Storytelling and Health Care: Applied Storytelling with Stroke Survivors

by Andre Heuer

The sun filtered through the blinds spilling over my father. Tears glistened on his cheeks. His voice shook as he spoke, "I don't understand. What is happening to me? I used to remember everything and now I can't even take care of myself."

His speech was slightly slurred and his movements slow. I thought it was because he was depressed. I sat helpless, not knowing what to say. I tried to find something to say, anything.

I hesitantly spoke, "I don't know, Dad. I just don't know. It will be okay." I knew things were not going to be okay but I had to say something.

My father was suffering from senility dementia. Each day he remembered less and I was waiting for the day that he wouldn't remember me. In the last two years of his life he began to experience heart problems and at the end of his life a stroke. It wasn't until later that I realized that the slurred speech and his slow shuffling walk were signs of a stroke and that he had probably suffered several before his death. What is strange is that in spite of my work with those in health crisis and who were dying I did not recognize the symptoms of stroke in my own father. It was only later that I understood the effects of several minor strokes on his behavior and physical well being, and how the strokes most likely contributed to his death.

An Invitation and Overview

In the fall of 2000 I received an invitation to conduct two days of training at St. John's Hospital System in Springfield, Missouri for health care professionals in the use of storytelling with stroke survivors. I was excited by the possibility. My experience with my father and other stroke victims convinced me that storytelling used in conjunction with other therapeutic modalities would be helpful in the healing and rehabilitative process. In this article we investigate the nature of a stroke, the physical and psychological effects of a stroke on a person, the skills necessary to function as a storytelling practitioner, and the benefits of using storytelling in combination with other therapeutic modalities.

What is a Stroke?

Strokes occur within the left or right hemisphere of the brain, the cerebellum, or the brain stem. During a stroke the blood supply to a part of the brain is disrupted. As the blood to the brain is disrupted, oxygen cannot reach brain cells and this can paralyze or kill them. This affects body functions that are controlled by that part of the brain, leading to both temporary and permanent disabilities.

The damage most associated with stroke is partial paralysis and aphasia - an inability to understand or use words. A stroke can also affect cognitive activities such as perception, memory, and decision-making. A stroke survivor can experience gaps in both long-term and short-term memory and a loss of personal identity and social skills. As the survivor deals with the physical and emotional impairments of their stroke, the relationships with family and friends suffer. The stroke survivor can feel that their world has fallen apart. The resulting grief is often overwhelming.

Various types of therapy can help the person to regain some lost functions by enabling other parts of the brain to take over. There is often the need for emotional support in the form of support groups, grief counseling, and possibly psychotherapy. Determining the best course of therapy is complicated and varies depending on the extent of the damage caused by the stroke, the personality of the survivor, and their support systems including family and friends. Providing the proper therapy requires a diverse team of health professionals comprised of physicians, neuropsychologists, social workers, nurses, gerontologists, chap-lains, and speech, physical, and occupational therapists.

Why Storytelling?

The initial interest in storytelling arose from Valerie Griffin, coordinator of Older Adult Services and Phillip Mothersead, Ph.D., and Michael Whetstone, Ph.D., staff neuro-psychologist for the Stroke Center at St. John's Medical System. They recognized a need to provide additional follow-up for stroke survivors after leaving the hospital. They felt that the use of storytelling within a group process would provide support, create a sense of community and belonging, and help the survivor to integrate their experience in a meaningful way. Also, storytelling was seen as a possible therapeutic modality and motivational tool to help those survivors who suffered aphasia from their stroke.

The Training

The plan was to use the training session to:

  • train healthcare workers in the art and nature of storytelling.
  • investigate and explore the application of storytelling within the therapeutic and recovery process.
  • evaluate the role of storytelling within the various healthcare disciplines.
  • develop a study to see if the use of storytelling within the Stroke Center program positively affected the quality of life of the survivors.

 On a cold Friday morning, forty health care professionals and volunteers entered the two-day training session at St. John's. The group included neuropsychologists, social workers, nurses, gerontologists, chaplains, educators, physical and speech therapists, body workers, storykeepers, and storytellers. Though the workshop was originally designed for those who worked with stroke survivors, also attending were health care professionals and volunteers who worked with brain cancer, brain injury, Alzheimer's patients, and in palliative and hospice care. The diversity of caregivers presented a unique challenge. Each professional group had their own discipline, priorities, attitudes about the nature of healing, and thoughts on ways to meet a patient's needs.

During the two days there were four sessions focusing on the nature and process of storytelling and the use of storytelling with survivors. Each session consisted of:

  • an activity that demonstrated an aspect of storytelling.
  • theoretical discussion of the activity from a therapeutic perspective.
  • breaking into small groups based on discipline (nurses, psychologists, chaplains, etc…) to explore, to integrate, and to adapt the content to the caregiver's particular discipline.
  • a discussion of the connection of the story activity to other treatment modalities such as art therapy, reminiscence therapy, psychotherapy, physical therapy, etc..
  • an inter-disciplinary discussion of ideas and strategies based on the theories and activities presented in the session.

 In addition to activities focused on storytelling participants learned to use other techniques such as physical, reminiscence, and art activities in conjunction with storytelling.

Giving Voice to Experience

Most people who experience a stroke or other traumatic disease or injury, experience a profound loss. There is a need to deal with the emotional turmoil. Many find that it is helpful to share their experience with others. There is a cathartic effect in sharing, especially with those with similar experiences. As noted earlier, strokes can affect the way one perceives and experiences one's self. The sharing of experiences and creating story helps the survivor to rediscover and gain a sense of self, and the opportunity to deal with the emotional trauma. However, to accomplish this end there is a need to share more than the painful experiences and stories.

The mere repeating of the painful elements of the experience often has a negative effect. Dwelling upon the painful circumstances tends to reinforce the damaging aspects of the experience and psychologically sabotages the healing and recovery process. A skillful practitioner not only establishes the conditions for the survivor to remember and share their painful experiences but also to remember the experiences that are meaningful and pleasurable in the person's life. These meaningful and pleasurable memories, experiences, and stories help to motivate the person and to promote healing. It is important to remember that the revisiting of painful memories and periodically experiencing feelings of loss throughout the process of healing is normal. But what becomes problematic is the excessive dwelling on a painful experience.

The survivor's remembering and sharing an experience is only the first step in the therapeutic use of storytelling. The structuring of the experience into story through telling or writing is a necessary condition of using storytelling as a therapeutic tool. It is the structuring and giving shape to the story that helps the individual to integrate the experience and to gain a new perspective. The shaping and telling of the story enables the individual to take ownership of their experience while helping to create a healthy detachment.

Creating Cohesiveness

The attendees hear a story of a young boy listening to the stories of his parents and neighbors. It is a hot summer night and it is 1957. The stories of the War, the Depression, and a little gossip fill the room and prove irresistible to the young boy. He is the only child in the room and he has crawled into his mother's lap. He smells the beer and breathes in his mother's perfume. He feels content being with the adults and he is filled with wonder as he listens to the stories.

The attendees are drawn into the story. They share their experiences and the room fills with memories and stories. A discussion ensues about the role of storytelling, of remembering, and most of all about belonging.

The attendees participated in and learned about storytelling activities that help to create a sense of trust, cohesiveness, and community, while encouraging individuals to share their personal story. Participants tossed a ball of yarn back and forth between each other. Whoever caught the ball of yarn would share a personal story. They in turn would hold onto the yarn and toss the ball of yarn to another person. As the yarn passed back and forth a colorful web symbolizing the participant's connectedness was created. At the end of the activity, each member of the group cut a long piece of the yarn as a reminder of their experience together. Some voice opposition. They like their sense of connectedness. They are told to fold the yarn into a small bundle and that this bundle is now a symbol of their belonging and of the stories they have shared. The yarn is cut and the folded carefully. At the end of the day, no one leaves his or her yarn behind. During the session, the participants experienced three variations of this activity.

In this session, the health care professionals identified several thera-peutic benefits of the activities. They felt that stroke survivors could experience a sense of belonging and support. The passing of the yarn ball, the holding onto the yarn, and the cutting of the yarn also provided a simple but doable physical activity. The passing of the yarn also created a situation that encouraged interpersonal cooperation in order to accomplish the task. Finally, it gave the stroke survivors a means to share their story and to receive empathy in a supportive and encouraging environment.

Structuring a Story to Tell

In the second session, we focused on techniques of structuring personal experience into story. As previously mentioned, this structuring of experience helps a person to take ownership of their experience while helping to create a healthy detachment. This session began with the evoking of personal memory and experience. Participants chose the three most important facts of their experience and wrote a sentence for each fact. Several sentences are added to each fact until a basic outline of a story is written. The participants understood that this writing was only a framework for a story. This story was used as the basis for the second activity of listening and telling the story. (An alternative activity was suggested if the stroke survivor is not able to write or speak. In this alternative a gesture is made for each fact and the person can either orally tell the story or act it out through movement.)

At the end of the session a social worker raised his concerns that the structure of the exercise actually may structure the way a person experiences and perceives. A neuropsychologist agreed and a discussion followed about the ethics of using story and in what ways the stroke survivor is affected by using a method that structures thought.

The second activity of listening and telling used the story outlines created by the participants. Two individuals chose to work together. They decided who would be the teller and who would be the listener or the witness to the story. The person selected as the teller shared the story created in the first activity. The teller was encouraged to sparingly use the outline of the story and to tell the story as much from memory as possible. Once the teller ended their story, the listener repeated the story twice. The first time the listener shared the story they told it as near as possible to the original. The second time the listener told the story, they told it as if it were their own by creatively adding their own personal details while keeping to the basic structure of the original story. (If the story was acted out rather than spoken, the listener was to act out the story following the directions as previously given.)

The health care professionals during this session were reminded that the storytelling practitioner must be attentive to the particular abilities of each person. Some individuals, because of their limitations, may need to work with a trained volunteer. The most advantageous situation of course is when survivors work together. It is also important, at times, to give some guidance to the matching process so that there will be a sense of satisfaction for both participants when the activity is completed.

When a volunteer is needed they are to walk slowly through this activity, giving encouragement along the way. The volunteer is to both listen and repeat the story back and is also to tell and have their story repeated back. This activity can be split into two different sessions if needed. It can be a very exhausting process for a person experiencing aphasia.

The participants in the training session felt that the activities utilized in the activity of structuring the story worked on multiple levels, developing cognitive skills including organizational, decision-making, and verbal skills. They felt that the activity of listening and telling supported the development of mental retention, verbal skills, and inter-personal skills. The listening and telling activity was seen as psychologically powerful in that it meets the desire of a person to express who they are and to be heard. This is particularly important to a stroke survivor who often feels lost in the world and especially within the hurriedness of a medical system. The reflection of the story back to the person also helps to establish a sense of identity by constructing memories and experience into a coherent and substantial concrete form in both the written and spoken word. In response to the listening and telling activity a participant commented, "He has made connections and heard truths in my story that I had not uncovered." In the discussion that followed the participants felt that the process of hearing one's story enriched by another's experience gives the opportunity to gain insight into one's own life. It was seen as a non-threatening means of providing insight that can be liberating to a person and as a strategy for overcoming defensiveness and helping a survivor to see that another person can identify and be empathetic with their experience.

Evoking a Story

To use storytelling effectively within the therapeutic process, the practitioner must be able to draw out the personal experiences and memories of the survivor in order for it to be formed into story. The skill of drawing out memories, experiences, and stories from a person is more than creating a favorable or a safe situation to tell a story. The principles used in this session are found in the work and theory of Milton Erickson, Augusto Boal, and reminiscence therapy.

In the initial story evoking activity the participants learned to draw out stories by using objects such as keys, pictures, kitchen utensils, tools, toys etc., songs and music, scents, textured items such as fur, sandpaper, spongers, dirt, peels, or using paints to create paint blotches. For example; an object was placed in the center of a circle. Each person was given a turn to share a memory or story that was evoked by the object. During the evoking activity keys reminded participants of a time that they lost their keys, a mixing spoon reminded someone of their mother baking in the kitchen, a lit cigarette lighter reminded people of being at a rock concert.

A second activity used small containers in which a scent was added. The containers were numbered and after individuals shared their memories and stories, the scent was identified. Once the memories were drawn out, the participants took turns structuring and sharing their story. The smell of one container caused a woman to smile. "The peanut butter sandwiches for school lunches." Another smells the contents and quickly pulls it away. "Cleaning my grandmother's house on Saturday afternoon."

And the memories poured out. The participants, without being asked, attested to the power of smells to evoke memories and story. One person cautioned about using scents with people with allergies. Those of us with allergies agreed. The participants were encouraged to investigate the principles of reminiscence therapy as a means of evoking story.

Participants also saw how the telling of story evokes story. This was demonstrated throughout the training sessions. In storytelling, the teller gives enough of the details to spark the imagination of the listener allowing the listener to fill in the details. A writer might write: "The long tattered black velvet hat looked as if it were about to slide off his shiny bald head onto the ground." A teller might simply say, "The tattered black hat looked as if it were about to slide off his head." Since the storytelling practitioner is interested in sparking the imagination and memory, a sparseness of details can aid in this process. The type of story used to evoke story is incidental to the process. Fairy, traditional, ethnic or personal tales all have the power to draw story from the listener.

The final activity was an adaptation of an exercise developed by Augusto Boal for his Theatre of the Oppressed. The participants formed a group of 6-8 members. Using one of the previously mentioned activities, a story was evoked. Each group member was asked to create a gesture that conveyed the story. No words were to be spoken. Each member of the group was to take a turn and show the gesture they created. The other group members took turns interpreting the person's gesture and telling the story they thought was being told by this gesture. When group members were done sharing their interpretations the person shared the real story behind their gesture.

Laughter and sometimes frustration was expressed at learning how much they had misinterpreted the gestures. Those present whose interpretation was a close match, felt a sense of pride. What all the participants enjoyed was the various stories that were evoked by the gesture whether the story was accurate or not. When the group was done, the group discussed the exercise, focusing on how we interpret or sometimes misinterpret reality.

This session stirred considerable talk within the groups representing various disciplines and also during the interdisciplinary discussion at the end of the session. The ability to evoke story was seen as pivotal to the process of using story with stroke survivors. The participants felt that the activities supported the development of inter-personal and intra-personal awareness and relational skills. The sharing of memories and experience created a sense of belonging and support. The memories evoked and reinforced by the telling encouraged a sense of personal identity. Furthermore, the activity of interpreting the gesture of a group member challenged the participants, in their own practice to work at clearly seeing their patients, being careful not to misinterpret, and highlighted the need to be careful of not making assumptions. The act of gesturing was also seen as a small step in encouraging physical movement. The questions raised by this exercise led naturally into the final session that focused on the ethical issues that arise while working with storytelling and personal narrative.

Ethics of Using Personal Story

At the beginning of the fourth session dyads were formed and individuals sat directly across from each other. Between them lay a sheet of 14"x17" plain paper, crayons, and colored markers. They were asked to think of a story that had been evoked earlier. They were cautioned not to talk during the activity, to share the paper between them, and to draw a picture of their story on the paper. The activity was repeated twice more with a new sheet of paper each time, but with four, five or six individuals working on the same sheet. When they finished the activity they discussed their feelings as they encountered each other while drawing their picture. One group experienced a major misunderstanding of intent. One person just could not understand how her partner could use up so much of the paper and not make sure that they were equally sharing it. Others expressed the same feeling and that they just stayed on his or her half of the page and expected the other person to do the same. Others expressed that they didn't share equally because they wanted the other to join them and to create a picture story together. The sharing of their experience led into a discussion about boundaries and limits, the assumptions we make about how things are to be done, and the negotiations that are necessary as we meet and interact with others.

As the discussion progressed, issues of privacy arose. The participants felt that the stories told needed to be treated as confidential and that the stories could not be shared with others without the permission of the stroke survivor. The participants also agreed that when the activities were used in a group process that it would be important to remind members not to tell the stories of others with non-group members.

A second important issue was that of transparency. How much of our own story can we reveal? The discussion centered on the need to tell story as a means of modeling and also of evoking story. The participants felt as long as the story enhances and enables the stroke survivor to tell their story it is an effective tool but as soon as it removes the focus from the client or patient it is ineffective and should not be used.

What needs to be noted is that throughout the two days, many ethical issues were raised and discussed. Also explored was the need to respect the power of story to shape thought and perception and to be careful not to impose one's own story on another. Further activities, similar to the one found in the second session regarding structuring stories around three facts, could possibly influence the way that a person both perceives and experiences reality. The ethical questions discussed pointed to the most important issue of all. Stroke survivors must be included and seen as partners in their treatment and recovery plans. All considerations are secondary to the full and complete participation of the survivor and the right of the survivor to be informed of the purpose and hoped for outcome of all therapies used, including the use of storytelling.

The discussion ended with it being noted that the use of art could be an important means of having the stroke survivor express his or her experiences and story. The participants also saw the value of this drawing activity as a starting point of a discussion on the issues of personal space and inter-personal relations as the stroke survivor renegotiates his or her relationship with family, friends, and health care workers.

Conclusion

As the participants gathered at the end of the two days of training, several benefits of storytelling were identified.

  • creates a sense of belonging and support.
  •  
  • enables the patient to integrate their experience in a meaningful way.
  •  
  • provides a means to deal with loss and grief.
  •  
  • improves cognitive skills including memory retention, decision-making, and organizational skills.
  •  
  • supports patients in relearning verbal and written skills.
  •  
  • develops inter-personal and intra-personal skills.
  •  
  • improves perceptional and interpretative skills.
  •  
  • provides a means of re-establishing personal identity.
  •  

The training of this group of health care professionals and volunteers was just the beginning. The activities learned are being adapted and made part of a follow-up program for stroke survivors. Ways of measuring the difference between groups that use the storytelling activities and those that do not are now in the process of being developed. The primary focus will initially be on quality life issues. It is hoped that eventually that other studies will investigate the effects of storytelling with stroke survivors who are suffering from aphasia.

In conclusion even though storytelling is an ancient art, we are only at the beginning of discovering the ways story can be used in the healing and recovery process. This article is simply a description of one way of training health care professionals in the use of storytelling. There is a need to continue this process and to conduct the studies to see if storytelling is effective, what methods of storytelling are effective, and for what patients and situations storytelling is most beneficial.

Dr. Andre B. Heuer, LICSW, tells and evokes stories. He is a teller and a writer of story. He has taught and used storytelling within health care, corrections, a center for the book arts, hospice, justice circles, ministry, and social services. He is the co-founder of two regular venues, A Company of Tellers and Experiments in Story. He has presented workshops on the use of story for the Family Therapy Network Conference in Washington D.C., the Northlands Storytelling Network Conference, and the Minnesota Hospice Organization Conference. He is a founder and on the board of the Northstar Storytelling League, a board member of the Healing Story Alliance of the National Storytelling Network. His doctoral work in gender studies focused significant attention on the use of personal narrative in social research.

Storytelling and Health Care: Applied Storytelling with Stroke Survivors appeared in the Healing Story Alliance Journal, Diving in the Moon, Trust the Power of Story, Issue 2, Summer 2001. See www.healingstory.org