Wednesday, February 19, 2020

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.

Sunday, December 1, 2019

ONWARD EVER I GO


























Drag myself up,
Pour myself out,
And some days I wonder,
“Is this what it’s about?”

Struggle to find meaning,
Lost in the pain,
Abandoned to this nightmare,
My efforts in vain.

Does He see me?
Does He care?
Do I matter?
Is He aware?

In the midst of the suffering,
Grief beyond compare,
Masses of people,
Hopeless and in despair.

We’re not promised a day,
This I understand,
But I still long for a glimpse
A hint of the Master’s plan.

Good people all around me,
Crying out for better days,
Mustering up their courage,
Doing their best to keep the faith.

But rewards are few and far,
Hardships near and wide,
Explanations beyond my grasp,
And He does not confide.

Don’t mean to be ungrateful,
For much have I been given,
But my mind has many questions,
So, toward answers I am driven.

Don’t blame Him for my fate,
For, indeed, He owes me nothing,
Still I cannot help but wonder,
Why the blessings are not coming.

One touch and I would heal,
One thought, my troubles gone,
One glance in my direction,
My misery withdrawn.

I assume there is a lesson,
Though many I have learned,
What am I still missing?
For enlightenment I yearn.

The foundations He has laid,
So, who am I to question?
Yet ever the notion lingers,
And that is my confession.

Onward ever I go,
Forward where He leads me,
A pathetic worm before Him,
A sinner with but one plea.

That this life of ill and struggle,
Is only but a moment,
Pale shadow of the next world,
One free of lament and torment.

All my hope in my Creator,
That my blind eyes one day will see,
The intricate web he weaves,
His eternal love for me.

Sunday, September 8, 2019

DANCE WITH ME HERE


Dance with me here for a time,
Memories fresh in my mind,
Opened the door just a crack,
Caught off guard by what does remind.

Of the life that once came before,
Of the beauty I chose to ignore,
Don’t know what you’ve lost,
Never counted the cost,
Couldn’t know the horrors in store.

Laughter and lightness long-gone,
Days upon end without dawn,
Heartache and longing they grip,
Unspoken words never passed from my lips,
Feeling I’m forgotten, don’t belong.

Stuck in slow-motion and frozen in time,
Reminiscences serve to chastise and bind,
Let them go, ease my grasp, let them flow,
Caught up in sorrow, regret, and turmoil,
Can’t progress nor neither rewind.

Am I condemned to a life of remorse –
Ever-searching, ever-roaming, off course?
Will the reminders remain?
Am I unable to change?
Is there nothing more to look toward?

Of my past, only a remnant remains,
But it ties and it taunts, fills with pain,
Haunted by opportunities missed,
Too numerous are they to all list,
Can I untangle and loosen the chains?

I tell myself all the right phrases,
Offer encouragement, hope, and fresh praises,
But deep down in my heart,
Where I am broken apart,
Wonder if the truth does betray this.

What more can I do to keep the faith –
Ensure my hope and beliefs aren’t misplaced?
Ever-seeking, ever-pleading, never ceasing,
My plight, my daunting path, never easing,
On my knees beseeching, pursuing, begging for mercy and grace.

I’ll trudge forward, much as I always have,
Count my blessings, accept the good and the bad,
But what lesson, what message, have I missed?
Why do I continue to resist and insist?
If this is for gain, for glory, am I not glad?

I cannot help but question the plan,
A mere human, not God above man,
But my fate’s not my own,
A life not mine but on loan,
Lost and helpless, it’s all in Your hands.

You laid the foundations and offered a door,
Who am I to question or demand any more?
Hear my cries, see my plight,
Soothe my soul, dry my eyes,
Fill me up, overflowing, I implore.

Dance with me here for a time,
Memories fresh in my mind,
Opened the door just a crack,
Caught off guard by what does remind.



Monday, July 15, 2019

Gastroparesis Awareness Month August 2019: #RealGP


August is Gastroparesis Awareness Month, and this year, we are launching a #RealGP campaign to help highlight some of the issues in our community.

The #RealGP campaign seeks to dispel common myths surrounding Gastroparesis and illustrate the true physical, mental/emotional, and financial impact of this illness upon patients and their loved ones.

To make this effort a success, we will need your help! Your contributions can take several forms:

  • Photos depicting your GP reality
  • Statements and memes contrasting common myths (such as all GP patients are thin) with your personal experience
  • Stories of struggle with issues most people do not see (making the "invisible," visible, in other words)
  • Discussion of the mental/emotional aspects of this illness which are rarely (or poorly) addressed
  • Examples of financial hardships -- insurance, medical care, prescription costs, lack of employment, difficulty establishing disability, etc.

The manner and subject of your participation are only limited by your imagination, and this list is not exhaustive.  Please use the hashtag "#RealGP when sharing. Be creative and help us make an impact for our GP community!

Photo courtesy of Ms. Corina Castillo. If you would like a customized #RealGP frame, please comment on our community page post at https://www.facebook.com/GastroparesisFighting4Change/photos/a.1553567304910841/2359457690988461/?type=3&theater.

Wednesday, July 10, 2019

VIRTUAL ADVOCACY DAY


When: July 23, 2019
Where: Anywhere in the US
Purpose: Support HR 3396

This July 23, 2019, the Gastroparesis community invites you to support the millions of patients and their loved ones affected by Functional Gastrointestinal and Motility Disorders.

These disorders, which include Gastroparesis, Irritable Bowel Syndrome, Dyspepsia, GERD, and numerous other conditions, are frequently debilitating, and sometimes life-threatening, and they impact the physical, mental, emotional, social, and financial well-being of those affected. FGIMDs are chronic illnesses which impact people of all ages, genders, races, and socioeconomic backgrounds; yet there are often few (or no) effective treatments or cures, and the limited available treatment options come with serious side effects and risks. 

Please contact your congressional representatives in the House and request that they cosponsor the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396) and ask your senators to introduce a companion bill. 

This nonpartisan, budget-neutral legislation would promote awareness and expand educational efforts on our behalf and direct much-needed research funds to our communities so that we might finally be granted better, more effective treatments or cures.  You can find the text of the bill at https://www.congress.gov/bill/116th-congress/house-bill/3396.

You may call, write, or e-mail your representatives.  You can find the names and contact information of your representatives at https://www.govtrack.us/congress/members.  Please consider the following talking points when contacting your representatives: 

  • Identify yourself as a constituent and be direct about the purpose of your call/letter/e-mail. Ask to speak with the representative’s healthcare advisor if possible. 
  • Mention the bill by name and/or number and let your representatives know its purpose.
    • Briefly tell your personal story.
    • Mention that FGIMDs affect millions of patients and their loved ones.
    • Explain that the bill would direct potentially life-saving research funds to these communities in the hopes of finding effective treatments and cures and create “Centers of Excellence” designed to educate and promote awareness of these devastating illnesses.
    • Point out that the legislation is budget-neutral (or does not incur additional costs or deficits). 
  • Thank your representative for his/her time and consideration and make certain you have left your contact information in case you can provide additional input.

If your representative would like to pursue co-sponsorship, you can direct your representative to contact Mr. Ben Steinhafel, in Rep. James Sensenbrenner’s office, at ben.steinhafel@mail.house.gov and/or Ms. Carol Frauman, in Rep. Gwen Moore’s office, at caroline.frauman@mail.house.gov. 


Thank you so much for lifTing YOUR VOICES!





Friday, June 21, 2019

MARCH ON WASHINGTON, DC - VENUE CHANGE!

We have made the difficult decision to move the rally to an indoor venue (details below). We had to make that decision today in order to have adequate time to notify our vendors, our speakers, the Capitol Police, and our participants and to secure the new location. We are fortunate to have found an indoor venue, as adequate and appropriate spaces are quite difficult to snag at this late date and are very pricey.

We have been watching the weather forecast and speaking to our DC vendors, and even though we cannot be certain there will be thunderstorms (and this can change in an instant, of course), we feel there is considerable risk of bad weather. In the case of rain or storms, we would have to cancel the rally entirely as our vendors would not be able to deliver some of our equipment and we would be putting attendees at unreasonable risk. And, honestly, there comes a point at which attendance drops, foot traffic would be scarce, and attendees would simply be so miserable that the benefit of remaining outdoors would be small.

Unfortunately, the one thing we absolutely cannot control is the weather, try as we might. My apologies that we cannot pull off this event as initially intended. But please rest assured that we will do our best to still make this a memorable and significant event. This changes nothing in regard to our meetings with our legislators, the IFFGD conference, or the rest of the event schedule, and we are hoping for the strongest impact possible.

The indoor location does offer some advantages. Conditions are more comfortable for participants, as it is dry, spacious, air-conditioned, and offers on-site restrooms, chairs, tables, and beverage sales. We also have access to several screens on which we will loop a video of photos provided by our community. We believe this venue offers much and that we will still have a strong impact.

We will be sending out an e-mail to all registrants notifying them of the change, but we need your help in getting out the message.

Here is the NEW VENUE LINK: https://ivycitysmokehouse.com/. We will be in the concert section and will also have access to an outdoor patio should the weather clear.

THANK YOU ALL FOR YOUR PATIENCE AND UNDERSTANDING! SEE YOU IN DC!


Monday, March 18, 2019

GASTROPARESIS MARCH ON WASHINGTON


The Gastroparesis community will host an awareness rally on June 24, 2019, from 2:30-5:30 PM ET at Union Square (behind the Capitol Reflecting Pond) on the Capitol Grounds of Washington, DC.  Please join us as we shed light on our illness and promote better understanding and proper care.

The National Institutes of Health (NIH) estimates 5 million or more people live with gastroparesis, but, despite the numbers, gastroparesis is considered an “orphan” disease due to the lack of resources, support, and attention it garners.  Gastroparesis is little-known to the public and often misunderstood by healthcare professionals, researchers, legislators, and others who impact our care.  And, so, it is imperative that we, as a community, lift our voices in a united front to raise awareness and bring about much-needed change.

Gastroparesis, or “paralysis of the stomach,” is a gastrointestinal motility disorder in which the stomach muscles fail to contract and move food through from the stomach to the intestines at the proper rate.  It is a slowing of the stomach-emptying process marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety, extreme weight fluctuations, bloating, and stomach/abdominal pain, and it often results in debilitating and sometimes life-threatening complications such as malnourishment, dehydration, esophageal damage, erratic blood sugars, and digestive tract blockages. 

The most common known cause of this condition is diabetes, which accounts for about one-third of the cases.  Other known causes of gastroparesis include neurologic disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve.  Most cases of gastroparesis, however, are labeled “idiopathic,” meaning there is no known cause. 

Currently, there is no consistently safe, reliable, and effective treatment for gastroparesis – and there is no cure.   Available treatment options include often ineffective surgeries; medications which carry the risk of serious side effects; feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief. 

For additional information regarding gastroparesis, please contact the International Foundation for Functional Gastrointestinal Disorders (IFFGD) at www.iffgd.org or the Association of Gastrointestinal Motility Disorders (AGMD) at www.agmd-gimotility.org.

Register at https://bit.ly/2SXhaSs.  For additional details and inquiries regarding the “Gastroparesis March on Washington” rally, please contact Melissa Adams VanHouten at gpmarchondc@gmail.com.