For My Loved Ones, I Wish...

I was looking over some websites for caregivers recently and came across a topic I found interesting.  The host was discussing how some make Christmas "wishes," and inquired: “What is your wish for those who care for you?”  Now, I am not certain how my husband and daughter would feel about being categorized as "caregivers" in any formal sense, but they do care for and about me, so I believe that qualifies.  And while I appreciate the never-failing support they offer me during my darkest days, I have never really attempted to spell out in any proper manner what I wish for them.  I spent quite a bit of time contemplating that this weekend, considering and evaluating what my hopes for them truly are, and though my list is no doubt incomplete, here are a few of my fondest wishes:

* Above all else, I wish for them to know and genuinely feel the love and appreciation I have for them.  I value them above all others, and despite my sometimes harsh words, raw emotions, unreasonable expectations and demands, and temper tantrums to the contrary, they have never once truly disappointed me in any noteworthy way.  They are the constants who add stability and meaning to my life, the ones I know I can count on regardless of circumstances, no matter how difficult my days.

* I wish for them to grasp how special, how exceptional, they are for finding the strength to withstand the cruel realities of this illness, to persist despite the horrors of Gastroparesis which affect everyone in my life, but them far more than any others.  They bear physical, emotional, financial, and spiritual burdens which directly flow from my diagnosis and which cannot be ignored but must be daily addressed.  They are meaningfully and significantly impacted by my poor state of health; yet, rather than abandon, neglect, or disregard me, they exert endless effort to include, forgive, and accommodate me, and they fully believe their lives are better off with my presence than without.  Many times and in many instances, they have sacrificed material possessions, leisure activities, luscious meals, free time, and emotional peace because their love for and commitment to me outweighs their focus on “self.” 

* I wish for them to live free from guilt and with a focus, if only for brief spells, on their own well-being and happiness rather than feeling as if their lives must always center around me and my wretched Gastroparesis.  My husband and daughter are both brave and kind for silently and patiently enduring the limitations placed upon me and upon them because of this disease.  And though I am the one who cannot eat, perform typical (yet energy-draining) household chores, run errands, attend events, or participate in any number of activities which used to be commonplace, they are impacted by this as well.  They do their best to hide and downplay it, but I see the guilt and sorrow which haunt them when they choose to engage without me in celebrations, family gatherings, and school happenings, or, on the other hand, when they forgo those events because they are needed at home or do not wish to leave me alone during the holidays or on other such occasions.  In truth, in my heart, and in spite of my sometimes selfishly voiced objections, it is my hope that they pursue the activities and endeavors which bring them joy, even if those pursuits do not include me.  They have lives, dreams, and goals of their own, and they have already forfeited so many of these for my benefit.  I want them to live the most “normal” lives possible without fear I will feel abandoned or excluded and without regret that they somehow “missed out” on opportunities. 

* I wish them peace in their hearts and contentment in their souls regardless of circumstances and outcomes.  Hardships abound, and my fate may not be the one we would all prefer, but they must be at peace with whatever occurs, as I am.  That sort of serenity comes from inside and from knowing there is something beyond our current state, a purpose for our existence, an ultimate plan for our being – and it is possible to rest in that knowledge.  It is difficult to endure adversity, and it is almost never welcome, but one can experience overall happiness and tranquility despite the trying days, and this is my hope for them.

* Lastly, I wish – hope beyond hope and dream beyond what is rational – that one day, we will all live free from the punishing effects of this illness, that there will be a cure, or a remission, or merely a more effective treatment, which allows my family to once again participate in long abandoned endeavors and which frees our lives from the burdens so cruelly imposed upon us.  And short of this, I wish for them joy in the times we have together and certainty of knowledge that I am grateful for each moment spent with them, even when I fail to express this. 

* To my husband and my daughter: What we have endured together has strengthened us, sealed our commitment, united us for eternity.  You are my one wish come true, all that I value and all that I love, happiness, contentment, fulfillment, and delight.  You have made my life worth living and, despite the hardships, the sorrows, and the ever-increasing difficulties, I would trade this life for no other.  

MANAGING THE FINANCIAL BURDEN OF THE HOLIDAYS

The holiday season can be a financially challenging time for those who live with chronic illnesses.  Many of us are disabled, unemployed, and/or have high medical expenses and are financially strained under normal conditions, but especially so this time of the year. And though we would love to purchase goods and presents for all, we struggle to pay for our basic medical and living expenses and cannot afford to spend extra on things above and beyond the essentials for our survival. Oftentimes, our loved one extend gracious invitations indicating we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.  How are we to cope?

Beyond relying on the understanding and compassion of our family members and friends, there are several steps we might take to minimize the pressure and guilt we feel and to participate in the festivities and gift-giving in meaningful ways.  I offer the following suggestions for your consideration:

* Let go of others’ expectations and refuse to feel obliged to participate in any activities or exchanges which stretch your finances beyond what you can bear.  There is no need to feel guilty for circumstances beyond your control, and protecting your financial well-being is an act of self-care which is borne out of necessity. It is perfectly appropriate to offer a polite refusal: “My apologies.  I am afraid I will not be able to exchange gifts this year.  It has been a rough spell for us financially.”

* If you choose to participate, refuse to exceed your budget no matter how small.  This may mean sacrificing the “ultimate” gift you had hoped to purchase or giving gifts to fewer people than you would like, but in the long-run, it will save you from being in a financial bind and allow you to avoid the additional stress when payments you cannot reasonably meet come due.

* Suggest family or groups of friends draw names for gift exchanges rather than buying for everyone in the circle.  This will allow you to spend a larger amount on one gift instead of divvying up limited funds among many.  Or perhaps “White Elephant” exchanges of used or “re-gifted” items would be a welcome option.

* Purchase small gifts throughout the year when you have additional funds available and set gifts aside until holiday time.  That way, the expense of gift-giving will be broken up over time and will not feel so overwhelming when the holidays arrive.

* This might be obvious, but shop for sales.  Many stores have fabulous deals on Black Friday (the day after Thanksgiving) and Cyber-Monday (an online version of Black Friday on the Monday after Thanksgiving).  Check clearance sales both in-store and online, as some are exclusive to one location.  For additional savings, look for free shipping offers and percent or dollar-off coupons in local newspapers and on store websites.

* If your goal is to purchase for everyone on a long list of recipients, and you cannot bear to omit anyone from the list, perhaps very inexpensive gifts are an option.  Thrift stores (such as “Good Will”), overstock and limited-stock stores, and discount retailers (such as “Dollar Tree,” “Dollar General,” and “Dollar Time”) offer low-cost goods and one-time deals which might suit your needs.

* If you have children and cannot afford presents, contact charities such as the Salvation Army, church groups, or clubs/organizations which operate assistance programs.  A good place to begin your search for relevant charities is with the United Way.  This organization can often direct you to local charities which might be of assistance.  Food pantries can also cut down on the cost of preparing meals.

* Consider gifting homemade goods, crafts, or foods.  If you have a talent, share it with those you love.  Baked goods, hand-made ornaments, crocheted scarves, paintings, poems written on fine paper, well-intentioned notes in a hand-made or virtual cards, and other such items are often welcome and appreciated for the skill and effort they require.  After all, such presents cannot be found at retail stores and can be personalized to fit the exact tastes of your recipient.  They are unique and from the heart.

Whatever choices you make, please remember that, ultimately, the holiday season is not about the material items we give or receive; rather, its true meaning is found in giving of ourselves, our time, and our companionship.  A precious moment spent with loved ones is an unmatched and priceless gift of joy.

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ADDITIONAL RESOURCES

*https://helpingamericansfindhelp.org/christmas-assistance-help/

*http://www.makeuseof.com/tag/7-top-charities-that-offer-online-christmas-help-for-low-income-families/

*http://charity.lovetoknow.com/Charity_Christmas_Assistance

IN THE SHADOWS

Death is a nearly tangible being to me, an ever-present dark figure who lurks in the shadows and creeps nearer to me daily.  He knows me intimately and follows my every move.  He is constant, ubiquitous, endlessly prowls the corners of my rooms and my mind.  He looms in the background of every celebration, each joyous event.  He haunts my waking moments as well as my sleep, refusing to grant me peace, and robs from me carefree moments and untroubled thoughts.

At times, he seems warm and welcoming – promises such solace and release.  He speaks delicately and sweetly and softens me with his offers of relief from my pain and my burdens.  He waves his hand and paints a picture of glorious liberation, which is both sweepingly beautiful and horrifyingly deceptive.  For though I welcome sweet escape, an end to this anguish, I am still conscious of my yet unfulfilled purpose, as I await my appointed time.  And though his lips drip with honey, I feel the sting his fate brings, know the sorrow of those who will be left behind when I finally meet my demise. 

Oh, yes, I have caught glimpses, insights, into the true nature of this Pale Rider who torments me.  He is neither a comforter nor a gentle soul; he is a beast and a torturer who seeks solely to destroy my body and soul. In truth, behind the tender façade and beneath the splendid mask, he is a leering, sneering, mocking creature, a murderer and a thief who has stolen the lives of many before me – friends, loved ones, mere acquaintances – some who joined him willingly and some without choice.  Indeed, from my own shadowland, I have witnessed his spiteful taunts, am repulsed by his delight, his sense of triumph, his sheer revelry in the plight of those taken far too soon for my taste.  He relishes the misery and fear of those deaths – celebrates the alarm his cruel twist of fate, the seeming randomness and unfairness of it all, creates in the tattered beings he leaves in the wake of his destruction.

In an instant, if I listen with care, his beautiful whispers are revealed as cruel shrieks, punishing reminders that there is ultimately no escape, and that, in the end, the victory is always his.  He implores me to succumb.  Why delay?  My resistance merely spells prolonged suffering, agony beyond compare.  Perhaps my surrender would grant me serenity, tranquility, a measure of dignity I might not otherwise be spared, he coyly suggests.  But I recognize his lies, as there is no path to his realm which is not fraught with misery – if not for myself, then for the precious souls who pray for my continued presence here – be that only one more day.

No, though my tempter, my tormenter, speaks of the inescapable conclusion I must conclude, I know his true essence and will not be fooled or swayed by his lies.  My existence is marked by struggle and marred by grief.  My days are tarnished and impure, even the most blissful moments touched by sorrow as well.  It is true that I have been forever altered by this demon who overshadows my life, and I can never again be the carefree, untroubled soul I once was, but I will not succumb to his deception nor surrender to his false offering.  Victory and peace lie not in Death’s hands.  For I know where there is shadow there is light, though sometimes dim, and I have also glimpsed my true Redeemer, who has numbered my hairs, counted my days, preordained my path, and appointed my time – who has won the battle before it ever began.  And, so, I endure and hope beyond hope for brighter days.

A THANKSGIVING NOTE

I do not often publicly share the aspects of my background which truly haunt me because, although the person I am today has been shaped and influenced by those past experiences (in some beneficial and some not-so-beneficial ways), I largely believe I am who I choose to be now, regardless of history and circumstance. For many reasons, which I cannot always bring myself to discuss, the holiday season is and always has been my least favorite time of year. Nevertheless, I am thankful for all I have been given.

My life has changed in unimaginable ways over the past few years, and I sometimes barely recognize the creature who stares back at me in the mirror -- one so physically worn and beaten, yet emotionally and spiritually worlds ahead of where she began. You cannot possibly know the person I used to be or the torturous personal journey and difficult paths I have traveled to arrive at this place of relative peace and joy, as I cannot truly know yours. By the Grace of God only do I survive each day.

I am a strong-willed, independent, driven, opinionated, oftentimes stubborn soul, who rarely seeks comfort or direction, and, as such, I frequently fail to adequately express my gratitude to all of you who have taken the time and put forth the effort to genuinely understand and care for me despite my sadly-lacking virtues. I am overwhelmingly thankful for my friends and family who support and love me through even my worst and most unyielding times; for those in this community and in my groups who generously and freely offer kindness, gentleness, and unconditional understanding; for those who endure my rants and listen to my musings, and who read and share my words when the mood strikes; for those who feel my pain right along with me and see past the hurt and anger spoken in my lowest moments; and for all those who listen, hear, accept, welcome, and truly appreciate my differences, flaws, and shortcomings.

I never forget you, not even for a moment. You are my entire life, everything I value, and I love you with all my heart. Despite everything you may be facing, I wish you peace, offer you my deepest and most heartfelt appreciation, and hope you have the best Thanksgiving possible!  

WHEN THE MUSIC STOPPED

*Note: I hesitated to share this poem because it is a bit dark. It was written at a time when I was not feeling especially hopeful. I still have those days now and again. I think we all must experience them at times. But, in the end, I decided it does no one any good to plaster on a smile, pretend the dark thoughts never come, and act as if only rainbows and sunshine grace our paths.

I do not believe in denying the negatives or suppressing my feelings; rather, I seek to expose and work through them. I think it would be misleading and harmful to present a facade and to act as if there are no hardships associated with chronic illnesses such as Gastroparesis. The "tyranny of positivity" is real to me, and I think it less than helpful. I prefer to deal honestly and openly with issues (even dark thoughts) and help people address them. I am not a walking ray of sun, but I am determined, self-confident, and capable, and I am quite certain I can and will survive and thrive regardless of circumstances and that others can, too. That is the basis of true empowerment -- not to have ignored your fears but to have faced them and to have managed to move forward.

I am in a different frame of mind these days, a state of peace, acceptance, and hope -- but it has been and still is a struggle to remain there. Though I once believed the music had died, I see now that was false thinking. I promise you, the music still plays. But you must be willing to uncover your ears and bend to hear it. Albeit distant and, at times, unfamiliar, it plays.*

WHEN THE MUSIC STOPPED

Roam these halls that music filled,

Empty now and hollow,

Chambers once so bright and gay,

Abound today with sorrow.

Long ago, sweet music played,

Wonderous familiar tunes,

Twirled and spun, my spirit free,

Laughter lit the room.

Danced and whirled the night away,

Light and unencumbered,

The beating of my heart kept pace,

Unaware those days were numbered.

Gloom and blackness nowhere near,

Thought the anthem would ever play,

The song untouched by grief and pain,

But, then, life got in the way.

All at once, the music changed,

Jarring – out of key,

The verses strange and unsettling,

The words unknown to me.

The notes began to rise and fall,

Disharmony louder and growing,

The crescendo reached its bitter peak,

With the discord overflowing.

A harsh cacophony of tribulations,

Pounded down my hallways,

Regret, remorse, trials, misfortune,

Marked the end of melodious days.

My mind confused, conflicted,

Piercing noise too much to bear,

The volume raucous, deafening,

Closed my eyes and covered my ears.

And then – the music stopped,

The clamor rang no more,

The din both brash and daunting,

Ceased its thunderous, roaring war.

No sound at all did reach me,

No whirling, twirling fests,

No beating joyful heart,

My dance steps out of step.

The song now dead and buried,

Dark and empty the rooms,

The ballroom full of sunshine,

Frozen – a lifeless tomb.

I long to hear the melodies,

Yearn for my soul to sing,

Even sad forgotten ballads,

What comfort they would bring.

At times, I catch a note or two,

A faint and far-off sound,

A haunting, calling, faded tune,

Wanting to be found.

Perhaps someday I’ll hear it clear,

And the concert will begin again,

The light and laughter and dancing,

Write the chorus and pen the refrain.

But this day it is merely fancy,

Lyrics hoped but yet unplayed,

A sorrowful, fleeting aria,

A verse adrift in better days.

NEVERMORE

NEVERMORE

The bitter cold night shows no pity,

Harsh winds surround me, howling,

Clutch my scarf oh-so-tightly to my neck,

Quicken my pace; my heart is pounding.

Up the steep steps and to the bleak entry,

I rattle the rusty keys in the lock,

Thankful for the mundane, the familiar,

The rhythmic ticking of the mantle clock.

Slowly, I ease into my old armchair,

And breathe a heavy sigh of relief,

My mind drifts into empty peace,

But, alas, my respite is brief.

For soon I feel the rising tension,

The nagging sense of dreadful doom,

The far-away growling presence,

Nearing from the tomb.

At first, his footsteps are faint,

But approaching ever more,

By his vision I have been haunted –

Gentle rapping at my door.

Panic grips my scattered mind,

Blood raging through my veins,

His knock at first seems gentle,

But his intentions have been preordained.

For he is what once was,

The specter of regret,

No mercy or kindness holds he,

And he has come to collect his debt.

His pounding never ceases,

And soon he breaks through the door,

Presents his macabre demands,

I must relive what has gone before.

Harsh words and love unspoken,

Pass before my tightly-closed eyes,

Missed chances and unfulfilled commitments,

The failed following of words so wise.

My tears now fall hot and heavy,

For a past that I cannot change,

I have done my best to make amends,

But good intentions are often in vain.

He laughs and dances and taunts me,

Till at last he has had his fill,

And then at once he leaves me,

Though his memory lingers still.

Perhaps my grievous trial has ended,

Perchance there will tonight be no more,

But as the possibilities consume me –

Another tapping at my door.

He, too, is not unexpected,

Though I had hoped to escape his wrath,

I had dreamed of a moment of peace,

But this is clearly not my destined path.

The door swings open widely, wildly,

And in bursts the ominous fiend,

Looming, towering, just above me,

The ghost of things which will never be.

I’m atop the social ladder,

Bright career and financial success,

Leisurely, lavish destinations,

In all my endeavors touched and blessed.

He flashes this future before me,

But it’s a future long buried and dead,

One no longer in my clever clenches,

Whose only existence is in my piteous head.

For my life is not what it once was,

My journey forevermore altered,

Shaped, forged, and molded by hardships,

Long to reach it, but I forever falter.

My hopes and dreams once so likely,

Have faded and dimmed through the years,

Now but mere distant, fleeting memories,

On a road marked with heartache and fears.

He boasts of my numerous failures,

Laughs with glee at my frivolous dreams,

For he knows as well as I do,

They are finished – or so it would seem.

I hang my head in sorrow,

Weep buckets of misery and shame,

Beg for an ounce of mercy,

And he relents, though my pain long remains.

Spent and feeling utterly broken,

I retire to my warm, soft, easy bed,

Seek to comfort my barren soul,

Long to soothe my poor aching head.

But just as I meet the covers,

As I sigh deeply into welcome rest,

I note the presence of one last visitor,

I feel his breath upon my neck.

Though His arrival is most unexpected,

And I am cautious of his genuine intent,

He seems to mean me no real harm,

No threat of malice or cruel torment.

He is soft and whispers quite gently,

Beckons me to glance once again,

At all the days which lie before me,

The possibilities which dwell within.

I am leery – shattered and broken,

But His words and manner draw me near,

The picture He paints is not frightening,

He calms my mind and my thoughts begin to clear.

He beseeches me to His plea to harken,

“It is not the past that you must fear,

Not the future never fulfilled,

Nor the frustrated fancies of younger years.”

As He draws me ever closer, speaks kindly,

And I listen as I never have before,

“You must find the blessings unseen…

And cling to what once was nevermore.”

His displays are not days I envisioned,

Not the journey I ever had in mind,

Not the accomplishments I once imagined,

But His vision is magnificent, sublime.

A life without envy or fierceness,

Where compassion and tenderness abound,

Days spent serving the forgotten ones,

No earthly indulgences or accolades to be found.

And for the first time in a very long time,

I am filled with wonderous expectation,

My soul holds new promise and hope,

At the thought of this glorious revelation.

He proposes a future uncertain but sure,

This Spirit of What May Yet Come,

A life unforeseen but always preordained,

By the One to whom I long to succumb.

So, my tears flow freely – unburdened,

My heart swells with gratitude and joy,

My living, breathing Redeemer,

Offers promise and restores my dead soul.

I awaken, the long day before me,

The winds blow, but not as bitter or cold,

I clutch my scarf and quicken my pace,

Eager, as my new future unfolds.

Saving Grace

I am reminded of a time when I was younger, when my heart was gentler and purer. Many years ago, my mother worked in a long-term care center, and because I was too young to stay alone during summer breaks from school, I tagged along with her to work, serving as a "volunteer." I will never forget those days or the residents who impacted my life and shaped my sense of compassion.

One man, in particular, touched me. He could hear but could not speak and, despite having been in the center for many years, had never received a visitor. I asked my mother if he had any family, and she replied he had two daughters who never came to see him because (according to them) he had been cold and cruel during his parenting days.

Now, I am not privy to what might have occurred during those years, but I do know the man I met and came to adore was far from monstrous. He was kind and generous, laughed and enjoyed life, despite his circumstances, and lit up exuberantly when we entered his room. He never failed to greet me with a cherished handmade craft, a thoughtful card, or a sweet treat he had saved from his latest meal or trip to the vending machine. I could not help but think that if his daughters would merely open their eyes to the man he had become, life would be better for all of them.

It is because of these past remembrances that stories such as those recounted in the article "Chasing Deadlines and Happiness, We Forget Our Lonely Elderly" (link below) never fail to bring me to tears. I have worked and volunteered in a number of long-term care facilities over the years, and the loneliness and sorrow of the nearly-invisible residents can be overwhelming to witness. There are scores of elderly and ill, silently wandering the halls like ghosts, hidden in the shadows of joyless, austere rooms, who have not a single soul to care for or about them.

We are busy and preoccupied with our own lives, for certain, but there lies a deeper explanation behind this horror than that which first meets the eye. Though pressures and demands on our time and sympathies do indeed abound, the secret truth lying just beneath the logical facade we create is that we have largely become cold and callous to the suffering of others. We are self-centered beings who have developed the ability to simply disconnect, to pretend the struggle of others is not our concern. At times, we ignore even our own loved ones. We tell ourselves soothingly that we live too far from our parents or siblings to help and that we have our own families to care for now, our own priorities to meet. Besides, there are other relatives who are better equipped emotionally, physically, and financially to bear the burden. And, after all, we assure ourselves, we were never really that close to the pitiful soul now desperately seeking help in the first place.

So, we become strangers who move on with our lives without so much as a second glance at the plight of the lessers. We repress the memories and banish the haunting images of our abandoned loved ones (and the twinges of guilt they bring) to the backs of our minds. We convince ourselves our fellow human beings are no longer our problem -- there are care facilities and organizations, volunteers, and distant relatives and friends who are more qualified to tend to that sort of suffering for us. Our lives are dedicated to our own goals and desires, which far outweigh the needs of the forgotten ones, and we cannot be bothered with the great demands of selflessness.

I am not familiar with the individual stories and past lives of all who find themselves alone, but I do know they once had families, neighbors, and friends who loved them. They had dreams and hopes for a fate far better than roaming sterile hospital halls alone, and they long to again engage with the loved ones who have abandoned them to this prison, this living Hell, to be once again appreciated, adored, and fondly remembered. They yearn to find meaning and purpose in their hopeless existence and connect with others who can spare them from the silence and isolation which marks their seemingly endless days.

I do not claim to have simple solutions, but I ask you to please remember these poor souls. Visit, call, write. Shower them with affection, and let them know someone cares, that they were thought of, that they matter. Though the truth may be buried deep down, somewhere in your heart and soul, you must feel the tugging to aid the forgotten ones. Every kind act shapes your path and theirs, so give freely of yourselves. You might find you are their saving grace -- and your own.

* Article Link: https://medium.com/the-guardian/chasing-deadlines-and-happiness-we-forget-our-lonely-elderly-e4268b8d7e1b

FORTITUDE

“Strength does not come from physical capacity.  It comes from an indomitable will.” – Mahatma Gandhi

My heart is full of sorrow and concern this morning. I have watched a particular member of our Gastroparesis support group struggle with her illness and her many personal hardships for months now. I have witnessed her slow descent into the abyss of despair and desperation. As her problems mounted, her anguish and discouragement continued to grow until she could no longer see the light, shut out the pleas of her loved ones and friends that she muster the strength to go on. It is clear to me she has given up.

We all cared deeply about her welfare. We suggested a myriad of treatments and urged counseling. We whispered kind words and offered gentleness and deep affection. But our recommendations were all refused and no amount of encouragement from us lifted her spirits. She left the group, broken and devoid of hope.

It is distressing to realize that despite our best efforts, this beautiful, despondent soul chose to reject our feeble, yet heartfelt attempts at consolation and assistance. It feels very much like failure, and, yet, there was little more we could do. Free will limits our influence and we cannot force others to reach out and take hold of the lifeline being tossed to them.

I do not know how to give others the seemingly innate drive and will to thrive I feel deep in my heart and soul. I cannot seem to transfer it no matter how hard I wish I could. I can offer coping techniques, post uplifting memes, urge others to find and focus on the positives remaining in this life (however small), and talk until I am blue in the face of the benefits of self-advocacy, self-determination, self-care, and self-empowerment... but I cannot make a single soul change her thoughts or behaviors.  I cannot open her heart and mind to new approaches; nor can I instill in her the desire to go forward under less than ideal conditions.  I cannot give her the will to live.

It requires fortitude, determination, and sheer resolve to continue on in the face of overwhelmingly bleak odds and in the midst of the harshest circumstances.   It takes courage, faith, and a sometimes foolish and defiant hope that some way, somehow, you will find a way to make it through this day and the next – until a better day arrives.  Living, flourishing, necessitates a mindset which screams, “You will not break me no matter how hard you try.”  It entails the strength to endure pain and anguish, to persist and persevere, to will yourself to take one more breath though everything in your being cries out that you cannot go on.

Pause, take a breath, and discover the possibilities which surround you.  Find your purpose and meaning, and welcome every day you are granted.  Cherish the good and cling tightly to the beautiful moments.  Delight in each second… there are too few.  

BEHIND THE MASK

You think yourself so wise,

A master of manipulation,

Proud of your maneuvering,

Skilled in the art of deception.

Clothed in a charming costume,

Outside all beauty and light,

But scratch beneath the surface,

Inside, you are dark as night.

Believe you can control me,

Convinced I cannot see,

The “you” behind the mask,

The monster you’ve come to be.

But you are the one who’s deluded,

To think I do not know,

To kid yourself I am blinded,

To your fraudulent, insincere show.

For I am not easily swindled,

And my actions are still my own,

You may think I am bent to your will,

But my motives are mine alone.

You hide your true intentions,

But mine are plain to see,

No cover, no guise, no veneer,

I am simply me.

You must find yourself so horrid,

So unlovable, so unclean,

You’re afraid to unmask the real you,

The person yet unseen.

So, I do not despise you,

No, I feel but pity and sorrow,

That you must hide the horror,

That another’s face you must borrow.

I offer no condemnation,

No vengeance nor hate in my soul,

No, only a genuine intention,

A wish for you to be whole.

But the masquerade must end,

And the pretense must be dropped,

The window-dressing removed,

And the posturing must stop.

For only stripped and bared,

Broken open to the core,

Can a soul reveal its true self,

And hope to become far more.

SURROUNDED BY DEATH

Over the last three years, since my diagnosis with Gastroparesis, I have gradually become more comfortable with publicly sharing information about GP as well as stories regarding both my personal struggles and the types of hardships I see every day in our support groups. I am not certain how my non-GP friends feel about this. I am guessing they sometimes find it boring or even annoying. In any case, it is not something for which I will apologize, nor is it something I will cease. You see, the message is too important for that. We need awareness – and not just within the GP community. We need the non-GP world to know our plight. But as important as it is to extend our message to the world around us, the one thing I have refused to do from the beginning (and will continue to reject) is to publicly name those in the GP community who have passed away. I am sure you have noticed the (far too) many green candles that have appeared on my page over the last couple of years and have perhaps even wondered about some of the details of the lives these candles represent. We have chosen, as a community, to largely keep this information confined to our private groups out of respect for the people who have passed and their loved ones. What I can tell you, though, in general, is that Gastroparesis itself is not considered a terminal illness. Good news, right? Only it is not quite as rosy as it first appears. While GP itself may not directly cause death, the conditions resulting from it and the effects of our illness on our bodies over time most certainly can and do lead to death. Many times, there is an underlying cause of Gastroparesis (such as Diabetes or an autoimmune disorder) that contributes to this. It is also somewhat common for people with GP to have a “cluster” of other conditions such as IBS, Mitochondrial Disease, Lupus, Lyme, etc. that can contribute to decline in condition. Further, those with tubes, ports, and PICC lines must constantly be alert for infections (such as sepsis) and other complications that can lead to crisis. But there is also another contributing factor – one that is sometimes not pleasant to discuss but must be confronted nevertheless – and that is death due to outright malnourishment and starvation. Malnutrition and the gradual decline and starvation resulting from it is what we all fear, and yet many in the outside world (and some within the GP community) wish to pretend that the threat is not real. Well, let me tell you, it is, sadly, quite real. On a very good day, I am able to consume about 750 calories or so, but many days, I do not achieve 500. Five-hundred calories per day. Did that register? Can you imagine the toll that this must be taking on my organs, my appearance, my cognitive abilities, my very being? I read stories every day from group members who are losing their hair, their teeth, their energy, their organ function, and their ability to function mentally. It is overwhelmingly difficult to function with so few calories and such poor nutrition. We try to prepare ourselves (as if that is possible) for the loss of those around us the best we can. But how do we as a community and as individuals process all of this? We rise every day knowing that we may hear of yet another death in our community. Will it be someone we know? A close friend? How long before it is us? Death surrounds us, and the unspoken fear that this will be our all-too-soon fate as well is ever-present in our lives. We push it to the backburner so that we can get through the day, but when someone we know, someone we love, someone we spoke with just yesterday passes, it becomes a little more difficult to confine the idea to the corners of our minds. And we wonder – am I next? So, when you see my articles, blogs, stories, awareness and advocacy efforts, petitions, and the like – and when you see the green candles that I have come to detest – please try to understand that this is an attempt to garner attention and to win the support and assistance of those in the outside world who might intervene and perhaps alter our fates. It is, indeed, an endeavor to honor those community members who have earned my respect, admiration, and love by virtue of their existence and by virtue of their struggle to survive. It is an effort to keep their deaths from being in vain. And though I may not be able to share the names, rest assured that these are people, real people, with families, friends, hopes, dreams, goals, and wishes. These are people who have fought hard to survive, who have never given up, but who, through no fault of their own, have been forced to pass from this world far too soon. These are not stories or statistics to me; they are my friends. They are people who mattered, who touched my life and the lives of so many others. They are people who needed help and deserved far better than this fate.

GASTROPARESIS AWARENESS MONTH - AUGUST 2017

August is national Gastroparesis Awareness Month!  We encourage medical professionals, patient groups, and family and friends to help educate others about this life-altering chronic illness and its potentially devastating effects on patients and their loved ones.

Gastroparesis, or “paralysis of the stomach,” is a digestive motility disorder in which the stomach muscles fail to contract and move food from the stomach into the intestines at the proper rate.  Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines. This process is slowed in those afflicted with Gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.

This slowing of the stomach emptying process can cause debilitating and sometimes life-threatening symptoms, including stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, esophageal damage, blood sugar fluctuations, bezoars, and overwhelming fatigue.  

The National Institutes of Health (NIH) estimates that more than 5 million people live with Gastroparesis.  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 that there is no known cause. 

Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material (food) is traced by a scanner as it moves through one’s digestive tract.  Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and (less commonly) the smart pill (which, when swallowed, transmits data regarding the rate of passage through the digestive tract).

As of now, there is no safe, reliable, and effective treatment for Gastroparesis – and there is no cure.   Available treatment options include often ineffective surgeries such as Gastric Electrical Stimulation (pacemakers) and pyloroplasty; medications which carry the risk of serious side effects such as Reglan (which comes with a “Black Box” warning from the FDA) and Domperidone (which has not been FDA approved); feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief. 

Living with Gastroparesis is challenging, both physically and mentally.  It is truly a life-altering diagnosis.  We seek awareness, better treatments, and, ultimately, a cure.

For additional information, 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.