Loss is no farther away than the front page of our daily newspaper or our television screens. We are subjected to endless stories about vicious homicides, continual wars, terrifying accidents, increasing homelessness, poverty and the emotional emptiness that accompanies such deprivation. We live in violent times; a recession heightens that violence. It is no surprise then that often we dull our senses or avoid these stories altogether so as not to be overwhelmed.

On a more intimate level, we also regularly confront personal losses; an argument between friends; the pain of having a loved one move away from us; or the vicissitudes that come from growing older. We may dismiss them as of minor consequence or "just a passing phase in life." Others may even dismiss them as trivial. They still hurt and cause emotional pain. Other losses are huge and traumatic: the loss of a job; a divorce; personal illness; being transferred to a new region of the country to live, and indeed, death. Feelings of confusion, anger, helplessness, depression, and sadness are often accompanied by fatigue, stress and irritability. This is natural and to be expected. It’s as if life has stopped still and we wonder if we will ever more forward again. We act irrationally (as if grief ought to be logical); our tempers are increasingly short fused, and even laughter produces feelings of guilt. To enjoy ourselves doesn’t feel okay, though we know intellectually laughter and fun are healing and therapeutic. We isolate ourselves and yet hate that very same isolation and crave personal contact with others. It is a time of huge contradictions, what I call the paradox of pain.

What is crucial is how we deal with these feelings of loss. We can avoid our emotions, treating them as if they don’t exist. We can tell people, even ourselves, that we are "just fine." But as the advertisement jingle goes, you can "pay me now, or pay me later." Stuffed away feelings always catch up with us. People burst forth in waves of emotion, often through tears or fits of rage. Some of us become "human battering rams," taking out our anger and aggression on anyone who gets in the way, including care providers, physicians, educators, even family and close relatives, the very people who can best support us in our struggles.

There are significant differences between men and women in this area, certainly worthy of exploration. Most women view relationships as a primary value. They openly talk about their children, their fears, joys, worries and concerns. This can be disarming for men, who often would rather talk about the external parts of their lives: work, politics, sports, and yes, family, when the family stories are successful and worth sharing. Most men are problem-solvers, and they like to compete and take charge. As the famed coach, Vince Lombardi, once said, "Winning isn’t everything; it’s the only thing." There is certainly nothing wrong with these roles and attitudes, but often they don’t allow much room for feelings, particularly "negative" feelings. Men are often admired for "keeping a stiff upper lip," for being strong in the face of overwhelming odds. We are told, "You handle things so well; I admire you for that." In that comment is a double edged sword: "I appreciate your ability to keep moving forward, to perform under pressure," but also clear is the message, "Don’t show me your vulnerable side, I am not sure I want to hear it or can handle it." Men, in particular, often have difficulty sharing emotions, sometimes even identifying them. Some will comment it is easier to share feelings with women; "They just understand better." However, if this woman is his wife or significant other, he might not want to "burden" her with his feelings; he believes to do so would be more than she can handle. Such projections are really myths; they are demeaning, and imply weakness and inability to handle the truth. By not being honest with each other, we create unequal relationships, thereby limiting interpersonal communication and adding additional stresses to our lives.

Some men choose to isolate themselves from others. While isolation might seem helpful, such avoidance is rarely helpful at all (exceptions would be moments of reflection and a place to collect ones wits). Isolation contributes to our feelings of being misunderstood, not heard and uncared for -- victims -- and at times, martyrs. The farther we run away the stronger the feelings become. We become trapped and might indulge in such behaviors as working too long and too hard, drinking too much or having extramarital affairs.

I have often asked myself, why is it so difficult for men to let others into their private worlds? A complex question, one simple response is, it just isn’t macho to do so. Have you ever been angry at the way men are typically portrayed by the media? They come off as insensitive, boorish, incompetent, sex crazed boobs -- louts and jerks! Yet even such stereotypes carry some truths in them. The media portrays people based on what images sell, and these images of men do indeed sell because that is how we often portray ourselves, though we might not use such unflattering terms. Having a child with special needs can make such stereotypes utterly meaningless. We are asked to experience feelings and situations that in our wildest dreams we thought we would never confront, but we do and we must!

Parents with special needs children experience losses everyday. The child has not died, so one cannot "start" the grief process and ultimately move on with one’s life and return to normalcy, whatever that is. Literature on disabilities often refers to parents of children with special needs experiencing "chronic episodes of sorrow." Ken Moses, noted psychologist and teacher regarding crisis, trauma and loss, in an article entitled, "The Impact of Childhood Disability: The Parents’ Struggle," talks about the familiar stages of grief: denial, anxiety, fear, guilt, depression, and anger. Unlike the thinking of Elisabeth Kübler Ross and others, he does not accept the stage of acceptance; it "is totally unfounded." In his twenty plus years working with families, "I have never seen anyone achieve acceptance of loss, only acknowledgment." Nor does he say that grieving is ever orderly. "A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they are supposed to grieve in a certain way, they often end up thinking they are doing it wrong." Rather, he says the above feelings are recurring and constant, though each time they occur they are generally increasingly manageable. 2

So, as men, and as members of families also coping with daily losses, what options do we have? Margarita Suarez, nationally known counselor, nurse and educator, talks about slowing down, paying attention to what is bothering us, discovering the issues behind the feelings. So many of us would rather speed up our lives so as to leave little room for such discoveries. Let’s be honest: these discoveries can be scary and overwhelming at times, and perhaps even worse, unbecoming to our self-image. Though we are told "Image is everything," we really know that image is often hollow and misleading. Truth is a harder animal to accept, yet ironically truth is where the understanding, the growth and healing reside. We need to learn about what our families have taught us about grieving. Some of the learned messages are not very helpful. Spending time listening to our own parents tell about their losses in growing up will oftentimes shed light on previously dark, even secretive areas. Men need time to talk and listen to their own fathers, to complete unfinished business in the most loving manner possible.

Ms. Suarez also talks about the "freedom" that comes from understanding our personal filters, the "camera" of how we view the world. Absolutely no one has the same lens. These filters are made up of 1) values and beliefs, 2) personal priorities, and 3) life experiences. Loss and crisis can cause our filters to get stuck in place; personal rigidity is the result. I have often been asked, does having a child with a chronic illness or disability cause divorce? I doubt it! What does happen is that previously vulnerable places in a couple’s relationship become magnified and illuminated. When our filters become rigid and frozen in place, these hidden issues come to the forefront. Unless communication channels are maintained and the couple continues to talk, listen, and respect each other’s differences, the relationship is at risk, certainly for heightened pain, and yes, sometimes even dissolution. The goal is to "respect each other’s camera" We all manage losses in uniquely personal ways. We need to let go of being right, and accept that our answers don’t necessarily work for anyone else. We can only "fix" ourselves.

So often we spend time on the why of events. There is a mystery to our lives and the events that occur in them. We need to accept the idea that we won’t know many of the answers. The American poet, Edwin Arlington Robinson, wrote that "there is nothing more futile than regret." Yet we put ourselves through endless battles of guilt and rage, blaming ourselves, others, even God, for why our child is disabled or sick. Know that it is okay to question and to ask why and what if. Also know the answers will not be easy to find nor always clear. To finally let go of the why is to acknowledge one’s life and find out anew what it has to teach us.

Some final thoughts on the healing process. Again, Ms. Suarez speaks with extraordinary insight:

- Acknowledge the fact that great changes are occurring in our lives.

- It is crucial we work with our guilt, "the way to keep alive the myth that we have control over others," over life and its outcomes. We cannot fix our children nor manage how our partners respond to losses and pain. We need to learn how to forgive ourselves and accept our humanness.

- We must learn and re-learn the power of love; to be loved and to give love in return.

- Anger is to be expected as it evolves out of a lack of control, personal guilt and a feeling of incompetence. Anger brings energy. Men know this very, very well. Ms. Suarez remarks she would "rather have people angry than depressed." However, prolonged anger will also "eat us up." Anger is usually secondary to other feelings (disappointment, frustration). To deal with anger, find out what really is provoking it.

- Know that in grieving all feelings are okay. Too often, particularly men, deny certain feelings as bad (sadness, depression, loneliness). All feelings teach us important lessons, if we choose to listen.

- We cannot take away another person’s pain, "but together we can walk with them," We can find out what a person wants, what is helpful, not helpful to them, and attempt to provide it. This says "you are important and we care for you."

- Let all family members share their feelings. Non-disabled siblings have a right to their anger, jealousy and frustrations. "It is a gift to give permission to our non-disabled children to pass their disabled siblings, to be their own persons."

- Seek counseling if need be. Despite what many of us have been taught, asking for help is a strength, not a weakness. Having a skilled, "neutral" person assist us in opening channels of communication and closing wounds is a gift to ourselves.

- Be gentle with ourselves; take respite breaks, get away and spend time with each other as a couple. Make love, laugh, cry, and enjoy each other once again. The problems will always be there when we return and a few days off really won’t make much difference. Enjoying each other will!

Ken Moses stresses the power of sharing. To be with supportive people, who know firsthand what we are experiencing, and are non-judgmental in their relating to us, "helps parents grow and benefit from what might be the worst tragedy of their lives." From that sharing comes a new world view, new values, new strength and self-understanding:

Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency, to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur.

An acquaintance of mine, a wonderful man, died this past summer. Just 47, and in the very prime of his life, he was the beneficiary of a remarkable outpouring of love and wisdom at his funeral. In an emotional eulogy to her husband, his wife remarked that she was grateful for the times they spent together. She went on to say that the only guarantee is the present, so daily we must choose to live our lives to the fullest. We must be clear in our values and put our personal energies where they truly count. Finally, she said we must never forget to let people know how much we cherish and value them. Personal affirmations must be voiced everyday, in word and action. And then she asked the crowd to stand and give her husband a standing ovation for a life well lived.

May we all find meaning, strength and understanding in our losses.

References:

1 Suarez, Margarita. Lecture at the Merrywood School Fathers Network, Bellevue, Washington, January 18, 1992. Thanks to Ms. Suarez for allowing the ideas used in this article to be published.

2 Moses, Ken. "The Impact of Childhood Disability: The Parent’s Struggle," Ways Magazine, Spring, 1987.

This article was originally published in the National Fathers Network Newsletter, Volume 2:2, Winter, 1992.

© 1992 - all rights to this text belong to James May, jmay@seanet.com