The Old Lady

Daisy is my therapist.  I started seeing her when I was in 5th grade, right after my dog had been killed by a bear and my other cat had died of kidney failure.  I named her.  I thought it was a great name for a cat. 

In her old age, she's become fond of people.  When she was younger, she used to hide and spend seconds on your lap.  She was a hunter, too, and brought us gifts.  But now, when I sit down next to her on the couch, a paw slowly taps me on the arm - if I'm not paying attention - and her glassy eyes ask to be pet.  She soon makes her way onto my lap, purring her mind out. 

When I see her just sleeping on a chair, I worry for a second if she's passed on.  She is eighteen years old and frail.  Her fluffy coat hides her bones well, but you can feel each one as you pick her up to hold her.  It takes her a few moments to realize where she is again, if you transplant her from where she's sleeping to a new spot.  She sits up on the couch, staring straight into space, her eyes half open, looking like she's recapping her steps and wondering why she's sitting where she's sitting, as if to say, "Wait a minute, now just wait a minute. A moment ago I wasn't here, I was there.  Where am I now?" When she lifts her foot to scratch behind her ear, she often misses but keeps kicking, slowly.  She also can often be found curled up on the coffee table rather than the couch. 

When she meowed loudly from our landing, the tone of it sounded desperate, making me wonder if she was leaving this world.  After further questioning, I discovered she had to use the kitty litter.  However, she didn't actually use the kitty litter, she used the concrete surrounding it, yet, with her arm outstretched, she continued to carefully scrape and collect the invisible litter. 

As I closed the basement door, leaving home again, Daisy ran up the stairs after I had said a final goodbye from the top of the stairs.  I picked her up in my arms one last time, gave her a kiss and then placed her gently back on the stairs and watched her slowly hop down before I shut the door.  

It gets harder to leave home. 

Marathon

Low sounding thunder echoed through the streets twice.  It sounded like the sounds you hear under a bridge, when the heavy traffic is speeding above you, as the wheels move over metal planks.

Baboom…. Baboom….

A woman on the news compared it to transformers.  I looked up at the sky and around the tall buildings in search of the source.

We ignored our questions, and walked towards Back Bay station, a couple blocks away.

“Excuse me!” said a policeman who pushed his way, running through the crowd.

Dad was tired and sometimes tears came down from his eyes along the way, since his time had been so disappointing.  Hoping to break 3 hours, he had come in a little after 4.  After having trained for months and been looking forward to the marathon for awhile, this was unfortunate.

I took a picture of all the people heading up towards the subway from Dartmouth street.  I didn’t know that on the other side, people were running for their lives, or to help people, or to find a way out of the city.  As I crossed the street, I overheard a man on his cell phone, “Yeah – what the hell happened?”  I kept walking but also kept glancing back at him, half of me wanting to know what had happened, but also not really wanting to know.

I looked around at the people walking into the subway station.  But before we entered, we approached the security guard in front.

“Two bombs exploded downtown.  They've called in the military.  I wouldn't get on that subway.  Just saying, I’m being nice.”

I looked at my tired father and worried that we wouldn't be able to get out easily, but didn't want to make him walk.  We all looked at each other, trying to decide what to do in those few seconds.

“Ah, he doesn't know what he’s talking about,” said my brother.

So we decided to get the first train we could out of there.

We entered the Back Bay subway station.  I looked around for signs of chaos, trying to listen in on people’s phone conversations.  I was walking quickly to buy a subway pass, while my brother walked quickly to the bathroom and my mother helped my father catch up with us.  There were some transit police roaming around the gates, but I didn't want to know anymore information about what happened.

“Shit.” I said, in front of my family, while waiting anxiously for the next subway train to push through the tunnel.  My brother had just read a text from a friend, but only said outloud, “Man, if what Kevin is saying is true…. something about wheeling people away without limbs?”

“I don’t want to know.  Don’t tell me.”

We had no idea what it had been, that sound we heard twice.  I just wanted to get home.  Suddenly the city felt dangerous – packed with so many people I don’t know, so many people who could do something crazy.  Suddenly I was in the US, conscious of potential enemies who would look to hurt a booming east coast city.  The buildings seemed so big now, the tunnel that I was in seemed like the perfect place for an explosion, and everything was moving so slowly.

A train pulled up.  We walked on and sat next to people who were just sitting on the subway, as usual.  Then the guy next to me said, “Excuse me, but did something happen?”  I can’t remember what I said to him, but probably something along the lines of that we were at the marathon, and now we were heading home, and that’s all I wanted to know.

The doors of the train remained opened for longer than usual, so it seemed, and a voice came over the speaker saying, “This train will not be stopping at Downtown Crossing.  This train will not be stopping at Downtown Crossing.”  It began to move away, out of the underground to where I could see a view of the Copley Square buildings.  The sky was blue and everything seemed normal before we popped back underground again.

I was glad that we sped through some of the stops, but were we heading away or into where something had happened?  At the next stop, a couple of women and their daughters got on the train, carrying shopping bags.  They were on their phones.  “What is going on?”  They asked us.  The train was quieter now, as people were trying to overhear people’s answer to that question, or on their phones themselves.  A stop or two later, a woman had an image on her phone and was staring at it.  She was sitting next to my mother, who looked over her shoulder to see.

My mother gasped and raised her hand to her mouth, “It’s the Finish Line!”

I could hear a crack in her voice, signaling tears in my eyes immediately.  She went on to say, “Look at the people!  Oh my gosh….”  Shock was pushing them out of my system, my body couldn't hold all this water.  Immediately I thought about the announcers, the spectators, the tired runners, the people selling t-shirts, the security guards, medical people, and everyone who I had just seen standing around that area.  Were they……. what were they?  Were they okay??

I leaned on my father, the stumbling marathon runner, and didn't know what else to do.  I was thankful that we weren't in an emergency room, or worse, on my brother’s birthday.  We left the train, we walked home.  We made it home.  We were home.  That was all I had been wanting since we heard those sounds and it had happened.  I had never been so thankful to cross the threshold of that Somerville apartment, together.

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.