"behcets"

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.

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. 

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!