The ADBC's of Life

This blog came into being because I knew I needed to write my lessons down.  Some people say my life has thrown me some hard punches.  In comparison to many of their lives, I can see how they may think that.  But you have to remember one thing.  Most of us only remember this ONE life.  If you grew up in central Africa and lived in a hut, someone bringing you a basket of oranges from Florida may be a memory you cherish forever.  If you live in Florida and someone brings you a basket of oranges, although grateful and happy to eat them and share them, it wouldn't have the same impact.  

My point here is that everything is relative.  I have no clue what aging without a brain tumor would be like.  Since the age of 44, I have forgotten things (to an excessive degree), become confused, been impulsive, overwhelmed by stimuli, etc.  For some people, this is a gradual process as they age.  This is life for me and it is all I know.  To be honest, it doesn't seem bad to me, it just is.  The silver lining inside this cloud is that I have the greatest inner peace I have ever felt.  For this reason, I continue to write this blog as I try to understand, even for myself, why my inner contentment has become so much more than before.

Approximately five years ago, I was honored by a request to create a puzzle piece for a brain tumor awareness display.  Similar to the AIDS quilt, patients were given the opportunity to create a puzzle piece which described their journey thus far as a brain tumor patient/survivor.

This was the first time I actually sat down and gave serious thought to my brain tumor experience to such a degree.  To put something into a visual description caused me to have to think about my experience in a very different way.  I found the whole experience of creating this piece to be very therapeutic and also very enlightening to me about my own experience.

I wish I had clearer pictures of the puzzle piece but the only picture I have is shown here.  Being a Taurus, of course, mine is very colorful!  

Starting at the top left corner, you can see smooth, silky, lavender material, casually draped.  That represents my life before the brain tumor.  

The black line that crosses over the puzzle piece is the road of my life.  It was a bumpy texture and made it's way across the whole puzzle piece.

At the right edge of the silky section is a turquoise, sparkly, sharp lightening bolt. This represents the actual moment my life changed.  It is a line that delineates the silky lavender from the other side.  You may also notice that pieces of this lightening bolt follow me along the road of life.  The seizures and episodes of exasperation and frustration when I attempt to do something I could do before are represented by the continuation of that bolt.

Words are scattered through the lavender silk.  Words like career, job security, educational goals, college, marriage, children, etc.  An organized and correct line of letters scatter across the silk - A B C D E F G H I and then slam into the lightening bolt.  After the bolt, they are jumbled, disorganized and very difficult to understand.  Words like fear, confusion, "what is normal", doctors, prognosis, etc. are scattered over the non-homogenous, dull sandy color of the right side of the lightening bolt.  But also, surprisingly enough, are words like grateful, lucky, appreciative, calm.  In fact, a picture of the Buddha is on this side.

Through creating this puzzle piece I realized something profound, at least to me. One thing was for sure, forever my life would be divided into two parts.  The before and the after.  BC and AD.  Now and then.  Me and her.  I found it ironic that if you line up BC and AD, you have a sort of fumbled alphabet.  But without the crisis, I don't know if I could have appreciated the calm.  If my life were always calm, I wouldn't appreciate the basket of oranges.  I wouldn't feel tears behind my lids when I think about how lucky I am to know and spend time with my grandson.  To be able to see my teenage daughter grow into a beautiful woman. I wouldn't have the perspective to appreciate every step I take and every word I am able to utter.  

My heart hurts for the puzzle piece to the left.  This person has written "Let me out."  Although you can feel imprisoned in your own mind when so little around you makes sense initially, it does provide an opportunity to actually examine the inside world of yourself.  To accept different abilities and different limitations and set a new set of expectations for yourself.  I so hope the creator of this piece has found happiness in his/her new reality.

What my puzzle piece doesn't show, I did not yet know.  At the far right of the puzzle piece should be a silk worm in a cocoon. The simplest form of smooth silk.  Broken down to its true nature.  No more complexity, simplicity is the core of my thoughts.  Some say I have survived.  I like to think I have arrived.  

Your Neighbor's Coworker's Cousin's Boss's Wife's Uncle

The older I get, the more I seem to form opinions about my observations.  Maybe this is true for most people, I'm not sure.  But I felt like documenting this today.

Since moving about 30 miles north of where I used to live, I finally found a Buddhist 'Sangha' or what you could call a like-minded community of spiritual seekers who are interested in Buddhist teachings.  One of the many things that drew me to Buddhism was the non-judgemental nature of the religion or, more accurately to me, the philosophy.  It is the first 'religion' I have experienced where no claims are made to the rightness of Buddhism as opposed to other religions.  Buddhism is Buddhism, take it or leave it.  Or take some of it and leave the rest.  Anyway, this week we spoke about how we found this particular path.  Because of these testimonials, I have found myself thinking a lot about judgementalism.  As I drove down the road today, a thought came to mind.

Let's say your neighbor was speaking with you about a coworker whose cousin worked for a man whose wife had an uncle who was amazing.  This man helped people find cures for their illnesses, donated money to charities, volunteered at homeless shelters, and spent every minute of the day trying to do good deeds and help people be happy.

Now you may not know your neighbor's coworker.  Or her cousin.  Or her boss or his wife.  And you may not even know this kind uncle.  But, I imagine you would have good feelings about a person who was so dedicated to doing kind things.  Even without knowing this person, you would have to have some level of respect for the type of person he seemed to be according to what you heard.

Why is it that when some people hear of another's beliefs, even if they are based in kindness, it is so often judged as 'wrong' or 'a mistaken path' or that the person is seeking answers in the wrong places?  Why can't we just see the positive aspects of each religion and appreciate the goodness in each?  Why, if someone isn't a practicing Christian, do so many people need to vocalize their opinions about the error of their ways?  Aside from someone worshiping evil, there are so many beautiful concepts in so many different religions.

I like to think of this spiritual variety as a sort of "spiritual buffet" served on a bed of beautiful, leafy greens.  On one bed of greens, you have Baptist teachings.  On another, you have Catholic catechism.  On another, Wiccan.  So many to pick from on down the line through Buddhism, Judaiism, Hinduism, Taoism, etcetera, etcetera.   Even at a dinner buffet, not everyone chooses the same things to eat.  Each has different needs, concepts, limits of understanding, personal history.  But everyone benefits from eating.

The interesting thing about this spiritual buffet is that the most important part of the buffet is the foundation of it.  The beautiful, leafy greens.  Full of nutrients and benefits, the greens are the 'love' of the buffet.  The foundation of all the religions, you will find, is the same.  Love each other.  Be kind to each other.  Treat others with respect.  Think kind thoughts, say kind things, do kind deeds, help your fellow man.

So even though we all look different and sound different, we all know what we need to do.  We need to be kind to each other, compassionate and true.  It's as easy as that.  It doesn't really matter what you call it.

Many great people in history told us just that.  Abraham, Jesus, Buddha, Moses, and more.  Maybe if we paid more attention to the similarities of our varying beliefs instead of the differences, we would find more peace and realize we have more in common than we think.

The Color Blue

Blue has always been my favorite color.  Everybody knows the color blue, right?   Not really. 

If someone were visually impaired or blind since birth, they may have no clue what color is at all, never mind the actual color of blue.  And, for all we know, what one person sees as blue could be another person’s red.  When we learned our colors from our parents and teachers, they pointed to a color and said "this is blue."  Whatever color you saw at the area they pointed to is now known to you as "blue."  Maybe, what I see as yellow you call blue.  Perhaps our brains don't interpret these color impulses the same and you have a totally different color-scape than I do with colors I wouldn’t even recognize.  

I suppose there is no way to know for sure without being able to sync our brains perceptions and see through another's eyes.  And that's not something we will likely be able to do any time soon.

But, what if we just try to describe it.  The color blue. To describe a color without using color as a point of reference is impossible.  "It's blue, like the sky!"  Well, if you can't see the sky, that description would not be at all helpful.  

Trying to explain something to someone requires a common point of reference to base your explanation on.   Without that, we cannot communicate a thought, idea or situation. Can a color be described to someone who cannot see,  an aroma to someone who cannot smell or a sound to someone who cannot hear?

Which (finally!) brings me to my point.  There is no way to explain what having a brain injury is like to someone who does not have a brain injury.   The only people who truly understand are the ones who live with it themselves.  The “insiders”.

As hard as our friends, family and significant others try, they will never truly be able to understand.  To them, it is something that happens at certain events or places or while trying to do something in particular.  To us, it never goes away.  We take it with us wherever we go.  We don't forget it because it is part of us.  It is a reality that we become 'accustomed' to or learn to accept.  

This is not a pity party.  For me, it is a brain injury; for someone else, it is being a quadriplegic, someone else, losing a child -- everyone has, as they say, a torch to bear.  As much as we want to empathize and understand what others are going through, we have to accept the limitations of our abilities to do so. 

I believe accepting the fact that people can not completely understand is critical for true acceptance of our situation, whatever that may be.  For me, it is time to stop trying to explain .  Time to let go of the frustration that arises by the repeated unsuccessful attempts to explain why I behave the way I do, why I need certain modifications to my environment and why I react the way I do. 

This realization is very new to me.  I am sharing it for others in the same or similar situation because I truly believe this is a key element to full healing… not worrying so much about others understanding.  Somehow, this realization is quite liberating for me. Would I keep trying, unsuccessfully, to describe the color blue to a blind person? Of course not.  

I write this because I know I am not alone here.   I feel sorry that my limitations can be an imposition to those around me; for example, I cannot have a conversation if there is loud music or noise in the environment.  Others may forget this but one thing remains constant.  I can NOT have a conversation when there is loud music or noise in the environment.  I don't have to remember that this is the case, it is just the case.  It is as likely for me to be able to have that conversation as it would be for a person to jump off a skyscraper and fly to the ground.  

So now, after 17 years of this being my reality, and after 17 years of trying to get those around me to understand (so I don’t feel like such a burden to them) I am going to accept the fact that it is impossible for brain injury "outsiders" to truly understand.  I cannot continue to rely on others to recognize environments or identify situations which are painfully difficult.  That is something I am just going to have to take full responsibility of for myself.

For so long I have believed others may understand… maybe partly because I have been told so often  'I get it', 'I see it', 'I understand."  How can I expect someone to truly understand without any point of personal reference to base their understanding on?

It  is like trying to describe the color blue to someone.  It just can't be done.  

I have liberated myself.  I hope I have helped to liberate at least one other in the process.