Thinking Through Every Step: How People With Spinal Cord Injuries Relearn to Walk

Sample and Recruitment

Participants were recruited through staff at a rehabilitation research center in which ongoing therapeutic interventions with physical therapists were occurring. Staff screened those who met the only study criterion, which was being an active participant in LT (participating in our study was not a requirement for receiving LT therapy, however). The participants were selected based on their willingness to undergo three interviews after their therapy sessions. Given that we were dependent on therapists for recruitment, we could not use theoretical sampling. We obtained informed consent for participation in the study prior to beginning the first interview.

Participants

We interviewed 4 men and 1 woman. All participants were White, ranging in age from 45 to 62. Participants were injured as a result of hazardous working conditions, motor vehicle accidents, or bicycle accidents. Time since the injury varied between 1 and 4 years. All injuries were classified as iSCI injuries. All participants were able to perform their activities of daily living to some degree, and 3 had recently acquired car hand controls for driving. An Iraq war veteran, a construction worker, a competitive athlete, and 2 retired police officers were represented. ² All 5 traveled from out of town to participate in the training. Two participants arrived at the intervention site in a wheelchair and were using walkers by the end of the 12 weeks; 2 others used wheelchairs throughout the therapy; 1 person rarely used an assistive device. Participants complained of secondary complications of iSCI, such as back pain, lack of bladder control, nerve damage, muscle spasms, blood clots, and lack of sleep. Their goals for the intervention addressed symptomatic (lessening lower back pain), functional (becoming more independent in bathing, showering, and dressing), and expansive (returning to a life of skiing or cross-country travel) concerns.

Data Collection

Each interview lasted approximately 1 hour. Interviews were audio recorded and transcribed verbatim. All identifying information was removed in transcription. Pseudonyms are used in this article to protect the participants’ identities. We created three distinct interview guides (see Appendix A). During the first interview, participants were asked to talk about their accident, how their life had changed since the event (life activities, job, family, sense of self, social and physical obstacles), goals for therapy, and the importance of these goals to their life at home. The second interview, conducted at the midpoint of their training, was focused on their first day of training, the meaning of the changes in their body, how these changes affected their self-concept, and whether the training so far had met their initial expectations.

The final interview took place on the last day of training. Similar questions from the second interview guide were used, in addition to questions asking participants to reflect on the value of LT to their life, their progress in terms of easier and more difficult aspects of the training, and their assessment of their original goals. The interview questions that were directly rooted in our theoretical framework and provide the scaffolding of this article include: What changes have you seen in your body since our last interview? What do these changes mean to you in your daily life?

Data Analysis

A multidisciplinary team of researchers, comprised of two sociologists, a rehabilitation scientist, an occupational therapist, and a medical anthropologist analyzed the interview data. ³ Two members of the research team had personal connections to disability: One had muscular dystrophy and another was a cancer survivor. These different perspectives allowed for investigators with different viewpoints to interpret the same data; it is what Denzin (1984) called “investigator triangulation.” Forgoing a single perspective and integrating social psychology, anthropology, and functional outcomes culminated in a richer analysis. Interviewers wrote memos detailing their subjective impressions of the participant’s verbal and nonverbal cues immediately after each interview. ⁴ Memos also served as the researchers’ notes for perceived changes between the first, second, and third interviews. This comparison laid the groundwork for developing theoretical connections. We used the NVivo qualitative software package (QSR International, 2008) to code and organize the data.

We analyzed the data using a loose adaptation of constructivist grounded theory strategies (Charmaz, 2006). We utilized familiar grounded theory techniques such as coding, memoing, and comparative methods to ensure rigor (Charmaz, 2006). Our analysis proceeded in three phases. In the initial phase, we coded line by line, giving codes tentative labels that closely matched the participants’ wording; e.g., “getting back [what I lost]” and “my entire life changed.” At this point, we began to develop a loose coding framework, and initial codes were checked using the constant comparative process (Glaser & Strauss, 1967) to compare data across participants. When a participant completed three interviews, or a case, we compared data in earlier and later interviews of the same individuals.

Second, we used focused coding to sift through the most significant or frequent initial codes to sort, synthesize, integrate, and organize our data. In this phase we continued the process of creating abstract codes while also making decisions about categorization. Codes with similar themes were housed under more abstract codes, such as “threats to self” for any talk relating to changed identity and roles (both positive and negative). Finally, in the theoretical phase of coding, we organized codes according to a coherent, analytic story, loosely structured around the sections of this article. Although we used these three steps to guide our general coding road map, we admit that the process did not occur in linear, distinct phases; rather, “the picture slowly emerged as a patchwork mosaic” (Dey, 2003, p. 86).

The Meaning of Movement: Two Stories of Progress

Each participant undergoing LT constructed his or her progress differently. Here we describe two participants’ accounts of their changing bodies from the beginning to the end of their therapy (Howson, 2004; Merleau-Ponty, 1958). We chose these 2 participants because of their different reports of progress: Richard believed that he saw considerable changes in his own body, whereas Lucas characterized his bodily changes as unremarkable. Because participants had very little in common other than a life-changing event that affected their spinal cord, their narratives do not lend themselves to comparison. Instead, we use this descriptive account of two very different experiences in LT to illustrate the individuality and uniqueness that characterized recovery narratives during the training.

Richard, a man in his early 60s, thought he would never walk again after his injury 4 years previously. Through weight training, he developed the use of his arms and hands, and partial use of his legs. He said that his biggest life change was ending his cross-country road trips on a motorcycle. His goal for therapy was “walking normally”—something he viewed as different from “walking fast.” Progress for him materialized in three areas: balance, endurance, and what he called “mechanical walking.” By the second interview, he noted dramatic improvements in all three areas, although he still experienced “toe hits” on the treadmill, which caused him great frustration because he wanted to walk smoothly. These functional abilities translated into meaningful activities in the community. He stated that it was important for him to be able to walk around the mall without feeling tired, and that increased endurance helped him achieve this. By the final interview, he reported that he was able to walk overground from his hotel room to the therapy session without resting. He stated, “Whatever I have to do, I can do it and not get tired anymore; it is a lot like being normal.” This accomplishment was monumental for him in that he could walk without feeling “dead tired,” as he did at the beginning of the intervention.

Lucas, a man in his mid-30s who had lived with the injury for a year, remarked that his biggest life change was the limitation of his interactions with the community. For instance, he could not visit a beach bar with his friends, because he could not wheel on the sand. He set his goals very high at the beginning of the training; he wanted to get on his feet and walk out of the training session by the end. He used phrases like “getting back to normal” and “walking normally,” implying that he saw the intervention as a way to manage the disruption in his life that he experienced by not being able to walk.

By the second interview, he reported that he did not see “that big of an improvement” in his ability to walk, and that he was still coping “with the same crap.” Nevertheless, he said wheelchair transfers and wheeling uphill—activities requiring upper-body strength—seemed easier at that point in the intervention. He reported that this improvement gave him the ability to stand up and hold his balance while using a disability safety bar in the shower. By the third interview, he lamented that he saw no drastic changes in his body (e.g., walking around without an assistive device), but said that the training made it easier for him to move around to complete his activities of daily living. Because of these changes, he made plans to start weight lifting and working out on an exercise bike. He said that the therapy enabled him to get up on his knees and move his body without a struggle, which had a positive impact on his getting a good night’s sleep.

We gain several insights into the recovering self after iSCI through Richard’s and Lucas’ accounts of their changing bodies over the course of 12 weeks in LT. Although they are not long-term-recovery narratives, their stories are snapshots of daily frustrations and accomplishments, illustrating how the management of progress can fluctuate during a short period of time. The men internalized these changes in different ways. Richard believed that his body changed such that the therapy was a major turning point in his life. He remarked,

During the past month, I see the end of the tunnel. I see the light there. It is almost done and [I am] reflecting on where I have come to when I first came here to where I am at now.

Because of the changes he witnessed in his body—increased endurance most of all—he ended the intervention on an expansive note: “To get me back into life, I will try doing the things I used to do and enjoy doing.” The intervention made a difference in Richard’s self-concept by expanding possibilities for returning to activities that he previously enjoyed.

Lucas reported more mundane changes that did not appear to greatly alter his perspective on his disability or his future. By claiming that the intervention helped him cope with “the little things in life,” he saw the therapy as more of a warm-up for real recovery than a major turning point. At the beginning, he defined progress as a drastic improvement in walking ability to do the things he wanted to do with his wife, child, or friends. At the end of the intervention, he admitted that he had to lower his expectations for recovery and that this particular intervention was a way to get his body in motion without miraculous results. For him the therapy was not without benefits; LT just delivered them more slowly than he expected. Lucas’ story shows how expectations for progress are constantly negotiated when hopes are initially set very high. Although he witnessed positive outcomes in ease of wheelchair use and ability to transfer his body, these were not up to his standards in how he defined progress. He wanted to play with his child on the playground or have a beer with friends on the beach. Like Richard, Lucas did not want to simply relearn how to walk; he wanted to return to activities that he enjoyed doing before the injury.

Without the certainty of returning to a life of meaningful activities, at minimum LT represented a milestone for returning participants to the sensation—if not the actual promise—of walking. For 3 days a week, participants got up and walked. Whether this routine translated into actual benefits in walking outside the training room varied. Richard’s and Lucas’ differences in age, severity of injury, starting points, and time spent adapting to a new physical habitus (Thibodaux, 2005) shaped their differing attitudes toward their progress in LT. Thus, progress is not a linear concept for persons with iSCI. It is more useful to define progress by the everyday fits and starts, the so-called good days and bad days of daily life (Charmaz, 1991; Laskiwski & Morse, 1993). Nonetheless, the belief that things are progressing, that the body is changing, and that the diagnosis for iSCI is not forever fixed or permanent, are powerful arbitrators between hope and despair (Warren & Manderson, 2008). In this way, the LT intervention is symbolic of a launch pad out of the privacy of the hospital bed and into the public sphere, where potentially life can go on as normal.

Managing the Uncertainty of Incomplete Spinal Cord Injury

Researchers have documented that experiencing uncertainty is a persistent characteristic of persons with illness and disability (Mishel, 1988, 1999). People who are ill worry about remission, recurrence, setbacks, exacerbations, and destabilization of health, which prevents them from planning day-to-day events and setting long-term goals. The physiology of iSCI shapes individuals’ attitudes toward long-term recovery. Depending on the location of the injury on the spinal cord, neurological impairments throughout the body can vary from person to person (Palmer, Kriegsman, & Palmer, 2000). The highly personalized nature of the injury is one reason the iSCI recovery and reintegration process does not always follow an orderly pattern (Angel et al., 2009; Crewe & Zola, 1983).

Gwen, a woman in her mid-40s who had been living with the injury for 6 months, described the “incomplete” experience:

Being incomplete, some people call it both a blessing and a curse. It’s a blessing in the fact that it’s not like “what you see is what you get,” which means being paralyzed from the upper chest down. But the curse is like you don’t know when it’s going to happen, how much you’re going to get back. Some people have my injury and they regain almost everything. And in the [rehabilitation hospital], I saw people that had been injured for longer than me, but they had less return.

Participants realized that uncertainty was a fact of life for this injury, yet felt constrained by their inability to plan for the future. They negotiated the uncertainty of the recovery process in various ways. Some wanted their former lives back and viewed the intervention as their “ticket” to returning to this former life. Others set small-scale goals and reevaluated their priorities in light of setbacks in their therapy experience. All 5 participants dreaded the end of their 12 weeks, expressing sadness that they could not continue. Therapy seemed to give them hope for a more certain future, offering possibilities but not promises.

Spinal cord injuries can present what Morse (1997, p. 28) called “threats to the integrity of the self,” which means that an injury disrupts a person’s life so violently that his or her core identity is compromised or altered in some essential way. Finding comfort in the impermanence of the injury is one way of preserving the self and maintaining a sense of control over the uncontrollable. Some researchers have documented ways patients manage uncertainty to eliminate it (Selder, 1989), whereas others have proposed that patients integrate the feeling of uncertainty into their everyday lives (Mishel, 1990). Our analysis lends support to the latter view, in which people with iSCI shift their values to accommodate new perspectives on life, while their core identities remain intact.

For instance, Earl, a man in his late 40s who had been living with his injury for 6 months, offered the view that the uncertainty of iSCI was not something to be feared, but embraced for its surprises: “I’m glad I got what I got. Because the doctors always told me, ‘You don’t know what will come back. It’s what you want to come back.’ That’s the attitude that I’ve had, and that’s helped me out tremendously.” In a similar vein, the experience of LT helped Richard integrate uncertainty into his life by structuring time so he could make decisions with a clearer head and sharper vision about future possibilities. As for his plans after LT, he said during his third interview,

I might even go back to teach. . . . I will cross that bridge when I come to it. I think I am closer to crossing that bridge now than before I got here. I think emotionally I can get back into the flow of society, not just physically, but mentally, whether it is to work or to volunteer my time in the community, or writing. I think I will be more ready to make a decision as to which direction I want to go when I leave here.

Richard drew on the imagery of a bridge to illustrate what Becker (1997) called “living in limbo,” or living in between life chapters. By metaphorically speaking of crossing bridges, or holding off on decisions until after LT, Richard engaged in a biographical reconstruction that was not yet complete. Characterized in this way, uncertainty is a transitory state of being in the world; it is the act of being “suspended in social space” (Becker, p. 119) in which materials are gathered and ideas are considered, yet no permanent structures or edifices are built.

Another strategy participants used to combat uncertainty was to apply experiential knowledge to their new, unfamiliar situation. For example, Gwen saw the immutable aspects of recovery as incompatible with her previous embodied self. During each of the three interviews she dwelled on the uncertain future, yet she also deployed strategies for combating this uncertainty. Attempting to reconcile her training as an athlete with her injury, she described recovery as “fits and starts” instead of a linear progression:

I’m used to training as an athlete, [where you] put in a lot of hard work and you get a positive result. And with the spinal cord injury, it’s not like that. It’s almost like you have to wait for the muscles to be ready.

Although her athletic frame of reference was valuable, it was ultimately her Buddhist faith that provided Gwen with a positive certainty about her recovery prospects. Practicing mindfulness prepared her for the mental stamina of “thinking all the time” about her body. She applied this practice to her recovery:

As a Buddhist you’re supposed to practice mindfulness . . . and being injured like this, you have to be mindful about everything. You have to rethink. I can remember back to when I was like, “Do I have the strength to turn on the electric toothbrush?” seated in my wheelchair. And it was hard, and I could get it maybe three out of ten times. . . . You have to think through every step. . . . Can I actually just brush my teeth and not worry so much about what are my legs doing?

Gwen was certain that she would walk again; she just did not know when that day would come. This anxiety over unknown recovery caused Gwen to ask, “How much will I get back and when? Will I max out [stop healing]? How will I know I have reached this point?” She drew on her experiential knowledge as a Buddhist and former athlete to manage her uncertainty as she encountered her new and unfamiliar reality, allowing her to construct a form of practice that was familiar (Mishel, 1999; Selder, 1989).

Navigating a Disabled Identity: Physical and Moral Transformations of the Self

In this study we found that participants experienced more than physical outcomes as they progressed through LT. They also processed new perceptions and concepts of self with the aid of comparisons (Charmaz, 1999; Noam, 1993). Participants made sense of their disability in four ways: comparing past and present selves, comparing themselves to others, ranking assistive devices, and assessing their own levels of independence. In other words, participants judged their own progress against other people with similar disabilities and judged their worth according to their perceived independence before the injury. Classifying disability and assistive devices and negotiating help and independence were ways that physical transformation in therapy corresponded to moral transformation of the self. For people with iSCI undergoing LT in particular, their interpretations of therapy assumed a moral dimension as they reconciled old selves to launch new identities.

Limitations

Our findings should be viewed in light of their limitations, the most obvious of which is the small sample size. The participants were unique in that they were highly motivated, persistent, and more than willing to commit to a physically demanding 12-week time period. Conclusions could have been different if we had focused on patients who were unable to commit to these demands (such as those who had dropped out of the intervention or those who rejected the idea of rehabilitation altogether). Different conclusions could also have been reached if we had interviewed people with spinal cord injuries who were not newly disabled, particularly those who could offer a longitudinal view on the positive changes disability had on their lives. Because no data were collected beyond the third interview, we cannot make conclusions about the effects on patients’ lives weeks, months, or years after completion of the therapeutic intervention. Follow-up research is needed to determine if our findings still accurately reflect people’s experiences years after the LT program.

Implications for Clinical Practice

The study has practical implications for rehabilitation programs in that we offer data that bolster the need to situate changes within the therapy room for contexts outside of it. If a patient says he or she feels, for example, more tone in his or her feet, this physical experience has a social component that impacts the individual at home or in the community. The tone might mean difficulty using public transportation, sleeping, or doing housework. Patients talk about their bodies cohered to their surroundings, not segregated from them. Hence, progress toward recovery becomes meaningful insofar as people can do the things that are important to them in their everyday lives. Even focusing on a relatively narrow aspect of spinal cord injury rehabilitation—gait—has larger implications beyond the purely functional aspects of walking. Relearning how to walk is linked to forming closer ties with friends, spending less time on personal care, and feeling safer in public.

The question for any new medical advancement in alleviating iSCI should not be, “Does this new therapy restore function for people with spinal cord injury?” The question should be, “How do patients interpret the results from these new therapies?” Capturing the process of creating meaning from physical changes can bridge the gap between the clinician’s measured functional performance and the social meaning of that performance. These findings, however exploratory, can be used to improve patient-centered rehabilitation research and program development.