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. 

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.