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