Emotional Paces of Caregivers: “The Actual Dance”

It is a rare moment in theaters large or small that a packed house gives its due in resounding applause after a show. It is rarer still that the audience sticks around because they want to talk about a show that has so moved them.

After one Saturday evening’s performance of The Actual Dance, a one-actor show that recently featured at the Studio Theater at Theater Row in New York, few audience members moved. Instead, these near-perfect strangers opened up to each other on the heals of a common and meaningful experience.

As a long-time family friend of the playwright and performer of The Actual Dance, I was given the chance to moderate the post-performance “talk-back” conversation. Though I would have attended and done my best for a friend whether or not the show was fulfilling, I was struck by the depth of audience participation and just how stirring they (and I) had found it.

People I had never met shared of losses in their lives, loved ones they had cared for, and spiritual questions that illness had evoked. One spoke of a sibling who had been in a serious accident and was currently in the hospital. A fellow member of the clergy spoke of his faith – and reliance on it in moments when he found himself supporting or advising congregants. I found myself in role as rabbi, rather than moderator, because of the pastoral outpouring.

What seemed evident that Saturday evening was how infrequently we give voice to caregivers. Those people who support loved ones day in and day out, as those loved ones contend with serious illness, are often so selfless in their devotion that we pay less attention to their experiences, pain, hurt, and worry. When we see them, we more often ask about their loved one than about how they themselves are doing.

With uncharacteristic openness about this topic, the Actual Dance shares the story of one caregiver, my friend Sam Simon, who supported his wife Susan from the time she was diagnosed with breast cancer through the end of her treatment. As Susan’s prognosis worsened with time, it brought up earlier sources of pain in his life. Sam makes the connection in the play between his enduring pessimism about Susan’s prognosis and the loss he had experienced decades earlier, when his mother had died of breast cancer. Crying at doctor’s appointments and social encounters even when Susan was able to remain calm, he does not hold himself up as a paragon of strength, but rather an all-too-human being taking part in a sacred and incredibly challenging effort to be present for his wife at a time when his own sense of well-being is being shaken.

So too does the role of caregiver change Sam’s experience of his synagogue community. It remained a clear source of support throughout Susan’s illness. But hearing his wife’s name read on the Mi Sheberach list for those in need of healing evokes profound pain and worry – which still seems present on his face years later when he sings the Mi Sheberach as part of the performance.

The scene Sam recounts of the synagogue social hall is equally eye-opening. Usually a place of mirth and connection, it becomes overwhelming to Sam (and perhaps Susan as well) after Friday evening services. Sam bursts into tears when Susan shares her diagnosis with a friend from the community in public for the first time. It is hardly a space in which he feels comfortable crying.

Sam also shares openly of the hurt he felt when his beloved rabbi did not respond in the way he had hoped during a moment of particular anguish. Sam isn’t rebuffed, but he isn’t adequately heard either. His sense of urgency and need to confide in his rabbi at that very moment is one best understood by those giving care and too often missed by clergy, myself included. Sam was bracing himself for the loss he sees as all but inevitable. It can be difficult for others, including clergy, to discern that struggle and separate it from other emotions that caregivers might be feeling and the highs and lows that can sometimes coexist in a single day for them.

Even as Susan remained determined and even reasonably hopeful, Sam kept seeing a dance assemble before him – the dance of death. A dance of which he is now a part. A dance that he crystallizes in his play.

Instrumentalists join him and his wife on the stage of his mind’s eye. The song starts. Sam begins to dance with Susan. The end of Susan’s life feels all too near.

But to Sam’s astonishment, having all but foreseen the worst, the dance ultimately stops – not to be continued for the foreseeable future. Susan’s treatments are successful. Their love story can continue in absence of anticipatory fear of imminent loss.

Was it all in his mind? Would that make it any less real to him?

To me, as a friend of Sam’s, I felt shaken to see some of what he experienced as a loving caregiver. How little I knew and understood at the time. To me as a rabbi, I felt shaken by the recognition that so many others could well have had (or be having) similar experiences.

To audience members, including members of the theater community and clergy, what seemed most striking was just how much the performance gave them permission to share their own fears – of inadequacy in caring for others, of loss and bereavement, of confusion, of the enduring sense of being in limbo.

The Actual Dance is about death, but Sam’s actual dance is about the delicate steps and emotional paces of caregivers, giving themselves wholly over to the support of a loved one. It is a dance to which all religious communities should become more attuned.