Excerpted from Chapter 16 of Nonfinite Loss and Grief: A Psychoeducational Approach, by Elizabeth J. Bruce, Ph.D., & Cynthia L. Schultz, Ph.D.

Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

"Everything would have been perfect if Hilda didn’t have this disability," Jenny repeatedly remarked to the therapist. Jenny, 45 years old, had a 5-year-old daughter with severe physical and intellectual disabilities. Jenny came to therapy because she was finding it increasingly difficult to be seen in public with Hilda. "If only I had had an amniocentesis — if Hilda was not here, then everything would go back to normal," she protested. Jenny’s recollection of her family and childhood was that it had been "perfect." In many ways she expressed utter amazement, then, at a series of unfortunate events that seemed to have accompanied her daughter’s birth: "These things just should not have happened to my family — I still find it hard to believe," she exclaims. "Every time I see a child of Hilda’s age, I can’t help going back to this fact. I find myself now and then wishing Hilda were not here. I don’t really mean that, but...."

Jenny was in limbo, trapped by not being able to make some sense of why her life had turned out this way. How she might have prevented it from happening remained one of her central issues. She was finding it very difficult to believe that bad things happen to good people. Rather than accept that the world is not perfect, Jenny held tenaciously to her beliefs. She would not give up a notion of an "ideal world." Thus, Jenny had not adapted to what "was"; rather, she continued to harbor a belief that she might not have to adapt.

Jenny’s idealization of the world that should have been produced a potent yearning response. She was constantly affected by images that symbolize the world she had lost. Being seen publicly with Hilda overexposed her to the reality of her plight, while also creating considerable threat to her identity. "I am not just a mother of a child with disabilities," she stated. Tracing back to her adolescence, Jenny described a constant need to be a member of "the in-group." Her biography revealed a perhaps too perfect childhood. According to Jenny, only Hilda prevented her perfect world from continuing into her adulthood. She recollected that, when she was a child, she considered the lives of people in wheelchairs as "not worth having."

Ideals internalized into self-identity operate on unconscious and conscious levels. Through a therapeutic technique of directed awareness, ideals are slowly and sensitively exposed; their "ideal" character is acknowledged, critiqued, and their significance slowly "shrunk." Although ideals may not be able to coexist with changed versions of the world, they may be able to be reshaped. Expression of emotions parallels the relinquishing of aspects of these ideals.

What were Jenny’s ideals? Where did they come from? Were they hers or were they her parents’? Did she choose them? Had she just accepted them naively? How central were they to her sense of an intact identity? Where did they fit into her narrative? Did they represent her childhood or her adult version of the world? Would Jenny be able to withstand the loss of her idealized version of the world?

Perhaps Jenny might give up some of her ideals if she did not perceive that she was forced to do so, and if she felt she could translate them into her changing version of the world. The therapist worked with her to engage in a biography search, which initially sought to establish the role of her ideals: past, present, and future. Jenny’s awareness was directed to tracing and exploring her ideals, the taken-for-granted reality that has become enmeshed with her self-identity. The therapist searched for linking objects, that is, ways in which Jenny may be able to hold on to old versions of the world and of herself but at the same time be able to reality test her world without them. Through these linking objects, Jenny might gradually discover that she was okay without them.

How do children give up the idea of the tooth fairy? Do you remember your own relinquishment of Santa Claus and the tooth fairy? Slowly, over time, the truth may have dawned on you. Sometimes, however, you preferred to return to a belief in them because you wanted to or needed to, for whatever reason. The world was better with them. Similarly, Jenny’s therapy called for a slow, systematic balancing of her perception of the world, with constant checks on her psychological need to hold on to her childhood version of the world. Over time, she and the therapist slowly worked together to increasingly differentiate between her childhood and adulthood versions of reality. Her beliefs were slowly challenged and exposed as ideals. Direct challenges by the therapist to her highly cherished ideals led her to almost belligerently hold on to them. Gentle and subtle challenges, however, although tedious, helped her loosen the hold.

For Jenny to cease perceiving Hilda as a personal threat, she had to learn to consider imperfection as universal. That is, having a child with a disability was less about Hilda than it was about the nature of life. Discussion between Jenny and her therapist centered around the randomness of misfortune in the world; no one is being punished. In fact, over a lifetime, most people end up with something happening to them. Jenny was asked to direct her attention to the many examples of ordinary and unfair versions of the world.

Yearning for the world that should have been, Jenny learned that she had idealized images of normality and what being just like other people offered. She feared that her friends would reject her for not being like them. As far as Jenny was concerned, all her friends were thinking that she "wished she was like them." The latter theme was recurrent in her life. Jenny’s membership in the "in-group" had always been precarious. Through therapy, she became aware that Hilda had not caused this membership to fracture. The issue was about her own identity problems. She, herself, "needed" to be accepted. The therapeutic focus returned to her adolescence and the similarities with her current stage of life. Jenny was embarrassed by Hilda; Hilda damaged her identity: "I’m a successful dentist. People don’t see this when I’m with Hilda." In fact, the fear of being rejected was Jenny’s dreaded event; it began way back in her development.

In not wanting her friends to think that she wished she was like them, Jenny had not exposed her pain to her friends. Instead, she had pretended that she was not upset about Hilda, that there was no loss. In a sense, Jenny only introduced part of herself to her friends. By cutting off the part of herself that was feeling pain, she continually kept her grief inside. With this superficial level of interaction, she imagined her friends to have the life she did not. The therapist works with the client to challenge this perception. Jenny was encouraged to introduce the hidden part of her life to her friends and test whether they would accept her for herself, something that she had not been psychologically strong enough to do in adolescence.

The therapist alerted Jenny to her habitual way of thinking: Each time she saw an image of the world that should have been she was immediately drawn into a ruminating cycle. She was taught to become a critical observer and note imperfections in others and the world. She was encouraged to start mastering the images and their effect on her. Jenny began observing and listing the number of triggers to which she was responding. Each time she started ruminating on what should have been, she was to challenge herself to only think about it for 2 minutes. Thus, Jenny became her own personal trainer.

The work of grappling with Jenny’s long-held view of the world and exposing its naiveté involved helping her learn to grieve. To encourage her to express her loss, the therapist gave Jenny the task to memorialize and ritualize the letting go of her childhood version of the world. To deal with the cyclic nature of her grief, she was taught what will become lifelong techniques. First, the dynamics of grieving for her unmet expectations were explained. The therapist emphasized that the frustration of not meeting expectations — both conscious and unconscious — is an integral part of chronic conditions. Buildup of frustration is to be expected whenever the world that should have been becomes too potent. The tendency to slip into states of yearning, protest, defiance, or despair is typical (see Figure 13.1). Second, therapy involved training Jenny to monitor her levels of frustration. She was encouraged to read her psychological state and to recognize what she needed to help ventilate her cyclic grief: In her case, talking or writing reduced its potency.

Considerations for Therapy

Sometimes it is possible to thread a version of one’s ideals into the future. If it captures the individual’s passion it begins a link between the world that should have been and the world that is emerging. Therapists usually have a great deal of creativity. In Jenny’s case, her perfect childhood was an ideal that Jenny felt was shattered by and lost to Hilda. This loss had caused Jenny to denigrate and devalue most aspects of Hilda’s childhood. Jenny was challenged to regard her public outings with Hilda as an opportunity to create the best version of childhood possible for Hilda and to use these outings to begin exercising her role as an adult. The first day that she went out in public with Hilda in her wheelchair, she was encouraged to see it as a measure of her healing — that she was going to be "all right" as Hilda’s parent.

Sometime near the end of Jenny’s therapy there was a clear sign that her traumatic condition was abating, that she actually was emerging into a more adult view of herself and the world. The shift can clearly be identified when the client realizes that things are different now. For instance, the parents of a child like Hilda might begin to broaden their perception of the child apart from the disability and reflect that their own emotional state is not the central issue. The way is now open for a more balanced relationship between parent and child.