A story crossed my desk several years ago about a nine year old boy in Memphis TN who lived in his house for over a month with his dead mother. She had died of cancer and the child, not knowing what to do, covered her up, went to school, shopped for food, cooked his meals and slept near her as long as he could. There was no extended family. The boy knew enough to know that the state would put him in foster care. So he made his own choice for as long as it lasted until finally the school figured out what was going on and social services stepped in. There was a time when the African American community would have known about this and would have been there to help. (From Barbara Holmes’ Race and The Cosmos)
The stark fact of the matter is even without the force of poverty weighing so heavily on people, many of us are forced to make difficult choices at the end of life. Even had this boy’s mother had a family and a community to help decide on his future care, they might not have had the financial resources to do much of anything. Our moral choices are rarely between good and evil, but between two evils; in this case, placing the boy in a foster system wherein he will struggle his entire life, or with some distant family member that may not want him.
It’s no less agonizing for those who have to make decisions regarding children with special needs. It’s tempting, for those of us not facing the choice of giving a child ritalin or placing him in an institution, to condemn the parents. But we don’t know what it’s like to live with a child whom we can’t take care of because they are too violent. Sometimes the best choice is to let other people or drugs help us survive. It’s no less true for those of us near the end of life or helping those near the end of life. When is the right time to place a loved one in skilled care? How can we afford it? Is there an alternative to institutionalizing them, and do we have the strength to manage that as a family?
To live with the difficult but nonetheless loving choices we are forced to make. One of the most tragic results of the Nazi holocaust was the guilt that survivors of the death camps lived through afterwards. Even in the early post war years in the newly formed State of Israel, there was a general disdain by other Jews who had not lived through the horror. “Why didn’t you do more to stop the Nazis? Why didn’t you resist?” They called the survivors “soap,” a horrific insult to the victims of a culture they had no power to stop.
Theologically, this is known as theodicy, the blaming of God or the victims themselves for the horrors we have to face. I wish they would just blame God or the Nazis. But they didn’t. The first point about how to make these hard loving choices is to survive. We here are not facing the same horrific choices, but survival is the primary value, survival of you as the caregiver. I have watched entirely too many parents of special needs children and children of special needs elders throw themselves on the pyre of obligation and end up in need of drastic care themselves.
Just as I mentioned several weeks ago, the first part of loving is caring for you as the lover. Put your own oxygen mask on before assisting others. Dr. Sharon Welch in her seminal work “The Feminist Ethic of Risk” tells of African American mothers who hid in the bushes with their children as their husbands were being lynched and while they wanted to run out and try to stop it, they knew they had to stay alive for their children. It’s not unlike that when you are the caregiver. You owe it to the ones you love to care for yourself. It’s a matter of degree of course but there is value in staying alive.
But the ethic of risk extends beyond ourselves as well. Because the fact is that we do have to make choices. We do have to decide to help those we love even if we feel incredibly guilty about it. I believe that God lives in the intersection of our relationships with one another. If we have the best intentions at heart and we are caring for ourselves so that we can continue to care for the ones we love, then the choices are easier. So we face the choice concentrically, surviving first and then helping others to survive and realizing that God lives in the love in between. I have come to believe that love is a lot of work. That real love is like praying with your life; constantly deciding what’s right to do, staying true to your own well-being while trying to enhance the ones who depend on you. It’s the difference between coercion and persuasion. You can rarely coerce someone with love, you have to persuade them that this is the best outcome for all, even when you are racked by the choice you feel you are being forced to make.
I believe that too often we feel we must suffer out of some misguided sense of responsibility. But we will get through by sharing the load, not isolating ourselves to deal with it alone. This is what I take to be the new ethic of risk. This recession has brought the struggle of these loving choices into focus. And we can, indeed we must, respond to these struggles whether personal or collective with the theological conviction that this is survivable and it is possible to find love in the decisions themselves. After all, the fact that we wrestle at all with whether to place someone in skilled care is evidence that love is present. And that is good enough.
Yours Always, Rev. John