Growth and adaptation

The clinician must keep in mind the context from which the patient is coming. Just days or even hours ago the individual may have been going about daily life without difficulty. The trauma may be multifaceted: (1) physical trauma, (2) emotional trauma occurring to the individual’s support system, and (3) trauma of each of these systems interacting (the support system trying to protect the individual, and the patient trying to protect the support system). The interaction of these multifaceted components of the trauma may lead to posttraumatic stress. Posttraumatic stress can happen anytime after the life-changing or traumatic event. The level of distress can become disabling in and of itself, and our medical system will label the response a “syndrome” if the level of distress becomes paralyzing. The posttraumatic stress “syndrome” may be observed more often in women, but because of cultural barriers it can be hidden in men. It happens more often when there has been a near-death situation. ^, The patient may blame others, try to protect others, or be so self-absorbed that little else in the world may be seen or heard. It may be helpful to get psychological help for the individual early in therapy, even without the label of a “syndrome,” if the level of distress is preventing optimal outcomes or creating obstacles in therapy. ^{, ,} Keeping in mind that even the concepts of “optimal outcomes” and “obstacles in therapy” can dehumanize our patients and can become blocks in our own capacity as clinicians to bring our own humanity to the patient-therapist relationship. These are moral and ethical concerns that skilled clinicians need to remain vigilant of throughout our career working in our culture’s industrialized systems of health care that seek a bottom line that can often be a financial one with fierce productivity standards.

One of the most important jobs the therapist does is to develop a trusting relationship with the patient. Through this relationship the individual can be guided to focus on the goals of therapy and work on a positive perspective about the future. One of the errors of the medical system is that of focusing on the disease outcomes and pathology and not on the person and their capabilities and helping boost the integrity and personal sovereignty of the individual as a whole person. If we focus solely on the loss, we may cause the individual to see only the injury, disease, or condition and nothing else. In a Veterans Administration hospital, spouses of people with spinal cord injuries formed a group in which the group’s focus was on why the partners got married in the first place; the group never looked at the physical limitations as disabling. After a little while, people came to the conclusion that they did not marry their spouses for their legs and the fact that the legs no longer worked was not a major issue after all. This started the decentering from the medical disability model, and the focus started to be placed on the people and the families’ future. If we can help patients focus on their functions and interests and not their dysfunctions, the effect of therapy after treatment will be much better. More work needs to be done to help patients see the potential they will have in the future to live their lives with the highest quality possible. ^, The World Health Organization developed a model that differentiates the disease pathology model of medicine and focuses on individuals’ activities in life and the ability to participate in those interactions. The therapy world has enthusiastically accepted this model, the International Classification of Functioning, Disability, and Health (ICF), and the professions of both occupational and physical therapy use it as a reference model for practice.

Focusing on how to participate, move, and function in the world is one of the keys to helping the patient and the family work toward its future. ^{, ,} The therapist needs to help the patient focus on the direction of treatment objectives and demonstrate how therapy translates into meeting the patient’s goals. ^, To discover the patient’s true goals, the therapist must gain the trust of the patient and establish sound lines of communication. Distrust from health professionals may obstruct the adjustment process and lead to negative consequences. Whenever possible, the patient’s support system should be enlisted to help establish realistic support for the patient and the goals of both the patient and the family. It has been found that if the patient trusts the health professional, the patient will be more adherent and will seek assistance when it is needed. ^,

A new normal

When we experience a decline in our ability to carry out our everyday routine tasks, regardless of the cause of our “disability,” we may experience incredible degrees of despair. Many societies emphasize a very specific idea of what it means to be normal. At least in our modern, North American model, there doesn’t appear to be a great deal of flexibility in what this standard of normal is, regardless of one’s cultural background. When an individual fails to live up to or no longer fits this norm, there can exist a tremendous amount of mental and emotional suffering. Because our bodies and minds are so intricately interconnected, our physical being is adversely affected by the mental and emotional anguish. On top of what the individual may already be experiencing physically, suddenly there is another layer of mental-physical anguish that is far too easily ignored, unappreciated, and unattended to by clinical professionals. However, once we are aware of the multifaceted potential for human suffering with regard to adjusting to a disability, we may be empowered to assist the individual with a nonlinear, multifaceted approach. Researchers and theorists from various psychotherapy traditions have begun to explore the potential value of the therapeutic relationship by making direct references to different levels of validation as a means of demonstrating warmth, genuineness, empathy, and acceptance and reiterate how important it is for therapists to reflect back to the patient that their feelings, thoughts, and actions make sense in the context of their current experience and the cultural norms at large. In addition, the therapist articulates an expectation that the treatment collaboration will be effective in an attempt to convey hope and confidence in their ability to work together.

We can guide our patients in identifying a new normal for themselves, all the while allowing them and their support system to grieve the “loss” of the old normal. As the Harvard psychologist Ellen Langer described in her book Mindfulness , “if we are offered a new use for a door or a new view of old age [or disability], we can erase the old mindsets without difficulty.” We can offer our patients a new view of themselves by showing them what they are capable of as they rebuild their lives. We can also help them honor and acknowledge what is present in this moment for them, we can help reflect back to them what they are capable of, and to appreciate their humanity and their wholeness as they are, without needing them to be any other way.

People who choose to go into this line of work and to be a part of the helping rehabilitation profession tend to be compassionate people. This is of course a wonderful quality to bring to our patients. At the same time, however, we need to be vigilant of the desire we may bring into our work with the underlying goal to take away another person’s suffering. This kind of attitude to our work can bring about burnout and compassion fatigue. If we notice this underlying desire, it is helpful to just notice it as it is, maybe inquire about where we may have picked up this narrative, identify if it is useful to the situation, and letting it go. Let’s consider this a bit more.

A woman who has lived with multiple sclerosis for over 30 years describes how the relief of suffering does not require restoring physical function to some perceived level of normality. Nor is she saying that our job is to relieve suffering. She states, “Suffering is relieved to the extent that patients can learn to integrate bodily disorder and physical incapacity into their lives, to accommodate to a different way of being” (p. 591). It may be that we can bring healing to ourselves, our patients, and our culture to appreciate the potential for a new narrative around our customary approach to suffering, which is implies that in general we want relief from suffering and sometimes at significant costs. Maybe the new narrative we could foster is one where suffering does not need to be “relieved.” We may wonder about who we are as people and health care practitioners, often bringing a narrative of “us” as clinicians, being the ones to take away or “relieve” someone else’s suffering. Is this necessary or even helpful? What if we learned to approach our own suffering, our patient’s suffering, and the suffering of the world with a view that it is to be honored and appreciated as a profoundly meaningful human experience, not to be disregarded or something to “get rid of”? There is potential within our suffering to bring profound meaning to our lives. More recent research is demonstrating that when we wrestle with life’s challenges or when we give ourselves the space to suffer during challenges and changes, these experiences can help us make meaning of our lives. The process of grappling with these difficulties and intensities, while holding ourselves and others with compassion and clarity, can bring new narratives we so desperately need in these times. So let us wonder together about the implications of this. Feelings of sadness, anger, despair, longing, and fear can all be appropriate responses to change. How might we hold space for and honor these human experiences? There are almost no role models for this way of being in the midst of most of our dominant systems of our industrialized existence, including our health care institutions, but we can always learn, and practicing mindfulness can foster this capacity in meaningful ways.

According to research by De Souza and Frank, their subjects with chronic back pain expressed regret at the loss of capabilities and distress at the functional consequences of those losses. They found that facilitating adjustment to “loss” was more helpful than implying the potential for a life free of pain as a result of therapeutic interventions. The word “loss” is in quotations here to recognize that the language we use to imply a certain kind of meaning on someone else’s experience needs to be considered thoughtfully and held in awareness. Language is powerful, and it is important to recognize that it is possible for people to not experience their situation necessarily as a “loss” but consider the experience as a gift or both. Or we could say experiencing that loss comes with a gift.

There is a broad continuum of experience a human being may ascribe to their situation, and we need to be alert to our own biases about a person’s potential experience and honor that and not need to impose our own biases and views upon their experience. How do we know what they may be experiencing? Well, we could ask them, with an open, curious awareness, “How is it for you now? What is this experience like for you?” So often in our modern North American culture we are taught to not show our pain and suffering, to numb and subjugate our experience. Through our own personal practice, integrating a mindful holding and honoring of our own human experiences, the griefs, the sadness, the fears, the joys, and the wonder, we become more capable of holding another’s full human experience and not needing them to be different from what “it” is.

We can sense this capacity in each other. Consider this: you may know people in your life you feel safe sharing your deepest truth and feelings with and others you can sense are not fully capable of holding your pains and difficulties or your joys for that matter. As clinicians, we can develop and build our capacity to hold another person’s experience as meaningful for them without needing them to sugarcoat or subjugate it for our sake to make us feel better.

Guiding the individual through practice and repetition of basic functional activities will allow the patient to identify for himself or herself how to live successfully in this world again and cultivate this “different way of being” in action, while participating in daily life. At the same time we can encourage our patients to mindfully plan for and visualize their future (see the practice section later) during specific times of their day so that their minds are not in constant worry mode or rehearsing, which can cause a great deal of anxiety about the future. We can assist our patients in using emotion-focused and problem-focused problem-solving strategies as they plan for their future, in the present moment, especially in a medical environment where shorter rehabilitation stays are the norm. And we can do all of this without needing their suffering or pain to go away and without needing them “to get on with it already” and “to adapt.”

Without any need to apologize for their situation, just simply being with them in the moment in a nonjudgmental way and allowing them to grieve (and honoring our own grief) can be a powerful tool for healing. Acknowledging the loss, pain, and the suffering may help patients move forward with their lives in a new way. “Acceptance [of what is] doesn’t, by any stretch of the imagination, mean passive resignation. Quite the opposite. It takes a huge amount of fortitude and motivation to accept what is—especially when we don’t like it—and then work wisely and effectively as best we possibly can with the circumstances we find ourselves in and with the resources at our disposal, both inner and outer, to mitigate, heal, redirect, and change what can be changed” ( Box 5.1 ).

Societal and cultural influences

Culture, subcultures, and the culture and beliefs of the given family are all aspects of the patient that the therapist must be aware of. ^{, ,} This concept gets into the beliefs about the world and maybe a belief about the cause of the disability or at least how the patient is viewing the disability. Asking “Do you notice any beliefs about why this happened?” can lead to an insightful experience. “Causes” may range from “things like this just happen,” “sometimes bad things happen to good people,” to “God is punishing me,” “I deserved it,” or even “life is against me.”

From an early age, people in our society are exposed to misconceptions regarding the disabled. If in the therapeutic environment, however, the patient and family have their misconceptions challenged constantly, they may start reformulating their concept of the role of the disabled person. As this process progresses, therapists and other staff can help make the expectations of the disabled person more realistic. Therapists can schedule their patients at times when they will be exposed to people adjusting to their disabilities. For example, use of individuals who have been successfully rehabilitated as staff members (role models) can help to dispel misconceptions that people with disabilities are not employable.

This process of adaptation to a new disability can be considered as a cultural change from a majority status (able bodied) to a minority status (disabled). Part of the adaptation process can be considered as an acculturation process, and the therapist can help facilitate this process. ^{, , ,}

The cultural background of the individual also contributes to the perception of disability and to the acceptance of the disabled person. Trombly and Radomski state that perception and expression of pain, physical attractiveness, valuing of body parts, and acceptability of types of disabilities can be culturally influenced. One’s ethnic background can also affect intensity of feelings toward specific handicaps, trust of staff, and acceptance of therapeutic modalities.

The successful therapist will be sensitive to the cultural values of the patient and will attempt to present therapy to the patient in the most acceptable way. For example, in the Mexican culture it is not polite to just start to work with a patient; rapport must first be established. Sharing of food may provide the vehicle to accomplish rapport. Thus the therapist might schedule the first visit with a Mexican patient during a coffee break. The therapist must remember that the patient may be the one who may have difficulty adjusting to the therapist and that the therapist may need to adjust to the patient, especially in the early stages of therapy.

Gaining trust is one of the crucial links in any meaningful therapeutic situation. ^{, ,} Trust will create an environment that facilitates communication, productive learning, and exchange of information. ^, Trust is important in all cultures and will be fostered by the therapist who is sensitive to the needs of the patient. This sensitivity is necessary with every patient but will be manifested in many different ways, depending on the background and needs of the individual in a therapy. A patient of one culture may feel that looking another person in the eyes is offensive, whereas in another culture refusal to look into someone’s eyes is a sign of weakness or lack of honesty (shifty eyed). Thus, although it is impossible to know every culture or subculture with which the therapist may come into contact, the therapist must attempt to be sensitive to the background and needs of the patient. Even if the therapist knows the cultural norms, not every person follows the cultural patterns. Thus every patient needs to be treated as an individual in the therapeutic relationship with respect, dignity, and sovereignty. It should be the therapist’s job to be sensitive to the subtle nonverbal and verbal cues that indicate the level of trust in the relationship. The therapist will obtain this information by being open to the patient and their context, not open to a textbook. The patient is the owner of this information and will share it with everyone he or she trusts and those who care to ask. It is OK if we mess up sometimes; this is inevitable. Being human and working in diverse health care settings is dynamic and complex. Holding ourselves in compassion when this happens, learning from the situation, and (if it is called for) apologizing are essential.

Trust is often established in the therapeutic relationship through the therapeutic process of doing physical activities. For example, the act of working with a patient in transferring from the chair to the bed can either build trust or destroy the potential relationship. If the patient trusts the therapist just enough to follow instructions to transfer but then falls in the process, it may take quite some time to reestablish the same level of trust, assuming that it can ever be reestablished. This trusting relationship is so complex and involves such a variety of levels that the therapist should be as aware of attending to the patient’s security in the relationship as to the physical safety of the patient in the clinic. ^, If the patient believes that the therapist is not trustworthy in the relationship, then it may follow that the therapist is not to be trusted when it comes to teaching and learning to participate in newly difficult activities of daily living (ADLs). If the patient does not know how to safely go about their daily activities and thus has not yet built trust in their body or their skill to navigate their ADLs, then lacking trust in the therapist will only compound the stress of the situation. ^{, ,}

The patient’s culture may be unfamiliar to the therapist, even though both the clinician and patient may be from the same geographical region. A patient’s problems of poverty, unemployment, and a lack of educational opportunities ^{, , ,} can all result in the therapist and patient feeling that therapy will be unsuccessful, even before the first session has begun. Such preconceived concepts held by both parties may not be warranted and must be examined. These preconceived concepts can be more reflective of failure of rehabilitation than any physical limitation of the patient.

Cultural and religious values may also result in the patient feeling that he or she must pay for past sins by being disabled and that the disability will be overcome after atonement for these sins. Such a patient may not be inclined to participate in or enjoy therapy. The successful therapist does not assault the patient’s basic cultural or religious values but may recognize them in the therapy sessions. If the therapist feels that the culturally defined problems are impeding the therapeutic process, the therapist may offer the patient opportunities to reexamine these cultural “truths” in a nonjudgmental way and may help the patient redefine the way the physical limitations and therapy are seen. Religious counseling could be recommended by the therapist, and follow-up support in the clinic may be given to the patient to view therapy not as undoing what “God has done” but as a way of proving religious strength. Reworking a person’s cultural and religious (cognitive) structure is a sensitive area, and it should be handled with care and respect and with the use of other professionals (social workers and religious and psychological counselors) as appropriate.

The hospital staff can be encouraged to establish groups in which commonly held values of patients can be examined and possibly reframed or incorporated. ^, Such groups can lead the patient to a better understanding of priorities and may help the person see the relevance of therapy and the need to continue the adjustment process. This can also prepare the patient to better accept the need for support groups after discharge. The therapist may be able to use information from such group sessions to adjust the way therapy sessions are presented and structured to make therapy more relevant to the patient’s values and needs. Value groups or exercises can be another means used by the therapist for evaluation and understanding of the patient.

Beliefs and values of cultures and families can play a profound role in the course of treatment. Such things as physical difficulties, which can be seen, are usually better accepted than problems that cannot be seen, such as brain damage that changed an individual’s cognitive abilities or personality. A person with a back injury may be seen as lazy, whereas a person with a double amputation will be perceived as needing help. At the same time, in some cultures a person who has lost a body part may be seen as “not all there” and should be avoided socially. Therefore being attuned to the culture and beliefs of the patient is imperative in therapy. The reader is encouraged to refer to texts on cultural issues in health care such as Culture in Clinical Care by Bonder, Martin, and Miracle ; Cultural Competence in Health Care: A Practical Guide by Rundle, Carvalho, and Robinson ; and Caring for Patients from Different Cultures by Galanti for more detailed discussions on how culture and beliefs affect health care.

Attachment and evolving sense of self: Foundations of adjustment

The persons we serve in rehab are fellow travelers on a human, developmental, and evolving journey through life—with its experiences, losses and gains, encounters, and opportunities and obstacles. Any treatment we provide is in the context of that journey as a “self” with its ongoing times of crisis, disequilibrium and chaos, reorganization, and integration and change. The therapist seeks to support the person in their current crisis or condition as well as accompany in service of that evolving meaning-making self. And it is helpful to understand where they are in their evolution as a self, not as an evaluation of their stage but as an understanding of their meaning-making.

As humans we are intrinsically, neurobiologically social. From the time of infancy attachment and development, a growing sense of self and other and of efficacy is gradually formed in the container of relationship with a primary caregiver. Burgeoning research on this primary biological, neurological social core process has shown how sense of other and self, relational constructs are developed and then continually grown. We are evolved “in relation.” It is the medium in which we learn and know self, other, and the world and adapt, grow, and evolve. Research has identified basic “good enough” caregiver qualities crucial to a healthy sense of self, and these core qualities in primary relations become internalized as part of growth and development. They can also be thought of as the qualities of a good container for growth and healing. Family, school, friendships, and groups may hold these qualities to greater or lesser degrees, and we need to consider their capacity to be containers.

The following are some basic qualities ideally present for an infant:

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  Physical presence, eye contact, physical contact, consistency, reliability, and interest

  
  
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  Protection

  
  
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  Attunement

  
  
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  Soothing and reassurance

  
  
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  Expressed delight

  
  
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  Unconditional support and encouragement

  
  
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  Felt sense of safety

  
  
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  Felt sense of comfort

  
  
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  As the child develops, encouragement and support for inner and outer exploration

Diane Fosha identifies these similar qualities as therapeutic holding:

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  Empathic attunement

  
  
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  Recognition, affirmation, validation, and valuing of patient’s experience

  
  
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  Expressed care, compassion, and concern

  
  
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  Authenticity and encouragement

  
  
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  Expressed delight

These all help undo the sense of being alone. It can be said that in general these are attributes from without and internalized within that help promote healing, integration, resilience, and growth. These are also functions of community that can be of primary support for patients, families, and caregivers.

Parents who have experienced obstacles in bonding with an infant born with severe illness or disability can access help and support in this area and also take hope that these are potentially areas of continued growth and healing. Health providers must all give primary support for bonding and the primary relationships. Promising research also shows that deficiencies in attachment can be healed and repaired throughout life with attention and support. No one has perfect experiences (see, among others, D. J. Brown, Elliott Treating Attachment Disorders in Adults ).

The holding environment and secure-base experience are themselves corrective emotional experiences for patient in large part because they reduce or “undo” the patient’s sense of being alone with her or his painful experience .

Persons undergoing new injury, insult, or conditions are often experiencing huge changes in perception, processing, and sense of self. They need support as they undergo an often long and slow process of reorientation, recalibration, and reintegration of a changing sense of self. In this regard, the therapist must be attuned to the present state as well as the long and wide view.

Respect for the current stage and state must be maintained while cultivating openings, opportunities, and seeds for adaptation and integration. Digestion of trauma and change cannot be forced. Healing and growth are a spiraling process with seeming backslides as well as gains. Mindfulness practice, where possible for patients, caregivers, and family, can offer experientially gained insight that promotes greater flexibility, acceptance, and perspective on change, identity, and sense of self over time. When experiencing crisis, the notion of a fixed identity dependent on good health, job and family roles, certain physical, mental, or other capacities can be shattered or injured. Much support, holding, and mirroring are needed to both grieve real losses and validate the patient’s experience and value. Many disciplines as well as community and personal networks have a potential role to play over time in supporting the person and their network of caring others who are experiencing their own losses and changes. As time goes on, support groups, consumer groups, community programs, chaplains, counselors, mindfulness groups, or individual support might eventually be incorporated. The trajectory of when a person or family is interested or willing to pursue some of these may vary greatly.

The evolving sense of self: Growth over the life-span

Background to circumstances of health, illness, and changes in abilities and circumstances is the great life project, what Robert Kegan calls the evolution of meaning, the person’s capacity to make sense of life in an adaptive manner, to “make whole.” The spirit is always engaged in a progressive motion, in giving itself new form an endeavor that requires courage and involves losses and eventual gains. This constructive-developmental approach pays attention to the developmental ongoing activity of meaning-making constructing.

Meaning is in its origins, a physical activity, a social activity, a survival activity (in doing it we live). This evolving is the “primary human motion .” Processes of internalization are intrinsically related to the movement of adaptation . — Kegan

Growth is a matter of both differentiation and reintegrating into new connection in a spiraling process, what Piaget calls “decentration,” the loss of an old center, and what Kegan calls “recentration,” the recovery of a new center. We undergo a series of transformations and imbalances and rebalances, “hatching out” of one self and reforming a larger self and larger relationship with the world, with life, finding new states of equilibrium in the world, “between the progressively individuated self and the bigger life field.” And this ongoing conversation with life “is marked by periods of dynamic stability or balance followed by instability and qualitatively new balance.” In each new stage, we are defending, surrendering, and reconstructing a center.

Understanding this adaptive conversation forms a background of our understanding how to better serve patients in pain and transition. As humans, we have this process in common. We are fellow travelers in an evolving life project. We are engaged in growing a point of view. Kegan says, “This activity is about knowing and being, about theory-making and investments and commitments of the self. The same ongoing tension between self-preservation and self-transformation is descriptive of the very activity of hope itself.”

Undoing aloneness: The need for community, friendship, belonging.

From infancy on, it is essential to know that we exist in the heart and mind of another. This is our core relational need—to be recognized, seen, and known and to matter to one another. There are two powerful and profound yearnings in human existence and experience. One is unity: to be included, to be part of, close to, joined with, to be held, admitted, and accompanied. The other is a desire for agency and differentiation: to be independent, to have a unique and separate integrity, and to choose one’s own direction. There is an ongoing dynamic tension between these yearnings, and as we grow in development, we spiral through different balances leaning toward one or the other. We are increasing our understanding and differentiation as well as expanding our integration of the world and life. This very much models the experiences of mindfulness practice: that one is knowing, becoming more familiar increasing perception and specificity of understanding self and experience, and simultaneously expanding the sense of an “I” to include more of life. A sense of safety is essential to this life enterprise of evolving stages of self and other and our construct of the world.

The good-enough “holding environment,” described by Winnicott in infancy, is something that accompanies us throughout life. We live in a series of holding environments, in our history of embeddedness. They are the mediums that hold us and include us, and from which we differentiate. As Kegan says, “Your buoyancy or lack of it, your own sense of wholeness or lack of it, is in large part a function of how your own current embeddedness culture is holding you.” ^,

“Good enough” holding environments—as in infancy and beyond—are containers and mirrors to the self we are and a bridge to the self we are becoming, and a stable presence for the transition in between when one self with its evolutionary truce is gone and the organization of new meaning-making is in transition. Cultures of embeddedness are often inadequate in our society and modern way of life, especially in times of crisis and change. We need to really consider how to create or connect to these ongoing supports of continuity through change.

Mitigating a sense of aloneness and isolation aids healing and recovery. We share a common humanity, and we all take on different roles in life at different times. As social beings, we need to be connected. Humans can bear hardship with the feeling of being accompanied by others. Healing and living fully happen in relation to others. Illness, crisis, disability, and stress can easily lead to isolation and a negative spiral of effects. We need positive mirroring and authentic affirmation of strengths and value. We need to be included and belong, as well as be valued for our uniqueness and agency. We need to know we positively affect others. Some of the most effective community programs have started as tiny grassroots initiatives and have simply grown out an unmet need, which include the Cabrillo College Stroke Center ( https://www.cabrillo.edu/academics/strokecenter ) and the Shurig Center for Brain Injury Recovery ( https://www.schurigcenter.org ). Because there was such a big need, they often grew into established vibrant and funded programs over time. Having regular times to meet and share with others provides an important buffer for individuals, caregivers, and families.

In speaking to our need to live in the context of community, Kegan says, “among its most important benefits is its capacity to recognize a person, a marriage, a family, over time and to help the developing system recognize itself amid the losses and recoveries of normal growth.” Healing communities can provide a safe support and serve to affirm and recognize individuals, acknowledge losses and growth, and value people. A crisis or illness with loss often includes a loss of how one creates meaning.

The patient’s loss and grief brought on by disability or injury can be experienced as the “dying of a way to know the world which no longer works, a loss of an old coherence with no new coherence immediately to take its place. And yet a new balance again and again does emerge . . . Still, it is a new life not a return or recovery. We will never restore the (old) balance—but there is a new balance that can be achieved. We are not going back, but we are coming through- to a new integration, a new direction.”

As therapists, we are accompanying and collaborating with the person in their meaning-making process when their process has been threatened. Fosha, et al, reminds therapists, “We are wired to heal, to right ourselves, to grow and transform. It is what neuroplasticity is about.” Furthermore, “People have a fundamental need for transformation. We are wired for growth and healing. And we are wired for self-righting and resuming impeded growth. We have a need for the expansion and liberation of the self, the letting down of defensive barriers and the dismantling of the false self. We are shaped by a deep desire to be known, seen, and recognized, as we strive to come into contact with parts of ourselves that are frozen.”

We want to take note of the state of the person’s vitality and life-force and notice areas of aliveness and obstacles to that life force. Areas of aliveness and wellness needed to be seen and felt, along with more difficult emotions. As Hildegaard de Bingen noticed, the tendency of a living thing is to return to its essence after being wounded, and promoting aliveness and healing involve a lot of time to see who a person is. The long-range view of healing and resources for patients beyond our own contact is of primary importance. We want to encourage healthy social connectedness and hope to expand those possibilities.

Building resilience: Felt sense as an underpinning for positive strengths and neural integration

Felt sense, a most basic way that we know our experience, is actually a skill that can be cultivated and used to support our more accurate and fully owned bodily perception, emotional knowing and regulation, and neural integration. Increasing capacity for felt sense—bringing attention in present time to the sensory sensations of the body—provides a way to anchor in the body and breath, self-regulate, and increase self-knowledge. Wellness can be described as a byproduct of our ability to tolerate our internal experience. Having a stable caring environment along with mindful felt sense (an internalized holding) increases that capacity to be with our experience. Hendel and others refer to the the body as the place of deep emotional knowing. It is an important stepping stone, increasing capacity for meta-cognition, a sense of insightful “knowing that you know” important to healing and growth. Felt sense is an important part of bringing attention and anchoring positive states in the body and thus wiring them into the brain.

As the qualities of the good enough caregiver (including how we care mentally and emotionally for ourselves) are the food for optimal brain development, in the same way the capacity to feel and sense and drink in positive states and experiences supports positive neuroplasticity in the service of adjustment and healing. ^,

Bringing attention to one’s experience and amplifying the positive felt experience make them more “known.” Gergely’s research on marked expressivity, marked affectivity is mirrored with exaggerated content and tone so that the experience is “marked” as having happened, as important, and as belonging to the self. ^, In other words, it is known, owned, and wired in the brain more effectively and with greater efficiency, a way that neuroplasticity is utilized for healing. This capacity is increasing the ability to receive positivity, making the most of it, and in the process building up strengths and capacities so the process becomes a self-enhancing loop.

The development of the capacity for felt sense and safety, is the doorway to digest emotions associated with suffering and release subconscious, adaptive action tendencies. Fosha describes in her Accelerated Experiential Dynamic Psychotherapy model that all affective states, in an adequate holding environment, are seeds for deeply transformative experience and development. Understanding this important insight can orient us to highlight this holding environment and build it into the way we structure and enact therapeutic environments and experiences as a foundational support. Presence, being with, cultivating sensing, and mindfulness all affect the quality of the healing capacity. Mindfulness and positive relational experiences of safety, being seen and known, heard, and acknowledged, grow areas of interconnectedness in the corpus callosum, hippocampus, and prefrontal cortex. These relational experiences can happen in ongoing groups and cultures of belonging. Another resource of patients with capacity to develop attention and for caregivers is classes in mindfulness, which in addition to other benefits mentioned, is protective against depression and depression relapse. A secondary condition resulting from brain injury or other neurological events can be clinical depression, which must be addressed by the care team.

Establishment of self-worth and healthy body image

The true value of a human being is determined primarily by the measure and the sense in which he has attained liberation from the self . — Albert Einstein

Self-worth is composed of many aspects, such as body image, sexuality, and the ability to help others and affect the environment. The body image of a patient is a composite of past and present experiences, familial and cultural influences, and the individual’s perception of those experiences. Because body image is based on experience, it is a constantly changing construct. An adult’s body image is substantially different from the body image of a child and will no doubt change again as the aging process continues. A newly disabled person is suddenly exposed to a radically new body, and it is that individual’s job to assess the body’s capabilities and develop a new body image. Because the therapist is at least partially responsible for creating the environmental experiences from which the patient learns about this new body, the therapist must be aware of the concept. In the case of an acute injury, the patient has a new body from which to learn and experience. The therapist can promote positive feelings as the therapist instructs the patient how to use this new body and to accept its changes. ^{, , , , ,}

Because in “normal” life we slowly observe changes in our bodies, such as finding one gray hair today and watching it take years for our hair to turn totally white, we have the luxury of slowly adapting to the “new us.” Change usually does not happen quite so slowly and “naturally” when trauma or a disease affects the nervous system. This sudden loss of function can create a void that only new experiences and new role models can fill.

The loss of use of body parts can cause a person to perceive the body as an “enemy” that needs to be forced to work or to compensate for its disability. In all cases the body is the reason for the disability and the cause of all problems. The need for appliances and adaptive equipment can create a sense of alienation and lack of perceived “lovability” resulting from the “hardness of the hardware.” People tend to avoid hugging someone who is in a wheelchair or who has braces around the body because of the physical barrier and because of the person’s perceived fragility; a person with physical limitations is certainly not perceived as soft and cuddly. ^{, , , ,} Both the perception that these individuals are not lovable and their labored movements can sap the energy of the disabled and discourage social interaction or life participation. To accept the appliances and the dysfunctional body in a way that also allows the disabled person to feel loved can be a significant challenge.

In the case of a person who will be disabled for the long term, such as the person with cerebral palsy or Parkinson disease, the therapist is attempting to teach the patient how to change the previously accepted body image to one that would allow and encourage more normal function. In short, the therapist has two roles. One role is to help lessen the disabled body image. The second is to teach a functional disabled body image to a newly disabled person. The techniques may be the same, but in both cases the patient will have to undergo a great amount of change. The person with a neurological disorder or neurologically based disability may assume that he or she will not be capable of accomplishing many things with his or her life. The therapist is in a unique position to encourage development of and maximize the patient’s level of functional ability. The individual may then expect more of himself or herself. The newly disabled person must change the expectations; however, he or she has little concept of what is realistic to expect of this new body. At this point, role models can be used to help shape the patient’s expectations. If the patient is unable to adjust to the new body and accept the body image and self-expectations, life may be impoverished for that individual. Pedretti states that the patient with low self-esteem often devalues his or her whole life in all respects, not just in the area of physical dysfunction. ^{, , , , ,}

One way the patient can start exploring this new body is by exploring its sensations and performance. Dr. Jon Kabat-Zinn developed a guided “body scan” meditation that can help individuals learn how to become more connected and in tune with the sensations of the body. This kind of practice is about learning to pay attention to the body in a new way and can be very helpful in developing an accurate body image and improve self-awareness. For example, the patient with a spinal cord injury may also use the sensation of touch to “map out” the body to see how it responds. Including the whole body, encompassing the felt experience as part of sensory awareness, even though that may include unfamiliar sensations, numbness, and lack of sensation, is helpful in this regard. They may ask themselves the following questions: Is there a way to get the legs to move using reflexes? Can positioning the legs in a certain way aid in rolling the wheelchair or make spasms decrease? Such exploration will start the patient on the road to a self-informed and personally empowered evaluation of his or her abilities.

The therapist’s role is to maximize the patient’s perceptions of realistic body functioning. Exercises can be developed that encourage exploration of the body by the individual and, if appropriate, the significant partner. Functioning and building an appropriate body image will be more difficult if intimate knowledge of the new body is not as complete as before injury. The successes the patient experience in the clinical setting, coupled with the patient’s familiarity with his or her new body, will result in a more accurate body image and contribute to the patient’s feelings of self-worth.

The last aspect of self-worth is often overlooked in the health fields. This aspect is the need that people have to help others. People often discover that they are valuable through the act of giving. Seeing others enjoy and benefit from the individual’s presence or offering increase self-worth. Situations in which others can appreciate the patient’s worth may be needed. Unless the patient can contribute to others, the patient is in a relatively dependent role, with everyone else giving to him or her without the opportunity of giving back. Achieving independence, understanding common interdependence, and then reaching out to others, with therapeutic assistance if necessary, facilitate the individual’s more rapid reintegration into society. The therapist should take every opportunity to allow the patient to express self-worth to others through helping and giving back to their family and community.

The ability to expand one’s definition and experience of oneself is a key factor in adjusting to a disability. Expanding the experience of oneself in terms of all the roles and responsibilities one has or gently holding an experience of oneself that is so much greater than just the physical realm can help the individual comprehend the enormity of who he or she is. As humans, we have the capacity to understand how we are so much greater than just the job we once performed and so much greater than the role we once played. This practice can cultivate understanding of how complex our species is, it can humble us by acknowledging the vastness of our place within the universe and on this planet, and how much we have to offer the world (God knows the world certainly needs us), differently abled or not (see the journal activity in Box 5.1 ).

Sense of control

Oh, I’ve had my moments, and if I had to do it over again, I’d have more of them. In fact, I’d try to have nothing else. Just moments, one after another, instead of living so many years ahead of each day . — Nadine Stair, 85 years old, Louisville, Kentucky

In her poignant quote, Nadine Stair speaks to an understanding that we all have the capacity to choose how we will experience every given moment of our lives. There is so little in life that we actually have control over and our dominant culture doesn’t teach what we do have control over, which is how we relate to every moment of our lives. We can intentionally choose to be present, and once we know this is so, we have control over our quality of attention, our level of attention, and our intention. So as humans we can develop these capacities and in doing so we build a greater and greater sense of self-control over our lives. While this sounds simple, it can be profoundly life changing and empowering on many levels. All the while we are exercising our choice to be intentionally present in a specific way and we are building neuroplasticity to choose every single time so that we will more likely be present when the going gets tough.

As Drs. Roizen and Oz stated in their book You: The Owner’s Manual , we can control our health destiny. Although we can’t always control what happens to us (no matter how fit we are), there are some things we can control: our attitude, our determination, and our willingness to take our own health into our own hands.

Adjusting to a disability can make patients feel as though they have very little control over their lives; they may feel helpless, as though their health is in everyone else’s hands but their own. This feeling can cause incredible suffering and emotional anguish on top of their physical or cognitive disability. If we focus solely on treating the disability and ignore what may be going on for our patients mentally and emotionally, we may be creating even more suffering for them. Clinical professionals have the opportunity to guide their patients toward a new way of relating to their disability by focusing on what they do have control over as well as identifying ways in which they may relate differently to those situations over which they do not have control.

Dr. Jill Bolte-Taylor says this eloquently in a passage from her book:

I’ve often wondered, if it’s a choice, then why would anyone choose anything other than happiness? I can only speculate, but my guess is that many of us don’t exercise our ability to choose. Before my stroke, I thought I was a product of my brain and had no idea that I had some say about how I responded to the emotions surging through me. On an intellectual level, I realized that I could monitor and shift my cognitive thoughts, but it never dawned on me that I had some say in how I perceived my emotions . . . What an enormous difference this awareness has made in how I live my life .

“I had some say in how I perceived my emotions.” Let’s wonder out loud about this statement. As Dr. Bolte-Taylor describes, all of us have the choice to be in relation to the present moment fully, or we can allow our thoughts and emotions to “take us for a ride” as though we were on automatic pilot. If we allow our minds and emotions to take over our experience of the present moment without any awareness or personal choice, we can feel powerlessness and be dragged along into rehashing our past events that led up to the disability, which can create more suffering and emotional anguish. We also may be rehearsing what our lives will be like without allowing the dust to settle, without waiting until we have a clearer picture of what implications the disability may have for us. An unacknowledged rehashing and rehearsing can create an incredible sense of lack of control over one’s life, which can lead to anxiety and depression.

Approximately 70% of our thoughts in any particular waking state can be considered to be daydreams, and they can often be unconstructive. In an experience sampling method, Klinger and his colleagues found that “active, focused problem-solving thought” made up only 6% of the waking state. According to Baruss, “it would make more sense to say that our subjective life consists of irrational thinking with occasional patches of reason” while we are participating in our daily activities. Especially when one is participating in menial, basic self-care activities, our mind is most often in another place. For the most part, our modern North American culture does not teach the skills of mindful, present moment awareness or emotional intelligence.

If an individual is frequently disconnected from the present moment, tending to unconsciously ruminate over negative past or future events, he or she may experience significant negative effects from this perpetual distraction. Unacknowledged rumination, absorption in the past, rehashing, or fantasies and anxieties about the future can pull one away from what is taking place in the present moment. Awareness or attention can be divided without conscious choice, such as when people occupy themselves with multiple tasks at one time or preoccupy themselves with concerns that detract from the quality of engagement with what is focally present, and this can increase a sense of disempowerment, anxiety, and depression. Anxiety and depression can be signs of underlying problems that are unacknowledged. Anxiety and depression are not the problem in and of themselves.

Being sad and feeling depressed or anxious, for example, are completely appropriate responses to so many situations that ail us culturally, socially, ecologically, economically, politically, and personally. So we must be careful in our “diagnosis” of what ourselves or others may be experiencing and feeling and not necessarily labeling “the ailments,” the suffering, the strong emotional experiences as dysfunctional when the responses to those events or situations may be completely appropriate to the situation and may actually help bring meaning to one’s life, motivation, and emotion-focused problem solving, discernment, and skillful action.

On the other hand, according to Drs. Roizen and Oz, emotions can cause high blood pressure, as well as disrupting the body’s normal repair mechanisms. Low-level, perpetual, and unacknowledged states of stress can also constrict our blood vessels, making it even harder for enough blood to work its way through the body. At the same time, stress is also shown to encourage bonding responses that actually work to bring people together in community ( https://www.ted.com/talks/kelly_mcgonigal_how_to_make_stress_your_friend ). Also called the “tend and befriend reflex,” stress can be our friend if we can change our relationship to stress, acknowledge it, honor it for the message it may be sending, and hold it gently in awareness. Learning relaxation techniques such as yoga and meditation can help us build the skills of awareness, clarity, and self-compassion to honor these strong emotions and feelings of stress in our bodies. Learning to allow and honor our human experience, learning how to relate to our feelings and emotions with clarity, discernment, and care is an essential process of learning how to be in skillful relationship to our feelings. Numbing and subjugating our feelings, as our modern North American culture often teaches, is not the answer.

However, we know now that all mind states affect our bodies profoundly whether we are feeling joy, wonder, and awe or jealousy, rage, and hopelessness—for example, a feeling of helplessness appears to weaken the immune system, yet joy and wonder release hormones associated with well-being. We can teach ourselves and our patients to be mindful of and pay attention to our mind states, feelings, and thoughts during therapeutic intervention. In this way and with the skills of mindful awareness, we can encourage a greater sense of personal control and facilitate greater mental and emotional equilibrium and adjustment to the individual’s disability. According to a 2008 article by Ludwig and Kabat-Zinn in JAMA, “the goal of mindfulness is to maintain awareness moment by moment, disengaging oneself from strong attachment to beliefs, thoughts, or emotions, thereby developing a greater sense of emotional control, balance, and well-being.”

The key here is in the practice of loosening attachments or clinging to any specific mind state so that as we begin to notice mental phenomena, we can choose how we wish to respond. We can let go of the thought and focus our attention on the present moment at hand, or we can hold the thoughts, emotions, and feelings in awareness. We can honor and appreciate our experience as it is without needing it to be any other way, or we can choose another thought or feeling or emotion altogether. Of course this sounds easy, but this takes practice and attitude of kindness, patience, compassion, and a specific kind of intention. One intention is to develop the capacity to build greater and greater degrees of awareness of the sensations of our bodies and to recognize and appreciate the messages of our bodies. Anat Baniel, in her book Move into Life , describes how research shows that the moment we bring attention and awareness to our body’s movements moment by moment, the brain resumes growing new connections and creating new pathways and possibilities for us.

According to a research study by Dr. Jon Kabat-Zinn of the Stress Reduction Program at the Center for Mindfulness in Medicine, Health Care, and Society, the practice of mindfulness meditation used by chronic pain patients over a 10-week period showed a 65% reduction on a pain rating index. Large and significant reductions in mood disturbance and psychiatric symptoms accompanied these changes and were stable on follow-up. Another study looked at brain imaging and immune function after an 8-week training program in mindfulness meditation. The study demonstrated that this short program in mindfulness meditation produced demonstrable effects on brain and immune function. The results of a clinical intervention study by Brown and Ryan showed that higher levels of mindfulness were related to lower levels of both mood disturbance and stress before and after the Mindfulness-Based Stress Reduction (MBSR) intervention. Increases in mindfulness over the course of the intervention predicted decreases in these two indicators of psychological disturbance. Evidence has indicated that those faced with a life-threatening illness often reconsider the ways in which they have been living their lives, and many choose to refocus their priorities on existential issues such as personal growth and mindful living.

These findings suggest that meditation may change brain function and immune function in positive ways. “Meditation,” as it is taught in this 8-week program, is simply an awareness and attention training: a way of learning how to pay attention in the present moment to our bodies, thoughts, and emotions, and coming to understand how our thoughts and emotions affect our bodies. It may sound simple but actually can be incredibly challenging due to our cultural conditionings. However, an instant stress reliever can be bringing awareness to the breath. Deep breathing can act as a mini-meditation, and from a longevity standpoint, it is an important stress reliever. Shifting to slower breathing in times of tension can help calm us and allow us to perform, whether mentally or physically, at higher levels.

Another study, focused on Coping Effectiveness Training (CET), consisted of weekly 60-minute psychoeducational group intervention sessions focused on six topic areas and was adapted from the protocol Coping Effectively with Spinal Cord Injury. The treatment protocol was structured to provide education and skill building in areas of awareness of reactions to stress; situation appraisal; coping strategy choice; interaction among thoughts, emotions, and behaviors; relaxation; problem solving; communication; and social support. There was a significantly positive correlation between the learned coping strategies and the disabled individual’s ability to adjust in a healthy way.

Hope, grief, and spiritual aspects to adjustment for the patient and therapist

To feel the consequence of your absence is what awakens in you the ability to feel absence. Seeing the end of something precious to you gives you the chance of loving it well. Loving and grieving are joined at the hip, for all the beauty, soul, and travail that brings. Grief is a way of loving what has slipped from view. Love is a way of grieving that which has not yet done so. We would do well to say this aloud for many days, to help get it learned: Grief is a way of loving, love is a way of grieving. They need each other in order to be themselves. You can learn how to be a faithful witness, to be wrecked on schedule, to put your grief in your carry-on bag together with your other treasured things . Grief has to be learned, which means it has to be taught. Which means it is possible not to learn it. When we keep insisting on grief being a feeling, or a process that needs management and closure, we are talking about grief as an affliction, the same way we talk about dying. But something changes when we start seeing grief as a skill that needs learning, which is what it is. As a culture we are grief-impaired not because we don’t have what we need to feel bad, but because we are grief-illiterate. We aren’t taught to grieve; we are taught to handle grief, to resolve grief, to get on the other side of it . — Stephen Jenkinson, from Die Wise: A Manifesto for Sanity and Soul (2015)

Through the process of grappling with great suffering, we have the potential to grow deeper levels of understanding of life, meaning, and purpose, and from this process and practice of navigating and wrestling with life’s challenges, we come into contact with our own and shared humanity, the heartbreak that seems to be a perpetual part of being human in these times of personal, global, economical, political, cultural, and ecological crisis. Our capacity and willingness to show up for the heartbreak change how we are in relationship to ourselves, to our bodies, and to life itself. As clinical professionals we need to be more than just aware of this capacity, we need to be practitioners of it and model it in our lives and work. This is a process of developing a self-evident knowing and embodied experience of how our greatest sufferings can act as potential windows to great depth of meaning in the process of living with fresh eyes as we relate to ourselves and behave and act in the world differently and with a chosen narrative rather than a default one.

Experiences of transcendence can be considered a potential problem for developing these capacities, as we are often taught in this culture that numbing and subjugating one’s experience is a sought after way of relating to difficulties, and we are provided with a plethora of opportunities and numbing devices to choose from, such as excessive busyness, sugar, industrialized food products, media, pornography, gambling, drugs, alcohol, and gaming, just to name a few. So it is possible that we could use spiritual practices as a way to numb ourselves when life becomes uncomfortable. However, with a strong mindfulness practice in development, practices of transcendence can provide a process that can help us create a new normal for ourselves, as transcendence can alter our culturally pervasive narratives and stories about how we are meant to relate to our lives, and we can get glimpses of other-than-human perspectives and broader, more encompassing meaning of our lives. Our North American culture narrative perpetuates a view of “the living” as able-bodied, with full-time-plus work that brings in an income so that we can be “independent” consumers and play the worshipful part on the stage of an epic global economy. Our physical body, our relationship to the physical-linear realm, and a clinging to all of “the stuff” are of utmost importance in this cultural narrative. Youthful health and appearance and the endless acquisition of more stuff are presented endlessly in our media culture. A great rupture in this narrative can happen when we sustain a fissure in our capacity to fulfill this pervasive narrative, which can cause us to suffer greatly.

As described by Dr. E. Cassel in the New England Journal of Medicine , “Transcendence is probably the most powerful way in which one is restored to wholeness after an injury of personhood. When experienced, transcendence locates a person in a far larger landscape. The sufferer is not isolated by pain but is brought closer to a transpersonal source of meaning and to the human community that shares those meanings. Such an experience need not involve religion in any formal sense; however, in its transpersonal dimension, it is deeply spiritual.” Parker Palmer, a writer and teacher, describes it this way: “Treacherous terrain, bad weather, taking a fall, getting lost—challenges of that sort, largely beyond our control, can strip the ego of the illusion that it is in charge and make space for true self to emerge.” Eckhart Tolle describes how unnecessary suffering ensues when we are so completely identified with and hang our identities purely on form—physical form, thought form, and emotional form. The more we are identified with and grasping to the physical realm of our human existence, without any recognition or acknowledgement of a realm beyond the human one, the more we suffer when our attachment to stuff or “form” becomes torn through disability or even death of all kinds. In Stephen Jenkenson’s book Die Wise , he describes how our modern, North American, death-phobic culture is in part a product of this kind of obsession with the living and how we go to great lengths even to die, not dying.

So, it seems a paradox of sorts and a particular challenge to develop the capacity to both release our attachments to unconscious, hand-me-down narratives that can play out in our lives and in our beliefs about our lives and at the same time to open to our humanity as it relates to our capacity to wrestle with life-changing circumstances as well as (and maybe most importantly to) the simple, mundane acts of engaging with our daily lives with openness and curiosity. “For all of us, our willingness to explore our fears and to live inside helplessness, confusion, and uncertainty is a powerful ally. Acknowledging our repeated exposure to human suffering—our own and others’—and the seductive draw of numbness and melancholy that provides temporary escape is necessary if we are to be renewed.” Dr. Santorelli goes on to say that “there is no way out of one’s inner life, so one had better get into it.” “On the inward and downward spiritual journey, the only way out is in and through.”

Adjustment using the stage concept

Each person has his or her own coping style, and each should be allowed to be unique. Kerr describes five possible stages of adjustment, but please hold these stages lightly as we can oversimplify human experiences and want to rush people along the stages if we feel like it’s not quick enough for us, especially considering our dominant cultural view that we need to “move on” or “get on with it already,” and if we are not progressing through these kinds of stages, we might even get slapped with a diagnosis of depression or anxiety disorder etc.:

Shock: “This really isn’t happening to me.”

Expectancy for recovery: “I will be well soon.”

Mourning: “There is no hope.”

Defense: “I will live with this obstacle and beat it.” “I am adjusted, but you fail to see it.”

Adjustment: “It is part of me now, but it is not necessarily a bad thing.”

In light of current research, it is important for the therapist to realize that these are not lockstep stages and are to be thought of as concepts to help with the understanding of common reactions of some individuals. ^, Some individuals may settle in one stage for quite some time or may even skip stages altogether, whereas others may move through the stages quickly. This is an incredibly individual process.

Body image

Self-care is never a selfish act—it is simply good stewardship of one of the greatest gifts I have been given, the gift I was put on this earth to offer to others. Anytime we can listen to true self and give it the care it requires, we do so not only for ourselves but for the many others whose lives we touch .

Self-care and body image are inextricably connected, and when we build the skills of caring for ourselves (and modeling this behavior for our patients), we affect how we relate to our bodies and we can heal our relationship to our bodies, and this affects how we think about our bodies. Body image is an all-encompassing concept that considers how the person, and to some extent, the support systems view the person and roles that are expected to be assumed. Taleporos and McCabe found that patients had negative feelings about their bodies and general negative psychological experiences after injury. Even when patients do not have disfigurements that are readily observable, they often still report changes in body image and negative feelings of self-worth.

Self-care is an important practice for our health, sense of self-worth, and well-being particularly when we are going through intense life experiences, and caring for ourselves on many levels can build a strong and resilient body image. Our culture often neglects self-care as an important part of building resilience and stress-hardiness, yet caring for oneself can significantly enhance our view of ourselves, especially when that view may be tested. Self-care can include eating food that is life-enhancing, getting adequate sleep, not saying yes to every activity or opportunity, participating in support groups and counseling services, getting a massage, spending time with friends and family who nourish us, and listening to our favorite music. As clinicians we can support our patients by encouraging them to establish self-care routines that support their resilience, health, and well-being.

Questions about any physical performance are within the domain of therapy. If the patient is asking for information regarding sex (e.g., positioning options), it is a subject that needs to be addressed in a respectful manner. If the questions are regarding fertility, capability, and the like, then these should be referred to an appropriate medical person. None of these questions should be discouraged or neglected, because this area is important for your patients’ motivation and sexual health. ^, It is important for the therapist to know that in spinal cord injury, fertility will generally not be impaired for a woman, but issues of lubrication before sex should be addressed by the appropriate person. Men may have erection problems and ejaculation issues, but these too can be addressed by the appropriate medical practitioner. It is now known that fertility in spinal cord–injured men may be possible and should not be ruled out. ^,

Support system

Earlier literature hinted that partner relationships may be negatively affected by a member being disabled. Within the last few years, this concept has been questioned in regard to some disabilities such as adult-onset spinal cord injuries, whereas pediatric spinal cord injury and other disabilities may result in relationship problems. ^, It has been shown that adjustment and quality of life can be adversely affected by the physical environment being inadequate, thus making the person more dependent. The result of the dependence appears to be poor relationships. This can also be seen with the families in which a member has had a brain injury. ^, In studies on muscular dystrophy, it was found that physical dependence is not the only variable that needs to be considered. Psychological issues need to be identified and considered as part of intervention. ^, Recent literature has identified a number of elements that the patient and the family may need help to work on, such as “to assist them to develop new views of vulnerability and strength, make changes in relationships, and facilitate philosophical, physical, and spiritual growth.” Turner and Cox also felt that the medical staff could facilitate “recognizing the worth of each individual, helping them to envision a future that is full of promise and potential, actively involving each person in their own care trajectory, and celebrating changes to each person’s sense of self.” Man observed that each family copes differently in relation to a brain-injured family member and that the family’s structure should be explored to develop intervention guidelines. It has also been noted that health care professionals should view the situation from the family’s perspective to approach and support the family’s adaptation. This should be done to help the patient and the family accept the disability but at the same time help them keep the negative views of society in perspective. In general, it has also been found that family support is a significant factor in the patient’s subjective functioning ^, and that social engagement is productive. ^, According to Franzén-Dahlin and colleagues, enhancing psychological health and preventing medical problems in the caregiver are essential considerations to enable individuals with disabilities to continue to live at home. Their research found that evaluating the situation for spouses of stroke patients was an important component when planning for the future care of the patient.

When working with children, it is important to realize that they often feel responsible for almost anything that happens in life, such as divorce, siblings getting hurt, or general arguments between parents. It is important that the therapist help the patient and the siblings realize that they are not responsible for the patient’s condition. Part of this magical thinking that often appears is the concept that “bad things happen to bad people.” Thus the child may consider themselves as bad because a bad thing has happened, or the adult is bad just because the disease or trauma has occurred. It is important to be sensitive to this ideation and help dispel this maladaptive thought pattern because it is not true or productive for the patient, the siblings, parents, or spouses within a family and may cause further adjustment problems later in treatment. Siblings of the patient should be encouraged to see their roles as good siblings and should not be placed in the role of caretakers of a sibling with special needs. In this way, all children can grow naturally without any one of the children being overly focused on. At the same time, it is a fact of life that the disabled child will probably need physical assistance, therapy, increased medical care, and thus and more time devoted to him or her, and this is just a fact of life.

It should always be noted by the medical establishment that having a disability is expensive in ways that we are often not aware of. There are obvious medical costs of therapy, surgery, drugs, wheelchairs, or orthoses, but there are other costs such as the possibility of extra cost of transportation, catheters for urination, wheelchair maintenance, adaptive clothing, and the like that are continuing costs not covered by most insurance plans. These costs add up and contribute to the emotional costs and demands on the family. The significant others may feel the need to work more to have the money to cover such expenses, but then that person is not around to help out. This is but one of the many dilemmas that must be acknowledged for the support system of the disabled person. The family may be encouraged to contact groups such as the Family Caregiver Support Network ( www.caregiversupportnetwork.org ) to get information and assistance on such diverse topics as being a caregiver, legal and financial aid, and communications (this group tends to focus on the adult but still may be a wonderful aid). Such groups will give information to all who need it and help to empower the family. This takes the focus off of the medical condition and may help the family to gain a better, more balanced perspective on the condition.

Loss and the family

In this chapter, the patient’s support system is referred to as the family. The family may be composed of spouses, parents, children, lovers (especially in gay and lesbian relationships), friends, employers, or interested others such as church groups, civic organizations, or individuals. The people in the support system may go through the same stages of reaction and adjustment to loss that the patient does. ^{, , ,}

Coping with transition

Learning to suffer, wrestle with tragedy, and grapple with catastrophe is a skill set that we are not taught to any degree in our modern North American culture. In fact, we are systematically taught how to numb and subjugate challenging circumstances, and we are given ample opportunities to do so; this cultural training begins at an early age. Media, refined and processed highly addictive food products, excessive busyness and consumption, gambling, alcohol, drugs, pharmaceuticals, and others all constitute an epic part of our cultural experience across the life-span. We all participate in and perpetuate this system to some degree. The benefit, if there is such a thing, is that we can all tap into the experience of it ourselves, because we have our own embodied experience of how this feels and what this looks like in our daily lives.

We call it “Coping with Transition,” with the subtle, undercurrent of meaning that “we need to just get over it already”—whatever that is. “Just cope, please, for all our sakes, so we don’t have to be with the messiness of too much grieving, too much anger, or too much despair.” The subtle message is, “It’s just too uncomfortable for me, and I wasn’t taught how to be in wise relationship to suffering, so please just get on with it so we can get on to meeting your goals so I can get paid for being a “good therapist” who helps their patients meet goals.” Witnessing suffering, our own and that of others (including the planet-in the case of the 6th wave of extinctions; Kolbert, 2014), makes us all uncomfortable because we were born into and trained to be suffering-phobic, strong-emotion phobic, and death-phobic. So it is likely you will notice this in yourself. We all need to learn, on the job, with training in mindfulness under our belts, to develop a new relationship to suffering, where we can become engaged, compassionate witnesses to what is unfolding.

Without this skill development, we may be more likely to have our own present-moment experience co-opted by another’s to the degree that we dissociate and fall back on the standard cultural narratives we’ve learned since childhood. With the developing skills of learning how to be in relationship to the messiness of life’s human (and otherwise) tragedies, we can learn to stay grounded and rooted in our being, all the while being present to and in some level of acceptance of what needs to be seen and heard and witnessed without needing to numb or subjugate our experience. Begin a process of learning how to be a compassionate witness to your own suffering, your own emotions, and your own embodied experiences. This is the only way that you will be able to support someone through the trauma of catastrophic, life-changing circumstances. If you haven’t already, engage in mindfulness training as soon as possible and begin.

With all of this in mind, in the acute stages of a family member’s injury, we can support the family in grappling with the crisis at hand by bearing witness to their experience without needing to change it in any way and just noticing what comes up for you personally as you notice and listen to all that is unfolding. During this phase (that can take any length of time), the family must first be allowed the space to cope, in their own way, with the emotional impact of what is happening with a loved one. When we force our views that our patient’s grief or anger or any other strong emotion must be overcome, we may be engaged in perpetuating dysfunctional North American cultural conditioning or what Dr. Robert Masters calls spiritual bypassing .

Spiritual bypassing, a term first coined by psychologist John Welwood in 1984, is the use of spiritual practices and beliefs to avoid dealing with our painful feelings, unresolved wounds, and developmental needs. It is much more common than we might think and, in fact, is so pervasive as to go largely unnoticed, except in its more obvious extremes .

In a previous version of this chapter, you will see a standard narrative of the stages of coping listed. It helps to know the literature that is out there around these kinds of stages, but they may be more useful if we hold them lightly and in perspective of the larger cultural narrative around coping that we are all complicit in perpetuating. For example, Brammer and Abrego have developed a list of basic coping skills that they have broken into five levels. In the first level, the person becomes aware of and mobilizes skills in perceiving and responding to transition and attempts to handle the situation. In the second level, the person mobilizes the skills for assessing, developing, and using external support systems. In level three, the person can possess, develop, and use internal support systems (develop positive self-regard and use the situation to grow). The person in level four must find ways to reduce emotional and physiological distress (relaxation, control stimulation, and verbal expression of feelings). In level five, the person must plan and implement changes (analyze discrepancies, plan new options, and successfully implement the plan). Using this model, the therapist and family can evaluate the coping skill level of the family. The therapist and staff are often prompted to promote movement toward the next level of coping with the transition. The stages listed are not the problem in and of themselves. The problems arise when we begin forcing or manipulating our patients, however good our intentions, “to move on already,” and we might even work to try to move them on to the next stage, as previously described. This is a pervasive problem we have all been privy to; it is applauded as an integral part of the health care system and way of doing things, and so it helps to hold this reality and realization with gentleness and self-compassion.

Another complex challenge we face as clinicians is encouraging a balanced perspective about disability. One consequence of hospitalization in managing the care of a newly disabled person is that the hospital staff can often focus on the disability rather than on the individual’s strengths. ^{, ,} Centering on the disability can lead to a situation in which patient, family, and staff see only the functional limitations and not the potential ability of the patient.

Decentering from the loss of function and holding the whole person of view are important and will be examined further in this chapter. If the family relationship was positive before the disability and if the patient is cognitively intact, then the focus can be directed toward the relationship’s strengths as well as toward the patient’s and family’s individual cognitive and emotional strengths. In the initial acute stage of adjustment, crisis intervention may help the family use its strengths and at the same time deal with the situation at hand.

To adequately grapple with the crisis at hand, in the context of shortened hospital stays, the therapist can encourage the family to do the following:

• 1.
  

  Be encouraged to focus on (rather than deny) the crisis caused by the disability; acknowledge and explore the situation to stimulate emotion-focused and problem-focused problem solving; identify and work through doubts of adequacy, guilt, and self-blame; identify and honor the grief process; gently notice and hold in awareness any anticipatory worry; be offered instruction in mindfulness skills to assist in building skills of stress-hardiness, resilience, and self-compassion and basic information and education regarding the crisis situation; and be helped to create a bridge to resources in the hospital and in the community for support and to see their own family and community as potential resources. ^,

  
  
• 2.
  

  Be helped to remember how they have dealt successfully with crises in the past and to implement some of the same strategies in the present situation.

Work with the family as a unit during crisis to help strengthen the family and facilitate more positive attitudes toward the patient. These attitudes by the family will improve the patient’s attitudes or feelings toward the injury and hospitalization. ^{, ,} Encouraging family-unit functioning in this situation can decrease the amount of regression displayed by the patient. If the family is encouraged to function without the patient, however, more damage than good may be done. ^,