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.

ONCE IN DREAMS

From a dream, soft and tender, she awakes
To the harsh, bitter opening of the day
Feels its icy-cold breath on her neck
And clutches the covers close to her chest

In the realm of the dream, she would prefer to remain
But her body betrays her, and she protests in vain
No lingering in safety, reclaiming moments long-past
For time marches ever onward – forward, not back

She crawls begrudgingly out of her bed
Knowing all too well the misery that lies ahead
She is alone, as these days is most always the case
In isolation, disaffection, her demons she must face

Passes portraits, sweet smiles, as she treads lightly down the hall
But her laughter is missing, unlike the woman on the wall
Carefree snapshots of one she once thought she knew
Shuts her eyes, bites her lip; she is just passing through

Catches glimpses in the mirror of a soul frail and old
This spectre, this shadow, who will never be whole
The best laid plans, off the rails, it would seem
Ravaged by circumstance, victim of fate’s foul schemes

Nearly grasps, almost reaches, vaguely recalls
The woman she once was, prior to her fall
She was fresh and full of hope, passion, and fire
A force to be reckoned with, a spirit to admire

Now saddled and tamed, she relives and regrets
Retraces, to no avail, her missed paths and missteps
She harbors a hole in her heart that won’t heal
Struggles to stay present – some days, to simply feel

Her thoughts never cease to remind her of her pain
Of all she has lost and how little remains
She clings to the remnants as if they were gold
But she finds herself slipping, nothing left to hold

The memories are dreadful; they punish and wound
They rip and they shred; they refuse to soothe
She is trapped in a loop, cannot scale the walls
Confined to her cell, to a prison lacking bars

She longs for serenity, for long-lasting peace
For stability, security, and a sense of relief
She yearns for the normal, for one more good day
But her hope for that future is fading, wasting away

She believes in her Maker, knows something better lies ahead
But she stumbles, lacks wisdom, and sometimes doubts instead
Seeking meaning in this life, her nagging questions persist
Trusts the future, but until then… how does she exist?

She drags through the hours, weary and spent
Endeavors to understand this cruel hand she’s been dealt
She flounders and fumbles and tries hard to resist
The notion it’s for nothing, that something’s seriously amiss

She does what she can to ease the suffering of others
But whether it matters at all, she often wonders
Is she making a difference? Are her efforts well-received?
Has she learned all the lessons? Is her Author well-pleased?

By the end of the day, she has no more left to give
And only hopes that her failings all might forgive
Lies back down in the embrace of her warm open bed
And once again invites the dreams that still live in her head

This Is GP

It is physical agony beyond compare.  It is days and nights spent on the bathroom floor, crying, pleading for someone to make the crippling pain, nausea, and vomiting stop.  It is being too exhausted to focus, too drained to complete chores, and too weak to climb up the stairs to your bedroom.  It is hungering for food, relief, a moment’s peace.  It is praying for an end to the never-ceasing torment while knowing in your heart you will face it again tomorrow.  

It is frustration and anger.  It is watching others eat, work, and play, and wondering why they were blessed with such normalcy while you are fated to be ill.  It is seeking independence but knowing you must now rely on others to perform basic tasks.  It is seeking consistency but realizing you are subject to the whims of this cruel disease and your symptoms can worsen in an instant, destroying the best-laid plans.  It is pushing yourself to the point of collapse and going without eating some days, though you know you should not, just to show this disease who is in control.  It is being endlessly asked if you are okay, listening patiently to well-meaning yet misguided souls offer “remedies” and unsolicited advice, kindly overlooking their pronouncements that you “just need to eat,” explaining the nature of “chronic” illness time and time again, and ceaselessly trying to convince those around you that you might never be “okay” again, not in the sense they imagine.  It is doing everything you are supposed to do – following the diet, exercising, resting, taking your medications, keeping your medical appointments – but still receiving no healing.  

It is multiple levels of worry and fear.  It is checking the menu in advance and wondering how it will look when you only order a drink.  It is searching for a bathroom as soon as you enter the building.  It is carrying emesis bags and a change of clothes in case of accidents.  It is reading the room to know how embarrassed you will be should such an incident occur.  It is checking your watch because after an hour or two you might not be well enough to drive yourself home.  It is worsening symptoms, comorbidities, and flares that grow longer and are more frequent.  It is scary-low blood pressure, poor lab markers, shaky footsteps, and mental confusion.  It is 500-calorie days, liquid diets, tube feedings, and TPN.  It is ER trips and hospital stays that leave you wondering how long you can survive this.  It is not knowing the cause and believing that doctors will never find it.  It is watching your GP friends struggle and sometimes die – and pondering whether you will be the next green candle on someone’s wall. 

It is disappointment and lowered expectations.  It is trying a food again and again, hoping against hope that this time you will be able to tolerate it, and then dealing with the pain of your mistake.  It is going to doctor after doctor, trying treatment after treatment, eagerly anticipating relief, only to have your dreams dashed when it makes no difference.  It is the look of dissatisfaction you see from your boss when you cannot complete an assignment, from your friends when you call to cancel, and from your family when you cannot do your fair share.  It is being unable to meet the demands placed upon you by yourself and others, though you wish with all your heart you could, as you once did.  It is watching your world shrink before your eyes as you constantly try to readjust.  

It is grief and loss.  It is knowing that despite your best efforts, you won’t make it to your job tomorrow, that you will miss your daughter’s play later this week, that the vacation you planned for next month will be put on hold, and that you will be absent from the family Christmas gathering again this year because you are unable to function.  It is wishing your friends would invite you over like they used to but knowing you have disappointed them one too many times.  It is yearning to share a meal with your family, just a simple meal, but being nauseated by the mere smell of food.  It is lying on the sofa on your anniversary instead of spending the evening out and then wondering why your spouse does not look at you quite the way he used to.  It is gazing into your child’s pleading eyes and for the millionth time saying, “I can’t.”  It is the loss of your career, your social life, your enjoyment of food, your spontaneity, your independence, your sense of security, your dignity, and your peace.  It is desperately wanting your old life back, longing to have just one more carefree, symptom-free, “normal” day like the ones you once took for granted. 

 

But Gastroparesis is more than this…

 

It is a teacher of compassion and empathy.  It opens our eyes and our hearts to the struggling souls who surround us who need to be heard and understood.  It demonstrates the depths of physical and emotional pain and makes us far more open and responsive to the similar needs of others.  It admonishes us that there are failures in our approach that must be addressed, that all lives are valuable and all people are deserving of dignity, and that the chronically ill are not merely statistics but living, breathing beings who still have hopes, dreams, and goals.  It develops in us sensitivity, understanding, and a sense of responsibility to those around us.  And it creates in us a desire to make it all better, to serve, to educate, to guide, to dedicate ourselves to easing the pain of others; it reveals meaning and purpose in an otherwise seemingly random world. 

It is a developer of appreciation.  It reminds us that we are not promised another day and that the people and things we once took for granted are precious.  We let go of grudges and embrace our loved ones without restraint because we have learned there is no “perfect time” to tell those who matter that they do.  We embrace the small, beautiful moments because they are so few now.  We pause, soak them in, feel them to the depths of our souls. We seize each second of joy and fully grasp the significance of what we once thought mundane.  It is the ordinary that is special, priceless, and it is sometimes only when we have lost this that we understand.

 It is an encourager of resilience, perseverance, strength of will, and determination.  For despite the vast hardships and obstacles before us, we daily overcome.  We wake, adjust and accommodate, and continue on, even when all seems bleak.  We face our sorrows and our fears, push the pain and fatigue to the far corners of our minds, dust ourselves off, and find paths forward.  We speak out and advocate for proper care and decent treatment for ourselves and others, and we fight for cures so that not one more precious soul must share this nightmare.  Day after day, we endure adversities we never dreamed we could, and we emerge stronger for having survived these trials.  We hold onto defiant hope, earned through fortitude and determination to alter our fates, and we endeavor to one day live the lives that were so brutally stolen from us, or in the absence of this, create new, meaningful lives borne out of this suffering.  We stubbornly refuse to relinquish our dreams and choose, instead, to excel in even the darkest of times. 

#ThisIsGP

Lilly

She enters in the midst of the storm,
Raging at the injustices of the day,

Too much homework, unwarranted grades,
“Who uses this stuff anyway?”

“Mom, they made her cry,” she begins,
“She was lonely, sad, and all alone,
No one seemed to notice or care,
So, I went over and asked her to join.”

In a flurry, singing songs of her day,
Babbling on, chattering feverishly and free,
Throwing hands up, arms swinging wildly,
She exuberantly brushes right beyond me.

She tells the tales of her woe,
Then speaks of moments of gladness and joy,
I try desperately to take it all in,
But I am helplessly, hopelessly slow.

The whirlwind gradually passes,
She is weary, exhausted, spent,
Up the stairs, she sleeps finally in peace,
Lovely spirit; she is indeed Heaven-sent.

Watch her slumber, though she is unaware,
As I recall fondly the long-ago years,
When she was younger and oh-so-innocent,
Close my eyes and battle back the tears.

I once held her closely, cradled in my arms,
And rocked her slowly while she slept,
Kissed her forehead, touched her toes,
A perfect angel I was meant to protect.

It is Christmas and we are driving,
He is freezing, abandoned to the street,
“We have to help him. He is starving,
Can’t we just give him enough to eat?”

Don’t have much, but we oblige,
And still, it is not enough,
Money is not the answer,
“Mom, he needs a hug.”

She stoops to accept and embrace him,
Tears glistening brightly in her eyes,
He is taken aback, astounded,
The look of wonder and surprise.

She lingers, reluctant to leave,
But we must end this – what more can we do?
She has a million questions, so disturbed,
I want to answer – how I wish I knew.

And still, this homeless man haunts her,
Though many years have gone by,
She revisits, relives this moment,
Never leaves her, no matter the time.

Skip my memory, fast-forward,
She is in the yard, saving worms,
It is raining, and “they will drown,”
So, she helps them, as she has once sworn.

She’s in the bathroom, getting ready,
“Daddy, please help the bug,”
“Mommy, don’t kill the spider,”
So compassionate and full of love.

Elementary, middle, and high schools,
Academics, sports, and clubs,
Bumps, and bruises, and heartaches,
Somewhere along the line, she grew up.

Becoming the person she’ll one day be,
Separate thoughts, different views all her own,
Branching out from the old and familiar,
Stepping away from the world she has known.

I marvel at her grace and her beauty,
As I help her get ready for her first prom,
I am anxious and nervous, feel I’m losing her,
“He’s nice, so please don’t worry, Mom.”

Her bicycle gathers dust in the garage,
It has now been replaced by a car,
I prepare for the day she will leave us,
As we assess colleges both near and far.

Where is my little one, my child?
It seems like a dream, all a blur,
The young woman now standing before me,
Tells me time has flown swiftly and sure.

I bend down and whisper I love her,
Begrudgingly go back to my bed,
Hate to leave her and pray she is safe,
That we have many good days left ahead.

Morning breaks and the tempest begins,
She’s in a hurry, a bustling gust of wind,
But I am shouting, crying, sick, and drained,
Wishing illness away, I am at my wit’s end.

Silent and unsure, she enters the room,
No solutions or wisdom, nothing to discuss,
She rubs my back and embraces my shoulders,
She is sufficient – in this moment, more than enough.