The show is an autobiographical theatrical version of the journey I took in the year 2000 as Susan went through advanced breast cancer. She is an unlikely survivor though. In that year --- now almost 19 years ago – we didn’t know that she would be a survivor. In fact, there were moments when everyone “went dark” – that is the medical community went dark. I could tell by their looks, their voices and their suggestions that they believed that Susan would not survive.
November is National Family Caregiver Month, a time when the nation gives thanks to those who family members give of themselves in time, money and energy to care for family loved ones.
The Actual Dance has been referred to by my friend Reverend Greg Johnson as “another face of family caregiving.” And of course, and as usual, he is correct. Among the many things that I had to do in 2000 was to learn how to keep Susan safe and supported in the hospital and at home as was undergoing treatment. I learned how to empty the “two small plastic bulbs that hung of either side of chest, filled with a red liquid.” I learned how to give her injections while we were traveling to keep her red blood count at the right levels. I made sure she could get her medicines, and I would cook and do other things that normally she did.
But that is NOT what The Actual Dance is really about. If only it were. No. The Actual Dance is about a different journey – the existential journey of facing the crushing pain of the loss of the person you love most in the world. In the play, and in my case, it was Susan, my wife of then 33 years. The person who I had come to view as my soul mate and that her loss would be the loss of half my own being.
How do you do that? That is what The Actual Dance is about. And it offers some answers, though the answer is unique for each person going through this ritual.
What I have realized is that the word “Caregiver” is a catch-all that is not useful to describe or identify the role of love-partner. There is not, as far as I can tell, a word for role. For the moment I use the word “love-partner,” yet I continue to wonder if there isn’t something better.
The absence of a word also suggests to me that the role itself is not well recognized in our society. I say that knowing that in most hospitals there is a “Chapel.” Indeed, it may be that the medical world looks upon this part of journey as not their responsibility. They experience the “other person” at the table as a caregiver or more coldly the person with the “medical power of attorney.” Perhaps they do so because this is a part of their job that is too hard to deal with. In the name of objectivity or just because they must go on to the next patient that it is necessary to compartmentalize and not confront that unfolding part of the love-partner’s journey.
I have also come to believe that a fuller recognition of the love-partner as the love-partner has something to offer the medical professionals. They too are human and experience the full range of human emotions. Being in the presence of intense emotional trauma itself is its’ own trauma. Medical professionals in my experience fight to keep the “game-face.” Yet they too walk out of the room, turn the corner and cry.
I am looking forward in 2019 to engaging the various organizations and medical venues to explore this conversation. Already my performances at Medical schools such as University of Virginia and Johns Hopkins, and hospitals such as MedStar Washington and Memorial Sloan Kettering have shown me how deeply medical professionals and caregiving professionals themselves are affected by the love-partner’s journey.
So, I think a first step is coming back to the question of finding “a word for that” role in the journey. I think once we can name it, we can begin to address it more deeply and compassionately for everyone involved.