A Need to Talk About Casey

Reprinted from 2010 (prior version accidentally deleted):

We continue to meet new people who have learned of our loss. We continue to meet parents who have also lost children. It is so clear to me that we need to talk about our children - we need to give their life meaning in whatever ways possible - we do not want our children who lived such very short lives to be forgotten. As I have said before, society does not make it easy sometimes for us to feel comfortable talking about our loss. Some of us have been fortunate to have those surrounding us who try to understand while many of us have not been so fortunate. Talking about our children is another way of keeping them alive. Many of us have also set up scholarships in our childrens' names and have tried to do something positive and lasting in their memory. We do this for them but very much also for us. What do we need to recover? What is recovery from this most awful experience? Someone recently talked to me about the difference between acceptance and peace. I have some measure of acceptance but little if anything in the nature of peace.

A dialogue of loss

I was asked to write about loss for a local charity that supports those who have received burn injuries. I agreed and then had second thoughts. My experience of loss is unique. It is even different from the experience of other fathers who have lost daughters. Could I really address the concerns of those who had received terrible burn injuries and survived in a respectful and helpful manner? So I thought about whether there were some aspects of loss, whether it is a death or life-altering injury, that were universal irrespective of the specific type of loss. Then it occurred that the focus could be on how all of us survivors receive support from others and what we can do to help the process. Here is an excerpt:

One of the variables that has been identified in studies of loss as predictive of the path personal suffering may take is our perception of the support we receive from others. If we believe that those around us are interested and care about us we are likely to do better. Mental health professionals speak of “being present” or empathic listening. This is the ability to listen to someone intently and convey through the process that you understand not only their words, but how they feel and what is like to be them and that you deeply care. Unfortunately many are not able to listen in a caring fashion when we need to speak about our loss. So what we need from others to help us is often difficult or impossible for them to provide. One of my clients, a twenty-one year old man who is paralyzed from the waist down, told me that he would welcome someone asking him what it was like to be sitting in a wheelchair. He could see their faces, their eyes looking down at him as he sat in the wheelchair and knew they were thinking about how awful his injury was, but they would not talk about it. What was now part of his life, his new story, was being ignored. Ignoring what had happened was the same as ignoring him. He desperately wanted people to listen to him, and to know that they cared and accepted him as he was. After my loss I have experienced the awkwardness and discomfort of others when confronted with a parent’s grief. I have learned over the past year that if I wanted to tell my story and have someone listen I would often have to lead the way , almost giving “permission” to the other to have a dialogue about what had happened. This is supported by preliminary results from an ongoing study concerning loss which indicates that nearly all of those surveyed desperately wanted feedback from the survivor about how to be supportive.

In this way I have made it easier for others to be supportive and give me what I often need-a caring person who will listen. It is also a way to take some control over my situation and responsibility for what I need as a survivor. This does not always work, but when it does, and my story has been heard I feel connected and less isolated.

Optomism, Coping Skills and Social Support

The research on parental grief is voluminous. Most of the articles contain a statement to the effect that the loss of a child is the worst loss any person can suffer. Other research tries to predict based on a number of variables how a parent will progress over time. Some of the research points to tree variables as rough predictors of future recovery/adjustment:

1. Optimism for life
2. Coping skills
3. Perceived social support

The first two are set by the time the loss occurs-not that we do not learn how to cope after our child's death but the skills that existed at the time of the loss are the focus. So if we have been beat up a little in life and had to overcome some difficulties and in the process learned some coping skills we may be better prepared for this most difficult of obstacles. But perceived social support is the variable that is not fixed at the time of our child's death. Does it appear to us that our circle of friends, family, co-workers and neighbors are supportive? If so , the studies suggest we will do better. With the awkwardness and confusion and ignorance concerning death where are we supposed to get this social support? There are some who actually can be helpful-knowing when to listen, how to be supportive, allowing us to proceed at our own pace and sticking with us , but unfortunately they are the rarity. It is not their fault-I was like them before this happened in many respects also when it came to death, particularly a tragic death. If social support is a predictor of a better outcome for those who are grieving what can we do to educate those around us to do a better job?