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 tormentor,

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 is unrestrained, free to soar,

This body is enslaved in his Hell,

But my fearless soul has been made whole.

BEYOND THE GARDEN GATE

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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.

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. 

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.

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Website: www.curegp.com

Twitter: @MelissaRVH

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E-Mail: gpfightingforchange@gmail.com