Thursday, January 28, 2016

The Feeding Tube

With so many stronger memories that seem to be riddled with meaning, I’m not sure why this one remains so vivid, but it does bring a smile…

When I first returned to awareness, my mouth was wired shut and I had a tube sticking out of my belly - it was through this tube that I was fed.  I don’t remember not being able to communicate, but I’m sure I was severely limited as I don’t see any reason to feed me directly to my belly unless my mouth was wired. - you can see the feeding in the below pic - but that’s not what I remember.






What I do remember is being fascinated with this piece of medical technology, and being proud of my tube - showing it off in the way a ten year old boy displays the grotesque but harmless scrape scrape he suffered.


I also remember the tube being removed.  As I first returned to awareness, the tube was present, and when it was removed, I remember expecting to need to return to the operating room, or at least go under some sort of anesthesia.  Instead, two of my favorite nurses entered the room, one held me down, the other pulled on the tube, and out it came - accompanied by a satisfying “Pop”.

That was it - even at the time I was flabbergasted by the absurdity and simplicity of the procedure - tug the tub and it pops out.  I still had to drink my meals, but finally there was a sense of taste that came with the eating process.

A strange memory, but one I’m glad to have.

Wednesday, January 27, 2016

Memory of a Sensation

I’m lying on my side at Magee Rehabilitation Hospital in Philadelphia.  This isn’t long after my memory has started to return, and I’m beginning to recognize there are aspects about my being that have gone through some pretty major changes - short bouts of depression would wash over me.  Confusion was the most consistent emotion, and the fact that this confusion was so prominent was what made the most sense.

Everything had changed.  I didn’t remember it changing, didn’t choose to go through it, couldn’t even really point to the event that caused it - I knew I had been in a car accident, but the accident was completely wiped from my mind.  I just slowly woke over the course of a month, and wasn’t what I worked my life to become.  What’s more, I didn’t have a clear idea of what or who this new self meant.  I was just different - was I even Lethan anymore?

That question hit me hard - was I Lethan?  There were many times when I settled into that question and couldn’t get away from it.


But in this scene, as mentioned above, I’m lying on my side at Magee Rehabilitation Hospital.   This barrage of difficult and painful questions is torturing my mind and my spirit is low.  I’m ready to give up.  I’m just tired, and I’m ready.

And I sense something come into my room.  Though the window.  I’m on the 5th floor, and the windows barred, so I know nothing is actually coming in, but something comes in, moves over to my back, reaches out, touches me - its not a physical hand touching, but it is physical - a physical nothing.  And I sense this essence move into my body, filling me like river filling an empty quarry - and I feel…

Love?

Hope?

A future?


That’s it, a future, a next step - not a solution, but directions to a path that I’ve been called on to travel.

Just like that I feel this thing remove itself from my body - I feel a physical departure and it seeps out through my fingers, and that sense of direction is gone, but the memory of it remains.  And I remember that moment, so I didn’t give up.


I discuss this moment in storytelling, and I think its an important moment to return to because of that profound memory of feeling a sense of direction which kept me going.


What was it that touched me?  I won’t rattle on about my philosophies here - there are other entries for that.  All I will say is that it was an event, and I do remember it, and I’m still trying to pick out the right path that was suggested in that moment…its just a memory of a sensation, so the details are tricky to pick out, but knowing that path exists motivates me to keep searching.

Reunion with Friends

A short memory - the summer before my accident, I attended a select artistic camp called Pennsylvania’s Governor’s School for the Arts.  The experience was wonderful, and I formed dozens of friendships that we swore would never end, but all eventually dissolved as the inevitable reality of growing up occurred.  At the time of my accident, however, the friendships were still strong and the friends connected from various spots in Pennsylvania and made a trip to see me in Philadelphia.


What I remember most is the pure joy at seeing everyone.  My life had changed, but that didn’t mean everything from the past was lost.  Seeing my friends from Governor’s School helped me to realize that.  They came to visit me in the hospital, and I remember filling the lounge where we gathered with laughter and smiles.  They all felt sad for my situation, but that didn’t mean we couldn’t bask in the joy of reunion.


What i take from this memory is the refusal to be depressed.  I did have depression at many times in my recovery, but I’m a performer so I didn’t want to show this - a sort of “fake it till you make it” philosophy.  While some of my positive attitude was falsely put on, by saying I was doing okay helped to convince my body that I was okay.

I don’t mean to sound overly optimistic or to belittle pain, but with this entry I want to encourage a smile.  As I write this, I am torn because these words do seem trite or cliché, but I also remember that by saying I’m getting better and I’m going to work through this, I made those statements a reality.  A positive attitude and insistence on smiling exploded any luck I had into an even fuller recovery.


Monday, January 25, 2016

Change

This entry takes a slight departure from the usual posting in that I’m going to write a little about what’s going on now in my life, as opposed to the past, yet the topic is still relevant when talking about TBI.


We are looking at change.

I have been living and working in South Korea for the past several years, and I am fortunate to be in a relationship with an amazing Russian woman, Anna, who I met here.  We have lived together for the past year, but recently (last Sunday) she had to return to Russia for financial reasons.  Our relationship has stayed strong and we will reunite and teach in China after I finish my current contract, but this situation has caused a big change.  I recognize this change is not terribly drastic - there are countless changes that have a far deeper effect on a person - but I find it interesting how this change makes me think on my time in early recovery from Brain Injury.

As we tumble like a rock through the avalanche of existence, we are inevitably going to be chipped and scratched along the way - events that change our surface, our very shape - yet we retain the essence of self.  As events hit, they can have a monumental effect on how one lives his or her life, and often these impacts seem negative, but by holding onto the essential truth of self-identity, one can change what begins as a negative experience and make it positive.


Before my accident, I had my life plan - I was going to be an actor.  I was good, probably not as good as I thought I was, but I had experience and was eager to learn more.  In my all the communities I was a part of, I was “Lethan the Actor”.  After my accident, however, I fell out of the theatre - my passion was drained and my self-criticism was rampant.  This twisted me in some weird ways - I remembered who I had been as an actor, and I wanted the consistency in self-identity, but I also wasn’t feeling committed to the stage.

This struggle with identity, though usually quiet, continued for years - my mind trying to squeeze back into the actor’s outfit, but never finding the right fit.  I knew I wanted something to do with performing, but was also learning that being an actor wasn’t the right path.  To deal with this dilemma, I pushed myself to open up my options, exploring Anthropology, Political Science, Music Theory, Creative Writing, Philosophy - and eventually discovering Storytelling.  Some may say that Storytelling is just like acting - that I never really left the stage - but I disagree.  Both are performance arts, but there is a significant difference in the delivery and composition and I could outline these differences in an essay, but I really don’t think that’s important here.  What is important is that I left myself open to change, and I’m grateful that the change has been in my life.  If I hadn’t had my brain injury, its possible that I would have remained on the actor’s path and may have even been successful - at times I still regret not feeling drawn to that path - but the life I remained open to gives me pride as a storyteller and I am thrilled to be exploring this less known art and seeing what I can make of it.

Bringing it back to my current change, life has caused my girlfriend and I to live a few countries apart.  This is not an easy separation and I am eager to be with her again, but my goal is to make the most out of this change.  The situation has changed, now its my job is to discover how I can make the most out of it.  That is the goal with any change - recognizing and embracing changes in situation that make us stronger and allow us to reach our fullest potential.  The accident disrupted my world, and I will never say the accident was a good thing, but by accepting change a unknown world opened up to me, and I am grateful for the life that came to me.

Saturday, January 23, 2016

Now with pictures

As you can see from the top of this page, I have been fortunate to have some pictures from my recovery that I am able to upload.  I will share these pics gradually as I am able to meditate and reflect on the memories and emotions they bring up.  Already these pictures have hit me in some unexpected ways, and I will be interested to hear your thoughts.

The on picture I have uploaded so far - the picture at the top of the page - is my sister comforting me in Geisinger Medical Center, the first hospital I recovered in.  More thoughts to come.

Friday, January 22, 2016

Flirtatious Romance

There was a strange romance while I was in the hospital - or at least a hint of a romance that was not actually in the hospital, but it occurred while I was there.  It began prior to my accident, I had been hanging out - casually dating - a girl at the school in the district next to mine - an innocent flirtation more than anything.


As it happened, her mother was one of my nurses at my first hospital - though I don’t remember this part of my recovery - and once I was in Magee Rehabilitation, I don’t remember who initiated it, but the flirtation continued and we would talk on the phone almost every night.  I remember having feelings for her, but at the same time not caring - I think I thought of her as my girlfriend, though we never proclaimed it as such, and I felt no real attachment.

As I returned from the hospital, I remember her coming to my house, sitting next to me on my futon bed as we just sat there and talked - the bedroom doors open for a chaperoned visit.  Still in my neck brace and my face stuck in a confused clown’s smile, I tried to hold her hand, and she wasn’t sure about that, so she pulled her hand away, and that was okay.


And its a strange memory because I don’t remember any more than that - I think she left my house soon after - but that image is in my mind, like i’m watching it through the open kitchen door - sitting on the red futon, me smiling, she uncomfortable, music playing, an uncertain laugh from both of us.

After that, she disappears from any memory - I don’t know her thoughts or how she felt, and I sometimes wonder what they were.  The strange thing is that I never recall feeling any loss as she disappeared.  There were a few moments in my mind when I recall wondering about her, wishing we could be a couple, but those were just momentary slight depressions, quickly dissipating when something else caused a distraction.  I think, more than anything, I juts wanted to be a normal teenage boy, and having a girlfriend seemed something that would be normal.

Despite her quickly vanishing from my life when I returned from the hospital, our romance was a boon in my recovery.  While it existed, being able to talk and share in a coquettish, fantasy romance granted a hint of normalcy as I healed.

She and I didn’t stay in touch - we attended the same university, and I remember passing her as I left a class, a quick “Hey…” and moving on.  I have no idea where she is now, but I wish her all the best, wherever she may be.  Life moves on, and though she was but a glimpse in mine, I appreciate having that time as a memory.

For me, this brings to light the importance of every interaction.  While by no means monumental in my recovery, she was a positive part of it, and its little bits like this might be the nudge that encourages one to ignore the statistics, defy the odds, and just get better.

That’s my memory, but do you have any memories of small interactions that have been a positive nudge in your life?  Please share in the comments.

Wednesday, January 20, 2016

My Job in Recovery

I remember being afraid of failing to get better.  What I think is interesting about the memory is that it wasn’t so much a fear of not getting better but a fear of failing - failing to get better.

From the beginning, my recovery surpassed expectations - my healing and commitment to the process was widely praised.  The pressure to get better was on - I was expected to continue this unusually fast recovery or else I would fail the people around me.  It’s important to note that absolutely nobody intentionally put that pressure on me - I received the perfunctory better health encouragements - that I’d be “better in no time” or “back to my old self”, and I’m sure they were not intended to make anything more stressful, but I felt the stress of expectations.  It was my job - or even my duty - to heal and make these motivational comments reality.


Simultaneously, the mediocrity of the tasks that got praise was frustrating - looking back I recognize that the mental repairs and adaptations my brain was making were remarkable, but at the time if felt like mocking praise.  I remember questioning, “Is this all I can do now?  This is what’s getting applause?  I used to do really great things!  Now I’m reduced to…eating with a spoon on my own…working through elementary math calculations…putting one foot in front of the other.  Why are my ‘great achievements’ so damnably trite.”  Reflecting on this attitude from the present time, I feel those thoughts were somewhat pretentious - many survivors have difficulty with such tasks, yet I was able to do all these relatively quickly.  That is amazing, and I know that now.  Fortune or the Fates or Love (see a previous entry) or what have you allowed me to move ahead in my recovery, yet still I cursed the praise while urning for more.  This is a part of recovery that many survivors may not experience, or maybe people do feel the same thing or some variation of this.  Please share below (comments).

What ever the case, I pushed my body - insisted that I would not accept what I was “supposed to do” as an applaudable accomplishment. I had a job - to recover - and damnit, I was going to do it, whatever that meant.  Do I think it was good to have this attitude?  I really don’t know.  It might have convinced my mind and body to heal, but I know it brought out a lot of self-anger.  A truth of me is that I’m never fully happy where I am - always want more of myself and more recognition.  That truth was present as I recovered, and it may have pushed me to do more than I was expected to do.  Again, please share your thoughts on this.


The other side of this situation is that I’ve often heard that happiness if found by being at peace with where you are.  Being at peace with who you are.  Happiness is striving to achieve what is possible, but finding contentment wherever that takes you.  My discontent brought a lot of pain to myself and those around me.  It was only because I am fortunate to be surrounded by such love that most of these relationships have remained.


Were my self-expectations good for my recovery or bad for my social interactions?  Were they both?  How?  I would appreciate your thoughts on the topic - share some of your own stories about your own self-expectations.

What I Know of the Accident

In this blog, my primary topics are recovery, storytelling, and my experience with TBI.  However, when I perform “Who Am I, Again?”, I’m often asked, "What actually happened in the accident?"  My initial reaction response is that this isn’t important - while every case of TBI is different and caused for different reasons, many of the recovery experiences are the same, and its the recovery, not the accident, that this project is focused on.  Also, I don’t remember - I was in a coma.

But I also recognize why people are curious - you want to know where a journey starts from, and so, with that in mind, this is the story of what happened as its been related to me:

It was November 4th, 1999 - I was a 17 year old high school senior and basking in all the arrogance that entails.  In the evening, I had gotten into a spat with my mother over - I’m not sure about what, but it probably had to do with some work I didn’t want to do.  My sister, however, was attending a class wide sleepover party at her middle school - a small Quaker school that was about a 20 minute drive outside of town.  I wanted out of the house and away from my parents so I argued that I should take her to the school, and was allowed to be the chauffeur.


As a new driver, anytime I got behind the wheel I was excited.  On the way to the school, we took some back country roads through the hills of Pennsylvania - much more exciting than the regular state highway.  Knowing my temperament, then and today, I was probably driving just a little above the speed limit - not to save time but to show my mastery of the roads - yet we made it to the school without a problem.


At the school, I do remember seeing my former French teacher - the teacher chaperoning the event - and I remember feeling good and very adult.  No longer was I one of the kids in her class but now I was the adult driving one of her students.  It was exciting to be achieving this new independence.  We spoke about my university plans, her life in college, how I was already feeling checked out of school (senior-i-tis), and I remember watching her waving goodbye as I pulled out onto the country road in my parent’s maroon red 1986 Volvo sedan, honking my own farewell.


I mention that scene in my performance piece, and that truly is my last memory.  What happened is that on the drive back, on the same country, hilly roads, I passed a car going the opposite direction.  He has said it didn’t seem like I was going fast, but I expect I was pushing the speed limit just a little.  Immediately after he passed, I lost control of my vehicle and crashed into a telephone pole.  No-one knows why I actually lost control, but as time has passed several possibilities as to what happened have been proposed - it may have been a deer jumping into the road that caused me to swerve, I may have been adjusting the stereo and lost track of the road for a second, or any one of a thousand other possibilities.  The story I tell myself, though I have no proof of this, is that I was a little too far on the right side of the road - hugging the right curb - and going a little too fast.  When the man passed me, being a new driver I pulled just a little more to the right, my wheel slipped off the side of the road, I lost control and careened into the telephone pole.  Whatever the reason, the man who had just passed saw my accident in his rearview mirror and, because this was before cell phones were in their current prominence, he found a nearby farmhouse with the lights on where he called 911 emergency services.

That evening had been a quiet evening in terms of emergencies, and the nearby rescue team was able to immediately dispatch a Life-Flight helicopter to my location.  Interestingly, our family auto mechanic and friend was volunteering on the emergency squad that night, so he recognized the car and immediately knew who was inside.  This rescue team extracted me from the vehicle and flew me to Geisinger Hospital Emergency room where my journey through recovery began.

As I think about this story, I am constantly amazed at the events that all happened in just the right manner so that I could have the best possible chances for recovery.  I’ve been told that I must have been really lucky that night, but then I remind whoever tells me this that I was in an accident that put me into a coma, give an laugh, and we move on.  Whatever the truth is, that’s the best I know of how my accident occurred, but like I’ve said, this is only the beginning of a story, and the rest is a lot more interesting.

Tuesday, January 19, 2016

Artcile Review: "The Healing Power of Storytelling"

Another article review, this one “The Healing Power of Storytelling” by Richard C. Senelick, M.D. written for Huffington Post.

In this article, Dr. Senelick advocates doctors using storytelling as a way to give advice and as an important part of understanding the patient’s condition.  In his words, “Storytelling is a two-way street. Illnesses unfold as stories, and physicians need to learn how to listen to those stories. The same is true of giving advice, for if good advice is given in the wrong way (a listing of individual facts), the patient will not follow it.”  To illustrate the importance of listening to patients, Dr. Senelick cites his time with an elderly Scandinavian ship captain, or an immigrant woman struggling in her new land, and how hearing these stories - and the stories of other patients - teaches him while allowing him to know the full context of a patients condition.  He then compares this to the experience of taking his 95 year old mother to the doctor, and emotionlessly answering the required questions dictated by the appointed medical assistant.  As he explains his criticism, “We might as well have been answering a robot, for when he was done, he knew no more about my mother than when we first sat down.”  After recognizing the interpersonal benefit of stories being shared by patients, Senelick continues by citing specific ways and examples of how and why storytelling is an effective tool when doctors are providing information, primarily focusing on how a person is more likely to remember and apply a story as opposed to a listing of fact or processes.

Put simply, I love this article and it supports much of what I am coming to understand about storytelling as a medical tool.  I particularly appreciate how Dr. Senelick acknowledges that a doctor must both listen to and share stories to make using storytelling as a tool fully effective.  The previous article I reviewed (“The Healing Power of Story”) discussed using literature studies to practice listening to a patient, but this article emphasizes focusing on the patient’s story - studies of metaphor aren’t needed when discussing what actually happened to a person.  Dr. Suzanne Koven (from the previous article) suggested that using literary examples makes it easier to discuss difficult topics with patients - that may be true, but I believe that if one is able to move beyond discomfort and listen to what’s actually happening without judgement, it provides an clearer picture of what’s occurring.  Granted, some people may be hesitant to share personal information, and literary examples may help to provide comfort by making the reality of what’s happening more abstract, but in my experience, more often than not, people love to share stories if a listener shows genuine interest in what is being shared.  From the tone of his article, it seems that Dr. Senelick is pushing for the doctors not to listen to patients because “they are required to” or “it’s part of the procedure”, but because there is a genuine interest in gathering more information.  To make this interest genuine and not merely “put on” is, perhaps, the trickiest part, but I suggest that once a doctor is willing to truly listen, he or she will quickly see improvements in both his or her professional and personal life thus continuing this practice for reasons of enjoyment and self-improvement.  This provides a departure from the methodic, banal procedures that might plague routine visits.  Again, Senelick, “As we careen into the digital age…Storytelling, in its various forms, may be one way to connect more meaningfully with our patients, to both help us get to know them individually and help them understand their physical condition.”

Despite the praise I am heaping upon this article, there are questions that remain.  First, Does a busy doctor have time to create a personal connection with every patient who comes through the office door?  When Senelick describes hearing the stories of his sea captain patient, he says, in his words, “I always asked my office to block out twice the usual amount of time so I could get a double dose of his spellbinding stories.”  This is wonderful if time allows, but as I understand it, many doctors are already overworked and taxed for time.  Scheduling extra time to spend with someone because they are a natural storyteller is a privilege that many practitioners may not have.  How does one deal with the limits of an 8 hour, or even 12 hour shift?


There is also the question of personal investment in a patient - by creating the personal relationship that naturally develops by sharing stories, could a doctor risk providing less sound medical advice because of personal feelings toward a patient?  While I, admittedly, have never worked or received training as a medical practitioner, as I understand things, a doctor is expected to keep emotions out of the medical equation - would personal story sharing create emotions that could potentially cloud professional judgement?

I do not raise these questions as a nonbeliever in Dr. Senelick’s article, but as a critical reader.  While my gut agrees whole heartedly with the ideas expressed in the article, I promised myself and readers of this blog that I would carefully examine everything read and posted - my goal is to find a truth about any benefits and share information, not to adhere to a dogmatic belief in the miracles of storytelling.


That said, my favorite part of Senelick’s article is when he backs up his claims and observances with facts.  In 2011, the “Annals of Internal Medicine” published a study that looked at whether storytelling could improve the blood pressure of people with hypertension.  In this study, two groups of African-Americans with high blood pressure were observed, one group heard stories from peers about how to deal with high blood pressure while the other group received different materials, and the results are what would be expected from reading his article.  In Senelick’s words, “The group that watched stories related by peers who shared their problem were more successful in lowering their blood pressure than the other half. A story told by a friend or peer is most effective in creating a lasting memory.”  While this is only one example, and can in no way provide proof of the power of storytelling, it is some does provide information that gives even more weight to the argument.


Those are my thoughts, but what do you think?  Can anyone provide more examples of studies concerning the benefits or lack there of when using storytelling?  Does anyone have any stories they would like to share?

Article: Richard C. Senelick, M.D. “The Healing Power of Storytelling.” Published April 9th, 2012 in Huffington Post.  Accessed January 17th, 2016. http://www.huffingtonpost.com/richard-c-senelick-md/patient-care_b_1410115.html

Monday, January 18, 2016

Always there...

I remember my mother sitting in my hospital room at Magee Rehabilitation, in her chair that was on the left side of the bed.  She was always there - simply sitting and waiting.  Encouraging me, listening to me, checking in on me.

She had taken time off work to be with me and moved herself to Philadelphia, staying with friends and at shelters so she could spend almost every day at the hospital.  She was a constant comfort and frustration, and this duality created a strange mix of emotions - there were many times I would feel angry or trapped by her insistence of being there for everything, but simultaneously safety with her presence.

I recognize that having the privilege of a mother being constantly there is something most TBI survivors cannot have, and in some ways I don’t know that it was always a good thing - perhaps building up some co-dependency - but I also recognize that my recovery would have been drastically different without her there.  Her insistence of physically showing that her love was always there inspired me to improve, even when that inspiration came from a desire to have more time away from her.

Blessings tend to comes in a mixed-up muddle of ways, and my the dedication of both my parents, but in this case my mother, was certainly a blessing.

About Me - the quick and simple

I’ve been trying to write a little about myself, so people who don’t know me can have a better idea of where I’m coming from in my writings and commentary, but I’m finding that it is a really hard thing to do - write just a short bio - I feel like I’m always leaving too much out.  Below is my bio that leaves out all the interesting details, but I hope it gives an idea of where I come from.

Originally intending to be an actor, I moved away from theater after a car accident that caused Brain Injury in November of1999.  After this incident and as I began university studies at the local Bloomsburg University, I dabbled in a wide variety of social science and artistic fields, finally deciding that I wanted to be a Storyteller after witnessing a performance by Master Storyteller Jay O’Callahan.  The day after this performance, I began to study the art with head librarian and Master (though not as well known) Storyteller Hal Pratt.


While independently studying storytelling, I was also completing my Bachelor of Arts in Philosophy, and upon completion enrolled in the graduate program for Storytelling at East Tennessee State University, where I studied with Dr. Joseph Sobol, as well as other artists and academics.  I completed the graduate program with a thesis presentation titled “Who Am I, Again? a verbal collage of stories about Traumatic Brain Injury”.  Upon graduating, I began working various part time jobs and professionally performing at locations throughout the North-Eastern United States, including several performances of my signature piece about Brain Injury at conferences throughout the country.


After leaving Tennessee and working several years in Pennsylvania as an independent performance artist and an artistic educator with Box of Light Studios, in 2012 I decided to see more of the world by teaching English in Korea.  Currently, I am finishing my time in Korea, living in the small city of Pohang and preparing to begin my final Korean teaching contract.

That’s the quick and easy of where I’m from, but I hope it helps to give an idea of my back ground - if you have any questions, please leave them in the comments below.

Sunday, January 17, 2016

Article Review: "The Healing Power of Story"

I read the article The Healing Power of Story by Elizabeth Cooney and released on the Harvard Medical School Website.

The article briefly lays out the new Writer in Residence program at Division of General Internal Medicine at Massachusetts General Hospital.  For this program, author and HMS assistant professor of Medicine Suzanne Koven guides workshops for physicians that focus on looking at literature, applying the themes to real life situations and discussing the questions that arise from the readings.  As expressed by Koven, “These are difficult questions and I find that people who do this kind of work are very eager to talk about them and feel very grateful to have an opportunity to talk about them.”  By removing oneself from the somewhat invasive nature of the questions, physicians find it easier to discuss personal matters that arise in appointments. 


Approaching and discussing sensitive personal matters through the veil of story makes perfect sense to me, and is much of what this blog is about, but I ask, is using classical literature is necessary to discuss these themes?  Koven states, “The storytelling is really where the medicine is.  There is nothing that I can think of, there is no kind of testing, there is no sort of physiology or pharmacology that is more essential to clinical skill than the ability to elicit, interpret and communicate someone else’s story.”  From here, however, the workshops focus on  the interpretation of literary masterpieces.  Why can we not focus on the stories told by patients - when a doctor asks “What’s wrong?” should a patient be expected to relate their physical experience using metaphors?

That’s not to say that I think this is a bad idea - literature moves us and helps to explain experiences that are foreign.  More often than not, a patient’s explanation of “Where does it hurt?” will not be as comprehensive as one crafted by George Orwell (one of the authors studied in this workshop), and I believe this is an amazing first step in opening doctors to listening more carefully.  As put by Koven, “…The professional has to write notes in cold, clinical terms. And they can’t discuss what happens freely, out of respect for privacy. Their training teaches them to bottle up these thoughts and emotions.”  Literary studies clearly show a step in improving and increasing the comfort and productivity in patient/physician relationships.

Despite the grand intentions of this program, I feel the program does place a burden on the patient - being inspired and able to tell a story upon entry.  Similar to how doctors have been trained to bottle thoughts and emotions while diagnosing a patient or providing general care, patients often don’t want to open up to the doctor any more than necessary - say what’s wrong, turn your head and cough, and get out of there.  I would hope that, simultaneous with learning to interpret literature, doctors are taught how to elicit stories from patients.  Although these new stories likely won’t be peppered with the same colorful or enrapturing language, by better hearing and interpreting personal stories I think doctors would find ways to better care for the individuals.

Furthermore, the article states that this opening of conversation will improve care by practitioners, but it doesn’t clearly explain how this will occur.  There will be more communication in the process, but I was left wanting a more scientific explanation of how this will improve care.  Why wouldn’t a unbiased, unelaborated look at symptoms and situation provide a clearer diagnosis of a patient’s condition and provide a clear best path for recovery?  I don’t think this would provide a better diagnosis, but this article didn’t provide evidence or reasoning to back that up.

This program sounds like a grand idea, and a great start, but it seems to keep the focus on the doctors’ process instead of the patients’ care.  My gut suggests that this interpretation of literature could have more effect if it were coupled with workshops on helping patients tell a story, but I similarly don’t have data to support that.  I want this data - if anyone reading can provide any sources with such information, please post .  I also would also love to hear your thoughts on my critique, so please post comments.

Article: Elizabeth Cooney. “The Healing Power of Story.” Published May 15, 2015. Accessed January 17, 2016. http://hms.harvard.edu/news/healing-power-story.

Saturday, January 16, 2016

God?

Did God save my life?

This begs the question, “What is God?”

I don’t believe in a blessing by a deity that brought me back from the dead.  I don’t believe in any “plan” that decided the events that happened to me or a “mission” that I’ve been called on to complete because of the miracle that touched me.  I certainly don’t believe in any bearded guy sitting in the sky or any amorphous consciousness that in anyway affected the events surrounding my accident.

Nor do I believe I was merely lucky.


What I do believe in is community and love - that’s Love.  I have been lucky in the circumstances of my life to have been raised in and to have access to such a community spirit.  At every moment of my recovery, my family and I were enshrouded by the infinite wrappings of Love - this came from the outpouring of well wishes and prayers by the community, the incredible talent and attention by the medical staff that cared for me, the consistent and pragmatic offers of help from any person who had anything to give, and all the people in uncountable situations holding out a hand to help do what had to be done.

i call this the Divine - the Love that exists in all communities coming to the surface and then being accepted by those who need it.

This is my personal philosophy, and if you don’t want it, I have no desire to push it on you.  Every person needs to come to one’s own spiritual beliefs and, if these beliefs are held in a fashion that is tolerant of other people, I hold that there is no “right” or “wrong” way to have one’s faith.  But if this helps you find support in anyway, please know that I do believe this with all my being, and I hope it helps you. 

I was born hearing the idea that “God is love”, and while that’s beautiful in many ways, I prefer the inverse: Love is god.

If you are a survivor or was with someone through their healing, I would love to hear if and how you found any spiritual comfort.  Perhaps your story will help another.

Thursday, January 14, 2016

Why Storytelling is Important in Healing - Initial thoughts:

As humans, the ability we have that makes us different from every other animal species is storytelling.  It is a necessary part of our existence as societal creatures and we use some form of storytelling in nearly every communication we make.

We need to tell stories.  Because of limitations to our senses, an experience can never be fully expressed, and thus we do the best we can to share it with stories.  This is also how we create bonds with other people - by having stories that we share.  Yet storytelling, especially oral storytelling, is no longer deemed as important or necessary, and this is changing the fabric of how we function in society.

As one on one, or even performer/audience storytelling is getting nudged to the corners of culture - replaced by charts, emoticons, and other technological adaptations - many feel less comfortable sharing an experience.  This unwillingness to share and limited locations to listen to others can create a sense of isolation - “No-one knows what I’m going through”, “My experience is different”.  Returning to the topic of recovery from TBI, or any injury, my sense is that this isolation from lack of storytelling can cause a healing person to give up - not consciously, but with the bombardment of medical charts and predictions a recovering survivor doesn’t feel compelled to ignore the statistics and heal.

I also believe that every healing journey has successes and failures, many of which are never chronicled in medical literature - perhaps the fear of getting into a car again after an accident, or the thrill of actually chewing and swallowing food after a mouth has been wired shut.  By sharing these experiences through storytelling, a recovering person can better anticipate some future stages in the journey.

This is not intended as a criticism of technological advances or the modern medicine process.  I love technology.  Were it not for the medical technologies that were employed in my process, I would not be here - what happened to me would have been unfixable even 30 years earlier.  Furthermore, I am sharing this entirely with modern technology - the internet - because allows communication that was absurd science fiction less than 50 years ago.  My stance is that we need to continue to improve lives with technology, but in this kaleidoscope of bling bling excitement, we should be careful not to forget the elements that define us as human - simple, beautiful ancient methods of communication that may be less dynamic, but are sill powerfully potent in how they can change our mind and even our bodies well-being.

As an inspirational speaker and performance artist, I have had the privilege of sharing the story of “Who Am I, Again?” with audiences throughout America, and what I find most exciting and inspiring about the consistent response is how audiences feel compelled to share their own stories.  Sharing a difficult story helps to remove the stress that story has burdened us with and sharing an inspirational story will bring joy to everyone involved - the listeners will feel inspired and remember their own success stories and the teller will feel a new validation for his or her experience.

This is the stance I hold as I begin this project.  To date my experiences have supported this belief, but I feel a need for more proof to support this, so I will do what has been suggested by a multitude of teachers in my life - if I want to know more about something, do some research.  And that’s one of my missions in this blog - to research the subject of storytelling in medicine.  My initial Googles have turned up a variety of recent articles and books that reference this in some manner, and my goal is to start sifting through the information while keeping an open and critical mind.  I will seek to understand any science that is behind the process, as well as seek to understand my personal reasons of why I feel so deeply about the power of storytelling.  I’ll be sharing this information and commenting on it throughout these writings.

This is where I start, but what are your thoughts on storytelling as medicine?

A Good Memory from Magee Rehabilitation

Morgan decided that he was by brother from another mother - This was joyfully proclaimed every time that he saw me and I gladly accepted this kinship.

A black man who spoke and moved with the air of a street smart Philadelphia native, Morgan quickly made every entrance and exit when on duty, but when he was there, he made sure any room he visited was filled with smiles.  It was his genuine care that I most remember.  This seemed more than a job, for he was  eager to share his infectious good energy while making his rounds.

If I was feeling angry at one of my therapy sessions, he would kneel beside my wheelchair - like the coach in an inspirational sports movie he was getting on my level, listening to the situation, then saying just a few words that let me know ‘This too will pass.”  What was most important was that he listened.  He didn’t need to, it wasn’t part of his job - his job was to make sure I was given my medication and stayed safe - being kind was expected, but Morgan stepped beyond that by sharing himself as a friend.

It was this sort of care that kept me going at my rehabilitation hospital - made me want to continue my recovery.  I didn’t just want to live, but to Enjoy.  This pushed my body to go beyond just what it was “supposed to do” - not just accept the state of things as they are and make the most out of everything.


As I write this, I recognize how important this was for my recovery.  Gaining hope and laughter from interactions with other people made me excited to continue.  Morgan, and those like him, let me know that I wasn’t living because I was supposed to, but because I would get back to life and to get the party started!

An "I am..." statement...

In my performance piece about brain injury, I begin with the question “Who am I, again?”, alluding to the difficulty and confusion with self-identity that often occurs after the dramatic physical and psychological changes that happen as a result of the condition.  While composing and arranging the piece, I saw was focused on the question in TBI, but having worked with the piece over the past decade the universal relevance of this question has become more apparent.  By exploring this question, I have seen how the sudden rearranging of one’s life can happen for many reasons - medical reasons such as cancer, loss of a limb, AIDS, or difficult events such as the sudden loss of a child, divorce, being fired from what was though would be a life time position at a company.  The question of “Who am I now, after this change?” is a question almost everyone must face at some time in his or her life.

That thought occurred to me this morning as I was teaching an English as a second language class (that’s my current job) this morning.  For intermediate to advanced students, I have an exercise I like to do called Back Pocket Biographies.  Explained quickly, this exercise begins with the student forming an “I am…” statement, and then telling a short story involving 3 or 4 events (and sentences) that tell how they got to that statement.

For example, what I often share in class with this exercise goes something like:

“My name is Lethan and I am an American storyteller living and teaching English in Korea, but how did a storyteller become an English teacher?  Well, it began when I finished my graduate degree work in storytelling, and quickly discovered that it’s hard to make a living as a storyteller.  My lack of stable employment and life situations after graduate school soon had me returning to my hometown where I reconnected with my Philosophy professor from undergraduate school, and she told me about how her son, my former classmate, had just returned from a year teaching in Korea.  This sounded interesting, so I followed up on some information she gave me and about 18 months later, I found myself aboard a plane headed to Incheon Airport in Seoul, getting ready to experience life in Korea.”

This is merely my example, a simple story where everything relates to the initial “I am…” statement.  From that point in the lecture, I explain that if that first statement changes, the rest of the story also changes - one can define his or herself in many ways, and that self-definition changes how a person’s story progresses.


And here is where this exercise relates back to recovery - when asking “Who am I?”, in many ways the answer will dictate what the rest of the story is about.  Saying, “I’m a survivor”, has a very different effect than saying “I’m a screwup who should’ve died.”  The physical situation may be the same, but by insisting that the definition of that situation is different the results will change - a more positive definition denotes a better situation which will lead to better results.

This is not intended as any sort of cure - things are still difficult and there will be pain - but by viewing the hardship in a more positive light, the events become much more interesting.  Some might argue that there is no point - the same shit’s going to happen either way.  That may be true, but  physically, laughter and smiling feels much better than crying and spitting at the world.  I suggest that its a thing to try, and if it helps or lessons the pain even a little, then maybe its worth the work.


All that said, I know it is much easier for someone else to say “Smile” than for someone else to do it.  I was enormously fortunate to have a strong community surrounding me that really pushed me to smile at every opportunity, but the urge to acknowledge that urge that makes you want to give up everything hit me often, and still does.  My statement can easily become “I’m a failure”, “I’m a dumbass that was supposed to be dead”, “I’m worthless”, or any other demeaning label with one difficult incident.  Life never is better when defined like this, and I often find other parts of my life tearing apart much quicker when these statements are in my mind.  It’s important to acknowledge that these emotional extremes often happen quicker after brain injury, and while a person can learn to temper these emotions, there is often a lasting tendency for extremes, but that is not an excuse. 

I begin my story by answering the initial question of “Who am I, again?” with “I am Lethan.”  That is all of me, and no matter what happens, I must take responsibility for any emotional extremes, for I am a survivor of brain injury, thus having more difficulty controlling these extremes than some, but I am also an adult and therefore responsible for my actions, regardless of the cause.

This topic is getting heavier than I expected, but my point is that you define yourself. There’s no right or wrong way to do this, but be aware that the story that accompanies you will arise from that self-definition.  Wallowing in pain and sorrow can be an important part of healing - it seems foolish not to acknowledge that this has inalterably changed your life and the fates seem to have singled you out for some damning sort of devastation.  That is true.  But is that all of you?  Are you a simple puppet pulled about by cursed strings or are you just going through some rough shit?  I don’t mean to over simplify anyone’s hardships, but I want set the extremes so that any point in-between can be picked.

The statement I fall back on is rather neutral, but honest - “I am Lethan.”  And I’ll own every statement that comes with that.


What’s your statement?

Tuesday, January 12, 2016

My Recreational Therapist

One of the purposes of this blog is to share memories I have from my recovery experience, so here's the first of those:

I remember Jeff, my recreational therapist.  Initially, I found his job title slightly absurd - a therapist to teach me how to play? - but as my mind began to come together, I remember feeling close to him.

We were both fans of Phish and the Grateful Dead - he was more of a Grateful Dead fan and me more Phish, but we connected with that.  I don’t remember sharing many stories - he was a far more experienced concert goer that I - but I do remember feeling relieved that he understood where I was coming from.

The first time I walked outside was a huge step for me.  It was with Jeff and his beautiful assistant Gena, in downtown Philadelphia.  The broken, grey concrete sidewalk guiding my first steps away from the hospital.  The smoggy city air felt amazing - this was the first exposure to sunlight in more than a month, and the warm rays touched my skin as a crisp fall breeze bit my cheeks.  I looked to the tops off the buildings - the sky was a perfect baby blue, and the shadows blanketed the sidewalk.  We turned a corner, stepping out of the shadows and sun beat down with a joyous blaze.  I had a to squint and laughed at nothing and everything.

Beginning with slow, heavily monitored steppes, my excitement soon pushed me to walk at a quicker, if slightly choppy, pace.  My feet still dragged and landed with flat steps, but I was stepping without assistance and away from constraints of the hospital.  The urge to run welled inside me - not to run away but run in celebration - but this wouldn’t be helpful to the situation, so I quelled that desire.  Don’t do more than what is allowed, simply take each step as it arrives.  Take your time.

Remembering sensations in my body, a nostalgic smile covered my face and I had to be brought back to the present by Jeff’s hand on my arm - don’t go too fast - wait for the walk sign to cross the street.

And I remember seeing the Franklin Institute - it is only a few blocks away from the hospital, so we would walk there and return - and I remember seeing the lawns, yellowed by the season, and the trees almost barren but with the remaining red and gold leaves clinging to the branches, refusing to be a victim of the wind.  I want to say that I felt a kinship with those leaves, but that’s too metaphorical and I’m sure I didn’t recognize that at the time - but the colors not lit by the sterile hospital lights were amazing.

Who Am I, Again? - a film

A video of the story Who Am I, Again? a verbal collage of stories about TBI is available at:

www.whoamiagain.com

This is what this blog and project is centered around, so please take a view and enjoy.





 This film was a way to start of the project TBI voices (www.tbivoice.com) which was organzied by Attorney Gordon Johnson (www.tbilaw.com) and collects stories of Brain Injury survivors.  All this is an important resource for legal matters involving Brain Injury.

Introduction

Who Am I, Again?

We start it simple -
I am Lethan.

I am also a brain injury survivor with a Master of Arts degree in Storytelling.  Who Am I, Again? is a storytelling piece - what I call a verbal collage - that shares the experience of Brain Injury using the oral tradition.

I’ve worked and lived with this piece for more than a decade, and have had the privilege of sharing this story at events throughout America, but now feel it is time to take a look at this story in a new way. With this in mind, I’ve decided to write a book to accompany the spoken performance.

What will this book be?

I want a book that provides something more - something that doesn’t look to mimic the storytelling, but that will provide something different.  It’s with that goal that I’ve started to create a list of what will be included in the book:

1) An explanation of my process in creating the Who Am I, Again? - one of the great things about creating this story was the process - the serendipity of events as they came together as well as the discovery process in organizing all the stories collected, and I think an explanation of my technique may be useful to other story collectors.

2) The use of storytelling as a healing tool - at times, common sense healing will be forgotten in medical practices, and I feel that using storytelling is an example of that.  What’s exciting is that I am beginning to see more medical literature that recognizes how storytelling is psychologically and physically beneficial.  I want to take some time to review and comment on that literature.

3) How this story has been responded to and affected my experience - I have come to a strong belief in the power of story through my experiences, and I have seen many audiences respond to Who Am I, Again? in some interesting and moving ways.  I feel that sharing these experiences will add to the case for the power of storytelling.

4) A script of Who Am I, Again? - the story provides the starting point for this project, so I feel it is appropriate and some people may appreciate having a copy of the script available.

5) A in-depth look at my personal experience with TBI - Who Am I, Again? is a performance piece that is meant to teach, but also to entertain.  For this reason there is a limited time to present, and because of this, there are many experiences that are not discussed - some that I have never related.  It is my goal to share a less refined story and once again be in touch with the raw emotions of the experience.

Now, please note, this is just a starting point.  The final book might include more topics, or some might be cut - this project is still brand new, so I really don’t know, but that’s where you come in…

So what’s the blog about?


As I settled into this writing process, it occurred to me that one of the things I love most about storytelling is the interactive creation of the story, and in some way I want to have that with this Blog .  While I can’t get the immediate reaction feedback that’s part of storytelling, I can get your comments on my thoughts as they grow and your responses to pieces I write.  And that’s what this blog is for - I want to know what you think about this project.  What do you think should be included in this book?  Am I minimizing any set of experiences that I’m not aware of?  Does the style of writing keep your attention?


So please, join with me in this process - share what you like or don’t like about the project, share your stories, share some time and just read along.  I’m excited to begin this, and am thrilled that you’re joining me for a bit.  Let’s see what happens next…