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.

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.