Transcript from Recent Talk
Recently I was given the privilege of speaking through Zoom to a Brain Injury Rehabilitation center in upstate NY as part of their BI awareness month. To get ready for that presentation I adapted and clarified some parts of the speech I shared a year ago in tandem with the release of my book. Here is a rough transcript of what I shared…I think, because of brevity, it is slightly easier to follow the suggestions I make in this presentation. I hope you enjoy.
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“There’s no greater agony than bearing an untold story inside you.”
That’s a quote by Maya Angelo that I just absolutely love, because for me, it was four and a half years into my recovery when I found the power of storytelling — it was June 18th, 2004 when professional storyteller, Jay O’Callahan, came to my town — professional Storytelling — this was different. I had some experience performing stories as a summer job at nearby amusement park, I had heard stories from the librarians when I was a child, so I wasn’t completely unfamiliar, but I thought, okay, its for kids. I mean, O’Callahan was a professional storyteller, so I expected his stories to be just really good fairytales, so I went…and…
See, I was trying to figure out how to live. Like I said, my Brain Injury from a car accident had occurred four and a half years earlier, in November, 1999 when I was a high school senior, and after the accident I had worked hard, graduated high school, started at the local college while attending out patient rehabilitation, and that sounds good, sounds like I was getting my life I track, but I wasn’t. I was lost. All my post high school plans had been destroyed by my injury, and I didn’t feel committed to anything I was doing in university, didn’t know what I should do or could do with my new abilities after brain injury and I was kinda fed up with life, so I decided to “Take some time off” — stop out of college to “Figure things out”. That’s what I said, but I dropped out. I was giving up.
Things were getting bad, drugs, lotta depression, working nights for minimum wage — I, well, wasn’t happy. I wanted to find anyway out — so I thought, okay, storytelling for kids, and I went to see O’Callahan, and it wasn’t a child’s story. He told this story called Pouring the Sun, and in this story, he performs it as an eighty year old woman who had immigrated from Russia to the United States as young adult, and at the beginning it’s established that this woman is very good at calming horses — when a horse goes wild she can —
— Coo, Coo —
She calms it down.
But the story goes on and there’s comedy, tragedy, romance, children being born, a family, one child dying — it’s a life. And there comes to a point where she’s at this strike, it’s at the steal mill where her husband and son work — she’s bringing food for them on the picket lines — and it is mayhem — anxious workers — some striking, some trying to get into the steel mill to get a days pay — families watching, mounted police on nervous horses wide eyes darting around the mob, and there’s a young girl with a bag lunch for her, maybe brother, father, someone on the picket lines and she steps in front of a nervous police horse — the horse rears back, and O’Callahan —
— Coo, Coo.
The theater is — it’s a sold out house, more than 300 people, and everyone, we all just (suck in). No other sound. Never had I felt such an experience in any performance, and that was the moment I knew I needed to be a storyteller.
Because O’Callahan had shown me just a glimpse of the power of storytelling. And I thought I had a story that I wanted to share — Brain Injury, I survived, right? It’s a story — but I had no idea how to start.
So I continued to follow that drive, I stumbled around as a storyteller, was inspired to return and finish undergraduate university so that I could attend a graduate program in storytelling that I learned about at East Tennessee State University. And jumping ahead now in this story, it’s November of 2008 and I was in graduate school and thinking about the performance thesis I had to create as part of my master’s program in storytelling. Now, this presentation was still at least a year and a half in the future, and I knew the subject material, because it was gonna be that piece about my brain injury, but I still had no idea how to actually composing this.
Then, while doing some research on the subject, I became involved with the Crumley House Brain Injury Rehabilitation and Living Center, located just twenty miles away from my university. I started out by visiting every other week, sharing fun stories and folktales with the residents, all survivors of Brain Injury, and then just talk. Sometimes I would share an experience I remember from my recovery, and this…this was amazing. I mean, the residents would hear my stories, stories I thought were unique and only applied to my emotional experience, and then responded with stories of their own that shared events and emotions. And at the time, this kinda blew me away, because what I remember from my early rehabilitation is being told time and time again that every experience with recovery from brain injury is different, and this is important information because when recovering it’s not good to form expectations of how much you’ll heal or how quickly things will happen — you just can’t create any sort of expected recovery timeline — but what I didn’t hear, or at least I didn’t understand at the time, was that there are common emotional experiences that many survivor’s of brain injury have in common, and sharing these experiences with fellow survivor’s at The Crumley House helped me to realize that, despite very different details and circumstances, there was a lot we had in common.
And it was through these interactions that my graduate thesis script began to come together. I collected stories with permission through interviews with residents at the Crumley House, and then went on to interview family and friends who were a part of my early healing process so that I could see the journey of recovery from different perspectives. Then I took all these short stories collected from dozen’s of interviews and laid them along the storyline that I remembered from my accident and looked for common themes, trying to find ways to connect all these different parts. And as I did this work, I realized there was a lot I just didn’t really understand — parts of my healing I had kinda ignored. See, I recognized the change in that occurs people after Brain Injury, there had been many changes in me, and I knew that this storytelling needed to address who I was before the injury and then who I am now, I needed to explain this transformation, but this had the side-effect of causing me to ponder, “Well, okay but Who am I? How am I different? It’s like, am I a different person now?”
Well, those are hard questions, but with them mind, I began to construct a story that filled in what I didn’t understand, and I had to invent some parts, just to fill in the gaps, but it was in no a fantasy. I did my research and learned what could have happened and logically explained parts that I didn’t have enough information on my own to understand. Then I made choices about what would fit and created a story that made sense about the events of my injury and recovery, a story that answered the questions in my head. The way I figured it, in order to create a storytelling piece that an audience could understand, I first had to answer any questions of self-identity in a way I could understand. I had to acknowledge and accept who I became after my brain injury, and more importantly, appreciate who I am now.
And this is where the ideas for my book began to form and is the big idea of this talk — that storytelling can be used as a tool for accepting and appreciating self-identity after Brain Injury. Getting into this claim, we first need to establish what is self-identity. I mean, when we look at pictures of ourselves, we can say that is a picture of me. I see pictures of myself as a young child, a teenager, a young adult, a married man, and the persons in all of these pictures are nothing alike — different looks, different attitudes, different abilities, different preferences — but I know that all those people are me and I have no problem defending such a claim. That’s amazing, but how does that work? How is it easily accepted that all these strikingly different people have the same identity?
Now, an idea that’s currently accepted in a lot of academic circles, and one I agree with, is that its a person’s story that connects all these moments as one’s self-identity. The changes that happen over time can be accounted for because there is a consistent storyline that allows for these changes to happen in a gradual manner. In some cases there may be a specific event that leaves some mark and accounts for such an instantaneous change — that terrible memory from the party that explains why you refuse to eat pizza — but it is something that can be defined, can be recognized, can be pointed to and you can say this the moment when that change happened.
With changes after brain injury, there is no real moment like that. A person is usually going about a pretty normal day, a lot of times there is nothing really exceptional happening, then ....Whish... the person starts getting awareness again in a completely different place and time.
And it’s not usually a matter of opening your eyes and wondering where you are — for me, I was awake for almost three weeks before any memories decided to actually remain in my brain. And when my memories began to stick there wasn’t a shock to learn I had received brain injury – I assume I had already learned this even though I have no memory of the injury or of learning about the injury. That was simply the condition in which I came to awareness, but there was no event I could pick out that explained how I got there. Yes, I knew I had been in an accident and I knew there was brain injury, but those were things I was told about — there was no memory in my mind that I could point to and say, “This is what put me in my current condition. This is what caused me to change.”
Because after Brain Injury those changes are all over the place, but to add to the confusion, a lot of times these changes won’t even be recognized at first — everyone is focused on the survivor being alive, so that any changes may simply be overlooked or written off as something that will go away soon. And the survivor continues to heal, goes back to a home community, begins the return to a “normal” life, and so the survivor is trying to act normal but…it’s different.
I think about it like this — imagine you have this bag labelled “normal behaviours” that you always reach into when deciding how to behave. These are actions and responses that have developed over years of habits and experiences that occur as a result of life events. Then, suddenly, when brain injury happens, all the behaviours in this “bag” are swapped out for a different set of behaviours that are similar, but more extreme, less filtered, and as a survivor, you don’t know that this switch happened. You’re reaching into the same place to grab a response or a reaction, but instead of the action that everyone is familiar with, you pull out one of these new, unfiltered behaviours. And friends and family might not be comfortable, or may even be downright offended, and this can cause people to comment on how you’ve changed and you’re not like you “used to be”, yet you’re reaching into the same bag for “normal behaviours” and they are not coming out in correct manner. You ask the people you know, “Hey, so what about me is different?” And they might respond, “I don’t know, it’s just you — I mean, you just act and do things differently. It just doesn’t seem like you. It’s just, I don’t know, it’s just you’re not like — You.”
And this is hell: being told by people you love and trust that You are not like You.
There’s been a change — the brain injury has caused a change in temperament and attitudes and physical ability, but there is no event or events, no moment in the memory, that explains these changes. No wonder there’s identity confusion after brain injury. And this is how storytelling can help. By creating an organized, logical story, a survivor is able to have an understanding of what happened — creating something that is not a series of reports told by other people or a recitation of medical gobbledygook that is important, but you cannot comprehend — its creating something that’s personal, understandable — a story you can point to that explains what happened.
When I did this, Brain Injury became something that was no longer an event that happened to me, but by turning it into a story, I was able make brain injury something that I had experienced and I could talk about, let me understand that recovery is something that I am still experiencing. It gave me agency over the memory of my experience and allowed me to see how all of it is a part of Who I am Now.
So that’s a pretty heavy claim, about storytelling being used in rehabilitation, and it hasn’t been scientifically studied enough to make any statistical claims, but there are a whole lot of anecdotal accounts that support the idea of further research, and it is an idea that seems to be on the brink of really blooming into the medical community. After finishing my book, I began working with a team of researchers to study what is being done on this topic and our first journal article is currently being revised for publication, so if this interests you, this is a good time to become involved with research. Unfortunately, it also means that there is no current recommended method of how to compose a storytelling piece after brain injury, and the prospect of composing and performing a piece can seem really intimidating, so to try and help I do have some starting suggestions from my own experience that may help find a place to begin.
Schedule the event. Make sure you find a date when you hope to share this story, otherwise your story might drift away into the ether of good ideas that never quite happen.
Next, journal. This is not a recovery journal, though I do recommend starting one of those as well, but keep a journal where you are able to keep thoughts about your storytelling project — note and thoughts about the research, personal reflections, discoveries you make in the process. A journal can be an important tool that allows you to look back on the process and even find new inspiration in old ideas.
Finally, allow the story to change, because storytelling is a live event, and that means the story must live. That’s one of the reasons why I push for specifically storytelling as opposed to writing a book or making a movie, because in storytelling you may be working from a script, but that can continue to evolve as you gain a new, deeper understanding of the events that happened — you learn more about your own story. By being a live event, your story can continue to grow and evolve with you.
I hope these thoughts help and inspire you, and I look forward to hearing your story. Thank you for your time.
