My Weblog

Lack of Blogs

Sorry for the lack of blogs last week.  Been busy with this new biz.  I hope to resume next week (Day after labor day)

Where and what is it? Success I mean

We all measure success differently.  For me, success is: if I died right now would I die fulfilled?

I think about that question in relation to all the stages I have been through following my TBI.  As I have progressed I have become more focused on what is important to me, as opposed to what is important to everyone else, or what I had been taught was important.  I found that one of the amazing things for me to do is to help other people.  Success and fulfillment for me is having somebody tell me I made a difference, or sending me an email saying they saw something in what I wrote.

My head injury is a gift that I want to be able to use to help others through tough situations if I can.  That is success to me, and it is what fulfills me.

That is what I am attemting to do through this blog, let people know that there have been others who might have had similar experiences and that there is hope.  I want to be a hope dispenser.  Similar, I guess to a pez dispenser, but the candy is sweeter.

So, how do you measure success?  Is it the ability to be able to read again?  Have a conversation again?  Feel "normal"?  These are all steps on the road to feeling fulfilled, and any one of them can do it on it's own.  The point here is that you are judging yourself based on who you are now, not who you were before your Traumatic Brain Injury.  Life has changed, and although it may be possible for some to pick up where their life left off, the vast majority will not only find things dramatically different, they will also find what makes them feel succesful to be different.

Life, anyone's life, is a series of events, all of which have some affect on us.  You owe it to yourself, not to beat yourself up because you aren't the person you were before the TBI, but to become the best human being you can be, and use your TBI to create something.

To act as though the TBI never happened, or to beat yourself up because you can't do what you used to do is doing yoursef a disservice.  Terrible things sometimes happen, and they present us with a choice.  Either we can think of them as terrible and live our lives negatively, or we can become something new.  We can evolve.  Although having a head injury would certainly not be our choice, how we react to it is.

More Memory Stuff--Associative

Let's face it, almost all of us who have had a Traumatic Brain Injury have memory problems of one kind or another.  However, we don't have to accept them.  The part of our memory that doesn't work well is our rote memory.  To me that means the part that doesn't work right is the stuff that allows us to pull memories from the air.  So, if we associate our memories with something perhaps we can be more successful at recall.

Somebody will ask you what yo0u had for lunch, and you say, "Gee, I don't remember."  Youa re not able to pull that stand alone memory out o0f the air.  What if you tried this: thinking back to when you woke up, what did next, and so on, all the way to lunch.  Maybe if you tried this, remembering what was for lunch would be more natural.

The way I look at it, it's all about the flow, all about being natural and not straining for information.  Your life has a rhythm and flow to it.  Understanding this rhythm and flow can only help you understand, interpret and recall the events of your life.

I have a fairly tight extensive schedule that I follow with appointments and commitments I need to keep.  I think of my brain as a computer, which constantly "polls" itself for new and updated information.  I am always going over my schedule in my head, developing a rhythm which I have learned to follow.  And I always associate things I am trying to remember withother things.  Example: remember that baseball game we went to the other night?  No I've forgotten about it, but when I think of the people I went to the game with I remember the game.  The memories are all there, we just need to find ways to draw them out.

Associative memory takes more work, and of course is more tiring.  This remembering stuff is work and takes some getting used to, but it is possible.  You just have to learn new strategies to succeed.

Signposts or Markers

What are some strategies that can help with memory problems suffered as a result of a Traumatic Brain Injury?

To me, the idea has always been to create some sort of signpost, or a marker which can be physical or mental, to help associate one thing with another.  For example, this meant, and still often means, leaving items out so that they are in view and I don't forget about them.  Because of this simple system, my office at home tends to become cluttered and after a week I need to clean it up.  I give things a "Statute of Limitations", or a time period I am willing to leave it out before I declare it needless and throw it away.

It has struck me as to whether the problems with organization, which I have, and which is common among people who have suffered a TBI and have executive function problems, is really  a means to cope with trying not to forget.  That is, we leave things out, and look disorganized, not because we are incapable of organization, but because we know we'll forget, and this is a way for us to remember what we planned when we see the items we leave out.  In this way it is a visible filing system.

This is a way we do something physically to help us remember.

When I have to drive  somewhere I've been before, I may have no idea where I am going when I start out.  What I do know is that the knowledge is within me, and I trust that as I drive I will see familiar sites and find my way.  Trusting yourself is important.  Having confidence in yourself that you will know the way is also important.  If you doubt yourself you are doomed to failure.  You will question every move you make, and then try to correct actions that were correct in the first place.

Signposts and markers are things  we must actively use in order to compensate for memory issues.  Our memory is not going to magically get better, and so we must come up with strategies to succeed.  It can be done, but many times it is exhausting, especially at first.  It  takes much more energy for a person who has suffered a TBI to get along in the world because they are always compensating.  That is part of the reason TBIers get so tired so quickly, but it also is something which improves over time.

Think of yourself as a long distance runner.  Every time you go out and run twenty miles it may be tiring, but you are growing.  When my wife was pregnant I used to tell her that the reason she was tired and slept so much during the day was so our baby could grow.  For every action there is an equal and opposite reaction, and it's the same with us as we recover.  Accepting our stages as we recover, and developing strategies to help us not only be successful, but feel better about ourselves, is essential.  Knowing what you have to do, having a strategy for competing, is necessary before you begin running the long race.

Thirty Years

Okay, I will admit it.  I suppose I would be remiss if I didn't mention that yesterday was the thirtieth anniversary of my car accident and Traumatic Brain Injury.  I wasn't going to say anything because I'm a firm believer in not acknowledging these kind of things.  However, there may be a lesson here.

After I left the hospital, having spent a month in the rehab., I saw my neurosurgeon twice more.  With the exception of seeing a doctor almost three years later about spots I was seeing and being put back on dilantin, it was as though I had never suffered a brain injury.  My doc had told me that after seven years I would be fine.

When seven years came I pronounced myself cured and moved on.  I didn't talk about my TBI, nor did I blame anything on my TBI.  I knew there were certain things I could no longer do (such as read certain books), but I just concentrated on what I could do. 

There was even a time, spanning about 10 years, when I didn't think of it or talk about it.  I distinctly remember trying to tell someone about it once, and because I had't talked about it in so long, I really didn't know what to say.  The words sounded very strange coming from my mouth.  As my kids got older and life around my house became more emotionally trying, I could see that I couldn't run from it.  My ability to stay cool, discipline my kids and be reasonable was not that great.  This is when I started to check myself out again and became involved in a search for myself.

This thirtieth anniversary came and went with no fan fare.  My wife called me today to apologize for forgetting about it, but there was nothing to apologize for because as far as I was concerned, there was nothing to remember.  Celebrating anything other than your victories and your growth is simply an exercise in being stuck in the muck of the past.

It is an acknowledgement that this thing that changed your life continues to control you.  We all want to move forward.  It is harder for some than for others, but everyone needs to know that moving forward consists of a series of small steps and actions.  You owe it to yourselves to, not forget the past, but put it in its proper perspective.  Until you do that there is no moving forward, only treading water.

Stop that Tension

There is one thing I've learned over the years...tension definitely makes things harder, and contributes to making any deficiencies seem worse.

Take memory for example.  While the impact of a Traumatic Brain Injury can vary widely from person to person, memory issues of one kind or another seem to be impact everyone across the board.  A common response to a lapse in memory is to try really hard to remember.  Usually all this does is cause the gears in the head to grind to a complete halt, and everything becomes blank.

Much is the same with balance.  Balance is not learned, it is instinctual.  After a TBI, balance often needs to be regained, but it is treated as a learned bahavior.  There may have been some physical damage to your balance apparatus, which can complicate things.  However, you don't relearn balance...you regain it.  How do you regain something that is instinctual?  Practice, and developing strategies.

What kind of strategies?  Strategies to follow that allow your natural instincts to take over, and let your body compensate for things that have changed.  Think of much of your body (including your brain) as a piece of rubber, malleable, compensating for weaknesses and exploiting strengths.  Your brain is (as my neurosurgeon used to tell me 30 years ago) a muscle, and it needs to be exercised.  In fact the brain is incredible, in the way it evolves quickly to compensate when things might go wrong.

Developing strategies helps with relieving tension.  In my mind, strategies should remain as simple as possible and focus on making life simpler.  Many of my strategies have to do with ways to keep my life simple.  The simpler your life is, the easier it becomes to manage and to live it.

What you really are is a quarterback, managing this huge game called "life", and you need to figure out how to keep things under control.  The simpler you make it, the easier it is to execute. 

Next time you forget something, or misplace something, jump into the role of quaterback.  Instead of tensing up and trying to search your memory and getting upset, stay cool and know that the information is safely in your head.  All you have to do is retrieve it.  Relax your muscles and don't think of what you are trying to remember, think of what you were doing when you heard it or thought it.  You'll find that taking the circuitous route to the information is far easier than trying to slam-dunk it.

The Struggle

Those of us who have suffered a Traumatic Brain Injury have been brought together by a common struggle.  The details of one person's struggle may be different from another's, but, as I said earlier this week, each of us is dealing with a loss of belief and trust, and are trying to find a way to fit in the world.  This is really the common bond that brings us all together.

Any of you see the movie X-Men?  I was struck by some similarities of our situation to that movie.  The main similarity is that we all are off by ourselves and not understood by society, sort of the way the mutants are ostracized.  I would like to take this a bit further though.

In the movie, each mutants is trying to develop his or herr powers, with each person having different ones.  Society doesn 't understand them or what they are doing,  and judges them based on the fact they are different, without looking into what they can contribute.  Society is short sighted and narrow minded, as usual.

What is interesting in our situation, is that not only is society being short sighted and narrow mnded when it comes to judging us, but we are short sighted and narrow minded when it comes to judging ourselves.  We are often our own harshest critics.  How can we expect society to go easier on us, when we don't even do it to ourselves?  Although it's hard, we need to find a way to move forward rather than lament the stuff we can't do anymore.  We need to adapt and keep on living.

In sort of the same way as the mutants, each of us could develop new and exciting "powers" that we have acquired through our TBI.  Having a TBI has changed things dramtically for us, but it hasn't stopped our ability to learn and grow.  The world and how we deal with it has changed, and it is up to us to make sure that change is positive.  Things will not return to the way the once were.  Accept it, put your head down and trudge forward.  The Earth is not flat.  You will not fall off.  Nor will you walk in a circle and have the end be the same spot as the beginning.  A new and exciting journey has begun, and regardless of what physical or mental or emotional deficits you have, you can take that journey and make it as grand as exciting and mysterious as a trip on the Orient Express.

Trust & Belief

So, as I wrote yesterday, the two things we need to head off the doubt are trust and belief.  Ask anyone with a Traumatic Brain Injury, and this is much  stated than accomplished. 

Trust and belief are not things that just pop their heads up one day and stay with us.  Finding a way to trust and believe cuts to the core of what having a head injury is.  First of all, what do we trust and believe in?   Secondly, how do we overcome the doubt? 

This is made very difficult, In my case for example, by the fact that at first I didn't feel I had changed.  This was folllowed by the realization that everything had changed and I couldn't be sure of anything I was doing.  The total and utter collapse of the system of believing in myself made having any kind of trust extremely difficult.

I knew I had to do something (in my case easier because I graduated college two years post).  I felt as though I had to completely change my surroundings...remove myself from what I knew, live with people who didn't know me before my TBI, and basically start over as a human being.  I had to learn how to react and what to react to.  That was the only way I could start trusting myself again, and the only way I could learn top believe in myself again.

This is when I moved to Colorado and worked as a disk jockey.  Over the next two years I created/regained my persona and only then did I feel comfortable moving  back to my roots and trying out what I had learned.  Everyone needs to deal with the loss of trust and belief in themselves their own way, but most often this is uncomfortable and trying.  It HAS to be uncomfortable.  Growth is never easy, and the more you grow, the more painful it might be.

However difficult, seize this opportunity to BECOME.  Stretch yourself to find out who you really are and live your life to the fullest.  The finest expression of the gift of your new life is to embrace the person you have become...warts and all.

The Viscious Cycle

It has been said that doubt is the enemy of the warrior.  Well, if you've had a Traumatic Brain Injury, think of yourself as a warrior.  You are a warrior in a battle for yourself...your piece of mind and your state of being.

Doubt plays an even larger role when you've had a TBI.    Here is the reason: there are so many subtle mental things that are affected, and add to that the propensity (I believe) to not believe your senses (what you are hearing and seeing), that if you doubt yourself you can find yourself in constant confusion.

People who have had a TBI get confused.  That is a very big word.  Let's try to look at what is really happening.

To me what we are really dealing with is an overload of information.  When information is funneled into you ( through words, sights, sounds, ideas), and you are unable separate and organize these in a way which lets you understand them, you become confused.  The confusion shows up as an inability to make a decision or have an opinion or a clear direction because your senses and brain are being bombarded  by all this stuff.

One way to help this confusion is to limit your exposure to simulation, and to believe in yourself.

You can limit your exposure to stimulation by controlling your environment.  Sometimes I think we do this unconsciously, like when we get distracted or lack concentration.  Do you think distraction may sometimes be a reaction to having too much information?  My point is here that we often compensate unconsciously, without even realizing what we are doing.  The trick is to try to become aware of how we handle certain situations, so that we can use some of these tools when we want to. 

One thing I learned after 9/11 is how tightly I had controlled my life so that I could protect myself.  I realized all that was out the window now...here was something I couldn't control and I better get used to it. 

There is a fine line between belief and doubt.  In order to recover you need to believe in yourself, and although they are opposites, the trip between belief and doubt is very short.  Also, you can't have a little belief, you either have all or nothing, whereas you can start out with a little doubt and pretty soon that insidious stuff is taking over. 

One more complication: doctors can't prescribe belief.  They do the next best thing in their power, which is prescribe drugs.  The only trouble, as I see it, is that in some cases drugs may bring disbelief, or doubt in yourself, because you may think that you can't exist without them.  You've got a viscious cycle here.  I don't pretend to be a doctor, and this is not anti-doctor advice.  It's up to each patient and doctor to seek the right path for their situation.  There are a lot of terrific drugs out there that have helped many patients, including me.

Be smart and be wise.  Try to get a handle on the situations that confuse you, and trust yourself enough to feel good about your choices.  Make sure they become the right choices.  This is in your power.  If you believe.

Strategies for Success: Being your own person

Remember yesterday's blog?--  "Whatever you can do or dream, you can begin it.  Boldness has genius, power and magic behind it.  Begin it now.”

You have had a Traumatic Brain Injury.  You have acknowledged that you are a new person and set out to learn more about that person so that you can really become.  You have seen that choices must be made that will allow you to become. Then you must take action and be bold in order to make your choices mean something.

It is all about being your own person.  What others may think is bold is really no big deal when done in the context of who you are.  It is just you.  It is just you being powerful.  Claiming what is yours.  No matter how confused you might be right now, there is that part of you that is ready to grab for the brass ring. You must do it one step at a time.

The progress is slow.  Possibly agonizingly slow, but you can get there. 1) Discover who you are now.  Cherish that. 2) Think about how you would like others to see you and what you want your life to mean.  3) Make choices to create that life you invisage for yourself.  4) Be bold and put the plan in action.

The steps above will allow you to be your own person.   No matter how people see you as you stand in front of them...a cane, walker, wheelchair, etc....you are defined by your commitments and your actions.  Grasp that idea to be everything you always dreamed, and to feel no limitations.

It's your life.  Live it fully.