"behcet's"

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. 

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.

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.

A Cane to Climb a Mountain


For the past month or so, people have been making comments about my walking cane.  Yes, most days I have to use a walking cane to help with balance here and there.  I also had to get a handy dandy parking ornament for my lack of ability to walk distances.  These little things have been hard to bare.  Along with the cane and parking hanger come the inevitable stares.  Some of wonder, some blank, some angry and some a swallow of sadness.  For me, watching my body slowly lose physical ability is incredibly hard.  But I don't think it happening faster would be any easier.
One day, I was staring at canes at CVS Pharmacy while waiting on my regular rotisserie of medicine refills.  Near the drop off for prescriptions there was a display of a “variety” of canes.  I was thinking at how dreadfully ugly the canes were.  In particular, I held a deep bronze cane with a black handle; Ultra-light aluminum of course.  Modern for the elderly unless they are a part of the distinguished elderly crowd that gets the cool handcrafted canes that people with interesting tales to tell hold.  I didn’t think any more of it until a few days later.  Later in that week, I went to visit my father who had another stroke.  One morning while I was helping transfer my dad from the bed to the wheelchair he went limp in my arms.  I had no choice but to muscle up the dead weight of my father back to the bed to prevent a wheelchair face-plant.  He had another small stroke in my arms.  Between the physical strain and emotional latent idea of my father possibly dying in my arms broke more of the tiny pieces that are left in my shattered former image.  I had to have surgery to repair a small umbilical hernia and my pain levels and fatigue elevated to a new level, actually skipping a few levels to pull directly into Grand Central.
The next day after helping my dad, I was walking with a noticeable limp and I was in a good deal of pain.  My mother gave me a cane that my father had been given before he met his current walker and wheelchair.  And of course, the cane was the exact deep bronze cane with a black handle that I had just held in my hands at CVS just days before.  It was too much for coincidence and too close to prophetic so it bothered me deeply.  It bothered me because more and more of these types of things are happening.  It is as if I am almost seeing the fabric of the universe or seeing the “Matrix” without any equipment or guides. 
Of course when I got home all of the people that know me well said that they were going to get me a cool cane.  After all, I was too young to sport that type of cane.  I went on a quest myself to find something more comfortable as well.  The current cane was killing my wrist because it turns out I have peripheral neuropathy in my hands and not carpal tunnel syndrome.  So I needed something to give a little as I pushed down on it.  I looked at the traditional walking cane companies and could find nothing but old man stuff and the web had cool things but only for pretty steep prices.  So I went to REI and found a walking cane that was used for hiking trails but had a handle more like a traditional cane, made of cork of course to float in the water if dropped.  It had shock absorbers on it almost like a car suspension system and even a little spike that could poke out if I were ever to walk on a slippery slope.  Best of all, it was an awesome price.
My good friend Keith came over the other day and noticed that I had a new cane.  He pointed out something to me that never once crossed my mind but really made me do a philosophic stumble into something wonderful.  He asked me, "Did you ever ask yourself why you bought a cane used to climb mountains to walk around in daily life".  He looked at me with that half-smile with his left mouth corner pointing up.  This usually meant that this was a rhetorical question and he was showing me something my subconscious had sneaked past me.  Inside this mind, this wonderful mind that has to this point been spared, I was awakened to the subtle irony of my using a cane in my daily life, to climb this Mt. Everest of a disease, a cane that was designed to climb real mountains.  I guess my mind is moving faster than my eyes can see and my vision can capture.  What a wonderful thing.  Yes Keith, I will use this cane to climb this mountain that is not only before me but to keep me from falling back down beneath me as well.  If the day comes that the cane does not support the burden of what I am carrying then I can only hope that my mind is still attuned to giving me the gear and the little inspirational things here and there (Keith stick around) to climb and conquer all that stands before me.

A Man Stranded



It is common during wartime that when a man is down he is not left behind. It is one of the few kind aspects that persist during wartime. I was thinking about that today and how we leave behind so many people that are sick or injured. Sometimes we don’t completely leave them behind we just forget about them after the initial shock or carry them part of the way and realize that it is hard to even be near the critically ill because it is so deeply depressing.

There have been times that I have wished that I have cancer. Seriously, it would be something tangible that people would believe and that I would never have to explain certain things. Things like why I was in pain or that the pain was so great that I couldn’t walk, that I fall down or that I jerk uncontrollably sometimes awake and asleep. Yes, if I had cancer, I would not have to explain these things. I would also have people walking by my side and sometimes carrying me on a stretcher to get through things. But cancer is not what I have.

I am the unfortunate recipient of not only a rare disease, Behcet’s, but I also have another monster lurking somewhere underneath that is either something new, rare, known but bad or a form a Behcet’s that there are only a handful to have known to have it. This monster is taking my life slowly from me. Doctors do not know what it is. The smartest doctors know that it is coming and that this monster exists. But the right symptoms have not made their presence known. Everything I have is being taken from me in so many ways but I could care less as long as I have my family. It is taking my health, obviously, or I think obviously. You see, sometimes after a lengthy illness people start losing faith that you are struggling or they start asking questions about what exactly is going on with you. Especially when you don’t look sick on the outside like I do. You might catch a wince of pain or my eyes drifting upwards as fatigue takes over as some outward symptoms, but I look healthy on the outside. It is not that they don’t trust you. When they look back they remember the person you were. They know your character and they know that there is no way that this could be some mind manifestation or that you could be making all this up. You really have to have faith that this person has what they have unless you have outward signs or disturbing tangible symptoms. Faith is hard to maintain, even in perfect circumstances with intangible evidence out the Wahoo. Faith is but a rumored fact away from being burnt to the ground sometimes. But in people’s doubt, they break your spirit, they break your trust. This is what really takes the wind from your sails. This is something that people don’t realize when they ask questions or doubt your symptoms. At times, these feelings will betray you and try to break everything that you have. But you know it is real. You know the pain is real. You know the swelling is real. You know that the jerking and the nighttime seizures are real. You know that when you have to have surgery on both hands for carpal tunnel that is real. These are all tangible things but these are not things that people get to see unless they are always around you day and night.

If I had cancer, my word would be tangible and never questioned. Sometimes you feel stranded without the tangibles of other diseases. But as time goes by, I get the “terrific” tangibles like having carpal tunnel surgery on both hands at two different times. The carpal tunnel popped up one stressful weekend and well stress and autoimmune diseases don’t do well together. Isn’t it strange that both hands did the same thing at the same time during a stressful event and now within a very short amount of time I already have nerve damage and need surgery? This is a tangible. In time, I know that more and more tangible symptoms will appear that will catch people off guard. These same people that doubted will become saddened by what a terrible disease this is and what it has done to you. Getting the backing of the best physicians in the world provides some intangible help, but people still doubt, still question because they don’t understand the rare and the unknown. It scares them and it should.

What has happened to me can happen to anyone. Take inventory of your lives and what is precious to you. Take to heart the people suffering around you whether you believe them or not at least give them a chance. I am not saying that everyone out there saying that they are suffering is truly suffering, but many of them are. Suffering is not something that many people make up when they come from a life where they had no need or want, where at any moment they could have that life back if they were able to work. No person in their right mind would make up such a thing.

Many are silent about their suffering. I was for many years until it took everything I had physically from me so that I couldn’t work, I couldn’t play sports anymore, I couldn’t do the things with my family that I used to do. I was quiet because I didn’t want to make a big deal out of it. I want people to believe me but if they don’t then more tangible evidence or a more tangible diagnosis for people to understand what devastation has befallen my life is highly likely. I don’t want it to be. I wish that it would all just disappear and go away just as fast as it came.

For those of you that have stuck this out with our family so far, I can call you nothing short of heroes. Truly and without a doubt you are the salt of this earth by which we all should be learning and living from your example. For those of you that are scared, doubtful or just aren’t sure, it is ok, the tangible is becoming more evident and your comfort will soon be satisfied. I don’t say that spitefully, I say that with a spirit that is calm but damaged. The doubt hurts but I can understand where it comes from. Just know that I love you guys just the same and I want you to join me on this journey. My family desperately needs your help more than ever. We need people to be with us in community. We need people to spend time with us and help us fight the daily battles. Don’t ask what you can do for us, come and do what you think you would need if the situation was switched. Whether that be sitting and keeping us company, watching the kids for an afternoon or evening, doing a load of laundry or giving financially, it is all the same. Help us, but help us with an open heart and a mind that is true and honest in the belief of what I am going through. You don’t have to fully understand it, heck some of the doctors don’t fully understand it but they see it right in front of them. They see the swelling, the changes in my blood and the pain in my eyes and on my face. The see things that defy science and they call in their residents to study. But they also see my spirit and the fight that doesn’t accept that I will always be like this. I am either too stubborn or too callous to give up. I will never give up as long as I can fill my own lungs with air. That you can believe in.

Over the coming days, I will try to write as much as I can. I am having surgery on my right hand this coming Friday, May 14th and then on my left hand six weeks later if all goes as planned. I am not sure how I will blog unless someone has a copy of a voice to text software that I could use like Naturally Speaking or something better. I would like to keep blogging. I haven't been because my hands really are killing me because of the carpal tunnel which we are not sure is or is not caused by the Behcet's. My suspicion is that it is by the fact and manner with which it materialized. Best to everyone. Happy Mother's Day to my beautiful wife Mary. I love you with all my heart!