On the Road Again

So I am on the road again, headed south for whale watching, researching delfinotherapia, concentrating on writing, learning Spanish, and most importantly learning and teaching about brain injury. Finally having identified and overcome my residual post-robbery fear of writing in public I have begun filling a notebook with new blog entries which I will post as soon as possible.

As always I am energized and inspired by the thrill of discovery, learning, meeting new people, and new experiences. I look forward to sharing all of my travels and experiences and being better-able to help through them.

I will do my best to keep up the blog through this next month of travels, but wanted to keep you updated as to why I am straying from the connection series. Never fear, I will return to that in the near future....

Easy Breezy (Meeting People is Easy III)

It isn’t just about meeting people. Meeting people is easy. It’s about building lasting relationships.

We’ve been through the easy formulaic ways of starting conversations:

- Pay a compliment

- Make a comment

- Ask questions

- Keep it light

After you have established first contact things can get a little harder. It is often harder for survivors to pick up on signals and cues, it definitely is for me, but it is important to try. Don’t push too hard, suggest meeting up, or doing something. See if a few people in the group want to go out. If they can make it then fantastic, if they can’t, then no worries.

There is unquestionably such a thing as instant connections, but building lasting, sustainable relationships takes time. Brain injury often makes it harder to think on your feet and come up with off the cuff topics. Often survivors are focused on recovery and their entire lives have started to revolve around recovery. To keep things easy breezy the first few meetings and start building a relationship make a list of topics to talk about to give yourself ideas. The weather, TV shows, books, movies, animals, sports, or that sort of thing; just think about it a little before you meet up with your potential new friends. Just try not to let the conversation get too heavy or soul-searching. I have made the mistake of jumping into things too fast too many times. Let me tell you, deep life-and-death conversations are interesting, but don’t necessarily make for the best starter topics.

Easy breezy – you want to be able to relax and have fun with your new friends. Just let things flow naturally. The more people you talk to, the more practice you’ll have, and the easier it will become. Before you know it you’ll be a pro at initiating conversations and building relationships.

First Contact (Meeting People is Easy part II)

The ins and outs of starting a conversation, establishing a report, and basic human interaction is an art that is quickly fading into oblivion.  Thankfully the ideas are ingrained in us all – we just need a few reminders.  While survivors are relearning social skills is a perfect time to brush up on this as well.  Survivors do however, face several additional challenges in this area as well. 

 

In my experience, one of the biggest stumbling blocks for moving past the initial meeting and developing friendships is that of concrete thinking.  It limits the brain’s ability to think “outside the box” Where to meet people, new things to do, places to go, the list is endless.  I hope that previous entries have helped give a few ideas for places to meet people such as therapy or support groups. 

 

Volunteering is another wonderful place to meet people with similar interests and outlooks, and the same can be said for any number of organized groups.  Really you can meet people anywhere:  at concerts or other events, I have even made fast friends on a train.

Still, it is best to start slow with groups you frequent, and branch out once you’ve found your networking “feet,” so to speak.  The “where” is the easy part.  The “how,” on the other hand, now that may take a little more guidance.  How to start conversations, what to say when you do….

 

Approaching group members or people in therapy after class is a good time to do it.  If something someone else said made an impression, compliment him or her on his or her insight or let him or her know what you thought about it.  Another good way is to make a comment about class, "Wow, I had so much trouble understanding X, what did you think of it?"  

Compliments are another great way to start a conversation. There’s no reason to approach people you don’t find interesting in some way.  Don’t give empty compliments, but mention what it was that piqued your interest and if you can follow it up with a question.  It can be as simple as, “those are great shoes, where did you get them?"  People respond to flattery, especially when it is sincere.  However you start it is always a good idea to ask their opinion, or some sort of question.  Questions really get the conversation going.

 

While you are getting started, especially with your first few tries it may be good to take things slow.  Plant the seeds  - keep first contact quick and light.  Talk to a few people after class, maybe exchange emails and suggest maybe getting a group together to grab coffee or lunch next time.  You’re just putting feelers out, first contact.  No rush, no worries….

Everybody is Lonely (Meeting People is Easy Part 1)

Facebook, myspace, twitter, dating sites are a multi-million dollar industry; it seems people are constantly reaching out. We live in a culture of networking.  All it takes is a quick search and you can be in instant in contact with 100 people who have similar hopes, dreams, goals, or interests.  However this easy access does not ease loneliness; instead it seems to increase the isolation. Cyber-relationships and social networking sites are making us lazy and depriving us of human contact. Basic interaction is rapidly becoming a lost art.

 

Brain injury often destroys long-standing relationships and networks.  Not only has the survivor lost social skills, and friendships, but also even those without brain injury have problems forming relationships.   It seems hopeless – everybody is lonely.

 

This pervasive lack of human contact in society is indeed tragic.  However, this gaping hole in our culture works to your advantage. There is already a need.  It is up to you to fill it.  

 

Though there are countless negatives about brain injury it can help you approach life in new ways.  It does take initiative, practice, and a little effort but meeting people really is easy.  You just need to follow a few simple guidelines and you will find friends in no time!

 

 

 

 

 

 

Steps (Connections recap)

So we’ve covered the basics of finding friends.  The building blocks of working on yourself, putting yourself first, suggestions of where to find friends, that sort of thing.

 

Just a quick recap:

 

Step 1. Work on yourself, find your balance and get comfortable with the “new you.”  You are the most important thing, trying to find friends before you have a strong base will do more harm than good.

 

Step 2. Focus on therapy, finding the right therapy and best routine for you, and rediscovering yourself.  When you have gotten into the swing of your new schedule look around.  Reach out, talk to people with similar interests.  This can be a great first step in finding new friends.

 

Step 3.  Join (a) brain injury support group(s).  After therapy has become routine and you feel you can take on more, join brain injury support group(s).  Being around people who are going through or have overcome similar problems can provide hope, support, and help overcome fears.  Support groups are another wonderful place to meet new people and make friends.

 

Remember:  Do not push yourself to find the “right” friends.  Relax, open yourself to suggestions, possibilities, and do not limit yourself.

 

 

Now it’s time to move on to the next hurdle.  The how.  How to prep yourself to navigate around some common pitfalls survivors have, how to successfully connect with people, and most importantly how to make and keep friends…

Onwards and Upwards (Connections V)

 

A concerned parent of a TBI survivor wrote me that seven years after the accident he was concerned that his son was “stuck” at his injury age (19).  Seven years later, at age 26, though outgoing and involved in the community his son has trouble making new friends.

 

The phenomena of getting “stuck” and acting younger than their age is not uncommon.  Because brain injury does wipe out social skills it takes time to relearn a lifetime’s worth of social skills.  Hastily relearning social etiquette immediately following the accident causes that point in the survivor’s life to be the baseline for what is appropriate.

 

Moving beyond that isn't something you can rush.  The survivor has to be past the point of struggling to keep the deficits under control.  Also, even though this may seem obvious to you it is important to talk to the survivor about your thoughts on the matter.  It can be a lot easier to see these things from the outside and he may not even realize that this could be a problem. However, is equally important for the survivor to make a concerted effort himself.  It is harder to read signs and pick up on nonverbal cues, but if you want to move forward it’s important to try. 

 

I do not know the whole story, and especially in today’s day and age many 26-year-olds tend to act much younger, but there are a few things that aren’t as readily accepted.  Different situations have different rules of propriety.  For instance, it can be okay to curse or make off color jokes around your friends, but doing it around your boss or professor would be unheard of.

 

These changes in environment aren’t always so obvious and when they are subtle picking up on them can be difficult for survivors.  Unfortunately they can be extremely important.  It is important to always be yourself, but in this case, my recommendation is to look at how others are acting in different situations and follow their lead.  At least until you have a better idea. 

 

As far as making friends goes, I would say it is best to hang out with the people you feel most comfortable with.  Age is a number.  I have 21-year-old friends that act more mature than some 50-year-olds I know.  The most important thing I can tell you is not to stress about meeting people or making the “right” friends.  You’ll find your stride, but trying to force it won’t help anything.  Just play it by ear, everybody grows at their own rate.  Accept yourself for who you are, reach out to others, and good things will happen...

Light at the End of the Tunnel (Connections VI)

No one can understand what I am going through.  How could they?  After such a huge change, and especially when family, friends, and therapists clearly don’t understand this is exactly how it can feel.

 

I recommend initiating conversations after therapy and reaching out to classmates in therapy.  Unfortunately, when it feels like others can’t understand reaching out can seem like an almost lonelier and more isolating prospect.  More people to misunderstand and remind you of the separation, and change – this prospect can be terrifying.  This is another reason it is important to ease back into things. 

 

It is vital to remember that one is not alone in feeling this way.  There are millions of brain injury survivors and though every injury is different and each survivor has a unique experience, there are many similarities in all brain injuries. When you feel your therapy routine is under control try joining a brain injury support group. 

 

Being told you are not alone is one thing, but meeting others who have gone through what you are experiencing is another thing entirely.  There are groups for brain injury survivors all across the world.  These communities are wonderful places to meet people, work on social skills and find guidance.  Survivors can share experiences; offer suggestions for how to live with these deficits, and most importantly serve as an example that there really is life after brain injury.

 

Not only are they a place to find much-needed support and companionship, but going can also help you to realize that you are not alone in your struggle.   Meeting others who have gone through similar things can ease the burden of solitude and offers hope for a light at the end of the tunnel….

Another piece of the puzzle (Connections III)

Therapy.  The word has so many negative connotations.  When I got out of the hospital my parents had to drag me there.  I hated being in another clinical building.  I loathed cognitive therapy; I detested occupational therapy, and despised speech therapy.  They kept telling me I was injured when I clearly wasn’t, or so my anosognosia*-addled brain told me. 

 

But didn’t I just recommend focusing on therapy and working towards improvement? 

 

Unquestionably.  But though traditional therapy is important, alone it is not always as effective for brain injury survivors.  I believe that using whatever means available to improve.  Therapy does not have to mean traditional therapy or be held in a clinic to work well.  In fact, alternative therapies have been proven to have some extraordinary results. 

 

Every person is unique and so different survivors respond better to different types of therapy.  In deciding what type of therapy to try, it is better to look at the person than the injury.  Likes, dislikes, strengths, weaknesses.  Enroll in types of therapy that best suit the patient.  The more he enjoys what he is doing the more effective it will be.   Music, riding, dance, art, horticulture, and recreation are among seemingly endless list of recognized therapies.

 

But not every therapy is equally effective for all patients.  It is extremely important to find the right fit.  Alternative therapies can help every aspect of life; many types of alternative therapy such as animal assisted therapy, hippotherapy (riding therapy), and recreational therapy encourage social interaction, cultivate empathy, and help rebuild social skills.  Rebuilding these skills and relearning how to connect is the next step on the path.

 

Another wonderful benefit of therapy is that your classes can be a social goldmine.  Not only are the people in these sessions fellow survivors, but they also share similar interests.  The more you have in common with someone the easier it is to talk, start conversations, and bond with them.  Start a conversation and see what happens.  Chances are you will find that you have more in common you’re your classmates than you might have thought.

 

After a session, say hi to one of your fellow patients and see where your conversation takes you.  Having a friend in therapy can motivate and inspire both of you to do your best. 

 

 

*Anosognosia is a fascinating condition in which the brain cannot recognize injury or change.  It occurs in over half of right hemisphere stroke victims and many brain injury survivors and can cause patients to be resistant to therapy.

A Strong Foundation (Connections II)

 

Immediately following a brain injury it can take all of your effort just to keep your head above water – the smallest things may seem like too much to take.  As the overwhelming waters of confusion begin to recede however, it is common for survivors to feel stranded, friends nowhere to be found.  This is not their fault, for days, weeks, or months they have been warned against overstimulating the survivor.  People cannot be expected to wait indefinitely or to instinctively know the right time to rejoin the survivor’s life.

 

This may lead to lonely times, but it’s important to remember not to rush into a full-blown social life.  After brain injury it’s extremely easy for survivors to become overstimulated and fatigued.  As time passes it happens less frequently but take care, don’t let this newfound energy lull you into thinking you are better.  Take care of yourself – brain injury episodes are never far away.  Not only can these destroy friendships, both old and new, but it is also terrible for your health and progress.    Not to mention that overstimulation may cause an instinctual withdraw from the world to recuperate.

 

The best way to avoid hyper-extending or overstimulation is to make a schedule and get into a routine.  Have definite activities to get you out of the house but also make sure to schedule breaks and times for rest.  This will this help balance life, increase motivation, productivity, and happiness in general. This series is about making friends and connections, but the first step to building lasting relationships is taking care of yourself and getting your life in order. 

 

Take it easy, focus on therapy, discovering the new you, improvement, and building a strong foundation.   Find your feet and get comfortable in your routine always making sure not to take

 on too much.  When you have gotten in the swing of things and feel confident, that is the time to open yourself to opportunities for friendship.  And therapy is a good place to start….

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.

 

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

 

 

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…

 

 

 

 

 

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….

 

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.