Gene's Writings

The Miserable One

In a world of checks in balances sometimes there are questions that seem to have answers so incomprehensible that my mind just simply cannot conceive the unique answers that thought can provide.  I ask myself many times over why it is this path of pain and sometimes complete loneliness has been cast upon me.  The path of physical pain that has had such a consequence in my emotional and spiritual life as well.

I don't look at things as being a setback or trial as some would have it.  I feel like that those who talk in such manner don't have a clue about themselves or the intuition to begin to understand what a person who suffers from disabilities goes through.

I can say from experience that a completely different attitude about life, and what it means comes to the surface in the mind.  Even those with who you have close relationship can't even begin to understand the frustration, and sometimes anger that falls in the mind of those who suffer.

I have been told that because my situation manifested itself as I got older and wasn't either born with it, or it didn't happen at an early age it is more of an adjustment for me to make.  I can't say that it true because I believe that those who have came up through life with disabilities have the same frustration, dreams, and hopes that any other human being has.

I have seen those that have grown up with physical disabilities and have become successful in spite of it.  I congratulate and respect that.  What I am having difficulty with in my own life is the fact I spent so many years polishing  the skill of my chosen trade that now I have nothing I can find that I can immerse myself in to either make a living at, or occupy my time in a constructive manner.  Nor with the physical pain is executive thought able to run it's full measure most days.

At the time these words are written I find myself searching for something that I can do that is constructive and meaningful.  Every time I decide I think I feel good enough and mindful about looking for some kind of work I am reminded why I can not.  The pain crops in and tells me "No you are not going to go out in the world"

How do I describe what I feel?  Even these words of effort doesn't make it.

In some ways I can be content.  In someways I feel a sort of anger.

Again it comes full circle to the checks and balances the universe has to offer.
I am frustrated about my own personal limitations yet at the same time I can be content with who I am.  I have the desire to be a more productive person.  To make a difference.  The problem I wrestle with is how do I go about it.

I get a kick out of these do-gooders that tell me I need to get off my backside and get with it.  That I should be jumping up and down and frothing at the mouth about life and be giddy and aggressive.  What do they know?

I see this crap on TV about this or that program to help overcome.  Self help groups and religious idiots that tell me I should be going out there and getting life by the balls.
I hear that and I whisper a curse to them saying that I hope they get into some kind of accident and become so tormented with pain that they shut there mouths up once and for all.

Only those that are in the same situation can comprehend the mind set of someone like me.  If that sounds egotistical then so be it.  But I believe those that suffer from chronic pain or other disabilities are an elite part of our society.  The courage and inspiration of such people is far to often under the radar of people who are "normals" going about there daily lives.

I personally have been brought down and humbled by the affliction of degenerative bone and joint disease and a host of other things that has been the source of the chronic pain that has become such a part of me that I call it a curse and yet a blessing at the same time.

To set here and underrate the courage of those who are disabled would be a crime as I have come to see the courage, tenacity, and inspiration of people like me and who have disabilities in nature that leaves them totally incapacitated.

One cannot begin to understand how it is when all you can do is lay there in bed with tears rolling out of your eyes because of the pain.  To be suffering from nausea to the point that you are in the bathroom more then out of it.

I am at the point where I simply have no wish to even call this pain anymore.  It is far beyond words can describe.  Pain does not fit.  Agony does not fit.  Suffering does not fit.  Call it an affliction or what ever, but the term chronic pain doesn't even begin to master it.

I have the utmost respect for anyone...  and I mean anyone, who has a disability, and tries with all there heart and soul to carry on with even just a basic routine in there daily life.  With this in mind I would like to touch on a equally and yet still just as an important topic of my mood.

In the past year of my life I have had not only the privilege, but also the honor of becoming acquainted with and making friends with wonderful people of all sort of disability.

Some of which are quadriplegic and have absolutely no feeling from the neck down.
In this growing friendship we have come to discover that even though we are totally at the opposite ends of the disability spectrum we are very much alike with the emotional pain and mental anguish that fate has cast upon us.  These individuals can not even feel there own breathing let alone be able to stand up and look out a window and have the gift of seeing a bird fly across the sky, take a walk in the woods and enjoy mother nature with all her wonders, and more sadly, never know the reverence of a lovers embrace.

With the disabilities being so totally opposite we have come to discover some very important issues.  We have come to learn that we are both prisoners of the mind.  Myself a prisoner of pain in which the self discipline of endurance stretches the imagination.

This friend of whom I speak of, it isn't any kind of pain that manifests itself but the total lack of any sensation at all.

It is difficult to think of not being able to feel your limbs in any way.  The very same limbs that I agonies over.

Not being able to feel yourself breath.  or your heart beating in your chest.
I can not imagine, try as I may, begin to understand what it would be like to not be able to move my fingers.

To have lost all sensation of touch and movement is absolutely and completely foreign to any kind of thought that my imagination can comprehend.

Through all this we have come to discover a common ground that we walk on and the soil that makes up this ground is the soil of loneliness.  I use the word loneliness because because no matter who you are and the friends and loved ones you have around you, the journey is still our own.

In my solitude I dream of not having any pain.  I dream of how it would be like not to be burdened with the sacrifice my body is make to the mind.  The constant anger that continues with relentless effort.  The continual beating down the mind has to endure. 

I am as much a prisoner of this loneliness as the stillness of the body can be to them.

To have watched our dreams in some cases shatter in a instant, or slowly melt away it really doesn't matter.  To have everything you worked so hard for, taken from you.
Regardless, we both have our own prison.  Loneliness and pain, Loneliness and total emptiness.

That in which i endure is so much the opposite that to have just a few hours of such a sensation would be a welcomed gift.  Yet at the same thought has been discussed with me although I do so not wish this upon anyone.  Would it be that we could change places I have to wonder how long we each could endure the nightmare in the exchange.

What kind of tricks would our minds play on us?  What would happen to us if we were to go from one extreme to the other in a instant?  This topic could be the interest of endless hours of discussion.  By no means do I speak in a jesting manner nor do I talk in any kind of pity or sympathy.

On the contrary as I talk with anyone who has a disability of any kind I do so with respect and courtesy.  I do my best to treat each person the dignity they so rightly deserve.  With the gamut of all the limitations, disabilities and afflictions there are out there in the world, I have to ask the question.

Who is the miserable one?