The Heart Knows the Way: Connectedness and Breast Cancer

Two years ago I met ten women, each of whom was beginning to deal with a diagnosis of breast cancer. As facilitator of their support group, I listened as Emily talked about losing both her breasts at the age of thirty-one, and Lenore wondered how to live with the agonizing guilt that she “had brought cancer into the family,” putting her two twenty-something daughters in danger, and each of the group members experienced the nausea of chemotherapy and the flat out fatigue of radiation treatment, and everyone lost her hair.

Now, two years later, the group continues. Most of the original ten are survivors. And I feel privileged and enormously grateful to them. I watched ten individuals become a community. I saw them learn to value their lives because of the affirmation and respect they experienced with and from each other. I watched as they learned to live without desperation because a loving kindness came to balance their terror. Encountering a disease, which might end their lives, I saw them learn connectedness to life and to each other.

The sudden and unexpected encounter with a life threatening illness contains real and important information, even wisdom, for us all. There is no guarantee that protects any of us against that event. The women in my group are like all women everywhere–daughters, mothers, wives, friends, lovers, with professional careers and without. Some ran five miles a day before and after their diagnosis, others preferred to read a book. Everyone worried about what to eat and when to eat it. But when the lump turned out to be cancer, each woman felt much the same way–betrayed by her body. Each discovered that being a good person, being a “good girl” and following all the rules, was not enough to stave off the disease. And each experienced being “on the other side,” that place that nobody much talks about, when questions about how to live become pressing, when we each come face to face with our own mortality. This is a place many people, both men and women, arrive at around the age of fifty. Then it’s called a mid-life crisis, but as the two thirty-year old women in my group discovered, that’s only a name given to an existential experience we all have, perhaps we all need to have, sooner or later.

What is connectedness? What do we feel when we feel “connected?” It became clear to us that not all the ways we relate to each other are connected. Women always have been involved intensely with other people in their lives and some of that involvement is not good for our bodies or our minds. Indeed, we came to realize that most women have been taught to be too connected, taught to give too much of themselves away, keeping only that part that shames them, the part they believe no one else could ever want. This kind of connectedness is really self-sacrifice, or over-connectedness, and from what I have observed in two years of working with women who have breast cancer, over-connectedness can be bad for our health.

Metaphorically, it is as though cancer is a disease of the emotions as well as the body, and metastasis is when emotions cross the fragile barrier between love and merger, when we offer ourselves as hosts for someone else’s distress, when someone we love more than we love ourselves invades us. Not because that dear one wants to, or even has to, but because we have made a mistake about love. It turns out that loving another person is more about two people loving than about one person giving herself away, that a genuine act of love looks like mutuality, not yearning and suffering. In fact, it just might be that a really loving person looks like what women have been taught is a selfish person, that a really loving person is one who loves someone else with whom she can feel safe enough to respect the boundary that separates them.

In a peculiar way, women have learned to confuse merger with love, so the boundaries which allow us to be strong and self determined can make us feel like we’re demanding or cold. Instead, love may have more to do with a promise, tacit or explicit, to try our best not to abandon someone else, nor to disrespect or discourage, rather than never to be different or separate. When women are over-connected, difference is very hard and genuine love is unavailable. Sameness replaces love, self sacrifice substitutes for bringing one’s whole self into relationship, and dominance masquerades as disapproval. Community, the coming together of full human beings, full of themselves, willing to place those selves in the service of another person and willing to make use of the other selves offered to them in turn, is absent.

In my work with breast cancer patients and survivors, I have learned that real selfishness is the other face, the Janus mask, of over-connectedness. Women are really selfish when they give themselves away, when nothing is left for the future of the relationship. The price asked in return is way too high. Although women don’t know they’re asking, would be appalled to see the price tag dangling from their emotional self-immolation, they are charging it nevertheless. For example, when a member of our group insisted on maintaining an attitude of unbreakable cheeriness as she experienced grueling treatment, she believed that she was shielding us from her pain. She sacrificed her real life for the group by silencing her real feelings. But the more cheery she became, the more the rest of us plunged into terror and grief. We all were silenced because to speak about the full range of our feelings made us feel as if we were violating a lie she needed to survive. In effect, she signaled us that she really believed our kindness depended on her sacrifice. Freely given, freely received love does not exist in this equation. Blackmail–emotional coercion–is the reality disguised by self-sacrifice.

In a sense, over-connectedness is a sickness of the heart, which can be reflected in a sickness of the body. I am not suggesting that women (or men) are responsible for their cancer. There is too much evidence that breast cancer, as well as other forms of the disease, is associated with pollutants in our food, our air, in the very ground we walk on. Cancer can happen to any one of us at any time. But once the disease appears, getting better seems to be related to how genuine is the connectedness in our lives, even if “better” never becomes translated into cured, or even into many years alive. Connectedness is the wisdom that life is measured by its quality, not quantity.

Yet, there is research evidence supporting the idea that the communal bond my group developed could even extend their lives. Dr. David Spiegel, working with terminal breast cancer patients at Stanford Medical Center in California, discovered that the women in his group, whose prognosis meant that in a short span of time death was certain, lived on, some nearly twice as long as their doctors believed was possible. Dr. Spiegel came to understand that their social bond did it. And when they died, many did so with grace and honor. They left a model for their children and for the people they loved, suggesting that death could be experienced as part of a whole life.

Genuine connectedness really needs to be described as well as defined. Looking around at my group, I see that no one helps in the usual way. There are no soothing noises, no “there, there, it will be all right.” It will not be all right. These are survivors, completely and absolutely aware that there is no cure for cancer at this time. And in that absence of false chatter they demonstrate their connectedness. Each woman is present with every other woman’s pain and fear. No one flinches. No one turns away. They spread for each other a net of community, a promise to bear witness to the worst even as they hope for the best.

When genuine connectedness exists, it looks like the capacity to support that which feels unendurable, and in that support, the un-endurable becomes part of ongoing life. But support does not mean the boundary between oneself and someone else vanishes. Instead, that boundary becomes, if anything, more pronounced. In my group, each woman has become more visible, more filled with her self, precisely because her effort to support her friends means that she must be fully present. I see that Rose gives what Selena can’t, while Selena gives what Kathryn needs, while Kathryn is illuminated by supporting Rose. Each woman grows into her own unique and special personality–then, and only then, can her supportive presence be experienced.

In a similar way, genuine connectedness means developing the capacity to accept support. At first, when our group began, it was very hard for each member to accept support from anyone else. Receiving kindness made everyone feel frightened and vulnerable–after all, for most women, taught to give rather than to receive, self-protection means that kindness feels far more killing than cruelty. Kindness means really trusting someone else. Yet, gradually, as each woman became more herself and less of other people, each developed the capacity to receive, to take in fully what was offered fully with no strings attached at all. No one would try to fix it, no one would try to take over by taking care of. Kindness became an act of real love, and could be accepted as such, one heart speaking to another. And developing a capacity to receive support led directly to yet another aspect of connectedness–the capacity to grapple with one’s own fear of closeness.

As these women became more certain that no matter what the stain of disease they revealed they would be accepted, they each became stronger because they became able to see themselves through the eyes of the others. They began to be as kind to themselves as they were to each other. They began to value their own specialness, to know that even the parts of themselves they had always loathed, the parts that caused face burning, soul twisting shame, were special because those parts would not drive anyone away–and everyone had her own version, everyone had some form of the disease, some part of herself she wanted to hide.

Looking around at my group, I saw women who had developed the capacity to experience and tolerate another person’s pain, without the desperate need to take it away by taking it into themselves. They became less frightened of each other’s pain, and less frightened of their own, both physical and emotional. And learning not to fear each other’s pain also meant developing the capacities for compassion and respect. Most importantly, my group learned that expressing themselves fully, even if that meant disagreeing with each other, could strengthen a relationship instead of destroy it. It was their committed community that did it. Each knew and conveyed to all the others that a disagreement happened in the context of the group. No matter what, the group would continue. This was a learning directly related to the presence of our invisible member–death. Since it was a real and possible fact that leaving the group meant dying, no one feared that disagreement would mean the end of relationship. Since no one would be abandoned because she disagreed, everyone became able to ex-press herself.

What I saw in my group of breast cancer survivors occurs in almost every group that becomes a genuine community–therapy groups, self help groups, women’s groups, book groups, even the group we call a family. The difference was located only in one place. In my group of survivors, death was and is an acknowledged member. And because of death’s insistent presence, life also became a member, realized in the communal bond. In this group there was not so much time for ignoring life by permitting over-connectedness or false community. Each of our meetings was significant simply because it happened, a real event in our real lives. I came to appreciate how much that sense of immediacy counted, how the presence of death made each one of us important and special, individually and together. And I came to understand that real connectedness was good for my health and life also, who did not experience a direct encounter with cancer, as good as it was for the other women.

What we all learned was that after you’ve faced it, the life threatening illness, or the knowledge of death, you can say anything. You can be yourself. And the self most of us really desire to be is a self in genuine relation to others. Saying anything, we mostly talked about our friends, and children, and lovers, and husbands, and work, and the condition of the world. Just like any other group. But we also listened when death talked, and we talked back about fear and loneliness and grief and loss. Amazingly, remarkably, the talking turned us into grown up human beings, weighted with existence–alive.

My group of survivors is now in its second year, too soon to know whose disease will recur. We all hope that all of us will live on and on and on. But even those of us who don’t are now awake. If we’re really lucky, we won’t forget what we’ve learned. We’ll take it into our everyday lives, where the formerly trivial will become important because we’re paying attention while we can. And because we have a real community in which we are really welcome.

© Center for Progressive Development, 1997