A Common Language of Loss

I met with a family our firm is representing in an obstetrical medical malpractice case whose baby was profoundly injured during delivery. Their child is delightful but his limitations are obvious. We hope that he will progress as time goes on but he will have permanent limitations. I told the parents of my loss and we talked for quite a while. We shared the dreams that we had for our children and how those dreams have been dashed. We shared our anger at those responsible and our sense of isolation from others who had not suffered any tragedies to their children. As other parents complain about their children, or rather mundane events, we are bitter and angry and envious. I was ,for a moment, envious of these parents since they still had their child.

I am learning that with all types of loss-death of a child or permanent injury to a child, paralysis, amputations, career-ending injuries , illnesses, disability and so on- there are so many common threads, irrespective of the specifics of the actual loss. There is a common language of loss and a connection between all those who have suffered loss.

Grief and the holidays

I have been asked, or others have commented this week, about how difficult it must be without Casey for the holidays. I actually don't think now that the holidays are as difficult for me as some might imagine . I miss Casey every day and on holidays her absence may be more palpable, but, at those times I am surrounded by family and friends and I think, perhaps, that by collectively shouldering the loss it is lessened somewhat for me.

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.

How is your wife doing?

Today I voted at the polling place I have been going to for more than twenty years. No less than four of the regulars-the poll workers-asked me how Di was doing. They all wanted me to tell her that they think of her often and especially when they see the pink tree. I was glad that they were so concerned for Di. After I left it occurred to me that not a single person asked me how I was doing. As the realization hit me I had a very strong emotional reaction--I started to laugh. It was , I am guessing, easier to ask me about Di than to ask me about myself. Perhaps they were more comfortable with a second hand story of grief than hearing about it first hand from me and not knowing how I would react to their question.

I do remember when Casey was about two and a half years old I took her into the same voting machine and let her flip the levers for the candidates that I wanted .

After the first anniversary

Di and I were talking about how it seems harder now, after the first anniversary of Casey's death, than in the months leading up to it. We were almost propelled and carried along in our grief during the first year by events unfolding around us-the funeral, return to work, Fordham memorial, fall 2009 establishment of scholarships and awards in Casey's name, the Pink Performance, spring 2010 New Jersey traffic safety initiative, West Chester University benefit concert, Casey's birthday in April, accepting Casey's diploma at Fordham and the day of service on July 17 th. I have been down , most days, much of the day for several months now as has Di. We believe it is the present absence of distractions that is making it so difficult. Once one gets down it is so much harder to find the desire or energy to actually do anything and a potentially self-defeating cycle begins. One of the tasks of mourning for completion is the establishment of an enduring, albeit, altered relationship with the deceased. I am still so focused on keeping Casey's memory alive by service and helping others discover the joys of service-this may not be the establishing of a new and altered relationship with Casey as much as it is about what I need to do for me right now but it is what feels right for me. I can see I will have to work a little harder to keep momentum going, new projects to remember Casey and to help others. But I have learned that I do get so much out of helping others and knowing we are making a difference in Casey's memory. One of the scholarship recipients at the University of Colorado , after spending her spring break volunteering ,wrote the following in a letter to us:

I am making a living, breathing difference in the lives of others that I am proud of and want others to take part in.

This keeps me going. I am not such a good anonymous donor.

Parents who carry the loss of a child

Brooke has been training for her first Marathon for about 6 months. After a training run of about 18 miles she saw a plaque on a bench . This is what she wrote to us:

When I finished 18 miles and felt really good, I started to stretch at the bench at the end of the path. I looked up and saw the plaque below on the bench. See the attached picture, but if it doesn't load, it reads, "To all parents who carry the loss of a child within their heats, you are in our prayers. - Love Neil and Karen." This really struck me and reminded me again of the heart of why I am running this marathon. No one expects a child to go before them, and no young person ever expects to loose a friend so early in their lives. I miss Casey so much, and think about her practically every time I run. I think about all the things I know she wanted to do in her life, and who she could have been, and how all that was taken away from her. This plaque was a striking message and a reminder of why I set out to do this marathon in the first place.

I have talked about needing to look for gifts every day as they keep me gong and remind me of all the good in this world. Thanks to Brooke for her many gifts .

Photos of Casey and the NYC Marathon

Di, Brooke and I were looking at photos of Casey. I still cannot do so for very long. There is something about all the life and joy and promise and hope in them-especially someone like Casey, that overwhelms me with a deep sense of sadness and loss. I walked away, outside and sat in the grass in the sun and it was warm on my face and dried my tears. I looked at the sycamore and maple and oaks and their fall colors, heard a flock of geese pass overhead and played with Luna. After a while it was ok. I am so thankful that I am able to get out of those deeply sad moments and can enjoy all the wonderful things this world has to offer. I so much enjoyed having Brooke here-her laughter, smile, tears and hugs. Brooke ran with the group Back on My Feet that has sponsored her for next month's NYC marathon that Brooke is running because of Casey. As Brooke talks of her new job I can't help but think that Casey would also be at a new job, starting her career and having lots of new stories to share. But the enormity of the loss seems somehow less with Brooke here and in our lives. How lucky Casey was to have her as a friend and how lucky Di and I are to also have her as our friend.