Trapped

Trapped

    Last night gave me a chance to watch a few TED talks and to reflect on the shell we call our body.  As with the molting crab, this "shell" can and does protect us, but at times can become a trap forcing us to find a way out or to give in and accept that we are indeed stuck.  This sometimes can be physical, as in a deformity or a paralysis, or even a loss of a sense such as sight or hearing.  But more often than not, the cage closes when something happens to our minds...this can be memory loss or bipolar disease, autism or Parkinson's, a tumor or an infection.

    This was the case in the first of the talks I watched the other night.  Martin Pistorius contacted a brain infection at the age of 12, and soon his physical functioning became something that even doctors gave up on, telling his parents to "take me home and try to keep me comfortable until I died."  But inside he was alive, just unable to let anyone know.  In his "talk," he describes this trapped feeling: I don't know if it's truly possible to express in words what it's like not to be able to communicate.  Your personality appears to vanish into a heavy fog and all of your emotions and desires are constricted, stifled and muted within you.  For me, the worst was the feeling of utter powerlessness.  I simply existed.  It's a very dark place to find yourself because in a sense, you have vanished.  Other people controlled every aspect of my life.  They decided what I ate and when.  Whether I was laid on my side or strapped into my wheelchair...With no way to communicate, I became the perfect victim: a defenseless object, seemingly devoid of feelings that people used to play out their darkest desires.  For more than 10 years, people who were charged with my care abused me physically, verbally and sexually.  Despite what they thought, I did feel.  The first time it happened, I was shocked and filled with disbelief.  How could they do this to me?  I was confused.  What had I done to deserve this?  Part of me wanted to cry and another part wanted to fight.  Hurt, sadness and anger flooded through me.  I felt worthless.  There was no one to comfort me.  But neither of my parents knew this was happening.  I lived in terror, knowing it would happen again and again.  I just never knew when.  All I knew was that I would never be the same.  I remember once listening to Whitney Houston singing, "No matter what they take from me, they can't take away my dignity."  And I thought to myself, "You want to bet?"

    Being trapped inside takes many forms, including aphasia, a condition that arises usually after a massive stroke, one form having the person thinking that they're talking fluently but the words emerge nonsensically (as in thinking you're saying "I want coffee" but the words that come out are, "It's raining outside.") while another form reverses the affliction, the person outside telling you one thing and you hearing a completely nonsensical phrase.  But in Martin Pistorius' case, he simply couldn't speak or write or otherwise convey his thoughts and feelings.  My existence was tortured by monotony, a reality that was often too much to bear...I taught myself to tell the time by noticing where the shadows were...My mind became a tool that I could use to either close down to retreat from my reality or enlarge into a gigantic space that I could fill with fantasies.  After years, it took an aromatherapist to recognize his life and awareness inside, encouraging the parents to have him tested properly and perhaps explore some new equipment (such as eye reading technology which now allows him to type and communicate). .But as I began to communicate more, I realized that it was in fact only just the beginning of creating a new voice for myself...I discovered that true communication is about more than merely physically conveying a message.  It is about getting the message heard and respected...

    The inability to convey your thoughts and communicate is one aspect of being trapped in our bodies (one excellent view of this is the true story of Jean-Dominique Bauby who suffered a massive stroke and locked-in syndrome but went on to write the book The Diving Bell and the Butterfly -- he could only blink his left eye for yes or no to a letter on a board).  But the case of Alix Generous was different, for she was "normal" in all movements and appearances, but not socially.  She had autistic spectrum disorder.  In her talk, Alix tells of her struggle: I am a very visual thinker.  I think in pictures, not words.  To me, words are more like instincts and language...There are many people like me; Nikola Tesla, for example, who could visualize, design, test, and troubleshoot everything -- all of his inventions -- in his mind, accurately...I have Asperger's, a high-functioning form of autism that impairs the basic social skills one is expected to display.   It's made life difficult in many ways, and growing up, I struggled to fit in socially.  My friends would tell jokes, but I didn't understand them... One of the things with Asperger's is that oftentimes, these people have a very complex inner life, and I know for myself, I have a very colorful personality, rich ideas, and just a lot going on in my mind.  But there's a gap between where that stands, and how I communicate it with the rest of the world.  And this can make basic communication a challenge.

    Another talk I watched dealt with talking to survivors of suicide, a talk presented by JD Schramm: Research shows that 19 out of 20 people who attempt suicide will fail.  But the people who fail are 37 times more likely to succeed the second time.  This truly is an at-risk population with very few resources to support them.  And what happens when people try to assemble themselves back into life, because of our taboos around suicide, we're not sure what to say, and so quite often we say nothing.  In her new book Never Broken, the singer Jewel wrote: What is in this book took me forty years to learn.  My hope is that anyone in need who reads this might be helped by witnessing what I have gone through...if they (the lessons she learned) can help you to get where you are going in less time and with less pain than it took me, then this book will have been worth writing.  One of her "lessons" learned?...You can't outrun your pain.  Your are strong enough to face whatever is in front of you.  Medicating your pain will only bring more pain.  The only genuine shortcut life offers is facing your feelings.  They won't kill you.  Feelings are your soul's way of communicating.  Pain is trying to teach you something, and if you don't listen now, it will speak louder and louder until it is heard.

     The late Sherwin Nuland, respected surgeon and author, had many talks on TED; but perhaps one of his most interesting ones was that of the power of ordinary people.  He talks of how the Indo-European root of the word "hope" is a version of "curve," a change of direction.  And the root of "patient" is the same root of the word "compassion."  In all of the above cases, ordinary people both patient and caregiver overcame tremendous obstacles, broke free of their body cages and moved forward.  Martin Pistorius adds: True communication increases understanding and creates a more caring and compassionate world.  Once, I was perceived to be an inanimate object, a mindless phantom of a boy in a wheelchair.  Today, I am so much more.  A husband, a son, a friend, a brother, a business owner, a first-class honors graduate, a keen amateur photographer.  It is my ability to communicate that has given me all this.  And Alix Generous?  So in terms of having Asperger's, it can be viewed as a disadvantage, and sometimes it is a real pain in the butt, but it's also the opposite.  It's a gift, and it allows me to think innovatively.  At 19, I won a research competition for my research on coral reefs, and I ended up speaking at the UN Convention of Biological Diversity, presenting this research...And at 22, I'm getting ready to graduate college, and I am a co-founder of a biotech company called AutismSees.

   Sherwin Nuland summed it up nicely: So, the lesson is very clear.  The lesson is that our patient -- the world, and the disadvantaged of the world -- that patient deserves our compassion.  But beyond our compassion, and far greater than compassion, is our moral imagination and our identification with each individual who lives in that world, not to think of them as a huge forest, but as individual trees.  So, here we are.  We are, should be, morally committed to being the healer of the world.  And we have had examples over and over and over again -- you've just heard one in the last 15 minutes -- of people who have not only had that commitment, but had the charisma, the brilliance -- and I think in this room it's easy to use the word brilliant, my God -- the brilliance to succeed at least at the beginning of their quest, and who no doubt will continue to succeed, as long as more and more of us enlist ourselves in their cause.  

    While this post has been a bit longer than usual, my hope is that the words echoed that of Dr. Nuland, that you've recognized people who have not only had that commitment, but had the charisma, the brilliance...and indeed, that more of us enlist ourselves in their cause.  The ability to communicate is essential, as is the ability to accept and understand what is trying to be communicated.  And it is indeed difficult, as anyone who is a caretaker can tell you.  But sometimes, it is the ordinary person who listens, perhaps in a different way, and understands, someone who hasn't quite yet given up, someone who helps to free that person struggling to break out of his or her shell, someone who perhaps just happens to bring meaning to the word, serendipity..  The exciting part is, that person who stops to listen, who takes a different course, who follows the curving path to hope...that person just might be you.