As revealed in The Actual Dance, one of my fatal flaws (yes, we can have many such flaws) is the need to be in control, make the decision, and move things forward. One of the lessons of my journey with Susan during her breast cancer is that “I am not in control.” Indeed, I learned in that process as the love partner, the husband, that my job was “not to be the director.” My job was “to be the supporter.” Not easy for men generally and never easy for the one whose task in such a situation is to anticipate the loss of the person most dear to them. For those of us whose core style – fatal flaw -- is to be the “leader” and the “decision maker,” the task can be even harder.
This issue came up during one of the dialogues that always follows a performance of The Actual Dance. "Why didn’t you take charge and make changes in the medical team and bring to bear new and different resources?" The temptation to do so is enormous. The internet was not very robust in 2000, the year of our story, and yet I looked on the Internet for insight on what else we could or should be doing. And yes, I talked to other people about their choices.
Our story ended well, Susan survived, though the road was rocky (to say the least). I am confronted with the haunting question of what if things didn’t turn out well and I did not do everything I could to “fix everything?” What if Susan had died?
Luckily I don’t have to face that question. There is a different and more complicated question. What if I did “take charge” and Susan survived and our relationship was destroyed in the process?
This is a real dilemma. The lawyer in me makes the argument for both sides of the question. A bad decision on treatment can result in her death. Is it not the height of narcissism to put one’s marriage above the survival of your spouse? In particular, the argument goes, the relationship can be repaired, death can’t. And even if the tension results in an end to the marriage, life itself is a higher value. The moral and ethical obligation – true love – is to do everything possible to get the best outcome for the person your love.
There is the opposite side of that coin. There is no way to know the impact of specific medical choices. Is it not the ultimate arrogance for me to believe that I can know better than Susan, the one with the cancer, what is best for her? Who am I to tell someone what to do with their body, what medicines to take, how they feel? I am not in their shoes. Is not the ultimate act of love to maintain the dignity of the person you love at the point in time when they are the most vulnerable?
It is very, very hard in “real time” – that is as something is happening --to know what the best thing is to do. I am blessed with having Susan alive and healthy and robust beyond all expectations to now be able to go back and reexamine that question with the benefit of hindsight. My answer is in the show.
“Despite my desperate urge to find someone, anyone, to fix everything now, I know it is not my decision. I don’t get to choose (the course of treatment). My job is not to be the director. My job is to be the supporter. I am the other half of that which makes Susan and me complete. When else in our lives is it more important to be whole than when our body is badly broken.”
It is one of the hardest things I have ever done in my life; but I believe it was the right decision. To be there for what she needed when she needed it. I did not want to add one iota of stress to the moment. Despite the fact that Susan could tell – all those times I cried and she comforted me – that I was hurting, neither of us had to deal with a conflict over the choice of doctors or treatment options. Yes we would talk about it, and no we did not fight about it. We did not get angry with each other. If it was what she wanted I stopped when it was clear that she had made the choice, even if I did not agree with the decision.
We loved each other through the process by allowing each of us our authentic role and as a result our love has become even greater.
This issue came up during one of the dialogues that always follows a performance of The Actual Dance. "Why didn’t you take charge and make changes in the medical team and bring to bear new and different resources?" The temptation to do so is enormous. The internet was not very robust in 2000, the year of our story, and yet I looked on the Internet for insight on what else we could or should be doing. And yes, I talked to other people about their choices.
Our story ended well, Susan survived, though the road was rocky (to say the least). I am confronted with the haunting question of what if things didn’t turn out well and I did not do everything I could to “fix everything?” What if Susan had died?
Luckily I don’t have to face that question. There is a different and more complicated question. What if I did “take charge” and Susan survived and our relationship was destroyed in the process?
This is a real dilemma. The lawyer in me makes the argument for both sides of the question. A bad decision on treatment can result in her death. Is it not the height of narcissism to put one’s marriage above the survival of your spouse? In particular, the argument goes, the relationship can be repaired, death can’t. And even if the tension results in an end to the marriage, life itself is a higher value. The moral and ethical obligation – true love – is to do everything possible to get the best outcome for the person your love.
There is the opposite side of that coin. There is no way to know the impact of specific medical choices. Is it not the ultimate arrogance for me to believe that I can know better than Susan, the one with the cancer, what is best for her? Who am I to tell someone what to do with their body, what medicines to take, how they feel? I am not in their shoes. Is not the ultimate act of love to maintain the dignity of the person you love at the point in time when they are the most vulnerable?
It is very, very hard in “real time” – that is as something is happening --to know what the best thing is to do. I am blessed with having Susan alive and healthy and robust beyond all expectations to now be able to go back and reexamine that question with the benefit of hindsight. My answer is in the show.
“Despite my desperate urge to find someone, anyone, to fix everything now, I know it is not my decision. I don’t get to choose (the course of treatment). My job is not to be the director. My job is to be the supporter. I am the other half of that which makes Susan and me complete. When else in our lives is it more important to be whole than when our body is badly broken.”
It is one of the hardest things I have ever done in my life; but I believe it was the right decision. To be there for what she needed when she needed it. I did not want to add one iota of stress to the moment. Despite the fact that Susan could tell – all those times I cried and she comforted me – that I was hurting, neither of us had to deal with a conflict over the choice of doctors or treatment options. Yes we would talk about it, and no we did not fight about it. We did not get angry with each other. If it was what she wanted I stopped when it was clear that she had made the choice, even if I did not agree with the decision.
We loved each other through the process by allowing each of us our authentic role and as a result our love has become even greater.
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