A Life Unmeasured


The last entry has left many of those closest to me in deep anguish.  The sad truth of being close to someone is that when they suffer you suffer as well.  To compound the suffering, I feel the suffering of those that I care for and it seems to create a vicious cycle.  I wish that my coping mechanism of humor translated in my writing but it doesn't.  Whenever I try, it either seems manufactured or overwhelmingly offensive.  I have tried to look to the brighter side of what has happened in the past week but it has left me with many unanswered questions, a basket full of anger and this unexpected sense of urgency.
So many people have complemented me on my strength, my courage and my overall outlook of hope for a better world since I started writing the blog last year.  I try to stay strong as much as I can not only for myself, but for my wife and two daughters.  I don't know if it has been the drastic change in my condition in the past two weeks or just a temporary state of panic, but I have this urgency to get going on my mindblind.orgproject.  I won't call it a part of a bucket list because I haven't written the details of everything that I want to do before I die.  Believe it or not, I like to live in the moment and just go with it or at least I thought that I did.  I thought that I was willing to live in uncertainty, take risks and let what happens happen.  The truth is, I do have very weak moments, I do have uncertainty and I do not want to take illogical risks just because of a doctor's hunch.  So yes, I am very human.  I want everyone to know that I am not always this strong person and that I can endure anything, everything and just bulldoze through what life stacks in front of me.  I would like to, but that would be untrue.  
Just today, I went out looking for reusable cold packs to help with the swelling that has spread from my hands, to my arms into my shoulders.  The same swelling that has spread from my feet, to my ankles and all the way up my legs.  I found a bench in Target and just sat there for thirty minutes or so.  There was a terrible storm outside that ironically mimicked how I felt inside.  I have off and on numbness, tingling and anger with what is going on with my body.  I feel that I have fought so hard only to have 20 or even more marathons to look forward to with the reward being life.  Not a great life, just life and even that is in question.  So with all of this pain, anger and so many emotions that I don't know how to deal with, I have thought of what will be my legacy and how I will be measured.  
I have two great fears when it comes to dealing with when it is my time to die.  One is dying a very slow, painful death.  I have watched two people in my life do this and it is no testament to a man's legacy.  No one wants to be remembered as the guy that suffered painfully and courageously for so many years and then died.  My other great fear is to die leaving so many things undone.  I want my legacy to be one of hope, happiness and a better world for not only my daughters, but their children as well.  So I am left with this always moving, immeasurable legacy and an unknown amount of time.  
This last progression has been a wake-up call for even me.  Pain pills are like tic tacs now and the increased Adderall just makes me this strange character like Willy Wonka on speed.  There is humor but there is no social awareness because I want everyone to hear what I have to say.  For those that have to endure this, I do extend my apologies and promise that it will probably happen again but I won't get mad if you just say, "Wrap it up B!".  This is what my wife does and it makes me laugh because I do realize that I ramble when I talk.  When I write, I can always go back and delete the excess.  You would never want me to do a live blog at any point in the near future because it would be a circle of madness!
This last series of events has my doctors scrambling because the monster is waking up and he is not happy.  We are not sure what the monster is and how it is causing this.  But as my rheumatologist said last week holding my hand, "This is real.  This, is real."  The reality has crept in and now I want to move forward with mindblind.org (read about it on my projects tab, it is not an active site yet but I do own the URL) but I have some real issues:  
a) I have no energy or ability to deal with the stress in forming this really cool non-profitb) I have no money to devote to the development of the custom web-engine that I am going to get Sprocket Creative to build (that's right Dwayne, Jared and James you guys may be getting the hardest, most awe-inspiring, life-changing project that you have ever done.c) I need volunteers to help fund getting this off the ground and run it.  I will give my vision and follow along but I have to wall off as much stress as possible right now. d) I need people that really have the passion, the core belief and the energy and availability to get this moving.
I believe that the timing is right in our world for mindblind.org to be introduced.  It is time for mindblind.org to start helping "we the people" define what the real problems are in our country, develop solutions for these problems and hold other organizations and especially our government accountable to what needs to change and what needs to be done.  I am tired of the protests, the tea parties and the hypocrisy that holds true to all political parties, religions and the general way of thinking that America has become accustomed to, complains about, incites fear over, but never puts forth a solution that is untainted monetarily, one-hundred percent true and really defines ALL of the key components, let alone even comes close to solving the core problems.  It is incredibly complex.  It may take a long time to make progress.  But the good thing is that I still believe America is a country founded on principles of escaping tyranny, fighting injustice and always a hope for a better life.  We have become clouded in our principles and how we define a better life.  Enticing offers of material goods and a life beyond our true means but made available by corporate greed has set our country back two generations.  Yes, America does make major mistakes but we do have an astounding ability to correct ourselves and make things even better in the long run.  Even if we can't wrap our minds around how this could possibly work or the amount of work it would take, shouldn't we give ourselves the opportunity to at the very least start with the belief that we can change?
So yes this project is the main project that I want to, at the very least get started.  I don't care so much to be measured by how strong I was through the course of this disease.  Being measured monetarily or by that type of accomplishment well, means absolutely nothing to me now especially without the health to enjoy it or even better be a good steward of what I had earned.  If I have to be measured, then I want what mindblind.orgwill be to be the measure by which I leave behind.  I want something in place where people can protest, have the effect of tea parties and even stand at the White House gate but in a peaceful, non-partisan, one hundred percent truthful way with most never having to miss a day of work or set foot out of the house to do so.  But don't let me stop those of you that do protest or go to tea parties.  Given the right non-partisan mindset, the tea parties could bring light to key issues.  Having angry, close-minded fear mongers scream party blind-lines and idiocracies will never do good things.  Good things can come from good things.  Good things almost never come from hate, fear and a closed mind.  Mindblind.org will not support six-figure and growing paid speakers to instill fear, paranoia and half-truths into an already contemptuous country (and then make millions to boot).  No, the folks behind mindblind.org will be in it to make this world a better place.  And I think there is no better measure for our lives.