TURN THE PAGE

She pens her poetic story,

Marks the callous pages of time,

Bittersweet winding journey,

Inscribed upon her restless mind.

Chronicles her ever-changing existence,

Notes the infirmities and grievous pain,

But her tale runs far deeper than this,

For of this saga much more remains.

Turn the page on what you are thinking,

This novel does not end that way,

Life is seldom what we envisioned,

And the best-laid plans can go astray.

Turn the page.

It began as most all accounts begin,

A child with high hopes and dreams,

Plans for a long and bright future,

Life wide-open and joyful, it seemed.

No time to stop and ponder,

Whether the story was compelling,

Adding chapters at whim, at liberty,

On unhappiness, there was no dwelling.

No concern about the lesser beings,

Mere minor characters to she,

Bad reviews and strong critiques,

Not considered, not noticed, not seen.

Turn the page.

But swiftly fly the pages,

And a new chapter soon began,

No foreshadowing this turn of the tables,

Takes place in a dark, foreboding land.

Turn the page on the life that she once knew,

Gone the carefree, the light, and the green,

Trapped in a desolate desert,

New chapter, new verse, new scene.

Turn the page.

The tone and the mood have been altered,

Cheerful setting now shadowy and bleak,

A land full of agony and misery,

One from which there is little relief.

This chapter, indeed, feels the longest,

Though the page count is relatively brief,

Not a grand proportion of the story,

But yet the focus, she somehow believes.

It is suspenseful and intriguing,

Though quite gloomy and melancholy,

It speaks of opportunities missed,

Highlights shallowness and foolish folly.

It encompasses the tear-stained pages,

Which recount the troubles and deep despair,

Of a heartbroken soul who does flounder,

Searching for meaning, in profound disrepair.

Turn the page.

The pages seem ragged and tattered now,

The cover is faded and worn,

The binding is barely holding on,

The edges are frayed and torn.

But the narrative has taken a thoughtful turn,

Greater definition and sensitivity than before,

The protagonist is growing – and learning,

That in a meaningful life there is so much more.

Turn the pages and keep reading onward,

Though the setting is still exacting and cruel,

The plot is growing ever thicker,

The epic novel ever richer and truer.

Turn the page.

Our heroine is gaining wisdom,

Acquiring compassion and full perspective,

She no longer wears heart blinders, protectors,

Becoming sincere, empathetic, reflective.

Turn the page on all the grief and anger,

She longs for a shiny brand new edition,

Delete the harshness and omit the anguish,

Insert new hope, with the author’s permission.

Turn the page.

Turn the page on past chapters and sections,

Too difficult to remember anyway,

All new content and improved format,

Are the goals for this castoff castaway.

Turn the pages and write the future,

Not just for herself but for those who surround,

Change the setting and the well-worn theme,

For the whole community she has now found.

Edit out the pain and suffering,

Introduce a world fresh and anew,

One with hope and gentle tenderness,

With understanding and mercy through and through.

Turn the page.

Our heroine is now weak and shaken,

For she thought that everything she knew,

But she was most sadly mistaken,

Her grand plans and lofty values all askew.

She believed herself to be the novelist,

Though deep down she should have known,

She was nothing more than inconsequential,

The True Author holds the author’s throne.

And He is an accomplished playwright,

A true poet, a genuine Nobel Laureate,

A superior author and skilled illustrator,

Whose stories are nothing short of glorious.

Turn the page.

The story is of yet unfinished,

But the foreshadowing is rather clear,

The heroine’s one true mission,

Begins from the new beginning point – here.

All before was but an introduction,

Setting the stage for our protagonist’s role,

She does not belong among the others,

She does not need to be physically whole.

Moves the plot along very nicely,

When the heroine recognizes the theme,

To support, serve, and guide the devalued,

Though minor characters they once seemed.

Turn the page.

She is made whole through the mission she is given,

And only then is her tale at last complete,

Only through her attendance and dedication,

Does the bittersweet once again become sweet.

Turn the page on the life that she once knew,

Filled with suffering, questioning, misery,

One with all manner of horror and pain,

New chapter, new verse, new scene.

Turn the page.

The pages have now all been published,

For all who have eyes and care to see,

Our heroine is no magnificent author,

But a master storyteller is He.

INVISIBLE ILLNESS: DEFIANT HOPE

One of the themes that has been suggested for Invisible Illness Awareness Week this year is “Defiant Hope.”  But what is defiant hope?  Well, to me, it is akin to “hoping against hope,” believing in something most people would say defies all odds.  It is finding a way to face a future that is, perhaps, mere survival at best.  For those of us who live with serious invisible illnesses, such as the Gastroparesis which seeks to destroy my own body, it is a way of life.

Beyond aspiring to survive the day, those in my community seek defiantly, rebelliously, to live a full and meaningful life in spite of this cruel disease.  We hope for strength and stamina to face the pain, nausea, and fatigue that we daily confront.  We hope to be able to push our symptoms to the back of our minds and deep inside our bodies and somehow be able to complete the tasks of the day, or, on a particularly successful day, attend some sort of outing or event.  We hope to have the courage and will to interact with our families and friends in meaningful ways, show up for our jobs, attend church, and join in the other many activities we participated in before our diagnosis.  We hope to enjoy a bit of life instead of simply enduring it.

But rather than further define defiant hope, I offer the following illustrations.  Defiant hope, for those of us with invisible illness, is:

*the woman who enrolls herself in college courses, though she knows she will struggle greatly to attend classes and complete the work, because she wants to fulfill her dream of creating a nonprofit that will benefit others in the community

*the mother who rises every morning and seeks medical answers for her two children who, like her, have been afflicted with this devastating illness, despite being told time and time again that “nothing more can be done”

*the husband who, because his wife cannot bear to lose him, fights back tears and musters up the courage to drive himself to the local ER where he knows (almost) beyond a doubt they will mock, accuse, and offer little assistance

*the mother who undergoes surgery after surgery, sacrificing more of her body and soul each time, so that she can survive a little longer and take her children to their baseball games and NASCAR races for a few more seasons

*the father who drags his tired, beaten body to work every day and faces the less-than-understanding glares of his co-workers and superiors because he is the sole income-earner and has small children at home, and who dreams he can get through this day, this month, this year, for their sake 

*the woman who sends cards to others in her community, despite barely being able to hold her head up, because she wishes to add cheer to their otherwise dreary and lonely days and believes beyond reason that this simple act of kindness will give others cause to go on hoping

*the daughter who pulls herself away from her mother’s hospital bed and forces her own tired and failing body to post awareness articles, memes, and encouraging words on our social media sites because she believes this sharing will enlighten others and spur them into action that will one day save us

*the husband who spends his life-savings and sacrifices his comfortable retirement plan to take his wife to the newest, best treatment facility in the blind faith that the doctors there will know of a new or more effective treatment that the other facilities somehow overlooked

*the child who begs her sick and down-hearted mother to please try a bite of the food that has failed her a thousand times before because, “Mommy, this time might be different”

*the wife who books a flight for her family’s next vacation in a faraway paradise, though she cannot for the life of her figure out how she will make it to the airport, let alone survive the entire two weeks of adventures, and who knows she might have to cancel before all is said and done

*the cousin who begs, pleads, and ultimately nearly forces his loved one to take her medicine, regardless of the fact that it is obvious to both of them it is no longer effective, and who picks her up and carries her to the hospital rather than giving up when it does indeed fail

*the advocate who wills her frail, weak soul to pick herself up, seat herself at her computer all day long, every single day (as she has done for the last nearly 3 years), writing, e-mailing, tweeting, and calling every medical professional, politician, government agency, and media source she can find about her illness, despite rejection after rejection, because she defiantly believes that someday, someone will help her make the “invisible” visible

Yes, my community defiantly clings to hope.  Beyond logic, we hope to someday make our invisible illness visible to those around us who do not yet see.  If they are not willing to open their eyes to us, to our illness, perhaps they will open their ears and hear us.  If we are loud enough, persistent enough, and refuse to go unnoticed, maybe we can one day make ourselves known to them.  So, we continue our rebellion.

We defiantly hope for a cure and anticipate that medical professionals will gain understanding of our illness, that we will no longer be viewed as hypochondriacs or drug-seekers, that we will be given the medications and treatments we know to be helpful for our condition, that our pain will be adequately addressed, and that we will be guided toward options that can provide us with better quality of life.  Further, we defiantly expect that the FDA will not deny us those options, that our insurance companies will cover them, and that pharmaceutical companies will search diligently for safe, effective treatments and refuse to charge outrageous prices for our life-saving drugs.

We defiantly hope to be financially secure despite the costs associated with our illness.  We hope we will not lose our jobs, homes, and possessions due to the effects of this disease.  We hope, one day, Gastroparesis will be treated as the devastating disability we know it to be, that our government officials will recognize the seriousness of our situation, and that we will be granted necessary research dollars and policies beneficial to us.

But above all, we defiantly dream of a day when we will be understood, appreciated, and cared for by all those who surround us and impact our lives.  We long to see our children grow up, grow old with our spouses, realize our dreams and goals, and once again enjoy life without pain, nausea, and fatigue.  We defiantly hope for a full life, a bright future, and an end to our seemingly ceaseless struggle to merely survive.  I defy you to take that defiant hope from us.

***************************************************

Please Note: Invisible Illness Week is September 26-October 2, 2016.  You can help raise awareness by posting your stories, memes, pictures, and articles on all social media sites and by using the hashtags #InvisibleIllness and #IIWK16 on Twitter.  If you would like to join an event, Mental Health and Invisible Illness Resources is hosting the following on Facebook: https://www.facebook.com/events/552105701663138/.  Thank you so much for your time and attention!

THE HUMAN STATE

I know what it is like to deal with “difficult” people.  As an administrator in several online Gastroparesis and chronic illness groups, I have addressed the arguments, accusations, and hurt feelings caused by their inappropriate and downright harmful behavior on several occasions.  I see the havoc these souls wreak on a daily basis.  Further, in general, I recognize that, for whatever reasons, there are those among us who seem to see only the negatives, who behave selfishly and self-importantly, who viciously attack others for seemingly no reason, who pout, spew all sorts of venom, and never seem to be able to get along with any of the people around them – even the ones genuinely trying to help.  But while I am frequently tempted to renounce these people, deep down, it pains me to do so, and I long for a better way, a more perfect path.

I cannot help but think that the trying people who sometimes surround us must be seen in a different light.  I recognize that poor behavior is never acceptable and that it is reasonable to expect others to be kind regardless of their history, current circumstances, and feelings, but at the same time, I also understand that no one can ever really know the factors and events that have shaped others and have made them the beings they are.  No one can know the intimate and secret details of another’s heart; no one can feel the deep hurt, the anguish that overwhelms them; and no one can truly experience their lives in a wholly personal manner. In short: you do not know another man’s story until you have lived it.

So, rather than outright reject negative (and sometimes hateful) people, I strive to take an alternative approach.  I am not always successful, nor do I consistently live up to the ideals I espouse, but I endeavor to live better, always.  I make my fair share of errors in judgment, and I sometimes take actions I later regret. I lose patience and am short with people on occasion. I let doubts creep in from time to time – and I always, always feel inadequate.  But I remind myself that people, including me, make mistakes.  We all have shortcomings, but we are all human beings, worthy of dignity, gentleness, and compassion simply by the nature of our existence. 

Now, let me be clear: I do not tolerate mistreatment, nor do I allow myself to be used, demeaned, or abused.  I am not a doormat; yet, I do not see my fellow human beings, even the difficult cases, as disposable and do not easily write them off.  After all, who else will care for them?  Indeed, I am my brother’s keeper.  And I have found that people are not purely “good” or “evil.”  They are, rather, a complicated and messy mixture of both, individuals worth knowing despite their flaws and frailties.  And while I seek to respond gently, uplift, and never harm, I am not a gushing stream of optimism, and I rarely direct “positive thinking” quotes and memes at those struggling.  I find these shallow and less than heartfelt, and I do not believe they strike at the heart of the matter or touch the souls of those in distress.  I do not see the value in trite sayings that leave people cold and unaided. 

Instead, I seek a more genuine approach, and I deal with people honestly, though as tenderly as possible.  I try to recognize that people sometimes lash out when they are in pain – physical or emotional.  There are those who never seem to have a tender word to say nor a helping hand to extend.  They intentionally and unintentionally offend those around them or take offense at words that were not meant to insult.  They distance themselves from others emotionally and have not the slightest clue how to return a kindness that has been offered them.  They fail to consider the feelings of others and shy away from giving and receiving sympathy. 

I further remind myself that people often fear the world and the people around them.  They have been wounded by the harsh actions and hostile words of others.  They are afraid to reach out, open their hearts and hands to those who truly seek only to aid them because they have not often experienced the grace and understanding that is being offered to them.  They do not value themselves or sense their worth because they have been treated as valueless and unworthy.  They have been mocked, berated, abused, and rejected time and time again – frequently by the very people who were tasked with caring for them.  Life – people – can be cruel and unfair.

I likewise tell myself that because no one has had identical experiences to my own, not everyone thinks or believes the way I do. Good people can and do disagree.  Beyond that, at times, people have weak moments or moments of anger, and they act impulsively. They behave irresponsibly, overreact, and wound others. This is regrettable, but is it really unforgivable? Must we jump on every small transgression?  Must we take offense at every spoken word?  The mistakes made by these “flawed” beings do not render them any less worthy of consideration, understanding, or support, nor do they justify harboring feelings of betrayal and anger or, worse yet, seeking retribution. 

We are imperfect human beings, but for the most part, we are all striving to get through the day the best way we know how.  I make every effort to focus on the good in people and spare them my judgment and the lashing of my tongue.  For, it seems to me, what the “difficult” people (such as I, on occasion) need least of all is to be surrounded by those who would repeatedly remind them of their failures and shortcomings, to again face accusations and cruel remarks that point only to their inadequacies and their weaknesses.  What they need far less than anything else is to face taunts, accusations, cruel rejoinders, exacting tones, screaming tirades, and vengeful responses.

So, I beg you, when someone offends you, or mistreats you, or reacts less than perfectly in any way, rather than cast-off and disavow them, please try to pardon them. Forgive them because it is the compassionate thing to do. Forgive them because they are perhaps struggling with a background and experiences you know nothing about. Forgive them because they are sick and tired and weak and hurting and lashing out in fear and frustration. Forgive them because they may have experienced all manner of injustice and inhumanity in their lives. Forgive them because they are human beings. Forgive them because you can and because it will make you a better person. 

Pardoning others for their transgressions and accepting them with all their weaknesses and flaws – that is what I find to be of value and how I endeavor to behave.  I long for a community that is a welcoming place for all to come and share their concerns, joys, heartaches, weaknesses, and doubts without fear of judgment, scolding, reprisal, or rejection – a community that is a safe haven where people feel comfortable sharing their innermost concerns without the fear of negative repercussions and spiteful responses. I yearn for an environment where we openly and honestly discuss anything in our lives that disturbs us, concerns us, fascinates us, uplifts us, or keeps us from healing, one on which we are respectful of one another, even when we disagree. Minor disputes do not have to become wars and excuses for our own wicked conduct.

I believe, albeit with great effort, we can create this sense of community.  Not everyone will respond to our overtures, of course, but it is perhaps our best hope at bringing people back into the fold.  Our world can never be perfect, but it can always be improved.  We can learn to exercise compassion and strengthen the bonds between us. We can learn to treat those “difficult” souls ever so gently and demonstrate for them a better way.  Rather than division, we can choose unity, forgiveness, acceptance, and grace, and recognize what we all have in common: hardships, deficiencies, failings, shortcomings, life in a fallen world – the human state.

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.