Tuesday, November 21, 2017

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!  

Friday, November 3, 2017

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.






Tuesday, October 24, 2017

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.

Sunday, October 22, 2017

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

Saturday, September 23, 2017

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.  



Tuesday, September 12, 2017

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.

Friday, August 25, 2017

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.

Wednesday, August 2, 2017

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.




Monday, June 12, 2017

WHAT PATIENTS WANT PHARMA TO KNOW


There was a time when “Big Pharma” was thought by many to be cold and impersonal, oblivious to patient need, and consumed by greed.  Though this belief lingers in some, the times are indeed changing.  In recent years, as patient demands to be more engaged in their own care have increased, major pharmaceutical companies have made genuine attempts to become more patient-centric and view patients as collaborators rather than merely consumers.  And they are making huge inroads.  Increasingly, “Big Pharma” is reaching out to patients in an honest attempt to meet their needs and include them in the design and decision-making processes.  In light of these recent efforts to engage patients, I thought it prudent to share a few insights into what patients want pharma to know.

To begin with, we would like you to understand we are not simply statistics.  We are not numbers on a page, “cases,” or sterile, unaffected participants in the process.  We are, above all else, human beings with hopes, dreams, and goals.  We have families, loved ones, and friends who count on us and with whom we wish to remain.  We long for acceptance and understanding, and we have a passion and desire to live full, healthy, normal lives.  But our debilitating illnesses deeply impact us and fill us with fear as to how our futures might be limited or cut short.  Indeed, they alter every aspect of our lives.  We need your help in regaining what our illnesses have so cruelly stolen from us.

We long for cures above all else, of course, but shy of that, we seek treatments which improve the quality of our lives – quality of life as we define it for ourselves and not as characterized and imposed upon us by detached observers.  We urge you to hear us and address the characteristics of our illnesses which matter most to us.  We need you to recognize the symptoms most significant in our lives and work toward alleviating those symptoms with treatments convenient to our lifestyles and befitting of our needs.  Further, we seek for us and our caregivers to be included in the drug development process from the very beginning so you might incorporate our wishes and our requirements wholly into your design.  Likewise, we desire the opportunity to provide feedback all along the way and to be empowered to drive modifications in the process when appropriate.  We also beseech you to acknowledge our treatment expectations and honestly address how realistic you believe these to be. We do not need false hope.

We wish you to know we are educated, knowledgeable, engaged in our own care, and willing to connect and share our experiences.  You need only reach out to us.  It is sometimes difficult for us to reveal personal information and discuss the most intimate details of our lives, but we are willing to do so with the promise of respect, some level of privacy, and the hope of better treatments.   We are likewise willing to participate in clinical trials but frequently have difficulty finding them and comprehending the sometimes lengthy and complex requirements for participation.  We have false assumptions about the nature of trials on occasion, fail to understand what costs and burdens we will bear, worry about travel demands and insurance issues, and fear what may happen to us if we abandon our current treatment, receive a placebo, or suffer harm from the test medication.   You can help alleviate our concerns by simplifying requirements, reducing our burdens, tailoring trials to our immediate needs (to the extent possible), assuring us of quality medical care throughout the process, emphasizing with our fears, and demonstrating compassion.  We need assistance in finding available trials and would be most grateful if you would provide us with full, upfront information about what trials entail as well as a summary of the results of said trials.  We wish to know our participation mattered and we wonder about the effectiveness of the drugs we so kindly tested.

Most of all, we seek constructive, quality engagement between patients and the pharmaceutical industry.  We value your willingness to include us in your endeavors and incorporate our input into your drug development processes.  We hope you know how meaningful your efforts in this area are. 

I conclude with my personal story so that you might know the agony which many of us endure and hold our stories in your hearts.  You have the power to touch and transform lives, and you are our best hope of regaining that which has been so cruelly wrenched from us.  We matter.  You matter.

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

LIFE FOREVER ALTERED

In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis.  I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.  Gastroparesis means “paralysis of the stomach” and is marked by debilitating symptoms such as nausea, vomiting, stomach and abdominal pain, reflux, early satiety, and severe bloating.

Since diagnosis, my life has been altered in ways I could not have imagined – overnight.  One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids.  I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness.  For the next few weeks, I was on a liquids-only diet and told that I would gradually work up to soft foods and solids.  Unfortunately, nothing like that has occurred.  I am now able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts. 

At first, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life.  But as time passed, I began to see how foolish that was.  Every single day, every second of every day, I think about food.  I see it, smell it, cook it, and feed it to my family; but I cannot have it.  I look in the mirror and see a skeleton.  I try to eat even small amounts of food, and I am in agony.  I am weak and fatigued to levels I did not think were possible.  Some mornings, I do not think I have enough energy to get out of bed.  I can barely concentrate and function enough to do everyday tasks.  And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs.  My 13-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.  At times, it has frightened her so much that she has asked me to get “Life-Alert.”

I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions.  I worry that I will not get to see all the significant milestones to come.  I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long lifespans, and it bothers me.  I worry about what will happen to my family when I am gone.  I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her turn "Sweet Sixteen."  I want to hear about her first kiss.   I want to see her grow up, graduate, get married, and have children.  I want to know that she has a good career and a loving family.  I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs.  I want to grow old with him.  Facing the strong possibility that none of these things will occur is anguishing. 

I get frustrated because people do not understand how my life is affected by GP.  If you saw me on the street, you would likely not realize I am sick.  I do not look sick.  People frequently ask me if I am better now, and I cannot seem to convince them that I am never going to be “better,” not in the sense they mean.  I am constantly told I “just need to eat,” or that if I would try yogurt, natural herbs, or “get some more rest,” I would heal.  My own doctor labeled me as anorexic and advised my husband to “watch me.”  The lack of understanding is incredible, and though I know people mean well, it still bothers me.

I am angry because I am a control freak, and I do not like being a slave to this disease.  I do not like being “helped” with everyday tasks and always having to rely on others for aid.  I have screamed at, slapped, and pushed my husband away for simply trying to assist me.  I have thrown things (including food) across the room in fits of anger.  I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control.  Mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and I am still sick. 

There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die.  He does not – and I am thankful for that.  I think about others who have this disease who are much worse than I am.  I know many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes, surgeries, or other extreme measures for nutrition and relief from debilitating symptoms.  I sometimes look at them and think that this will surely be my future, too, and it scares me. 

I do not understand why I have this disease, and perhaps I never will, but what I do understand is that it is somehow important for me to share my experiences and let others know that despite my challenges, I mostly have a good attitude about my circumstances.  In fact, I believe I have been blessed because of my illness.  Since my initial diagnosis, I have become heavily involved with online gastroparesis support groups and have created and now administer an advocacy group that seeks to foster awareness and change for my community.  I feel connected and bonded to others in ways I would have never dreamed possible a few years ago. 

I have discovered a whole new purpose and meaning to my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over these past few years.  I tell you, honestly, every person I know has helped me in some way.  They have visited, called, helped with chores and tasks, and simply cheered me up with their stories.  Please do not ever be convinced you can do nothing to help or that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present make all the difference in the world.  

Saturday, June 3, 2017

LEFT BEHIND

*Note: The following post is not meant as an indictment of men. Pronouns are chosen for convenience only and reflect the majority of cases I see in the groups.*


One of the issues I see quite frequently in our Gastroparesis support groups yet which remains a rather taboo subject outside our groups is spousal (substitute: partner, family, significant other if you wish) abandonment.  I realize many factors weigh into a divorce/separation and that it is perhaps not as easy as saying, “Stay with your spouse through thick and thin,” but the effects of such desertion on the chronically ill are devastating and desperately need to be addressed.

Many of those forsaken were married for years before being cast off.  They built a life centered on family and counted on their spouses for emotional support, physical comfort, and companionship.  They never held jobs, held low-paying jobs, or had to leave their jobs once illness hit.  Some delayed educational pursuits to care for their families and never got around to finishing their degrees.  Many agreed to stay home and raise children or work part-time on the promise that the spouse would continue to work and provide a family income.  Some turned down high-paying occupations and sacrificed their own ambitions to further their spouses’ career goals.  They were in what they thought to be committed relationships with common goals.  They established mutually agreed upon objectives meant to benefit the family as a whole.  Such commitments were, admittedly, made in the absence of illness, hardship, and crisis.  There was no plan for what-ifs.

Then, when illness struck, all their grand designs began to crumble.  Perhaps things continued on as before for a while – even a good long while – before one spouse decided he no longer wished to live his life “tied” to a sick partner.  After all, this was not what he “signed up for” and was no longer “fulfilling.”  There are all sorts of justifications for abandoning one's spouse: “She is not the same person I married.  She is always sick.  She can’t go anywhere and can’t take care of the kids or help with the chores like she used to.  I do everything.  We can’t even get romantic anymore.  Who wants to live like this?  Why should I be held to this marriage when she can’t hold up her end of the bargain?  Don’t I deserve happiness?  Don’t I deserve a decent life?” And so, one day, despite years of togetherness, tenderness, and shared dreams, the spouse walked out the door.

You may think me judgmental – may even side with the spouse who left – but I see the end result of this type of thinking, of this rejection and callousness, of this “me-first” attitude.  In our groups, we struggle to pick up and reassemble the pieces of those left behind.  The abandoned spouse is devastated emotionally and spiritually and questions whether she was ever really loved in the first place.  She wonders how someone she once thought devoted could so easily reject her, their family, all their beautiful dreams.  She cannot properly care for herself and her children, physically or financially, without spousal assistance.  And though perhaps once capable of pursuing a career (or an education), she cannot now find gainful employment due to her debilitating illness.  Worse still, she loses her insurance coverage once her husband leaves and cannot afford her necessary (and yet costly) medical care.

Yes, there are options… none ideal.  There are public assistance programs for housing but these often come with long waiting lists and the dwellings are sometimes located in less-than-desirable areas.  Disability might be a possibility, but it is frequently difficult to qualify and takes years to obtain approval.  There are also programs (such as SNAP and food pantries) designed to help with food costs, but many times, these do not cover all expenses incurred or items needed for care.   Medicaid may be an option for healthcare, but the approval process can take time and, even once in place, procedures and treatments can be delayed due to processing time.  It is often difficult to locate providers who accept this form of reimbursement as well. 

And, so, a downward spiral begins.  Mentally, emotionally, and physically drained from illness and abandonment, the affected spouse slowly loses all for which she worked so hard.  She is truly alone.  She has no emotional or physical support.  Her home is gone.  Her family is split.  Her medical care is non-existent or subpar.  Her condition begins to deteriorate due to the stress resulting from lack of assistance and care, and she finds herself in a dark abyss with little hope of climbing out unassisted.  This once optimistic, vibrant, dream-filled soul sees no bright future and abandons hope.

Now, I do not pretend to have the answers to this very real dilemma.  We live in a free society where marriage is an at-will contract and taxpayers reject ideas of further assistance to the “lesser” among us.  We have rights, and rightly so.  But as decent, caring human beings, I beg of you to consider the consequences of your choices, and I ask you: What happened to commitment, to devotion, to promises?  Where is your sense of responsibility for your fellow man?  Where is your compassion?  How can you so easily ignore the plight of those around you, perhaps people you once cared for deeply – loved, who have struggled to keep their heads above water and are now drowning in misery and hardship?  These people are in need and cannot succeed without you.  What do you owe these souls?  Much.  Much.  We are all connected, all intricate and valuable parts of this society, this world, and a similar fate could befall any one of you at any time.  Open your eyes.  Unbolt your hearts.  Extend your hands.  

Sunday, May 21, 2017

HUNGER

























A hunger lies within me,
A fathomless aching need,
Unaware from where it stems,
But I know I must feed the beast.

He is physical in nature,
Of that I am quite sure,
He requires bodily sustenance,
But claims – demands – far more.

He ravages my frail, broken body,
Punishes mind, heart, and soul,
He is a never-ending thirst,
A longing to be filled, made whole.

He’s both powerful and frightening,
Roars and thunders and storms,
But his motives are true and tender,
And, so, I find I am torn.

Do I detest this monster within me,
Or welcome his presence, not dread?
Can the poison which destroys my body,
Become my antidote instead?

He yearns for mercy and benevolence,
For those who share this plight,
And rages against injustice,
Battles it with all his might.

He cries out for aid and awareness,
Thirsts for understanding and grace,
Wars against apathy and indifference,
It is empathy and warmth he craves.

He is a brutal beast of burden,
Who carries the pain of the lost,
His passion and fire breathe knowledge,
But at such great personal cost.

For the beast, he wounds, in this struggle,
The pangs grip, torture, and twist,
As he aches for those who surround him,
Who seek more than to merely exist.

He craves to find an answer,
Deep longing for release and relief,
He is starving for treatments, a cure,
In a miracle, he still believes.

The creature, he mortally injures,
He damages to the inner core,
His unsatisfied longings ever-looming,
My heart cannot – but must – bear much more.

He has ranted, pleaded, and threatened,
Begged for someone to hear,
But his words and sincerest entreaties,
Too often have fallen on deaf ears.

He engulfs, overwhelms – swallows all,
But his intent is gentle and pure,
One must feel his cruel, monstrous sufferings,
To know, to show, to endure.

In the end, when he falls in hard battle,
When his struggle for good has finally ceased,
There can be but only one conclusion:
'Twas beauty which killed the beast.