By © Mary Louise Chown, BA, BEd, BFA
Aphasia takes your words away…. and what do words do? Well, they give you a chance to transmit your knowledge, express your feelings, and share your heritage and history, so other people will learn from you. Language does much more for us than meeting our simple needs…this is what people lose when they acquire aphasia. How can a young father with aphasia teach his 2 year old about life? We teach one another about life thru our stories and experiences, right?
Allison Baird, Speech-Language Pathologist
When I’m with normal people I feel stupid, I don’t talk. Here I feel funny and good. You feel equal here. In other groups you don’t talk.
–Velma, group participant
A little less than a year ago, storytellers in Winnipeg were invited to work with a Speech-Language Pathologist who was running a series of groups for people living with communication disorders. This is not a research project. Rather, we are in the midst of an adventure and are finding our way as we go. It all began, curiously enough, with a sharing of stories. Allison Baird, a Speech-Language Pathologist working in Winnipeg in private practice, had been running group sessions for people with aphasia for a number of years. Here is how she described aphasia:
Allison: Almost one third of those people who have experienced a brain injury will experience aphasia as a consequence of the injury. Aphasia is a disruptive, often devastating language disorder that is characterized by reduced ability or complete inability to send or receive messages with words whether spoken, gestured or written. People with aphasia know what they want to say but cannot find the words to say it. The cardinal feature of aphasia is experienced as word finding problems.
People with aphasia receive treatment that is effective; however recovery from aphasia is lifelong and rarely complete. People with aphasia are often discharged too early from speech therapy because their progress is so slow it seems their recovery has ‘plateaued’ and they are left with a chronic disabling condition, which discounts then from family and friends. Participation in life is severely restricted when you are unable to communicate effectively. This is when they come to see Allison. ” I don’t believe in plateaus,” she told me.
Allison hoped that the experience being in a group might encourage participants to speak about their lives and have meaningful conversations of the sort that occur naturally in real life. She planned her ninety- minute groups very carefully, including word association games that she thought would be interesting enough to encourage lots of talking.
Allison: I had an inkling that it wasn’t helpful…I knew at some level it was helpful, but on a larger level, they weren’t taking anything away from this hour and a half of word games…. so I started to wonder how we could make this more like life…. how could we make it more like a life that these people are missing now…with their communication disorder?
She was feeling discouraged, when she happened to have a chance conversation with her mother and was told a story. At one of her mother’s choir practices, a story was told about seeing the Queen and Prince Philip on one of their Canadian tours. Actually, all she saw was a few minutes of the royal couple waving from the back of a train as it passed through the small town where she lived, but it was enough for her. Then someone else said she also had a story about seeing the Queen and could she tell it? The conversation just kept on going. Another woman said, ”can I share a story?”, and still another said. “That reminds me of something…” And all Allison could think was,
Allison: Oh my gosh. This is what storytelling is about for me…so if I can find a way to share a story that stimulates a memory in someone else, that they then want to share and if I can help them find a way to share that…encourage them and say…whatever you need. …I will try and provide that instrument for you so you can share that story….
And so she searched for a few storytellers and the adventure began. As a professional storyteller working and teaching in Winnipeg, I volunteered to coordinate the other storytellers, and to be at the sessions myself. This paper comes directly from the log I kept at each session, and a long interview with Allison.
Allison’s group runs in blocks of ten sessions occurring every two weeks. The sessions are 90 minutes long. There are seven regular attendees: five men and two women. They all have some form of communication disorder as a result of a stroke, car accident, or an aneurism. Their ages range from 30’s to 60’s. When I refer to individual group members in this paper, I will not be using their real names.
It was arranged that two storytellers would come every time to the next block of sessions starting in the late winter of 2009. Sometimes only one teller was able to be there, and sometimes group members missed a session or two as well. Then there was a break over the summer months. As I write, we are in the autumn 2009 session, so it is the second session of 10 for the storytellers. We have just finished our 4th group session of this block.
First block of 10 sessions with storytellers:
As storytellers we came prepared to each tell a short, concrete, personal story or a simple folktale. Though all the participating storytellers were experienced in telling to a variety of age groups and audiences, none of us had any experience sharing stories to people with communication disorders. We did not know what the group would be like, but we were curious and open to what might happen. One of the tellers confided to me that she was a bit nervous on her first visit: afraid that she would do something wrong, or be insensitive in some way.
We were shown into a room with seven people seated around a number of tables pushed together, in the middle of the space. Immediately, I thought: “Too bad. We’d prefer just chairs in an open circle, with no tables between us.” We soon learned that the tables were necessary, as many of the group needed to lean on a surface for support, or had to be able to write or draw as they spoke. We were all wearing nametags.
The group was reserved at first, but listened politely when we were introduced, and they gave Allison permission to describe their conditions to us. A few did not make eye contact. It was clear from the start that Allison was expecting us as tellers to bring some sort of structure to the group. My only plan had been to begin as I do with most of my storytelling workshops. Even though we had been introduced and were all wearing nametags, I kept to my plan to ask everyone about their names. Did they know anything about why they were named? I began with telling about my own name, and we went around the table. I never get tired of opening a storytelling session in this way. It can take a fair bit of time, but when we tell about something as familiar to us as our names, then we can begin to slide gently, but surely, into storytelling without even realizing it. This would be our first experience of how the group members would respond.
Right away, the storytellers had to adjust. This would not be like a storytelling session where each participant listens to the speaker without interruption, and the flow of speech is easy and reasonably fluent. Allison intervened frequently when she realized that some group members had not completely heard the previous speaker, or when their speech wasn’t clear. She already knew that some members needed a pencil and paper to write down words or numbers connected with their telling, and to help them say the words that they’re searching for their writing also allowed listeners to look at what they’ve written and fill in the blanks for them. Some said one word, and a second word with Allison’s encouragement. Two people wrote down one or two words some had to be encouraged by Allison to say anything.
As storytellers, we had to learn that this type of intervention was necessary for group members, and not to be upset at the interruption of their story. After the first session, we felt comfortable also saying that we didn’t quite follow what was being said, and could the person say it again, or write something to clarify? It was far better to do this than simply nod and pretend to understand, when we hadn’t fully grasped what the speaker wanted to say.
Allison: I’ve taken on that role, as the person who stops the conversation because I’ve had to. I’m the person who stops the conversation and asks for a repeat. It makes me feel a bit awkward…saying, “can you run that by me again, I’m really sorry”…. because that’s hard in conversation. If you get someone like Janet who says something that she knows is funny and nobody laughs because they didn’t hear what she said…I have to say, “ I ‘m sorry I missed that”… They’re getting used to it and I’m getting used to it.
On that first day, I told a story about the time when my brother and I were children and we found some bones in a cave by the river. Looking back, I realize that the image of children finding bones in a cave, pulling them out of the dirt, washing them off and then wondering what they could possibly be, would prove to be an apt metaphor for the process that Allison had brought the storytellers into. For all of us, storytellers, therapist, group participants, it has been new territory, where our only important thing is keeping an open mind, not closing down opportunities, and staying curious about what could happen.
With Allison’s encouragement, some memories came out, connected with finding things when we were young. Bill told of finding arrowheads on the railroad track and giving them away to a girl to impress her when he was 12 yrs old. Janet told story of her two brothers playing in an abandoned city lot and finding “neat balloons” that were really condoms, and bringing them home to their mom to show her. George wrote some words and made some simple stick like drawings on a paper to tell us about working up north for a fur trading company when he was young.
At the second session, we told stories of animals: about squirrels mistaken for baby pups, and a wild bear kept in a basement by an eccentric family member. Bill declared flatly that he had no memory from before his first stroke 4 yrs ago, but then we reminded him that at the previous session he remembered about finding the arrowhead when he was a young boy.
Now there was a continuous lively discussion, with people jumping in with anecdotes about bears, rabbits, dogs and wolves. Participants continued to speak using single words, or hurriedly writing down words, numbers, or making drawings. Everyone had also brought family photos and we spent a fair bit of time going around the table as each person described their family members as best they could. Allison was very helpful here, because she has known these people for some time and met many of their extended families. Compared with the first time, I noticed that people were very animated. Velma especially enjoyed telling us about her large blended family. Larry, the youngest member, was smiling this time, although still not saying a word. Others were grinning and looking around at each other. “This is just what I hoped would happen.” Allison commented to us at the end of the second session.
As the weeks went by, we could feel that the group really wanted us to understand their stories, and laugh, cry, or wonder, along with them. After all, when we told our prepared stories, they could hear and understand what we were saying and so enter into the story fully as listeners. Here are the notes from my log to give a taste of how one group meeting proceeded:
Mary Louise’s log from session 5
Stormy weather and roads poor…. 4 came, plus Allison and me. Bill said that he told his granddaughter my story about the baby pups and she liked it so much that she wants him to tell her more stories (she’s 13)…so I told my story of “Pop and the Cat” for him to tell her.
This led to a discussion of having nine lives, Christmas turkeys and chickens and more personal stories came out. We also talked about music of the 60’s and the importance of music.
Bill told of how his wife played the organ, songs like Tom Dooley and Amazing Grace. He sang some of Tom Dooley and I sang along with him.
John and Larry are both still quite silent, but by their glances, smiles and turning of their bodies towards the speaker, it is clear to me they are engaged.
I asked Brian if he had children…3 was the answer as he held up 3 fingers…and did he see them…only one daughter has anything to do with him, he doesn’t see the other 2 (a son and a daughter).
Janet said her children are the same…they want their old mother back…and she has an answering machine at home with her pre aneurism voice on it and her daughter won’t leave a message on it…she just cries…it’s the only thing Janet has left of what she used to sound like. We talked about how difficult it was to lose your children, because they don’t know how to act with you after a stroke. This prompted me to tell some of the story of the Odyssey where Odysseus comes home, and no one recognizes him except his old dog.
The first block of sessions continued until early summer, with stories of growing up, of wars, of wild animals and tobogganing in the snow and of singing in hard times. As storytellers, we only prepared for the session coming up. Then we went to the session, told our stories, listened to what everyone had to say, and that gave us an idea for a story the next week. So in a very real sense, we were allowing the group participants to determine the pace and the content of the sessions. The only apparent structure was this: no planning beyond the upcoming session. Each time we came, it was such a pleasure watching the group members become more alive, more comfortable with us. It was clear they wanted to hear our stories, and with Allison’s gentle prompting they recalled memories/anecdotes along similar veins as the ones we told. We were becoming engaged as well. We looked forward with excitement to each one of those sessions. We started wondering, “What will happen this time? What kind of comments will someone make, what kind of story will they tell?” The storyteller who had expressed nervousness at the outset soon found after one or two sessions that she wanted to continue coming because she actually enjoyed the experience and was looking forward to telling her story and hearing what the others had to say. We were rapidly becoming a small community. Schram has written about this very effect that storytelling can have on groups. “The language of stories is a powerful tool that transmits both the meaning and the event, and along with the voice of the storyteller, serve as a bridge to create group continuity and group history.”(115)
Allison: I am really enjoying watching everyone. It is wonderful to be part of this process with people who are having a difficult time communicating thoughts and feelings, but are feeling more confidence in the group so they try. Plus I am thinking of learning to become a storyteller.
How many ways can you tell a story? The second block
Groups are natural social arenas and thus potentially fertile grounds for the ongoing storying of self. (Shadden & Koski 102)
After a summer break, the fall sessions began and participants wanted to tell a story from their own lives in a more direct and deliberate way, rather than simply responding to the stories told by the storytellers, as had occurred in the previous block of sessions. It happened in this way. After we had all greeted one another, and were all sitting at the table, Allison asked me if I had a story to tell. Before I had a chance to answer, Velma spoke up, “No, wait a minute. I want to hear what everyone did over the summer.”
She began asking each group member in turn and by her firm manner, everyone seemed to know that they were expected to respond. She would not take a shake of the head for an answer. John surprised us all by saying that he had made a trip to his family cabin to try and remember who he was before his accident. When I asked if he went alone, he answered, “No, my wife and two daughters.” It was the longest sentence I had heard him speak up to this point.
I caught Allison’s eye and could see that she was as surprised and delighted as I was. Taking her lead from Velma, she asked me if we could begin helping people work on a story of their choice and I said, “Yes…next time if people could come to the group with any idea, however small…. one event, or a place they liked, and we would start organizing this germ into a story. Allison looked around the table, “Does anyone have any ideas right now?”
There was only fifteen minutes left in the session, but again we went around the table and the ideas came out and five participants identified an incident or event right away. When Paul said that maybe he could tell a sports story and Allison said. ”No,” I replied…”Don’t censor the ideas. Let them choose.” Everybody, including Allison chuckled.
In the very next meeting, we began. At the time of writing this paper, the group has met 3 times this fall, and so far, we have heard stories from four participants. Three stories (John’s, Larry’s, Janet’s) were set in the deep past, when the people were quite young…. from 12 yrs to early 20’s. One story (George’s) happened post- stroke and was set in the present.
The Story Ideas:
Janet: My first outing with Don
George: Laura and George’s puppy
Larry: Lynx Lake, early childhood, peaceful
John: Adventure at Eagle Lake cabin. It will be funny
I asked everyone to think about his or her story idea over the next two weeks. Then next time I would help them begin telling their story. I asked Allison to have large blank paper, and some coloured markers for us to use. My idea was to keep the stories to one incident or place as much as possible. After everyone had a chance to tell their story once, then we could begin helping them organize it and look for ways to tell it more formally. The first pass through would be to allow them to give the germ of the story. Janet volunteered to be the first one to tell about her story, so that everyone could see how it could be done.
At our next meeting we heard Janet’s story. Janet’s story fell into three distinct scenes, and I began by drawing large circles on chart paper to represent those scenes in her story. Allison recorded every word she said, and I wrote down key words, actions, and descriptions in each circle. But something else was happening that we didn’t expect. Everyone present was attentive to Janet’s words, and nodded when she described her romantic plans for Don, and hooted when Janet demonstrated how Don crossed his legs and drew his Zip lighter up along his thigh to light his cigarette. When Paul asked Janet what she thought about Don’s method of lighting up his cigarette, she replied, “That did me in… I was slain.”
After Janet told her story, Allison was concerned that group members would not be able to fully tell their story in any way that could be easily followed or understood by a listener outside of this small group. I agreed, but said, “Right now I am only at the stage of drawing out the story with all of its feelings and facts. I want the story to come out any way it can right now. Later we’ll look at how it can told: I’m confident that ways will come.”
The other marvelous thing that happened was the decision of the group about how we would proceed with formally preparing each member’s story. Allison and I had thought we would split up into smaller groups of two members with one facilitator (Allison or a storyteller). At the next session, we were about to begin working on everyone’s own story ideas, when I looked at the group of us gathered around the table, all looking quite comfortable, and I realized that I wasn’t too keen on the idea of breaking up into smaller groups. Something made me say to everyone gathered there. “Do you want to break into groups, or does everybody want to hear the next story?” There were nods, gestures, and comments: “Yes,” “Stay here,’ “No groups”. Velma said “we are a small group, let’s stay together”. When I asked, “Who wants to be next?” Larry started nodding his head, pointing to himself with his good hand, and saying “I …me”.
We worked on Larry’s story for the whole 90 minutes. He began by saying “peaceful”. We thought he was referring to growing up in Lynx Lake. But what he really wanted to say was he went with his father and his father’s friend on a fishing trip. Larry could write the words and letters for 12, but we did not know if his story happened 12 years ago. Finally someone else asked him if he was 12 when the story happened. He nodded and said “yes”. Then there was a long silence while Larry tried to find words. He kept repeating the words “memories…. patience”, over and over again. But everybody kept persisting with their questions. When Larry talked about his fish, and was trying to describe how big it was, and he was holding up his arm to show the length of it, and Velma said, “It was as big as a whale!” and he nodded vigorously and kept repeating “yes, yes yes!” as he smiled at her.
At the previous session, I had done all the talking and questioning of Janet, and helping her describe the scenes in her story: this time everyone wanted to be part of helping to pull out the story. They didn’t want to hear about the stories; they wanted to be present when the event occurred of one person telling a story. Clearly, we had stumbled upon a simple, yet crucial awareness that it’s a very human characteristic to be curious about another person’s story. Ryden writes of her writing workshop evaluations where participants told her “hearing others’ stories was the best feature of the workshop.” She goes on to quote Arthur Frank: “storytelling is for another just as much as it is for oneself.”(Ryden 68)
Zoya Erem 2011
When asked if he would ever go fishing ever again, Larry shook his head “no”, indicating with a gesture that he had only one good arm. Through discussion with other group members, Larry was encouraged to re- think his idea that he would never go fishing again. This is exactly what happens in everyday conversations between friends. Shadden and Koski have called this remembering of the past, and looking at possibilities for the future, “restorying”. They write that restorying can happen “when there is a social context in which having aphasia was acceptable”. (104)
The next time we met, I was ready to help one or two more members to tell their stories, when Allison asked Larry if he would like to tell his story again, for practice. Larry nodded, smiled, and said “yes”. More details of his fish story were revealed. This time, Larry was more eloquent as he retold the story of catching The Big One. I noticed that instead of single words, he actually used short two and three word phrases a few times, instead of single words. When this was pointed this out to him, his eyes flashed at us, whether out of surprise or pleasure, I am not sure.
Allison: Look what that patience did at the session. Larry again and again he keeps saying “ patience, patience …memories…memories.” And we gave him the time and this stuff just kept coming to him and coming out…I don’t think that guy’s done so much talking since his stroke! It’s amazing!
By the second block of sessions, John actually began initiating communications. When George was telling his story of the new puppy, John looked directly at him and asked if it was hard to train a pup, and did it take a long time? It seemed as if his curiosity about the baby puppy overcame his self-consciousness about his communication disorder.
There is now so much expression in John’s glances. They tend to be sidelong, as he is a big man confined to a wheelchair. He showed no reaction at first. He just sat there and only occasionally looked around. Allison is in regular telephone and email contact with his wife and tells me that his family has been amazed at his changes in the past year. They are once more enjoying John’s personality and reported that when John home from his most recent session, his girls said that, “Dad sounds normal. He sounds like he did before his accident”. When John was discharged from the rehabilitation hospital after his car accident, he could not even swallow. There was little hope held out for him, even though he had received some very effective individual therapy while in hospital. After George’s story was finished, John began his story without preamble. He simply wheeled his chair closer to where Allison sat, recording at her laptop, and told the following story.
I was fishing at Eagle Lake in the spring and I went to the north end and the west of this island.
I caught a big pickerel fish using a black and white spinner.
I was fishing in the bay, which was isolated from the rest of the lake.
I trolled using the boat. It took a couple of hours to the island and to the bay.
This was before I knew Karen (John’s wife).
It was a neat boat and a good motor. 7 1/2 horse power.
I was North of the fishing tourist cabins. It was a nice trip to a secluded spot. I only fished there once and I was successful. But I only went once.
So what has been happening here? Allison thinks that in our conversations we are creating space for something to come in. “How much not talking are we doing…how much quiet is there?” Then she went on to say about the storytellers,
Allison: You guys don’t have a need to fill space. Is that something you learn as a storyteller?
Mary Louise: Yes
This ability to remain silent is really stilling one’s own mind so that one can take in what is being said. All three storytellers who have been involved with Allison’s group have this ability, learned through many years experience as storytellers. Murphy has written a book about family meetings in palliative care where he talks about the roles of the guide, the storyteller, and the witness. The witness, Murphy writes,does nothing, because the experience of witnessing is simply the experience of being. (125)
Allison: That’s what you do for me…I’m not completely uncomfortable with silence. I’m a good listener…I am uncomfortable with not having a target…. so it was comforting for me to be able to look to you to say to me “ that’s OK. We don’t have to have it a certain way”. Remember one of our first conversations where I said that I felt compelled to do something, to document these, to publish these, and you said,
”No. It’s ok just to have it occur…that’s enough.”
So then I was able to settle myself and say to myself, “Just that it occurred is enough.”
And still when fantastic things happen! You want to tell everybody about it. What Larry did was fantastic… Larry’s story was definitely a turning point for me. When he first came to me, he wouldn’t talk at all.
We are learning together that the group doesn’t have to proceed in a certain pre -planned way. It doesn’t mean that something is not going to happen. Whatever anyone says in the group is acceptable because therapist and storytellers are not looking for anything in particular. We have also learned that the group needs members who do not have aphasia but who are completely willing to share stories of their life, as well as be there to help guide participants when communication is difficult. Murphy describes the guide as one who facilitates connectedness ….he calls it a spiritual practice of offering love that becomes a cocoon of safety for storyteller and witness. “There is no script, or series of questions, simply a friend and familiar traveler in the underworld who encourages and nudges the storyteller to go deeper into the story.” (126)
Allison: we didn’t go in there with a structure. We just allowed it to unfold. Interestingly, the most, the greatest transformations have occurred in the last year…I can easily say that…it’s amazing to me…in terms of magnitude…in terms of what every Speech Pathologist wants to see. That’s what I’ve seen this year. As soon as I released myself from my need for structure and certainty. Part of that was handing it off to you. I’ve been entrusting you with it. If I didn’t have you to hand it off to, I wouldn’t have had the courage…I wouldn’t’ t have had the skills either.
Allison’s confidence to let the sessions unfold, and the storytellers’ confidence to tell a well-chosen story, or be a supportive listener, has been crucial to the unfolding of the group process. Most thrilling of all, though has been group members’ growing confidence in themselves, shown by their increased willingness to take risks, to initiate conversations, to share profound feelings of loss and sadness. They have spoken of personal relationships that haven’t yet been repaired, and of a deep love for family members, and special places. Even though Allison has known the group members for several years, she has found out more new information about their past and present lives in these sessions with the storytellers.
Allison: It ends up being more therapeutic than I could ever dream… to be fully human…so much has been taken away from these people…no argument, or denying that…. but to provide a group that gives back that much!
Mary Louise: it’s amazing
Allison. It’s not a big deal…it’s a small thing to do
Mary Louise: It’s an elegantly simple thing to do, but you need the right people. It needed you as the person who said, “I don’t believe in plateaus”
Allison. It’s about exploring and revelation…it’s exactly what this is about…we’re exploring and we’re revealing.
Sunwolf (2) has described a functional model of the healing effects of sharing stories:
As a seed … for learning…teaching/learning function
As a tool…to create new healing realities
As a scrapbook…. to hold/store memories
As a fore flash…to vision future healing possibilities
As a bridge…. to connect people
Certainly the sharing of stories in the aphasia group has touched upon all of her categories. The most surprising to me was the category of fore flash: to vision future healing possibilities. When Larry said he would never fish again, because of being disabled in one arm, it started a full discussion of possibilities, with other members of the group assuring him that it wasn’t impossible to fish with one arm.
In Allison’s group, the participants themselves have guided us. They have shown us at each session just how willing they are to share in a fully human way, the various kinds of discourse that is available to all of us when we are able to live a rich life.
We’ll continue helping group members do the initial telling of their chosen story. I can’t wait to hear why Velma hated her husband when she first met him. I’m curious about the stories that Brian and Paul will tell us. Maybe Bill will be able to return to the group as well. Hopefully Allison will look into putting Larry story in some picture book form so that it can be told to his young daughter. Perhaps family members will come to hear all the stories. Or maybe it will be enough that everyone has a chance to tell a story in this small group.
Allison gets the final word in this paper. When I asked her, “what should we call these group sessions? I’ll have to call them something when I write about them. What about using the word project?” She was very firm about this, “No, the word project suggests it will come to an end. I have no intention of ever ending this. This is a service that everybody should have access to…an ongoing public service.”
Mary Louise Chown, (BA, BEd, BFA) is a storyteller, teacher and visual artist living and working in Winnipeg, Manitoba, Canada. She is currently writing a book about her work as a visiting artist in hospice and palliative care settings. . She was Winnipeg’s first storyteller in residence, at Winnipeg Public Library, and has co-founded many successful storytelling ventures, like BraveHeart Storytellers, and The Magic of One storytelling and music series for adults. Contact author: 204-489-6994, www.marylouisechown.com
Allison Baird, (MA, CCC-sp) is a Speech-Language Pathologist who founded Speechworks Winnipeg, Manitoba, Canada Contact information: 204-231-2165, www.aphasiaworks.com
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