Navigating the Emotional Impact of Diagnosis
By Karen Martin, M.A., and Kathryn Ritter, Ph.D., LSLS Cert. AVT
When parents first discover their child has a hearing loss, they will likely experience a wide range of emotions. The vast majority of parents who have children with hearing loss have typical hearing themselves (Gallaudet Research Institute, 2008). Grief is a typical response to a loss or change in a significant person, dream, ideal, skill or object (Luterman, 1999), and a diagnosis of hearing loss may trigger deep and complex emotions in parents. This emotional impact is described as a cyclical process that spans many years. Parents might be coping well, doing what is necessary to support their child and family, and then suddenly feel overwhelmed by emotion when an event reminds them of their child’s difference and struggle. Models of grief that suggest “all will be well” once parents reach the “acceptance” phase do not represent the experience of parents who describe their emotional response as cyclical. Some parents report that members of their family, community and the medical profession tell them they should stop grieving and “just get over it.” In a culture where prolonged grieving is often viewed as unhealthy, parents may feel stigmatized by their ongoing emotions. With these challenges in mind we would like to introduce a new model for working through the many emotions parents may face when they learn their child has a hearing loss.
Reacting to critiques of stage-based and time-limited models of grief, Karen Martin, Ph.D. (a sociologist), and the late Sandra Elder, Ph.D. (a psychologist), believed a more intuitive and less restrictive model was needed. They developed the Pathways through Grief model (Figure) by collecting and analyzing spoken and written accounts of people who were grieving losses resulting from accidents, illness, divorce and deaths of loved ones, among others (see Martin & Elder, 1993, 1996a, 1996b). Common features of these accounts provided the direction and content for this model. The model also mirrors comments made by author C. S. Lewis, who struggled to understand and cope with grief after his wife died. As he notes in his book, A Grief Observed, “In grief nothing stays put. One keeps emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope that I am on a spiral?” (p. 67). He found grief to be “like a long valley, a winding valley where any bend may reveal a totally new landscape” (p. 69). Constructed with the narrative accounts of those grieving and the image described by Lewis, the Pathways through Grief model provides both a map and a way of understanding and coping with the stressful and often confusing emotional landscape that comes with learning a child has a hearing loss.
Pathways through Grief
The word MEANINGS sits in the center of the model to draw attention to the fact that grief is not experienced until someone or something meaningful to us is lost or changes in important ways. Because family members often differ in their opinion about the significance and meaning of almost everything, it is not unusual for there to be disagreements about the importance of a loss or change, its meaning and what to do about it. Some react to a particular loss or change with intense, overwhelming and painful emotions; others might view that same loss or change as insignificant or a problem that needs to be solved. Suggesting that there is more than one way to grieve, the model offers two intertwining circular pathways, each of which shows a different type of journey. In the end, most people cycle through both pathways, often repeatedly. The cyclic nature of the model reflects the belief that grief does not have a specific beginning or ending point. It simply changes over time and with increased life experience.
Turning to the bottom half of the model, this phase of the journey involves three basic but complex reactions to loss or change: PROTEST, DESPAIR and DETACHMENT. Protest involves the struggle or inability to accept that a loss or change has occurred; it is exemplified by denial, feelings of numbness and futile attempts to go on as if nothing has been lost or changed. However, as the loss or change can no longer be ignored or denied, individuals may begin to experience despair. For many, feeling despair is the most difficult part of working through grief. Nothing makes sense, emotions may seem to run wild and feelings of anger can give way to sadness and guilt. With time these emotional swings may become so exhausting that individuals begin to detach by withdrawing from their own feelings and from those around them. In fact, humans act much like turtles, pulling themselves into their shells. This move gives us time to protect ourselves from further commitments, in part because we may be unable to deal with new changes while working through old loss or changes. This is not a good place to get stuck – and some do. At some point, however, most people are able to rejoin their world; however, their journey through grief is not over.
The top half of the model represents a phase of working through grief that involves three activities: EXPLORE, HOPE and INVEST. Many start exploring their grief over loss or change after dwelling in the bottom half of the model. Others start here. Instead of experiencing and focusing on their emotions, they dedicate themselves to finding out what happened and why, and to searching for solutions so life can return to “normal.” Exploring can involve reading everything that might help explain or resolve their situation. Various professionals and experts might be consulted. Eventually, the need to explore and understand a loss provides some sense of hope. Being hopeful allows individuals to begin incorporating loss or change into their lives, to move beyond it and to try to make a fresh start even if when it may be too soon to do this. Hopeful people try to invest in their lives and their future. Unfortunately, making new plans and commitments creates the possibility of future losses or disappointments. Those who cannot accept this usually do their best to remain aloof and avoid making important commitments. Each time the loss is confronted, it takes on new meanings. Those who cannot see their loss differently over time can get stuck in their process of grief.
Finally, the people-like figures that surround the model’s spiral shape are the CIRCLE OF INFLUENCE. They represent people from both our past and our present; those we know personally and those who represent societal influences that create the rules about the “right” way to feel and act in a variety of situations. In fact, this circle includes anyone in our lives who influence how we think we should grieve and what we think we are expected to do in a given situation. For example, our family upbringing, beliefs and culture can influence whether we express our grief or keep it hidden, even from ourselves. Reactions of current friends, family, employers and various professionals can also strongly influence what we think and do about our losses or changes and our grief. Once we are aware of this, we can begin to grieve in ways that suit our particular situation and that meets our needs instead of the expectations of others.
For parents of children with hearing loss, the pressure of time to act swiftly to support their child’s optimal communication development can complicate the grieving process. This model has been used extensively with parents as well as with students in sociology, education and speech-language pathology. The feedback we receive is that the model is very helpful in terms of understanding the grieving process. Students report that it matches their own experience of life, and often use this model in their future practices. Parents report that the Pathways through Grief model not only helps them process their own emotions, but also helps them better understand and support their family’s processing needs. Parents also report that they found it helpful to know that when one family member is in the bottom part of the model in their process, and another is in the top part, they are often, literally, speaking different languages. This knowledge facilitates better communication and acceptance of one another’s way of grieving. It also encourages grieving parents to treat their own reactions as valid. In applying the Pathways through Grief model to her own experience, one parent concluded, “Now I don't worry about how I am feeling – I just let it happen and go on.”
Gallaudet Research Institute. (2008). Regional and national summary report of data from the 2007–08 annual survey of deaf and hard of hearing children and youth. Washington, DC: Author.
Lewis, C.S. (1976). A grief observed. New York: Bantam Books.
Luterman, D. (1999). The young deaf child. Baltinmore, MD: York Press Inc.
Martin, K. & Elder, S. (1993). Pathways through grief: A model of the process. In J. Morgan (Ed.), Personal care in an impersonal world (pp. 73-86). Amityville, NY: Baywood Publishing Company.
Martin, K. & Elder, S. (1996a). Pathways through grief: A map for life's most painful journey (Part 1). Living our losses, Spring/Summer, 5-7. Edmonton, AB: Otter Press.
Martin, K. & Elder, S. (1996b). Pathways through grief: A map for life's most painful journey (Part 2). Living our losses, Fall/Winter, 5-7. Edmonton, AB: Otter Press.