The Men Who Don’t Fit in…

•September 25, 2014 • Leave a Comment

The Men That Don’t Fit In
-Hugh Antoine D’Arcy-

There’s a race of men that don’t fit in,
A race that can’t stay still;
So they break the hearts of kith and kin,
And they roam the world at will.
They range the field and they rove the flood,
And they climb the mountain’s crest;
Theirs is the curse of the gypsy blood,
And they don’t know how to rest.

If they just went straight they might go far;
They are strong and brave and true;
But they’re always tired of the things that are,
And they want the strange and new.
They say: “Could I find my proper groove,
What a deep mark I would make!”
So they chop and change, and each fresh move
Is only a fresh mistake.

And each forgets, as he strips and runs
With a brilliant, fitful pace,
It’s the steady, quiet, plodding ones
Who win in the lifelong race.
And each forgets that his youth has fled,
Forgets that his prime is past,
Till he stands one day, with a hope that’s dead,
In the glare of the truth at last.

He has failed, he has failed; he has missed his chance;
He has just done things by half.
Life’s been a jolly good joke on him,
And now is the time to laugh.
Ha, ha! He is one of the Legion Lost;
He was never meant to win;
He’s a rolling stone, and it’s bred in the bone;
He’s a man who won’t fit in.

I Can Feel It…

•August 17, 2014 • Leave a Comment

I can feel it…
I can feel it….
Like an itch in the center of my mind.
A need. A hunger. A driving desire.
Unfocused fear and anger coalescing into
An unthinking force of nature.

Every day it creeps into thought,
An unheard whisper to my soul.
An unspoken request in my mind.
An incandescent desire,
Burning its way through my will.

Silently it sits there
Within the reach of my broken hands,
As if mocking my self-will and determination.
Knowing all it has to do
Is wait for the petulant crawl of time to pass.

Like a broken steel fang,
It hungers for my flesh and blood.
Impatient with desire,
It seem to call out to me at every turn of my head.
It begs to taste me, test me, try me.

I can feel it…

But you are so fat!!!!

•May 9, 2014 • Leave a Comment

But You Are Too Fat!

“If you just lose weight…”
“IT is all because of the weight…”
“Are you aware you are overweight?…”
“If you would only exercise more…”
“You need to eat healthier…”

Sound familiar? Time after time, I get the distinct impression that many doctors and nurses cannot see beyond my weight. Yes, I am “obese”. I always have been.

It never kept me from being extremely active, however! Backpacking, camping, fishing, hiking, carrying furniture, cutting and splitting wood, and any one of a hundred other activities one can do in living one’s life.

And then the pain struck. Suddenly even walking was difficult. Every day became a battle to merely keep moving. More and more time was spent curled up in a ball, or laying on my side in bed. More and more nights spent the same way. It has been a losing battle.

Unfortunately, because of the pain, my activity level is far below ‘sedentary’. 50 steps a day. Maybe. So I gained about 70 pounds over ten years. And plateaued at 365-ish pounds. And there I stayed. I cut out carbs. I shrank my portion sizes drastically. Nothing mattered. Not being able to move meant that in order to lose weight, I would just have to stop eating. Period.

This was proven last year when they took away all of my pain meds over the course of 3 weeks. From 400 mg of morphine a day, to NOTHING. I lost 60 pounds in about a month and a half. Better than a pound a day. The effect on my pain? NOTHING. If anything, I hurt *worse*! (Possibly due to the lack of any ‘insulation’ around my damaged left hip/pelvis.)

They restarted the minimum possible pain meds. Just barely enough to keep me from opening a vein. Just. (Don’t think it doesn’t cross my mind daily.)

So, after waiting for the better part of a year to die, I have decided to let them hack me open yet again. They will cut my stomach away and leave a small tube in its place. It really won’t change my eating much, as I don’t really eat more than a few bites at a time as it is.

I feel little need to feed this broken body that is holding my spirit hostage and in pain…

It is what it is.

I am so desperate for better pain relief I am willing to let them cut pieces of me away.  To let them basically make my body starve itself.  They call this kind of ‘treatment’ “Malabsorption surgery”.  It is implied that the only reason you are overweight, fat, obese, is because you eat too much.  Because you have no self-control! 

R-i-g-h-tThat is what it is… *Eyeroll*

So in a month I have an appointment to start the ‘program’ which should culminate in them cutting away my stomach. Then I should lose weight.  Should.

I wonder just what they will say when they can no longer hide their refusal to treat my pain behind the image of my weight?

I just wonder

“Why are you still alive? What keeps you going?”

•February 8, 2014 • 4 Comments

Saturday, February 8, 2014

Why the Hell Do I Go On?

My therapist gave me ‘homework’ a short while ago.  I have thought about it for a while, mulled it over, and here is my response:

Why haven’t you committed suicide?”
or
Why are you still alive? What keeps you going?

Tough questions.

As many of you know, I lost most (all for a time) of the pain medications that I use to brace against this terrible pain I live in.  Every jagged breath is salted with pain, and every heartbeat is tinged with agony. Day after day, hour after hour, and minute after minute; the pain is there.  Malevolent. Cruel. Unyielding.

A year and a bit ago, I put the barrel of a loaded gun in my mouth in preparation for ending my life.  I was saved by a Private Message asking me to give the cause of those like myself without pain treatment a day. Maybe two. I figured one day wouldn’t *really* matter….
It has been a little over 400 days since….

People in pain in this country are in dire straits.  Finding a doctor to treat chronic, intractable pain is becoming harder and harder to do, and even if found, there is a very good chance that they will not be able to purchase their medicines even if they get a scrip!  It is a nightmare!

No one WANTS to be in pain.  None of us WANTS to take high dose opioids.
We do everything in our power to fight on our own, and only break down to see a doctor as a last resort. As a last cry out for help before the Pain Wins and we end our lives to stop the agony.

To have them refuse to treat us seems like confirmation that our lives are not worth anything!  Like we don’t matter!  Like we somehow deserved our fate!

NOTHING COULD BE FURTHER FROM THE TRUTH!

So I do what I can to reach out to the thousands of people left to cry out in their pain, alone, with no one left to hear their faint cries.  Sometimes just an acknowledgment that people are listening can be enough. Sometimes it isn’t, to our society’s loss.

Suicide rates among pain sufferers are WAY up. Astronomically.
Illicit drug use is way up as well, as people seek *some* kind of relief.  (Heroin use among those over 40 yrs of age has more than doubled in four or five years… that should tell you something.)

These aren’t ADDICTS, they are people in PAIN, desperate for just a few moments relief!!

So that is reason one, I guess.

Second, is the woman I love.  She has been by my side through everything, including this terrible journey of the past year and a half.  Over the days, I have lost more and more of my mobility. More and more of my strength. More and more of myself.  I feel like an empty husk. Like a faint glimmer of who I was or could be.

It would be oh so easy to slip away into the ether!
To fade the rest of the way into the darkness!
To give up and let the pain take my final breaths.
To finally find relief!
So easy…….

But I made a promise to my dearest Love. My best friend.
I promised I would try and keep fighting, and if I felt myself ready to take that final step, I would tell her.
I would give the system one more chance.
(The same system that has slapped me down at every turn. That has betrayed my trust and caused me untold eons of misery. That system.)

But I owe her.  So I keep breathing. I keep trying. Long past my Point of No Return…

As a man of Faith, I used to think that no believer in Christ could really commit suicide.  Now I know better.  My God and Master are loving enough to understand that every person has their breaking point. Every person has their limit of endurance. Their limit of agony.

I have had to so withdraw from the world, that the only ones to be effected were I to cease breathing would be my immediate family.  I cast no shadow. I affect no lives. I effect no response from the society I live in. I no longer count. It is what it is. *sigh*

The third reason?
Anger.
If I die with narcotics in my system, the DEA will list my death as Drug Related and will use it to continue to create a false narrative that the drugs themselves took my life.

BULLCRAP!!!

IF I COULD GET DECENT MEDICINES, I COULD ACTUALLY, I DON’T KNOW, LIVE MY LIFE LIKE A HUMAN BEING, NOT AS THIS BROKEN… THING!!!!

Grrrrrrrr.
Sorry.
I am a little angry.

I no longer “Hope for a brighter future.”
I have no hope left.
I know, as certainly as the sun rises every day, that the pain will take my life.  Maybe not today. Maybe not tomorrow. But soon.  Almost certainly within the year.  Or the season.  I can feel it. Like some giant clock beating in the back of my mind… SOONSOONSOONSOON

My wife carries our hope. I just don’t have anything but tears and numbness left. And nothing but time to stare out into that frozen darkness that is calling my name…

“Soon….”

The Silent Epidemic

•February 7, 2014 • Leave a Comment

There is a pain epidemic in this country. Actually there is an epidemic of people not being *treated* for pain issues.  The DEA’s misguided war on Pain Medications has caused many hundreds or thousands of moms, dads, sons, daughters, and even grandparents to resort to anything they can find to fight the agony.

In the past few years (since around 2007 when the DEA *really* started turning the screws on pain meds and the doctors that prescribe them) there has been a sharp uptick of people over 40 who *begin* using heroin.  Think about that. They haven’t used it before and just suddenly start?  For no reason?  Not hardly.

Just what would it take for a normal human being to *start* using heroin.  What kind of unbelievable circumstances would it take?  What terrible conditions would or could do such a thing?

Fact is, thousands of patients have been left to scream out alone int he darkness.  left alone to face insurmountable odds and try and survive. Left alone to rot and die. And no one seems to care!

The DEA labels *every* death where there is opioids in the bloodstream as a “drug-connnected death”. In other words, “Just another junkie overdose.”  It doesn’t matter *what* caused the death, if drugs are there, it was an overdose death. NONSENSE!!!

People turn to alcohol or heroin because it is the only way they can be *HUMAN*, even if only for a few hours. The pain is that bad! YES IT IS THAT BAD. Maybe even WORSE.

NO THEY CANNOT JUST “Suck it up” and “Move on”!  The PAIN wins. Another soul fades into the black.  These unique, strident, valuable persons disappear from amongst us.  And we are all poorer for it.

The DEA’s War on Pain Medicines has REAL VICTIMS.
I am just one of its MANY, MANY victims.

Thinking the Unthinkable Thought

•January 21, 2014 • 2 Comments

January 21, 2014, 2:47 AM

There comes a time in the struggle to maintain our self identity whilst being hammered away at by constant pain where “The Unthinkable Thought” begins to form.

It isn’t anything substantial at first,  more of a nudge at the back of your mind than anything substantial. An itch that you daren’t think about or scratch at.  It sits there biding its time, because it knows that in the end, you will have to come to terms with it.

“Are you ready for me yet?”

So you battle on, fighting that terrible war of attrition where everything you are and have done is burned away one dream or memory at a time.  All sacrificed to the Need of the NOW.  The pain eats away at your joy, hopes, and dreams and devours them without any relief in sight.  You slowly begin to feel hollow inside, or so thin that a good breeze could blow you away.  And still the pain comes. And the thought waits…

Years, sometimes longer sometimes shorter, go by and this dark passenger in the back of your mind begins to ride along in all that you do or are.  It sits patiently, biding its time because it knows there is no answer to its unasked question:

“Is it time yet?”

“Is it time for all of this pain to finally stop?”
“Is it time for this book of your life to come to an end?”
“Are you ready yet?”

You refuse to look at or think about it.  You try and keep your mind busy with other things. You fight for some form of activity to keep your mind from that darkest of corners.

But late at night. In the deepest of night, when all you have between you and that questioning ..thing … is tears and your heart-beat, you hear it whispering ever so softly:

“Are you tired enough yet?”
“Are you brave enough yet?”

You war on, beyond any rational point of return.  Slowly but oh-so-surely you lose the battle with pain step by agonizing step.  Sometimes there are faster losses, like when you are denied aid. Or when your medicine finally runs out.  When the doctors refuse to hear you any longer and tell you that living in this horrendous pain is “for your own good.”  When you look ahead and see nothing but even more terrible dark nights alone, with nothing between your naked soul and that searing agony.

And still the voice calls out softly,
“Have you had enough yet?”
“Will it be soon?”

You isolate yourself away from those who cannot understand your pain, or simply stop trying to explain.  You lose friends and family because the pain comes between you and those ‘common ground’ activities that keep us bound together.  Your pool of people in your life slowly shrinks to just a few, or one. Or none.

You seek out the help of professionals who try and help you fight a rear-guard action against that dark passenger, but in the back of your mind you finally have to admit, “This pain is going to cost me my life.”  Maybe not today. maybe not tomorrow, but eventually.  And over time, you become okay with that.  You go through the motions. You learn to say and do all the right things.  But it is all puppet theater.  You know. You finally know.

Heavy with that knowledge, you fight for every day. You tell yourself “Not today. Or tomorrow.” and somehow that has to be good enough.  But you know.  You grasp at any small success or possibility, with the realization that you will probably just be disappointed, but you have to try.  And you do try, but eventually you just become too weary. Too exhausted.  Too tired.

The Pain finally Wins.

So you sit in the dark, alone with that lonely passenger as your only companion.

“Are you all set yet?”
“Have you finished your plans yet?”
“Do you have all of your papers and such organized yet?”
“Are you ready to stop dragging those you love down with you yet?”
“Is it that time yet?”

“Are you ready to end your life yet?”

And through a face with cold tear-less eyes, you quietly whisper to the lonely darkness, “Yes.”

The Trap: Living With Chronic Pain

•January 18, 2014 • 3 Comments

January 18, 2014, 6:22 PM

I have tried repeatedly to come up with some way to describe those hidden aspects of living with chronic intractable pain for those that have never experienced anything like it.

Let’s try this:

One day, while you are going about those daily activities that make up “life”, you step on a hidden bear-toothed trap.  It closes with a CLANG! And sinks its jagged, rusty teeth deep into the skin in your upper thigh on your right leg.  You scream at the instant agony, fighting back tears as you try and find some way to release those agonizing jaws.  Everyone else seems very concerned at your predicament, but seem to look confused and unsure about what to do.

Eventually, with your loved ones help, you end up in a doctor‘s office for treatment.  They ask you all of the routine questions like if you smoke or drink, and take various blood tests.  The doctor finally comes in, examines your leg and shakes his head slightly before giving you “the talk“.

“Mr Everyone, I see that you are presenting with severe upper leg pain.  You say that you caught your leg in a trap? (He looks at your leg again.) Um, I don‘t see any evidence of that.    Perhaps the pain is merely in your mind. Stress can do that.  Let me recommend a good counselor.”

You listen on in stunned silence, until he finishes, then grab his sleeve and point while shouting, “IT IS RIGHT THERE! RIGHT THERE! THAT BIG RUSTY THING STICKING OUT OF MY LEG!!”

The doctor looks at your leg once again, then back at you.

“I see no trap. Either you are just trying to get pain meds, or you have something wrong in your head.”  He coaches the words differently perhaps, but that is general gist of what he says.  He tells you “You are too fat. You need to lose weight. Here’s the name of a few counselors you might consider seeing.”

You think he must be insane, and it isn‘t until later that night, while you are cradling your crippled limb, that you realize he truly cannot see the trap.  And neither can anyone else!!

In shock and desperation, you try doctor after doctor, and treatment after treatment, only to find that NO ONE CAN SEEM TO SEE THE RUSTY TRAP STICKING OUT OF YOU AND KEEPING YOU IN AGONY DAY AND NIGHT.

And then you get scared.

You try everything you can think of to try and live with the trap embedded in your aching flesh, but slowly lose all normal function.  When you go to sleep, it is with the knowledge that you will wake once more to screaming agony.  Your friends drop away as you are unable to keep up those activities and interests that brought you together.  You lose your job. You lose family.

The Bear Trap affects every aspect of your life. Even taking a shower is now difficult.  Every step must be planned in advance, and you never know one day to the next what you are going to be able to accomplish. Family dinners, visits with friends, and outside activities fall in the wake of the pain.

Well-meaning friends and family tell you to just “Get over it” and “Think positive thoughts”.  You are told you should try and be happier and not so depressed all the time. You want to scream and shout at them that you are depressed because YOU HAVE A TRAP IN YOUR FLESH!, but no one seems to listen.

They cannot see the bear trap.

Your religious friends will tell you ,”You should just have more faith.” or “You should pray/attend church/tithe more.”  You try going to worship for as long as you physically can, but eventually, even that has to fall by the wayside.

You begin to contemplate suicide.  After all, every person has their breaking point.  It has been well known to academics studying it, that torture often fails simply because at a certain point, the tortured soul will confess to anything just to make the torment stop.  Unfortunately, the pain doesn’t even ask a question you can answer!

If you are lucky, you finally find a pain clinic or doctor that will at least treat your pain with something.  By the time you get there, you have spent YEARS trying to survive the pain.  They get you set up on pain relief treatment and seem to truly want to help. For a while.  You agree to unbelievable contracts merely for access to something that will buy you a few hours relief from some of the pain.

Then, under the new DEA non-guidelines (regulations that even the doctors don’t get to see) where  if *any* adverse effect happens while you are taking pain meds, the doctor can now go to prison, you are quietly cut off from treatment and shepherded into the dark alley to fend for yourself.  You rail at the establishment and medical community to try and make them treat you, but they refuse.  You seek other doctors only to find that there are none willing to take on the risk for a single patient.  These doctors have families too, and actually treating high pain levels appropriately could cost them their careers and freedom.

They can see the effects of the Bear Trap, but are too afraid to treat it.

Or, your ‘treatment’ continues and you still get the paper scripts for your MEDICINE, and you find that you can no longer fill them anywhere, for any price.  The pharmacists and others refuse you and label you a ‘drug-seeker’.  They say they have none in stock, or want to charge yuou 10 TIMES what the going rate is, and you would pay it if you had anything left to sell! Unfortunately, you have nothing and are left with nothing.

They cannot see the bear trap either, you see.

At some point in this  terrible thing that your life has become, dark thoughts enter your mind.  You begin to wonder if just ending your life is the answer.  You combat them with therapy, feel-good techniques, meditation and anything else you can throw at the pain to keep away the realization that this pain will last to your final breath.  You look at the therapists, psycholgists, and psychiatrists and want to scream “Of course I am depressed!! My leg is caught in this awful Bear Trap!”  But they cannot hear that.  Some pill or new therapy is the solution that might work!

None of their therapies are effective long term because They cannot see the Bear Trap.

Eventually, after years of screaming alone in the dark with no one but the flies to hear you scream, you give up.  These biological machines we call bodies just aren’t that hard to stop. The bitterest thing of all is having to face the fact that the current DEA clerks will then use your death to further humiliate and stigmatize those in pain.  To further punish those hurting people for some perceived crime against our society.

Because they don’t WANT to see the trap.

 
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