CAMPAIGN REFLECTIONS

Our community has been quite excited to share our #TakeABite4GP campaign over the last few months.  It has attracted an overwhelming amount of attention and has, indeed, lifted our spirits.  So, it was with some surprise that while viewing a new #TakeABite4GP “recap” video this morning, complete with pictures of the many who participated, I found myself feeling not just delight, but sorrow as well.  My heart rejoices that others are able to enjoy so much of what life has to offer, and I am grateful to all those who joined this campaign and for their efforts to help us spread awareness of this devastating illness we call Gastroparesis; yet, watching the images pass before me, I could not help but be struck by how much we in the GP community have lost and how badly we wish to live “normal” lives once again.  It is tough.  It is tougher than we can sometimes convey.

The bloating, nausea, vomiting, and pain that accompany GP are heavy burdens to bear, but for me, it is far more difficult still to confront the daily challenge of NEVER being able to “take a bite.”  I am thankful for the liquids and occasional soft foods that keep me alive, but, well, quite frankly, I miss “real” food.  As I sip my Ensure, I long to once again open my refrigerator and pantry and consume any one of the tantalizing morsels that strike my fancy.  I am tired of having to muster up the will-power to distract myself from hunger pangs and yearn to eat whenever I am hungry.  Most of all, I wish I could enjoy a meal with my family – just a normal meal, nothing more elaborate.  I want to one day go out to a restaurant and order something other than a drink.  I desire to sample the appetizers and mouth-watering desserts ever-present at parties and holiday events.  I would like to prepare and savor a Thanksgiving feast again.  I want to eat.  I simply want to eat.

I was reminded, in a weighty conversation this morning, that when my mother was near death, on a ventilator but still able to engage in non-verbal communication, I spoke to her, “Mom, I wish I could just have one more Thanksgiving at your house, the way it used to be.  I miss that.”  The holiday gatherings at her house represented, for me, happy times, with the family all together, enjoying good company and a sumptuous meal.  Food and social events are so deeply connected.  I knew then I would never see another Thanksgiving at my mother’s home, just as I know now there will simply never be any sort of Thanksgiving feast for me – ever again. 

This is not easy to face.  So much of our lives center around food.  Can you imagine observing all the food that appears on television, on billboards, in social media feeds, and in various public arenas and not being able to consume even a few bites of it?  Do you know what it is like watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it?  It is painful – physically and emotionally. 

If I had known that I was going to lose my ability to eat, if I had been granted any bit of forewarning, I believe I might have taken the time to appreciate the whole affair a little more than I did.  We tend to take things for granted until they are no more.  I believe I would have worried less about my weight and less about what others thought.  If I could go back, I would have had that extra piece of piping-hot bread, and I would not have left that last bite of cherry pie on my plate just to prove that I had exercised some self-control.  I would have made a greater attempt to join family get-togethers and parties, picnics, church dinners, and food festivals.  I would give almost anything to have one day where I could live like I wish I had when I had the choice.

I am starving, and it is agonizing.   I do what I must do to get through the long, torturous days.  I am careful to avoid all temptations.  I follow my given diet, take my medications, exercise regularly, distract myself, work to help others, and pray – but this is no easy journey.  Mostly, I manage to maintain a positive attitude and hold out hope that there will one day be a cure, or at least an effective treatment.  I ceaselessly remind myself of all the many blessings I have been given – friends, family, and the comforts of home.  But in the end, I still want to eat.  Have I mentioned that?  I want to eat.

So, when you are sitting down to your next meal, visiting the newest restaurant, indulging in a bit of birthday cake, or enjoying the many sure-to-come holiday treats, please think of us in the Gastroparesis community.  We celebrate your health and good fortune, and we desire that they should be with you always.  We are likewise grateful for even the smallest measures you take to assist us in spreading awareness.   But please do not forget us.  Have mercy and compassion.  Understand and acknowledge our plight.  Help us get back the lives we so desperately miss.  And by all means – #TakeABite4GP.

THE MIND'S EYE

In my mind’s innermost eye,

Mirror of my expectant soul,

People perform in harmony,

Strong and brave and whole.

No hunger, thirst, or pain,

Unbothered and at ease,

Acknowledged and accepted,

Unencumbered and carefree.

No offense given or taken,

Motives unquestioned, believed,

Obliging and uplifting,

Blessings offered and received.

But my grand and majestic illusion,

Stretches the bounds of imagination,

A heavenly flight of fancy,

A wonderland of fascination.

For we are all flawed and blemished,

Shattered, damaged human beings,

No simple pathways or solutions,

Far away hangs the bright brass ring.

Our pasts leave us doubtful and leery,

Untrusting, uncertain, insecure,

Wary of taking risks and chances,

With our hearts so timid and unsure.

We hold in the hurt and hide the wounds,

Tuck away the fury, fear, and pain,

Protect our frail psyches from all that abounds,

From the imagined scorn and disdain.

Hesitant to present our pleading hands,

Till we know they’ll be held, be taken,

Cannot open our hearts, offer them up,

Without promise they’ll not be forsaken.

A reflection of the times, I often suppose,

No time to be humble or gentle,

Claw our way to the top, a view from on high,

Cannot afford to be warm or sentimental.

The slight, the delicate, and the broken,

Living in the tangible concrete world,

Overlooked, underrated, dispensable,

Cry out – but struggle to be heard.

The hopeless, woeful, and down-hearted,

Are scorned and mocked and dismissed,

Left to fend for themselves, no protectors,

No mercy or pity, no kind assist.

“Pull yourselves up by your bootstraps,”

Speak the cold, harsh distant stares,

Cannot be bothered with the small or the lesser,

Look away, not our problem.  Who cares?

The fractured and infirm who stumble,

Those who struggle and ultimately fail,

These are judged as “unproductive,”

Though they give their all, fight tooth and nail.

Blind to their hardships and pain,

And deaf to their heartaches and pleas,

The real world grinds, churns onward,

Forgets, leaves behind those in need.

They are mere burdens and misfits,

For these, no empathy or compassion,

Our values lie warped and twisted,

Our morals found sadly lacking.

My tear-streaked and strained inner eye,

Longs for better than this unfortunate fate,

Envisions a future far brighter,

If we will only turn and mend our ways.

Must commit to the dream and the vision,

Bring truth to the great deception,

Must seek glorious grace and gentleness,

Lay the footing, in my feeble perception.

Must adore and care for each other,

Offer the full benefit of doubt,

Though people are less than perfect,

They mustn’t be discarded or left out.

The vain iniquity might be pretending

Others are insignificant, unimportant;

We must now endeavor instead,

To live fully dedicated, wholly devoted.

No trick of the mind, no delusion,

Intertwined and dependent on each other,

For comfort, for succor, for aid,

For joy and bliss yet undiscovered.

The fantasy unfolds and is realized,

In a world all of our own making,

Be it bitter or sweet, harsh or soft,

We shape the journey we are undertaking.

All of us are in this together,

Indeed, no one gets out alive;

Set our sights on something far better,

For we all must flourish and thrive.

Choose to believe in a bright future,

Recognize there can be a better path,

The road can be paved with tenderness,

Be forgiving and free from wrath.

We must learn to care for one another,

Strengthen bonds and loosen chains,

We must truly strive to join together,

For our efforts to usher in change.

The cold and cruel material world,

And the fantastical illusion,

Must one day unite, must coincide,

This is our one best resolution.

THE FINAL CURTAIN CALL

Playing the role of a lifetime,

Behind a burnished mask,

Pretending I am able-bodied,

That I’m whole – no easy task.

Camouflage my flaws and defects,

Veil my raw, tear-stained cheeks,

Masquerade as living and breathing,

Trapped in a soul, pained and weak.

The unending audience of cynics,

Demands – expects – my best showing,

No second-rate, mediocre production,

For the spectators are gifted, all-knowing.

No practice, no pre-play rehearsals,

Impromptu, must think on my feet,

No second chances or second guesses,

No occasion to restart or repeat.

The critics are carefully observing,

Primed to cajole and berate,

Comfortably seated in judgment,

Deliver the verdict, determine my fate.

Harsh words, condemnation, disapproval,

Scattered on black and white pages,

My performance is sadly lacking,

The high and mighty mass media rages.

My delicate façade has been broken,

Anguish!  Hurts worse than my ills,

Tormented, bitter tears fall freely,

I simply do not fit the bill.

The curtain is drawn on this story,

No breathless demands for “Encore,”

The stage is now dark and empty,

Bone-weary, I can offer no more.

COMES THE NIGHT

In the glistening warmth of the sun,

In the glorious light of the day,

No worries, no concerns, no cares,

All my trials and troubles far away.

No sorrow, no qualms, no regrets,

No frailties or infirmities to be seen,

Hopeful, blissful, and optimistic –

What on earth could happen to me?

Far below me, all creation cries its tears,

But I am blinded by the magnificent light,

Oblivious to the broken and downtrodden,

Turn my eyes from their miserable plight.

Artfully avert my downward glance,

Perhaps all the misfortune will go away,

Walking the enlightened path,

From my righteousness, I will not stray.

The sunshine is simply splendid,

The future burns quite bright,

No need to dwell on hardships –

But all at once, down comes the night.

Comes the night and all the darkness,

Bitter, harsh, and cold,

Frightened, stunned, and shaken,

Chilled to the brittle bone.

What once was mine is lost,

As pleasure turns swiftly to pain,

Lose the day, lose the warmth, lose my footing,

Sunlight transforms into rain.

Hellish beasts and demons,

Appear the creatures of the dark,

Cruelly haunted by my long-dead past,

Become wounds of my once hardened heart.

The tomb that is hollow and empty,

Beckons, calls to me,

The grave, profound and hidden,

Now forever can be seen.

The depths of despair and anguish,

In the ones who are less than whole,

The fate of all the abandoned ones,

Now pierces my once lost soul.

Some will declare their disbelief,

But I know the story far too well,

It lies buried deep inside of me,

And it is mine alone to tell.

The pages turn before me,

Swiftly, fleetingly, they fly,

So far from the glorious beginning,

When I believed I had more time.

I had no great love, no tenderness,

During my days in the blessed light,

No concern or solace for the lesser ones;

They barely entered my mind.

I have found that fate’s a cruel teacher,

But an effective one nonetheless.

I have become a scholar in hardship,

A dazzling master of hopelessness.

So I offer up a warning

To you whose hearts and souls are black –

The shades have been thrown open,

Find the mercy you seem to lack.

The sunrise can once again return,

Not only for me but for you,

But you must be willing, be open

Must help those around you begin anew.

Those unfortunates who have passed over,

From bright daylight into dark night,

Need kindness, understanding, and mercy.

Will you take up our burdensome fight?

You soulless souls find it arduous

To pause and peer into the dark,

But you must, for the sake of your own sakes,

Spark the fire in your cold, dead hearts.

Illumination comes from the inside,

And not, as you believed, from without,

Have compassion on the untouchables,

Radiate your brilliance throughout.

For it is only your benevolence,

We anchor our fragile hopes upon,

Only your kindness and gentleness,

That reawakens the dawn.

PIECES OF THE WHOLE

Something less than human,

Pieces of the whole,

Cracked and broken open,

Have mercy on her daunted soul.

A puzzle missing pieces,

Never quite complete,

A riddle, an enigma,

An unfinished music sheet.

There is something she is lacking,

Once held but now is lost,

The key to all her questions,

But the chasm she cannot cross.

The labyrinth engulfs her,

Cannot see above the walls,

The answer, it eludes her,

As she roams lost within the halls. 

What happened to the person

Who once was unimpaired?

She has been found wanting,

Frail and weak and scared.

Must rearrange the pieces,

Put them back in place,

Decipher the information,

Before it is too late.

The woman who now queries,

Once knew where she belonged,

Planned a different future,

One that has gone so wrong.

Caught up in this dilemma,

She cannot see the light,

Feels her way through the darkness,

Seeks an end to this black night.

Who can help this poor blind soul,

Guide her back to where it’s safe?

Who can gather the parts,

Assemble them in their place?

Those masters of comprehension,

Vast knowledge to impart,

Should perhaps review the problem,

And respond instead with their hearts.

For this being who is divided,

Split and incomplete,

Requires compassion and healing,

Not scolding and conceit.

Her solitary hope in this life,

Lies in the One above,

Who can mend her tattered soul,

Offer grace and comfort and love.

He holds all the answers,

Carries her through the maze,

He erects the bridge

From despair to brighter days.

He is her Saving Grace,

The One who keeps her sane,

Who never fails to remind her

That her searching is not in vain.

He is patient, though she falters,

Failing to understand,

Holds the fragile fragments together,

Dries her tears and takes her hand.

He silences her doubts and fears,

Calms her shattered mind,

Fills in the missing pieces,

Pens a symphony warm and sublime.

He alone can restore her,

Shape the parts into a whole,

He is indeed the Great Healer, 

The one who completes her soul.

AWARENESS: THE MORNING AFTER

On this 27^th day of August, we are nearing the end of Gastroparesis Awareness Month, and, in my estimation, much awareness has been spread.  We should be elated about the strides we have made.  After all, August 2016 would appear to be a banner year for our community.  For the first time ever, we have an officially recognized national awareness month.  In addition, governors in 22 states have approved proclamations declaring Gastroparesis awareness weeks or months.  We have a congressional bill (HR 2311) before a subcommittee that would give us much-needed research funding and that has attracted additional cosponsors each congressional session.  Numerous articles and interviews, both local and national, have shed light on our illness, and countless websites have included information about GP in an attempt to help us spread the word.  We are receiving more attention than ever before.

Yet, as I reflect upon the month and upon the current mood in our GP support groups, I see anything but joy.  In fact, I see quite the opposite.  This community is depressed.  Many are feeling defeated – and even guilty.  Why?  Because at the close of this month, we are very much “aware” that, despite any gains that have been made, we still have miles to go. 

August has not brought a cure.

I hear the grumbling in this community: “Awareness Month is almost over.  I didn’t do enough.  I wish I had done more.”  Many of us feel guilt and regret that this illness has kept us from pushing harder for our cause and that we have been unable to host in-person awareness events, garner additional media attention, persuade family members and friends to share articles, memes, photos, and stories, and secure donations for our digestive disorder organizations.  We lament the fact that there has been no “ALS moment” for the GP community, and we mourn the loss of what we perceive to be opportunity “wasted.” 

We are sad, but, moreover, we feel helpless and rejected.  We have been disparaged by family members and friends who have brushed us aside, not bothering to read and share our stories, and who have refused to participate in our awareness campaigns.  We have been cast off by the media, which, despite its vast reach and great power, has rejected our pleas and has refused to engage in a supreme effort to shed light on our condition and reach the legislators, researchers, medical professionals, and others who could make a significant difference in our lives.  We have been dismissed by the politicians and policy makers who have failed to support our congressional bill and who have not pushed to enact measures which would make it less cumbersome for us to get necessary treatments, insurance coverage, and disability funds.  We have been scorned by pharmaceutical companies, insurance companies, and medical professionals who have paid no more attention than usual to our plight and have done nothing to improve our care.

Most of our community members have engaged in a determined effort this month to convince those around us who might truly transform our circumstances to reach out, show compassion, and pull us out of our abyss. We have put all of our energy into this cause.  We believed, for a time, that if we simply worked hard enough and long enough, if we were truly motivated enough, we could achieve all we had set forth to accomplish.  But, at the end of the month, comes the realization: nothing much has changed.  And so, we feel powerless in the face of this beast of a disease that seeks to steal our very lives, though we have fought tooth and nail to change our situation. 

Come the morning of September 1, 2016, we know that, as usual, we will wake up with GP and all of its devastating effects.  We will still be forced to engage in the daily battle against nausea, vomiting, pain, hunger, bloating, and all of the other hardships that accompany our illness.  We will encounter family members and friends who do not understand our limitations and who abandon us because we can no longer participate in activities quite the way we used to.  We will continue to confront medical professionals who believe we are hypochondriacs and drug-seekers, faking our illness for sympathy and attention, and we will watch our bank accounts further diminish and our finances crumble in the face of ever-mounting medical bills. 

This is the harsh reality.  There is no denying it; yet, the truth is more complex than this.  There is a downside to awareness month, a somewhat unexpected sense of disillusionment, to be sure.  Perhaps we cannot completely avoid or ignore the “letdown” feeling that has reared its ugly head, but we can see our smaller-than-hoped-for gains for what they are: progress.  In the final analysis, this does not have to be an “all or nothing” scenario.  No, we have not brought our disease to an end, and we have not achieved universal awareness.  We do not have a cure, and we will not wake up tomorrow to magically symptom-free days.  But we are altering our landscape.  Little by little, we are changing how our illness is seen by those around us.  Our stories are gradually having an impact.  Not all have been moved to compassion – but some have softened.  Not all have been persuaded to help – but a few have responded to the call.

There has been no revolution, no overhaul of the system that persists in permitting our agony, but we must not demean the advances we have made.  Ultimately, we cannot regulate the behavior of others; we can merely govern our own actions.  Likewise, we cannot control all outcomes, but we can help shape them with our continued engagement.  Furthermore, our awareness campaign does not have to end simply because August has.  Perhaps we cannot maintain the same grueling pace, but we can take tiny steps forward.  Piece by piece, we can chip away at the obstacles that stand in the way of our cure.  We cannot do it alone, but we can do it together.  Progress may be slower than we wish, but we will see our dreams realized one day.  We must continue this fight, rise up as many times as necessary to effect change, because, in the end, what other choice do we really have? 

We must not remain discouraged.  We have not accomplished every goal, but we have made small strides toward them – and that is surely preferable to standing motionless.  As we approach September, we must determine to convert the awareness we have gained into concrete actions.  Our battle has not been lost, and we must resolve to pursue all possible measures that might win us the attention and help we so desperately need. 

We must be proud of all we have achieved and must never be convinced that our actions are in vain.  We matter, our struggles matter, and our efforts matter.  We are NOT failures because we do not yet have a cure.  We are simply facing difficult circumstances and battling a disease that is a formidable opponent.  But make no mistake, we are motivated, strong, and persistent.  We cannot lose sight of that in the midst of our current, temporary despair.  September is a new month – one full of hope.

CELEBRATE YOUR ACCOMPLISHMENTS!

CELEBRATE YOUR ACCOMPLISHMENTS!

We have had a fantastic year for Gastroparesis awareness, and I hope you all are very proud of what we have accomplished!

Thanks to the IFFGD, House Rep. Gwen Moore (statement: https://www.congress.gov/congressional-record/2015/07/09/extensions-of-remarks-section/article/E1028-3), Senator Tammy Baldwin (statement: https://www.congress.gov/congressional-record/2016/07/12/senate-section/article/S4995-1), and all of you, we have been added to the NHO calendar and August is now officially, nationally recognized as Gastroparesis Awareness Month!

In addition, we have 20 approved state-level awareness proclamations in place (and 19 of those have already been received by the person who requested them). We have another 10 submitted and awaiting a decision. 

Here is a list of those that have been approved:

ALABAMA
ARIZONA
ARKANSAS
GEORGIA
ILLINOIS
INDIANA
IOWA
LOUISIANA
MARYLAND
MINNESOTA
MISSOURI
NEVADA
NORTH CAROLINA
PENNSYLVANIA
SOUTH CAROLINA
TENNESSEE
TEXAS
WASHINGTON
WEST VIRGINIA
WISCONSIN

The following have been submitted and are still awaiting a decision:

FLORIDA
MAINE
MASSACHUSETTS
MICHIGAN
NEW JERSEY
NEW YORK
OHIO
OREGON
UTAH
VIRGINIA

We work on these in our advocacy group at https://www.facebook.com/groups/Gastroparesis.FightingForChange/. If you join there, you will find instructions, and we will help you through the process. It is too late to get a proclamation in place for August this year, but if you are willing to request a week later in the year, we might still be able to do it.

We also keep a list in our group that we update regularly to reflect new information. We post photos of all the proclamations that have been received on our community page at

https://www.facebook.com/Gastroparesis.FightingForChange.Page/ as well.

THANK YOU ALL FOR YOUR HELP!

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For photographs of the proclamations we have received, please see:

Gastroparesis: Fighting for Change Photo Album