Tuesday, July 28, 2009

Connections I

Brain injury is the loneliest thing in the world. 

 

It’s no wonder why.  The list of deficits that can push people away itself endless.  But it’s more than that….

 

The survivor is the only one who truly can fight the brain injury battle.  Though doctors and therapists may help, family and friends may support, but the real fight is up to the survivor.  No one outside of the patient themselves can know what is going on.  Survivors may look perfectly normal and still constantly struggle with unseen obstacles.  This can lead outsiders to misunderstand, question, or even deny the problems.  Fighting the deficits takes all of your energy and convincing the doubters is even harder. 

 

Every day is a new battle.  Wave after wave of obstacles, deficits, trials and challenges crashes into you.  Perhaps most painful, some friends won’t be able to understand and will drop out of your life.  Do not let this discourage you.  You will make new friendships with people who do understand, can relate, and offer genuine support.  People who will love you for you

 

This is fine to say, however, because of aforementioned problems connecting with and relating to others it is unfortunately easier said than done. Overcoming trust issues and the profound sense of separation may seem like an insurmountable challenge.   However it is vital that you do just that.  It will take a little effort, but with guidance, suggestions, and hints it is possible. 

 

But if brain injury is so socially debilitating and isolating how exactly does one meet new people?  How does one get back in the swing of things post-injury? 

 

Humans are gregarious – we’re herd animals.  It isn’t emotionally, mentally, or physically healthy for us to live in isolation.  In many entries I talk about the benefits of community support, a strong social network, and the importance of reaching out to others.  Every word is true.  Strong social networks, community support and involvement and family love and encouragement make all the difference in improvement.

 

Not only does social interaction help survivors to improve, having more social interaction is part of the improvement.  It is our natural state to be part of a herd – it only follows that damage drives us towards isolation.  Like any other damaged area of the brain relearning the ins and outs of social interaction, takes practice and time to heal.  And just like any other part of rehabilitation we must start off slowly and ease back into things.

 

Because isolation and loneliness is such a huge problem for so many survivors I feel that it is an important issue to address.  In this next series of entries I will offer suggestions for building social skills, outline a plan for building up a strong social network, and finally offer ideas on places to go to meet new friends and reconnect with the community.

 

Wednesday, July 22, 2009

Can't See the Forest for the Trees


I cried on the flight down to South America. 

 

Sliding into my seat I glanced out the window at the dark airport hanger.  I had every reason in the world to be happy, excited, and expectant but as I took my seat I felt none of the standard rush freedom of embarking on an adventure.  Instead, the weight of the world settled on my shoulders.

 

Dark thoughts wormed their tenacious little fingers into my brain.  Sure I was going to get out of the country, learn about different cultures, have adventures, new experiences, and so on and so forth.  Yeah, I’d extended my trip to 6 months to learn Spanish, and all that. But it was more than that…

 

No one was going to miss me.  My friends didn’t help me move, my boyfriend didn’t even help me move.  This had been the last day I was going to be in the city for 6 months and nobody even wanted to hang out with me.  There probably wasn’t one single person who even cared I was going.  I mean sure I had lots of acquaintances did I really have I have one real friend?  They


 probably wouldn’t even notice I was gone. I thought, bitterly as tears slid soundlessly down my

 face.

 

The lack of support was my own fault.  It had to be.  Maybe I was just unreasonable wanting people to be there for me or care about me.  Why would anyone want to be there for me anyway?  I was a horrible person who couldn’t even control her emotions – I yelled at movers, threw tantrums when she didn’t get her way, and hurt people without meaning to.  A seven-year-old knows better than that.  No wonder no one wants to deal with me.

 

I could go to South America but I wouldn’t make real friends there either, I was doomed to be forever completely and utterly alone.  Staring intently out the window I turned my head even further from my neighbor – hoping desperately she didn’t notice my glistening cheeks, didn’t see my face crumple at this new horror.  I couldn’t distract myself with the in-flight movie, I couldn’t read a book; I was too far-gone to pull myself out of this tailspin – all I could do was to focus on the misery.  No matter how long the day had been I wouldn’t be able to escape into sleep, I thought glumly.

 

At least I could be warm trying. Tearing the plastic wrap off of the little airline blanket I pulled my knees into my chest.  I shifted this way and that attempting to situate myself in a way so that all of me fit under the miniature courtesy blanket.  Well, this is about as good as it’s going to get I sighed after a few minutes and shoved the handkerchief-sized pillow between my head and the side of the plane.  Within moments I was fast asleep.

 

When I blinked blearily awake sunlight was shining through the plane’s thick double-paned window.  It was morning – the night’s dark thoughts weren’t even a distant memory – I had slept through almost the entire flight. I looked around the cabin, yawning my way back to the real world.   I hadn’t realized how tired I’d been, I could still use a few hours more sleep but you never got good sleep on planes, did you.  As I looked out the window that familiar thrill of excitement filled me.  We were over another continent.  I was exploring new lands – going on an adventure!

 

Fatigue is the most common complaint of survivors.  For people who haven’t experienced it, fatigue can sound innocent enough; after all, it just means you wear out more easily.  So you get tired, so what? 

 

Unfortunately it is much more dangerous than that.  Fatigue has many faces.  It can open the way for any number of deficits; throws your judgment off, plays on insecurities, everything becomes more difficult, thoughts confused, learning impossible, the list goes on.  One of the most insidious tricks fatigue will play is how quickly it comes – often a survivor won’t even realize they have pushed themselves to far until it is too late.

 

The morning’s brain injury episode had sucked every drop of energy out of me without my even realizing it.  Because I had had so much to get done that day I shoved the incident and its emotional drain to the back of my mind.  Putting on the afterburners I soldiered on through, tying up all of the last-minute loose ends. 

 

Emotional meltdowns are the most draining thing in the world – worse than running a marathon, worse than studying neuroscience, worse than babysitting a room full of toddlers with ADD.  It is as if someone opened the floodgate and let your entire reservoir of energy spill out with the emotions.  Any outpouring of heightened emotions can be draining but the stressful conflict-driven brain injury episodes are the worst.

 

Somehow this time, fatigue had erased all positive or even rational memories.  It had siphoned all happiness out of my life and thrown me into some nightmarish alternate reality.   Of course I had wonderful friends who I was going to miss terribly!  I’d spent half the day on the phone.  If I hadn’t been running around like mad trying to get everything done I might have been able to meet up with more them than just S.  But because relationships romantic and otherwise can be difficult for survivors, and because I have had problems with this in the past this is a fear of mine.  Fatigue had played on this insecurity, made me forget all of the good, and managed to hide the fact that it was the culprit.

 

As soon as I recharged my battery with a little sleep the fatigue, irrationality, depression, and all the rest vanished into thin air.  But the terrible part is that when you are in the thick of things it is all but impossible to see a way out of them.  Your fears loom, obscuring the reason behind the problems, good thoughts, or any glimpse at perspective.  You really can’t see the forest for the trees.

 

As always, prevention is the best solution.  Keeping a regular schedule, getting enough sleep, keeping away from stressful situations are still the best ideas.  There will of course always be moments where things don’t go according to plan. Thankfully the magic bullet for brain injury is never far or too hard to come by – Sleep.  Sometimes it can just be hard to judge when you really need it.

 


Knowledge is power – the more you and your friends and loved ones know about how to manage your brain injury the better off you all will be.  Talk to your family and friends about fatigue.  Ask them if they would help out by suggesting naps or taking a little rest resting when you get irrational, or seem to be acting out of character.   It isn't asking much but at moments like this getting an outside perspective in these moments can be exactly what you need.  Losing one's way in the dark forest of brain injury is a nightmare, but with a little guidance it is easy to escape - all you need is someone to guide you towards the path out - sleep.


 Photography by Dennis Lo

 

 

Monday, July 20, 2009

Moving Meltdown

“Where’s your bathroom?”

 

Without waiting for an answer, the coarse Dominican mover pushed past me, clomping into the apartment.

 

“You’ll have to wait.  Your partner’s still in there,” I said sourly, crossing my arms.  Fifty minutes late, and the first thing they do is use my bathroom?  They’d better not count this as moving time – if they went over an hour I’d have to pay the $350 extortion fee they charged!

 

My grumpiness wasn’t entirely their fault.  I was on edge; it was my last day in the city.  And I wasn’t just wrapping up loose ends – I still hadn’t tied half of the things that needed to be done.  The list went on and on.  I didn’t have one spare second before my flight that evening. 

 

Poor planning – it creeps up on you.  Suddenly, at the last minute there are a hundred things to do you haven’t even thought of.  But if everything went smoothly, I’d have enough time.  If…

 

Waiting for the movers to get to the apartment my mind churned.  Blame it on inflexibility but it really irks me when people are late – it’s disrespectful, unprofessional, and downright rude. It’s kind of like saying: my time is more valuable than yours – you should run on my schedule because I have more important things going on.  With a concerted effort I pulled myself up short.  Be reasonable, I sternly told myself; it wasn’t the movers’ fault I planned such a tight schedule.

 

When the disheveled, tobacco-stained workmen arrived late I managed to bite my tongue.

 

When they walked in and took back-to-back bathroom breaks, I gritted my teeth – yelling at them wouldn’t speed anything up.  Then they started moving my things.

 

“Be careful with that!” I said again and again; as I watched the movers carelessly toss my possessions into huge wheeled-containers to move into the elevator.  Each time the main mover told me not to worry in his thick Dominican accent.  Clearly not listening, he seemed to get increasingly careless by the minute.  Cringing, I watched helplessly as his gloved hands crumpled my parchment Danish floor lamp.

 

As the elevator doors shut, I gave the apartment one last once-over for things to put in storage, grabbed my curtains, and raced down the stairs.  We needed to get over to the storage facility as quickly as possible – I didn’t want to pay them for another hour!

 

I ran up to their truck.  They were still packing everything into the back but the cramped cab looked as if it would barely hold the three burly men.  Where was I going to sit?  “When are we leaving?  Where should I sit?”  I asked, still worried about the time.

 

The shorter balding man I took to be the leader gave me an annoyed glance and replied in a surly voice. “We’re not taking you there.”

 

This caught me completely off guard.  The storage facility had assured me the movers would take me; the moving company had backed them up.  I had counted on the ride – I hadn’t even written the storage place’s address down, let alone directions there.  “But … but how am I going to there?  They told me you were giving me a ride…” I

 

“Who told you that?” the man sneered condescendingly.

 

 “The guy from your company promised you would.  How am I supposed to get there when you do?  I don’t even have the address!” 

 

“You can take a taxi or the subway to XXXX.  Do whatever you want but we can’t take you,” he shrugged me off, turning back to the truck.

 

With that my helplessness vanished.  Anger replaced it – they were taking advantage of me. “Your company promised you’d give me a ride.  You’re late, rude, and now you won’t even keep your word?”

 

“Hey lady, I don’t know what your problem is but we aren’t a taxi service,” with that he pointedly turned back to the boxes.

 

Something inside me flipped.  Shaking, I exploded into an unthinking ball of fury. I can’t believe you are acting like this! F you!  F you guys.  You are a bunch of F-ing A-holes!!!”

 

Nobody has ever talked to me like that before you little B….”

 

I searched for the worst thing I could possibly say.  “I … I … I hope your mother dies!”  With that I turned my heel and stalked toward the subway.

 

I had walked the route hundreds of times but with the thick smog of anger clouding my brain I took a wrong turn.  Blocks out of my way enough of the rage had dissipated for me to realize my mistake.  Figuring out where I was and how to get to the subway required me to use my mind and as my brain started working the towering inferno of anger was gone leaving behind a few smoldering embers.  Standing waiting for the train I realized the sheer stupidity of my outburst.

 

The movers had all of my things in their truck.  If they wanted to, they could damage or destroy any or all of my things, they could take as long as they wanted, or worse yet just never deliver my things….  I was at their whim.  I had to call the storage company and tell them my side of the story.

 

There wasn’t much reception underground, but I figured the sooner I called the better. Halfway through telling the man on the other end the story reception cut out.  Moments later my train arrived – I’d call back when I got to the moving place. 

 

When the train pulled into the station, I had a message.  It was the moving company.  The manager was convinced I had hung up on him and was furious with me.  When I called back he didn’t calm down.  He didn’t want anything to do with me. 

 

It took a lot of work but the manager had convinced the movers to take my things to the storage facility and drop them off at the dock.  I would have to figure out how to get them up to my storage locker on the fifth floor myself.

 

When I tried to tell my side of the story and plead my case, the man told me I was lucky he managed to get them to take my things there and slammed the phone down.

 

Fighting tears back I reached the storage facility.  The man at the front desk took one look at my red eyes and trembling lip, and in the most compassionate voice possible asked me what was wrong.

 

In the face of opposition it is easy to keep up a brave front.  If there is something to struggle against or focus on then holding off the tears comes almost second nature.  But warmth, caring, and understanding open the floodgates.  In a mater of moments tears were streaming down my cheeks and I was trying to choke out my side of the story.

 

I had overreacted but they had been late and rude and unprofessional.  I was upset.  Now the company was leaving my things on the loading dock!

 

Everything would be okay the man assured me.  He would take care of everything.  Movers could be rude – it was unprofessional to be late.  It was even worse to go back on your word. He would make sure the movers finished the job.  That is what they were being paid for – it would look bad for the company if they didn’t.  With that he phoned the moving company.

 

The movers arrived; finished the job, and I apologized for my behavior.  I am extremely thankful that that wonderful man was there to smooth everything over, but I’m not sure what would have happened if he hadn’t been.

 

*  *  *

 

Irrational, uncontrollable fits of rage – head injury “episodes” as I refer to them – are one of the most terrifying aspects of brain injury.  It feels as though you are swept away in the grip of your emotions.  While they hold you in their grip you are powerless to act of your own volition.  You watch yourself say terrible things that you would never think to utter of your own accord.

 

Heightened emotions, emotional liability with turn on a dime mood swings, inappropriate language, and problems with anger are common aspects of brain injury.   Closer to the injury the survivor may not even be aware he is demonstrating this behavior, but it is important to be aware that these are merely aspects of the injury, and not the survivor.  The best thing to do is to redirect the survivor’s attention, remain supportive, and above all not to take anything the survivor says in their outburst to heart.

 

Thankfully for me these episodes happen with less and less frequency.  I have not experienced an episode of that magnitude for years but they are never good.  The usual suspects – heightened stress and lack of sleep are contributing factors but the outbursts are unfortunately quite unpredictable. 

 

By all means try and keep on a regular schedule, get enough sleep, do what you can to lead a stress-free life, and stay away from overwhelming situations.  However, I know all too well that this is not always possible.  In retrospect, the majority of my episodes happen when I feel overloaded, as if I have to do everything alone – fight for myself.  Having a strong support system is essential.  Be it friends, family, brain injury support groups, or other organizations, having people in your life who understand, can help redirect and diffuse situations like this in your life may help prevent a potential next one…

 

 

 

 

 

Monday, July 13, 2009

The Call of the Open Road

Maybe I should just move to Buenos Aires and stay down there for 6 months – that way I can just use their movers,” I said disgustedly.  All morning I had been trying to find movers – it seemed like none of the companies could come on such short notice.  I was so sick of trying to get everything organized.  As the words left my lips they hung in the air, taking on a life of their own.

 

A looked at me, her eyes wide, “that would be amazing!  You should do it.”

 

“Well,” I thought about it for a moment running through the concrete reasons against going.  “I have a boyfriend, I mean 6 weeks is one thing but going for 6 months?  No, I really should get back…” I finished weakly. 

 

“You’re making plans around your boyfriend.  The same boyfriend who can’t even be bothered to help you move?  Who hasn’t even asked to stay with him while you are moving?  Really?”  With a laugh, she shook her head in disgust.

 

“Well, I guess you’re right.  But I really do want to make this relationship work…”

 

“And you think he’s making an effort?  You think he’d do the same for you?  Just go, you don’t have a job right now, you don’t have kids or a family – go while you can.  How many more chances will you get to do something like this?”

 

Her enthusiasm was infectious.  I felt the seductive tug of adventure pulling at my heart, filling my ears with the call of the open road.  Trying my best to ignore it I clung tenaciously to hold onto some shred of reason.

 

“Whether he would or not, I gave my word I would talk to him about things like this and before I make any decisions I need to talk to a few other people too. I did just write about how brain injury survivors and my advice was to run ideas past friends.  It’s probably a good idea to take my own advice.”  

 

 

The first person I called was my close friend S.   Being one of the most adventurous, knowledgeable, worldly people in my acquaintance she really knows the ins and outs of travel.  In addition to her fun spontaneous side she is extremely pragmatic, has the answer to everything, and gives excellent advice.  I was pretty sure that she would think it was a good ideas and she’d certainly have helpful suggestions.  If, on the other hand, she thought it was a bad idea or too dangerous then I would scrap the idea and just stick to my original trip.  As much as I love adventures safety is a priority.

 

I told her I was thinking of extending my trip to 6 months and moving to Buenos Aires.  “Do you think that this would be a good idea?”

 

“Why Buenos Aires?” she asked.

 

“Well, I have heard that it has a rich literary tradition and is a great place to write.  It is also has a very European feel to it so it would be quite such a culture shock.  It is also supposed to be one of the most beautiful cities in South America.  I can write from anywhere.  I could learn Spanish; learn about another culture, the cost of living was lo

wer…. What do you think?  Do you think that is too dangerous?”

 

“I look at life as a series of experiences.  If you were talking about somewhere in Columbia I would discourage you but from what I understand Buenos Aires is supposed to be reasonably safe.  I think it sounds like a wonderful opportunity….” 

 

I let out a private sigh of relief.  One down, two to go….

 

As soon as we hung up I called my father.  I love and respect him more than anyone in the world.  Though he lives in Kansas and I don’t get to see him on a regular basis, South America is a good deal further than New York.  I was all but sure he would support me but having his blessing is important to me. If he didn’t want me to go then I would put any idea of moving to South America out of my mind without question.

 

My instincts were not off.  The instant I told him he enthusiastically gave his wholehearted support.  He thought it was a wonderful idea and sounded pleased that I was going to study a new language.  I hung up the phone energized and expectant.  Things were moving forward so quickly it was almost as if moving to Buenos Aires had been the plan all along.

 

There was only one left – J.  My roommate rolled her eyes, but I had promised.  He was the dark horse – I really wasn’t sure what he would say.  If he didn’t want me to go, then I would

 respect his wishes – I had given my word.  Heart in my throat I made the call.

 

No answer.  Fantastic, more time to think, and think I did.

 

J and I weren’t particularly close.  Though everything was wonderful when we were together that happened barely twice a month.  Maybe this could be another reason to go.  Missing each other could bring us closer and actually strengthen the relationship. As the saying goes – absence makes the heart grow fonder.

 

When J called back a few hours later I gently asked him what he would think of me extending my trip.

 

“Thank you for asking me,” he sounded pleased and surprised I had thought of him.

 

“Of course – you are my boyfriend,” I said, confused.  “I promised I’d talk to you about things like this.”

 

“Well, if it were further in the relationship I would not like it, but it’s fine right now.  You should go.”

The longer we talked the more I felt that this trip really would be good for the relationship.  We would write talk all the time on skype video chat, he would come visit me - it would be great.  


And with that the decision was made – I was going to South America for 6 months….

 

Wednesday, July 8, 2009

Tomorrow and tomorrow and tomorrow

I hung up the phone with the storage company.  $106 dollars a month for 6 months or more, the advertised “free move” was only good if you rented the space for more than 6 months.  Less time than that, their movers charged $350 an hour.  

$350 an hour!?  Seriously?  Putting stuff in a storage facility was supposed to be cheap. Their quote caught me completely off guard.  I had been counting on that free move.  It was supposed to be this easy no-hassle thing – they would move my stuff for free and move it for free no questions asked.  Moments before I had been fine – excited about the trip, and getting everything done.  One phone call and it felt as if my world was collapsing.

I stared despairingly out over the sea of half-packed boxes, overwhelmed by the weight of it all.  3 days ’til my flight left for Peru and I still had to get a P.O. box, forward all my mail there, cancel my phone, tell my credit card I was moving, the list went on and on.  I could have handled it, I could have gotten everything done, but now….  Now the move was difficult – and expensive.  I had to find movers on top of it all – the straw that broke the camel’s back.

I collected myself enough to text some friends and phone a few others to ask if they knew cheap movers, or if they could help with the move, but with this last-minute plea I already knew the answer.  Everyone was busy, out of town, or just didn’t get back to me.  A cold wave of isolation overpowered me.  I was utterly, completely and totally on my own – nobody was there for me, I had to do everything all by myself.  It didn’t help anything that both of my roommates were moving in with their boyfriends.  Boyfriends who had been helping them pack and move the entire time.  It hadn’t mattered until now 

My melancholy was interrupted by a sharp knock on my door.  “All packed and ready for your trip?”  my roommate, A, called brightly, poking her head in the door.

“Almost, I’m trying to find movers now.  What company are you using?”  I told her about the morning’s surprise, the procrastination, and the rest.

“$350 an hour?  That’s extortion!  Doesn’t your boyfriend have a car?  Where is he?  Why isn’t he helping you move? 

“Well, he’s been pretty busy with work and out of town a lot.  He really can’t come today because he’s having a party tonight.  He does have a car but even if he had the time it’s a convertible –not really the kind of car you can move things in…” I trailed off; the excuses that sounded fine coming from him rang false when I said them.

A raised a skeptical eyebrow.  “But he’s not even around for moral support?  That’s kind of fishy.”

“No, nothing like that.  Things are great when we’re together.  He just hasn’t been in many relationships.  He’s really a great guy.  It just kind of sucks... I put everything off ’til the last minute and now everybody’s busy. I don’t know if I can get everything done on my own....

I felt like I had a boyfriend so he should be there to help me, I know he hasn’t been in many relationships but it just sucks not feeling like I have any support.  Then when I start thinking like this I feel guilty because I know it’s not his fault.  If I weren’t in a relationship then I could totally do all of this by myself, but since I am it’s almost harder when I don’t have the support.  What is wrong with me?”  With that the tears started streaming down my cheeks.

“Oh D," she said sympathetically,  "I’ll be your boyfriend tomorrow – I’ll help you move.  You definitely aren’t asking too much.  If my boyfriend had been like this I would have broken up with him a long time ago.  He should be here and be helping you.  He should have been here for you this whole time.  Everything will be okay; you are going to South America in a few days.  We can talk to the movers I’m using and I can help you move tomorrow.”  She reassured and built me up until hiccups replaced the tears.  Giving me exactly what I needed – her unwavering support. 

Support is vital for everyone, but you should always rely on others to help you.  Boyfriends, friends, and family have full schedules and lives of their own.  It is important to be self-reliant and have a strong foundation.  That way you will be able to stay steady no matter what. 

Organization, attention to detail, and grasping the consequences of actions (or inactions) can be terribly difficult for me and for many brain injury survivors.  Somehow I was completely oblivious to some glaringly obvious tasks I needed to get done. Until the last week before I left I had put a few things off, but I was sure that I had taken care of almost everything. When I finally realized how much was left to do I scrambled to get everything done.  When one thing did not turn out how I had imagined and counted on it to be, I was overwhelmed and swept away by a tide of emotional liability.  Thankfully A was there to support, distract, motivate, and help me come up with a plan of action. 

Balance is the hardest thing in the world, but it is imperative for survivors.  Planning, organizing, and taking care of everything in advance is the best solution, however sadly even when I do plan it seems that a ridiculous number of details tend to slip by.  Asking a friend to bounce ideas off of and help with your planning is a huge help.  This isn’t always possible though, and if you do get overwhelmed the best thing to do is to move forward in a calm rational manner.   That way you can take care of things in a proactive, organized way and not get sidelined by stress.