Run Dry



Run Dry

Feelings don't often run dry.  At times, I feel like I have come up empty after so many trials, after so many times going through the same thing.  Over and over again, I am pushed past the brink of what I can deal with to what I feel is the point of running dry, void of anything left.

But you can't really empty a feeling as long as memory resides.  My mind is often a steel trap of feelings, emotions and experiences.  A lifetime of happiness sometimes is replaced by one bad instance, one bad experience or a tough trial.  I can tell you that after spending what is approaching a quarter life of trial, I feel that I have run dry.

But really I haven't.  For some reason, I still run like that old car that shouldn't be able to still get around.  I remember hearing the advice of elders that I ignored in my youth that is becoming true wisdom.  I couldn't fathom nor did I relate to the suffering of others.  I did however wonder how a person could keep running for so long when the only reward was a life of more suffering.

The realization then came to me that a life of suffering is better than a life of oblivion.  Suffering is something that is defining me less each day.  Sure it is something that I deal with on a daily basis.  It is something that I can't personally glaze over.  But I can say that there is more to life even when I feel like I've run dry.  There is an dwindling emptiness that is being filled.

It isn't being filled by another person but it is being filled by having a purpose.  It is filled by having a hope that I will be able to help others that share this same path of suffering.  I want to help others get past the yolk of suffering and find the freedom to live life.  It isn't because I find some egotistical fulfillment in this.  It would be much easier to focus only on my struggles in my own fulfillment.  But I feel like I can't have gone through all of this, I can't keep going through all this without realizing that my life is being tugged by what connects us all.  That feeling that an unseen force is tugging me towards others like me.  Every time I stray from this path, I am painfully reminded of what my purpose in this life is.

Even when I feel like I am empty, when I feel like I have run dry in my soul, there is something that pulls me back to where this place of balance is.  Not a place of suffering and self loathing.  But to a place of solace.  A happiness that is hard to explain.  A life that I can't explain that makes sense to me.  Sure I struggle against the tide of life.  I am very human to a painful degree.  But when I feel that I am empty and I cannot go any further, I feel the light of others that haven't given in, haven't given up.  So it isn't me powering this engine of hope, it is the power of others.  It is the binding that we all share.  Never ignore that tugging you feel to help others.  Because one day, it may be what sustains you and keeps you going.

Faith


So I was once asked, "how can you go through what you've been through and still believe in God or a greater force in the universe?"  It is a fair question. After all, our natural logic would say that if so much bad has happened to you and you see no end, how can you believe there is some unseen force out there controlling the universe. We believe this because we expect things to go our way. We expect to be in control of our health, our work and what we get out of life.

But if we switch the scenario and do believe that we have worked hard, eaten right and done all the right things and everything goes mostly our way then how can you believe in an unseen force then guiding your life?  If there is no room for doubt in what you believe, then your faith truly cannot be tested. One might say you lack faith because you haven't been tested.

So what do you believe then when you are tested. I can't answer that for you personally. But here is what I have learned. In the process of losing everything, I have had to also let go and surrender those things to an unseen hand, an unseen force guiding my life. I realize with each step how little control I have over this life. But I am thankful for what life I have been given. For what is greater than being held tightly by the unseen hand, the guiding force of the universe?  Nothing if you allow yourself to surrender and learn what is being shown to you.

Breaking and molding, crushing you at times, this force can be very real, very painful and the greatest view of life's essence itself.

A greater gift is to share your story with others so that they may know how precious this gift of life is and how beautiful it can become. You can help not only those suffering and searching for peace but also awaken those around you to help those in need. Only a few are chosen to tell this tale. None live to tell this tale without first suffering or caring so deeply for others that they lose themselves in the process completely. It is only when we are completely immersed in this process that our eyes are opened to the truths in life, the real truths.

Turning Page



I have been told that the only path to true forgiveness is by letting go of the past.  Many people say the words, including me, but they aren’t really ready for surrendering to letting go.  It is a very painful process.  When I talk about forgiveness, most people assume it is about transgressions that others have bestowed upon themselves.  That is only half of it.  Most of the time we forget to forgive ourselves as well for our own transgression against others.  We can’t move forward in life without letting go of what we cannot change.
I was in a group counseling session last year learning how to transition the best life for my two girls.  The main purpose was learning how to transition from one unhappy home to two happier, well-adjusted homes after divorce.  The two child psychologists spent four hours explaining the process of not only raising the children the right way without anger, but also how to give the children room and an environment to flourish and love both parents without barriers. 

One man stood up during the session about two hours in and really said that he was having a hard time forgiving his wife for what she did.  He felt that he was wronged in the end and was having to pay not only emotionally and spiritually but financially being punished as well.  I expected a short snippet of contacting a mediator or lawyer by the psychologists.  Instead one of the child psychologists said, “You have to just let it go for the sake of your children.  Whatever has happened has happened.  And it happened for a reason.  You may not understand that reason right now but eventually you will.”  The man asked the psychologist, “then how do I get to that point and find forgiveness for my wife?”  The psychologist without pause said, “Tell her thank you for the things that she did for you and the things that she does right for the children.  Hate and thankfulness cannot live in the same environment.  Don’t allow hate to consume you.  Your children will pick up on that and that will stick with them their whole life.”

I was really taken back by the profound statement.  I wished that I had heard this as a child.  It would have made the greatest difference in my life in helping move past so many past transgressions of others against me and my transgressions towards others.  By thanking a person for what they have done right in your life, you cannot express hate and regret in the same space.  It feels as if your heart, at least for that one moment, isn’t so empty anymore and you feel something besides that emptiness, that pain.

I think forgiving my failures may be the hardest part of this transition in life for me.  The previous chapter of my story has been a painful one that I would like to close and turn the page.  Like any good book, in life there are moments of joy, pain, celebration, suffering and hopefully redemption with all things coming together in the end.  As we travel through a good book and life, it feels good to finish a chapter, good or bad, and turn the page to see what is next.  We can reread the parts we have finished or the past but we can’t change how it was written.  We can skip ahead forward, but we will miss the part about how we arrived there.  In the book of life, we can only live in the moment, the chapter we are writing right now.  After writing the last chapter of our book, the book will be closed and that will be the legacy we leave behind for others to follow and hopefully find inspiration and hope.

Fear of the past and fear of the future is a choice.  It is the only thing that you can control.  The past has happened and you should not fear it anymore.  It doesn’t define you.  Yes you have gone through it and it has molded your character, but it doesn’t define who you are fully.  Fear of the future is always uncertain so why fear it.  We cannot control our future fully.  Whether we think we know it or not, the only certainty in life is that everything can change.  In fact, sometimes everything must change to get where we need to be.  Sometimes this is a painful reality, sometimes it is a wonderful discovery.

I have been through so many things to get to this chapter of my life.  My turning page is here.  This new chapter is one that I wish to write in the moment, without fear of the past or fear of the future.  I still struggle with my fears, forgiveness and so many other things, but at least I am aware of my “demons” and what only I can work on myself to build a better person.  I am working on becoming a better person for myself, for my children and then to help others.  Anything beyond that would be an unexpected welcome in this lifetime.  But I still have hope for the future and not so much fear anymore. 

I do have bad days that consume me.  Each day I work on having less of those that I can control.  I live in the moment, the hour, the minute that I am in and I am turning the page to move forward.

Clarity



What is something that almost everyone struggles with in life?  Clarity.  We ask ourselves over and over what will tomorrow bring, what is my five-year plan, will I live another day, when will I meet my soulmate, why am I in this relationship...  The string of why's and what if's are infinite.  Yet we when look to our past, we can see then and only then an almost perfect clarity.  We can see our mistakes, what we did right, what we did wrong and also how we got to where we are right at this moment.  It is when we try to look forward that things can get confusing.


I remember my grandfather in his later years.  He always had such a peace about things.  It was like he had all the answers and he had everything figured out.  The truth is he had learned from his past that nothing is truly in our control and everything can change.  Once you realize that then your perspective on life changes.  That perspective in itself is a moment of clarity.


To gain this clarity perspective, you must first surrender to the fact that you can only control so much.  You can't truly control other people, gravity, bad luck, good luck or how the chips may fall if you will.  You might be able to control some things but if you look at the bigger picture many times you are reacting to the information that you have available to you.  You are also reacting to what you think you can do and what you see as your abilities or restraints in life.


To take things another step towards clarity, you must realize that not only are you not fully in control of you, others are not in control of you either.  We are all tethered together by forces we cannot see.  When something happens to one person, it usually effects others.  The bigger the splash, the bigger the wave or effect.  Sometimes we are moved by someone's reaction we see.  Sometimes we are moved by someone's words or how they eloquently gave us some knowledge we were seeking.  We gain the most clarity by listening to others that have experienced what we have not.  Those that have suffered, those that have lived through different things and people that seem to be able to always extract learning from experience.


Clarity has no formula.  I can't tell you what to do to achieve full clarity.  I can only share with you what I know at the moment.  And that is you must be at peace within yourself knowing that you are not in complete control of everything.  And that is ok.  Remember that no one else is either.  They may seem clear but most people battle the same issues of clarity or haven't experienced the realization that they truly are not in control.  Maybe those that think they have it all figured out have no clarity at all, just ignorant bliss.  Maybe those that realize and relinquish that they are not in control can smile because they have true clarity.


The past five years have been a gut check for me.  I thought that I had everything figured out.  I had a five, heck even a ten-year plan for what I was going to do.  Then I got sick, couldn't work anymore, lost my house, my car, all my savings until finally I lost my marriage.  At each point of loss, I would always say this must be the bottom and clarity will come soon.  And clarity never came completely at any point.  Sure I could look back and see things clearly.  But looking forward was thick mist, a fog if you will of uncertainties.


I would win some battles with my health and then lose ten others.  The weight of the world kept sitting on my shoulders until one day I realized that in order to survive, in order to thrive I had to let go of the things that I could not control.  I had to surrender to the fact that I can only do so much, can only try to be the best person I can be and then watch my seeds grow.


Sometimes what I would plant would be beautiful.  Sometimes the seeds never broke the soil.  But I was in control of planting the seeds and at least trying.  Sitting idle while the world went by wasn't going to help me gain clarity, get better or save my marriage.  Was it and is it a painful transition, sure it is.  But I have made a choice to go down a path. And down that path I will go until a better path comes before me or I can go no further.


What became clear to me is that I put the biggest limitations on myself out of fear or doubt.  When I cast aside those fears and doubts, I realized that I was holding myself back more than disease, what I thought others thought of me and even the circumstances out of my control.  I was holding myself back because I was afraid to fail, afraid to try and afraid to have more pain.  That's when I started seeing life a little more clearer.


Things began to change and the weight of expectations began to lift.  Do I have everything figured out?  Not even close.  Will I ever?  I hope not.  If I think I have everything figured out then I will have lost sight of the truth or I will be looking back on life instead of forward.  There are times that I still walk in fog but at least I have more and more days now that I don't worry about what tomorrow may hold.  And to me that is peace, that is clarity.

Purpose, Passion and Hope


Every person must one day in life face a simple fact.  None of us are completely in control of our fate.  There are many forces tugging us in every direction that we try to mold and shape in a life we feel worth living.  Bad things happen.  Good things happen.  We struggle in hard times and we find hope in the little things that do go our way.

For the past year, I have been making significant physical progress with my health.  My back has healed very well and I am able to do more and more each week.  The pain that was a daily burden in my body is still there, but I have found ways to work around it, accept it and at times forget completely about it.  My mind seems to be getting stronger and my spirit is gaining ground.

This year has been a year of surrender for me.  I have had to surrender that I am not in control of the things around me, but I can change my attitude about things and keep fighting.  Now that I can say that I have completely lost my old life and the things that used to define me, I have started over.  Not just from a physical standpoint, but from an emotional and spiritual standpoint as well.  I am trying to bring forth the best person that I can be, shedding the scars of the past.  It is a process that I will write more about one day in detail.  For now just know that it has been a painful and also a liberating process at the same time.

There are so many times in life where we have to let go of things that we once loved, people that we once loved and even places that captured our hearts.  These things will happen to all of us throughout our lives.  It is important that we take the time to let them go properly and say goodbye.  Especially to the people that were a part of our lives and let them know how much we appreciate the good things we have learned from them and how they helped us to become better inside and out.  If we don't take the time to do this and let go properly, life will eventually circle around and leave us with regret or emptiness from missing the opportunity to let go properly.  I can honestly say that I have learned this the hard way and have been hit by that circle of life not cherishing those people, those moments properly.  But I am realizing this and becoming more and more thankful for the smallest pieces of hope that past my way.  For once, I am savoring every drop of hope that does come even if one day the flood gates of hope open and I drown in it.  I will bask and not take one ounce of hope for granted.  For it is that hope that has driven me this far.  A hope that life is not finished with me yet by far and that there is a greater purpose beyond the journey I've travelled to this point.

Hope is a good thing, a very good thing.  But hope only feeds what drives our purpose and that is passion.  Purpose, Passion and Hope are the three things that define, sustain and keep us moving forward to a better life (*much more to come on this topic).  It may be a life completely different than we imagined and the molding, breaking and building process is different for each one of us.  Thankfully, not all of us have to endure losing everything to realize how we can find our purpose in life.  I'd like to think that those of us that do lose so much have been chosen to do greater things if we allow ourselves to surrender to the process.  I have fought this for so long thinking that I could become the man that I used to be on my own.  I was wrong and I will never be that same man again.  And this is a good thing.  For I have seen my mistakes in life and I am still learning there is so much more that I can do.  But I could only do this by totally surrendering the person I was before and all the things that I thought I had to control.  Turns out I never really was in control of those things anyway.

So take a moment to be thankful for those little moments of hope.  Whether it be something as great as a good day or a hug/smile from a friend.  Maybe it is from old friends and family that support you and have never given up or a new friend that lifts your spirits and gives you greater hope.  Live life with purpose, fill it with passion and above all keep hope alive that life can be a wonderful thing even if that means letting go and starting over.  Don't dwell in disaster, failure or things you cannot control.  Trust me, I have been in that pool and you can't swim in it, only drown.  Never lose hope that good things can still happen even when all else is lost.

Purpose, Passion and Hope

Every person must one day in life face a simple fact.  None of us are completely in control of our fate.  There are many forces tugging us in every direction that we try to mold and shape in a life we feel worth living.  Bad things happen.  Good things happen.  We struggle in hard times and we find hope in the little things that do go our way.

For the past year, I have been making significant physical progress with my health.  My back has healed very well and I am able to do more and more each week.  The pain that was a daily burden in my body is still there, but I have found ways to work around it, accept it and at times forget completely about it.  My mind seems to be getting stronger and my spirit is gaining ground.

This year has been a year of surrender for me.  I have had to surrender that I am not in control of the things around me, but I can change my attitude about things and keep fighting.  Now that I can say that I have completely lost my old life and the things that used to define me, I have started over.  Not just from a physical standpoint, but from an emotional and spiritual standpoint as well.  I am trying to bring forth the best person that I can be, shedding the scars of the past.  It is a process that I will write more about one day in detail.  For now just know that it has been a painful and also a liberating process at the same time.

There are so many times in life where we have to let go of things that we once loved, people that we once loved and even places that captured our hearts.  These things will happen to all of us throughout our lives.  It is important that we take the time to let them go properly and say goodbye.  Especially to the people that were a part of our lives and let them know how much we appreciate the good things we have learned from them and how they helped us to become better inside and out.  If we don't take the time to do this and let go properly, life will eventually circle around and leave us with regret or emptiness from missing the opportunity to let go properly.  I can honestly say that I have learned this the hard way and have been hit by that circle of life not cherishing those people, those moments properly.  But I am realizing this and becoming more and more thankful for the smallest pieces of hope that past my way.  For once, I am savoring every drop of hope that does come even if one day the flood gates of hope open and I drown in it.  I will bask and not take one ounce of hope for granted.  For it is that hope that has driven me this far.  A hope that life is not finished with me yet by far and that there is a greater purpose beyond the journey I've travelled to this point.

Hope is a good thing, a very good thing.  But hope only feeds what drives our purpose and that is passion.  Purpose, Passion and Hope are the three things that define, sustain and keep us moving forward to a better life (*much more to come on this topic).  It may be a life completely different than we imagined and the molding, breaking and building process is different for each one of us.  Thankfully, not all of us have to endure losing everything to realize how we can find our purpose in life.  I'd like to think that those of us that do lose so much have been chosen to do greater things if we allow ourselves to surrender to the process.  I have fought this for so long thinking that I could become the man that I used to be on my own.  I was wrong and I will never be that same man again.  And this is a good thing.  For I have seen my mistakes in life and I am still learning there is so much more that I can do.  But I could only do this by totally surrendering the person I was before and all the things that I thought I had to control.  Turns out I never really was in control of those things anyway.

So take a moment to be thankful for those little moments of hope.  Whether it be something as great as a good day or a hug/smile from a friend.  Maybe it is from old friends and family that support you and have never given up or a new friend that lifts your spirits and gives you greater hope.  Live life with purpose, fill it with passion and above all keep hope alive that life can be a wonderful thing even if that means letting go and starting over.  Don't dwell in disaster, failure or things you cannot control.  Trust me, I have been in that pool and you can't swim in it, only drown.  Never lose hope that good things can still happen even when all else is lost.

Life is Beautiful




Every night, I lay awake and think of life.  Life is such a wondrous and beautiful thing that I used to take for granted.  I always thought that I was living life to the fullest back before I became where I am today.  Every day was just like every other day except for special occasions and things planned outside of the ordinary.  Life was easy and everything seemed to be falling into place.  That is what I thought a beautiful life was.  It wasn't until everything changed that I realized that life can be so much more.

Life can be something of a mystery.  We read books, magazines and watch everything about life.  I often get caught in that watching phase myself looking at what a marvelous thing life can be.  What really gets me is when I step back and realize that life is here, it is now and it is what I am doing.  When you really think about it, you can make life what you want.  It can be exciting, it can be boring, it can be like everyone else or something extraordinarily different.  Our only limitations on what life can be are what we are physically able to do and the time that we have to do it in.

I used to live life by how much I could get done in a day.  How much could I complete or accomplish before I went to bed.  Now that was living for me.  These days, I struggle to get one thing done without physically collapsing.  It isn't every day that is like that but my life is definitely unpredictable.  An unpredictable life lends itself to caution and not making plans.  I've tried making plans and constantly coming up short.  I've tried not making plans and being happy when I could do anything.  Both ways have good and bad points. 

It is said that a man makes his plans and God directs his path.  What happens when a man stops making plans?  Does he wither and die?  Does he get pushed along in the sand like a shell from the ocean tide?  There can be a season in which a person can live without plans.  When your health is taken from you and everything is questionable, even hour to hour, you take a swipe at making plans.  Sometimes they work out and sometimes they don't.  I get caught up in this frustration often and it doesn't help me see and understand life.  So I tried, just for a while, to just watch the world.  I don't mean sit down and not engage with the world.  I mean meet the world where you are and watch how people engage with each other.  In this phase of my life, I am learning a lot about the world around me and what is really important.  If it were not for my condition, I would be missing watching the very fabric of life unfold before my eyes.

Some mornings I have the strength to walk for a little while.  I see hundreds of cars rushing by filled with people going somewhere, doing something.  I often wonder if they are going to work.  Do they have a big meeting that day or are they worried about paying bills this month?  My headphones are always are alway firmly embedded in my ears so that I have my own soundtrack to life instead of the noise.  The noise around us is what distracts us from really seeing the bigger picture of what's going on in life.  Your noise may be money, your job, a meeting you're going to, the kids, getting married, having a baby, so many different noises both bad and good that can crowd out observation and life.  I like to smile at the cars going by to see if someone will smile back.  Chances are someone will and I hope that small smile will dampen their noise if just for a moment.

My life has been simplified to nothing, well nothing as far as material things.  I own next to nothing, I don't have too much more to lose and I live by the kindness of others.  I do have two wonderful and beautiful daughters that I miss so very much.  I hope to be with them again someday.  That in itself will be a great life. When you are taken down to your bones then nothing can be taken for granted anymore.  The blinders are down and you are exposed for who you are and everything you do is watched carefully.  Not because you are something special per se, but because you are different than everyone else.  People are curious about what a simple life consists of and the barriers that you face every day.  No one cares about the person that can do everything and overloads themselves with more and more.  Those people are great to watch and I wish that I had half of their energy.  But at the end of the day, I ask myself what would I do if I was given a second chance at this life.  What would I do if I became well enough to do more.

I have plans sure, noble plans even.  But the true test would be when that power was given back to me.  Would I stay true to my heart and help others or would I seek to make lots of money again.  My hope would be that I would be able to help others and make a difference in this world.  Money leaves you as fast as it comes so I have no desire to chase that life again.  But it is funny how it is always in the back of my mind.  If I had money, I always think, I could do this and this and this.  Well that just isn't true for me.  If I had money, I would probably just spend more time in research hospitals looking for help and answers.  Which, by the way, is not living.  I found that out the hard way.  I could stay in my own home or lay on a beach trying to get better, write or contemplate life and healing with money.  But that doesn't change who or where I am in life.  I could use some sun though seriously.

So why do I write something entitled "Life is Beautiful" when clearly I am stuck in this seemingly infinite abyss of suffering, poverty with no end in sight?  I'll tell you why; expectation and hope.  Even in the deepest, darkest pit of suffering there is hope and an expectation that things can always get better.  Sure the opposite can be true as well but that is when you lay face down in the pit.  When you are at the bottom of life and you simply roll over face up, life appears above you.  There is light in contrast to the darkness that surrounds you.  Eventually you have the courage to get up on your knees and maybe even stand at the bottom of the pit.  Sure you may fall again but there is something within us that wants us to overcome.  It is hard to explain in simple terms so I will just say that my spirit knows there is something greater coming.  It may not be fulfilled in this life but I haven't given up on that.  It is that hope, that expectation that allows me to look at all the people around me with normal lives and normal problems and see the extraordinary.  I see the potential of so much more in humanity.  I see a better world and a world where so many of us are not mindblind to the reality that passes us by.  I see a world not driven by consumption but service to others.  A world of kindness and peace.

I also see the clouds that roll by and the overwhelming darkness that is the reality we live in.  I don't know how to change the world and roll back the clouds.  There are no clever quotes or processes that I possess to change this world overnight.  But I can tell you that as dark as life can be, it can be darker still if we plant our faces down and don't try to change things.  Trust me, I have plenty of mud on my face from rolling over face down.  Every day is a journey and life, no matter the direction, can always become greater than we can imagine.

How Good is Good Enough



It is hard to write and open your life up during a time such as this.  A time such as the period that I am going through.  It is so deeply personal, intimate and painful.  Some people close to me know most of the story but I haven't shared what's going on with the rest of those that support me.  Well, I can't share the details.  What is going on is too painful for consumption.
I lay here awake again at two in the morning unable to sleep.  I am alone, away from my girls and my marriage is ending.  There are so many thoughts that race through my mind about how this could happen. There are also thoughts about could anything different have been done.
When you are fully well in life and health, people expect you to be able to overcome anything.  To pull up your bootstraps and get up and fight for everything.  I have always been that person.  In sickness, I have had to change how I have fought because I lack the ability and stamina to fight like most people.  I could say that my neurologic and systemic disease has robbed me of life.  Some would call me a victim.  I could say that even laying down, I was always fighting.  Some would harshly say get off your butt and fight harder.  There is no winning when things fail.  When your best isn't good enough for others, they tear you down and spit you out.  It is painful.
I was watching Mr. Holland's Opus the other day and I was reminded of how even at your best you are not good enough.  In the movie, Mr. Holland worked all day and all night to try and make things work in his life.  But in the end, he was not giving his hearing impaired son what he needed.  He shouted "I'm doing my best!".  To which his wife replied "well your best is not good enough!".
There are times when we do need to hear this.  It is painful to hear especially when you are not well and already feel like everything is a painful task.  But I was reminded of this when I had to leave and move out on my own.  I realized how much more I could do.  The sad part is, it isn't very much.  My best was being given as I suspected but it wasn't good enough.  So I have repeated things in my mind a thousand times, how good is good enough.
My simple answer is this.  At the end of the day, I have given my heart and my soul for the ones I love.  Some have stuck around and been steadfast and supportive.  Some, painfully, have decided I don't meet their expectations and have moved on.  This is the hardest thing I have had to reconcile with in my life.  I have always been a fighter and I will never stop.  The people that know me best, with one exception, have stood by me without wavering and supported me till this day.  The exception is the most painful one of all.  It is the one I can't talk about.  It is the one that has dealt me a blow so painful that it has dragged my heart and soul to depths that I may never recover from.  But here at the bottom, I am slowly, painfully try to stand again.  My health is failing again, I am alone and starting over.  And that was my good enough that failed.
Sometimes our best efforts do fail.  We cannot control our destiny.  We think that we are in control of our lives but it is all an illusion.  One minute you can be healthy and working, the next minute you can be diseased and homeless.  It can happen to anyone at anytime.  I'm not here seeking compassion for what is going on.  I have been dealt what I have been dealt.  I will keep moving on as I always have ever more aware of how painful this journey has been.
I have made some great strides this year in many areas but they go unseen by many.  I no longer have to use a cane to walk.  I voluntarily and against medical advice, weened off of all pain medications even though I do suffer from immense systemic pain constantly.  I did this as a part of my good enough.  To prove things that I shouldn't have to.  But also to do things that are better for my body long term.  I have been working intensely with meditation and biofeedback therapy to help my mind work around the pain my body is manifesting.  It doesn't always work but I am slowly making progress for the first time in five years in this area.
I have accepted my fate of pain and suffering, but not imminent death.  I won't accept death until it takes me.  Sure I won't live as long as every one else but that's ok.  I'll take whatever I have been given and work with it.  None of us truly know how long we have to live we just expect it.  Nothing else matters to me other than my two girls and getting as well as I can to help others.  I want to start missionary work if my body and mind can get stable enough for the task.  It is the hardest thing not having control of your mind, your logic, memory and thinking.  My mind most days is a fog that I have to carefully and painfully sift through to do simple tasks.  It is hard to understand what is going on but I do have hope that the fog will one day lift and I can begin to heal in that area.
So I leave with this; my best is what it is and it always will be my best.  You are allowed your judgement and perception but you also should think about your life first and then never judge others.  Accept a person for who they are and treat them as the person they can become, not who you want them to be.  Encouragement and support go a thousand miles further than judgement and condemnation.  For you will find one day, when all the facts are laid out before you, that my good enough was way more than you ever knew about or could possibly comprehend. 

Sand and Stone


I haven't written in a very long time.  I have been going through something so deeply personal that it has taken all of my strength and at times, my will to live.  I'm not saying this out of the need for pity and sympathy but as a cry for help in the most honest and genuine way I can think of possible.

Throughout my life, I have always had this picture of how I wanted my life to be.  A beautiful and caring wife, wonderful kids with kind hearts and for me to be someone more than the average person that you meet on the street.  Someone that when you meet, you instantly have been affected by them.  The theory of celestial mechanics teaches us that when two objects collide, they can never be the same.  The object paths have forever more been changed.

I have always felt that I had some effect on people but no more than the average person.  After going through this illness for the past five years, I have become someone that has been more affected by others it seems than I have on other people.  Some would argue that point and say it is the opposite but that is just how I have felt.  I don't feel that there is ever a person that I meet, talk with briefly through email or really interact with that isn't changed by that collision or interaction.  They may not feel it instantly but I feel it almost every time immediately.

Over the past five years, I have tried to find the best in things throughout the worst experiences of my life.  It has been tough going from having the ideal life you always pictured since a child and then watching that life fall apart as if most of it never happened.  I can tell a sad tale of woe but that isn't what I'm about, you should know that by now.  I have always thanked God for the ground or asked him what my purpose is in this suffering, this breaking and remolding of my life.  Every time things started to make sense, I would be completely broken again.  I think the big problem with being broken is that you try to piece your old life back together with glue or whatever will hold it together.  I have learned the hard way that you can never piece back together things that have been broken by this life.  They have been broken for a reason.  The big question is, at what point will the breaking cease and you are remade into something better, something more useful to humankind.

I won't share what deeply personal new breaking has occurred, but I will say that it is far more than I could have ever prepared myself for and has torn my heart, my soul and even my physical being to shreds. There is no picking up the pieces from the series of events that lead up to this.  There is no changing the past, doing more or trying to fix this broken man.  Because now, than man and everything he believed to be true have been ground to dust.  I won't say that I have lost everything because every time I say that I always find another cliff to blindly fall from.  I want to at some point thank God for the ground, for breaking my fall, for breaking me into something more useable to this world, but I fear that hasn't happened yet.

So I try and move forward.  Every hour is a different emotion and a flood of memories from every face, every sound every word I read.  The tears are slowing down some.  The anger still comes in waves.  I just have to believe that things will somehow get better.  Hour by painful hour, I will myself past my physical state into how I can help others.  Not how I can help myself.  I have no answers for that and I have been buried under that burden for years and it has cost me more than I could have imagined.  The balance has always gone back and forth to trying to do the best for my family and at the same time trying to find a way to get better.  I have failed at both.  So now that I have officially failed, I have to move forward and make sure that my family has the best life they can, I remain balanced in my search for answers, but mainly I realize that I cannot do this alone anymore.

I have always been hesitant and head strong when it comes to asking others for help.  People have always offered supportive, financial and all kinds of help.  I've taken what I have always thought was needed for my family but never saw the true effect my life was having on the one that I loved most dear.  Somewhere along the way, I lost her.  I lost her to this disease, my constant search for answers and being consumed by pain, suffering and my inability to step out of my box to help those closest to me trying to endure me.

So I am listening God, universe, friends and anyone that has been involved throughout my life.  You have my attention.  I'm sorry that I have been so stubborn in my approach to life, but this is new to me too and I don't want to suffer and be in this spotlight.  I never have wanted it.  I have tried my best and failed in so many areas.  And now, I am falling off of another cliff again with no ground in site and darkness surrounding me.  But I haven't given up.  I've come close, too close several times in the past weeks to giving into an easy out, a selfish end.  But I have to fight for my girls.  They deserve better and they deserve my wisdom and my insights on life that no other person will be able to teach them.  They are wonderfully teachable and patient, through thick and thin.  I couldn't ask for better children.  I would say that they deserve so much more in life, but I have learned that deserve has nothing to do with this life.  I've seen the sweetest souls suffer relentlessly and the coldest hearts be rewarded with all of their earthly desires.

I believe that, although broken, my heart is still pure in what it seeks.  I believe that even if my pursuit of helping others and making this a better world is never finished in my lifetime others may just catch on and follow.  I know that there is a lot of healing that needs to happen and I can only do my best to make that happen.  What I will ask from all of those friends and supporters from around this world is to please ask for answers to what this journey is all about.  Ask that I may given strength and knowledge to continue on and fight for my children and all those that cannot fight for themselves.  Help my voice carry further by asking others to join in this fight not just for me and my life, but for the lives of all of those suffering silently every day.  I need a lighted path at my feet showing me a better way.  I need God's light and the light of all of those connected to me to help lift this burden from my shoulders so that I may stand for longer periods and do what is shown for me to do.

I have seen so many things and there are so many things that I know need to be done.  But I need help in every way possible to move forward and promote life where there is death.  To dismantle sorrow where there is suffering and to share a collective story of those that have helped change my life for the better.  I'm bracing for the next impact.  I just hope that there is no more sand but instead  stone, no more suffering without answers and that the light of hope and life shine through brighter than ever.  You don't have to ask what to do for me or for others in need, just do what comes to your heart.  Will you join me and renew this fight?

Golden Fields of Plenty



At the end of every summer, we would begin to cut the green fields of sod.  It was a luscious, green field, the greenest of greens that the cows would always want to dive into rather than the regular green grass and weeds that they were eating.  It made sense, who wouldn't want to run, play, dance and even eat up the luscious fields of green.
I always wondered why we would cut the green sod, let it dry in the sun and then make giant bales of hay.  Then one day it hit me while I was sitting on top of a hay bale.  We set this aside for the winter to help get the cows through the time when there was no green grass.  It was at that time, that the golden hay seemed like a sweet treat to starving cattle.  When there were no fields of green, the sweet hay was what sustained them through the winter.  When the spring came so did the green grass.  We would still put out the hay so it didn't go to waste, but the cows did not attack it like before.  It was just something more to eat.  And cows, they do like to eat all day long.
I used to run across the tops of the hay bales seeing if I could jump from bale to bale without falling in between.  Sometimes I felt like a giant jumping over valleys from mountain top to mountain top only to grow weary and land flat against the side of a hay bale.  Sure it hurt, but I would laugh even if I was alone.  It didn't take much to remind me that I was human but being human as a kid is still a super power.
My uncle Edsel spent many years working his dairy farm and cutting the hay every season, just like his father before him.  One year the size of the farm and the ever growing responsibilities of keeping a farm running literally took his life.  He was out guiding the tractor and hay baler over the cut hay to roll up and tie into huge bales.  He was working late at night, feverishly trying to make ends meet and finish the chores of the day, they never seemed to end.  It wasn't greed or trying to do more than he had to.  It turns out there is a very small window to harvest the hay.  You have to have the right balance of dryness and moisture in order to last the winter, not to mention making it a tasty meal for the cattle.  
While Edsel was gathering the hay, the hay baler suddenly stalled.  The baler rope was caught and he need to fix it to move on.  He was supposed to switch off the tractor and baler for safety, but like he had done hundreds of times before he just hopped off the tractor reached into the baler to fix the problem hoping to move on.
It was an instant that drastically changed his life.  Out in the middle of a country field with no one to hear him scream, the baler pulled him in only stopping him fully from going in was his head crashing against a metal plate.  In an instant, the damage was done and his arms were gone.  He should have died that night, for all logic and reason, for all reasons of timing and the repeated assault on his body, he should have passed that night.
When you hear his story, you will know that he did pass that night for a while, but came to when one of the farm hands was drastically pulling him out of the machine and waiting for help.  Help eventually came but it had been a long time.  I was in disbelief when I heard he survived knowing how long he had open major arterial wounds but somehow managed not to bleed to death in what should have been a matter of minutes, he survived through the damp of night, screaming for his life for well over an hour before he saw an ambulance, many hours before he was flown by life flight to Savannah for major surgery.  I still remember his screams as I came down the hall that night to visit him coming from Statesboro, Georgia and college.  I came because I loved him and his family, but also because I knew that his chances were not good that he would live through that first night.
I kept in touch with Edsel on and off but never really was there for him when I should have been.  I have so many excuses for being busy starting life, then a family and so on, but no real reason for not being there for him.  It wasn't until a few years ago that we started talking again and it was if we hadn't missed a beat.  And what brought us together was the tragedy and pain that has beset my life.  He understood my pain and how it changed his life overnight.  We don't pretend to understand the depths of each other's pain because pain is pain and neither of us would trade each other's fate.
At the time of his accident, the grass was looking greener and business was going well.  At the time of my accident, the grass was looking greener and things had been going well.  We were both struck in our prime, both struck down in an instant.  Both left to ponder what was left to do in our lives and how long do we have to suffer.
We both know that we will suffer the rest of our lives save some miracle of science.  We both have tried to make the best of a bad situation trying to tell our stories and help others along the way.  You could say that we may have lost everything but have gained a life richer than any man could ask for as far as having your soul filled with the presence of God through each person that we help or listen to along the way.  We both pray for an end to our suffering each day, but also for God's will to be done.  Sometimes I selfishly ask for an end to my suffering and ask that be God's will, I can't speak for Edsel but with the pain he suffers I am sure that he wants to be free of that as much as I do.
So, years ago, a kinship was reborn.  A kinship of love, kindness and a mutual respect that we never could have attained through the work we did before.  Not a respect like this.  You do have a choice in suffering. You can give up and take the coward's way out, which by the way, takes more than a coward to do even though it is thought to be an easy way out.  Your other choice is the unthinkable, not only live with the pain, accept the pain, but turn that suffering into a doorway to others.  It is a doorway sometimes, other times it is a giant gate where you are flooded by and overwhelmed by the amount of suffering in this world.
So where once we were laying in green pastures and enjoying the fruits of having a good life, we now look forward to the sweet hay, that which most would look upon as inedible and would move forward to greener pastures, we don't have that luxury and choose to not only eat the hay, but be thankful for that which is given unto us.  We are thankful for the daily breath of life, no matter how painful, no matter how filling to the soul, thankful all the same that we are being used for a greater purpose than personal gain and personal achievement.  
No, it is not an easy path, but we are thankful for what we have in the gift of life and seeing life through others.  We don't celebrate suffering nor would we wish it upon others or even ourselves.  We would love to be free from suffering in every aspect.  But that will come in good time, we trust in that.

One Flew Over the Crow's Nest


I woke up in the middle of the night, or actually I should say the early morning around 4:11am.  I can't sleep because my new medication to try control my seizures has this nasty side effect of insomnia.  Yes, another medication to try and fix what's broken, and seemingly yet another failure.  I'm running out of things to try, things that will keep me alive.  It does give me time to sit back and reflect though instead of sleeping all of the time from exhaustion and heavy burdens.

The window is cracked just enough that I feel the cool West Virginia morning breeze.  I'm not used to that.  I'm used to Atlanta where we would still have the air conditioner on most of the night to stay comfortable.  Here, in West Virginia, the cool mountain air is a good change for this time of year and I have enjoyed it.  Through the window I also hear a familiar sound that I haven't heard in years that used to haunt me.  It is the sound of crows.

Say what you will about superstition and crows, but they do have an eerie chime to their song.  It is callous, the same tone, like someone telling you about something you already know but they keep nagging you about. The year before I became ill, I was flying back and forth from Atlanta to Seattle every week working in Redmond for Microsoft.  A small part of our larger group were assembling together for a new product, a new chapter that would ultimately define our fate.  I became close with the group, Amy, April, Mark and Rob. Yes Rob I mentioned you last just to do the whole alphabetically thing that you hated, but it is just in fun you know that.

We weren't used to working together in close quarters. We were road warriors out on the road eighty percent and higher, all the time.  And as road warriors we were always all alone and had to conquer each new week with a new challenge, a new client and another week towing a heavy line for the company.  In our new temporary roles, we had to work together to get the rest of the group ready for a new bleeding edge product that was already being tested at major companies quietly.  It was assumed to be the next big thing.  To us it was a big adjustment going from working alone to working with each other.  For weeks, we worked on our tasks each on our own, slowly but surely working closer and closer together.  At the end of our project, we were disbursed back into the field to conquer larger clients and longer weeks away from home around the world.

Every week that I was in Redmond, it rained.  Surprise right?  Rainy, misty gloomy weather in the upper north corner of the U.S.  When we would go to lunch or even if I walked outside or was close to a window, I always saw crows, heard crows and began to take notice.  My health had been trending downward for the two years previous only to keep at a faster pace that year.  I always wondered if the crows meant something was going to happen.  The rest of the group would look at me funny if I mentioned it almost as if it was as annoying as the crow's call.  Not because they didn't care about me, but because they didn't think what would happen that next year would ever happen.

On October 1, 2008, I was at a large client site and I was supposed to be doing training on this new software.  Well, without divulging sensitive details and after two very long days, I became critically ill.  The next year our department was axed from 10,000 feet without explanation.  This October will be four years of not just illness, but free falling with my health, losing all material possessions and becoming among the sick and poor in this country.

Obviously, the last paragraph could be a book in itself.  But that story is a story that may be told later, if it is purposeful enough to help others.  Right now, it is just a sad story of how fast we can fall when we lose our health in America.  When we lose our health, we lose everything, and there isn't anything that will probably change that in my lifetime.  The only hope is for a miracle or a national change of heart to where we support each other willingly in the bad times so that sickness is less of a struggle for the families involved.

I miss working, I miss my friends and my community that I have left behind.  I think about them often.  But I am trying to move forward and not dwell anymore on the things that I have lost. I am trying to live out what to do with what I am given.  And I say given because every day literally is a gift at this point.

You would think that I might stick a word in there like curse or damned because of where I stand physically and emotionally.  A few months ago, I probably would have. There is something that is changing in me that is indescribable.  It is something that I could only learn through suffering, extreme suffering.  I had to have everything stripped away from me so that I could begin to clearly see what the world is, for what it is.  And let me tell you, it is a gift.

There is so much that we take for granted in each other.  There are things that I never thought I could understand, things that have been shown to me in a way that I could not have ever imagined or dreamed up.  I have been shown the afterlife in my dreams and it is not what think we think it to be.  But if we just concentrate on the afterlife, we miss this life and what we are to do now.

There is a time and a place for the afterlife, it is when you pass on.  That time is not now, it is not something to dwell on and forget this world around you.  Trust me, I know, I've been there, I've dwelt in the if's and the unknowns.  Sometimes I fall right back into it.  You get lost very easily in a world that is ironically so tied to this world and this life that you when you get there, you will have missed the greatest part we have to play in this world.  Nothing, and I mean nothing that happens to us or passes by us is by chance.  We only have the chance to grab it before it passes us by.  

If I sit and listen to the crows counting them to think about what they mean, I miss out on the lessons I should be hearing loudly in my daily struggle.  It is a blessed struggle, if there is such a thing because I am shown things that aren't supposed to happen.  I am shown things that I never asked to see but I realize that they are the essence and the fabric of who we are. 

Winter is coming soon.  I know that we will probably have a colder winter than last year because it was so warm last winter.  Winter is when things get worse for me physically, but summer hasn't exactly been the greatest. But I have to keep in mind what is ahead of me in terms of spiritual growth and things to be thankful for.  I tend to wallow sometimes in the physical sometimes and it overtakes my spirit.  But my spirit is still there.  

I still long for the summers of my youth when I had the energy and stamina of a marathon runner.  So in my mind and in my heart, I hold the summers of my youth to get me through this long winter, this season of my life.  And I don't hear the crows any more.

In the depths of winter, I finally learned that within me there lay an invincible summer - Albert Camus

The Offering



My mind is blanketed in a fog these days.  I don't write much anymore, definitely not in blog form.  I write in my personal journal that isn't meant for eyes other than mine.  It is a journal of the bad stuff, the uncertainty, all the stuff unproven and the paranoia that flows through the pathways of my brain.

I write today because I am at a turning point.  Not a turning point up, down, sideways or what have you, but a changing point would probably be a better way of explaining it.  Most of you know by now that when I don't write that something bad is happening.  That is actually short of the truth.  Something so indescribable is happening that is has taken me months to gather the courage, the  wherewith-all, the words to explain what is going on.

Several months ago, the NIH released me from their Behcet's protocol simply on mutual agreement that there is nothing more that they can do for me.  They also have run every test in the book and can't find answers to fit me into the NeuroBehcet's diagnosis anymore.  So now we step back and find another path.  We don't start over again because we have enough information to get us in another direction, it just isn't a direction we want to go.  The NIH wants me to see a geneticist but that is where you go when you are looking to help the generations that follow you, not yourself.  There will be a time for that, a time to make sure that my children don't follow my path disease wise, but that time is not now.  I was also turned downed by the Johns Hopkins Pain Clinic because they don't believe they can help me.  This makes a long list of facilities that have closed their door to try and help.  Probably for the best anyway at this point in my life.  I have been concentrating for too long on what ailes me, not what I have to live for.

I am caught between a place that is quite simply tearing my soul apart.  My mind and my gut know what is happening and what is going to happen.  My heart will not accept anything but survival and being there for my wife and my children.  It honestly will take the stopping of my heart for that to change.  Certain truths have been exposed over the past months of how I have evidence of a neurodegenerative disease.  Which one really doesn't matter.  They are all bad, they are all too short on the prognosis end and most of all my heart won't allow me to accept these simple truths.  Even if the doctors come back from testing from the past week and give me simple, hard evidence that the angel of death is coming soon, his name is Bob, he has a calm disposition and is ready for you, my heart will not accept it.  If they come back with nothing new, my mind and my gut know what the inevitable is and it is coming faster and faster.  It is a constant tug of war.

I feel like George Clooney in that movie "The Descendants" when people come and talk to me about my current condition.  In the movie, friends and family would tell George how strong his catatonic wife was and that she would pull through this.  After all, she was strong in life and that meant that she would be strong in fighting death.  George would just nod his head and stare off to the side.  He had already been told by the doctors that his wife was brain dead and would be taken off the respirator per her living will.  She was going to die it was just a matter of time.  He waited some time before he let everyone know the truth.  Not because he didn't believe it, he just needed time to pull himself together.  Don't pull out your jump to conclusions mat yet, I am not about to die, just new types of suffering beyond comprehension and new diagnosis' of more disorders and the tragically unexplainable.

So I have been pulling myself together, falling apart a little, and pulling myself together a little bit more.  No one has told me that death is imminent or that I have a "for certain" amount of time.  One doctor has been brave enough to change my perspective on things and this has me trying to pull myself together enough to continue on my journey, my purpose have you and start putting this diagnosis and treatment stuff on the back burner.  No, I am not giving up.  I will never, ever give up no matter how bleak, stark or dark the situation.  My heart just wasn't made that way.  I am no hero looking for accolades for fighting the good fight and not giving up.  I am a father, a husband, a friend and a welcoming stranger trying to make a lasting difference.  Sometimes a difference that to me is so very small that it doesn't seem worth the effort.  That is, until I get an email, a kind word or just a smile from someone that was touched by whatever it was that I did.  It is that human interaction that we all crave that you absolutely become almost a zombie for.  We walk around with outstretched arms wanting love and compassion while at the same time we scare the crap out of those around us.

So, I take a moment to put my arms down and act human.  That sounds funny even as I type it.  Act human.  It is an act sometimes.  Most days I feel like a caterpillar that can't make a cocoon and thus transform into what he wants, what he thinks he needs to be.  I feel alien, like this thing that lays in bed all day that shakes like one of those old hotel beds that you used to put quarters in.  It really didn't feel good but you did it because it was something different, a novelty.  My kids come by and they love on me and remind me of my craving for humanity, touch and why I want to be on this earth.  Just as quickly they are dashing down the stairs and they are running outside to play with their friends.  When they were younger, I would make them leave my side to go play.  They were over responsible for my happiness and wouldn't leave my side.  I wanted them to have as much of a normal childhood as possible.  And they do, somehow.  These amazing kids possess the strength and the grace to love something that scares other kids.  Not only love but fully embrace something that probably scares them a little too.  Most nights the kids want to sleep with me but I have to sleep by myself.  My seizures at night can be pretty violent and I can't sleep if they are in the bed.  I still try to protect them even when I can barely keep my eyes open.  But it only takes a few of the quick violent jerks to remind me that I have to get them into bed with their mother so that I don't accidentally flail and hit them when I go into a seizure.  I'm not sure how many i'm having at this point even with the heavy meds, but I know just by how sore I feel in the morning how bad the night before was.  Those things are scary but at least I'm unconscious when they occur.  My wife and an EEG are the only witnesses to their existence.  Oh and of course my four year old who woke me up one morning and asked, "Dad, why are you shaking?".  I told her because that's what daddy's do sometime.  She's satisfied with simple answers, add a fraction more and the "why" starts coming out.  I don't even have an adult answer for that one.

Last Saturday when I was coming back from Atlanta from neuro testing, I experienced something that scared me more than anything has ever before.  The only way that I can describe it was like a waking seizure with severe tremors in between.  I know that you can't have a seizure of that magnitude and maintain consciousness, but that is what it was like.  The doctor at the hospital had never seen anything like it, neither had the EMT's.  We were all baffled.  Even in my best physical shape there was no way I could have even faked something like that.  My wrists had turned in so violently that they were bruised down my forearms, and I don't bruise easily.  So could it just be me breaking down, completely, mentally?  Which is what goes through your head and the doctor's when something like that happens that can't be explained.  My neuro back home quickly said that it was a severe movement disorder but did not elaborate as to which one.  If you google these things it scares you because you see early onset Parkinsonism and Huntington's chorea.  Keep googling and you just get confused and scared.  So I turn to YouTube, the "visual scare the crap out of you service" from Google, and well I can't find anything that exactly matches what happened to me.  I would have to combine the two worse things I saw and be conscious to imitate it. So I digress and hope that it doesn't happen again.  But it will, as everything else in this tearing down and rebuilding process.  The monster wouldn't be complete without a few more freak show attractions.  It turned out to be what are called pseudo-seizures that were so violent and lasted so long that it put me into status epilepticus.  This is a very dangerous place and luckily the hospital wasn't too far away for the EMT's to give me a shot of "calming medicine" to stop convulsing violently, calmly and then sit and wait.  Fortunately the first round worked but left me scared to death of the future.  For the first time, I am truly scared that my heart and my will may lose this one.

I would let it go as a one time thing if it wasn't how heavy these types of disorder's run in my genes and my bloodline.  Parkinson's is pretty much a given at some point in my life because of how many people have it in my family.  If it isn't something I was born with, it is something possibly acquired.  I grew up in a mill town where these flakes would fall from the sky every time the mill would blow out the pipes.  We called it "southern snow".  But from the rates of cancer and so many terrible diseases in my hometown, I think the snow was more like acid.  We should have known better but at the time and even to this day the mill feeds the town and you don't bite the hand that feeds you even if you are fed a little arsenic here and there.  If it wasn't that, there was growing up near the family farm.  Cow's have nasty diseases they can pass on and so can all the crop-dusting that was done in the early 70's.  DDT was used early on not only to kill Vietnamese but also pesky crop insects.  We should have known better but again, the whole hand that feeds you thing.

So I have been exposed to so many things in my lifetime and generations before me that I am almost assured to be neurologically damned at this point.  The label doesn't matter, because the treatments are all the same and there is no cure.  How fast you die is a combination of how well you can avoid stress from here until then and God's timing.  Avoiding stress when you have no money, owe a fortune in medical debt and are trying to maintain a responsible existence is impossible.  So you have bad days, you have days where you eat out when you should have eaten a sandwich at home and you get little things here and there just to remind yourself that you are human and not trapped inside this relentless storm.  Our biggest stressor is financial, but if you gave me a million dollars, I would pay off bills and then travel around helping others with the rest.  So you would end up having to give me more later if I survived.  

Money doesn't mean anything to me anymore and I'm sad that I spent so many of my years chasing it and that stupid, selfish "American Dream".  It took this drastic of a turn in my life to change my instinct to provide for my family, have our own big house and be self-sufficient and seen as successful.  I'm pretty stubborn.  God knew that he had to take both my mind and my body away so that I could fully see what is wrong with the path we all are on.  If given even an inch, I would have found a way to make money for my family and survive.  As is, I cannot and I have had to completely let it go.  So if you send money, it will go to pay off debt but also to help others.  I have neither the need nor the time to hoard cash.  For me it is obvious, for everyone else, you may not see it until it is too late.  

So let my suffering be an example that the best thing to do is to give and help others until you have nothing left but what you need to live on.  It is only then that you will see what it is you worship the most.  For me it was money.  I chased it, coveted it, made it, gave a little and then had every last cent taken from me.  I was a good steward by today's standards but not by what I know now.  For those in which much is entrusted, you must pass that on to help others.  Not because they deserve it, not because you have to but because that is what is needed for humanity to survive.  Giving and helping one another completely and selflessly is the fabric that holds us all together.  It is the essence of God in which we need look no further than the person next to you to see.  

I now understand the parable that Jesus taught about a rich man getting into heaven.  He said it was easier for a camel to pass through the eye of a needle than for the rich man to get into heaven.  I always thought that it was because the camel was too big and had too much so he needed to give everything away in order to "fit" through the eye of the needle.  That wasn't it at all.  Jesus plainly meant that his focus was on making money and his wealth and not on helping and serving others and finding the true meaning of who God is.  It has nothing to do with the size of the camel or the size of the eye of the needle.  It has everything to do with who is your God.  If money is the focus of your life, then that is your God.  It doesn't take a rich man to be that.  If being of service to others and doing whatever you can to help others is your focus, then it doesn't matter how much you have, you are the fabric that is needed to mend this universe if only for that space in time.  You are the fabric that helps sew the universe back together where it is torn.  The needle is not a measure of your means, but a measure of your willingness and commitment to help others.  I have found this wisdom in that process, and in that process I keep finding who and what God really is.  In any other pursuit, you will find emptiness.  Some people can't be wealthy and keep that focus.  I know that I am one of those people.  God graciously took everything from me so that I could see this and so that I could share this with others without them having to go through the suffering to learn this.  You can do this gradually, just do it wisely.  Like my friend Amy says when I get on her about being too generous to us, she says "we can always make more silly!".  That is someone that gets it.  Her and her husband not only give to others but they get involved in people's lives and love people like family.  While their donations of money are wonderful, I remember their love and their time spent listening and caring the most.  I wouldn't trade their kindness to others and to us for a cure.  That is how much of an impact they have on me and now this world.

And now I end on this final note.  In the recent weeks, I have been diagnosed and begun treatment for Myoclonic Epilepsy.  I also have been diagnosed with an unknown movement disorder.  Both of these mean that my brain is being substantially affected by whatever is going on.  If it isn't violent seizures at night, it is sitting around with rhythmic tremors while resting.  Parkinson's runs heavily in my family and I carry the gene for it.  It would be quite early for that to be diagnosed (which is not the case yet) but it would make some sense.  The Epilepsy makes no sense and the medication I have been taking isn't stopping the seizures.  This is a bit worrisome because of the huge unknowns when dealing with seizures of unknown cause especially when they are progressing at a frightening rate.  All that I can do is try my best to control stress, keep my mind off of what is going on, get plenty of rest and start doing the things that I have wanted to do before it gets possibly too late.

It may turn out that I have many years left or it may not.  The important thing now is not concentrating and worrying about what tomorrow may bring, it is important for me to get busy trying to do the good things that I have tabled for so long while chasing answers to my spiraling health crisis, and prior to that chasing my American dream.  It is my nature to want to know what is going on and to want to know if we are missing something treatable.  But this too has to be broken and surrendered.  None of us know how much time we have left in this world.  When you are sick and suffering, it is ever-present in your mind.  When things are going well, it is the furtherest thing from your mind.  So take this from me today if you don't take away anything else; start now with what good things you want to do before you die.  Don't make it a check list for later, start now.  Start slowly or go all-in but just start.  Your perspective of the world will change drastically when your focus is no longer on money, retirement, the dream of success or living the easy life.  Your eyes will open to the suffering all around you and you will have to make a choice, a very hard choice.  Are you in, or are you waiting this round out.

Secrets Rot the Soul

Some of the little things that I keep inside actually aren't all deep dark bad things.  I do find simple joys in life that I otherwise would glaze over in a normal life.  I usually wake up between 4 and 6am in just terrible pain because my meds have worn off and sleep can't hide the grumbling monster.  After I take my meds, I usually lay down and listen to music.  My favorites to listen to in the early morning these days are Gotye, Young the Giant and Scars on 45.  Of course that mixed in with some of my favorites from Sara Bareilles, Mumford and Sons, The Civil Wars and slide in Damien Rice, Coldplay and many others make for my morning soundtrack.


I always look outside at the horizon every morning to see what life on the outside seems to be brewing, because my daughter Reese always asks me what the weather is going to be.  I like to be able to tell her what I think and that I'm connecting to her in every way possible.  I lay back down and wait for the meds to ease their way through my veins and help pat down the grumbling monster.  I watch the sunlight creep in across the ceiling and think about life here, past to future.  Good thoughts.  Usually about good memories or things that i want to do.  Occasionally things creep in that make me sad but the music playing usually wisps away those things if I just give in to the melody and words.  Music is good for the soul.


It would be nice to just be able to listen to music and always feel the way I feel at this moment in the morning.  I feel stillness, content and don't think about painful things that eat away at my soul.  Things like where life is going, loneliness, suffering (not just mine), and things buried deep inside that I'm too afraid to talk about or I haven't processed enough to put into words.  These feelings and thoughts can only last so long.  The longer you keep them inside they become little secrets that you hold against yourself and others.  This isn't fair to you or the people in your life that have no idea what you are holding inside away from them and sometimes against them.  Kept inside long enough, these little secrets will begin to rot your soul and turn into anger, resentment and take away from the beautiful person that you can be.


Of course, letting out these little secrets isn't easy and is usually painful.  And who wants to add pain or conflict to their lives.  So we have to find safe times, safe people to ease these things out.  It isn't fair to those we love to hold things in until they explode out in a noxious fashion.  But as this all sounds good and easy, the later usually happens and causes pain, discomfort and discord.  You feel somewhat relieved to release things but then feel awful for the way it was delivered.  This makes you less likely to want to do that again, and then you do again because you follow the same pattern.


I am learning still how to do this.  Man do I screw this one up, but I am working on it.  Working on easing things out as they come without overwhelming the trusted ears that still listen.  I do appreciate those people so much in my life.  They help keep me sane, keep me mentally sane and self-sustainable.  These people also help save the relationships that I do have or help me move on to a safer place that I can be protected from things coming in the other direction too fast for me to handle.


Everyone have a good weekend and love the little things, the big things and all the people in your life that keep you who you truly are.


#BeStrongTakeHeart


Andy

The Awakening - The End is Fear



We all live with certain fears.  Some are more willing to conquer them head-on by doing and living what they fear most.  Most are phobic about anything that challenges the fears living inside them, the fears floating around their heads.  I, myself cannot say that I am fearless.  I have certain fears that I will probably die with and I have certain fears that I fight every day.  
When it comes to fear there is no logic.  It either changes who you are or it doesn't make you blink.  It all depends on whether or not you have let fear become a part of you, how deep that fear goes and if you see that living with fear, any fear, takes a certain part away from who you could be and sometimes goes so far as to define you.
I don't fear death or suffering.  I do fear not knowing when painful things will end.  I give hope to things that don't hold any promise of redemption.  Sometimes I fear how I have let my disease, my condition, my situation define me.  I have let down myself and those that care about me not because I haven't tried to fight, or to find answers, or to get better.  I have failed because I allowed my own fear of living life without answers.  I have been living life with a possibly naive hope that things always get better and I will get better one day and return to "real" life again.
Well, it has been four years now of spiraling health, dwindling hope and casting nets on all sides of the boat.  But the reality of what has been defining me and what has suffered because of me has set in.  It was something I never thought to fear.  It caught me off guard because I always knew that I would somehow pull through this and be a great inspiration to all and I would change my own definition one day from this poor suffering soul to someone that is strong and fought through it all.  So my fear of being defined by what ails me has brought about an awakening.
For the past several months, my eyes have opened to who I am and who the people in my life really are.  While I have been fighting this battle from my bed, the world was moving on without me whether I accepted it or not.  I saw the red flags, the warning signs for years yet I chose to ignore them.  I feel betrayed by doctors that I gave my complete trust to.  I feel abandoned by those that didn't know how to stay with this thing, this person as defined by what I am going through, not who I truly am.  I accept the blame and at the same time realize that it isn't all my fault as well, but I now must move forward and accept a greater challenge.  Now, I must live without fear of asking for help.  
I must live without fear of protecting myself from those that choose to hurt me while they are my lifeline as well.  I have to give space to allow this thing I have become, to disappear, to fall apart and be the person hiding behind the curtain.  I have been this person hiding behind suffering and behind the plight of getting better at all costs.  In the process, I have lost who I am and I have lost those near to my heart.
A few weeks ago, a good friend of mine from college who now runs a hospice was kind enough to speak to me for a few hours.  In a short amount of time, she called me out.  Not chastising me but calling out the Andy of yesteryear.  It was almost as if she had this power to bring the dead back to life making me realize that in my words and in talking with others that Andy was still in there trying to get out.  You know the Andy that was always full of life, the romantic, the guy that people just knew was something/someone different.  For many years now that Andy has been suffering greater than any disease or abuse that I literally have been going through.  
The suppression of one's innermost being, their soul, the person that they truly are is the most painful state one can ever be in.  It took many years and an unbelievable amount of suffering and self-loathing to cover this person over.  Many people have never met the true Andy over the past several years, only pieces and parts here and there.  That probably has been the only thing keeping people around, you know, curiosity of what lays beneath the cover of my skin.  People have seen my bones and my will, but not my soul and my spirit.  Time to face that fear.  I see now that sitting in fear is the end because you become frozen and don't move in any direction.  In effect, fear can be an end.
I am about to go on a journey of self-rediscovery from place to place, friend to friend and revive what has been gone for so long.  I know that it will be painful because unfortunately deciding to do this isn't going to make me better.  It may in fact make my health worse.  But with no definitive prognosis to guide me and no promise of tomorrow, no promise of healing, and no promise of what is coming next, I will not sit any longer.  Of course, this would be easier if the above prognosis and treatment plan were definitive, but I am going with what I have, not with what has been hovering a mile over my head since the beginning.
I have already talked with some of you about what is coming.  I appreciate the offers of places to stay and help getting there and palliative help/care when I am visiting.  I am in no way abandoning my family.  If I could, I would bring them with me in my trips but I can't do that until at least summer because I don't want to break what little normalcy that they have.  Who knows how long the journey will last.  I hope it lasts a lifetime however long that time for me is given.  If you want to be a part of this journey let me know so that we can possibly arrange it.  I can't promise that I will be fully Andy, but I can promise that I am tackling so many fears right now that you may be visited by three or four Andy's.  The good thing is you will like the real one, the one you liked in the first place.
I have updated our needs page at andybarwick.com/needs so that you can see all the things going on in that area.  I am also going to be working with Keith Roberts on a documentary that we will send out more detailed information on in the coming weeks.  It will be through a site called kickstarter.com to be funded and should be something that is quite amazing.  Keith Roberts is the filmmaker and director that did a few of the short films you see on my site.  His talent is raw, passionate and we have had high interest in the project for a long time from people that are friends all the way to famous directors in New York.  Anyway, with the documentary many of you will become a part of it.  That's right, you on the big screen!  The more money that is raised through the project coming up will mean the more in depth the story will be able to go and the faster that we can get it filmed, cut, edited, perfected and molded into a masterpiece.  I am just humbled and excited to be a part of it.  It's about real life so I won't be a paid actor or anything but the message of the movie will be powerful, life-changing and will hopefully bring awareness and change to the hearts and lives of many.
In the meantime, just know that I love and appreciate all of you that have supported us financially, prayerfully and in friendship and trust.  Whether this be my parting piece or whether it becomes the first of many to come over the years I just want everyone to know how much you mean to me and my family.  I know times are tough and I don't want people to give what they cannot.  Please just do what your heart leads you to do even if that is friendship.  That is one thing that I need so much more of everyday.  That and someone to support my love of gadgets that I have been a good boy and kept away from...for now.  
Much love - Andy

Things Left Unsaid



I have been very bad at writing lately and keeping everyone up to speed on my life.  There are excuses, reasons and many other things that could give me a pass on all of this but there are too many people that have given their hearts, their time and their commitments to stick with me through this process, whatever it may end up being.

I will start by saying that I have been holding out on many of you about my true condition.  Generally, when I write, I don't like to talk about what hurts or give bad news or if there is some bad news.  I like to somehow turn my experience into a life lesson or a learning perspective. I won't gloss over with you with what's going on now.   I just don't have the energy or a good perspective.  Maybe by the end of this writing that will change.  I also want to apologize for my writing if it is incoherent or broken in parts.  I have been having problems with memory and concentration.  At times, my brain feels like Swiss cheese.  But to give an inside joke to those that suffer from “invisible illnesses”, I look good on the outside.

My health has been doing a tight spiral since our December 7th house fire.  It was going downhill somewhat after the death of my friends Scott and Cindy, and it started getting worse after the death of my dear old dad. I didn't think that it would take such a toll on me but it did.

In the two years before Cindy Semple passed away from metastatic breast cancer, we talked often via email, Facebook or phone about how our lives were going and we would give each other the "real" story. It often was tearful, insightful, depressing, uplifting...the whole gamut. But the one thing that I could count on with Cindy was her belief that no matter what, God was good and she was going to beat this cancer thing.  She was also going to live life to the fullest.  I feel a great emptiness just talking about this because she was such a strong, unique person.  She had been fighting illness since she was just a baby and she never stopped until her last breath.

In September 2011, Cindy wanted to come and see me in New York during my spine surgery to give moral support and to meet my wife Mary in person. Mary had grown quite fond of Cindy over the years but how in the world couldn't you. She was amazing in every sense of the word. Cindy and I could share experiences that only someone that went through that type of pain and uncertainty could understand and give comfort.  Just as friends that talk with Mary that support a sick spouse or child can only identify with her.

Towards the last year of her life, I pushed Cindy to get out and do the things that she always wanted to do.  I told her to tell people want she wanted to do and God would find a way for her to get there.  Cindy took a trip to Israel that a friend of hers graciously paid for her to go. The thing that I gave to Cindy was the permission that she needed to ask for things that she needed and not go at it all alone. God puts people around us that can help us in so many ways and when Cindy allowed herself to be "taken care of" she was able to do things she wouldn't have been able to do before she died.  Cindy always gave me that extra pep talk to keep fighting.  Not the kind that you roll your eyes at from someone that doesn’t know your pain, but something from someone that has earned your respect, hands down.

Because of her trip to Israel, Cindy had to stop her current treatment to be well enough to travel. Her doctor realized that Cindy was in the final six month run of her life and it was better for her to die enjoying life instead of working and fighting to live her normal life. Because of her travel, she couldn't come and see me because of course she had to start back on the treatments upon her return.  I was sad but I could definitely understand.  In some of our last conversations, I told Cindy that you know that this is the last stand. I felt it in my heart and she felt it too but was just too strong to admit it. What I wanted to get through to her was not to quit fighting, but to accept where you are and leave your mark on life. Leave behind that wonderful legacy that was and still is Cindy Semple. We cried a lot that day just tears of happiness, sadness, grief and just accepting that we could not control our health and our time here on earth, but we could control what we did with our time.  I remember when Cindy passed away, I looked up toward my bedroom ceiling and said, “I’ll see you soon Cindy”.  I don’t know where that came from.  After all, I wasn’t riddled with tumors or given a definitive timeline on my life, but at that moment I think that my soul missed her so much that I wanted to join her and no longer be in pain.  There is so much confusion surrounding my prognosis and even my entire diagnosis that no doctor can put a timeline or treatment plan together.  I am an enigma in many ways.  But I am going to continue on with Cindy’s fight for life.  I believe she passed that spirit on to me as well as to many others so that we could pass it on when it is our time.

On the night before my spine surgery, I was very nervous about what was about to happen. This was a very serious surgery that could leave me dead, more disabled that I was, or by some miracle make my life better. That night Cindy texted me and this was our last back and forth (August 30th early am):

(Cindy): Thinkn about you!!!

(Cindy): R u ready?? God is!! He is gonna take care of ALL of you!!!!!!

(Andy): Ready as ever!

(Cindy): Just imagine all the people u love so much standing around u rt now
holding hands & praying. Father, please take care of my brother today and make
this journey successful so that he can walk his sweet little girls down the aisle
some day. In Jesus name I pray...AMEN!!!!!!

(Andy): Thank you so much!! It really means a lot in these final hours
before the "new me". Psalm 73:26-My health may fail, and my spirit may grow
weak, but God remains the strength of my heart; He is mine forever.

(Andy): I borrowed your quote Cindy. I'm getting pinging left and right like a
virtual pray over!

(Cindy): That makes me smile BIG as i sit in a hospital bed wishing i could be
there. U have lots of people who love u & God tells them when it is time that
they r to let u know that :)

(Andy): I'm with you tonight Cindy as well. You never part from my mind or
heart. I saw a woman get hit by a cab earlier in the afternoon. The New Yorkers
formed a human shield around her to stop traffic from coming through. I made
my way through the crowd and comforted her even as she laid there bleeding
and I could feel her spirit wrestling inside her trying to get away. I simply stayed
with her a said a quite prayer while keeping her still. I knew somehow these were
her final hours here on earth. She was bleeding from her head and I could see
that her pelvis was shattered. Somehow I found peace in that moment of sorrow.
Peace be with you Cindy, peace be with you.

August 30th, 2011, 1:42am, that was our last conversation.

After my surgery, my life was definitely groggy and in a fog. I learned that my friend Scott Stanich had died and I couldn't go to his funeral because I still couldn't walk not to mention I was still hooked up to all the stuff in the hospital. I was still hallucinating from the powerful pain medications I was given from cutting an eighteen inch gash through the nerves all around and down my spine, tugging and pulling it straight and putting in metal rods, screws and bolts. I was in a pain that I can only describe as screaming because that was all that I could do when I was awake and had to move an inch.  But I was alive!  I had made it through the impossible to see my Mary and I couldn’t wait to see my kids.  It would be another few weeks before I could see my kids because I had to learn to walk again and I also caught a nasty infection during the surgery that let’s just say made life much tougher and more humiliating.

When I was through with my hospice recovery at home, I tried calling Cindy but I was only able to leave her a voicemail. It turned out to be the last Friday night before that Sunday when she passed away. I felt something was going on in my spirit and I wanted to check on her. I knew she wasn't doing well since well before my surgery and I wanted to catch up and try to pass encouragement back to her.  I wasn't able to speak to her again but I know that she got my message.  I could tell in the last picture that I saw of her with our friends Beth and Jeff that Cindy was at peace and knew that it was time.  What a gift to all of us and not just to me.  I need her spirit now.

And that was it. Cindy was my constant person that got it, got the pain, got the daily struggle and she was gone.  I didn't really have time to grieve for her because my dad died the very next week.  I felt emotionally numb for a while although I did have wonderful dreams of my father for a few weeks. I knew both of them were no longer in pain and getting to know each other, laughing at how great being a free spirit is, no longer bound to this earth and all the pain that they suffered through was forgotten.

After our house burned down on December 7th, 2011, I felt my downward sloping health begin to turn into a tight spiral going straight down. The stress was really getting to me and making me angry at everything. Yes, I had officially arrived at the full on "anger" stage. It will rip your life apart in seconds if you don't have a patient, loving spouse and some coping mechanisms in place. I am still in this "anger" stage but I know that one day this too shall pass.

I haven't been feeling well for a while now and have been bedridden since the house fire. But it doesn't stop there and this is where I usually cut it off and don't talk about things like this but I feel compelled to share it with you because you deserve to know. My current doctor believes that I am beginning to show signs of Multiple Sclerosis. Now I have read that MS and NeuroBehcet's can't occupy the same body so if it is MS not just the NeuroBehcet's turning nastier, it would most likely be primary MS. But this is just speculation right now because I don't have the cash to get MRI's, bone scans and all the work-up I need right now because I don't have insurance.  Blue Cross Blue Shield threw me on the street October 31st with no carryover plan and they are now trying to weasel out of the spine surgery payment which has crossed over $250,000 now. We have maxed out everything we have so there are no reserves left. So I guess, I will have to get worse before I can get better. Exceptions are made for the dying but not for those that can still walk into the emergency room.

I have been bleeding internally for over a month now and I am officially anemic.  Being anemic is a big deal for me, because my body is notorious for always overproducing blood cells (polycythemia).  So this means I am losing blood at a pretty good rate. The doctors want me to do an EGD and Colonoscopy to find the cause but of course I don't have the cash so that isn't happening. Maybe I should start eating cork with hopes to plug whatever GI lesion or tear that I have. This happened to me several years ago but disappeared by the time the scoping was set up.  That is the beauty of autoimmune diseases.  They come like a thief in a night and destroy you from the inside out.  If doctors are fortunate enough to find the evidence left behind before it is washed away or put on the backburner for another pressing issue you are one of the fortunate ones.  Treating the unseen is another story all together.

Hopefully this will disappear as well. Yes, I still suffer systemic pain in my bones, joints and muscles every single day. I haven't had a day where I have had pain less than 5 out of 10 since September 2011.  I haven't been completely out of pain since September 2008.  I do have a small hope that the NIH will permit me to come in soon for more testing but that is slim.  Their funding was cut in 2010 by our wonderful Congress. No cuts for big oil or big money tax loopholes but an agency that helps the human condition, nah cut that stuff because we are all well and our system of pharma research and subsidized private research will be enough.
(Insert rant) We are definitely living shorter and dying longer.  And if we all do nothing then it will continue down this path.  Our country will spend 1.7 trillion on the fly to protect oil shipping lanes but will squabble over the scraps given to our human condition.  Expecting to be cared for isn't entitlement, it is a basic human right that every person should be allowed affordable, complete healthcare or healthcare to protect them if they have nothing. Our current system takes everything you have away from you until you have nothing and still falls short of getting you what is needed to get you better.

A healthy population is a working population. Without your health, you have nothing. It makes sense to keep people healthy to keep our economy and our overall well-being healthy.  If only FDR had not died before he implemented his extension of healthcare as a basic human right for all Americans.  America did however help build the infrastructure of Europe’s healthcare system.  Europe decided after World War II that the most important thing to provide was healthcare for everyone.  A healthy society is a productive society in more ways than just a capitalistic standpoint.  For those that still don’t get what I am saying about providing healthcare for all Americans, think of it like this, for every dollar you cut from the NIH, Medicare, Medicaid and refusing to implement a better more proactive system to keep people healthy and living healthy lives, you are making a conscious decision to allow people to die.  I don’t how to say it any plainer.  You reverse the progress with Obamacare, millions of children instantly will be thrown to the streets without insurance.  Children with a future, they just need a chance to get past the cancer, the birth defect or the abuse that has been handed to them without their fault.  You issue a death sentence to millions of children.  You then reverse the progress being made that in 2014 all adult Americans will not be in my position and without insurance because of pre-existing conditions getting you kicked out after anything major happening.
Now things aren’t perfect, the proposed healthcare plan isn’t perfect, but don’t go backwards on good things.  Make the changes to things to make them work better.  And I’ll digress.

Best to everyone, I'll try to get back to writing less depressing stuff if everyone can talk with God for me and ask for at least a break from this for a while if not forever. #MayGraceFreeYouForever - Andy

Perspective - A Reflection of Reason



I get many comments from friends and fellow various illness sufferers from around the world that often my writing gives them perspective into their own lives and helps them see things in a better light.  That is a very nice and humbling comment when I consider most of my writing as an outlet for me.  This year has been a tough year for our family and many others.  There have been many times that I have searched through what seemed a swamp of suffering only to turn out to be an ocean of learning, growing and my old friend perspective.

If I go through all the things that happened this year it sounds like an old country song:
  1. We had to move in with my wife’s parent’s house because disability didn’t cover our expenses.
  2. Since I moved from Atlanta my treatments have discontinued because the doctors have no other alternatives to help my pain. This includes the NIH (National Institutes of Health for Rare and Undiagnosed Diseases).
  3. Several people have approached me and my wife and accused me of being an opiate addict and not really in pain (which I have served tirelessly to ensure is not the case).  I have gone way beyond what doctors have suggested in pain medication prescribed to the point that I suffer more because of a significant voluntary opiate treatment reduction in exchange for preserving long-term options for pain treatment if things get worse.  I hope to find a way to go to the Cleveland Pain Clinic in 2012 or Johns Hopkins for better and less dangerous options.
  4. We had to sell our only car that had over 210,000 miles on it because we could no longer afford to pay for repairs.  We have to borrow cars to go places and there is no bus system here.
  5. I had life saving scoliosis operation that was one of the most painful and testing times in my life.
  6. I went through a long rehabilitation process learning how to walk and do basic things after the surgery.
  7. My good friend Scott died from complications of Diabetes, he was my age.  He died while I was in the hospital in New York and I couldn’t see his family.
  8. My father died after a long battle with Diabetes.  He suffered for a long time and his battle was so hard especially there at the end.
  9. Cindy, one of my good friends and someone that has helped me so much through this process, died from breast cancer.  She was my age.  I couldn’t go to her funeral because I was at my dying father’s bedside.
  10. I lost my Blue Cross Blue Shield Health insurance because of a technicality bringing back in my pre-existing conditions.  I have to pay out of pocket for all medications and doctor visits until July 2012 when hopefully Medicare Part B will kick in.  We have received over $100k of bills from my scoliosis surgery that BCBS has yet to pay.
  11. Our house caught on fire last week and we had to move out.  There was an early morning electrical fire in the house that burnt out a god bit of the upstairs where we stay in the house.  It will take four to six months to fix so that we can move back in.
  12. The same day that our house caught fire Mary and I started marriage counseling.  Life has been tough for both of us and we are trying to save our marriage.  Statistically over 75% of marriages that have chronic illness involved end in divorce.  I can understand why in when you look at the damage that illness does to a relationship.
  13. We have accumulated more than a mountain of debt from medical bills and life expenses.  In November of 2010, we were debt free for a short moment.  That moment didn’t last very long.
  14. And you can’t finish off a country song without the famous, “My dog died” line.  Well my buddy of many years, Indiana (Indy), died from cancer.  He saved me the first time I was ill thirteen years ago.  Unfortunately there was nothing I could do for him.

There are literally hundreds of other small things that have happened that have really made this a hard year.  So there is your swamp.  I can wallow in it or find perspective in all of the situations.  I can be a victim of an unfair dose of bad things happening to me and sit on that, or I can move on with a fresh mind ready for the next thing good or bad.

I have to be honest, at times during this year, I wasn’t always “Mr. Perspective”.  I have suffered a lot of depression and many days worrying about tomorrow.  There is no special formula or exercise that I go through to get through all this so I could never write a book on how to deal with misfortune.  But what I can do is tell you that somehow, God has always reminded me of his grace in every instance good or bad.  That is probably why I have “May Grace Free You Forever” tattooed on my forearm.  That is probably why Mary and Joe Mayernik created a logo for my site (and later my cause) called “Be Strong.  Take Heart.”

I have written about many of the things that have happened this year so I will just give you my take on what is going on now.  The latest tragedy of our house burning is one that is very surreal and it has given me probably the most perspective of any event this year.  Last Wednesday morning, Mary came in to the room just before 6:00am and told me we need to get out of the house, there is a fire.  She showed me the bathroom ceiling where she thought there was fire.  The ceiling was bubbling and it was like an oven in there.  We both immediately were getting everyone of the house.  She had already gotten everybody up so it was a quick dash for the most important things and out the door we went.

By the time we were out of the house the fire department was at our door.  They are right down the street from us so that helped quite a bit.  Mary had the kids in one of the cars to keep them warm because it was freezing cold and raining outside.  I stood outside the car and helped her back up around the fire engine to a spot across the street.  I still remember the moment like a slow motion sequence.  I looked at the house and there was a jet of flames coming from the side of the roof already blue and roaring.  I panned my head back over to the car and the kids were in the backseat crying.  They were scared because everything they knew was changing again and changing drastically before their eyes.  Their eyes echoed my heart but I tried to remain calm and steadfast to help them.

All of the sudden everything sped up.  The neighbors across the street were ushering us in their homes to be warm and get comfortable.  A father of both Reese and Lakin’s friends whooshed over to take them to their home where they could be with their friends and away from the chaos.  They were instantly much happier.  People kept bringing over little things like coffee and offering help as much as they could.  I stared outside the window watching the world wake up and our house burn down.  It was so surreal.  I couldn’t stop thinking about how Mary gets up every morning and goes to work out. This one morning she took pause with a weird smell in the house and investigated it.  If she wouldn’t have, I can tell you for sure that the girls and me would be dead.  Perspective started.

Fortunately we have insurance and that should help pay for most of what we are going through.  Sure we lost some stuff, but it is just stuff.  We have lost stuff before like our home and our car.  My first instinct used to be how am I going to take care of my family and how am I going to raise money for this one.  But that wasn’t my reaction this time.  I had a certain peace about what was going on.  After one hell of a year, my house was on fire, this should have been a tipping point pushing me over the edge.  But for some reason it pushed me back the other way.  I’m not saying that I wasn’t stressed about certain things, I was, but something changed in the way that I viewed the world.  All of the sudden, it wasn’t about me.  Perspective continued.

I didn’t care if people gave us money to help out.  I thought about all the other people that go through this and don’t have good insurance.  They lose stuff but they don’t have a safety net to keep them from being homeless.  The American Red Cross helped us out with immediate stuff.  I began to think that we don’t need help, what about all the people in Haiti that are still homeless and suffering.  What about all of the people suffering in the Congo from years of rape, theft and genocide?  Shouldn’t they come first?  But I just accepted what was for now.  We found a hotel to temporarily stay in and got the essentials for the family.  Our family was safe.  To me and Mary that is all that mattered.  For some reason, that instinct of providing monetarily for our family has turned into providing for those less fortunate even at the expense of us not having everything we need or mostly want.  Yes I have these crazy dreams about what I want in life, but in the end they just don’t mean anything while people are suffering.

Marriage counseling that day was very emotional.  It was our first session.  I have so much pent up anger, sadness and grief that it has affected our family life.  Being in bed most days is alienating me from the family and I am not giving Mary what she needs, which is to fight harder and be more present to her and the family.  We go again this week.  It is tough when you realize that there are parts of your life that you can’t control, that are invisible like my illness, but that doesn’t mean that you can’t somehow dig deeper and try to be more present with your family.  At times, I feel like they would be better off if I was in a facility that helped take of me until I got better, but I realized that I may not get better.  It may not be in anyone’s control to help me or make me better.  I am just going to have to dig deeper to be more of the person I used to be in spirit and love.  It is going to be hard, but I want it to work, I feel like we both do.  And not just for the kids, for us and the love that started this marriage, this friendship.  It will take time, but we are trying and I have a long way to go.

With everything that has been going on, an old project that I want to get off the ground has re-emerged in my thoughts.  I bought the domain name mindblind.org a while back ago with an idea of what I wanted to do with it.  It is on my andybarwick.com/projects tab.  I don’t have a physical mindblind.org website yet but it is on the list of things to do along with becoming a 501c non-profit organization.   I want mindblind.org to be a facilitator for those with invisible illnesses to get the help they need through the various organizations out there.  I want to awaken people to this epidemic that is growing of people suffering silently and unknowingly to the public eye.  There are millions that need help even if that help is just for people to know and trust that they are suffering pain and illness and not faking it or lazy.  I really have a heart for this now.  There are so many people that write to me from around the world that suffer enough from pain and disease, they shouldn’t have to suffer from people doubting what that their suffering is real and present. For those that would like to help me get this off the ground and keep it going please contact me for further details.

There is so much that I have to be thankful for ending this year 2011.  Yes, it has been a difficult one but I have survived a very tough surgery and we are surviving a tough life.  People have given me hope that humankind has not lost empathy towards others and we are not completely a society turning inwards.  In fact, I find with many people the exact opposite.  In this year of tribulation, many people have found their own perspectives on how humanity can grow and give even in a down economy.  This makes you believe that as things get better that we can keep this going to help others get back on their feet.  The ripple effect is that people helping people increases the number of people able to be productive to society, increases the number of people helping others in need and it just keeps building.  It ends or begins to decline when we lose perspective and look solely towards our wants and needs.  I’m not expecting a world of Mother Theresa act-a-likes, but I do hope for improvement.  Slow and steady. 

For those asking how they can help us, here are my suggestions; first help others in greater need.  Right now we have needs but we also have some resources like our insurance to help us back on our feet.  There are so many people that are not so lucky.  There is a single mother here in Beckley that suffered our same fire fate but did not have insurance.  People like this need our help.  If you would like to help, please contact organizations like Appalachian Community Mission and speak with Ryan Snuffer.  There are many families in need like the single mother and this mission could use your help.  They are a 501c non-profit so you can even get a tax deduction for your help.   If you can’t give financially, remember that acts of service are needed as well.  Money helps buy things but it doesn’t physically build or move things.  Acts of service are just as important.  So my hope this Christmas is that people will give more and have a few less presents under the tree for themselves.   I keep pointing back to one of my favorite songs right now which is by Sara Bareilles called “Love is Christmas”.  It is the epitome of where we are and I encourage those that enjoy the song to buy it and gift it to others.
  
Thanks to all those that have supported us this year.  I am expecting things to change in 2012 both in my illness and in what I give back to this world.  My only hope is that I don’t get stuck back in a swamp without perspective.  I have been richly rewarded with that this year with much more than perspective and I don’t want to lose sight of that.

Living Shorter and Dying Longer



Since my scoliosis surgery in August, I have lost three close friends to extended illnesses.  Scott died after a long history of complications from Type I Diabetes.  He was my age.  Cindy passed away after a lengthy battle with breast cancer.  She was my age.  And then the toughest loss, my dad, passed away after a long battle with the complications of Diabetes as well.  This has been an extremely tough year in terms of seeing suffering and death first hand.  I haven’t noticed people really living as much as I used to.  It seems that the life is somehow being drained from them.  Maybe it’s because of economic strain, world anarchy or just that things don’t seem to be going well for most of us.  It seems like we are living shorter and dying longer these days.  Suffering is growing probably because we focus too much on “sickcare” instead of “healthcare”.   But even in a perfect system, suffering will always exist.  Things will always elude human awareness and answers.

After my surgery, I felt enthusiastic about the loss of all my previous disease symptoms.  The only pain I felt was the intense pain from scoliosis surgery, but that is certainly to be expected.  After Cindy died, my dad died a few days later.  The day after my dad’s funeral, I started feeling some of my previous symptoms blink in and out kind of like a wire with a shortage.  I had felt this before but chose to ignore it and try to stay positive.  The surgeon told me that as the nerves in my back started growing back together we would know for sure if the old symptoms of central pain would return.

I hate to even talk about it but my old symptoms of systemic central pain are returning.  So along with a pretty healthy pain level still from my spine healing from surgery, the old pains, the numbness and tingling and the extreme fatigue are setting back in.  Most days my body just shuts down at some point and I fall into a deep slumber.  I lose track of time and wonder how long I have been asleep when I finally do wake.

The one thing that I do have going for me is that no doctor has proven a definitive prognosis and with my symptoms that means that I could potentially live like this a normal life span.  The thought gives me great pause as it should.  The thought of living the rest of my life in this condition is something that I have thought about before, but only as a worst case scenario.  I am trying to get more help with the NIH and any other facility t.hat helps with rare disease research.  I am still determined to fight because I refuse to let this be it, to let this be my reality.

I have had a lot of time to think lately and I have so much that I want to do.  I want to get back into photography and making documentaries, get a small house at Serenbe with a plot of land to have an organic farm.  I want to expand helping others with rare and debilitating diseases and also those that just need help.  In helping others, he helps me forget about my condition if only for an instant.  I am not sure if that is a good reason to help others but I am going with it.  I close my eyes at night and I envision the farm at Serenbe Farms, waking up early to take care of my garden.  I come in for breakfast and rest for a spell, maybe answer a few emails from those out there suffering and searching for hope.  I take my new Sony SLT-A77 camera and work on a few documentaries to bring awareness to issues that have been abandoned or orphaned by our society.  After all, if you’re not in it, you’re not in it.  I would travel to speak on behalf of others at conferences around the world.  I would distract myself from suffering with all the things that I am passionate about.  Oh yes, and music and songwriting fit in there somewhere.

This all sounds great coming from a guy that has been bedridden for three years.  And oh yes, neck deep in medical and living debt.  But those are just things that I want or things that I dream about.  I don’t need these things to live.  All of those things would require the intervention of several hundred thousand dollars and I just don’t know people that pass out things like that.  If I did, I’m not sure I would use it for that anyway because there is so much suffering out there.  There is the great dilemma.  Where does what you have for yourself and what you give to others begin and end.  It is easy to get lost on the end of your needs and completely lose sight of what you wanted to do in the first place, help others.  I think the answer is different for everyone and is found within one’s own soulful reflection.

I am trying to get moving again.  Life is just hard right now and that’s ok.  Life is hard for many of us, but we can’t dwell on the things we can’t change.  We must fill our minds with good things, mindful that things can change no matter what the situation is.  We just have to Be Strong and Take Heart.

Learning to Walk



Yes, I’m still here for those still listening.  I haven’t written since my August 30th surgery because of so many reasons.  I never knew that this would be one of the hardest things that I have ever had to fight through in my life.  First and foremost, the surgery was a success.  I go back to New York next week to get checked again by the surgeon to make sure everything is growing correctly and that the new vertebrae the doctor built for me on the fly is healing well. 

I want to thank everyone that has been praying for us.  I tell you that I have felt the hearts of so many asking for mercy for my condition and a new life for my family.  I feel like every week I am getting stronger and better.  One of the good things right now is that since my immune system is occupied with such a massive healing, my immune system is not overrunning my nervous system like before.  The central pain that ran throughout my entire body has disappeared, at least for the moment.  I’ll take it the break even if it is temporary.  For three years non-stop, I have been bombarded by the suspected NeuroBehcet’s and its relentless attack on my body. 

It is a good thing too because the massive pain from the surgery made that pain dwarf any pain before the surgery.  I have had to learn so many things again like rolling over, sitting up and yes I am walking again!  I use a cane and I have to limit the amount of time on my feet but I am feeling stronger every day.  I am not going to get into the details of recovery from start to finish.  Much I don’t remember and what I do is something that will never leave my conscious mind both horrid and moving.

I have felt some flashes of my old pain just to keep my hope in check, but right now I am just enjoying the tradeoff of strong back pain versus complete body pain.  It is to me a miracle even if it leaves tonight and most certainly if it disappears forever.

Recovery is slow, painful and depressing.  I need those that don’t mind to drop me an email.  You can call but it is harder sometimes for me to gather myself for a meaningful call.  So yes, it is Andy again, asking for you.  I need you.  Forgive me if it takes time for me to respond but please know that whatever you do even if it is just to continue to quietly keep us in your thoughts and prayers I’ll take it faster than a Cinnabon at the food court.  Our financial needs have grown, but I can’t ask for anymore in good conscience.  Most have given more than they can and the debt seems growing and insurmountable.  Thanks for helpings us so far.  One step at a time will we get on our feet again someway, somehow, someday.  Let this moment just be a moment of thanks for my life floating up instead of sinking fast, if even for a season.

Much love to so many - Andy

The Prayer Blanket



It seems like forever that I have had something decent to write about.  I have some things that I have written in my journal but the thoughts, the experiences are just too depressing or deep to share.  Those things I write down and then lock away, burn and bury.  There is nothing good in those things and only someone that has experienced them would understand.  I do save the experience and the spirit of hope in my heart when I talk with others in similar situations around the world.  When you are not going through this type of thing you don’t think so much about what pain people really go through in this world.  But when it happens to you or someone you know, the realization becomes up front and center.

We have been through the ringer with all the things that come with dealing with a long-term disease.  Our needs are great, our resources few and on top of that there are those sneaky wants and desires that edge their way in too.  Hey, we are only human.  We try not to have the mindset that we “deserve” certain things but you do have to do certain non-need things to keep life for the kids somewhat normal and to relieve some of the tensions that are constantly trying to pull you and your family apart.  So we ask for certain things to help cover our needs and we have been fortunate enough to receive things as they in a timing that can only be explained as beyond explanation.  We have also received things that go beyond what we have asked for and what we could imagine.  Things like my good friend Amy Hitchman paying for our family to go down to Serenbe so that the kids could go to the camp that they love and we could stay there and just be separated from our daily ritual.  Kristin Quintero has given us so many flights on Delta that I have lost count.  We have had friends that I won’t name because I haven’t asked their permission, but they have given us things that have kept us moving financially, spiritually and have given us the love and prayer that we need desperately above and beyond measure.

There have been so many things that people have done for us, some that we don’t even know about, and it has made our lives easier than doing this alone.  Because you can’t do any of this alone.  I’m not saying that there is never a feeling of loneliness or hopelessness, but it is the people in our live that are the greatest gifts in themselves.  The little prayers at night, the moments in thought while looking out a window, and the calls, emails, Facebook, Twitter messages at just the right moment, this things have helped fill the loneliness and give us hope in the face of this disease.  I put no gift above another.  To me, a simple prayer is no different than a million dollar donation, although we haven’t gotten the latter, they mean the same.  Support for our hearts, our spirits and the financial aspects of our lives.  This stuff is personal.  People are giving from their hearts and praying from the deepest part of their souls to help us.  If that isn’t the greatest reason for living and fighting for this life, there isn’t much more that can help you.  It is the people that we meet, the people that are all around us that give us life and affect us in so many ways.  It humbles me to think of all the open hearts out there to our situation.  It humbles me to no end and it drives me to want to be able to help others as others have helped us.  Humanity and grace are the sustenance of our very souls.

There is one gift that has opened my eyes to a whole new perspective on how much people care about not only us but those that are in need.  Lynn and Eric Stover brought to us a gift that caught me off guard, in a good way.  Lynn came over one day and gave me a gift personally and called it “A Prayer Shaw”.  It is a hand woven shawl that is big enough to cover me as a blanket.  They made it in as manly of colors as they could and it is quite beautiful.  What is truly beautiful is the story behind it.  The women in her church made this hand-woven shawl for me.  In my mind, I can see them making it and praying over every turn and every weave, every knot and every new color.  They pray as they make it, praying for my health and healing and for my family as well.  When they finished the shawl, her church prayed over it.  Every fiber of this shawl represents the prayers that are not only from them but all the people that know us well all the way to people that have only heard of our situation.  It is to me a representation of the fabric that connects us all.  The way that when one bad things happens, the people connected to your life help to bring strength to the weakness in the fabric.  They tighten the fabric to hold you and support you.  When you get better you do the same to help support others.  It is the fabric that binds us all.  Author Brian Greene would call it the “Fabric of the Cosmos” and explain it as the superstring theory.  That everything is connected by string-like particles smaller that the parts of an atom.  They connect the parts of every atom to each other so that if something happens on one side of the world, or the universe, it affects the entire fabric and in order to bring stability to the fabric, things must give way or help support deficits and also help distribute abundance.

When I first received the shawl, my daughter Reese quickly grabbed it and slept with it every night.  It had my smell on it and she said that it helped her sleep and she didn’t have nightmares anymore.  Reese has seen the gamut of this disease.  She remembers when I was well and we actively did so many things.  She tries to deal with the now daddy.  The current dad spends most days in bed and doesn’t always make it to her plays and doesn’t take her to the all the cool places.  Both of my daughters Reese and Lakin love the shawl.  A few weeks later we received a shawl for Mary, Lakin and Reese.  They are each beautifully and wonderfully made.

Tonight, several people are having a fund raiser tonight to help pay for my August 30th scoliosis surgery costs and costs surrounding it.  Our friend Joe Mayernik designed the beautiful poster shown above for the event.  It is based off of a new theme for our cause called “Be Strong. Take Heart” and the image is similar to the tattoo on my forearm that says “May Grace Free You Forever” (something that I have to constantly look down to remind myself to do!).  “Be Strong. Take Heart” is about not only our vision of my recovery from this disease but also us getting to the point to where we are helping others in our situation.  Ryan Snuffer has been gracious enough to allow us into his Appalachian Community Mission to help with local fundraising.  If you can’t make it to the fundraiser tonight and want to give then you can click on the link above to do so.  If you need to make payments by credit card then please use the Helping Hands Ministry that is listed on my home page.  Of course this is if you want to and I don’t expect you to.  We are trying to just have a good evening of music and community with our friends Mandy and Kevin Mann from Nashville.  Mandy played at my last benefit in December 2009 for those of you that were with us there in Atlanta.

Mary and I will try to blog as much as we can in the coming weeks and especially as the surgery starts and as I go through a very tough recovery period.  Prayers will be needed above all so keep this in mind or on your mind in the coming weeks and especially on August 30th when the 8-12 hour surgery will be performed.

Love you guys!

If it can bloom so can I - By Mary Barwick



I feel like I can’t do it sometimes. Feeling as if some days I can’t go on--Seeing my husband in bed all day broken and drained from this disease that takes most of his life. Raising the kids with a fuzzy mind and a burdened heart.


As I look at the flower on our front porch growing through the concrete I know what it is saying to me. I know its message.


The disease, the fatigue and the drudgery that consume me at times are like cement. And I feel stuck. Will it ever loosen its cold deadly grip? Will I ever make it through to the other side, will there be freedom from this immense pressure--this pressure that is too much for me to bear sometimes.


And I know the difficulties I face are not nearly as enormous as those in Japan and Haiti, for example. Or the 350,000 in Sudan living with HIV and Aids. Or the 70% of children and adults in South Sudan who don’t have access to safe drinking water and who die daily from diarrhea and other water related maladies. And who, unlike us, don’t have hospitals in every town with educated doctors and life giving medicines.



Don’t get me wrong I am not belittling my circumstances. I am a firm believer that everyone has their own pain. And just because someone else's pain seems greater than mine that doesn’t make mine any less painful.


BUT what it does do for me is it puts my pain in perspective and it gives me things to be thankful for, which in turn lifts my burden and gives me a heart of gratitude.


Like, why me? Why was I born in a country where we have safe drinking water, where most Americans have more than enough to eat and where there isn’t violence and war right outside my mud hut? Why? Why am I so lucky?


And while I have no answers for any of the above, I am grateful for our finances, our friendships, our medical care and our fresh water. I am thankful to be experiencing this burden during this moment in time and this place in history.


The flower is still there and so is my epiphany. I relate to the pressure and the feeling of being stuck. But there is a more powerful message in that yellow flower growing in the concrete:


Things CAN grow. They can be beautiful when the perplexities press.


But how?  How in the world do I grow? And more than that, how in the world do I bloom? Where do I get my water? Where do I find room to breathe?


The answer: You just do.


Life has a weird way of working, of providing hope and a way where there seems to be no way. Of pushing us through and making something beautiful out of a life stuck in concrete.


But for me I have to be open to seeing it. I have to be like a little child. And know that I will grow whether the soil is rich and hearty. Or if God is silent and far away--If my “soil” is like rock.  A rock that presses in and withholds the light and the water but miraculously, somehow, allows me to grow and to bloom.