Letty Cottin Pogrebin, a legendary figure in the women’s rights movement, has embarked on a new crusade on behalf of sick individuals and the people who care about them.
Her new book, “How To Be a Friend to a Friend Who’s Sick” (PublicAffairs) pinpoints the awkwardness and inadequacy that many people feel when trying to comfort their sick and bereaved loved ones. “Illness is friendship’s proving ground,” she writes. Yet why do so many of us fail that basic test?
Pogrebin, 73, came up with the idea for a book about “illness etiquette” while she was being treated for breast cancer at Memorial Sloan-Kettering Cancer Center in Manhattan. In the waiting room, she conducted dozens of interviews with her fellow patients about the ways their friends and family both supported and failed them during their illnesses. These interviews, plus Pogrebin’s reflections on her friends’ responses to her own diagnosis, make up the backbone of the book, a “dos and don’ts” of comforting the sick that includes her mantras: “act and ask” and “ask and act.”
Pogrebin talked with the Forward’s Naomi Zeveloff about her policy of total transparency, her relationship with her mother and Judaism’s conflicting messages on caring for others.
NAOMI ZEVELOFF: Why are people inadvertently insensitive to their sick friends?
LETTY COTTIN POGREBIN: We don’t really get beyond a kind of basic illness etiquette in this culture. We say things like, “I’m sure you’ll be okay” or, “God only gives you as much as you can handle,” or all the clichés that you and I have probably said and have certainly heard that aren’t helpful. You say them because you are at a loss for words; you are afraid of being too positive because that is fake. But you are afraid of being too honest; how dare you ask questions about their test results or symptoms?
My bottom line in this book is to hope that there is a new illness etiquette that simply goes straight for the candor and says from the minute someone is diagnosed and they tell you about it, that you ask that you can establish a policy of absolute honesty. You say to your sick friend, “Tell me what you want and what you don’t want, because if I am going to have to guess I am going to get it wrong and it may become burdensome to you.”
For example, Jewish people are taught to visit the sick, bikur cholim. But what if bikur cholim is in conflict with Hillel, who says do not do unto others what you would not have done unto you? What if you don’t want to be visited because you are in a funk and the idea of seeing anyone is anathema or you are feeling hideous or you are oozing and strung up and in bandages and you don’t want to be seen? If you have established this honesty policy you won’t visit inappropriately. The person won’t feel they have to receive you because otherwise it looks unfriendly. You will be on a plane of absolute sincere communication from the start.
A look back at breast cancer news from the past year reveals that a lot of what we thought we knew about the disease and the advocacy work surrounding it has been wrong.
First an ASME-nominted story by Lea Goldman in Marie Claire pointed out that, despite the roughly $6 billion raised annually for breast cancer research through pink cashmere sweater sets and 5k walks, there has been essentially no progress made.
Goldman writes: “Yet what many in the breast cancer community are loathe to admit, despite all these lifesaving developments, is that, in fact, we are really no closer to a cure today than we were two decades ago. In 1991, 119 women in the U.S. died of breast cancer every day. Today, that figure is 110 — a victory no one is bragging about. Breast cancer remains the leading cancer killer among women ages 20 to 59; more than 1.4 million new cases are diagnosed annually worldwide. Roughly 5 percent, or 70,000, breast cancer patients are diagnosed at a late stage, after the cancer has metastasized — that rate hasn’t budged since 1975, despite all the medical advances and awareness campaigns.”
Then there was the Susan G. Komen kerfuffle. The prominent breast cancer research and advocacy organization committed reputational suicide when it announced this past January that it was cutting off funding to Planned Parenthood. Komen, after an explosive social media-fueled backlash, ended up reversing course four days later, but the damage was done. Many previous supporters can’t move past the foundation’s politicization of breast cancer.
And now we have the latest news in the category of “you thought you knew breast cancer but…” This time, though, there is a little hope.
If you want to show someone you care, you need to show up. Virtual empathy does not replace your presence; it is merely the easy way out of trying to be kind to a fellow human. Writing a few words on a website or tracking the progress of an ill person are certainly thoughtful gestures. The problem is that there are those who, having made those gestures, will believe their quota of meting out kindness to another has been fulfilled, that they need not do more.
This is where, for lack of a better term, “internet empathy” can be dangerous. Jewish tradition teaches that some things have no limit; kindness is one of them. So why am I worried about the supplanting of real chesed (loving kindness) with the virtual brand?
I’ve been following some of the articles — including one by Sisterhood editor Gabrielle Birkner — that have appeared in the aftermath of the tragic death of 2-year-old Ayelet Galena to a bone marrow disease. The authors of these pieces write about how they have become better people by reading, along with 14,000 others, of the progress of this critically ill child. If the family chose to share their lives with others in such a public way, and get support from them, that is their choice. I hope it helps them to know so many take an interest in their suffering and tragedy.
Where I, and I hope others as well, become disturbed is not in the impact on the family but on the gawkers, who believe they are assisting.
As a two-time breast cancer survivor, I’ve been on the receiving end of the Jewish community’s response to serious illness for almost 10 years. We are an incredibly charitable people; over the years, I have been inspired by the lengths to which we will go to encourage Jewish men, women and children to help the sick. We train our rabbis on sensitivity in speaking with ill congregants. We teach our young ones the mitzvah of bikur cholim, or visiting the sick. We encourage our community members to set up prayer groups to recite tehillim (psalms) and chesed organizations to prepare meals and offer childcare. I am grateful for all that the community has done for me, and for all those facing serious illnesses. But I think we can be doing so much more for ourselves.
Here’s an idea: Let’s use Jewish ritual and tradition to empower the thousands of Jews facing serious illnesses. I envision an annual “Day of Empowerment” — in the model of Limmud — during which organizations of all types, and Jews of all professional and personal backgrounds, come together for a series of interactive workshops.