NEW WEBSITE!!!

 Hey friends,

New website where I'll be keeping the blog...

www.lethancandlish.com

I'm all official now!  And already new entries to look at.  Check it out.

Transcription of Speech "Survivor to Storyteller"

 

This is an edited transcript of a speech I gave at the Brain Injury Services Online conference, October 29, 2020 with the topic “Telling Your Story After Brain Injury.”  This speech expands on many of the ideas that I present in my book, “Who Am I, Now?” and presents a more complete argument for why storytelling is a useful tool in rehabilitation after brain injury.  I feel the book presents much of the theory behind my ideas and this speech shares real examples of how I believe my ideas will work.  Please read, comment, share and enjoy.

Hello, I am Lethan.

When I learned the general topic for this conference, “Telling your story after brain injury”, I was thrilled -- I am a survivor of traumatic brain injury, I have a Master of Arts degree in Storytelling, and I recently finished a book about the importance of storytelling after brain injury.  This topic is kinda exactly “my thing”, so I’m honoured to be able to share some of my thoughts on the subject with you.

I’m going to start with a quote by Maya Angelou — “There is no greater agony than bearing an untold story inside you.”

Hold on to that quote, because we’re going to come back to it, but I open with it because, when it comes to brain injury, everyone at this conference has stories. It could be you’re like me, a survivor, and you have stories about almost dying, rehabilitation, and the painful long return after brain injury. Or maybe you’re a caregiver and you’ve got stories about someone you love — a child, spouse, parent — and the difficulties of providing seemingly endless support that is not always appropriately appreciated. Or maybe you’re a doctor, nurse, lawyer, friend, colleague — whatever the case, we’ve all got stories, but most times these stories are never shared, and we keep them inside for a bunch of reasons. 

For one, these are difficult stories. Medically and emotionally complicated, confusing — we probably don’t fully understand everything that happened or is still happening.  And second, it’s hard to find someone who’s able to listen — it’s not the sort of thing you use to start off a conversation on the street — “Hey, how you doing? Good? That’s great! Let me tell you about my brain injury” — that’s not done.  To tell these stories you’ve got to find the right time, place, and it takes work.

Furthermore, these stories do not show you in your best light — I don’t care if you’re a survivor or caregiver or whatever, the stories get dark, and I’m certain there are some times when you acted in a manner that you’re probably not particularly proud of.  No shame for whatever happened, but it does make the story harder to tell.

And then there are all the other reasons to avoid storytelling in general — fear of public speaking, not being sure of “How do I tell a story”, respecting confidentiality.  There are a lot of reasons we don’t tell stories about brain injury, but these stories of survival are stories that Must be Told.

I have this idea, and I call it my Big Idea, because I’ve been dedicated to reading, writing, and philosophizing about it for the past six years, and five years before that I started with a master’s thesis performance project about TBI, so I’ve been mulling this idea over for quite some time. 

But this Big Idea is – Storytelling should be used as a tool in rehabilitation after traumatic brain injury for three reasons:
1) Storytelling provides inspiration for survivors;
2) Assists with the process of reintegration into a community after the initial hospital rehabilitation;
3) and Helps with the acceptance and appreciation of self-identity after brain injury.

In this speech, I’m going to explain my Big Idea by telling the story of what inspired it, and elaborating on each of those three points along the way; this will then be followed by suggestions of how you can prepare and tell your story about brain injury.

That said, this is a story, so...

Once upon a time...

In 2008 I was in graduate school, studying storytelling, and getting ready to begin work on my master’s thesis performance project when I was introduced to the Crumley House Brain Injury Rehabilitation and Living Center. Already a survivor of brain injury, I had entered the storytelling graduate program with the intention of creating a piece about my brain injury for the required performance thesis project, but at the time it was just an idea.  My thought process was something akin to, “Oh, I had a brain injury and I survived — that’s probably a pretty good story...” but I had nothing more than that. So, when fate introduced me to the Crumley House, I thought this could be a good opportunity to learn more about brain injury, maybe find some inspiration for the piece, and get to know other survivors.

I began to visit the rehabilitation and living center two or three times a month — about every other week — volunteering as a storyteller to share some fun folktale performances and, more importantly, to talk about my experience as a survivor.  It was through sharing my experiences of recovery that I began to see the healing power of storytelling.

These were unrehearsed, unprepared stories that were pulled from choppy memories that were lodged deep in recesses of my mind, but by returning to these stories in the company of fellow survivors, I was able to recall some deeply filed events and emotions with new clarity.  Furthermore, what I found amazing was that the residents at the Crumley House understood what I was talking about and we began to have conversations that shared similar emotional experiences. Up until that point, I hadn’t interacted with many other brain injury survivors – not as a conscious avoidance, but because I hadn’t been aware of any opportunities and hadn’t actively sought out fellow survivors – and to have people understand these events, and share stories of similar experiences that, until then, I had thought were unique was amazing!

We’re talking about emotional experiences that a lot of survivors will probably understand, but are unknown to people not familiar with brain injury. For example:

- Having a stew of emotions mish-mashed and constantly simmering in your head — and it’s a stew of exuberance and joyful celebration for the fact that you are alive, mixed with disgust and rage for the fact that you’re still living, stirred with appreciation and love for all the people who are caring for you, and the spite toward every aspect of the universe for leaving you stuck in this oppressively solipsistic situation, and then there is this huge chunk of pure apathy plopped on top that coats the whole thing. And trying to explain this stew is the only honest answer you could give if a caregiver asks, “Hey, how you doing today?”  but being unable to coherently express this mess, when you’re asked the question, you say, “Me? I’m fine, I guess.”

- Or the frustration at having to relearn things I knew I should know how to do. Like walking.  I remember, walking technique — heal, toe, heal, toe — yet how hard this simple task was. And then there’s this shameful sense of accomplishment when being congratulated for successfully completing this rudimentary task.

- And the embarrassment at the over expression of emotions. Any emotion — joy, anger, sorrow, excitement — it’s this volcano with a lava flow of emotion erupting, making everyone around uncomfortable and meanwhile, there’s this reason, this rationality that’s aware and watching from back of your mind going, “No, no, no — this is too much — no, that’s not right.”

And the survivors at the Crumley House would hear me describe these experiences, understand what I’m talking about, and then tell about their own experiences — things I could relate to and understand.  We had this conversation, a conversation where we share the fact that we’re on this journey together.

And that brings me to the first point of my Big Idea — that storytelling inspires survivors. And this idea works in two ways.

First, and I think this is the most obvious way that storytelling can be used as a tool, there’s the inspiration that comes from a survivor who’s had a good recovery experience sharing his or her story.  And this is important – it is why speakers are invited to conferences such as this – to share the experience of someone who has been through parts of recovery and who has worked through challenges that other survivors might be experiencing.  Someone who’s not a therapist, not a teacher, not a friend saying, “It’s going to be alright,” — but someone who can say, “No, this sucks. It’s not going to magically ‘go away’ when you get all better.  Brain injury is a part of you now, but know that this new part is okay.” We need inspirational storytellers to show that brain injury is not an ending of anything.  As I said before, this is actually one of the main reasons I was first invited to visit the Crumley House, the staff and residents hoped I could help to provide inspiration, but what we didn’t realize is that this is only part of how sharing stories works.

You’ll remember that I said that the conversation went both ways? When visiting, I would share what I remembered of my experience, and then a resident would be reminded of his or her experience, and this might remind another resident of an experience, and then another resident, or me...and whenever I would share my stories of recovery it was the stories that were shared in response that I found the most rewarding.  And since I’ve begun to speak at some brain injury survivor’s conferences, the experience has been the same – it’s the stories heard from fellow survivors that continue to teach me about my own healing process.

For years after my injury, I thought that my story was unique. I remember hearing time and time again how the experience of recovery after brain injury is different for every person and there can be no timeline for how long it will take or what the healing will actually be, and this information is true, but what I don’t remember hearing — and I don’t know if I wasn’t told or if I just didn’t listen — but what I didn’t hear was that there are events and emotional experiences that, while maybe not universal, are at the very least not uncommon. Similar vents in recovery that may seem unique actually happen to many people.

By sharing stories with fellow survivors — that’s telling stories and hearing stories — I learned that navigating the experience of recovery after brain injury isn’t so much like you’re trekking through a jungle of unknowns, but more like you’re on a path that’s been travelled before — treacherous and you’ve got jungle on either side, but people have used it before, and if you’re careful, you should make it through just fine.

So in terms of my graduation project, this is good.  I’m gathering stories and getting a start on my performance thesis’s project. The stories I hear from residents are stories I relate to and understand, and I’ve begun sorting through memories from my own experience.  These are not composed stories, but are mostly told off the cuff as they spill out in story sharing conversations – vague, emotional, half-memories – and I realize I should write them down.  This would be material the performance project —it is, after all, going to be a storytelling about my injury.

And I get a notepad and start scribbling thoughts, phrases – figuring out what sort of storyline I can put pull from this process – and I realize that there is a lot about my accident, especially early recovery, that I don’t know.  I guess it makes sense that I don’t know what happened, I was in a coma after all, and after that my memory wasn’t too hot, so I decided I needed to talk to the people who were there — family and friends who were a part of that time in my life.  I figured they could help to tell me my story.

During the holiday semester break, I went back to my hometown and scheduled times to talk with family and friends, and a lot of people were very generous in sharing their time, but no one could tell my story. Not-a-one.  Turns out, when I asked them about what was happening at this time, everyone told me their own story.  It’s funny to say that now, but I had been so focused on My story and My accident, that it hadn’t occurred to me that, Of Course everyone had other things going on.  Everyone had their own set of challenges in dealing with my recovery once I left the rehabilitation hospital, like:

 - My parents having to drive me everywhere and make sure I got to all the doctors’ appointments and check-ups that were still going, while also dealing with their own careers, and making sure my younger sister was alright and taken care of…

- and my Sister, needing to find ways to not feel like she’s being forgotten amid the drama. It seemed like everyone was focused on her brother, but she was thirteen at the time, just becoming a teenager and trying to find groups that are safe and can support her with healthy friendships

- and my Friends, I mean, here’s this person they’ve known for years, and now he’s out of the hospital, but acting all weird and behaving in a way that’s just not right some of the time, or a lot of the time, and they don’t understand what’s going on.

And then, turns out, everyone also had difficulties that had nothing to do with me. Jobs, school, family, romance — Life Happened, and it turns out that, for most people, I wasn’t the center of everything.

Along with this, I realized how much other people didn’t know about my story — how many people didn’t understand that rehabilitation goes on for years after brain injury. Truth is, the people around me were looking at someone whom they had known and loved for years, but now this person was acting really different.  Yeah, they figured it had something to do with brain injury, but they didn’t know why or how.  For me, as the survivor, I was just trying to act normally, but it didn’t seem “normal” to everyone around me, and it could get really uncomfortable.  So, when I asked my family and friends what happened from their perspective, turns out they viewed everything in a manner that was completely different from how I viewed myself. It’s silly how obvious this is now, but turns out we all had different stories.

And that brings me to the second point of my Big Idea — that storytelling can help with reintegration into the community after brain injury. Now, much like providing inspiration for fellow survivors, this is also about the conversation that stems from storytelling and works in two ways.

First, there’s the storyteller-survivor telling his or her story to the community to inform the community about the experience of recovery after TBI.  This is important because people need to understand that recovery takes months or years of focused rehabilitation after a survivor leaves the hospital or rehabilitation clinic; also, community members should be made aware that a survivor will never return to being “the same as before” – most people simply do not know either of these facts.  And it is not the communities fault that there is so little understanding of the realities of recovery because the idea of a complete recovery is something that is consistently fed to us by the media — TV and movies almost always show a hero surviving this huge, massive explosion-collision-calamity, and they’re knocked unconscious — head trauma —go to the hospital, and the hero wakes up a few days or weeks later and everyone’s gathered around — “Oh my God, you’re Alive! You pulled through! How do you feel?”

“Me, I’m…uh, I don’t remember what happened...everything’s kinda a blur...wait, wait, hold on...okay, now I’m ready to go and Save the World.”

And often in the news, when there’s a story about head trauma the focus of the coverage is on whether the person lives.  Living is most important, no doubt, but the story about the long gruelling recovery process is generally passed over and just ignored.  As an entertainer, I sort of understand why this is done, because the story rehabilitation after brain injury doesn’t make for good TV — it’s a slow, arduous process that usually doesn’t have the “Big Show Event”, finale, or grand conclusion.  Instead, recovery just keeps happening, getting a little bit better, day by day, week by week, year by year — and it’s not good TV.

But, again, this is why stories about recovery after brain injury must be told, so that communities can have a better understanding of the extended process of rehabilitation after TBI. With this knowledge a community can better prepare for and adapt to the needs of a survivor.  People can understand more about the long process after leaving the hospital and be more prepared to accept and support a survivor in his or her journey

Now, to be clear, I do not view this part of my Bit Idea of using storytelling as an immediate solution for any one person — it’s not as though a survivor can emerge from the hospital, become a storyteller, immediately tell the story as part of rehabilitation, and then everyone in the community will say, “Oh yeah, you know, I get it, let’s all behave differently,” – that’s not going to happen.  But if more survivors share stories of recovery, it provides more reference points in the world that people can look to for information.  It makes information about the extended process of recovery something people in a community might have already heard about. 

So that’s an extended hope for the future, a way that using storytelling to gather more examples of recovery can help a larger community, but like I said, this part of my Big Idea is about the conversation.  The other way storytelling helps with reintegration into a community is when a storyteller-survivor is preparing the storytelling piece.  During this preparation, if done in the most fulfilling manner, the storyteller will talk to friends and family who were part of the experience, and this will help the survivor hear new perspectives on his or her own story.

It’s easy for the story of recovery to seem to be all about the survivor.  Especially for a survivor, it can easily seem as if everyone in the world is focused on your recovery.  This can cause an ego-centric focus to develop, where the thought process becomes, “This is what I did, this is what I went through, and everyone else was just around me.”  The struggles of countless other people who are affected by the injury are forgotten.  Taking the time to speak with and acknowledge the journey of other people can make it easier for a survivor to find new ways to return to the community.

Before brain injury, a person generally had a way of “gelling with” or interacting with a community that was just known, but when brain injury happens this unconsciously understood way of working together comes apart.  After the injury, a lot of times all the different sides are trying to fit things back together in the same way as before, but the pieces have changed, and this can cause clashes and discomfort – no one is happy. When preparing for a storytelling, the survivor is able to look at the events with a new perspective and listening to people who were part of the recovery process, allowing the recovery to be seen from a new angle.  This can help to show the new ways in which the survivor needs to interact with a community and can allow people to come together and find more inclusive ways to support healing.  It’s important to remember that brain injury doesn’t just happen to a person, but it happens to a community.

Back to the story of my graduate thesis – now I have three piles of stories: those from fellow survivors that I relate to, but stories that I’m not in at all; from friends and family that I was a part of, but I don’t really understand the experiences in the same way; and personal half-memories from the time in rehabilitation and returning to the community.   It’s a lot of information, but it didn’t all make sense to me yet, and I needed to put it all together to make a unified performance piece.

I decide to lay out narratives I had.  Literally. I write a short script for each story-memory — those collected and the stories I remembered, and then worked to split the longer memories into even smaller moments by trimming each memory and shaping it as a short anecdote depicting an incident in recovery.  Once I the stories had been documented, I took each snippet and tried piecing them together with the goal of discovering a way in which they can be combined to create a fuller storytelling piece. It’s like having a table puzzle spread out before me, and I’m trying to put all the edge pieces together so that I can see the beginning a structure of what’s eventually going to be the larger picture.  And this worked, as I found a way to arrange an outline, and then took all the pieces left and started inserting them in a way that filled in some of the empty space.  This worked, and the story began to form, but there were still big chunks of the puzzle where I still couldn’t see the picture — parts where I still don’t understand what happened, but decided that I would come back to that later.

Reflecting on what I did have, I started to see that my storytelling piece needed to be about change — especially after talking with my family and friends who witnessed big changes in my attitude – and I saw that this storytelling needed to address who I was before the injury and then who I am now, so I made the goal of the piece to provide an explanation of how I made that transformation. But this had the side-effect of causing me to ponder, “Well, okay but Who am I?

And to have this question come up was hard, because it took me back to the memory of how variations of the question pounding on me when I was in early recovery — questions of self-identity — questions that I had never really dealt with but that I had stuffed into one of the closets of my mind, one of those closets where you shove everything that you just don’t want to deal with — but now, as part of my thesis project and by looking at all the gaps in the story, turns out I had to open up that closet and all those questions just came crashing down on me again.  I had to deal with what fell out by picking apart each question so that I could successfully fill in the gaps of the story.  It was hard, but I figure, “Hey, I’m a storyteller, this is what I do.”  The requirement for my master’s thesis project was to create a performance that an audience can follow and understand, and as part of that, I had to create a story I understand.

With this mind, I began to construct a story that filled in what I didn’t understand.  The story had elements of fiction, because I had to invent some events to fill in the gaps, but it was in no a fantasy.  Instead, I did my research and learned events that could have happened and logically explained the story segments that I didn’t have enough information to understand.  Then, with these options, I made choices about what would fit with my situation and created a plausible story about the events of my injury and recovery that answered any questions in my head.  With the intention of creating a storytelling piece that an audience could understand, I first had to answer any questions of self-identity for myself. I had to acknowledge and accept who I became after my brain injury, and more importantly, appreciate who I am now.

Which brings me to the third part of my Big Idea — that storytelling can help with the acceptance and appreciation of self-identity after brain injury.

Getting into this claim, we first need to establish what is self-identity, because that’s a pretty heady concept. 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.?

I hold that it is a person’s story that is his or her self-identity. The changes that happen in a person over time can be accounted for because there is a consistent storyline that accounts for these changes happening in a gradual manner.  In some cases there may even be a specific event that leaves a mark on the storyline of a person and accounts for a definite, somewhat monumental change, 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 it is not a matter of opening your eyes and wondering where you are — we talked about this earlier — but whatever they show in the movies is not how it happens for most people. It’s a matter of already being awake and slowly memories begin to stick again — 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 caused the changes that put me in my current condition.”

Now, that’s how it happened for me, and from my research and interactions, I suspect that’s how it happens for a lot of survivors — you don’t sudden learn, “Oh my God, I have brain injury!” but you come back to awareness with your brain injury being an understood condition.  However, as I was working on this speech, I realized I don’t actually know the facts about that — there’s nothing I can cite with that information — so I am curious what the experience is for other survivors. So, to all the survivors I ask, was there any moment of revelation for you when you came back after brain injury? Or was it more like I described — where your awareness returned slowly and your condition was already understood.  Please feel free to leave a comment about this, as I am very curious.

But returning to the topic, regardless of how the awareness returned, when it returns, changes have happened.  To add to the confusion, a lot of times these changes won’t be recognized at first — everyone is focused on the survivor being alive, so that any changes that do come out may simply be overlooked or marked off as something that will go away soon. And then the survivor continues to heal, eventually returns back to his or her home community, begins the return to a normal life, and the survivor is trying to act normal but...

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 behaviours that have been developed over years of actions and habits and gradual changes that occur as a result of life events. Then, when brain injury happens, all the behaviours in this “bag” are swapped out for a different set of behaviours there are new behaviours similar to your previous set, but more extreme and less filtered. 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 with these new behaviours, or may even be downright offended. This new set can even cause the 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 and...and there is no series of events on the personal timeline, 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 — is able to fill in that big empty gap of memory and to create an understanding of what happened.  While it is better to do research by interviewing people who witnessed the accident and recovery, there will still be parts that no one tells you about, parts that the storyteller/survivor must create and fill in with an imaginary, but plausible explanation.  When you’re making a storytelling piece, you’re creating an understanding of what happened that allows you to be who you are now.

In my experience, when I was working on my storytelling piece it was a powerful transformation to come to this understanding. Brain injury was no longer an event that just happened to me, but by turning it into a story, I was able make brain injury something that I had experienced, recovery something that I am still experiencing, and all of it a part of Who I am Now.

Now I’ve laid out this Big Idea — how storytelling can be a beneficial tool for rehabilitation after brain injury and I hope I’ve given you an idea of what my thoughts are and what I hope to continue to study in my life.

All that said, I’m going to return to the quote I told you hang on to at the beginning of this speech — by Maya Angelou,

“There is no greater agony than bearing an untold story inside you.”

As a survivor, this quote speaks to me in many ways.

Because there’s the agony of keeping your story inside you because you think no one will understand it — how alone that makes you feel. And how freeing it is when you finally share that story with other survivors — people who have experienced the same thing.

Then there’s the agony of trying to return to a community where every person has a different story and is looking at you differently, and your trying to put these stories together but nothing is fitting right.  Then getting the chance to hear the stories of the people around you, and perhaps letting them hear more of your story, and how this leads to a happier and healthier return.

And there’s the agony of not having the complete story — not having Your complete story — not knowing who you are. But then there’s the release when you take the time to put your story together in a way that lets you understand your injury as something that experienced and as part of what makes you — You.

To finish up the story of my thesis project, the piece I finally composed and performed became titled, Who Am I, Again? a verbal collage of stories about severe traumatic brain injury.  For this piece I used parts of the story of my recovery as a frame and then pulled in stories from fellow survivors, family, and friends to highlight shared experiences of recovery that occur after brain injury. And the performance was a success. Not only did I graduate, but for the initial performance I was able to invite the residents at the Crumley House and share my interpretation of their stories, and everyone seem to love it. To be able to share that experience was a powerful honour.

And it turns out that the performance was just a step in a larger story — because I continued to perform about brain injury at several locations around the US for a couple of years, which led to me writing a blog, which eventually led to my book that has brought me to where I am now, continuing to write and refine my thoughts about storytelling as a tool for rehabilitation.  It’s all part of a big story, and it makes me think of something my first storytelling mentor told me:

His name is Karl and he has a storytelling company that I worked for in the summers as a student, and one day he called me onto the porch of the theatre where we performed, and Karl said, “Lethan, you know, storytelling is looking at a moment from a story, and deciding why it is beautiful.”

So, I hope this talk inspires you to look at your story — the story of recovery from brain injury or the story of a caring for someone you love — and I hope you look at some of those moments, maybe even the hardest moments, and decide why they are beautiful.

Okay, now we’ve gone through the theoretical, philosophical part of the speech — explaining the Big Idea — and you may be thinking, “Those ideas make a lot of sense and storytelling could be a really helpful part of my recovery — but how do I do that?” For this final part of my speech, I’m going to lay out a few things you can do to start planning how you want to tell your story of recovery. Keep in mind, we only have time for some starting steps today. I do intend to follow up with some more publications outlining this process, so please do follow my blog and I do hope to write a companion, “How To” book so feel free to follow me on Amazon — but right now I’m going to share a few steps that can help you begin the process of sharing your story.

The first thing to do is to find a group of people with whom you can share your story. As I mentioned at the start of this speech, stories about recovery are really hard for an unprepared person to listen to, so it’s important that you have people who will devote the time and attention to hearing what you have to say. This groups can be made up of family, friends, therapists, fellow survivors — anyone who is will to share some time with you. You are welcome to open your performance to the public, but you don’t have to.  The presentation can also be a private event among people you trust, it is entirely up to you.  What is important is that you do have some sort of audience, because having an audience creates the requirement of having other people understand the story. If you’re composing the story for just yourself, there can be overwhelming emotions that cloud the reality of what happened. I’m not saying ignore these emotions, but by forcing yourself to compose a story for other people helps to pull the author out of the emotional memory and focus more objectively on what happened while still acknowledging emotions that were present and how these affected what happened.

I also want to be clear that, when you perform your storytelling, it does not necessarily mean that you need to share a memorize piece. You need to plan to do what is most comfortable for you, and if you like memorizing a script, that’s fine, or maybe you want to have an outline of the story that you follow but the words are spontaneous, or maybe you want a paper in front of you that you can hold and recite your story to an audience. I don’t think that how you tell your story is important.  What is important is that it is spoken in a live performance so that you can be a witness to the journey of that experience in your head being translated into words and then passed through the body to be released into the air as language that flies and lands among the audience, and then you can see how these words affect other people. It is powerful to know that your story is heard and understood.

Once you have a planned audience, set yourself a date for the performance. There is no requirement for how soon or how far away this date should be, but setting a date gives you a deadline that you need to meet, and having a deadline helps to ensure that the performance will happen. I know that I need deadlines or else I’m never fully satisfied with my work.

That said, while setting a deadline is important, understand that if you need to extend your deadline for any reason, that’s also okay. Life happens, things come up, and sometimes a deadline you set for yourself is a little too ambitious. Give yourself a hard deadline to follow, but don’t be angry if you need to adjust. A deadline is intended to help and motivate you, not to be a hinderance.   Also, for your first deadline, I recommend giving yourself at least 4 months to work, and it is probably better to have at least 6 months. This is a long project, and part of the goal of this project is to give yourself time to really explore the memory of your early recovery and see what you can learn from it.  Deciding how your story is beautiful can be a difficult task and will require some serious work.

I recommend stating with those steps because it gives you a clear goal to meet. After that, you’re onto the creative part, and to get those creative juices flowing, I start a reflective journal. Write down your initial thoughts about this project, and start reaching into your memories, writing down anything you can recall having to do with recovery.  This is not for a performance script and does not need to be understood by an audience, so for this initial part of brain storming, an audience understanding is not required.  This is just for you.  You may want to share with someone, and that’s fine, but it does not need to be the goal of this journal.  Write the memories however they come to you. Get your thoughts out, and see if they bring up any other memories. Just start writing and see where it takes you.

Along with these journal entries, I recommend talking with other people — talk with fellow survivors, or family and friends who have been part of your recovery process — share memories and thoughts, and then journal some more.

You may have figured this out already, but I think journaling is a really important part of the early creative process. This can help you be aware as your story changes, and by going back and reviewing some of these journal entries, it can help you to get over some creative humps that are causing trouble in the creation of the storytelling.

From there, there are no boundaries to how you compose your piece. Again, I remind you that it is helpful to remember that you are composing this for an audience, so you need to be understood, and for that reason, I do recommend you schedule time to rehearse with a friend or mentor at least once or twice in the creation process, but it could happen much more often.  Work with someone you trust will be honest about your art, and use this person to make sure that your story can be understood.

I also recommend that you play.  Play with your memories and the material you wrote as you work with on the storytelling. Try speaking with a new voice — try moving in a new way — try rearranging the scenes— try inserting new scenes... remember that while you’re trying to create a performance to share with other people, part of the growth in this project is what you can learn along the way.

Those are just a few starting ideas of how to do this sort of project.  I’ll be writing and publishing more as I have the time, so please do stay in touch through my blog.

 

A Christmas Revelation

  I am alone and in Malaysia this holiday season due to a series of circumstances that are irrelevant to this article, but I want that to be understood as context while I relate this story.  Know that I am healthy, safe and trying to remain optimistic about future plans, but simply put, it sucks.  I did share a internet video chat with my parents and sister in the States and my wife who is currently in China, but I wanted to mark the holiday by doing different, so I decided go for a hike early Christmas morning, and using the power of the internet I found a large hill/small mountain named Broda Hill that I could visit.

Taking a taxi to the base of the park, I arrived just as the sun was beginning to stretch and promptly walked to a ticket entrance where I learned that some of the steeper trails had fallen into disrepair and not all of the scenic areas were open.  This meant that, according to the official statement by the workers behind the ticketing counter, I should not even try to reach the top of the mountain, the spot that contained the views that had been advertised.  I could still trek through the jungle and see whatever views were there, and the ticket takers promised that there would be spots for pictures, just not the panorama I had intended to see.  Having already paid the taxi for the commute, and with no other plans, I accepted the restrictions and continued with my planned hike.  My philosophy is generally to say ‘yes’ to any event and attempt to appreciate whatever occurs.  For the most part, this has resulted in good choices, but you never know, but I try to aim forward because I’ve already seen behind me.

And the hike was fine.  There were a few other people on the trail that took me uphill, but for the most part everything was suitably quiet.  It was pretty.  I was walking through the mildly cultivated jungle, marching along a steep the hill side, finding foliage framed views of Malaysian farmland lit by a morning tropical sun that was resting atop the mountains on the other side of the valley.  

        Having barricaded myself in an apartment for most of the last month with the aim of keeping safe from disease, I enjoyed the fresh air and the packed dirt paths, but was disappointed that I wouldn’t see the sites from the top of the hill.  Actually, let’s be fair, “disappointed” might be too strong a word, as the melancholy that came from the lack of a holiday mood brewed apathy more than anything else, so I wasn’t really disappointed, but I did have a strong sense of, “Eh, well that sucks.”

I walked until I couldn’t find a trial, and then turned around.  It had been maybe an hour and a half, but the sun was now fully in the sky and people were beginning to populate the path.  Finding a side trail that went uphill on the right, I decided to explore, and soon this turned into a climb up the mountain.  I was moving toward a peak that may be officially closed, as advised by the ticketing workers, but I observed several groups attempting to navigate a way up the steep rocks.

I thought, “Why not?” and began to climb.  Carefully setting each foot before any movement and relying on my hands for support, I was able to begin the ascent.  It was tricky, but a tinge of excitement began to percolate in my body, for this was something new and presented what could be a Christmas challenge.  The rocks grew less stable, the ascent  steeper, and when I was about a third of the way up I stopped to refresh myself with some water and decipher my next steps.  Small pebbles coated the larger rocks, making the stone slick as ice and near impossible for my road-running shoes to grip any surface,.  There seemed to be two potential routes up the hill, right or left.  I’m right handed, so I attempted the right path first — it looked steeper, and would require more work with my hands, but it also seemed to have fewer rocks and would create less danger of slipping.  The gaps between the rocks, however, were too large, and after about fifty meters, I turned around.  I might have been able to keep going, but decided to at least look at the path on the left before deciding what course to take.

I found the same ledge where I could rest and survey the situation.  As I recouped with more water, I watched as a group of young men, perhaps 15 years younger than I, came from the top of the mountain and navigated their way down the steep slope.  I was trying to see the path they took and consider if I might follow it in reverse, when I heard the slick sound of rock on rock and watched as one of the hikers lost the grip with his shoe and began to skid down the mountain with an avalanche of pebbles skirting after him.  Now, he did not seem shocked by his slip — may have even planned it — and stayed calm as he surfed past me, going down the mountain for another 10 to 15 meters for a total ride of about 40 meters.  His cool and calm was impressive, but when his feet found a solid grip again, it felt like everyone watching nearby breathed a collective sigh of relief and his wide eyed friends let out a nervous and relieved gaggle of laughter and then returned to focusing on how to make their own, more cautious decent.

There was never any serious danger.  Everyone was fine and the “great stone slide” will likely be forgotten by the youthful hikers, but I stayed on my safe perch and began to run some numbers.

First, I would probably be fine going up the steep hill.  Definitely at least a 50% chance that nothing went wrong — no, probably better than that...at least 60%, maybe even a 70% likelihood that I could climb the steep, mountain-ish hill and nothing of note would occur.  Assuming that is what would happen, I mount the summit and witness a beautiful panorama from the peak.  No doubt, that would be...nice.  I had seen internet previews and didn’t expect a mind-blowing or life rejuvenating experience, but it would fun.  There would be a good view, I would pause, sip water, ponder the majestic quality of nature while I caught my breath, look around and realize I had no one to share the moment with, and begin to climb down.  It would be, eh... nice.  And I am in relatively good shape, so I would probably be if fine — I’ll revise my numbers and give it a 75-80% chance that I’m fine.

But then I thought about the alternative.  According to my presumptuous calculations, there was a 20-25% chance something might happen.  This something might not be THAT bad, but...I mean probably not, but who knows?  It could very well be that in some possible future there was a chance that I would also surf down the rock, but instead of using shoes with improper tread, I would use my face — not likely, but not impossible.  And there was also a chance that I might drop my cellphone down the side, loose my water, bust my jeans...  Or I could ignore this risk and prove myself...to myself...in a solipsistic ego stroke...and I would see a view would be...eh...probably nice.

I’ve had the privilege of seeing countless “nice views” in my life.  Sometimes these views come from a long hike in through a forest and other times from a short stroll around town, but regardless I have seen thousands of “nice views”, and probably hundreds of truly spectacular landscapes.  What’s more, I hope and expect to see as many or more such sites in the future, as long as I don’t prematurely end my ability to take in such experiences by surfing down a mountain side and not sticking the landing — this is especially true when I’m stuck in a country without insurance.  The climb would possibly lead to one more new, “nice view” that I could add to the stack of thousands, or I skip it and be assured safety.  I made a choice, and did not to climb.  I would have probably likely been fine, but did I need to take the risk?  The future awaits.

I include this story in my blog about survival because it is an example of recognizing limits.  As survivor, I try not to let anything stand in my way — I want to push my abilities to their fullest, and no one can say that brain injury has limited my life experiences.  More importantly, I push myself because I don’t want to consider the idea that my injury has hindered any of my choices.  I want to know that I am fully living life.  This is important, and I encourage all survivors create, face, and attempt challenges — push yourself to do more than you did yesterday, try what hasn’t been done, see new things, but realize some tasks are just too dangerous or dumb to do, and know that not doing everything does not mean you have failed, it means you have thought about it.  That’s how I looked at my decision not to climb the mountain — I didn’t have a safety network, I didn’t have the gear, I didn’t have the experience, and I might have probably been fine, but I can forgo one nice experience to ensure experiences in the future when I am better prepared.

This revelation was my self-given Christmas gift.  I’m getting older — nearing 40 — and while my body might not be able to bounce off rocks with the elasticity of youth, I will accept the wisdom that I’m finding as a supplement that previously imagined invincibility.

(The photos added are from that hike.  The first is from a safe spot on the trail, the second is from my perch part way up the climb — it doesn’t really give a full perspective of the difficulty, but you can see the slick pebbles on the rocks.)

Predictions of Rage

  Rage is an issue for me.  It has been for all my life, but especially since my brain injury.  It’s taken a lot of work, but now I am at least conscious of the dangers rage can create, and I am actively working on finding ways calm any impulses, yet there have been times when it seems that I foresee when a rage will consume me — as if I can predict the future.  It’s a vision in my head that dictates what will occur to ignite my temper.  I do not have this sort of vision often, anymore, but when such a vision does find me it will almost inevitably come true.

Since I’ve recognized that this premonition occurs, absurd questions have popped up.  Am I psychic?  Can I predict the future?  Is there any way to use this talent to make some money?

Recently, a rage struck me.  It was not in anyway dangerous — no one was harmed, no relationships were damaged, but I did used crude, immature language toward another person because the company that person worked for was attempting to cheat me out of several hundred US dollars — I ordered a product that wasn’t delivered and the company acknowledged that the product wasn’t delivered, but they were not refunding my payment.  There was legitimate reason to be angry.  As the situation began to play out I had a vision, and I knew exactly what I would say to this person if they didn’t adhere to the guarantees that had been promised.  I envisioned exactly how the rage would strike and what venom would spew from my tongue.  This was repeated many times on the movie screen of my mind, and at times it would even inspire me to vocalize my anger as I expressed myself to the walls of my apartment with passionate tones, as if I was shouting at the villain while watching a TV program.  And it was very much like criticizing the TV because my vocalizations had no effect — there was nothing I could do to stop it — as it was a vision of what would occur.

So when the worker contacted me to give me bad information, as predicted, and reported the company’s hesitancy in refunding the payment I made, and my vision came true.  The words that had been screened in my mind dozens of times were recited with exactly the same vehemence I had foreseen.  My vision came to pass and I verbally raged at this person.  The immature spite that spewed out didn’t change anything, for better or worse, but it did stain my name.

I am ashamed and embarrassed when a rage strikes.  As I said, I am working to calm these impulses, so when this happened I asked, why?  How could I predict this?  If I had foreseen such an action, why couldn’t I stop it?

In the hope of calming my anger and deciphering answers to my questions, I went for a run.  It was a terrible run, for anger had already drained my body of energy, but as my feet pounded the pavement, I pondered through possible reasons for my loss of control.  Again and again my feet hit the road and again and again potential reasons scrolled through my mind.

As I said, the run was not good, but I did run, and I was able to do some sort of run because I had done it before.  Again and again.  It is a habit of mine.

Again and again.  The reasons for my rage played in my mind.  It was a habit.

Realization!

My “vision” had been playing continuously in my head.  Again and again.  I hadn’t predicted my rage, I had rehearsed it.  My mind had used what was known to anticipate what would likely happen, and then concocted a response based on my history — I had a history of rage, so it assumed I would rage.  With this decision made, the scene that might happen was played with obsessive repetition and ingrained itself in my memory.  Therefore, when the reality revealed itself to be close to what had been predicted — the introduction to the scene — I knew exactly how to act in order to make the “vision” come true.  I said my lines, flailed my arms, and appeared as an ass.

I don’t like that, and my recognition of this tendency allows me to make a choice.  When my mind predicts a shameful response to some situation, I must be aware, and instead of accepting the scene as a prediction, I can decide what alternatives might occur.  How can the scene play out in a manner that doesn’t cause disgrace?  This is not to suggest that I ignore my anger, but instead of allowing it to fester and evolve into a grotesque rage, I can create a scenario that expresses my discontent in a reasonable manner.  By allowing this passive response to play on repeat in my head, I can rehearse what will happen, and through rehearsal habituate this sort of response.

I can make the choice to change my “visions”.  Sure, they will be less dramatic, but this will allow me to live a more joyous, reasonable future, one without moments of embarrassing and damaging rage.

I share this experience because I have heard other people comment on how a situation, “played out exactly as terribly as expected.”  If this sort of premonition ever happens to you, I challenge you to face that prediction and try to expect something else.  Rehearse a different set of actions in your head and see if you can choose a healthier, happier way to live.

My Journey to Appreciation

  The last entry shared the difference between accepting and appreciating one’s self-identity.  As a survivor of 21 years, I have reached the point of appreciation of my identity after brain injury, but it was a long journey.  This article will share a summary of my journey to appreciation in the hope that it can provide inspiration.

When the injury happened, I was a high school senior (12th grader) and was already at a transition point in my life.  Filled with youthfully ambitious pretension, the plan was to launch out of the small town I felt stuck in and shine my talent upon the world, and when brain injury occurred it delayed my launch date, but I refused to give up the momentum, figuring that “a bump on the head” wouldn’t hold me back.  It was temporary.  There was a plan prior to the accident and no reason why it couldn’t continue.  I was Lethan — the actor — and would move on to at least attempt, and hopefully do, great theatrical things.

But did I still want to be an actor?  Didn’t matter, and I didn’t even explore that question.  Why should I?  I had diligently worked at this craft for half of my long eighteen years — that’s almost a decade of my life (please do read the sarcasm)!  It was what I was made to do, my plan, nay, it was my destiny!  I was too strong to let this setback damage my core drives, and theater would always be my thing!

I was in denial.

It’s important to recognize that this wasn’t a denial that the brain injury had happened, but I refused to acknowledge that it was a life changing event.  I insisted on viewing it as a blip, a skip, a bump in life, and I convinced myself that everything would be back to normal once I healed enough.  It just might take a little bit of time.  I accepted that the injury occurred, but refused to recognize that it had permanent effects.  

And this view was encouraged by other people.  Friends, teachers, acquaintances spouting words of encouragement — “Don’t worry, you’ve got this,” — “Strong person like you won’t let this keep you down,” — “You’ll be back to your old self in no time!”  I don’t fault anyone for saying these words, as they are what one says to offer support and a positive outlook.  More than that, most believed that the words were true, and that was kind, but gave me false expectations.  I was convinced that I wouldn’t experience the effects of the accident for all my life, that I would emerge from recovery the same as before.

But this is not how brain injury works.  A survivor will almost certainly experience lifelong affects of the injury.  Brain injury causes changes.  I choose these words carefully, and notice that I do not say, “The survivor was changed by the injury.”  The survivor is still the same person, but that person has, and will, continue to experience changes.  My performance piece Who Am I, Again? begins and ends with the statement, “I am Lethan.” I use this phrase because it insists on a permanence of self-identity, but that said, a stable self-identity does not mean an unchanging personality.  The truth is that every person constantly goes through changes in his or her life — discovering preferences, learning skills, forming relationships — all these and more indicate changes, but it is important that the core identity of a person is recognized as constant.  Brain injury causes changes, but it does not change who that person is — I am I.

I emphasize this because learning to adapt to the changes caused by brain injury can create questions about one’s self-identity.  It can feel like qualities that are viewed as a necessary part of a person are either no longer present or have fundamentally changed.  A survivor may even be conscious of these changes, but not want to acknowledge them because the previous quality is a part of how that person has defined him or herself.  This can cause the survivor to cling to former qualities that may have changed as after the injury, and refusing to acknowledge changes may create conflict or stress.

This is confusing, so for clarity, I’m going to explain it again, but in another way.  

We all change over the course of life, and most times this change can be accepted because it occurs in a gradual manner.  Granted, there may be a few times in every life when, in an instant, there is a “big change” that occurs, but most times we can account for the events that led to this “big moment”.  Yet when brain injury occurs, big changes will become apparent throughout the rehabilitation process, but they don’t have the series of surrounding events that add context for these changes.  Sure, after brain injury the reason could be stated as, “Well, you had brain injury,” but often the event of the injury isn’t remembered by the survivor, and its hard for an unremembered event to provide sufficient rational for an unbidden change.  What’s more, if a survivor is told, “Everything is going to be fine and just like before,” as described above in my experience, unanticipated changes can cause greater confusion, angst, and frustration.  This can lead a survivor to attempt to deny that the injury affected his or her life — “Sure, I had brain injury, but I’m fine now.  It was just a bump on the head,” — and by not admitting that these changes happened, a survivor may hang onto habits or tendencies that they remember as a defining feature, even if holding onto such a habit is no longer a positive experience.

As explained above, a habit I can clearly cite in my experience that caused me to deny my changes was my love of theater.  Sure, I still loved theater after the accident, but didn’t have the same passion, had lost some of the onstage charisma, and the drive to explore the art was completely missing— acting had become a thing that sometimes I did, even though I never felt good about my work.  Yet I refused to acknowledge that the need to perform as an actor was no longer a part of who I am.

This did eventually change, but I can’t pick out a specific moment when I decided that I no longer was an actor, as my move from denial and toward acceptance of the new situation was gradual, a change that could be accepted over time.  If pressed to provide my rational, I think it grew from not feeling comfortable among my peers in theater, finding a spectacular team of professors at my university that supported me in alternate subjects, and from just trying new things — but I was eventually able to recognize that theater, well... it just wasn’t my thing anymore.  My accident had messed up my plans and now I need to do something else.

This was acceptance.

I accepted that my accident had caused changes in both my passions and talents, and these changes hindered my intent to be a stage actor.  Now it was time to find something new, and there were many paths to explore — music composition, anthropology, philosophy, sociology, political science, law... Each subjects touched on something I enjoyed, but nothing gripped me the same way theater had — I never felt the same completeness, yet had to accept that the accident had ruined, or at least had changed my relationship with the theater.  After all, I was alive, and this was one of the conditions I had to accept in exchange for this life.

Eventually I found Storytelling, and it became a new passion that was a great joy, but it still felt like a substitute.  Theater was no longer an option, and I had to accept that now storytelling is what I do.  It was a second choice, and one that had to be accepted.

When this acceptance morphed into appreciation is similarly difficult to pinpoint.  In Scene 32 of Who Am I, Again, the character of Larry states his realization that his accident, “...kinda made me who I am today, / and I’m okay with that.”  For dramatic effect, it would be fun to say that it was this interview that inspired my appreciation, but in truth it was several years after composing the piece when the transition to appreciation fully occurred in my being.  What I do know is that the source of this change was recognizing how I could use my experience to help other people.  That the injury didn’t need to be something I attempted to ignore while it hampered daily life, but by embracing the experience I could better learn from what had happened and use it as a base from which to build a new life.  I came to recognize that the knowledge gained from the injury could help other people who are new to the journey of survival, and by helping others, I am still finding ways to help myself.

Being a survivor is a part of my identity, and I don’t need to hide that.  It does not define me, and I will not let it limit me, but I will appreciate the knowledge it has granted me.  This does not mean appreciating the injury, but recognizing what the experience has granted — a rare understanding of life that can be used to can help fellow survivors navigate the murk of recovery.  By helping others, I can find joy and peace with who I am.

I appreciate who I am and what I am able to share.

Those are my thoughts, and I hope they help you.  If you enjoyed, please share this posting and/or leave a comment.