Monday, March 20, 2017

CHAINED

























Chained to the beast,
Who would rob me of my soul,
Haunted by this nightmare,
Who can make me whole?

Sentenced to this fate,
But I have done no wrong,
My captor, my companion,
He appears to be so strong.

Trapped in this dungeon,
While the monster rages on,
He will surely slay me,
When his taunting’s finally done.

How can I defeat him?
Release my daunted soul?
Who is there to rescue me,
To unbolt the prison door?

I fear my days are numbered,
His looks have grown so cold,
I’d like to ask his reasons,
But I am not this bold.

I know not why he chose me,
Why this burden I must bear,
But there is little question,
I must soon escape his lair.

My body falls to ruin,
But that’s of little concern,
The greater battle blazes,
Reaches the point of no return.

The beast inflicts great sorrow,
His misdeeds do take their toll,
But though he ravages the body,
He must not reach my soul.

For he may hold the power,
To bedevil, inflict great pain,
But he must not persuade me,
That my life is lived in vain.

Shackled to my tormenter,
But inadequate is his reign,
My soul is mine alone,
And my choice it does remain.

Confined by the walls which surround me,
But my spirit can surely sing,
No cell can tether my soul,
Nor the hope to which I cling.

Chained to the wretched demon,
Who seeks only to devour,
But he knows not the day,
Nor the minute, nor the hour.

His power is but an illusion,
My fate transcends his command,
The key is beyond his reach,
But within the grasp of my hand.

My oppressor, my constant companion,
Unleashes his bitter fury,
He rails and rages against me,
But my fear, at last, is buried.

Though bound to the beast within me,
My spirit’s, unrestrained, free to soar,
This body is enslaved in his Hell,
But my fearless soul has been made whole.

Tuesday, March 7, 2017

BEYOND THE GARDEN GATE

Saved from Flickr.com


Just this side of the garden gate,
Much sadness to behold,
Left to contemplate my fate,
A plot where hope grows cold.

Jealous minds and hardened hearts,
The weeds that choke and bind,
Haughty and self-righteous tones,
Monstrous trees which block the light.

Souls are blackened by schemes and lies,
Which nurture fruitless and barren soil,
Where hate and envy flourish unchained,
Sow discord, hatch egregious turmoil.

The steely glances and belittling glares,
Take root in once tender sprouts,
Turn the beauty that might otherwise exist,
To misery, heartache, and doubt.

Arrogance, egoism, and blatant conceit,
Like shrubbery and underbrush abound,
Dream of finding a soft patch, my Eden,
But to this graveyard, I am desperately bound.

Towering walls and unyielding stones,
Shield the garden virtuous and true,
Defy my futile, half-hearted attempts,
To escape this pitch-black, cold tomb.

Weak I grow and fading fast,
The sun’s bright radiance escapes me,
But in the rubbish which mires my feet,
A vine appears to teach me.

Scales the walls, and under the gate,
It creeps, winds into my darkness,
Hearty and hale despite the night,
Grows nearer – “Come,” it harkens.

Follow its trail from my bitter dead plot,
Face to face with the glorious garden gate,
The vine, it beckons, “You hold the key,”
Swing the door – a path narrow and straight.

Beyond the gate, brimming with brightness,
Vibrant colors, lush growth do astound,
Fresh welcomes, open arms, joyous hearts,
Lively blooms which are everywhere found.

Approval peeks from the cracks in the stones,
Encouragement and praise line the walkways,
Gentleness and hope scatter the grounds,
Their flowers form grand, bold bouquets.

No immense, looming trees to block out the sun,
No weeds strangle the souls of the living,
No scornful judgments which stunt their growth,
Only mercy and tender thanksgiving.

Just outside the gate, bleak and foreboding,
The world turns so withered and dead,
But in the garden, radiant and blossoming,
Souls take flight; they are delivered from dread.

Saturday, March 4, 2017

CHOOSE TO RISE

The mood in my Gastroparesis support groups is somber, to say the least. I am reading quite a few posts from people trying to find a way to move on from their "past" lives -- the ones they lived prior to diagnosis. This is a difficult step. It requires much soul-searching and self-evaluation. I often find myself longing for that former life, the one that seems now as if it existed in another world, but I cannot go back, and I think my mind sometimes paints those days just a little rosier than they perhaps were. In any case, I struggle every day to find my place in this new post-diagnosis world, as do nearly all the members of my community. This is not the life I would have chosen for myself or for any of them, but it is the hand we have been dealt, and we search to find the positives in this dark, cruel new reality where our very existence is threatened. There is still good in this life, but it takes a different form, and, in the darkness, it is a little more difficult to see sometimes. But there is light, and there is hope, and if you continue to seek it, you will find it. 


Thursday, March 2, 2017

TIME TO GO?





**Note: Today's blog is a post on my Facebook wall.  I include it here because I fear it will not be available to my community members (or me) after it is actually posted, and I wish for my group members to be able to see my final plea.**






My salute to the Facebook Nazis this morning – Day 6 of my punishment under an unjust, arbitrary dictatorship. Generally, if I wish for people to follow the rules, I let them know what the rules are. Punishment for neglecting to obey regulations and stay below limits which are not clearly spelled out is neither effective nor fair. It serves as no sort of deterrent since I am unable to discern which specific actions led to my imprisonment.

I have tried my best to obey the guidelines and edicts of this format, but for the life of me, I cannot read the minds of the Facebook "powers that be." So, I find myself unable to post in my own Gastroparesis support and advocacy groups – some of which I created and some in which I merely administrate. Why? I do not know. I uploaded a file to several of my groups, and my best guess is that this somehow triggered automatic warnings. I do not understand how uploading a file in my own groups, where people join and remain at their pleasure, with no requirement they stay if they find it displeasing, can be an issue for Facebook.

I have attempted to contact Facebook in regard to this in every way I know to be possible, but I am met with silence, or worse yet, form replies that offer no guidance or assistance. I will likely never receive an explanation as to why I have been restricted and will surely receive no notice of how long this punishment will last. I will be offered no grace, no reprieve, and no pardon for my clearly serious crimes. I am at the mercy of a not-so-benevolent tyrant.

Facebook owes some serious consideration to my appeal, as I likely represent the views of countless others.  Furthermore, Facebook needs to take a good, hard look at how it views its non-paying clients who, though exposed to endless advertising, clearly have no rights and no say over how they are governed.  We are potential customers for Facebook’s advertisers, who bring many of our friends to this forum and create a market for their paying clients.  But we are also human beings worthy of respectful and fair treatment.  I am fairly certain there is technology available that would allow Facebook to more perfectly distinguish between “spammers” and “bots” and genuine human beings.  If that is the main concern, I have repeatedly attempted to allay fears.  I have used every means available to me to try to reach those in power and establish just that – that I am indeed a human – but my appeals are ignored.

I have been a Facebook member for nearly 10 years, and I have served in the groups for about the last three.  I have tolerated this ill-treatment for quite a long time because I love my friends here, and I am quite dedicated to my community and my groups – but there are limits to what I will allow myself to endure. I realize that by posting this, I risk having my account permanently disabled, and I regret that this may be the ultimate outcome. I hope Facebook does not choose this course of action. I do not want to leave you all, but I cannot function under these circumstances. It is stressful and frustrating – and, in the end, I cannot be of any use or value to you when I cannot post even the most basic information.

My purpose in life for the last three years has been to do everything I can – as much as I can – to advocate and spread awareness for our Gastroparesis community so that we may be heard and recognized, and it has been my most treasured delight to serve and assist all of you coping with the devastating physical, emotional, mental, and social aspects of this cruel illness. It has been my fondest joy to share in your daily life, both the struggles and the small victories, and to, in turn, share the most private parts of my life with you. I love you all, and that will not change.  I do not know how to thank you enough for the kindness, friendship, and support you have shown me.  You have truly changed my life, and for that, I owe a debt I can never, ever repay.

Should my account disappear, please know that I did not exit willingly, and I have not abandoned you.  I will continue to work on our behalf outside of Facebook should it no longer be an option. I have a life and viable alternatives, and this may force my hand to pursue these. Should this occur, Ms. Emily Randolph Scherer, Ms. Cheryl Lynn Raudebaugh, and Ms. Freda Sullivan will continue to serve you in our main and sister groups, and Ms. Trisha High Bundy and Ms. Deb Shrader-Trotter will maintain operations in our Fighting for Change groups.

You have my deepest and most sincere apologies for what now may well occur.  Please know I do not wish to leave, but I see it as almost a foregone conclusion at this point. This latest ban might not be permanent. I do not know; perhaps it will be lifted. But even so, how long before I am in this predicament yet again? It is an intolerable situation – and, unfortunately, it does little good to voice my objections.  I am ineffective, unproductive, and useless to you under these circumstances, and I fear I cannot alter my behavior enough to meet Facebook's enigmatic requirements.

Again, I have no plans to willingly depart, but I believe you deserve a forewarning about what likely lies on the horizon. I must look myself in the mirror each morning and live with the choices I make. I am not a person who willingly tolerates mistreatment, and I will champion what I believe is right every time, regardless of the consequences. I speak out, stand up for myself – always have – and if that means my account is disabled, then so be it.  I can hardly bear the thought of that, but I will not stand by and pretend this is reasonable.

*********************************************************

Website: www.curegp.com

Twitter: @MelissaRVH

Google+: plus.google.com/u/0/+MelissaAdamsVanHouten




E-Mail: gpfightingforchange@gmail.com

Tuesday, February 21, 2017

GUILTLESS

I have never felt guilty for being ill; yet, I see so many in my Gastroparesis support groups who struggle with this issue, and I cannot quite grasp why this is the case.  I can understand feeling frustrated or sad because of the limitations this illness places upon us, but guilt is another matter altogether.  Guilt implies that the person living with the illness is somehow culpable, responsible, or deserving of blame for the effects of said illness, and this is most certainly not the case.

Yes, our lives have been altered, perhaps forever, by this cruel, unforgiving disease.  Many of us can no longer perform routine chores, run errands, participate in the activities we once enjoyed, maintain employment, or reach once easily attainable goals we set for ourselves pre-diagnosis.  This is reality.  It is a consequence of our illness – but it not an act of the will.  In other words, we did not ask for our illness, we did not cause it, nor do we welcome it, embrace it, or seek to perpetuate it.  We did not fall ill because we are being punished for some wrong-doing in our past or because we are somehow so detestable that we “deserve” this disease.  Bad things happen; they just do.  They happen with no rhyme or reason and are the result of causes and forces that are often unknown to us.   

It stands to reason, then, that if we are not to blame for our illness and all the restrictions that accompany it, we should not feel any sense of guilt.  Yes, I realize that medical professionals, employers, family members, and friends sometimes behave as if it were our fault and do their best to cultivate our feelings of inadequacy and shame.  They expect us to behave exactly as we did prior to diagnosis, and they are most unforgiving of any perceived failures or shortcomings on our part.  But their opinions are not fact, and we do not have to believe these misguided notions. 

Hear me loud and clear, please:  YOU ARE NOT TO BLAME FOR YOUR ILLNESS!  You did not cause it, and you cannot wish it away, nor will it away, nor always regulate its adverse effects.  The limitations are real.  They exist.  They are not all in your mind, and they are not under your control.  You are not lazy or worthless or somehow “lesser” because you cannot meet some unreasonable standard of perfection set for you by the healthy people in your life.  Your illness will not go away if you ignore it, attempt to hide it, try harder, or pretend it does not exist. 

Now, I am not suggesting that those of us living with chronic illnesses such as Gastroparesis simply lie down, accept defeat, and stop striving to achieve.  I am not implying that we should give up on our dreams, our goals, our aspirations, or our hopes.  I am not endorsing an approach whereby we stay within our comfortable boundaries and never test the limits.  I do this every day.  I push myself beyond what is sometimes reasonable because I wish to remain independent, unfettered, and feel a sense of “normalcy” in my daily life.  It is good to push, I think – but it also necessary to recognize that your body and your mind can only be stretched so far before this behavior causes genuine harm. 

What I am suggesting is that you are sick, genuinely sick, and you are doing the best you can.  Give yourself some credit!  You are surviving despite your many hardships and challenges; despite the unkind words uttered and foolish beliefs held by those who have not lived a single day in your shoes and have no idea what you contend with; and despite the cruel physical, mental, and emotional toll your illness takes. 

You owe no apologies to anyone.  You are strong – fighters, warriors – and you should be proud.  Refuse to believe the lies that would keep you in the dark pit of despair and hopelessness.  See them for what they are – misguided, untrue, foolish notions that should be summarily dismissed and cast off.  Lose the guilt.  Stand up and speak up for yourselves.  You are valuable and worthy of respect just the way you are – limitations and all.


Thursday, February 16, 2017

WHATEVER HAPPENED TO GOOD OLD-FASHIONED OUTRAGE?

** A brief note regarding today's blog: I have encountered many dedicated, compassionate physicians, policymakers, and other players in the healthcare field since being diagnosed with Gastroparesis in February 2014.  There are those who work diligently to improve our very flawed medical system, who are committed to providing excellent medical care, and who support research and other initiatives designed to improve the quality of our treatments and our healthcare system in general.  This post is not directed at those kind souls.  But despite the efforts of those who would better our circumstances, my community remains in crisis. Unfortunately, there exist in the medical field many who do not understand the serious nature of their work and underestimate the damage they inflict on my community.  This negligence must not be allowed to continue.  I speak for those in my community who are (for countless reasons) unable to speak for themselves.  Our voices must be heard! **
















Please allow me to share what I witness in my Gastroparesis support groups every single day. A typical post goes something like this:

"I am scared. I am dehydrated and feel like I am going to faint every time I lift my head. The room is spinning.  I have not been able to eat or drink anything for days now.  It has gotten to the point where I cannot even keep down sips of liquids.  I am in so much pain.  I just want the pain to stop, and I want to be able to eat again.  I think I am going to die, but I do not want to go to the ER because they will not do anything to help me. They will just mock me, call me a drug-seeker, and send me home; then, I will have a huge medical bill and I still won’t feel any better."

My group member’s local GI knows little about Gastroparesis – and has, in fact, already given her much misinformation.  She has tried all the medications he has offered but to no avail.  The one antiemetic that seems to help is not covered by her insurance, or it is covered only in small quantities, amounts that do not get her through the long nausea-filled days.  Likewise, she has heard about some new and innovative treatments, but her doctor does not have much information regarding these procedures, and, besides, it is likely her insurance company will consider them “experimental” and refuse coverage of them just as they rejected additional quantities of the medication that would have helped ease her nausea.  In addition, her doctor has denied her pain medication because he does not want to “turn her into an addict.” He assures her it is best to just “learn to live with the pain.”

“She should find a better doctor, one who will treat her properly,” you might interject.  Yes, well, that would be nice, but this member lives in a rural area, and her options are limited.  She has no family or friends to help her travel, so even getting in to see the local doctor is difficult for her.  There is no specialist anywhere near her.  Moreover, if she can somehow find an expert within traveling distance and secure a ride, she must wait for months to see him because he has no openings before then and is not willing to squeeze her in. 

She does not know where to turn.  Meanwhile, her health continues to deteriorate.  She cannot tolerate even liquid forms of nutrition, and her weight drops to dangerous levels.  She becomes weak and malnourished and begins to fear for her life.  She calls her primary care physician who tells her to call her GI.  Her GI says there is “nothing more he can do” for her and advises her to “go to the ER if it is really that bad.”

Some of you will object: “But the ER is not the appropriate place to address this – it is meant for imminent life-threatening crises only – heart attacks and such.”  Yes, perhaps, but, as we have established, this member has not received proper assistance from her doctor and she cannot get in to see the specialist.  Her weight has now dropped below 80 pounds.  (DID THAT REGISTER?  Eighty pounds – and this is an adult, not a child.  Does anyone honestly NOT view this as deadly?)

Out of sheer desperation, she decides to go to the ER.  She must beg her neighbor to take her because she has no transportation and is too ill to drive herself anyway.  She waits for hours to be seen, and once she is called back, she encounters nurses and ER physicians who know little more about her illness than her local GI knew – perhaps not as much.   The one thing they are absolutely certain of, though, is that this wretched individual sitting before them is without a doubt a drug-seeker who has invented her pain so that she can get her latest “fix.”  After all, everyone knows “there is no pain with Gastroparesis.”  They seem relatively unconcerned about her non-stop vomiting and shrinking frame and summarily dismiss her concerns that she will surely die if they do not intervene.  At best, she is given fluids and sent home – no hospital admission and no direction as to how she can obtain long-term help.

Now we have a situation where this member has received no aid from any of the places she has approached – not from her regular doctor, her GI, or the ER.  Perhaps the ER has stabilized her to the point where she will not die tonight, but she will be in crisis yet again in a few short days because her issues have not truly been addressed and resolved.  Furthermore, she has left the hospital feeling shamed and demeaned because she dared to ask for assistance.  She turns now to my support group and begs for help because she knows that it is a waste of time and money to consult her physicians or return to the ER.  She hopes desperately that someone in the group can give her sound advice.  She now knows her GI will tell her to go to the ER, and the ER will turn her away or do nothing to rectify her issues.  And so, she is caught in a vicious cycle and learns rather quickly that it is pointless to seek help from the (supposedly) available resources.   (Oh, and she has just received that massive bill she feared as well.  How will she pay that since she is disabled and cannot work?)  This is passing the buck at its best!  Quite the dilemma for a seriously ill patient who needs immediate attention.

The upshot of these circumstances is that, regardless of who you ultimately hold accountable or believe deserves the blame, my people remain in crisis.  No one wishes to step up, take responsibility, and actually assist these patients.  No one puts their needs first.  It is so easy for everyone involved to simply wash their hands of the whole affair and turn my people away as if their lives mean nothing.  Doctors pass them on to the ER, and the ER hides behinds rules and procedures to justify sending them home to, at best, certain pain and agony and, at worst, death.  Many ER physicians are all too happy to patch my people up for a brief moment and then toss them out the door.

Please, tell me what my community members are supposed to do when facing this scenario.  Where can they go for assistance when their local doctors lack the knowledge (or will) to treat them properly and the ER refuses to offer any long-term solutions?  There are no other options for these people.  This is unacceptable care – plain and simple!  But it is more than that: It is a callous, inhumane attitude on the part of all parties involved.  It is people hiding behind policies to justify unjust actions. 

And so, I say to those of you out there in the medical profession who smugly accuse my community members of faking their symptoms, deny their very real misery, label them drug addicts because they cannot endure one more moment of pain, and turn them away hopeless and dejected... HOW DARE YOU!

I have written calmly and rationally about this situation, but the dark, horrible reality is that every single day my people are slaves to your faulty medical system which denies them basic human compassion and relief.  The truth – and their stories – need to be told.  HOW LONG WILL YOU KEEP US ENSLAVED IN THIS SYSTEM?  HOW MUCH MORE MUST WE ENDURE?  And moreover, where is the empathy, the kind touch, the basic human decency you likely once believed in when you took your medical oath? Why is it so difficult to educate physicians and ER staff about Gastroparesis care and direct them to treat us with gentleness?

These are HUMAN BEINGS... your fellow man.  They have few options, and they are hurting beyond words.  How can you so blithely dismiss them?  They have lost so much – nearly everything in some cases.  Do you not understand that?  They have lost not just their ability to eat, but their friends, their jobs, their wealth, the comfortable and pleasant lives they once knew. YOU are their last hope, and YOU are failing them!

Where is the empathy?  No – where is the OUTRAGE?  My people are suffering and dying while the medical world and our healthcare system turn a blind eye and a deaf ear to us.  How many more deaths are acceptable?  Is there no one willing to help my community? Is there no one willing to intervene to save these people?  My patience is wearing thin, and I grow weary of the excuses.  So, I ask again: Where is the outrage?

Tuesday, February 7, 2017

DEATH DANCES

























Death dances, swirls, surrounds me,
He presents his bittersweet ballet,
Haunts me, taunts me, longs to seduce me,
Lures me closer with his sad serenade.

He burns the candles and dims the lights,
Promises nothing short of the divine,
Romances, entices, whispers sweet nothings,
Ensures me the pleasure is all mine.

His icy-cold fingers brush softly against me,
Almost feel his numbing embrace,
He’s had countless lovers and courted far more,
With his kiss a multitude have been graced.

Entwined together in a Danse Macabre,
I nearly accept the deception,
His words drip softly, but his lips tell lies,
Become aware of my misguided misconceptions.

Our passionate tango begins to unwind,
His embrace is a death grip, heart-stopping,
The room spins around me – deceived, no escape,
Let me go!  To my knees I am falling.

Past lovers do mock me, scoff and deride me,
“Did you believe you were favored or special?”
My paramour delights in my confusion and terror,
My horror brings him laughter and pleasure.

At last the fog clears, break free from his grasp,
Not my lover, but a tempter, a beast,
He distracts me, cajoles me, ensnares me,
But this courtship leads only to grief.

Past partners not cherished nor valued,
Though mesmerized by his slow, sad tune,
Mourn the losses, count the costs, and awaken,
They were betrayed – mere victims of the tomb.

But there’s another, my first love, my true love,
Though scorned, He reaches out His gentle hands,
He offers comfort, solace, and tranquility,
Forgives my failings; He sincerely understands.

His romance is tender and eternal,
Light His burdens and few His demands,
When I allow, He guides and directs me,
And I know that perfect are His plans.

I blow out the candles, but I am not in the dark,
Indeed, in His true radiance I am bathed,
Can still hear the music, but fainter it calls,
Leave the dancefloor – though not completely unscathed.

Death dances, swirls, surrounds me,
He presents his bittersweet ballet,
Haunts me, taunts me, longs to seduce me,
But I take no notice of his sad serenade.