Reaffirmation and Happiness

Just a few weeks ago, after my little update, I found myself on the way to Columbus. So this post is a bit late on the scene, but has arrived. Thankfully, before I came to Columbus I was able to get a healthy taste of spring, as I had been anticipating.  At home I have this small window to the left of the chair in which I sleep. I find that one of my favorite things to do these days is sit on its giant, cushioned foot stool and lay back into the arm of that chair; my face resting right there on top of it, my shoulder buried beneath.  With the window open, that little spot puts my face right into the cool breeze; making me feel just as alive as I have ever been.  The sunlight in the spring has a different glow; as if the color is sharpened by the height of the season.  The leaves were just beginning to surface when I left Findlay, small and deflated with the anticipation of their return to life close at hand.  I have since had the pleasure of watching them explode into life before my eyes over the panoramic view outside the hospital window.  Life has made a turn toward perfection, and makes itself increasingly irresistible.

The coming of spring has always held a special place in my heart; a season when people fall in love all over again, and the rebirth of everything becomes intoxicating.  The feeling has yet to fade, even though summer is rushing toward us with unwavering haste.  Myself – I have memories which feel less like memories, and more like the present.  Every year cascades into the next, and the nostalgia with which you are left can be quite powerful, indeed; but this is not what drives the spring.  Even with feelings of nostalgia, this time of year always has the unique majesty of a season you’ve never seen before; making every spring as much your first as every spring before it.  Everything is new.

I am just so grateful for an increasing amount of human contact in my life over the course of the previous weeks.  Several of my wonderful friends have come back and forth over the passing days; reassuring my confidence and bolstering my conviction. The people I know are such magnificent people that I can’t help but feel like the luckiest man alive.  It is a good thing, indeed, that I have not yet lost myself to a more discouraged moment, or impatience.  Perhaps it was only a matter of time to begin with, but mostly it was a matter of perspective.  There will be failure built in to any system in which we forget to search for what is good in our lives.  And search we must, because time tends to bury that which we have carelessly left out on the shelves.

In my moments alone, I find myself reading once again.  It’s been some time, and my large library has become lonely and abandoned as a result.  It’s quite a treat this time of year, to read something just as breathtaking in its beauty as the world in which you can find yourself reading it.  My first year at BGSU, in the spring of 2002, I have quite a fond memory of doing much of this.  I had an early class, so I rose with the sun; but after this class I would often skip everything else for the rest of the day, find a nice bench outside, and finish reading whatever book I was recreationally reading at the time – never any school work.

I remember the way the sun could shine there, and the scent of the campus on those mornings; the blue sky particularly sharp in the earlier hours.  The sun would shine through the new leaves and leave everything with the faint green tint, while the breeze would carry the scent of the new blossoms and grasses too young to be mowed.  The leaves on the trees had this amazing translucence, and when you could find a bench surrounded by trees they could make you feel almost as though you were sitting beneath a green stained glass dome.  I really fell in love with reading in public places after that.  It got so that everything began to work together in such perfect symmetry, that I can chronicle my life and where I was – what I was experiencing – just by looking at my bookshelf.

Life in the present is just as spectacular as life in the past, however; though it offers some new challenges these days.   The last month or so, especially, has been a trifle difficult.  My health is beginning to make mornings impossible entirely.  It’s funny really, but I can barely function until I’ve been awake for at least three hours – coffee notwithstanding.  I recently took a trip down to the Columbus facility, and I actually had to laugh a few times on the way home; reflecting inwardly on just how exhausted I was from simply sitting in the car. Later that week, I finally came back for this admission – after five months out.  It was a long time out, so I’m putting that one in the win column.  At any rate, in my update I promised this post weeks ago; so I apologize for the delayed fulfillment of that promise.

The hospital stay itself has been enlightening to an extent.  My quality of life will be different from now on, and I think that this stay will not quite restore me to my baseline.  This is not of my own design, unfortunately; but I feel good about it because I know that I’ve given everything I had to give.  I knew from the start that I was going to start taking damage sooner or later, and that the degenerative aspect of CF would operate in spite of the work I put in; but I plan to make as much noise as possible on the way down.  The fact that there are no surprises here means that it just isn’t as bad as it sounds – so chin up, readers, because I’m ok!

Lest my conviction waver as the physical obstacles mount, from time to time I like to reassess who I am and where exactly I think I need to be headed in my life.  I remember starting this site, and I remember the energy that I was able to commit to the unknown.  It still feels right.  My quality of life is the only thing that I feel has changed between Gabe today and Gabe two years ago.  In the last several days it has become important to me to really revisit that truth.  In spirit, I feel I am still healthy. But more than anything; I am more convinced than I have ever been that true happiness is a choice, and my illness is my blessing – I will grow from this experience.

I think there is an inherently kind nature in the human condition, and one which also begins to equate illness with sadness rather than perseverance.  When one should look at my situation and reflect that I have a challenge from which I may overcome, they begin to automatically gravitate toward the conclusion that I must suffer endlessly.  This is a good thing, in a way, and speaks volumes about the great extent of human kindness; it is great, indeed, that what obscures our vision in this regard is an unrestrained empathy and compassion.  Pain and discomfort are unfortunate, horrible things; and nobody wants to know that another is in pain.  But, alas, they do exist.  These things do not exist in a vacuum, however; and that is my larger point here.  It is because of the power of the human spirit that pain does not have to be a breeding ground for sadness.

While compassion and empathy are healthy responses, and they can allow us to feel concern for the well being of others, I often encourage those looking in on me from the outside to not feel sadness as well.  There is much room for rejoicing! Small victories are cause for joy, and must be recognized as the victories they really are.  The old glass half empty/half full concept actually applies here, with teeth.  While I could feel remorse for each day that I struggle to make it to the kitchen and back, I instead rejoice that I can still make it to the bathroom and back; for each day I struggle to breathe, I may rejoice that I am still breathing. It really isn’t more complicated than that.  Having CF is hard, without a doubt; but it absolutely will not destroy the fact that life is a wonderful thing – disease and all.  In spite of the pain and occasional trial life may require of us, it is a celebration the entire time.

The stakes are the same as always.  I am a man, sitting about the same house and the same hospital, who will either lose his life or get his lungs.  Breathe Easy has always been my way of shouting to the world: “I am sick, and I am happy!” – my way of reminding the world that life is absolutely amazing. Absolutely. Amazing.  I believe with my entire being that there is happiness here, alongside the CF.  It’s funny, but everything I ever wanted is everything I have.  Right here, on the same site that I have shared with you my fears of starting with a clean slate, my thoughts on spirituality, my frustration with the long wait; has always been the most important ideal in my life – being sick does not have to mean being beaten.  Being sick is a part of me that I consider a gift, something which provided me with perspective and growth; and something I can overcome.  Happiness is a choice, and I have chosen not to suffer.

The mind is the realm in which this battle is to be fought.  Every day I wake up, I go through the motions; and it can feel downright miserable, physically.  Every afternoon I do treatments again and again and transition into the night, ceaselessly coughing.  This doesn’t have the makings of an enviable situation, and it would be easy to cripple myself with negativity; but I simply have no place for it, and cannot afford to let it tear apart my spirit.  We must not forget that our personal struggles do not have to consume us; for if we lose sight of the fact that happiness is a choice, then the trying moments in our lives will make it easy all too easy to forget to make that choice.  Diseases rob us of our spirits as much as they do our health, and that is the cause of the suffering.  It is ok to shed a tear over the pain, and to shed a tear to cope; but the minute we begin to shed tears as an effort to completely escape the situation we are in, we have opened the door to defeat.

Staying happy is easiest when you can keep the things you love as close as possible.  Of course, our being limited in scope, people in my situation will have to rely on these things being close in their heart and mind alone for the time being.  I have these vivid images in my head, fantastic landscapes and long travels; amazing smiles and the kindness of people.  I live for the beauty of life, but I feed off of the hope of my next great challenge.  What matters most is that when your life becomes overwhelming, and you can no longer find your way home, you keep these things so close that your heart stays pure; we must never lose sight of just how special life really is.

I find that on occasion it is healthy to remember what it is that keeps me strong; remember why I think this is worth the effort. It would be so nice to have an easy answer to a question like this, or maybe some digestible little witticism; but the truth is that the answer is always changing.  The largest constant is people, and they contribute to almost every thought and word I’ve ever had.  Of course, this amounts to more than sitting around my room and smiling a goofy smile for the simple reason that happiness does exist.  What is most exciting to me is that throughout my life on this planet I’ve seen these kindnesses, and I know how wonderful they are.  I am frightened of those first moments jumping back in, sure…but someday I get to be a part of that world again.  Even if I only get to make one person smile, or do one kind thing when I finish; it will be worth it.

It brings me great joy to know that all over the world there is kindness, and in much greater amounts than any one person could ever hope to counteract with anger. Sure, bad things happen all the time in the world, but kindness prevails.  Somewhere at any given time, someone gives another a shining smile and says “good morning” for no reason; another gives someone a strong hug to let them know they understand.  All over the world people are celebrating birthdays and throwing baby showers; countless parties without purpose, simply to enjoy the love of your peers.  Every time I have a quiet day, I can be sure that there were millions of kind and loving interactions that went on in the world apart from my company; that the world was still a warm and wonderful place to be. What I find the most remarkable is the scale of the human experience; billions of lives here on Earth, none greater than the other, coming together to survive.  While things can go wrong, economies struggle, or governments wage wars; the billions of us beneath the fray can unite as communities, and love and friendship can blossom anywhere.

Even though I always try to stay conscious of how magnificent the world is, sometimes staying happy is no more complicated than meditating on the necessity of the choice itself.  Happiness is something so important to our survival that it seems surprising that we can lose sight of it so fast.  At the end of the day, it is this happiness which gives me the strength to sit on all of those treatments and muddle through all those mornings.  My sickness is not a sad place to be, you see; I make sure it is a joyous place.  It just needs lungs! At this time in my life, and with this site, I feel that this is a necessary reaffirmation; a new commitment to an old mission statement.  The wait has become so long now that there is so much monotony with the progress here; sometimes it would be easier to let conviction waver or forget about it altogether.  Instead, I pick myself up, dust myself off once again, and push forward.

It’s hard to say what the next few months have in store for me.  I’m getting ready to head home from the hospital in a few days, and I anticipate feeling some stability.  At the start of the year I had this enormous burst of energy and good health, and I was able to exercise and become somewhat active.  Reluctantly, I admit I’ll never be able to go backwards here; but I feel positive about where I will be next week when I return to Findlay. I suppose I’ve learned something this time, and that is that even if I get permanently sicker and have to make a large adjustment to my daily routine; I am still, after all this time, happy to do it.  But at the end of the day, what really strikes me is a particular feeling I’ve had for awhile now. This strange calm has descended upon my life; something inexplicable, yet comforting.  There is this smooth flow to my thoughts, and my days have begun to feel significant.  The feeling strikes me as the realization that my time on this list has been long, and substantially so; but that that also means I am getting closer to the end than I am to the beginning.  Each day that passes is another day closer, albeit to an undisclosed date.  Each day is another opportunity for me to get closer to the finish line.  It’ll be any day now!

Update From Breathe Easy!

My Heavens, it seems it’s that time of month again.  I have found that the past week or two I’ve been pretty fatigued and a trifle under the weather.  Check that…a lot under the weather.  It does seem that all of my effort will not be as productive as I originally had hoped, though I consider this to be less of a concern than one might think.

At the end of the day I have to say to myself: “Look, you know what you’re doing – and you know what you’re in for.  Now stand up straight and be proud – and grateful!”  The reality is that I knew my quality of life was going to go down more and more.  I was not a fool for trying to stop it, because I believe I still can.  To think I could reverse it was premature.

That sounds worse than it is.  Let me assure you: to maintain is to achieve victory where  I am going.  I am grateful for the opportunity to have this life, and count each part of my life a blessing – no matter how difficult the journey has become.  At the end of the day, though, it is the ability to remember that for which we endure.  For those I love, and for those who love me, I endure.  For those I have disappointed, I endure.  For rebirth…I endure.

It seems easy now.  With spring keeping its promise, I can smell hope again.  I haven’t been getting out of my chair as much as I would like lately, and it has given me an opportunity to spend time with the breeze coming through my window – blowing on my face for the first time in months.  It keeps me in focus.  It adds perspective.  Because even though I thank God for making me exactly who I am, CF and all; it is not enough to look.  Someday I want to feel that world again.  When the skies turn pale orange with sun’s set…I want to stand right beneath them…looking straight up into the heavens.

Thank you all for reading my site.  I will return soon with a post proper.  I have been working on one already that I hope to have posted next weekend.  Until then, may this update find you all living wonderfully!

Love,

Gabe

The Landing

Here we are again, early middle year with our agendas set and the only thing on our minds being accomplishment of those ends.  Time continues to move swiftly, and the brisk wind of reality continues to blow.  The holidays have ended, and the early year influx of visitors has passed; leaving my room a ghost town once again.  It seems as though I have witnessed the past crafting itself into exactly what it should have been, yet as the seasons bleed together it still retains its presence to mind.  I have sorely missed winter’s passage this year, seeing only a perpetual late autumn; silencing the grass and the leaves but refusing the purity of the snow.  And the clouds…they rarely break anymore.  There is silence.  There is silence everywhere, and spring is waiting to bring its walls down.

I continue to grow stronger, time continues to pass.  I waited so long to make this leap that I fear I have already begun to fade away with respect to the world around me; making my stand as no more than a minor character in someone else’s fading recollections.  Perhaps it is true, but likely it is an exaggeration.  Rehabilitation has always brought in tow some degree of imagined isolation.  It seems that the human condition is such that it insists upon the uniqueness of its inherent struggle.  When one is faced with pain or tribulation, temptation is strong to refuse the commisseration of the kindred spirit; to insist that we can no longer be understood.  Equally symptomatic of sickness itself, arrogant isolation is something for which I am on guard.  Yet the burden of my baggage is something I hesitate to force upon another heart which would be brought closer to gravity’s whims through the misfortune of hauling my baggage.

I find that as I wish to grow outward as a social spirit, the experiences from which I have not yet learned are being pulled further inward; perhaps a subconscious and vain paternalism which refuses to burden another with the weight of my fleeting concerns.  I want so badly to be kind and to love, and this is something I can do.  The greater challenge, however, rests in the discovery of the happy mediums; the point where love of others and social organics can safely diverge from personal burdens, yet retain their honesty.  At what point, in the end, is it healthy to share the bad with the good?

The answer is a difficult one upon which to set the finger. Something akin to the childhood folly of choosing where in the world you should be by simply spinning the globe.  It is my practice to withold all of that which is bad, and to keep it within my own heart.  I don’t seek to bottle it there without release, because that tends to be self-destructive.  However, every time I vent all of my frustrations on another person, I am always hypersensitive to the threat that those frustrations will manifest themselves in some way upon that person’s heart.  There are friends who take great joy in this opportunity, while there are friends who take advantage of the reciprocity in unhealthy amounts.  I am personally grateful for any opportunity to lend my shoulder or my ear, yet I resist the need to take either.  Happy mediums, happy mediums.  I feel like I vent inward so that I can process what is going wrong and rework it to benefit myself in a healthy way.  This is a valuable form of catharsis, but also involves little outward burden.

I feel, however, that in spite of my refusal to weigh upon others, I am able to retain emotional honesty – and this is my main concern.  Take Breathe Easy, for example.  This site is the most emotionally honest I have yet been in my life, but contains none of the primordial goop of unprocessed baggage.  It isn’t because I am dishonest, but because what I bring here is emotionally conclusive.  What I mean by this is that I don’t bring my problems to this site so that I can suss them out on the internet.  Rather, I sit on those raw emotions and cope with them, explore them, think them through; and in the end I bring you my experience.

Nevertheless, I am plagued by this idea that the kind of internalizing I do paints an incomplete picture.  There is some degree of commiseration which I feel I am obligated to offer as a reciprocation of sorts, so I tend to fear that the totality of Gabe Poland becomes a trifle diluted upon seal because of how hard I pull inward.  I suppose it doesn’t really matter, in the end; as I believe in what I say and feel some responsibility with regard to making sure the world knew I was here once; for there will surely come a time when I am no longer.  I recognize in my previous posts a tendency to share only these conclusions, and this paints an unfair picture for the CFers who do suffer; my positive message perhaps a bit insulting in some contexts.  Thought I am not suffering, and I feel no suffering now; I know my case is not universal.  So for those of you who do suffer, I do understand and will always have an open inbox.  Nevertheless, sharing my conclusions is as honest as I know how to be, I suppose; though I fear that in all of my hours alone I am at risk of drowning in my own introspection at times.

In fact, I seem to have already begun to drown in those thoughts.  The prospect of leaving the house for my own purposes, and regularly, has not been an issue for a long time.  I talk a big game, and I actually meet my own standards on paper.  But now, as my health improves and my quality of life rebounds incrementally, the thought of leaving the house and diving back into the world is terrifying in its scope. It is a trifle funny how something I have gone on and on about anticipating is now being tainted by the scent of apprehension. Though I love those in my life dearly, I have spent so much time inside my head that I am a bit frightened of the whirlwind.  I have no jumping off point, and my ties to the world are several years old now.  My heart has remained in it, but my face has been forgotten.  I can only hope that my bite marks remain to signify those places into which I sank my teeth.

Those of us who have any given medical condition get used to being without society through years of hospitalization.  I would estimate, quite comfortably, that years of my life have been spent in a hospital.  And not just being hospitalized, but quite literally, in the hospital for years worth of days.  It is not a big deal to those of us who are used to it, and it can even be quite comforting to be there when your health is making you uneasy.  Yet there is some degree of expectation that comes with the absences: that when the time comes, society has upheld its part of the deal – remember us.

I think that through the course of my early education I was more likely in class than in the hospital.  As time wore on, though, I spent more in the hospital instead.  I regret that I hardly knew anyone at the law school, or that as a law clerk I was sick and absentee more than I was able to actually work.  Of this I have before complained, indeed.  This is standard with people in my situation, however, and my frustration in that regard is not unique.  What is lamentable, however, is that I grew comfortable with it over the years I have been an adult.  Each hospital stay is two weeks and I have maybe one or two visitors each stay; leaving 99% of my time to my own devices.  The other side of this, of course, is that the world knows how to function without me completely, and I am more of a ghost than a man.

It can sometimes make you feel that everything has been a dream.  Some nights I have these dreams of large bodies of water, in several contexts; deep pools, vast oceans, cascading waterfalls.  I don’t really know why, but this has always been the case.  I am reminded of these dreams, and it feels at times that the things I hold dear can sometimes be like that water. I thrive off of them, and find refuge in the solace offered by their essence.  Take shelter in their beautiful serenity.  There is a moment, only a moment, where your life is like your hands holding that water; and you stand as still as you can, grasping and cupping your hands as tightly as you can – trying so desperately not to let it all slip away.  But when you look down, it has all run dry – only two cold hands remain.  The water is gone.  There is nothing.

I suppose this is all in keeping with the general knowledge of my own powerlessness which has been drawing on me throughout the course of the last few months; waiting and waiting without any ability to control this particular facet of my destiny.  I have become overwhelmingly preoccupied with this powerlessness – all in a world that, admittedly, seems sometimes to offer many rather chaotic and uncontrollable challenges. Resuming my life out in the world, I hope to address this, surely.  I think, perhaps, that powerlessness is a symptom of the fear of a completely blank slate.  Often, when one feels that they are in a completely unknown place in their life, they also get the sensation that they have no foot to the ground.

Of course, I plan on leaving no one behind.  Not being the person at the top of many schedules doesn’t mean you’re not on them and all that.  What I often worry about is not being emotionally or socially forsaken, but being professionally nonexistent.  My friends and family are my friends and family, and I love them; but this whole world will be new.  Nevertheless, if I have learned anything from all of this it’s that the world will not come to you, and neither will the people in it.  If you have friends, you will have visitors, but no one has the luxury of catering to the isolated whimsy of the insecure.  Though I grow lonely myself here in the room, I will leave it again someday; and, as I mentioned, that is the real issue at hand here anyway.  I want to jump back out into the world with a little padding.  I don’t want to land on the cement.  Alas.  Mea culpa, mea culpa.

It seems silly to be afraid to jump off into a world in which one could make any impact.  I could imagine that I am walking down a long road and looking into the horizon.  No one is around me and I have no idea where I am in the world.  I walk because there is a place I can just see in the distance, which I am unfamiliar with and do not know which name to call it.  Here there is a new world, one which I know of nothing and no one familiar.  How do I approach such a situation? Do I continue walking? Do I laugh or cry? There is a great opportunity in the question itself, and I believe that a new world is a great gift.  There is nothing to fear in a place where there is nothing to lose, yet there is infinite opportunity to make a positive impact on any place.  It seems my fear is misplaced, then.  When divorced from the context of loss, a fresh start is a gift in my own mind.  I’m pretty sure I’ve have even eagerly anticipated other awakenings right here on this site.  Once again, the real folly seems to be that I have fallen victim to my own hypocrisy.

In the end, if nothing remains but for me to forge ahead anew; I will do this with the same posture with which I stand today, and every other.  See, even though I am apprehensive, I am happy – and I am hopeful.  I think that, sometimes, it is simply important to ask yourself no more than why it is you do what you do.  I ask myself why I bother with the effort, or struggle with the therapies; why I stay positive, or stay determined.  It is because, in spite of some intimidation, I really do want to dive head first back into the world.  The fear shows my ability to lose sight of this fact, and may make it possible to lose one’s footing; or lose one’s cause.  Quite simply, it is never easy to fight for a lost cause, so one must be careful to prevent their cause from becoming lost.  In fact, it seems like a self-fulfilling prophecy to me; the easiest cause to lose is that cause which one considers lost.

As I sit here and edit this post, I hesitate to end the dialogue I have opened with myself, because I find that I am now incredibly excited by the possibilities.  We must never cease our internal dialogue, while making sure it does not cripple us, for this very reason.  I know now that there is a fresh start ahead, and one which I will embrace when I must.  In fact, I have done it before in so many cities and times that I wonder why this feels so much different.  It would be silly of me to expect it to come to me in my tiny little room, and weave some grand web within the heart of my castle.  One must give before he can receive; though one must question the substance of his intentions if he gives only to receive.  But when the time comes, I believe I can do this.  I can come to reconcile my fears and my ambitions in time.  Fear is a common thread which we may find in all of our sweaters, indeed; but it doesn’t have to unravel the whole garment.

No matter what I do, and no matter how introspective or isolated I will have to become as I wait for these lungs; I still find great joy in the knowledge that I won’t be for much longer.  I will give everything I have to give, and I will breathe fresh breath in a fresh world. I can do this because I have the strength of God and the strength of those standing at my back.  In the end, though, perhaps the most important thing to rely on is the strength within each of us.  Our inner strength becomes one burning flame in an organic network of wonderful people.  No matter how isolated I have been while being stuck at home with my health, and no matter how far my network fades, it will always be the people who will draw me back into the world happily.  As apprehensive or afraid as I may be, I look forward to those first moments of warmth and human contact which will give purpose to all of this waiting.  For what do we live, if not for each other?

The Overture

I had mentioned posting this edit back in January, and, as you can see…I sort of missed the mark by a mile and a half.  I have been recalibrating, and trying to adjust to some new rhythms as I begin the year – but, even though late, I made it!  This year marks the second half of my second year on the list.  Something less remarkable than it sounds, since I have sort of found an equilibrium that keeps me pleased.  My life has filled with love, and I have been able to awaken more emotional intimacy from within myself in a very real way.  It has been a life filled with the beautiful things I try to share here online, and even the beautiful things I was too shortsighted to make myself see.  I think I have found a way of finding something worth saving in every situation that has arisen; some lasting necessity, and an enduring reason why I would not dare trade away the life I am privileged to live.  As my ego continues its healthy deflation, I have been able to come to regard myself more flawed and fallible. This allows for improvement, and I can now come to take a great deal of delight in the knowledge that I have a new challenge ahead; some extraordinary task to yet better my person.  What is more, the unity of everything around becomes stable and sustainable; beautiful and enviable even in the misfortune of its rare tragedy.

This is the tone which has accompanied the glorious return of the first of the year; the birth of 2012.  I take great pleasure in allowing myself the indulgence of an annual rebirth every January.  This is always something I marvel at in some measure, because it seems somewhat at odds with my preoccupation with time’s rapid passage.  Nevertheless, when the year dawned, I felt no resentment that it came only to replace 2011.  It feels right.  The mood has shifted some, and I can sense a vast array changes ahead.

I introduced this site as I stood then, in 2010:  a man who was going to die, waiting for his lungs.  The lungs have not come, and my health has not gotten significantly worse.  The return from the cooling calm of death’s potential calling, and a stable return to form, has lasted for such a long time now that I have two options at this time: continue to take it sitting down, or force myself into the last bastion of my poor health and raise my own damn flag.  I don’t have to work out, and I don’t often have the energy to do it.  But I find myself locking my door, pushing the weight of my body off of various surfaces and curling various things; training myself for a contest I may not enter, and can never win.  It’s a slow process, and it takes all day.  A few exercises here, then again there – working with my exhaustion instead of in spite of it, to prevent damage.  I find it taking great strength to pull out the last gasps of air hidden within my lungs and make them work for me for a short time.  I have been doing these in addition to pulmonary rehab, and the exercises I do myself are much more strenuous.

Now, I feel like I should qualify a few things here.  Pulmonary rehab is something I have done unreliably at best.  As far as saying that my health overall has not been any worse, that is true in a sense – a sense.  My quality of life is diminished, as are my abilities; and I have cut some things from my daily life again recently to come out even.  My six minute walk test, the last time I was in Cleveland, was a disaster by comparisons; yet my PFTs were as good as they’ve been in years.  It’s all looking so…perfectly balanced.  It just isn’t clicking that I should be considering myself impossibly sick any longer.  I will not do it.  I feel like I’ve made a nasty habit of limiting myself to what I can do today without regard to what I could be doing tomorrow.  While I can say now that getting out of the house is something I simply can not do, if I focus with all my energy, channel all of my available resources – I might be able to make this work in spite of myself.  I have to be careful to pick my moments, and I have to be realistic that this may be an effort in futility.  I do not, however, have to stop.  I cannot share myself with others, nor can I serve others, from the confines of a room.  So this is my year.  By any means necessary.

2011 had so much inside of it, like an egg being incubated for 365 days to hatch on the first of this year at hand.  Much sickness was stored within, and by the middle of the year I found myself a permanent fixture at the Columbus facility.  More times than I care to admit I was scheduled for a follow up at the Cleveland facility, only to call and back out for having been admitted to Columbus some short time prior.  It was my failing to allow it, though, admittedly, not something I could control entirely.  Toward the end of the year, however, I made the executive decision to take it no longer.

I had a hospital stay close to the end of November, and this lined up [with some good fortune] my December in such a way that I was able to stay at home and spend an astonishing amount of time with AEZ, NEZ, and AR.  I was terrified that I wouldn’t have it in me, as I hold these people quite dear and in the highest esteem; so missing the opportunity to be in their company is not a desired option.  Because of their kindness, they spent most of the time we had together at my place since leaving the house is not something I can easily do.  Nevertheless, I was able to keep pace with no consequence.  I was also able to be a part of the family gatherings, away from the home.  Not only did all of this make possible the most amazing Christmas holiday season I have memory of, but it made one thing quite clear: there is room in my life, which I previously failed to take note of, to regain some lost ground.

I cannot undo the damage that has been done to my lungs by whatever time has passed and empowered the degenerative aspect of this silly illness.  I, however, have not permitted myself to empower it so long as I have been an adult.  Through some disciplined therapy, I will permit myself the indulgence of crediting my own efforts with stalling out the progress of the sickness since I was listed in 2010.  But not once have I forced myself into pressured conditions to engage in a task at which I knew I would at first fail; in an effort to one day succeed.  It is one of the great strengths of the human heart to persist through failure; to begin a challenge with absolutely no reason to believe they will overcome the odds, yet refuse to give up until they are strong enough for victory.

I may test the limits of my body every day for the rest of 2012 and continue to grow unhealthier in spite of it.  Or my condition may be too limited to enable the kind of work that will produce some kind of tangible gain.  There is, actually, a large chance that I will come out on the bottom of this pile with nothing to show for it.  But I wouldn’t know because I haven’t tried, and that is because I have been a coward.  I have not lived my life as a coward, because a coward does not live a life; and I find it difficult to look inward and find a portion of myself acting as such, shrinking back at the thought of a little physical pain.  I have said emphatically that having CF is not a fight, it is a blessing.  I believe this to be true, but perhaps I should have added to the thought.  Having CF is not a fight, it is a blessing; however, proving it wrong, is a fight, indeed.  But the fight is still not with CF, the fight is with the self.

This is something of a battle plan, I suppose.  Whatever it is, it is the way it must be now.  It is also small.  I find that my physical condition, as its threat recedes, becomes a small thing in scope.  My life is something I love, and though preserving it is something quite important – living it is the first symphony which I seek to compose.  Between August 2010 and this day, I have come to accept whatever fate may await me.  There is nothing more to say any longer when I seek to have an inner dialogue on manners of this nature.  I find that when I go to hunt for the right words, my heart is already in the same spot; and the words fall from my mind like the leaves leaving their branches – tumbling downward, having fulfilled their purpose at last.

The threat to my life being past, I find that my heart has continued to insist upon itself; persevering through the threat of failing lungs and into stagnant, though pleasant, equilibrium.  My heart tells me there is something I must now fight for, and I will do it; this is what I have described to you thus far.  Great care must be taken, however, to not lose sight of the causes and the faces which push us onward.  Through great struggle, our own innate desire to insist upon our focus can cast great shadows over the scintillating stars which guide us through the night.  We must remember the beauty of this world we insist upon fighting for; this amazing life within which we insist upon taking strides to remain.

Amidst all of this talk of perseverance and rebirth, I have not yet named my actual resolution for the year.  I absolutely love the process of making a New Year’s resolution, because unlike many, I actually take them very seriously and pursue mine quite vigorously.  It’s been a little habit of mine for some years now, and though I have often made broad and sweeping resolutions which cannot be completed with one year’s work, I nevertheless work toward that end.  This year I have chosen to work toward universally loving each person, without bias or judgment; to be kind without preference; to be more generous without self.

I have spoken at some length about the inherent value of each person in this world, and why we should function as one; now I aim to pursue that belief even further, and with more disciplined focus.  There seems to be an intrinsic  beauty to be found in the contact of a friend, or the passion on the brow of another who regards you with the same kindness; something unspoken which is reaching out to you, bringing you into the warmth of humanity.  Even in the worst moments, the human heart possesses great capacity to deserve love; something we often feel it is our right to antagonize through a misdirected frustration, or warped sense of justice.

Of course, when interaction is not naturally kind, it takes work and positive energy to make it so.  It is a shameful and sad truth, indeed, that it is easier in all scenarios to simply dislike people rather than pace your frustrations and train your patience.  Recognizing that the fault is internal in all of these situations is a good step toward universal kindness; to pass blessings onto the external becomes a matter of the utmost spiritual necessity – absolutely.  It is my belief that all arguments can be avoided by merely looking deeply inward.  Those with whom we disagree most aggressively become the most important people when we turn our hearts toward kindness.  It is within the heart of the opposition that you must approach with humble apology, enough for the past as well as the present.  Though it is the world in its entirety which must be scope of our compassion, it is individually which we progress to kind end.

I find great pleasure in the knowledge that I have no enemies in this world, in spite of whatever arguments I may have had in the past; my heart is at peace, and my mind is finding it easy to adjust to that.  I have reached a point where kindness is always a priority when I am fortunate enough to be with another; or interacting at all, perhaps over the phone.  Yet, what makes this resolution so important is that no matter how we feel we stand with the world, the world continues to grow around us; the necessity for peace and kindness evolving by its side.  The goal is constantly in motion and the seeker must be disciplined in his pursuit.  As we grow in kindness, love becomes natural; but I think we may find that new opportunities and challenges continuously arise for us in this area of our lives.  It is good fortune, then, that love evolves faster than anything, constantly growing within you; and with it there is no challenge too tasking, nor should there be any one person whom we find unworthy.

As these things go, however, I think perhaps generosity will be my greatest challenge; to give all of myself completely, and my possessions without hesitation.  I do this because I believe that discarding attachment to the material possessions of this world is something which I must do.  I don’t aim to do this without reason, as I understand perfection is not to be achieved by me or any other man; and I also plan to be here for awhile now.  I suppose my motivation is that I know I have things which I do not need that others actually would be more pleased to have than I; and that clinging onto a possession of this nature is not wise.  The moral weight of the burden of perpetuated acquisition is overwhelming to me these days, yet, at the same time I have found myself to be stagnating in an unfortunate reliance on…things.  I feel plagued by this notion that I am sitting on this pile of just…things. Possessions which were acquired to be nothing more than trophies, without reason, become a vain breed of spiritual baggage.

To be kind and generous are incredibly very broad goals, which may sound insincere to whomever listens.  In making these types of broad, sweeping resolutions I have to take care to be honest with myself, and recognize the card I have dealt myself here.  It should be easy, and I can make it easy – but I recognize the necessity of being realistic.  Giving away all of my things means hundreds of books, laptops, and everything else.  Though I think that these should go, and it is a noble goal; it is simply not in the cards for me right now.  But, then there are the things, and these will see that they have found a new home or charity by year end.  Mostly, and the most challenging part: one must be generous with their spirit.  I can find more things with which to be generous: to lend an ear, time, or some emotional support; money or even kindness – which brings us back to where we started, and is also the reason that being generous and being kind belong within the same resolution.  I have started this year selfishly, and without much focus; so this resolution also requires I make some fast changes, and make a bit of a one-eighty.  I can do it, nevertheless, and some more changes will be healthy.

So it begins.  2012.  The mystery of what lies ahead bewitches me.  I love the feeling that I am beginning a long drive through incredibly dense fog, and the farther I go the more hidden treasures appear within.  Something amazing could jump in front of me on the road, and I would know it instantly, or I may have to try harder; spending a bit more energy gazing through the foggy horizons.  As the year moves forward at a fast pace, I feel these fogs lift behind me only – some inspiration, then, to move ahead and continue my discovery. I will have to look hard, and think fast, because the year is already flying past me so fast that I can’t believe myself when I say out loud: “it’s February already?”

This will be the greatest year God has provided me.  I don’t need to live it to know that.  I felt hopeful for 2011, but for 2012 I am practically bursting.  I am so excited to live this year that I find myself wanting to shout it to the world.  I have hope, love, and a plan; I have the resolve to be kind, and the resolve to be generous; I have comparatively excellent health – I can’t escape this feeling that I may be the luckiest man in the world.  My health may regenerate, and my life may begin all over again; or my lungs may not come, my life may wither, and I may come out on the bottom of the pile.  I don’t care which, because right here, in this moment, I am just grateful for the opportunity to simply say that I can embrace this challenge with a happy heart.  I can’t wait!

Spirituality and God’s Peace

Over the history of this site, several of you have asked me personally about my spiritual leaning.  How can I believe the things that I believe? Am I a Christian?  How does this weigh on the nature of my illness, and the quality of my life?  This is the soup du jour.  The obvious answers are easy enough, but I’ll go to a bit of length as I am prone to do here.  January may be a busier month, as I plan to also post my New Year’s 2012 post this month as well.  For those of you who want to hear more about my day-to-day and the finer things in my little life, perhaps that is your post.  If you’re not up for a bit of religion and spectacle, it’s ok! – I know this is a bit of a divergence here at Breathe Easy! I shall see you in a few weeks with the New Year’s post!  For those of you who have been asking about my spirituality – this one may interest you a bit more!  So here we go!

My life is filled with happy things.  My life is a gift and a blessing.  I find when I think of it, that this perspective is only as old as my spiritual journey has permitted it to be.  There are many things in this world that make us cringe, cry, and leave us wondering how such things can happen – leaving us questioning whether someone somewhere could possibly be looking after us if they can permit such sadness to come about.  I could never hope to have a window into divine motivation, or understand something that it is not in our power to understand. What I do know, however, is that every time something happens to us or someone close to us, two paths appear in the road ahead:  we can either apply all our efforts at lending a helping hand and searching for the positive wisdom in the wreckage, come out ahead and learn from the experience – or we can focus our energy on our grief, and prepare our backs so as not to collapse under the weight we have placed upon them.  My spirit guides me down the positive path, and though I sometimes have to search for him, I find that God is always directing the traffic.

Some few weeks ago, I was awake at 3AM and trying to get to sleep again.  My room is situated so that the chair that I sleep in is within arm’s reach of the window cover; and I reached over and pulled it back to look out into the early morning streets – blackened by the moonless night, and completely empty.  There is solitude in the emptiness, and some minor peace can be found; as complete darkness tends to soothe the wounds of the world in the absence of the chaos of the day – but you are there to experience it with yourself alone.  In moments like that I feel something quite unlike loneliness, though it is, perhaps, the most alone one man could ever be.  There is a fire that continues to burn within, through the waking hours and the silent sleep, and for me that is God.  While I feel that my attention to my spirituality is a tending of the flame, God is the last bastion of strength in me, and the reason I can have that feeling that I had that morning; that feeling that even on the emptiest and darkest nights, our hearts and minds need never be completely alone.

It is important to prohibit yourself from stagnating in self-imposed isolation.  Even with people all around, the human condition is becoming such that we can feel alone in company when our identity is questioned or appears too unique.  For me, God plays a particularly potent role here.  As someone with an illness, spirituality becomes both more obvious and more essential.  Of course there is always the question: “don’t you think you believe only because you’re afraid to die?”  As an answer, of course that’s part of it.  But it is a small and unimportant part, and I’m not terribly afraid to die.  Truthfully, the greatest part of my centered spirituality is that I now know peace and kindness; functioning in a state of positive realism that I was completely unable to access before I knew God.

I place high value on the submission which religion mandates.  Humility is something I often struggle with, and submission to something greater than myself is a critical exercise in devotion and measure.  In fact, I think perhaps letting go of the reins at conceding that someone else is in control is one of the most difficult parts of religious spirituality where some are concerned. Alas, there is something inside of my arrogance that offers a flawed design for my life, allowing the demand for control to spin wildly out of orbit.  Religion also mandates that we put our best foot forward, in a manner of speaking – and I need this force in my life desperately.  Our greatest gifts are that which we should give, and our noblest effort must be our effort, indeed. To spend all day coughing and struggling for breath becomes less burdensome when you not only have a cause to lighten the load, but the positive direction to permit you to see that it may just be something you should be thankful for in the end.  This is also what we must give to those around us, and though I am still working to grow to a place where I can actually do so – I believe that we must give all of ourselves fully.

There is something intrinsic to our being, the substance of our fiction and the meaning in our truth. This is something which very few people hesitate to recognize in whatever form.  There is an incredible diversity of terms employed by people to convey the same thought: the inevitability that we, human beings, cannot possibly be as good as it gets – cannot possibly be the primary player in all of that which exists coming  closest to divine substance.  Not many resist admission of the concept, though many struggle with labels and paths.  It almost seems as if the common intellectual trend sets the Christian man up as automatically disqualified to stand among their ranks; as if logic is proof in the absence of faith.  But it all misses the point.  It isn’t about accuracy, it’s about clarity.

There is room in our lives for some mystification, but it becomes incredibly difficult for some to let go of their inhibitions and relinquish control over certain things; from minor details to great triumphs. Fear is a strong blockade for the spirit’s rise.  However, belief is healthy, and I would be dead without something to believe in.  It doesn’t matter what you believe in, nearly as much as it matters that you keep that part of you alive.  Never let go of your capacity to believe in something, and to believe without reference to statistical probability of success; to believe without the hindrance of desire; to believe with nothing more than the spiritual fulfillment one would find in hoping for hope’s sake.  Never stop allowing yourself to believe in something which saves your spirit, so that you may experience life as a miraculous gift.

It’s important to note at this point that my agenda is not to market a path to you, or insist upon my views.   With this in mind, I will tell you that I think about it like this: life is something of a forest – a jungle, if you will.  Getting through the jungle is foremost on our minds, but many of us insist upon swinging from tree to tree and trying our best to not be overwhelmed. In this case, some people may come out on the other side, but they then lose their purpose. Spirituality is a path of your choice, maybe it is a silly one or a long one, but it keeps your feet on the ground rather than hanging from branches; and if you make it out of the jungle, religion is the van waiting to take you back to civilization.  What if you get out and there is no van? Doesn’t matter much, does it? At the end of the day, you made it through the jungle with a smile on your face, and enjoyed the scenery, because you had the courage to believe in something; while everyone else stood around and debated whether or not there would be a van waiting at all.

For me it has always been a duality, Christian or Atheist.  Various combinations of cultural and contextual factors play out in that kind of ideological conformity, of course.  At any rate, for me the problem is much the same as any religion or non-religion choice, and I don’t think that the narrow range of options is a negative thing.  People criticize the limited range of options as an oppressive lack of choices, but that isn’t really the case.  People have a natural tendency to limit their options to what they know, and I did just that.  However, limiting your choices to what you know should never be a gateway for a person to condemn that which they do not know.  For me, limiting my range of options never manifested a myopic intolerance of anything outside my arbitrary range.  In fact, I think that the true ugliness of man is intolerance from ignorance and a failure to empathize; hatred is truly the burden of a broken soul.  Focusing your energies does not have to be the same as forced ignorance. What I’m getting at here is that, for me personally, my religion is one and the same as my spirituality; but my recognition of the different paths we choose does not make me think spirituality itself is any less valid.  There have been a series of moments in my life where religion made itself felt as a good and wise path for me.

As time goes on it becomes clear that one specific moment in which I determined my religious standing would be impossible to pin down with respectable precision, though I will mention a few in a couple paragraphs later.  It doesn’t really matter when, either, I don’t think, as the process itself was quite illuminating.  I remember spirituality being something which I insisted upon from roughly age 15.  Of course, at that point religion itself is kind of a mockery to the typical teenager, and considerable energy is spent on trying to demonstrate the superior way of what our adolescent minds think to be the answers.  In as stereotypically “teen” of a fashion as possible, my experience probably began with something like Siddhartha or one of the other alternative ventures that presents itself.  I like to think back and laugh about things like this, because the naiveté of the age is profoundly predictable.  Nevertheless, these revelations we think we uncover are useful guides in our development, so long as we seek to keep analytical and continue our growth.  There is much to be learned from embracing things which are foreign to us, even when we know we must grow apart from it in the end.

As far as organized spirituality, or religion, the closest I ever came at that age was a few errant visits to a Buddhist temple in the area.  Aside from this I find that, in retrospect, I was more anti-religious than anything else; going to great lengths to prove my point through debate and diatribe.  In my ignorance, I would even try to take faith away from people with these debates – to prove them wrong, as it were – as if their potential spiritual emptiness was something of a morbid trophy.  The last religious debate I really had was in Bowling Green, and it meant more to me to convince those people that there was nothing to any religion and that their cause was lost than it meant to even look honestly at the matter.  It was really easy for me to sit around and try and justify a negative outlook based on the fact that a religious one couldn’t be proven.  It was all very silly, but for the most part, the only thing all of this was able to prove is that I had a profound emptiness inside; and the world seemed to be coming down all around me.

Proving the truth in religion should never be the point.  We must be able to distinguish between a road map for our life, a companion for our souls, and a scientific inquiry.  Pointing at whatever inconsistency you can track down in the Bible or in the words of the priest is more of a negative hobby than it is a search for truth.  At the end of the day, if you read stories of great sacrifice, submission, or devotion, and you come away thinking nothing more than “that is not historically accurate” – you have completely missed the purpose at the expense of your spirituality.  This sort of reckless opposition to organized spirituality in any form was a great weakness for me in my youth.  I don’t recommend any path out of it over another, but I recommend an awakening by any means necessary.  At the same time, however, I would never recommend that we stop asking questions and growing as people and spiritual beings.

Before my health ever became a terrible concern in its own right, I began the process of unifying my spirituality with my religion.  I was never content with the idea that I was the only person invested in my actions, nor was I content to consider myself the final authority on the matter.  The process began silently, in the middle of the night; a subtle nudge in the right direction somewhere in the outskirts of Cincinnati.  I remember studying and studying when I lived in Cincinnati, which left me up at absurd hours and doing treatments late enough to drive SV completely nuts.  As I mentioned before, around this time I began to have hemoptysis regularly; often at particularly inconvenient times.  Incidentally, because of the way costs work out, going to a local ER was out of the question; leaving us travelling to Columbus for nearly every plot twist.

There was one particular night which found me up rather late, doing a treatment at roughly 1AM [these late treatments actually became the norm, and I continue to do the 1AM treatment to this day].  This treatment was not notably different, nor was it any more effective than usual – but something inside me got aggravated.  I was bleeding about as profusely as the run-of-the-mill hemoptysis, so I had to get my bags packed and head to Columbus in the wee hours.  SV and I got on the highway late, and about 30 miles north of the city I was out of gas and had to pull off.  There was only one gas station that we could get to with what gas we had, because I had forgotten to fill it up before heading out.

Pulling in, the station was the only place on the strip which was open; everything black and empty like the end of the world.  There was only one car to be seen anywhere, and it was mine; so quiet that every sound you make at this hour becomes a storm.  We filled up the tank, and then discovered that the cashier didn’t take our debit cards.  No problem, we could just go to his ATM for cash.  But, alas, we were mistaken.  The ATM was out of order and we were stuck.  We couldn’t drive down the street to another ATM because he wouldn’t let us take the car, and we couldn’t wait because we had to get to Columbus and it was incredibly late.   Right at this time, an old man walked into the gas station.  I remember that he didn’t get gas, or buy anything; but he did offer to drive us a few miles up the road to the bank’s ATM.  He didn’t say much either.  We drove down the street rather unceremoniously, accomplished the task at hand, and returned to the gas station to square things with the cashier.  At this point the man asked us to pray with him, and he gave us something before we parted ways.  He left.  We left.  He was our angel.  Yes, I believe this to be incredibly convenient, random, and coincidental; but I believe it to be this kind of incredibly convenient, random coincidence with which God moves through mortal life.

I continued to move in this direction, and when I returned to Findlay I returned to church as well.  Perhaps the greatest summation I can offer for my entire spiritual and religious unity comes through the ordeal of March 2009.  As I wrote in that post some time ago, I made brief mention of a blue rosary.  In that gigantic, lonely ICU, someone left me a piece of God when I needed something most.  That was the single biggest turning point for my spirit; the moment when I stopped seeing things for what they were and began seeing each thing as a gift in itself.  It’s amazing what a symbolic gesture can do for your spirit in times of need.  Perhaps all religion is, is a symbol -  something which stands firm in signs of trouble, a representation that there is good in the world outside of yourself should you choose to accept it.

I would say that God has become my absolute, and that the healthiest I have ever felt was the feeling of complete submission.  I love the splendor of the woven web; the sheer volume and immensity of the chance encounters, the coincidences.  There is power in this mysticism, and strength in God’s touch.  I can still remember more than simple events with regard to the debates and the denunciations in my youth – there was a heartrending depression in all of that world weary emptiness; the crippling mass of spiritual toxicity.  I wouldn’t say that I lacked a moral compass, because I don’t believe that religion is the only protection against becoming a sociopath; but I would say I lacked purpose and spirit.  We all spend so much time trying to suss out the meaning of life, and the meaning of the world around us.  But here, inside my spirit, I have a built in answer for questions like that; to live according to a righteous path set out for me.  This, for me, is to live for others and to share all that I can share; to empathize and be as compassionate as the situation demands; to be generous and kind; to love as hard as I can love, and to love without judgment.

This turned my health in another direction entirely.  I always did treatments well, and I have even written to that end at some length on the site.  But at this point, they meant something.  It becomes miles easier to strive for something when there is an extrinsic force pushing you forward.  This is part of my own personal belief system.  If I have an intellect and the strength to overcome Cystic Fibrosis, then I believe that those are exactly what I should give to God.  Not only that, but we must push forward with every fiber of our being, because when all is said and done, the best we can give back is to be at our maximum potential at all times.  It’s much like buying someone a gift: you can’t buy someone a $10 gift by tossing $7 at the cashier and hoping for decent results.

Now it is difficult for me to look at any part of my life without finding something redeeming sin every part of it; good or bad.  I feel that a light is always shining.  If you drive down the street and you look around you and feel as though this world and this life are a gift given to you; you’re accessing a different part of yourself than you are when you think of the conditions, such as the running of your car or the weather.  This is the performance your spirituality puts on, letting you know your life can be a spectacular play; cascading forward and spilling over with joy, the world standing in as your captive audience.  To witness miracles is something you must permit yourself, fighting an explanation to save your heart.  A miracle is easy to come by, and a miracle can give you strength.

Slowly but surely, as my quality of life improves, the quality of the person living that life improves in stride.  I fear that the person I used to be was cruel, and perhaps callous.  The importance of not passing judgment has placed a burden upon my shoulders which can only be supported with empathy.  When everyone becomes an organic whole, all problems a symmetry; the simplicity of kindness becomes incredible.  Every person is a gift, and a part of this complete union of hearts and minds; even the most difficult worthy of the highest kindness and respect.  Though I am a deeply flawed person, I hope that one day I can consider myself kind.  I struggle with the idea of unbounded generosity at times, and I struggle with the same egocentric frustrations with which we all struggle; but one day, my final goal will be to be remembered as a good and kind person, and nothing more.

The strength I find is something that is not unique to me, or my spirituality.  I find strength in everyone, and my spirituality finds strength in learning about what others believe and practice; or in simply sharing a kindness with another human being.  There is infinite value in what each of us believes, so long as we believe in something.  Each time I know I have helped someone grow as a person, I grow exponentially myself; and the reciprocal I hope holds true – each time someone shares with me and helps me grow directly, they may grow exponentially.  It seems  that other people are, indeed, a rich source of inspiration to me; openness remaining a vital resource for considerate humanity, playing an essential part in the spirit’s theatre.  And the love…there is so much love all around us!

There is something amazing about life that creates a sense of awe in each of us, some lingering remnant of the childlike amazement bursting forth when we see something truly magnificent; and this is only open to us because of the persistence of the human spirit and the power of spirituality.  I cannot find true beauty with my thoughts, but I can see it quite clearly with my eyes and feel it shouting from within my heart.  Life is a scintillating star; an effervescent spring; a kiss from someone we dearly love; the smell of spring; the crashing waves in the ocean; the sun setting in an explosion of colors upon the horizon!  Life is the magnificence of so many people, living in this world, functioning as one; filled with love and filled with hope.  Life is beautiful, and we are beautiful! God gave me this.

Amended Update from Breathe Easy!

Oh my goodness!  I really got swept away in the holidays this year.  I haven’t written a word! [except these, of course ] Nevertheless, I just wanted to update again – let you know I am actually going to post a real post this week.  I hope you all had a lovely, lovely Christmas.  I spent more time out and about than I have in a long while, and made it to both of my family gatherings.  It couldn’t possibly have been better!

I hope you all have a Happy New Year, and I’ll see you back here soon! Sorry for the delay!

Love,

Gabe

Awareness and God’s Peace

I had promised a proper content post some many days ago, and it seems I have failed to live up to my word! I apologize for the delay.  Some serious business arose for the Poland family in the days between, so I was unable to complete any work on the site.  It is amazing just how incoherent our thoughts have a tendency to become when the heart is given a shock.  In the end, God has seen fit to allow us to continue much as we had before, with some minor adjustments.  The post itself is now half of my originally intended post.  The idea was to finally open up and explore religion and its importance to the self, but this has fast sprawled out and become a separate [but related] post on each.  Religion becomes a heavily discussed area when illness and the end of life are concerned, and knowledge of the self bears heavily on that discussion.  A self awareness becomes critical in building yourself up for the fight of your life, as well as calming yourself down so that you may always be prepared to live in earnest for all others.

At any rate, the past month, since the composition of the previous post, has been uneventful; yet quite important as these things go.  I find that time is forever my only foe, silently flashing by and stripping my of weeks at a time.  I was able to leave the house for a clinic appointment in Columbus in the widening gap between hospital stays.  My mother and I made the drive, and I felt kind of dead and exhausted.  As the appointment itself came and went I began to get a mysterious second wind, and fell into the rhythm of the trip home and the quality of the company.  I was stunned, however, to be seeing the passing forests and fields.  It seems as though these early November winds no longer have leaves through which to blow; pummeling the bare trunks and whistling through the wreckage of the harvested corn crops. Placing your hand into the wind, opening your fingers wide to let the smells of the season’s air come against all of the resistance you can offer; forcing it to become a part of you – it has a romance which cannot be mimicked by quietly placing your cheek upon the window’s pane, desperately trying to feel the air change from behind the invisible wall.   It would seem, in the end, as though I missed the autumn completely for the first time; in spite of the anticipation of my last post.

I went to Cleveland again a month prior, before the actual change of seasons had set in, and now that it has passed I ventured out to prove to myself I had missed it.  Currently I am spending some time in Columbus.  The interim brought about several visits with friends, having come and gone; including some rare visits with those friends who come home less often.  Of course, nothing notable occurred at the visit to Cleveland; and likely my transplant score will only increase by degrees.  Interestingly, the PFT score I achieved at the visit to the transplant facility was higher than any score I had blown since well before these events came about.  Alas, this is not coming about because my lungs have found some fleeting cure; but, rather, because I have been doing four treatments each day to keep strong and relatively clear.  Perhaps the most damning evidence that this score does not point to healthier lungs is that my six-minute walk was a disaster, considering any other recent walk as a basis of comparison.

Alas, the current hospital stay was my first since mid-September, and my health seemed to have retained some level of stability and substance until just this week.  The interim provided some extra time for reflection, fortunately, and I tried to take advantage of it whenever possible.  In fact, recently, I have been completely reevaluating what I consider to be important in my life; spiritually as well as immediately.  It seems something I should have to do occasionally, just to make sure the water in which I tread has not become polluted by toxic desires and misguided ambitions. Reflection does not require any addition or subtraction, per se.  The idea is that I explore the depths of my spirit and try and remember what fueled my journey to this destination; once again embracing exactly what went in to the creation of this particular edition of Gabe Poland.

So many years have come and gone, but there are a few consistencies that link all of these years together; creating some protrusion on to which I can grab – a tether keeping me from drifting away, formless, into my own chronicles.  One of my less notable activities that stand out in my mind from time to time is cooking.  I remember some of the times I used to spend cooking, and I do so warmly.  There was something important to me about the smell of the food I could prepare, or the fact that people actually enjoyed my productions.  I did have a disaster one time, involving veal that was too thinly sliced, red vinegar, and bad planning; and I’m pretty sure I will never be able to eat veal again after that. This was isolated, thankfully, and only happened the once.  Often I would only justify cooking for other people, especially after SV left; thereafter I never again made anything for myself more complicated than a hot dog.  This is one thing I would eagerly pick up again, should I have the health.

Cooking, in spite of its meditative value, lacks the ability to craft and contribute to your spirit because it is your product in the end; not your fuel.  There is a large portion of myself that owes itself to books and the obsessive reading which permitted some low-level digestion of the material.  There is something exceptional about picking something up off of your own bookshelf and giving it full license to send your mind reeling back onto its heels; running your thumb over the slick gloss of the binding, your palm across the rough edge of the page.  Remorsefully, I began to reflect that perhaps this fire was in danger of flickering and dying out.  After years of reading as a sort of occupation, with school or distraction, time begins to seem insufficient; books begin to feel longer, and each one begins to threaten a diminished return.  As I graduated law school I found that the books began to sit untouched in my vast personal library, forgotten like the dime store novels of yesteryear; collecting dust, and fading peacefully in the sunlight.

Some little effort is always involved in the restoration of a forgotten love, and the threat of losing this particular love was unbearable.  Reading itself was always some remarkable experience – even the sitting down, with the book itself becoming some kind of awakening.  I remember very fondly the trips I would make to the bookstore, grabbing a stack of books and rushing them home, agonizing over which to begin first.  Something amazing happens when you open a book, you begin to understand the sheer magnitude of the world around you; represented by an apparent infinity of words on infinite pages.  The smell of the book in your hands, the weight of its pages; it all has a certain magic.  I used to flip through the book and smell the air rushing from the rapidly passing pages.  I became determined to start reading again, recently, and I’m trying to take it in slowly enough that I don’t feel overwhelmed and back off again; though I remembered immediately the feeling of wonderment that washes over you after something fresh and exciting takes your world and sends it spinning into an entirely new orbit.

Alas, material things like cooking or reading have no more than their little place in the exercise of your soul; sparing room for a substance more intrinsic to its bearing than books or feasts.  I value very highly the tattered moral banner that I can stand behind; flaws and all – and the positive energies employed in its creation.  Of all the things that go in to the representation of the self, I value the present manifestation of my morality even more than I value the things which composed it.  Religion is an important part of my life, but I am saving that in order that it may be the exclusive topic in one of the next posts to this site.  It might seem, then, that I place a lot of value on my ideology and its vain recitation. This is not the case, either, and I would go so far as to say that my ideology is completely irrelevant; merely a circumstance or a fleeting estimate – a proximity politik. In the end, there is something real about morality and religion that politics and philosophy only blossoms from, rather than stands beside.

At any rate, I require of myself a certain spiritual purity and mental clarity first and foremost.  I can partially attain this, and relatively easily, through minor forms of disciplined deprivation.  There is some small enlightenment that can come from recognizing your susceptibility to innate human desires, and making a commitment to cleanse yourself of them.  For these reasons, both moral and spiritual, I remain celibate as well as sober.  I have remained celibate for a little over three years now, and I gave up alcohol in 2010 – though I actually gave up alcohol before I committed to standing behind the decision morally as well.  I probably even talked about having a glass of wine until well into this year. To be quite honest, I was on the fence about it for a long time.  Initially I continued to drink because I couldn’t find any religious justification to remain completely sober; and there is something exhilarating about the utilization of such an easy social lubricant.  However, after some amount of time, mental clarity began to be just as important to me at all times; though in the end the transplant itself has made remaining completely alcohol free a possibility as well as a necessity. An unopened bottle of mead, given to me as a kind gift by PM, sits upon my dresser to this day; quietly aging, a remnant of a time when drinking was not included in my abstinence.

At this point, my poor health makes both of these things incredibly easy anyway; if not simply byproducts of the steady decline in the range of my abilities.  It’s not quite a totality, as I refuse to extend the abstained-from activities to caffeine; forever my beloved vice.  At the end of the day, however, simply depriving yourself of things is insufficient to develop your spirit and mind, really; also making requisite some form of positive effort and exertion, rather than exclusively negative action.  I think, perhaps, it would be impossible to actually learn much about yourself by actively not doing things; even if the things in which one does partake are as small as a simple thought. I don’t feel like it takes much, in the end; a spare moment for meditations, resolutions to action, kindness.

This is what I’ve been focusing on for the recent past; this reevaluation and positive effort. I am completely taken with the idea that each waking moment is one which should be spent doing something that engages our spirit in some capacity; that relaxing does not always become spacing out, but rather a form of meditation and reflection.  Of course, if you didn’t leave a little bit of time to space out occasionally you would destroy yourself; but the goal is to remain in control of it.  I think about a vast array of things when I attempt to engage myself, I suppose, but I try to never catch myself gazing soullessly with an unresponsive mind.

There is more to knowing the self than simply providing a recitation of your daily activities.  After a time, the necessity becomes the exploration of the things you value, and what is good in yourself; to truly know yourself.  Indeed, if you don’t yet like yourself, you have not yet come to know yourself.  It was easy for me in the past to be aggressively self loathing about the things I knew about myself: the disease, the flaws, the failures.  There is a substance that flows beneath the surface which is untapped by trifling lists, however.  The power of the human spirit is more immense than a checklist or a satisfaction guarantee; there is a force which emanates from the composition of our character, and the strength of our hearts.  If I wake up one day and make a decision to pass judgment on myself based upon the things that happen in the next twenty-four hours, I have placed myself at the mercy of the day’s events; but what should matter, instead, is the fashion and order of my spirit.

The purpose cannot be misinterpreted as self worship, because the purpose here is to find your flaws in order that you may fix them.  The value of self awareness exists outside of the absurdity of arrogance. What always needs to be taken into consideration is the potential of spiritual strength that rests within every person; there is no superior claim on a heart equally potent.  The process is impossible to replace or avoid, however, because only in an honest knowledge of whom and what we are can we find the strength to maintain our own unique happiness.

Though we each have our own potential to be exceptional and triumphant in spirit, it is undeniable that on an individual level our spirit is our own; our self being the only common person for each major event in our life – birth, death, graduation, marriage, divorce, love, firsts, and lasts.  I’ve been many places in my life; been around many neighborhoods, felt many feelings.  I feel, more than anything, free.  There is an intrinsic worth and liberation in familiarity with the self, and a comprehension of the totality of our own journey.  I remember my first conscious memory, the first phone number I learned, the first friend I made, the first sound that made me feel exhilarated; and I remember being the only person common to each.  Of course, this is prospectively always going to be the case; as it is the case for each of us – through life and to our deathbed the only perpetual unifying factor is the sound of our soul singing within us.  But the world is composed of billions of us, and we each possess a life just the same.

The calming hand of each warm soul in the world around us is infinitely more important than our single self, and living for others is a wise goal to have.  The strength of many wavers when faced with the stress that runs from the business of life, and self awareness is no medicine.  Merely possessing self awareness is quite insufficient, I daresay. True freedom, and peace of mind, comes to those who both know and like who they are; but not simply because they can now look confidently in the mirror.  Through self awareness we find God, and through God we find peace, and through peace we find the world.  Through knowledge of self, I find that I more eagerly take hold of the world and seek to be a part of it; without knowing who I am, I feel impotent and unable to contribute in any way.  However many books I read, their content, the morality with which I seek to refine myself, the number of hours I spend in reflection; all of this acts merely as a way of filtering my essence outward, and becomes completely irrelevant the moment I cease to extend my hand.

The truly sacred part of each of us is our capacity to reach out, and employ the entirety of our being in the interest of others; and to do so with positive energy.  I feel now, with my growing immobility, that I am risk of becoming useless; my limitations holding back from truly taking part in the world in a positive way.  If I stay on course, however, and continue to apply myself to my chosen reflections, spiritual purity and mental clarity; this will perhaps make me the best version of myself that I can possibly be when the time comes to make my contribution. There is a high value in making a sacrifice for others, and living to lend a hand to your friends.  It is always good to know at what point you would turn your back on a friend in need, and then to always seek to extend that limit further into sacrifice. I can only hope that I can apply the same principles to the aid of complete strangers.

In the end, however, I find that I am merely a boy, in a hospital bed, with lofty goals for the future.  I have been given this time, and self awareness is of vital importance; some spiritual permission to perform a complete makeover on my own soul.  Self awareness, and spiritual journeys themselves, are at high risk for complete self indulgence and arrogance; so I must continue to value submission and humility highly throughout the duration of my journey.  I think, when all is said and done, that it is quite alright to recognize the necessity and importance of your journey.  It is even ok to share your journey with others, or so I tell myself each time I compose a post on this site.  We will run into problems when, instead of insisting upon the greatness of the human heart, we insist upon the greatness of our own exclusively.  Those who insist upon themselves, defeat themselves.  It has long been said that the only wise man is the man who admits he knows nothing; and after all, why would one bother with going on a journey to self betterment if he is convinced he already has the answers?  And so the arrogant man remains stagnant, and perpetuates his arrogance at the cost of his spirit.  The human heart is flawed, but breathtaking in its beauty.  The mind is capable, adaptable.  The human spirit, with the power of all of the hearts and minds, is the essence of all that is good in the world; a bond shared by every person on this planet, linking us together as much as with hope and happiness.  What more can we ask from life than to be the best version of who we are, and to continue looking upward from there?

Update From Breathe Easy!

Hello friends!

I apologize for the gigantic, gaping hole which managed to open itself up between this post and the last post.

After some things began to fall out of place over the past month, life and health both required some minor recalibrating.  As luck would have it, I have managed to establish a new equilibrium and am quite pleased with the way things have settled. At a point one must toss their hands up and simply admit defeat, I suppose.  In submission, at times, you’ll find your only chance at victory.  After all, no bird has ever managed to get into the house by knocking themselves out on the thick glass of the window.

At any rate, I remain positive and my health remains exclusively my own.  Fall has come and seems eager now to leave us already, and the weather is very conducive to comfortable breathing at the moment.

I feel free, I feel happy.  I feel like rejoicing.  I feel…grateful, eager.

Time has begun to move slower now, with the coming of November, so I have been able to start work on my next proper posting here for Breathe Easy.  I will have something for you this coming weekend!

I love you all – please keep smiling!

~Gabe

The Coming of the Second Year

Many of my most precious memories are attached to this season; the sounds that reawaken, and the scents that intoxicate me with vibrant breath.  I was reminded the other day of some of my more private memories in this regard.  I used to have a small paper route when I was young.  I had the job for several years, silently walking the route each day in the solitude of the pre-dawn hours.  I was early regularly; so early that I often found myself waiting for the stacks to be delivered for an hour or two, watching the music of the disaffected 90’s youth come through the television until the moment the papers came. Each day the cycle repeated with no resistance. Cyclical. Dependable.  The best time of the year for this was in fall, with the excitement from returning to school with friends still fresh; the sun rising at just the right moment.

These mornings had a way of smelling and feeling completely untouched; too early to have been tampered with by the hectic push of the morning rush.  On these mornings I had just enough time to finish my route and return home, but steal away with my bike for an hour before anyone could notice.  I used to ride and ride, through the leaves and the air; following the trail of the sweetest scents before the thought of returning to an honest day could cloud my heart.  I was, for one moment, alone with the beauty of the world; a singular magnificence which I continue to chase by other means to this day.

It always feels good to have the people crowding together for the beginning of the season; something schooling was always able to provide.  Every year was a reunion, and a collection of positive memories.  Even high school accomplishes this, with the first day of school or the autumn football games.  As much as anything, what excites me about autumn is the way it has that quality of bringing people together naturally; perhaps an emotional survival mechanism in preparation for the coming winter – or perhaps merely a habit formed by our growing used to beginning school each year at this time.  As much as I value time to myself, it is the interactions with people that drive me, and I can feel my heart coming back to life again.   I have written many times about the intrinsic worth of community, and loved ones, but what strikes me now is that there are more interactions in each day than we can even comprehend.  We make business calls nearly every day; with each post on our blogs, our Facebook, or any other network, we reach so many more real people with the simple push of a button – and we have those we love.

I sometimes fear being trapped, and pulled away from the autumn communion; in my small room and alone with my business.  In this way, managing what seem like mundane affairs becomes a trifle more complex; even more so when immobility and financial strain are involved.  I find myself agonizing over trivial issues simply for lack of other things to agonize over.  Traditionally, the problem manifests itself through a small bill which may or may not be covered by Medicare or Medicaid; do I need a new filling in my tooth badly enough to let my student loans go in default, or can I manage both?  Things like these.

In a strange way, however, I have come to depend on the people with whom I get to transact my business; unknowing liberators from the crippling weight of the lonelier days.  These interactions have become one of the most important parts of my day now, especially after AR has left town.  I often space the calls out so that I can have at least one in every week day.  I still hesitate to take incoming calls, though, if it is a number I don’t recognize; and in that sense I am a victim to my hypocrisy.  At the very least, however, I have found a calm solace in the kind acknowledgement of another’s presence and imagining what they could look like with the sound of their voice.  Of course not all business which is transacted occurs between the same two people, and a tapestry of human interaction is woven in time.  In all of these interactions an anonymous relationship is created, and one very remarkable truth is given us: we become two people who engaged each other on this planet, at this time, and have proven with finality that we existed.

For the most part people are eager to assist, and the experience becomes a source of joy.  Alas, the fangs of spite can sink deeply into the tongues of man; those few who have been treated so ill throughout the day may unwittingly see that you become a statistic and a collaborator with the cruel.  There is an intrinsic element of causation, I think, when people act negatively in such a way, and I believe these people are quite good in their hearts.  Kindness begets kindness, but this is far from a universal policy; and its absence does not provide for a very user-friendly guide to interpersonal relations.  The world is, as such, a conundrum – a marvelous web of perplexities and complexities – sometimes mired in turmoil, hard on itself and growing detached.  I sometimes feel it all around me, testing me; as if the walls are peeling and the bare rooms have nothing upon which to place their décor – showing the pallor of their decaying splendor.  There is hope; through the disappointment of harsh words, there is shelter in kindness.

I believe that anger consumes the angry, making fools of us with retrospective rage.  The truth is that the nature of any given presentation that I can make of myself affects primarily my own heart.  When I used to get angry, the oppressor was my own heavy heart; and, oppressed, the wearied soul resides therein.   When I take the time to look back on some of the negative exchanges in my own life, it seems common sense that when I lose control of my temper that guilt acts as a strong adhesive; sticking the rage to you until it dissipates slowly over days.  Rage is a form of slow emotional suicide.  In gentle acceptance and peaceful words rest both solution and resolution.   Our life becomes composed of many layers of interactions, colored by our disposition.  While the composition of one layer may be inconsequential in the totality, it is quite significant when you learn that it colors your next layer.

Those who are full of joy have become valuable to me.  In my little room, hidden away from the rest of the world, I have begun to feel inexplicably grateful to those people who pick up the line.  At the end of each is another person, someone whose voice now lets me know there are more people on this planet.  It’s easy to take for granted, really, when there are people everywhere. But, as I grow wearied by time, I grow more conscious of the fact that each person has worth: the ignorant as well as the intelligent, the rude as well as the kind.  Perfection is something which eludes each one of us, yet as we make these peregrinations back to our homes and hearths it should never escape us; we too are the other person on the end of the other line.  We all have a beautiful face and name, we have likes and a hair color, we have a families and heroes, and if we choose to use it – we have a smile.

As people become rare in my room, it is easy to feel as though I am losing touch with the realness of people generally; becoming detached from their presence and tangibility.  When someone comes around, however, the natural rhythm presents itself as if there was no interruption of which to make reference.  Generally, I always feel well enough for a visitor; though this is not implied by the mountain of rejected invitations from those seeking to bring me back out of the woodwork.  It has come to the point that me leaving the home is, for the most part, a universally recognized farce or impossibility; an involuntary blockade imposed by failing lungs.

Though this is a built in scheduling conflict when exported to others, sometimes the company can come to me for a visit.   I am grateful, in ways for which there are no words, to those who find my company worth the extra inconvenience – to say the least.   When the people of the world are becoming something I am in love with as a totality, and have come to find a peace in interacting with a person regardless of the tones; the primary relationships I have built over the years become more precious again.  I am thankful each time I am given a chance to really wrap my arms around this idea and hold onto it for awhile.

Saturday last, I had an especially pleasant weekend visit from PA and EA; two of my favorite people, and the kind of people from which a light perpetually shines.  At times like those, I feel as though I must be the luckiest person in the world.  It really highlights the magnificence that is so overwhelming in the universe; some energy or magnetism, pulling people together as if it was the very purpose of our being – to be a willing participant in a collective joy.  And still, at the end of each day, we separate into our collective sighs and slumbers; eager for another shot at perceiving the world, yet praying that weariness can never win.  If I hold tight to a kind heart, the power of a small connection becomes the most pure means of surviving; torn asunder from a world constantly moving on without me.

The rhythm of interaction and the coming of another birthday, fit well within a life largely cyclical. This year, I can smell the fall air coming in my window again; the late night air ever more crisp, with that faint hint of a fire burning somewhere.  The largest portions of my days begin to find some resolution in the reliability of these evenings. Soon the leaves will begin their descent; embracing the aftermath of a hot summer, and falling forth from the trees of the suburban landscape.  Cyclical. Dependable.  This blog has been through an autumn once before, now becoming cyclical itself; embracing the season almost as eagerly as the leaves and their infinite turn.  This time last year we were preparing for a fundraiser, I was introducing you all to a webjournal called Breathe Easy, and hopefully all of us were falling in love with the world all over again.  There has been much cause for rejoicing in my life over the previous year; so much so that it stands unmatched by any negative influence.  But here we are, one year and one month beyond the evaluation and listing last August.

I grow weaker, by degrees, yet my health feels better than I would have imagined it could last year.  I was recently admitted to the hospital for what must be my tenth or eleventh cleanout this year – I have finally lost count.  As with every admission, however, there is a homecoming.  I have come out of the pounding my health has taken this year with only a little excess baggage.  In the end, this time, I was reactivated on the list and the infection I manifested the previous stay was not found.  It was a long summer, but the fall has finally come; I can revel in it once again.  I feel almost as if I had written this same thing last year at this time – I can almost see it happening in my mind.

“What more can you ask for in life than to be given an impossible challenge?” These are the inspirational words of Cory Booker.  Something to think about as I move forward, and my health and society become scattered.  But, when I do think on it, it seems that my challenge does not live up; my challenge is not impossible, and I am thankful for every part of my life.  It is the people around me, the people who believe in me, that empower me.  But what I find myself beginning to embrace quite eagerly, are the people who are not there for me in those capacities.  It should not take loneliness to make us learn to love every last part of the human condition; to make us see, finally, the beauty in every last human heart.  This life is composed like a beautiful symphony: organic, textured, and powered by the fact that each person plays a different instrument and a different part.

Update from Breathe Easy!

Hello, everyone! I hope this post finds all of you well and smiling.  Breathe Easy has not seen a lot of activity this month and I’m sorry for that, but the site is still active!   I had a pretty fast hospital turn around, and was back in after only a few weeks out.  I wasn’t feeling incredibly well overall at the time, so I put writing on the back burner for a moment.

In the previous post, “Rediscovering Jubilee” I had discussed to some degree the c. diff and the resulting status seven; placing me on inactive status for the transplant. I am pleased to report, so soon after the post, that I have cleared the infection and have been reactivated on the transplant list.  The next hospital stay did not see the infection return.  Now I simply need to read a bit faster so that I can finish all of the books I have sitting on my desk before this call comes.

At any rate, I am about finished with the next post – so I will have that up very soon – this weekend, if all goes according to plan.  Thanks for reading everybody, now picture me giving you a hug!

Love,

Gabe