My Weblog

Disabled...the dreaded word.

Last spring I found myself in a place I thought I had left far behind...specifically, I felt as though I had just been released from the hospital, sent off by the doctors with a handshake and a pat on the back, and not an idea in my head.

Our family business, in it's sixtieth year...the one I had been able to learn gradually, with no pressure, and had done well at...had closed.  Now, how would I find a job?  I had a family to feed and a mortgage.  My life had become very normal over the last thrity years, and these things were shocks to my system.  I fell into two jobs, but found it hard to learn them and follow directions the way I needed to...I was let go from both.  On my fiftieth birthday my wife left, asked for a divorce by phone, but then came back a couple of hours later.  With all this going on, the only thing I could think of doing was going to see my neurlogist.  When I saw her everything that seemed to be happening at once, and which I was unable to explain, came together.  Now I understood.

I had spent nearly thirty years behaving as if everything was ok.  Sure, there were things that were a bit of a problem...like reading certain books or following conversations, but essentially, I lived as though there was nothing I couldn't do.  I pushed forward on everything, bent over, as if continually walking into a headwind.  This was the only was I knew how to survive.  But now things had changed.  I was almost 50 years old.  My accident was a long time ago...but I saw that it never goes away.

The big lesson for me was that I was going to have to accept my disability in order to move forward.  Accepting it was hard.  I hated being referred to as "disabled".  I had spent 30 years trying not to be disabled.This was a label I didn't like at all, but I saw that I was going to have to start over from the beginning just as though I had left the hospital yesterday.  I couldn't let my pride get in the way.

Even as I tried to accept this new status, there were others who couldn't.  My wife didn't see me as disabled and she was unable to.  She just got mad because I wasn't working.  I saw I needed a plan.  I needed to move forward on certain fronts so that I just didn't whither away.

My brother told me about the Jewish Vocartional Services, a job placement organization.  Through them I hoped to look for work I could do.  I also decided to apply for disability.  Those were the first two seeds I planted.  I knew that once I planted the seeds they would grow, but I also knew I wouldn't know exactly what was going to sprout out  of the ground.

My role in the family business had become that of almost what could be called a sales facilitator...making connections and putting people in the right places for the company to succeed.  I had a team of people working with me, and to be successful in this new pursuit, I would need another team...a lawyer for my disability case, people to advise me on work...etc.  However, the important thing was to put stakes down and start.

Until I did that, I was dead in the water.  (to be continued)

Ch-ch-ch-ch-changes

The changes have been fast and furious this past year.  My last blog  was posted over a year ago, and to be honest, I am embarrassed that it has been so long.   I am embarrassed for a number of reasons, but most importantly, what this shows is a lack of follow-through and committment on my part.  Over the last year I have learned much about my self, about finding my place in the world and about what that place might look like.  Hopefully, I can share this knowledge with others who have suffered a head injury.  That way we can all learn and grow together.

For several months I wrote this blog every day.  I will try to keep to a schedule of once a week.

I should start off by telling you some of the things that have changed for me.

1) I am getting divorced.

2) Even though I was the one who left, I forced myself to acknowledge my role in the divorce, not only in terms of what I did, but also what I didn't do and didn't see, including the impact my head injury  had on my behavior.

3) Our manufacturing business went chapter 7, and in the new reality of trying to work for someone who wasn't family, I found new deficits and these prevented me from being successfull.  In fact, after neurological testing I found I was disabled.

4) A month after being let go from my second job I left my wife of 23 years. To actually leave, thereby quitting on my marriage was an absolutely gut wrenching thing for me to do.

5) On the heels of leaving I learned, officially, that I was disabled.

6) I then became intolerably clingy for several months as I began, it seemed for the hundreth time, to try and figure out what I was going to do with my life and how I was going to survive.

7) Lastly a cousin of mine was seriously injured in an accident and spent 4 weeks in a coma.  He is a patient in the hospital I volunteer in and I visit him quite often.

I have learned a tremendous amount about myself from these experiences, and I will be sharing my thoughts here.  I would like very much to have you visit when you can.

Learning & Re-learning

The past 8 or so months have been an incredible learning and growing experience for me.  That's what failure does...as long as your heart and your mind stay open, what other people call failure can be both instructive and meaningful.   This doesn't make failure any easier to bear.  It doesn't remove the stigma you are forced to live with, nor the questioning looks of people who know you have failed, who don't understand and think you're either a dumbass or imcompetent.  Everyone is familiar with that look...the grimace. The raised eyebrows.  The "how could you do anything so stupid" look.  Failure can be excutiatingly hurtful and debilitating.

Failure is a way of life for those who have suffered a Traumatic Brain Injury.  This doesn't make it any easier to accept or to deal with.

Truth is, when one is failing all the time, one must be able to persevere through the failure.  To persevere, one must have, in turn, the ability to see into a time in the future when failure is passe, when it is unacceptable.  For me, the first five or ten years after my accident, failure was something I almost looked forward to because I knew I was growing.    It was, for me, the only way I could learn.  It's still that way sometimes.  I know that failure is something I constantly must face, and I have to accept it, even when others can't understand the role failure plays in my life...that I amost "need"  it.  It's as though you're driving in a car at 100 miles an hour, going around a turn on a rain slicked road.  The moment comes when you know you are losing control.  The crash is inevitable...and you smile waiting for it to happen.  This does not, however, mean that I expect to fail.  Failure always still comes as a surprise.  I never set out expecting to fail, and it always hurts. 

Over the last six months I have failed at two jobs.  Before that, my sixty three year old family business, where I was VP of Sales, closed, and I was on the street.  The first time I failed was not becaue I couldn't do the job...it was because I wasn't given the proper resources to learn it.  Those resources included understanding and time.  The second time I was given the proper resources, but ended up doing a dumb thing and breaking a rule when I didn't apply proper judgement, and failed to transfer that rule from one situation  to another.  My head injury has made me incredibly literal, and if a situation isn 't exactly the same, sometimes I cannot relate the two. 

Sure I have failed less and less over the last 30 years, and I know that it is an important part of my growth still, but it hurts more and more, even though I know the outcome may be positive in the end.

Some situations I walk into, I know full well they will be painful growing experiences, bringing up all kinds of awful reminders of what happened or the way I used to be.  I will not only remember these feelings, I will relive them...flashing back, almost, to the past...but I know it has to happen in order for me to become a human being.  In fact, these sitiuations serve to free me.

The second failure plunged me into a deep funk, and I started questioning myself.  Is it worth it?  I asked.  I was getting so tired of going through the same painful experiences.  I just didn't want to do it anymore.  I was almost ready to give up.  But I didn't  I have always been a fighter and I always will be

There is much stress right now around my work situation, applying for disability, and all the stuff that comes with having a family...and I find myself messing up.  I am not always making good choices.  But I am not giving up.  I am searching for the things that keep me on track...for those things that add structure to my life.

Embracing failure has become more difficult as the stakes get higher, but I know it is exactly where I must be.  Every day I see people who would not understand this.  People who have never known either failure or trauma.  I see how they live their lives.  I feel sorry for them.  My life is rich.  I am not coasting through life...I am truly experiencing it...and I could not ask for anything more. All the pain makes the joy more joyous.  The feeling of being alive more incredible.

Someone who takes a lot of vacations or has a lot of toys isn't necessarily living life.  They are living their life on one plane.  If they were a flying machine they would be a glider.  I am a thrill ride at an amusement park.  I scream sometimes as I go down a steep drop, but I also cry at the beauty I see, and feel the magic around me.

On my gravestone this is what it will , "He lived."say

Finding a Champion

When working in industrial sales, an very important thing was finding a person in the organization you were selling to be a Champion for you.This idea can be carried over to every aspect of life, and is especially relevant to those of us who have suffered a head injury.

The loneliness and isolation which occurs after one has a Traumatic Brain Injury has been well documented.  There are a few other things which can rip your life apart as much, but really there is nothing else which creates such a lasting isolation and hopelessness.

One of the first steps is to have, as you create your new life, little victories.  Many times these victories seem dumb and arbitrary, but one has to learn how to put themselves in a position to be successful.  These little victories, whether they he learning to walk, ride a bike or read a book, should be celebrated as the milestones they are.

What we are trying to do here, as we begin to build our lives again,  is to create a culture of success.  Little successes build on each other, so that the end result is not only the accomplishment itself, but also the feeling of accomplishment we get from being successful.

We learn what it takes to be successful, and we learn how to build the proper mental fiber to keep this success going.  Remember, a positive attitude is worth 1000 physical or occupational therapists.

Working hard and being committed leads to little successes, which then builds and becomes a culture of success.  A culture of success cannot be stopped.  Why? Because the success is part of you and cannot be taken away.  Hard work and committment also lead the way to helping find a champion.

Others see how hard ou are working, and that not only shows them what kind of person you are, but it gives them an idea of what you have to overcome.

We all need champions, and the truth is, that although they are hard to find they are there.

A Life Worth Living

Why are we put here?  Why are we even alive in the first place?

I guess each of us has to decide the answer for ourselves.  Many of us who have suffered a Traumatic Brain Injury ask ourselves this question all the time.  Our lives have been turned upside down, and, based on how much work it takes to "live", many of us wonder why we are here in the first place.

Fundamental defintions change and the meaning of life itself needs to be learned.

We all want to live a life worth living...but what does that mean?  Each of us must decide what that is, but I can tell you one thing, the answer is going to change from what it used to be.

In order to even conceive of "a life worth living", huge shifts need to occur.  Some of the following definitions need to be examined:

Fun

Work

Life

Pleasure

Goals

Abilities

Very simply, our universes must be totally realigned.  Everything we bring with us from our old world is now "wrong", and to exist and flourish in our new worlds  we must come up woith a new list of "rights".  This is not impossible.  It IS painful.  Throwing away everything we once knew is hard.  Embracing what we have become is harder. 

That is really what it is all about.  Life is not about what we are as much as it is what we have become.  One thing a TBI gives you is an appreciation of the power of the brain.  Not many people have such an appreciation, and I feel lucky to focus in on that power.

With a TBI your journey doesn't end...it begins again...but you have to open to receiving the gifts now at your disposal.

Peace. J

Improvement is Continual

First I want to acknowledge another person who has had a TBI, who's email had a great way of looking at things, and got me thinking about some writing and speaking I have done in the past.  Our thinking about "opportunity" was eerily similar, and I wrote  about it in one of last weeks blogs.  Thank you Kimberly.

Well, I was out with five of my friends the other eveing.  We were in a small field next to a field where the Pop Warner kids had already begun their fall football practice.  The six of us were having a giant game of "pickle".  Now usually "pickle"is played with 3.  One person stands about thirty of so feet from another, on bases, and a "baserunner" goes from one base to the other and tgried not to get tagged out.  We had six people, so we formed a triangle and had three runners.

At one point i was holding the ball and all the runners were standing on bases so they couldn't be put out.  I thought of a time when there was a dog who lived near me who would run after a ball if you acted like you were throwing it.  I wondered if it worked with humans.  I made believe I was throwinbg the ball, the human next to me started to run, and I tagged him out.

This may not sweem like a big deal to most people, but this type of thinking was exactly the type of thinking I never used to do.  I call it "putting two and two together", or taking two seemingly unrelated things, and finding a link.  That's what my head injury did to me initially.  Robbed me of any common sense, of any ability to tie two things like that together.

Learning how to think expansively was one of the toughest things for me, and you know what?  It is still something that doesn't come easily.  "Tunnel vision" thinking takes over way to often, and I have to fight to be open minded, so to speak.  The point here is, that thirty years after my TBI, I still have to work at it, and I'm still growing.  The difference is between now and then is that now I KNOW what is possible.  The trick is to put that knowledge into action.  That remains my focus, and it is a battle, but it is a battle I am winning, and that I'm going to be successful at.

Free Your Mind

When I think about what happened as a result of my coma, about my TBI, Traumatic Brain Injury...or whatever you want to call it, I think of two things in particular. One of these, I believe, is the name of an album done by the comedy group Monty Python, and the other is a line from the Matrix.

It was Monty Python who said, "Everything you know is wrong."  I'm not referring to what a person with a brain injury would know.  I'm talking about everyone else.  Despite what a person with a brain injury may think, there is an awful lot about what they know that is right and good.  They just have to trust themselves.  The trust is missing...the trusting of your own thoughts, of your senses, and your perceptions.  Trusting them will begin to lead you in the right direction. 

That leads us to what everyone else thinks.  For the most part...that is what is wrong...what everyone else thinks.  People are so stuck in their way of thinking and behaving that they can't step aside and see what is really going on.  Someone who has suffered a traumatic brain injury has a new window into life.  A new way to look at things that have always been.  Now they may not look like they should be the way they always have been, and they make themselves wrong for thinking this.  Truth is...they could be right.

In the Matrix, that bald dude said to Neo, "Free your mind."  This is what allowed him to jump from rooftop to rooftop.  Jumping like that was something that didn't look possible, and the fear, or the thought of not being able to do it was exactly what made it impossible.  It was Neo's perception of jumping that made it impossible.  Much of head injury is about perception, and not trusting.  Finding the inner strength to trust yourself is what will disprove conventional wisdom.  Conventional wisdom is good for those stuffed into a convention center, following the party line.  For those of us on the edge, living what may be a new and unanticipated  life, there is no conventional wisdom.  There is only the truth as we know it.

So remember....

Everything you know is wrong.

Free your mind.

Another Wild Ride

This has been one crazy roller coaster.  It's been a while since I've written, and I want to thank people for the emails asking if I was ok.  I was and am unbelievable...I just had a lot of stuff on my plate that I needed to take care of.

The last few months were a huge learning experience for me.  I was up against it in more ways than one...and I'm not completely out of the woods yet, however, it was a great opportunity to put into practice many of the things I've been talking about. 

I was having difficulty adapting to and learning a new sales job I have, and became aware of many weaknesses I had not been aware of since I had been in my last job for twenty five years.  I saw there were  areas I had learned to work around...shortcomings that may have been a result of my traumatic brain injury.  There were areas where deficits may have been "covered up" since I was working in a family business.  There were things that I didn't think would be a problem, but turned out to be difficult.

I basically had to start from the beginning, not get discouraged, and not lose my composure.  My success would only come by taking one small step after another small step, and I was hit smack in the face with the idea that, thirty years after my TBI, my growth and recovery were never ending.

Most of all, behind any frustration or dissapointment, I was filled with the exhilaration of being vital and alive.  I made up my mind that I was going to succeed.  That said, I wouldn't have been able to come this far without the continued support of my two managers, for which I am very thankful.  We are not islands, out on our own, but we need to give and get support along the way and acknowledge those who give it to us.

Too many people who have suffered TBI are left alone to succeed or fail.  Enrolling others to understand or help is key to, not only success, but being a human being.  I may ultimately  not be successful at this, although I really don't consider that an option.  My success is not only for me, but it is also a way of thanking those who believed in and supported me.

This is not about deficits or head injuries...it is about fighting the battle of life.  It is about being present to accept yourself as you are and to move on.  Let's try to forget what we once were and focus on what we have and can become. 

A Little Fun

We never talked about fun.  We're always so bleeping serious!!!!

Thanks to the folks in TBIchat.org who helped me develop the:

SHORT, JEWISH WHITE MAN RAP

I walked to the fridge

And opened it up.

Chicka chicka boom boom

Found what I was

searching for.

It was the wrap,

the chicken wrap.

Chicka chicka boom boom

Saw the dellophane

and the tin foil too.

the leftovers were bare,

knew exactly what to do.

I did the wrap,

chicka chicka boom boom,

the chicken wrap.

love singing that tune.

The chicken wrap,

chicka  bom chicka boom.

Save those wings

for late, she said

so i went ahead,

knew we had to be fed

at some time lata.

I did the wrap,

boom boom

the chicken wrap

boom boom

i did the wrap

and i did it

none too soon.

Tragedies and being "normal"

Since Katrina, all the destruction and the submersion of New Orleans, working on this blog has seemed pointless to me, at least in the manner I was writing it.    Then I decided that the utter irrelevance of writing (or reading) this blog was exactly why I had to do it.

When you have a head injury, the relevance of everything around you becomes resoundingly deep and meaningful.  When people look at you cross-eyed you don't think that it's because they actually are cross-eyed, but they look at you that way because you are head injured.   The absolute weight of your thoughts and fears drag you down.

What we need is something to make us stop thinking about ourselves and our plight...a way to make ourselves useful so that we don't feel head injured.  Involve us in an activity wth purpose which will give worth to our lives and make us feel as though we are contributing.

When I watched what was happening in New Orlean and Mississippi I wanted to go down there.  I didn't want to give money because that would not be an expression of how I felt.  I wanted to share life with these people.  I wanted them to know how important they were, and that I was ready to sacrifice for them.  Then I came back to reality.  A new job...I haven't really been working since my company closed down.  My responsibilities to my family stopped me, but how I would love to go there for a month or two.

One thing we have all learned is: what is really meaningful.  Each of us knows the value of life, and not only that, but the value of a "normal life"  ("Normal" being that place we cannot return to.)  Who gives us a "normal" life, or ordains us as "normal?  We do.  It's how we think of ourselves relevant to everyone else.   However, the scope of this tragedy goes beyond the word "normal" and makes it irrelevant.  In fact, having the United States suffer disasters (something once almost unheard of) is becoming "normal".    In fact, being normal in the United States is no longer synonemous with being invincible.  Being normal is an admission that bad things can happen...really bad things.

These people who have been so badly affected will hopefully live to  see a better day, and that is partially in their own hands.  In some cases they may be powerless to really affect their future, but they are powerful in taking what they have learned and applying it to their lives. 

Think of each of us as having special powers which we can use for the better good.  Tragedies  mold us, whether they be hurricanes or car accidents.  We just have to learn how to use them.