VIRTUALLY ALIVE?

I woke up this morning to two more deaths in our Gastroparesis community.  These days, I dread opening my computer because it seems there is never a break from the death and grief that surround us.  I was expecting to put up a cheery post about Virtual Advocacy Day.  I was all prepared to write a nice little commentary on how we should fight to be heard – ready to try to spur our community into action.  But instead, I was once again forced to post the ever-looming green candle that I have come to both love and hate.  I no longer have unique or special words to announce these passings.  I have offered prayers and condolences so many times that I cannot find a new way to express my sorrow.  I want to curl up and hide somewhere; but it is Virtual Advocacy Day, and we have a bill that needs to be passed, so I once again tell myself all the many reasons I must ignore my feelings and move on with the day as planned.  Indeed, if I need motivation, it is times like these that should inspire me into greater action. 

This grief and these deaths, this fear that it will be one of my very close friends today or that perhaps it will soon be me, this love I have for all those who have passed away and for all those who very well could, this is why I advocate.  These people, who fight so hard to stay alive and to remain upbeat, to live their lives as if the threat of death did not hang just above them – they are why I cannot remain silent.  It is because of the many souls in our GP community who come into our groups every single day and do their best to spread cheer, offer advice and information, and speak kind words to those in dire need that I do not sit and stew in my grief.  And it is for those poor, weary, struggling friends who are in physical agony, who are fighting alone with no one to help them or comfort them, who can no longer afford to care for themselves and their families because of their hopeless financial situations – the mounting medical bills and unemployment, that I pull out my soapbox and encourage others to do the same.

I hate these green candles for the deaths they proclaim, but I love them for the beautiful souls they represent.  These are not people who “gave up” or “lost” the fight.  Nothing could be further from the truth.  No, they battled as hard and as long as they could against a vicious illness that robbed them of everything and against which they had few weapons.  The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships.  These are not people who failed; they gave it their all and fought to their last breath.  They inspire us and compel us to continue to wage our own wars against the cruel illness that ravages our bodies.

They remind us that even in the midst of pain, grief, and looming death, life is precious, and we must live it to the fullest because we are not guaranteed a single day.  They implore us to believe that we did nothing to deserve this affliction, that we are not worthless, or valueless, or insignificant, or “lesser” because we fell ill, and that our lives MATTER.  We are ALL fighters, and we are doing the very best we can to survive. 

But we merit so much more than mere subsistence.  Indeed, our goal is to flourish.  We desire and warrant treatments that allow us to thrive.  We seek the kind of support and respect, treatment and conditions, and attention to our needs that will allow us to genuinely LIVE our lives rather than spend them in hospital beds and dark lonely rooms, struggling to meet basic needs, consumed with pain and fear.  We deserve a life free from the limitations imposed by Gastroparesis.

And so, I advocate – day after day, all day long, without ceasing.  I post on my personal pages, in groups, all over social media, and on websites.  I write articles and poems, create memes and graphics, establish and administer groups, and invite you to “green” events.  It is my duty to myself and to all the members of this community to do so.  I cannot look away and pretend that all is well.  I cannot ignore the pain, loneliness, hopelessness, despair, and death that surround me – and I hope that none of you can either. 

I ask you all – members and non-members of the Gastroparesis community alike – to please help us in our efforts to find an end to this life-altering, destructive, and often deadly disease.  I ask you to sign our petitions, support our bills and proclamations, send letters to your congressional representatives, and light your green candles for those who have fallen.  Educate your family, your friends, your doctors, the media, and the public.  Join our events and shout our pleas from the rooftops and streets if necessary.  DEMAND better treatments and a cure for those in the GP community.

Please do not avert your glance.  Do not ignore our pleas.  There is no one else – only you.  We will not be magically cured or relieved of our burdens.  We need YOUR help – every single one of you, ill or healthy.  We cannot afford to sit back, back down, remain complacent or apathetic, or cease our awareness efforts.  Our very lives depend on it.  How many more candles can we bear?

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We encourage you to join in our Virtual Advocacy Day and fight on our behalf to pass HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, which would expand research and promote awareness of functional/motility GI disorders such as gastroparesis. This bill is designed to help promote education of physicians and the general public, increase efforts to find new and effective treatments, expand clinical research, and create new medical centers designed to study these disorders and share information with others. I urge you to read the text of the bill and contact your representatives. Ask them to sign on as cosponsors and support this bill! I cannot overestimate the importance of this bill. You can find additional information and read the text of the bill at either https://www.congress.gov/bill/114th-congress/house-bill/2311 or https://www.govtrack.us/congress/bills/114/hr2311.  You can electronically sign and send a letter urging your congressional representatives to support HR 2311 at https://buildquorum.com/actions/1996.

Please consider joining our event at https://www.facebook.com/events/1725246334422271/.  Show our Congress that we are indeed 5 MILLION STRONG!

THE OTHERS

We walk among the shadows

And live behind the veil,

Locked in another world,

One dull and dark and pale.

Just a few shades shy of whole,

Peering now through the looking glass,

Mired in this desolate land,

Remembering fonder times past.

We once knew light and laughter,

Lived among the living,

Once strolled among the Others,

No apprehension or misgiving.

We cannot now embrace them,

Just beyond our reach,

They turn as if to stare,

Feel their gaze, but they do not see.

Invisible?  No – but shrouded,

Enveloped in a mist,

The others mill about us,

As if we do not exist.

They go about their carefree days,

Oblivious to our plight,

Ignore the gaunt apparitions,

Though we plead with all our might.

Our words, they must be muted,

Our appearance obscured by the haze,

Our struggle to cross back to their realm,

Unnoticed, unaware of our pain.

We yearn to feel the sunlight,

Co-exist in their brilliant world,

We cry out to be resurrected,

They hear, but we are not heard.

Dear Others who have such blessings,

Such contentment and such peace,

“Won’t you help us?” we beseech you,

We beg for our release.

Healthy and whole on the outside,

Free from the invisible cage,

You who are dead on the inside

Do you notice our cruel fate?

You who have been granted wellness,

Who know no pain or despair,

Pull back this shroud, this curtain,

That prevents us from joining you there.

Open your hearts to our calling,

Let your ears hear our distant cries,

Shine a light into our blackness,

Shed the scales that cloud your eyes.

For the veil between the worlds

Is your choosing, your will, your design,

And the unseen partition that divides us

Must be removed by the enlightened side.

Your eyes are blurred by callousness,

Instead of heartfelt tears,

But you can remove the blinders,

Your vision, at last, can be clear.

From behind the window, we entreat you:

Break the panes and remove the shards;

Crack open your shielded hearts,

And topple this house of cards. 

The ghostly world that entraps us,

Imperceptible but to the chosen few,

Can surely be made apparent,

Can again appear in plain view.

We ache to walk among you,

Leave this world so ethereal and frail,

Endeavor to rejoin you Others,

Are our petitions to no avail?

Who among you holds the mercy,

The tenderness and grace,

The perception and the wisdom,

To save us from our dark fate?

Please hear our unsung malady,

Find the compassion for which we long,

Once again embrace our presence,

Usher in for us a new dawn.

ABOVE THE ABYSS

The fathomless abyss

Encircles us all,

Beckons, summons,

Grows ever-nearer the call.

We dance on the edge,

Counting the days,

Grapple for footing,

In this cold, desolate place.

Watch those around us

Succumb to its pull,

Teeter on the rim,

In this life, uncertain and cruel.

Its dark, deadly hand

On our hearts has a grip.

We struggle, hold tightly,

Try not to slip.

Peer into its depths

And ponder our fate.

What lies below?

What blackness awaits?

A terror of our own making,

Yet difficult to avoid.

Our hope sometimes wavers,

Our faith is devoid.

So unfair, so unjust;

No reason, no rhyme.

How close now? It’s looming,

Fear we are running out of time.

We push it aside,

And run from its edge,

But at the same time, wonder

What is there to dread?

So easy it would be

Into its depths to descend,

Fall into the darkness,

Let our pain and hunger end.

Enticing, yet frightening –

Do we embrace or decline?

It’s a game, a dilemma

That plays out in our minds.

We long for answers,

For an end to this torturous reign

Strive to understand, to contend,

To stay sane.

The chasm, it calls,

It entreats, it insists,

But we rail against it,

Raise our fists and resist.

Somehow claw our way up

And fight to survive,

Cling to a flickering hope,

And resolve to stay alive.

Make it to the daylight,

Just to begin it all again,

Find the will to go on,

To endure to the end.

Far above the chasm,

Well above the abyss,

Lives a light, a beacon,

“Remain,” it insists.

So we pray for those fallen,

Beg mercy for those on the edge,

Find a way to crawl forward,

Back away from the ledge.

The boundless pit of despair,

Of hopelessness and death,

Ever looms before us;

Yet we pause, take a breath.

We are here a moment more,

Must hold our ground, refuse to slide,

As we dance on the edge,

Walk the tightrope, abide.

Life is fragile, it’s uncertain,

And tragedies abound,

But we are here, and we are blessed,

Meaning is to be found.

The Light from above,

Which sometimes blinds and obscures,

Also has the power

To heal and to cure.

It can give us the will

And the strength to go on,

Surround us with mercy

Usher in a new dawn.

Surrounded by sadness,

By blackness and grief,

It steadies us, uplifts us,

Provides mercy and peace.

Seeps into our souls,

Drags us up from the pit,

Shines a beam into the darkness,

Brings us out of the abyss.