The Brain is Awesome

 "But it must be said from the outset that a disease is never a mere loss or excess - that there is always a reaction, on the part of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity, however strange the means may be: and to study or influence these means, no less than the primary insult to the nervous system, is an essential part of our role as physicians.  This was powerfully stated by Ivy McKenzie:

For what is it that constitutes a 'disease entity' or a 'new disease'?  The physician is concerned not, like the naturalist, with a wide range of different organisms theoretically adapted in an average way to an average environment, but with a single organism, the human subject, striving to preserve its identity in adverse circumstances."

- Oliver Sachs, The Man Who Mistook His Wife for a Hat

A couple weeks ago I went to a small workshop entitled, "Mapping the Brain" led by a F.H. Willard, a professor of Anatomy at the College of Osteopathic Medicine at the University of New England.  In four hours he summarized basic brain organization and chemical processes, skimming the surface of how the brain functions and facilitates our movements and interactions: our lives.

This relates well with my internship where I facilitate a few support groups and have one-on-ones with adults who have a traumatic brain injury, twice a week at The Krempels Center - an extremely organized and sophisticated program.  There are a variety of groups with titles such as: Just Move It, Creative Expressions, Brain Power, Transitions, Life Skills, Aphasia Support, What's Cooking?, and Easy Reader, which all center around speech, occupational, and emotional therapy for people looking to find community with those who have found themselves on the journey of "Life After Brain Injury" as Krempel's slogan identifies.

The stories of the members can be both sad and scary.  My brother doesn't let me tell them, and says, "Sarah, I have enough mental problems of my own!"  Some are the kind of stories that you can't think about too much because they could happen to anyone, such as car accidents or strokes.  Some involve alcohol, either having crashed or been hit due to someone being under the influence.  Some were in the driver's seat, others weren't.  One woman, not under the influence, was flung from her car when she crashed at 65 mph, causing her to be in a coma for six months and waking up nonverbal, unable to walk and seeing quadruple.  Doctors gave her one negative prognosis after another, yet here she is today walking and talking.

One of the members wrote a memoir, which I read in one sitting as it was so compelling.  He had been an alcoholic throughout his teen years and into college, but as he was a middle class, smart, white kid - he was just seen as the life of the party.  He was funny enough to keep drinking and act destructively without anyone to seriously advise him to stop.  Even after his brother fell from a three story apartment and injured his spine, during a party in Cancun, causing him to forever be in a wheelchair, it still didn't stop him from continued binge drinking.  A year after his brother's accident, he crashed his own car and woke up with brain damage and his left side inhibited, and finding it difficult to walk.  After different kinds speech and occupational of therapy, he now appears to be a normal guy, his brain injury barely noticeable except for the side effect of his limp.  He's a great guy to talk to, despite his struggle to overcome obstacles that were not present before his accident.

Today is Homecoming on campus.  Girls were jumping down from their bunk beds at 6 am above my room, as if it was Christmas morning.  They excitedly rummaged through the kitchen for appropriate food for their day of drinking, ate breakfast, screamed for excitement, and sped out the door in droves to begin tailgating before the game.  Funny enough, they're actually on probation at the moment - I'm not sure of the particulars, and not sure what it prohibits them from, but I believe it interferes with some of their habits outside the house.  Although I always keep wine and beer in my room, the obsession with binge drinking and the way that life on campus, or at least down Frat row over here, seems to revolve around it, is often alarming and seems like a waste.  Now, I can't help but mention from time to time, as I did last night, "I work with people with brain injuries, some which are alcohol-related...  Be smart out there!"  Likewise, on the ropes course, when I put helmets on the kids, I can't help but tell them, "It's important to protect your brain!"  It's the brain bucket, as some kids say.  When they're running around during tag games, I remind them that most accidents happen during tag and to make sure that they... protect their brain!  Protect your awesome functioning brain.

The brain is a crazy place.  It is so fragile, but so accommodating.  It facilitates changes and is what we make it.  As infants, are brains have so little of the white matter that represent the network of axon fibers stretching out and making connections throughout.  The brain grows up and out: the amygdala and brain stem, at the bottom, are the oldest and most instinctual parts and are very similar to that of fish and reptiles.  As we develop, white matter stretches into our frontal lobe as we learn language and how to be social, including how to act appropriately in the culture we're in. Kids start learning how to regulate their impulses and when we're really old, those connections may begin to fade, causing us to forget how to regulate ourselves.  The bladder isn't only mechanical but also socially regulated; our brain tells us where it is and isn't okay to release it.  But if that connection hasn't formed, or is worn away, we may be a little confused.  I informed my mom that our 14 year old cat may be having the same problem, seeming to have forgotten that she's supposed to use the kitty litter.

One of the members was coming out of her five minute seizure, where her brain seems to need to rest for a few minutes as she slips away behind her eyes, saying through tears, "I don't want to be like this anymore.  I try so hard.  I tell my brain to stop and it won't listen."  Her brain injury was caused by falling on concrete three times, having slipped on a puddle in a changing room at a resort.  When your brain hits the ground like that, it swells like a bruise, and it swells more if it is hit again.  This is why concussions are important to take care of immediately - if the person were to hit their head again, right after the first one, more damage could be accrued.

But what is so refreshing about being a part of these support groups, is feeling the level of empathy and compassion that each member has for each other.  Everyone is looking for ways to accommodate for each other and for ways to understand them and themselves.  Life slows down in this community and people take note of others, they seem to find everyone interesting and enjoyable; they are curious and humble, values that are often given less priority in a largely competitive and confident society.

Yesterday, I laughed the most during the Aphasia support group, where we had a bunch of Scrabble letters scattered all over the table.  We challenged them to make the longest word possible.  Since Aphasia affects the language centers of your brain, it's helpful to play a variety of word game that ask members to recall words and organize them, or spell words.  These games are fun for us, too.  One of the older members, who wears suspenders with a few buttons declaring his right wing anti-government beliefs - recently telling me about the conspiracy of the Federal Reserve - said, "anti-disestablishment".  Turns out this is actually one of the longest words in English, and also took up the entire table.  It was awesome.

We are our brains and we're doing the best we can with what we have.  As is said in the above quote, the brain is trying to preserve it's identity despite adverse circumstances.  Those who struggle less, shouldn't take that for granted and those who struggle more shouldn't be given sympathy, but be given respect for the amount that they are continually dealing with and overcoming on a daily basis.  They're lives are making them stronger people and everyone should be curious to learn from that.  Take care of your brain!  It's an awesome structure and is looking for ways to grow.

Black and White

"I am losing precious days.  I am degenerating into a machine for making money.  I am learning nothing in this trivial world of men.  I must break away and get out into the mountains to learn the news."  John Muir

I drew a picture of autumn in my Human Behavior class, just like I used to do back when I was in undergrad: make paint drawings on my computer.  Only this time, I also talk in class and contribute, because I actually have thoughts to share and questions to ask.  My professor was talking about race and explaining the process of children coming to an understanding of it, but she spoke like an outsider, as if she was raceless rather than white.  My class has zero diversity, in terms of color: we are all white.  But why didn't the conversation open up to what that means to people?  Did you always know you were white?  I didn't really even know why race was even an issue until I was older.  I had grown up in such a homogenous community, I didn't even really understand why prejudice existed.  People were people.  Isn't this why Stuff White People Like was developed?  Because some white people think they have no culture?  Then I go on that site and every new thing he adds, I think, "I love that!".

I used to think, when I was little, that if people would just stop referring to each other in terms of color, all those issues would go away!  What was wrong with people?!  And why were there two political parties?  Wasn't there just one correct answer to every problem?  Shouldn't these people be finding that answer?  Why would you support the wrong answer?

I also thought that the world had actually existed in black and white at one time, from watching black and white movies.  I remember staring out the window at all the grass and trees, asking my mom, "So when was color invented?".  I also thought God wrote the Bible and dropped it down from the sky and that the rest of the world lived in chains because my teachers kept telling me to be thankful for the freedom that I had.  I pictured everyone else in the world living in black and white still, in prison, and starving.  And I also thought I was a pretty smart kid.

I'm glad I don't think those things anymore, but the learning never stops.  One of the most frustrating things, in my social work classes, is to hear classmates ask questions such as, "Why is immigration so hard?  I mean, my grandparents came over here and worked."  There is just so much I want to respond to that I have to focus on containing myself and remember that we are not on the same page.... maybe even not in the same book.  I will limit myself to one reasonable comment given without an inkle of outrage... hopefully.

But am I learning nothing in this trivial world of men?  Sometimes, I do want to flee to the mountains and get away from having to converse with those whose ideas don't expand my mind in ways I'd like.  But there is always something to learn, even if it's how to hold my tongue and refrain from exploding over the myriad of challenges faced by all kinds of immigrants and how.....

I will finish my drawing of the woods.

Mass*&%$

I was all set to renew my license when I got a notice in the mail telling me I had not paid my car excise tax.  Initially annoyed, I opted to call and destroy it as soon as possible.  The inane notice had no cost on it which proved unhelpful in preparing me for the prospect of a gigantic debt that could have been growing since January, without my knowledge.  The convenient online payment site didn't recognize my license plate number, therefore I had to click through various website links to find the number of whatever government office I should call.  Since the days had melted into each other, having been inundated with tangles of newness during my beginnings in New Hampshire, I naturally forgot that it was Sunday.  The Massachusetts official who answered the phone naturally kept his irritation within his voice as he said, "And you're calling on a Sunday?"  I ignored his native cranky tone and thought to myself, typical Massachusetts, and forged ahead in making my case known in the most graceful and friendly manner possible, sticking with the facts: I had received a bill, couldn't seem to pay it and couldn't renew my license because of it.  There must have been something in my affect that grew on him which caused him to ask towards the end of the conversation, "So you moved up to New Hampshire?" I told him I had, and that I was here for school - I may have even told him my penchant for Live Free or Die Plates. "Because you seem like a pretty nice person," he said, "and I hate to lose the good ones!"  I laughed.  Oh.... you.... 

War/Peace

A sign posted in Copley Square, after the Boston Marathon bombings

"At Great Barrington, a militia of a thousand faced a square crowded with armed men and boys.  But the militia divide was split in its opinion.  When the chief justice suggested the militia divide, those in favor of the court's sitting to go on the right side of the road, and those against on the left, two hundred of the militia went to the right, either hundred to the left, and the judges adjourned.  Then the crowd went to the home of the chief justice, who agreed to sign a pledge that the court would not sit until the Massachusetts General Court met.  The crowd went back to the square, broke open the county jail, and set free the debtors.  The chief justice, a country doctor, said: 'I have never heard anybody point out a better way to have their grievances redressed than the people have taken.'"  - The People's History of the United States Howard Zinn

The above concerns Shays' Rebellion (late 1700s) - poor farmers vs. Boston elite - carried out in Western Massachusetts.  It's easy to forget that at one point in time, the United States was one mess of a country, and that "rebel groups" could have included some of our founding fathers as they fought against our British government.  Then there were loyalists fighting the patriots.... democratic-republicans against the federalists.  What I was reminded of recently, by a friend, was that some of the founding fathers were under 25 when they were deciding the way this country should go.  There was a time when there were consistent slave rebellions, farmer rebellions, and people standing up for the interests of those without much land, or without human rights.  Reading about the slave ships made me lose my appetite.  Reading about the people who first arrived at Jamestown, and how their numbers were reduced from 500 to 60, how some were eating each other or corpses, makes me wonder why on earth we didn't befriend the Indians and begin a nation together.

To read about how closely people were tied to government is especially interesting, as I feel so disconnected from any kind of political decision.  I don't know who the mayor of the town is, don't vote in local elections, and find it hard to know what is really going on in the politics of this country.

"It was Thomas Jefferson, in France as an ambassador at the time of Shays' Rebellion, who spoke of such uprisings as healthy for society.  In a letter to a friend he wrote: 'I hold it that a little rebellion now and then is a good thing... It is a medicine necessary for the sound health of government... God forbid that we should every be twenty years without such a rebellion... The tree of liberty must be refreshed from time to time with blood of patriots and tyrants.  It is its natural manure."

Rebel uprisings.  Tyrannical government.  We were left to ourselves to figure these things out.  But what should be done now that our weapons have progressed and seem to threaten the whole world more easily? I wish that people would just move to which ever side of the road they agree with, and we could solve things perfectly diplomatically.

When I heard the bombs go off at the Boston marathon, I was shaken by how scary insecurity feels and felt angry that someone had disrupted the general peace that we can usually count on in public spaces - especially during such events as the Boston marathon.  At the time, I had a student from Syria in my class.  After seeing the hundreds of men in uniform protecting the city of Boston, and feeling that sense of security again, I wished I could just put them on a plane and send them to Syria to protect my student's city, family and friends from the chaos that has erupted there.... if only it were that easy.  Let's hope Jefferson is right, and that their rebellion is some kind of medicine that they.... may it not take too long to go down and may we figure out an appropriate way to help the people caught up in it.

Slow Down

"When people ask what Aphasia is I say, "............." and if they knew what Aphasia was -- that's it!"

Matt is one of the members of the Aphasia Support group, at the Krempels Center.  His speech is slow and it's not even clear whether he actually has Aphasia.  He may just have slow speech.  When asked which aspect of his life he misses the most, from before his brain injury, he said, "The women."

Another discussion question was, "Who is your hero?".  The woman who began said it was her husband, who had a stroke eight months ago, which left him speechless at first, but his persistent determination to recover has been inspiring.  He referred to his mangled silent self in the hospital as, "I was plotting my return."  He had been a librarian, but the stroke disorganized his letters, words, numbers, and jolted his memory.  "I've got a little more humility in my life," he said, "which I think is a good thing."

"I thought everyone was having a dream.  'Why isn't everyone listening to me? I'm speaking, and they're not.' It took me a long time to realize it was me."  said Henry, who counted on his fingers - 9-10-11-12-13-14-15 years since his brain was injured.  "That's a great technique," said another member, "Counting is a victory."  Henry told him, "I used to be an accountant.  Now all my numbers are gone."

What is so compelling about this population, of brain injured adults, is that they weren't born this way.  They were cruising along, when something happened.  I can see myself in them, which makes their situation even scarier: it could happen to me.  I think about my brain as I'm driving home from my internship, as most of the injuries seem to have come from strokes or car accidents.  Sometimes I wonder if I'll have a stroke.

"Life is so much faster.  No one has time to listen to us." said one of the members.  This always frustrates me about the Western lifestyle, in particular.  London's big tourist attraction is a clock.  We are obsessed with time, and it's only gotten worse the more technology we've created.  I love technology (I mean, I have a blog, right?) but I hate how obsessed we've gotten with it - and how it's made our lives even faster than they should be.  It's true.  We don't have time to wait for someone with Aphasia to find the files in their brain in order to finish their thought or sentences.

I learned today that Voyager One has finally left the Solar System.  What if we learned of other life forms out there?  How would that change our perspective on ourselves?  What if another life form finds our mash-up 8 track that we've sent them and throws it into their burning planetary river thinking, "Sheesh.  That sucked.".

On the ropes course the other day, I asked, "How do you deal with frustration?"  "You win."  "You win?"  "Yeah, when we were successful, the frustration went away."  "But I'm a loser, what do I do?"  "You need counseling."  "No I don't, I'm fine.  I just am not good at this, what do I do?"

My group told me I needed counseling and that I was in denial until they saw what game I was playing.  We're not good at everything!  And why the competition?  You WIN to beat frustration?  What if you DON'T win?  What happens then?

Slow down, you're moving to fast... in the words of Simon and Garfunkal.  Gotta make the moment last.  On the way to my internship this morning, to work with brain injured adults, I heard a doctor on NPR talking about his work with kids who had been diagnosed with brain cancer.  He said that the thing about kids, is that they're so focused on the present: whether their parents are happy, or on the dog that just came into visit them.  It breaks his heart so much to tell half of these parents that cancer will take their child, that he has made it his life's mission to beat cancer.  Parents have commended him on making the end of their child's life as beautiful as their birth.  When I was in the hospital for three weeks, as a two year old, getting my lymphnodes drained, the nurses loved me because I was all smiles and holding a pacifier in each hand with IVs in my arms and legs and a huge lump on my neck.  I hope I still have that same spirit.

These adults are dealing with frustration through humility.  They are supporting one another because they have to cope with what they have.  "I couldn't talk for a year.  It's degrading." said one of the members, who had been the mayor of his town and active in politics prior to his accident.  But he was positive as well, "It gets better," he said, "I am a perfect example - it can come back.  It just takes time."

We are stardust, we are golden - as Joni Mitchell says.  There is so much room for gratitude if we let it in, I love that.  Let's do it.

Breaking the Rules

Sometimes class feels filled with tedious questions about protocol, whereas, in one of my more adventure-related classes this was typed on one of the slides:

No rules works all the time.

Too much planning stresses me out.  I asked my brother for directions to where he and my family were on the Cape one time and he said, "Follow signs for The Cape."  When I drive somewhere, I just need to know the routes or the general direction - not every left or right turn.  Sometimes it feels like people are saying, "So, what if there's no street sign at the intersection, but there hasn't been a sign that says we need to turn right for the same route?  Do we still go straight?"  YES!  KEEP GOING!

If there's a detour, should we follow it?
If we turn down a street, and there's a dead end, should we try to keep going?
What if the light is not turning green, but it's night time, and no other cars are around?  Should we go?
What if I'm holding a coffee and eating a sandwich, is it okay to take my hands off the wheel for a second?
If the speed limit is 65, would I get a ticket if I go 67?  What if everyone is doing 80?

Sometimes there is an obvious answer - YES FOLLOW THE DETOUR - and other times there is not.  This is where ethics comes in and some conversations involving ethical decisions are more interesting than others.  What if your client's girlfriend is standing outside with a gun, and the police say they can't do anything unless something happens, do you let them leave?  One of my professors did.

This same professor said that one of her big breakthroughs was when she realized that the clients she was working with had lives.  When I sit in class, I can imagine one can get so caught up in organizing that they the bigger picture.

Meanwhile, back in Adventure Therapy class, I lost $2.10.  An auction was being run by my professor.  What were we bidding on?  A $1.00 bill.  The winner takes all, but the second and third place people still have to pay.  What?  Right.  Best game ever to play if you're a professor.  You could go home with a little extra at the end of the class.

He started with a $1.00.  For the first round, three people played, eventually bidding $1.00.  What happens is that when you're bidding, you get to a point where you can't afford to lose.  Or, you start thinking, "Well, I'd rather lose $.50 than $.75, if I get the $1.00."  The other problem is that, you're not exempt unless you were the fourth person bidding.  The next round was an auction of $3.00.  I was at $2.10 when I decided to stop, but the other two people kept going until $3.55.  The person who won actually lost $.50, but that's less than my $2.10.  The second place person was the biggest loser: $3.50 or something like that.

Human behavior.  What would YOU do?  Rather than sit and ask question after question, we play games.  Games quietly pull us out of our social selves and might begin to scratch away at our true selves.  Family dynamics come out as everyone is absorbed in an activity.  Suddenly your favorite uncle is pushing you out of the way to get a touchdown, your mom is changing the rules so that she doesn't lose, and your normally silent friend has proven himself the smartest in the room.  I read a quote from Plato once that said, "You can learn more about a person in an hour of play than a year of conversation."  We get so caught up in the game, we drop our cover.

Apparently my professor facilitated this same activity with a corporate group at a conference and ended up with $580 at the end.  What?  Yes.  He gave it to the service crew and they had the most awesome beerfest the last night.  Where did my money go?  To a student/friend who went to a conference over the weekend.  If only all gambled money went towards charity.

Life is about values.  We speed because we're keeping up with traffic, we go through red lights because it's night and no one is around, we text while we're driving because we care about communication.  Values are constantly being juggled and balanced: THAT'S LIFE.  It's one big grayscale, but that's what makes it so captivating... so stop talking about the rules and trying to organize everything, people....

Out of the Flames

14 years old, Camp Susque, Look Out Mountain

We were told, at the camp I went to, that it was started around a fire - a few men sitting around, talking, and contemplating how staring into the flames opens people up.  That cackling orange that starts out small and slowly builds, eating up all of the materials in its path, becoming bigger, roaring, and welcoming you.  Your face and hands are warmed, trickling down to your feet.  The attention is no longer on you or anything else; the fire has eaten that, too.  People might even start singing in front of each other.  Stories are shared, thoughts and questions are thrown around, or people might just stare and stare into the mysterious combustion happening in front of everyone.  

The other day I had the rare opportunity to facilitate ropes course activities and then fire building.  This was one of the tasks that my group of 13/14 yr old girls (8th graders) had to do as a part of a SHIPWRECK initiative where they imagined they were stuck on an island and had to save themselves: build a fire to boil water, catch a couple fish in the pond, build a shelter that can cover one person, and create an SOS signal.  

So, when you light the match, you really want to put your hand around it to protect it from the wind.....  

No, not on top of it.  See what happened?  

See, the flame will go up and burn your hand... 

You also want to find lots of little thin brush to feed the fire... 

Birch bark is a great fire starter.... 

What do you think?  Do you think you can rest the pot on those sticks?

They had no idea what they were doing.  Sticks were piled on top of each other, live branches were brought over, green leaves and grass were some thoughts for fire starters - so I threw in some tips...  

So, really what you want to do, is make a teepee inside a log cabin...

Remember, the fire needs oxygen, so make sure you create some space...

You guys have the extra challenge of wood being damp today...

Dirt will kill your fire, so it's good to brush it off the bark...

Fire ties most of my favorite memories together.  There is something about those flames that reconnect us to the mysteries that surround us, the power that exists, our ability to create, and the importance of our history.  Fire has caused me to stay up until the early hours of the morning getting to know people, reconnect with old friends, or celebrate a new year.  Shabbat was celebrated through dance around a fire on the shores of Lake Victoria, travelers were met in the desert of Chile, and Hogmanay (new year) was celebrated in a village in Scotland, or friends were made, for life, at camp.  

"The tendency to wander in wilderness is delightful to see.  Thousands of tired, nerve-shaken, over-civilized people are beginning  to find out that going to the mountains is going home; that wilderness is a necessity; and that mountain parks and reservations are useful not only as fountains of timber and irrigating rivers, but as fountains of life."  John Muir, Our National Parks, 1901

Imagine what Muir would say now, since he considered people over-civilized in 1901.  The faces of the girls who made that fire revealed some of that joy that we are inherently prone to when building a fire, riding an ocean wave, arriving at the top of a mountain, or gazing up at the stars.  Our identity is not in our computer, phones, or cars that we buy, but out in the natural world.  I suspect it's because we didn't create it, and therefore, it will never cease to fascinate us.  Imagine what happens when we separate ourselves from it for too long.

Campy, Kumbaya, touchy-feely, bonding moments, heart to hearts... in our culture, we tend to use these words in order to make light of an experience.  But isn't this what we actually want most?  Don't great ideas come from these experiences?  Don't we feel most connected to others during some of those moments?  Why do I have to explain through research why nature or adventure experiences cause change in people's lives?  How did we get so removed from where we came from and what is that doing to us?

"I am because we are."  I learned that in Uganda, a culture that often thinks in terms of it's community.  I think the pull of the fire, that naturally causes people to make a circle, converse, and be present with each other, reminds us that we don't exist only because we think - we exist because of other people, because of connection, relationships, and this world that let us in, and if we don't maintain our connection with each other or that world, we begin to be alone with our thoughts and become isolated in a chaotic and confusing universe.

"...the human species had become 'autistic' in the way they relate to the natural world.  The origin of this autism is reasoned to be associated with Descartes' notion of mechanism.  Derived from Cartesian dualism, in which mind and body are perceived of as clearly distinct from each other, mechanism is the doctrine that all living things are in essences just machines... Nature was viewed as a machine with working parts that could be dissected, explained and understood... People have become deaf to its voices, stories and sources that nourished their ancestors in primitive societies."  Thomas Berry, 1988

Our thoughts are not enough, it takes a fire to pull us out of ourselves.

Students the same age as me in the above photo, getting ready for 9th grade at La Vida, ADK (2011)