LEARNING TO COPE

It is the helplessness that stings,
Feeling you can’t change a thing,

Watching your friends suffer and die,
While doctors and researchers stand idly by.

“It’ll get better…” but sometimes it won’t;
Often, we must simply learn how to cope.

Cope?  That’s a ruse, a trick, a cruel joke,
A deception, a distraction, an ill-conceived hoax.

The best we can do is survive another day,
Keep the darkness in check and death at bay.

They have no real answers, and so they proclaim,
“It’s all in their heads.  The patient’s to blame!”

They turn a blind eye to our struggle and pain,
Our protests ignored, our petitions made in vain.

They won’t lift a finger – perhaps they don’t care –
That our symptoms become harder and harder to bear.

No swift interventions, for we are “too complex.”
Best to pass us along, though we strongly object.

Above their pay grade; we must find someone else,
But our options are few and good ones far less.

Where are we to go and what are we to do,
When the “best in the business” haven’t a clue?

We languish and decline, left to ourselves,
Inadequate treatment – why is there no help?

We are here, and you see us; we’re aware that you do,
So, why turn your backs, when you know what we go through?

It is easy to get bitter and want to give up the fight,
When no one acknowledges or cares about our plight.

We are tired and discouraged, in need of relief,
Ill-equipped to lead the battle, worn down and weak.

Want to throw up our hands, but we can’t take a knee,
Can’t shield our hearts from the anguish we see,

Our people are in bondage, locked in a cell,
No solutions, little hope, lost and unwell.

We cannot falter or stay silent and meek,
Must press ever onward for the changes we seek.

So, we’ll steel our bodies, wasted and frail,
For the uphill battle and the rocky trails,

Spent and lacking, but determined to persist,
We’ll raise our voices and shake our fists.

That my friends, is learning to cope,
When your world burns around you and you hang onto your rope.

Though dismissed and abandoned, we are fierce and defiant,  
And they will never break us or extinguish our fire.

FROM THE OUTSIDE LOOKING IN

To you on the outside looking in,
Whose baseless judgment knows no end,
Who pretend to know enough to comprehend
Our pain and suffering, the depths to which we’ve been,
 
You who shake your heads at our great disgrace,
You with lashing tongues that diminish and abase,
From your lofty, healthy, pristine place,
Spout venom dressed up in trite cliches.
 
“A thing to behold, a blessing in disguise,”
So preach the saintly, the philosophers, and the wise,
As if our cruel illness could have an upside,
As if we’ve been granted some “soul-perfecting” prize.
 
You wield your “positivity” as if it’s a club,
“Chin up! Don’t you know you must overcome?”
No compassion, no mercy, no warmth, and no love,
Bludgeon my poor spirit till it grows cold and numb.
 
But when you’re the one who is trapped deep inside,
Inhabiting the world of the forgotten and cast aside,
Where from your brutal fate there is nowhere to hide,
Where your agony and misery cannot be denied,
 
The view appears somewhat different to you,
Murkier, muddier, and harder to see through,
Not the land of the living the others cling to,
The luscious world of wonder that you once knew.
 
We reach for a hand that might lift us up,
For an extended invitation to the joyous world above,
But rather than sweet grace, you offer only rebuff,
No matter our efforts, we are never good enough.
 
Ms. Sunshine, Mr. Righteous, I implore you to see
That your patronizing speeches and harsh enquiries
Serve only to punish, belittle, and demean;
They do nothing to cheer, inspire, or set free.
 
For we live in darkness, and every day is a chore,
Our spirits are dampened, and our bodies are at war.
We can’t readily accomplish what we were able to before,
Takes more time and great effort to replenish and restore.
 
What you see as simple and command that we do,
Is much harder for us, though we try to push through.
We are weak and depleted, gone the strength we once knew,
And every day as we waken, we start the battle anew,
 
We fight to move forward through tribulations and trials,
As survival consumes us and our lives pass us by,
We search to find meaning, know our lives are worthwhile,
It’s not as easy as it sounds to greet this all with a smile.
 
We daily face hardships you will never understand,
And must live within the limits our illnesses demand,
So, your calls to “greatness” and “helpful” reprimands,
Mean little, as we’re already doing the best that we can.
 
If you truly wish to help us, then bend down on your knees,
Pray for our healing, our comfort, our relief,
Acknowledge our struggles and offer blessings and peace,
Live among us, walk beside us, see our hearts, share our grief.
 
The barrier between us that wounds and divides,
Must fall away, and you must come inside.
Come down from the mountain, set your judgments aside,
Lovingly embrace us and try to see us through our eyes.
 
Your wagging tongues you must silence and control,
For you are called to comfort and not just to scold.
Inside, we need understanding and warm hands to hold,
Gentle spirits that nurture, loving arms that enfold.

"Coping" with the Pain

This morning, I was thinking about (and fuming over) an article I read a few years ago in which a physician commented that we are a society lacking coping skills, a people seeking "quick fixes" for our pain, one that needs to acknowledge that "suffering is part of life." He was lamenting the fact that patients came to him seeking pain-relieving medications (opioids, to be precise). His tone was mocking, condescending, and completely void of empathy or compassion, and I immediately thought to myself, "I wonder how he would feel if he lived with Gastroparesis for a spell?"

Now, I would wish this illness on no one, of course, but I am guessing the good doctor has never experienced the sort of chronic pain that I and so many in our Gastroparesis community daily endure. Perhaps I should grace him with the details...

My pain is overwhelming, send-me-to-my-knees, curl-up-in-a-ball, beg-for-mercy suffering for which no level of coping skills can prepare one. It is daily, ever-present, a physical and mental torture that confines me to my home, tethers me to a heating pad, stains my cheeks with tears, and transforms me into a raging, agonized beast who would give almost anything to rid herself of it.

It impedes sleep, and when (if) rest finally comes, it awakens me again in the nighttime. It haunts and taunts me with the knowledge that no matter how well I battled it today, it will be back again the next morning for another round -- perhaps stronger than the day before. Mentally, emotionally, and physically, it alters my being, changes who I am, and wears on me until I believe I can bear no more. And, yet, I must. I have no choice. It comes. I cannot will it away, wish it away, or pray it away. At best, I can lessen it to the point where I can function in some minimal fashion, but it will not be ignored nor placed on a back-burner. And it does not end. Ever.

So I take issue, O Wise Healer, with your suggestion that I have no coping skills and seek, instead, a "quick fix" to all of life's problems. Suffering is, indeed, a part of life, but I would wager that my suffering and that of many in my GP and chronic pain communities is nothing akin to what you have experienced. And after more than nine years of this torturous life, I am well aware there is no simple solution, no easy, consequence-free choice. But would a moment of relief, one serene, carefree, beautiful, blissful moment free from this pain be too much to ask, to expect? You hold the power to provide that, and yet you chastise us for desiring it.

I should probably clarify that I do not now, nor have I ever, used opioids. That's right, I have chosen to endure the "discomfort," as the article's author so blithely labels my suffering. But I do not make this choice lightly, and there are many days I yearn to take a different path. Many in my community do take that road. They turn to opioids (or other pain medications) because, without them, there simply is no quality of life. They cannot function in the most basic ways. They desire some small measure of comfort in a world of chronic illness where there is little.

Good Doctor, you think yourself so wise and strong because you have been blessed with a nearly pain-free, healthy existence. But take a moment to consider the "lessers" before you pass your profound judgment upon us, and, perhaps, view us from an alternate perspective -- one of compassion and empathy, free from judgment and assumptions about our motives and our abilities to "cope." We know a struggle few will ever experience.

Should we not have a voice in our care, in the path we walk? Patients are disregarded, ignored, imprisoned by pain, devoid of options... and this is unforgivable.

No, Good Doctor, I do not need any further instruction on how to endure pain. I am a trooper, a master of "overcoming," who is quite capable of "coping with" and "managing" pain; I am simply tired of having to do it! I want relief, an end to this madness. I want a cure.

Why is that so difficult to understand?

NORMAL

What is normal?
Yours or mine?
Crossed the boundary,
Never saw the warning sign.

To a world of madness,
That fluid fine line,
Now etched in permanence,
No exit to find.

Seizes your indulgences,
And all you hold dear,
From dawn into night,
Fraught with anger and fear.

Dreams and ambitions?
You won’t find them here.
Just crushing, dull numbness,
Behind the decorative veneer.

“New normal” they declare,
As if that’s something to behold,
But the memories, the good times…
I prefer the old.

They have no real answers,
But might keep you alive,
You might languish and struggle,
But don’t expect to thrive.

They have Band-Aids and tubes,
A whole chest of survive,
But the full life, the whole,
Cannot be revived.

Reduced to a photo,
A face on a screen,
Neither dead nor living,
But somewhere in between.

Well, that just won’t cut it,
This side of the line,
No thank you to compromise,
I want back my life!

Preconceived Notions Surrounding Social Media Groups

Far too many people have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions within them. In short, our groups too often get a "bad rap" that is neither deserved nor true.

Our Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. Many of our members have no other place to do so, as their families and friends dismiss and refuse to believe their struggle. The groups, then, are the one place where members feel understood and accepted. And far from being mere "gripe sessions," such posts might better be viewed as self-care and self-help, as they attempt to put into words the feelings that weigh heavy on the hearts of our members, who seek acknowledgment, compassion, and, sometimes, advice for moving forward.

The groups are not merely boards for "bashing" physicians, either, although that does occur. It can be difficult to find doctors who are both knowledgeable of the life-altering effects of GP and who care about the overall well-being of their patients. In addition, sharing bad experiences often generates discussions about how to better communicate with physicians and how to advocate for assistance, affords members the opportunity to suggest possible remedies to obstacles and problematic interactions, and flashes a warning sign about healthcare providers who consistently under-serve their patients.

Further, the groups are not hosts of misinformation, although we do combat that. By permitting members to ask questions, wonder aloud, and speak freely (or, at least, as freely as Facebook permits), we offer rational explanations, discuss research and information from credible sources, and share personal experiences and perspectives. We offer and flesh out what is accurate and inaccurate, what is helpful and harmful, and what is perhaps worth pursuing or dismissing.

And, finally, the groups are not "negative" pits of despair, although we see many who have been dismissed, mistreated, beaten down, and lack hope. We combat this by offering listening ears, helping hands, and understanding hearts. We would rather our members be outspoken about their worries, fears, and sense of hopelessness than hide their pain and suffer in silence. If we do not know, then we cannot help. We hear the cries that others have ignored and give voice to the pain so that "healing" can begin. But we also share uplifting stories, small and large "successes," and moments of overcoming. We hear of weddings, births, graduations, successful treatments, good days, and reconnections with families and friends. We express both despair and hope, as is the case with nearly all humans. We laugh, cry, commiserate, pray, and wish well.

In short, our groups are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both those who are isolated and lack basic knowledge and support and to those who wish to offer such knowledge and support.

And, so, I challenge and encourage healthcare professionals, researchers, legislators, the media, pharmaceutical and insurance companies, loved ones, and the general public to lose their preconceived notions and open their eyes to the benefits of social media-based support communities. We are so much more than you have imagined.

GASTROPARESIS AWARENESS MONTH 2022

Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is #GPWontSilenceMe.

As part of this effort, I would like to collect photos, quotes, experiences, and/or stories demonstrating what you would like doctors, researchers, legislators, policymakers, the media, and family/friends to know about living with GP and/or discussing the changes we, as a community, need to see.

This is your chance to speak! The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual — and they need to know what measures and actions you believe would help.

To submit, please share your entries at https://curegp.org/gastroparesis-awareness-month-2022/

Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2022.

Thank you so much for your help!

Humility

I wrestle with how to express myself in a way that I am understood without sounding as if I am simply whining or making excuses. It should not be this difficult, and the fact that it is tells me we are failing to reach people in ways that touch their hearts.

To the healthy people out there, please imagine with me, if you will…

You are unable to eat more than 500-750 calories per day on a good day and often go completely without nutrition for several days in a row. You are fatigued, nauseous, and in pain. Your sleep patterns are also often disturbed. Your ability to think, reason, and make good decisions are all compromised by this deprivation. You are at your wit’s end, hanging by a thread, barely keeping your head above water.

Yet, you must continue on with your regular activities. You must work, run errands, do household chores, and care for your children and pets. You must make it to meetings, significant events, and social affairs as well. You must seamlessly adjust to any crises or changes that arise, without voicing objection or hinting at hesitation. You must remain polite, professional, and poised at all times, despite your world crumbling around you.

You feel as if you are on the verge of collapse, but the world demands you go forward, never-ceasing, never missing a beat – and that you do so with a smile on your face and a pep in your step. You cannot show weakness, make errors, or fall short of goals… for if you do, the vultures await.

They hover near, seeking any opportunity to scold, berate, convince you that you are “lesser,” worthless. Their words are harsh and their judgment harsher. They await your failure with bated breath, ready to pounce upon your slightest mistake. They offer no grace, no mercy, no forgiveness, and no empathy. They are oblivious to your plight, to your struggles, because these do not match their own experiences. They are unwilling to look beyond their own interests and needs and consider the burdens of others. They are high and mighty in their ivory towers, blessed with health, opportunity, and good fortune. They are perfection in their own eyes. And you? You are a mere mortal, a sinner, outmatched.

I ask you with all the passion and humility I can muster, the next time you seek to judge me – or anyone in my community – pause and consider my circumstances. Try for a second to put yourself in my shoes, and when I misstep, do me the courtesy of showing me the benefit of the doubt. Exercise a bit of compassion, soften your glaring glance, and hold your lashing tongue because you who are so fortunate have little idea what I face. I fail, and I fail often, but I am trying my best, and you know not the effort I expend to simply survive the day, let alone stay on top of the game.