I’ve been through this year. I wrestled a bit with what to say, and what ultimately came out was a kind of paean to community. To the sustaining force and healing power of community in various forms: family and friends, our synagogue community, the community created here online as a result of this blog, and the solidarity of being with others who are confronted with the same struggle. As I feel so deeply blessed to be able to draw from the deep wells of these resources, I wanted to share a few of the reflections I made in my talk:
As the news got out about my breast cancer, I was overwhelmed—quite literally bowled over—by the amount of love and support I was flooded with. Judaism is often characterized as being focused more on deed than creed; that is, that it is less concerned with belief or pronouncements of faith, more concerned with action, with what you do. Everybody wanted to do something; sometimes if I turned someone’s offer away, I would get responses like “You know it’s a mitzvah to let someone do a mitzvah for you.”
A medical advocate I recently consulted with said that I’m probably only the second person she’s ever dealt with that might actually have an overabundance of support. At the beginning, it was really hard to accept help. As someone who is used to hitting deadlines and getting things done, I had a very hard time accepting that I would need help with parts of my life that I was used to handling just fine. But over time, and in multiple ways, I learned how to accept what people were offering, I stopped saying, “no, no, it’s fine” and starting saying, “yes, OK, I’d appreciate that.” I deputized someone to run a meal and childcare calendar; when there was an embarrassment of riches, I encouraged people to direct their giving energies to other people in need. But once I was able to open myself to what the community wanted to give, it sustained us; it deepened my friendships with people; it showed me that maintaining a veneer of invulnerability is not always a good thing.
When I started my blog, I wanted it to be a vehicle of communication, but also a way to keep certain parts of my experience private. A friend of mine, incredulous, said, “you want to keep privacy, so you started a blog?” As paradoxical as that might sound—it has worked.
But as I opened up about how I talked to my kids about the disease, or my fears about loss, the blog has done something else too. It created a community around writing—one that began going out to the synagogue community, but as online things tend to do, it would get passed on, and I’d hear from friends of friends, colleagues of my parents or of Micah’s who read it. Distant connections in far-flung places would contact me after reading it and people began writing me about their own deeply personal experiences. A congregant would tell me about her own struggle with breast cancer years before, which I would never have known about, or a parent from my son’s school would reveal that she lost her mother when she was eight. It brought acquaintances close and close friends even closer, because they knew what was on my mind. It opened a new dimension of community—one beyond small talk, where people felt some relief in not having to pretend that ‘everything is alright’, but where they could acknowledge hurt and pain—or gratitude and grace. Almost no one used the comments function on my blog, so it didn’t spark discussion that way; but I got to have some much more meaningful interactions with people on the basis of the writing I did.
Many studies have repeatedly shown that being part of a community, having a confidant, having social support improves survival for cancer patients. Let me repeat that: if you have cancer, your life expectancy goes way up if you have people around you that you can confide in and rely on. The evidence for this is well founded. And the reasons are many: starting from basic things like having friendship and love around you mean you’re less likely to suffer from anxiety and despair and you’re more likely to be able to complete treatments if you have help getting there and getting through it. But here’s the other thing. While chemotherapy, for example, is the most visible and recognizably difficult part of being treated, it is not the worst part of this. Cancer is psychologically devastating, because it undoes the feeling of trust you have in feeling well. I had never felt as healthy and fit in my life as right before I was diagnosed. I always say you realize what a strange thing cancer is when you try to explain it to a four-year-old: “Well, you can’t see it and you can’t feel it; it’s not contagious, and you can’t catch it from other people; we don’t know why I got it…”
And it has a long, long half-life. Well after the visible treatments are over, we struggle with the aftereffects: anxiety that it will return, disappointment over our changed bodies, true grief about chemo-induced infertility. We need friends that will check in, pull us out of our shells, push us back into the onrush of everything else in our lives that is not cancer. Our lifestyles often need to change radically—for instance, regular exercise demonstrably extends remission and survival, but when fatigue sets in, it’s one of the hardest things to continue to do. One of the best things my friends could do for me is simply plan times to go on walks together; they got me moving and kept me in the groove.
But I want to emphasize that being present for someone is often just that: being present. One book I read advised those who are friends or family of a cancer patient, “don’t just do something, stand there.” I like this sentiment: there are sometimes concrete things “to do” but more often than not, the best thing you can do to support someone is just stand there, be present, listen.
So the message I’d like to leave you with tonight is: when you are sick, privacy is overrated. It’s perfectly understandable when one is feeling vulnerable to want to protect yourself. That’s where I started when I first wanted to keep it all a secret, as if if I did I could stop it from being real. But sometimes that means suffering alone, in silence. Beyond the ring of our nearest and dearest, community can come in many forms: through a church or synagogue, through an online blog or listserve, through the solidarity of others in your situation. For cancer survivors, who are used to being highly functioning, highly active, highly productive people, it takes some actual reprogramming to accept others’ help, but it not only eases your journey, it weaves stronger bonds with the people around you. Lean into it. For those of you who know people who are struggling with illness, don’t be intimidated to reach out, and to do so more than once; there is often overwhelming numbers of offers of support at the beginning and then things taper off; remember it’s not necessarily about “doing” something but just being present. Community doesn’t just mean living together, it means living together. We can live better, live longer, live more vibrantly when we stay close and hold each other up.
And hold me up you have—all of you, everyone who is reading this—and I really just want to thank you. Especially the members of Beth Sholom who have reached out to me in unexpected and unforeseen ways, sent me cards, passed me books, brought me food, said the Misheberach for me, or generally convinced me that keeping this to myself was a royally bad idea and leaning in to the support was the best way to get through.
I’m considering this the last post of 2012. I’m not sure what shape B’Matzav will take in the new year; I’m no longer in the same “situation” I was in when I started it. But I don’t want to forsake it, or the opportunity for dialogue it has generated. I think I will open it up to other topics, far and wide, to all the things I see now with new eyes, jetting ahead into all the multifariousness of life that has nothing whatsoever to do with cancer.