Mourning and Mesothelioma

In my article, How is Mourning Possible?, I discussed some of what we understand about the process of bereavement. I described it as a necessary and normal process, one in which the pain of loss diminishes over time and in which the process serves to keep the pain alive for an extended period of time. There are situations, however, in which the grief may seem insufferable and in which the circumstances of the loss make it nearly impossible to grieve in the normal way. Death from Mesothelioma is one of those situations.

Richard Moyle, the National Awareness Coordinator for the Mesothelioma Cancer Center recently wrote to me to share some of what he has observed among the patients and survivors his organization is seeking to help. This particular cancer is not the only disease that kills in a seemingly cruel way, and it is not the only type of death that seems unfair, unexpected and undeserved. But I agreed to comment on the mourning process in these cases because it is an experience that seems to exemplify some of the peculiar circumstances that can make mouring more difficult, if not relatively impossible.

Mesothelioma is a rare type of cancer, and the only known cause is exposure to asbestos. It is now well known that this naturally occuring mineral is a carcinogen. This was not so well known during most of the 20th century when it was routinely used in military and indusrial applications. Valued for its durability and resistance to fire, asbestos was used for insulation, flooring, piping, in brake linings and in other ways. While the general public, and many working in the asbestos industry did not know about the dangers, there were many manufacturers of asbestos products who turned a blind eye to the risks in order to gain a profit. The majority of diagnosed cases of mesothelomia can be traced back to occupational asbestos exposure. Many of those who were exposed did not know they were at risk and were not told how to protect themselves.

The symptoms of mesothelioma typically emerge 25 or even 50 years after the exposure to asbestos. When the symptoms emerge and the diagnosis is established, it is generally too late for any effective treatment. The symptoms show up when the cancer is already in an advanced stage and the average life expectancy after diagnosis is only about a year. In other words, by the time it is detected, death is almost certain and certain to come in a short period of time.

In the normal course of events, we expect that we might lose a loved one in a natural and inevitable fashion. A person gets old, becomes infirm, and slips peacefully into the twilight. That is how it is supposed to be. In Greek mythology, it was said that the Fates would measure the span of your life when you were born, and it was assumed that their string stretched out to a full span.

Grieving is a naturally painful process. It is even more painful when a life is cut short, and cut short without rhyme or reason.

Think of the young soldiers who die in defense of our country. Whether they are 19 or 54, we all grieve the loss and mourn the fact that they were taken away in an instant. Think then about the young adult whose life is cut short in an auto accident or a random act of violence. We see the same sudden finality, but we are left without the sense that they died for a cause and with purpose and nobility.

One of the factors that can make a loss ultimately more tolerable is the belief that it had meaning. Senseless death makes no sense, and the inability to understand it makes grieving more difficult and the loss harder to accept. The survivors are left not just with the need to unbind the psychic energy that was attached to the deceased, but also with the question of "why?"

Sometimes the "why" question is answered or resolved by the circumstances of the death. The person was drinking and driving, or being foolish or reckless in some other way. It is because of the need to answer the "why" question that we are often quick (when hearing about the death of someone unknown to us) to attribute responsibility to them personally. We tell ourselves that they were somehow at fault to ease our fears that a similar fate might await us or our loved ones: "Yes, it's tragic, but if they hadn't been ..."

Mesothelioma deaths encapsulate a number of factors that complicate the mourning process. It is a manner of death that is relatively sudden and unexpected. During the months that remain after the diagnosis is made, those who will be left behind must endure the feeling of powerlessness, their inability to stop it or prevent it. Rather than being able to view it as a matter of time and fate, there is the awareness that it was preventable. And rather than being able to rationalize the loss by attributing responsibility to the victim ("he should have stopped smoking and drinking"), they see only that it was someone else who made the decision to expose the victim to the carcinogen. It wasn't an accident, a twist of fate, and it was not for some noble purpose. Too often, what they see is that their loss came only because someone else chose to put profit before human decency. And with these feelings in mind, they are forced to watch a loved one endure a tortured and painful passing.

Again, asbestos related cancers are not the only types of deaths in which these experiences are shared. There are many other, similar circumstances. Some of those other experiences of loss also share with cases of mesothelioma the fact that there might be a protracted set of legal entanglements to resolve over a long period of time. When the victim is laid to rest, the family must decide whether to sue and seek redress. If they do, they are taking on another battle that will seem endless and prove frustrating. Rather than attending to the task of mourning - the task of letting go and moving on - they are stuck in a process that is consuming and that keeps the anger alive. When they should be seeking peace or finding a way to forgive, they are trapped by the need to "right the wrong" or to achieve justice. The same dynamic is seen among those who lose loved ones to acts of criminal violence. The need to achieve justice prevents them from attending to their own more pressing emotional needs.

This struggle to obtain redress is not necessarily unhealthy, and in fact, it may be absolutely essential. Anger is one of the feelings that naturally accompanies almost every unnatural death. Legal action almost always takes a significant psychological toll, but as painful and protracted as it may be, it is sometimes the only choice one has for the purpose of putting the anger to rest and getting on with the ordinarily difficult tasks of mourning.

There is one additional aspect of asbestos related deaths that is shared in common with other unnatural ways of passing and that bears mention. When death occurs in this way, there is actually an opportunity to find purpose in the loss, to find purpose where none might seem apparent. We see this all the time: survivors take on the task of raising awareness about a threat that exists. They crusade and campaign to tell their stories to others, to provide warnings, to prevent similar experiences and to provide support to those who suffer from similar tragedies. Along with the ordinary task of grieving and mourning, individuals and groups create meaning for themselves and their loved ones by making their loss a cause. This is healthy, and it is the message that the National Awareness Coordinator for the Mesothelioma Cancer Center asked me to share.

For more on this topic,  see my article about grief in unusual or traumatic circumstances:  Mourning and Mesothelioma  

Copyright, Paul G. Mattiuzzi, Ph.D.