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The call in the middle of the night,

For which one is never prepared,

Unwelcome guests on the doorstep,

With heart-wrenching news to share.

 

We try to process the horror,

Sit in stunned silence, confused,

Cannot accept the certitude, the finality,

The mind rejects the mind-numbing truth.

 

Devastating, life-changing utterances,

Fall upon unprepared ears,

Words conveying brutal realities,

Our worst and suddenly confirmed fears.

 

Gone with no warning, in a moment,

Gone with no chance for goodbyes,

Gone while we all slept at peace,

Gone in the blink of an eye.

 

Agony and grief beyond compare,

Tears of sorrow now freely flow,

Devastation descends on our hearts,

Realization dawns ever so slow.

 

Try to make sense of the senseless,

But the nagging questions remain,

Did she struggle and did she suffer?

Was she aware and was she in pain?

 

Did she feel the love of her Savior,

In those last precious moments on earth,

Was she aware of His arms wrapped around her,

In death as they had been from birth?

 

Was she comforted by His sweet song,

When welcomed into the glorious light?

Did she feel the depths of His compassion,

While ushered out of this darkest of nights?

 

Did she know of His unknowable mercy,

Of His free and unmerited grace,

Comprehend His unfathomable love,

When she at last gazed upon His face?

 

And has she now found peace, so elusive?

We pray she knew how much we loved her,

We mourn, and we ache, and we weep,

Find comfort in the kindness of others.

 

This life is so fleeting, so brief,

A precious and glorious gift,

We are here and gone in an instant,

The days flowing onward and swift.

 

This world is not our final destination,

Not our hope, or our rest, or our home,

We were meant for another, our Maker,

And to Him we lovingly belong.

So, breathe in the beauty around you,

And cherish the ones you love,

Embrace them while they are still near you,

Hold tight to the memories when they are gone.

GASTROPARESIS AWARENESS MONTH 2020: #WarOnGP #GPRevolution

Six years ago, on Valentine’s Day 2014, I was diagnosed with Gastroparesis, and my life was, from that moment on, forever altered. Since diagnosis, I have endured much and have learned even more. I advocate because it saves me from despair and adds meaning and purpose to my life, despite the harsh effects of this cruel illness.

Over time, I have set many goals for myself and for this community, and chief among them is convincing my people how incredibly strong, skilled, able, and special they are. This is not an easy sell, since the world has convinced many of them to buy into the lie that chronic illness makes one weak and worthless.

But nothing could be further from the truth.

I have witnessed agony beyond compare in our GP groups, horror stories of neglect by friends, family, and the medical system; physical, mental, and emotional pain and abuse; career loss, financial bankruptcy, homelessness; hopelessness; and death. I have also witnessed unrivaled compassion, empathy, and spirit and am frequently awed by our members' generous gifts of time, information, advice, and encouragement to other members in need, all while they themselves struggle to get through the long, dark days. Time after time, they pick themselves up, dust themselves off, and find ways to survive, despite the difficulties.

Yet these feelings of worthlessness and inadequacy persist and are perhaps heightened because, despite our monumental efforts, we still have no cure. Last year, in an attempt to pass HR 3396, the Functional Gastrointestinal and Motility Research Enhancement Act of 2019 (a budget-neutral, nonpartisan bill that directs the NIH to expand and intensify its research and education efforts in regard to digestive disorders such as gastroparesis), at my urging and with a strong desire to unite for our cause, members of my Gastroparesis: Fighting for Change community sent hundreds of letters to their congressional representatives and made countless telephone calls urging these lawmakers to sign onto the bill.

In addition, in June of 2019, despite the physical and financial challenges, many of us traveled from throughout the nation to Washington, DC, for an unprecedented patient rally that highlighted our hardships, our need for proper medical care, our lack of research funding, and our desire to once again live “normal” lives. We gathered the day after that rally and (with the help of a disease-related nonprofit who assisted us in scheduling) met in person with our legislators on Capitol Hill. At home, in our individual states, those who could not travel with us hosted a virtual March on DC as well, and a few months later, we followed this up with a Virtual Advocacy Day, designed to sway our legislators to finally open their eyes to our plight and cosponsor our bill. We shared our stories, bared our souls, and put forth our best effort to make a difference for our gastroparesis community.

The result? To date, we have a whopping 22 cosponsors. Yes, that’s right… 22 out of our 435 House representatives deemed us worthy of help… 22.

Now a lesser group of people might have given up at this point, especially considering that in past years, with far less action and advocacy, the bill garnered nearly the same level of support. But is that what we did? No, because we are neither incapable nor apathetic. We regrouped, and a handful of volunteers researched and called the offices of those representatives who so blithely dismissed their own constituents, and we gathered the names and contact information of the health staffers of every single legislator who turned a deaf ear to our cries. And in less than one week, we sent follow-up letters to 185 congressional offices representing 349 constituents. That kind of effort and support from a community our size is unheard of.

Despite the daunting task and the overwhelming odds against us, we answered the call. And we will continue our efforts to educate legislators about our illness and inform them of our needs so that every man, woman, and child in our gastroparesis community can receive competent, compassionate care and so that we are granted much-needed research funding that tackles the causes of our illness, rather than merely symptom control, and which brings us cures rather than band-aids. We must have our lives back!

The current healthcare system has failed us, and the powers that be believe we should sit in silence while they “guide” us to our slaughter. But we are not helpless sheep, nor are we inept or unmotivated, and we vow to make the voices of the more than 5 million of us heard by everyone who impacts our care – our families and friends, the medical community, the researchers, our legislators, the media, and the general public. My friends are suffering and dying while the whole lot of “influencers” gain wealth and prestige at our expense, and we have had enough.

Make no mistake, we are in the midst of a War on GP, a GP Revolution as we like to call it, and we can take no prisoners. We are committed to meaningful change for our community. We can and will realize our goals.

Answer the call. Suit up!

HERE ONE MOMENT

Here one moment and gone the next,
Such a brief life with which we are blessed,
“How did this happen?” we ask, perplexed,
“Could no one help her? Did no one suspect?”

We recognize its ravages, know well its ways,
We see the risks and are often afraid,
But when one amongst us slips silently away,
We gasp and fret, alarmed and dismayed.

It seems so shallow, meaningless, cliché,
To offer our condolences – but what else can we say?
This cruel illness to which we are chained every day,
Shatters our peace, steals our loved ones away.

The grief is stifling, difficult to bear,
Surprising, shocking, comes out of nowhere,
We weep and mourn, light a candle, say a prayer,
And wonder if deep down, she knew how much we cared.

People pass through our lives, just a name and a face,
And we barely pause to appreciate their beauty and grace,
Catch only a glimpse of their heartache and pain,
A lightning-quick flash of how they struggled in vain.

We see but pieces and not the whole,
Of a life well-lived, a glorious soul,
We long to connect and strive to do more,
But we are barely surviving, and so, we fall short.

Still, we mourn the losses of those who like us,
Fought to keep fighting and never gave up,
We praise their endurance and lift up the cup,
Toast their brave front and express our remorse.

But how do we process the anguish we feel?
How do we make sense, move forward, and heal?
Moreover, how do we handle the horror and fear,
That perhaps one day soon we, too, will disappear?

What if the candle burns next for me?
Will lovingly, kindly remembered I be?
My tortured body finally set free?
My tormented mind at last granted peace?

Will the world pause a moment to acknowledge my fate?
Will it notice my absence, feel the vast emptied space?
Will my words and my deeds then more fully resonate?
Will they understand the cause to which myself I dedicate?

Will my life have meant something to someone, to all?
Or will my passion and devotion to answer the call,
And raise my voice for those on whom misfortune befalls,
On cold hearts, darkened souls, and deaf ears at last fall?

Few answers, I fear, small comfort, just a plea,
That our humanity, our hearts, our totality you see,
And not just our illness, our failings, our needs,
But our striving to live fully, to matter, to succeed.

Here one moment and gone the next,
Such a brief life with which we are blessed,
Take it in, feel the wonder, give it our best,
In the end, hope for peace and mercy and rest.

DOWN TO THE GRAVE

As the night rages on, dark and heartless,

The struggle begins, never ends,

Face my demons, my constant companions,

Silent tigers set to pounce yet again.

There is a battle that erupts from within me,

A fight for my weathered and weary soul,

Between utter acceptance and indignation,

Amidst fragments that long to be whole.

Down to the grave the fight pursues me,

Rears its ugly, unforgiving, wicked head,

It taunts and it taints and it tortures,

Overtakes me and fills me with dread.

They tell me I am not my illness,

But it surely has a death hold on me,

A steely, ice-cold grip beyond measure,

And it refuses to just let me be.

Pretending not to notice its presence,

Resisting it and pushing it away,

Denying its very existence,

Seems to me no great plan of escape.

For no matter my feeble attempts at resistance,

It shapes and molds me in sundry ways,

Pain and misery drop their calling cards,

But mercy and compassion are what remain.

So, though I know it is ever within me,

Waxing and waning, friend and foe,

Still, I struggle with how to address it,

Embrace it or simply wish it weren’t so?

You see, the problem lies in the history,

As I long for days long gone by,

As my heart recalls their splendid beauty,

Their siren song stuck in my mind.

Days of serenity and tranquility,

Times of mental and physical ease,

No cries of despair and desperation,

No opponent that we call “disease.”

I have tried to submerge my old life,

Have buried it way deep down,

But still, my memories haunt me,

They refuse to stay in the ground.

They call me back and drag me under,

Wound and cut, bring me down,

Remind me I now have nothing to offer,

Bits and pieces of me no longer to be found.

I endeavor to savor the moment,

And to future aspirations attend,

But the past still beckons and calls,

It will not allow me to fully mend.

And when I think I have settled on an answer –

To embrace my new life much like a friend,

Just when I believe I am devoted to acceptance,

My anger rises, flares hot once again.

I rant and rave in rebellion,

Wage war against my miserable new fate,

Vow solemnly to destroy this illness,

Filled with vengeance and fury and hate.

And what about the so-called “lessers,”

The glorious souls for whom I also fight?

They did not ask for this doom, this misfortune,

And they do not deserve this dreadful plight.

Though this illness runs rampant, unchecked,

It must dearly pay for all it has taken,

From me, from them, and from those yet to come,

I can’t allow them to be forgotten or forsaken.

But what of all my efforts and labors?

What can I really hope to achieve?

I fear my friends will still struggle and die,

No compassion, no cure, no relief.

Why not remain undisturbed,

Safe in my submission to fate,

Far from the fields of battle,

Close the door, seal it tight, bar the gate?

Yet acceptance resembles resignation,

And the most I can bear to do is accede,

To the momentary passing demands,

Of this heartless, unforgiving disease.

So, slowly I begin to determine,

That I have a choice to make,

Allow the past to paralyze and chain me,

Or march onward and refuse to break.

Step forward when I am able,

Glance back when defenses are down,

Mourn the setbacks and the passings,

And with hope and promise myself surround.

I can stew in my anger and hatred,

I can wallow in sweet misery,

I can focus on the past and all I have lost,

Remain debt-free, no obligations, live for me.

Or though the memories burn and consume me,

I can permit them to flame, fuel the fire,

Rise from the ashes of hopelessness and despair,

Full of passion and drive and desire.

For my greatest foe is not this illness,

Nor the memories to which I still sometimes cling,

It is apathy and inaction that harm and hinder,

The allies, tag-team buddies of this cruel disease.

My recollections of all that is missing,

Since this illness struck my once peaceful life,

They speak of all the magnificent reasons,

I must wield the sword and fight the good fight.

I battle for the reemergence of what I’ve lost,

Can no longer cling to old and faded memories,

But I must once again fill my broken heart,

With a little bit more than mere dreams.

So, down to the grave with apathy, complacency,

With fear and sorrow and regret,

They form the chains that bind and restrain,

Repeat the brutal patterns in which we are set.

I refuse to go gently or tread lightly,

When so much is to be gained and is at stake,

I will gather my forces and take the field,

You can bend me, but I will not break.

Take a moment to mourn my old life,

Pause, but then vow to charge ahead,

Down to the grave I’ll not willingly go,

I choose to bury my grief instead.

The night rages on and the battle again begins,

But the nagging demons I will keep at bay,

For I have a mission, a duty, a goal,

A new dawn, a new day, a clean slate.