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.

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 depth of winter, I finally learned that within me there lay an invincible summer

- Albert Camus

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 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.

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

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 on the website 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