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. 

Thursday, May 18, 2017

IS THERE ANYBODY OUT THERE?


















Some days my heart just aches over the incredible loneliness and isolation, the sense of abandonment, in our Gastroparesis community.  This is not the first time I have written about this subject, and perhaps the message seems old and tired to those outside of our GP world; nevertheless, I cannot help but address it.  It cries out to be heard as I scan the posts in the groups and in my feed.  The physical effects of this illness are devastating, but the emotional aspects are every bit as difficult to bear, if not more so.

Some truly have no family – perhaps they never married, bore no children, and their parents have long since passed; others technically have family members but no longer enjoy contact due to physical or emotional distance. Perhaps they have a family, but not one that sees, not one which seems to care. Once close friends have deserted these poor souls as well, unable to cope with the changes brought about by illness.  Our illness impacts every part of our lives.  It causes physical agony, often leaves us homebound, and generates anxiety and depression; it taxes us mentally and emotionally to the point where we view ourselves as burdens – too much effort required, too many sacrifices demanded from others.  How can we expect them to remain by our sides?

And so, the stories flow:

“I need to see my doctor, but there is no one to take me.  I can’t get to the store, either, and I am almost out of my medications.  I am too sick to drive myself and I don’t have the money to pay for a cab.  What am I going to do?”

“My house is a mess, but I am too tired to clean.  I can barely take a shower without passing out.  How can I possibly mop the floor?  I asked my sister if she could help me just this once, but she said she has her own life and her own problems – she can’t take on my responsibilities, too.  I know she can’t drop everything and come over, but could she, for once, try to see what I go through?  She’s my sister, but she acts like a stranger.  No one has time for me, not even my own family.”

“I used to love my job – and I was good at it, too.  But once I got sick, I had to give it up.  I thought I was close to my coworkers but not one so much as bothers to call me now.  I feel so worthless and lost.  I would give anything to be able to go back to work – be around people again.  I miss that.”

“No one invites me over anymore.  I guess I have had to cancel so many times that they just don’t think about me now.  Besides, I am no fun when I can go.  I mean, I can’t even eat, and I am too tired to stay long.  I don’t blame them.  Who wants to spend time with someone who doesn’t have the energy to join in the party?”

“He asked me out, but I had to turn him down.  I have been in a flare and the pain and nausea are really bad.  It’s not like I can go out to a restaurant and carry a vomit bag!  How am I ever going to find someone if I can’t even get out of the house?  I’m only 18 years old.  I should be out with my friends, not lying on the couch sick.  I am going to be alone forever.  Who would want to be with someone like me?” 

“My dad told me not to talk about my GP anymore.  He said if I would stop being so lazy, it might go away.  He told me he is tired of hearing about a disease I made up for attention.  He doesn’t get it.  Can’t he see how I am suffering?  I am wasting away in front of his eyes, and, yet, he refuses to see.  How can he be so cruel?  If he doesn’t understand, when he sees me every day, how will anyone else?  If he doesn’t care – and he is my father! – there is no hope for me.  No one will ever understand.  No one will ever care.”

“I asked my daughter if she could stop by for a few minutes this weekend, but she told me she is too busy.  I know she has her own family now, a job, friends – but I feel like she doesn’t know I exist.  I raised her.  I held her in my arms as a tiny baby.  I sat up with her so many nights when she was sick or crying over some boy.  I took care of her.  And now she couldn’t care less about what happens to me.  Did she ever love me?  Sometimes, I don’t know.  Am I asking too much to expect a visit every now and then?  I mean, I am her mother.  How can that not mean something?”

“I thought my husband cared, but then he told me he just couldn’t cope with the constant negativity anymore.  We stopped going out because I have been so sick, and I guess he grew tired of listening to me talk about how bad I feel. It hurts.  We were close once.  I thought he cared.  I thought he meant the vows we took.  I thought he would always be there for me, you know?  But he said he didn’t sign up for this.  He found someone else, someone who doesn’t have so many issues.  Is this all I have to look forward to?  Is this how things will be the rest of my life – alone, abandoned?”

“I can’t do this anymore.  I have no one.  No one.  Nobody listens and nobody cares.  What is the point of going on?  This is not living; it is existing.  Why can’t I just die and get it over with, end this suffering?  It’s not like anyone would notice I am gone.”

“I could die alone in this house and no one would ever know.  They don’t call.  They don’t come over.  They don’t even write.  I’m already dead to them.”

“I want to call someone – just talk for a while, hear someone’s voice.  But there is nobody.  I picked up the phone and realized… there is no one to call.  No one at all.”

“I am alone tonight, like every night.  I wish I had someone with me.  They wouldn’t even have to talk – just sit by me, hold my hand.  I get so tired of being by myself.  Sometimes weeks go by and I don’t hear from a single soul.  I want a hug.  I want someone to wipe my tears and tell me it will be okay.”

These stories break my heart.  How can they not?  My people feel abandoned and forgotten – and many are.  They need a cure, certainly, but more than that, they need human contact.  They long to find love but cannot imagine anyone being able to see past the pain, pick up the hardship, and commit to a relationship.  They need friends, lovers, companions.  They need to know someone cares, that their lives matter in the grand scheme of it all.  They need to be listened to and comforted.  They need a warm embrace, a gentle caress, and a soothing word.  They are empty and need to be filled.

Open your eyes and hearts to the need which surrounds you.  We do our best to support these solitary souls, but online groups cannot replace “real life” human interaction.  These people need you.  They need your presence.  They need to feel your touch, hear your tender words, to know someone, somewhere cares.  Remember them.  They seek only a moment of your time.  Is there anybody out there?  Anybody at all?

Saturday, May 13, 2017

ACCEPTANCE


“Acceptance” does not mean giving in to your illness, refusing to fight, or rejecting hope – at least, that is not what it means to me.  It simply means accepting your illness as a reality, acknowledging its existence and its very real effects and limitations upon your life.  It is conceding you cannot always control it and understanding your life has been altered, perhaps forever.  Moreover, it means making necessary adjustments, physically and mentally, so that you can move forward and not remain “stuck” in the past. 

I know this is not a simple process, and I understand there will be periods of mourning for all you have lost and continue to lose.  Those moments of grief might never completely disappear, but they can be minimized, pushed to the back of your mind.  Grieve – grieve until the tears stop flowing – grieve for all you have lost and for all the plans and goals you might (MIGHT) never achieve – but then pick yourself up and make a commitment to move on and find a new life, one filled with joy. 

What good does it do to mourn the past and neglect the present?  You cannot live your life with joy if you are constantly focused on loss.  And as long as you believe there is nothing left to live for, then, indeed, there will be nothing.  You must find the good in the here and now, no matter how small, and build on it.  You can set new goals and dream new dreams.  Make adjustments and control what you can, where you can, and when you can – and let the rest go.  Learn to accept yourself, with all your lovely imperfections, frailties, and limitations, and live fully in the present moment. 

Find the good, the beauty, and the wonder in your present reality.  Look hard, and you will see it.  You can be at peace under any circumstances, but you must be willing to give up false beliefs and allow the memories to become merely fond remembrances.  To do otherwise is to remain mired in a time that is long gone.

*Please also see http://melissarvh.blogspot.com/2016/04/every-now-and-then-when-i-am-all-alone.html.  It is a bit more personal look at the struggle.  I hope it helps someone in some small way.*

Friday, May 12, 2017

CHRONIC ILLNESS: THE JOYS AND FEARS OF MOTHERHOOD




As Mother’s Day fast approaches, I find myself reflecting on not only my mother but on my own role as a parent as well.  I live with a chronic illness, Gastroparesis, which leaves no aspect of my life untouched – and that includes my role as parent to my 13-year-old daughter, Lilly. Like many in my Gastroparesis community (and in the chronic illness community in general), I worry about how my illness affects my child and sometimes fear the limitations it imposes on her daily life disqualify me from being a “good” mother.  So, when I came across a Today.com article, “Three generations of moms answer the question, 'What makes a good mother?'” (http://www.today.com/parents/mother-s-day-three-generations-what-makes-good-mom-t111328), in which one mother declared the credentials for motherhood as, “Being there for your children no matter what means taking no sick days… the ability to do all things at all times, and the ability to never get sick,” I knew I must address this state of affairs.

I did not have a good relationship with my mother, and for a very long time, I hesitated to have my own child out of fear I would not be able to adequately parent her, properly meet her needs, or provide her with the nurturing so important to any child.  I feared I would be unable to love her, that we would never bond, and that I lacked the basic parenting skills to guide her to becoming an independent, confident, compassionate woman.  After much soul-searching, I eventually got past these fears, and for 10 years after the birth of my daughter, I was able to put them in the back of my mind and move on quite nicely with the business of parenting… But then came my diagnosis.

Suddenly, all the old worries reared their ugly heads – only amplified versions, heightened by my new physical limitations this time.  You see, I can no longer participate in most of the activities I once enjoyed with my daughter.  My illness causes severe pain, nausea, malnutrition, fatigue, and a whole host of other unpleasant symptoms which greatly impact my life and the lives of those around me.  I can rarely leave my house, at least not for extended periods of time, and my home life is limited by my lack of energy and burdensome symptoms as well.  I miss most of Lilly’s school events and extracurricular activities and am absent from nearly all family gatherings.  My husband must act as both father and mother at such affairs.  And even when I am with my daughter at home, our time together is tainted by my bouts of pain and fatigue.  Our neighborhood walks, visits to the local zoo, and shopping trips are largely nonexistent now, and my ever-looming illness taints all our interactions.  There is never a time when we are untouched by it. 

I am keenly aware of the disappointment in my daughter’s eyes each time I tell her I cannot attend her latest awards ceremony or hear her perform her choir solo in person.  I see her struggle to find answers to her homework problems, alone, when I am too tired to help.  I watch her through the window as she sits by herself in her backyard swing or shoots baskets solo because I am too ill to join her.  I witness her envy when her classmates and friends receive the latest technical gadgets and toys and when she sits at home while they enjoy lavish vacations we cannot provide because of our mounting medical bills and financial distress.  I watch her fret over my well-being and know the concern she feels when, as she consumes her dinner, I sip a protein drink.  I recognize her fight to hold her tongue and show respect when I am worn down and unjustly scolding her for no reason other than my own bad mood and misdirected anger.  I see the pain I cause my child.  I am not oblivious to these hardships, and I worry about both the short-term and long-term impact on her.  If the “good mother” bar is, indeed, “the ability to never get sick,” then I am failing miserably.

But the good news is that this is NOT the bar.  This is merely a healthy (and somewhat misguided) person’s version of good parenting – one which denies reality and leaves no room for frailty, mistakes, and shortcomings of any sort.  In my moments of sanity and clarity, when I contemplate the standards of good parenting and drive my nagging guilt to the furthest recesses of my mind, I understand that though we all fall far short of our goals and ideals, perfection is not a requirement of good parenting.  But genuine love, the desire to put forth effort, and the willingness to forgive, move forward, and try again are. 

There are difficult, long days when my child is largely ignored – but there are also small moments which define us and remind us we share a bond no illness can break.  We share corny jokes and tell over-the-top stories.  We watch the latest tearjerkers on home video and share our reviews of books we have enjoyed.  We sing with the bird and dance to “oldies” in the kitchen.  We laugh together when Dad “just doesn’t get it” and when she playfully teases him about his “outdated,” unrealistic expectations.  We have lengthy discussions about her newly-developed political and religious views and speculate about her future career and family life.  We sit together silently, lost in our own thoughts, happy to be in the same room.  I embrace her when a classmate mistreats her and brings her to tears, and she caresses my back when I am doubled over in pain.

I see clearly that my role as a mother is to instill in my child a sense of worth, a spirit of independence, an attitude of compassion, concern, and respect for the dignity and value of others, a desire to impact the world and all those around her in a positive way, and an ability to act with discernment in all matters of the heart, mind, and soul.  My daughter feels my love and tenderness.  She believes that despite my failures and shortcomings, I try my best, and it is not apathy or lack of desire which keep me from those events which fill her with pride and celebrate her many accomplishments.  She is aware that she means the world to me and that I would willingly sacrifice everything if it would further her happiness.  She knows I am there for her, offering support and forgiveness of her own flaws and errors in judgment.  She understands that people are imperfect, complex individuals who face all sorts of mental, physical, and spiritual challenges – and who sometimes fail, in spite of their best efforts.

I am ill, and I cannot always provide my child everything well parents can.  I certainly cannot guarantee her only healthy, perfect days.  But my daughter sees in me a mother who constantly endeavors to overcome daunting challenges and who strives to be the best parent and person she can be under the circumstances and within the bounds of her physical limitations.  Moreover, because her own life has been filled with adversities, Lilly has learned to face and combat the cruelties and injustices which abound in this world.  She knows the importance of persisting against formidable odds and of putting forth effort even after one has failed time and time again.  She knows determination and tenacity.  She empathizes with those in financial need, who lack even the most basic material necessities of life, and gives of herself and her possessions to those less fortunate.  She recognizes that every beautiful soul around us faces unique challenges and uncertain futures, often fraught with pain and anguish, and is able to demonstrate compassion because of the hardships and heartache she herself has endured.  She is a confident, compassionate, industrious, determined young lady with standards, morals, and values beyond reproach, who sets and accomplishes goals, and who desires to make the world a better place.  Isn’t that the goal of parenting?

I cannot give my child everything I desire or everything she desires – no one can – and I am okay with that.  My daughter is a better person BECAUSE of the lessons she has learned from coping with my illness and my shortcomings.  It has deepened our connections, our bond, and it highlights what is truly of value in this world: our relationships and our love for one another.  We cherish every precious moment together and find joy in the mundane.

I leave you with a story I wrote about Ms. Lilly awhile back.  I hope you find comfort in my words and in this anecdote:



I Feel Best When I am… Saving Worms?

My eleven-year-old daughter, Lilly, just formed a “Save the Worms Society” at her school.  She is beyond excited about this and fully believes this will be a world-wide organization someday.  In any case, it is big news in our house.  It is moments like these, watching my daughter, full of enthusiasm and hope, which make me feel as if anything is possible.

Please allow me to brag.  Lilly is a happy, healthy, beautiful child.  She excels in everything she does.  She has had the highest grades in her class every semester since she started school.  She has worked her way up through the ranks of her Tae Kwon Do class and is now a brown belt who is frequently called upon to lead the rest of her class.  She is artistic and has even won a few art contests with her drawings.  She is well-mannered, well-behaved, and in many ways, quite mature for her age.  All of this pleases me, but it is not what makes her special.

What sets Lilly apart from the crowd is that she has an unrivaled enthusiasm about her, and she uses her passion to try to make her world a better place.  The worm project is but one example of this.  You see, some children in her class were “picking on” the worms one day on the school playground.  It seems these little worm bullies did not have a good understanding of how worms would like to be treated.  These hoodlums handled the worms roughly, and Lilly feared for their safety.  She gave the children a good scolding and did her best to convince them that worms should be treated with respect and compassion, but she did not think this was enough.  What if other worms in other places had no one to protect and defend them?  So, she gathered together a small band of believers and started the “Save the Worms” society, complete with rules, regulations, standards of worm care, and a pledge to treat worms everywhere with the kindness they so richly deserve.  But she did not stop there.  Once she was home, she called a few friends at other schools to encourage them to start their own worm societies in their own schools.  She is 100% convinced that this will happen, too.

Perhaps I am blinded by my love for my child, but it seems to me that few eleven-year-olds would go to the trouble of creating a movement to secure the safety of these poor, unfortunate, misunderstood worms.  That is what makes her special.  That is what sets her apart.  She sees a need and she does not hesitate to believe that it can be taken care of.  She sees no barriers to her dreams, and her spirit soars with the hope that she can mold the world into what she wants it to be.  I know the world can be a cruel place, and many plans never reach fruition, but I hope she never loses her enthusiasm and determination to make a difference. 

On days I feel like all my efforts are for naught, I think especially hard about my Lilly and the joy she has for life.  I think about her love for all living creatures.  I think about her compassion and her will to do good works without any sense of discouragement.  She motivates me and makes me feel that I can take on the world, too.



Monday, April 24, 2017

WHEN LIFE IS NOT A DREAM

























I am prompted by a post in one of our Gastroparesis support groups to share a story I might not normally share.  I have made a conscious decision to refuse to live in fear because of this cruel disease, but, unfortunately, I have little control over my dreams (and perhaps my subconscious mind).  So, last night, I found myself haunted by a nightmare in which I was left alone to care for myself and my young daughter after the passing of my husband.  I do not normally dwell on such matters, but I must admit, I was impacted by this more than I would like.

In the dream, I was completely unhinged.  I did not how to cope with my daughter’s feelings; nor did I have any idea how I would care for her.  As it stands today, I am rarely able to leave my home and cannot participate in most of her activities.  I am unable even to transport her to and from school.  I have trouble completing the simplest of household chores and could not possibly pursue employment.  I ran through our living arrangements and our financial situation in my mind and could see little hope.  It was frightening.

This morning, in the light of day, fully awake, I can examine this with a clearer mind – but, though I am calmer, the outcome is essentially the same.  I do not know how we would survive should this fate befall us.  It is senseless to worry about “what-ifs” and panic about scenarios which might not soon occur, of course, and I do not permit myself to take this path, but I still must ask myself how I should prepare for this. 

This is a scenario many in our groups do face – perhaps not death, per se, but coping alone, with no family members or friends to assist them.  I read their stories daily, as this is not rare.  This cruel disease robs us of our physical strength and endurance.  We are nutritionally deprived, weak, fatigued, and must bear a whole host of debilitating symptoms such as nausea, vomiting, and pain.  Managing this illness, even with the help of caring others, is problematic at best.  I can only imagine the added difficulties that come with surviving alone.  The physical hardships are many: lack of transportation (or simply the ability to drive) to medical appointments, stores, and social events; inability to adequately keep up with household chores; unemployment, underemployment, and lack of financial stability – generally accompanied by outstanding medical debt; and the inability to adequately care for their own medical needs – timely administration of medications, personal grooming routines, exercise, preparation of food, etc.  It is no doubt nightmarish.

But what seems to me worse still is the mental anguish these souls must endure.  The sheer loneliness and isolation many experience is beyond compare.  Though we do our best to provide for their social needs in our online support groups, we pale as a substitute for genuine human contact – an embrace, a gentle touch, a soothing word at the end of the day.  There is no one physically present to hold their hands and comfort them when they are weary and ill, receive disturbing news, or merely wish to celebrate and share a minor victory.  There is no face-to-face conversation, no one to sit by their side, no gentle smiles directed toward them, and no words of encouragement, love, and adoration. 

My heart breaks for these poor souls; I grieve for them as I do for those deceased.  I beg you to remember the unfortunate ones, the kind beings who would give most anything for a moment of your time.  The smallest of gestures on your part would mean the world to them.  Open your hearts and give of yourselves: call, text, write, transport, visit, donate your time and money.  Do anything – but not nothing.  These people matter and they are counting on you.  

FLEETINGLY SWEET


FLEETINGLY SWEET

Fleetingly sweet our numbered days,
Swift and completely they fade,
Here but for a moment in time,
For only as long as we are graced.

Embrace the good as long as I am able,
Live with purpose and breathe with faith,
Treasure each moment as if it were my last,
The splendid ones are few, none to waste.

Why squander my hours living bitter and cold,
In turmoil, rage, loathing, and anger?
Why fritter my short-lived instants away,
In malice, spite, resentment, and rancor?

I endeavor instead to cling close to the joy,
Each new sunrise does so kindly offer,
Love and accept the glorious cracked vessels,
So wonderfully, caringly made by their Potter.

Brand vindictiveness rare and hatred unheard of,
In conflict and confrontation disengage,
Turn a blind eye but break open my heart,
To those souls who seek to madden and enrage.

For we all fall far short of perfection,
But hold our value, our worth, nonetheless,
Forgiveness, understanding, and gentleness,
Are the gifts which I offer and am blessed.

Friday, April 21, 2017

CHRONIC ILLNESS: IS KNOWLEDGE ENOUGH?

Knowledge is not the same as understanding.  Knowledge is a mere accumulation of facts and data, while understanding requires a bit more.  It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden.  I am convinced there is a basic lack of understanding regarding the effects chronic illnesses have on the lives of those afflicted.  But though I recognize this deficiency, I do not believe it must necessarily lead to discord and strife.  Please allow me to explain.

You may have knowledge of my illness; perhaps you can even define it, explain it, and list its symptoms.  But you have not lived with Gastroparesis nor felt its effects on your own life.  As one who is unafflicted, you cannot fully appreciate the agony, the mental and physical torment of this punishing disease.  You have not met the horror of being surrounded by a virtual cornucopia of foods, of savoring their tempting aromas, of longing to take just a bite, and of ultimately having to reject them.  You have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have you desperately clung to the slowly fading memory of what it was once like to partake of them.  You have not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to your couch – or the bathroom floor.  You have not endured the never-ending daily pain which cannot be tamed and which drives you to tears, confines you to your home, chains you to your heating pad, prevents you from sleeping, and haunts you as you lie in bed contemplating how you might face it again tomorrow.  You have not watched your body wither away, felt the energy drain from you with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.

You may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but you cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians.  You have not felt the condescending glare of the doctor who has accused you of imagining or inventing your symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed you for the very existence of your illness, or who has admonished you for not trying hard enough to overcome its effects.  You have not spent your life savings, travelled cross-country, and held out hope that a certain new doctor will take your case and finally “see” your agony and alleviate your misery, only to experience the utter devastation of having your hopes dashed when this “tops in the field” doctor turns you away with a simple, “I’m sorry, but your case is too complex.” You have not anticipated healing and relief only to discover your “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on your symptoms at all. 

You may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but you are not the one who must look your child in the eyes and tell her yet again you will miss her latest performance, school activity, or birthday party.  You are not forced to deny your spouse a celebratory evening on the town or miss the family Christmas gathering because your body refuses to cooperate with the demands of such an outing.  You do not bear the burden of being unable to work or provide financially for your family, help with basic household chores and errands, or contribute in any productive way.  You do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do you live with the anguish surrounding all you have lost and all you can no longer accomplish.  You do not suffer the guilt of constantly disappointing others.

No, you may know of my illness, but you lack understanding on any meaningful level. 

Nevertheless, you need not wholly comprehend the full effects of my illness to offer your kindness and co-exist with me in peace and harmony.  I will settle for your knowledge alone if that knowledge is unaccompanied by judgment and reproach.  It is not necessary for you to intimately understand my deepest longings, aches, and needs, my fears and regrets, so long as you will simply offer support in the ways I desire and not in the ways you deem best.  You must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this cruel disease.  You need only sit by my side, present a listening ear, believe my struggles are genuine, offer comfort, respect my choices, acknowledge my efforts, forgive me my failings, and refrain from criticizing that which you do not – cannot – comprehend.  


Monday, April 10, 2017

A PATIENT (NOT SO SECRETLY) RESPONDS

















I am disturbed by Dr. Brian C. Joondeph’s article, “8 Things Doctors Secretly Want to Tell Their Patients” (http://www.kevinmd.com/blog/2017/04/8-things-doctors-want-secretly-want-tell-patients.html). While I understand the good doctor/author wishes to share the physician perspective on the topics in question, it strikes me that this piece exudes a tone of near resentment toward patients – toward the “patient as center” philosophy.  At the very least, it does not scream “patient as partner” to me, nor does it seek to reconcile patient and physician.  It simply points out perceived patient misdeeds and makes no attempt to reflect upon the possible reasons behind patient “shortcomings.”

I understand the challenges physicians face, and it is not that I find fault with those who wish to discuss the physician condition under our current healthcare system; nor do I wish for my physicians to suffer.  I would like for my physicians to be happy, fulfilled, and well-compensated for the care they provide.  I have had mixed experiences with doctors, but most I have encountered have been dedicated professionals who have provided skilled care and have treated me with dignity and respect.  I sympathize with physicians who must tolerate long hours, overcrowded schedules, under-compensation, and less-than-reasonable patients.  But, out of necessity, if nothing else, healthcare must be centered on the patient, as it exists to serve his needs.  And in any case, we should not be at war, intentionally antagonizing each other and manufacturing tension and drama.  Should there not be attempts at mutual understanding?

To this end, let’s begin with the physician’s points, and address them one by one from the patient’s perspective… 

1. “I’m worried about health care reform, too.” – Though you state that you appreciate the challenges patients face under the ACA (or any other healthcare program), I am not certain you actually do.  Your worries center around your financial concerns and the possible closure of your practice, but mine revolve around my health, my very life.  My finances are already in ruin because I am too ill to work, and my medical bills continue to mount.  I am barely getting by as it is, and if I have no (or very limited) access to affordable care, I will die.  You will simply lose your business.

2. “If you’ll be late or need to cancel your appointment, please let me know.” – This seems reasonable, and I will do my best; however, I expect the same courtesy in return.   If you are running late or will be rushing through my appointment in an attempt to “make up time,” please let me know so that I have the option of canceling.  My time is valuable, too, and I have likely gone through a lot of trouble to get to your office in my sick and weakened state.  Lengthy waiting room times, when one is vomiting, feverish, and one the verge of collapse, do not help the situation.  And please think twice about canceling my appointment at the last possible moment.  I do not appreciate prepping for a colonoscopy only to be told a couple of hours prior to the procedure that the doctor is “running behind” so we simply must reschedule.  Please understand, also, that, like you, I am not always able to give 24-hour notice of cancellation.  My life is chaotic.  I may awaken to a sick child, a car which decides not to run today, or any other number of unexpected and unplanned catastrophes.  Life is not always perfectly predictable.  Oh, and I receive no compensation when you cancel.

3. “You really need to… [fill in the blank]” – Yes, I am probably already well-aware that I need to… [X].  Now, I realize that you feel it is medically appropriate to tell me what is already very clear to me, but it is not necessary to do so in a condescending, hateful manner.  Often, it is the tone which is the issue and not the statement itself which I find offensive.  Believe me, there is a difference in saying, “You might really consider dropping a few pounds” and “You are fat!”  And in any case, your “edicts” are, in truth, merely recommendations to me, and I may very well see things differently based upon which quality of life aspects I wish to emphasize and which goals upon which I choose to focus.  You do not have the right to make unilateral decisions for me.  And one final point: not all of my health issues can be attributed to unhealthy lifestyle choices.  Sometimes, through no fault of their own, even when they have done everything right, people get sick.  They get infections, viruses, and diseases which were not caused by living a sedentary lifestyle or eating too much junk food. 

4. “Think before you call us.” – Well, the next time I am vomiting non-stop and scared out of my wits by the pain, I will try to consider how this might disrupt your evening.  That middle of the night call you hate receiving?  Got news for you: I hate making it, and if I were taken more seriously by ERs and physicians alike, I likely would not be taking this approach.  (Please see “Whatever Happened to Good Old-Fashioned Outrage” at http://melissarvh.blogspot.com/2017/02/whatever-happened-to-good-old-fashioned.html.)  And while we are at it, I would greatly appreciate it if you would think TO call me.  I deserve timely notice regarding lab results over which I have been wringing my hands with worry.  A follow-up call to check my status after a major procedure and reminder calls regarding upcoming appointments would be nice as well.

5. “Be polite to my staff.” – Politeness should always be the goal, of course, and that should go both ways.  Please also inform your staff not to take their frustrations out on ME.  Yes, that happens!  Eye contact, smiles, a simple “please” and “thank you” and an apology for long wait times would be most appreciated.  Please remind them I am a unique individual and not a number, and that though they might have asked the same set of questions to a hundred other patients, they have not asked those questions to me.  So, please forgive me and exercise just an ounce of patience should I ask for clarification or elaboration.

6. “I can’t always run on time.” – Nor can your patients.  Please do not assume I am not concerned about getting to appointments.  Many times, I have waited weeks, even months, to get in to see you.  I do not take that lightly.  So, if I am a few minutes late, it is not because I set out to ruin your schedule; rather, I was likely interrupted and delayed by one of life’s unexpected situations.

7. “Saying ‘thank you’ goes a long way.” – As mentioned above, it most certainly does, as does your kindness toward patients.  We all wish to feel appreciated.  Without me, you would not have a job, so please address me as a valued individual client.  I would love to hear how grateful you are for your loyal patients, like me.

8. “I’m only human.” – As are your patients.  As a matter of fact, we are sick humans.  I cannot always be at the “top of my game” when I do not feel well.   I am weak and struggling, sometimes in a fog, and, try as I might, I do not always put my “best foot forward.”  Neither do I welcome your criticism and judgment for my transgressions.  I am not apathetic or generally unkind; you see me at my worst.  I am doing the best I can, given the circumstances.  My apologies for the times I am less than perfect regarding the social graces.

In addition to the responses above, I beg you to please consider the following subjects we, as patients, would (maybe not so) secretly like our physicians to know as well:

1. I am frightened and unsure. – I have just been diagnosed with a disease or condition about which I know nothing – not the cause, the possible treatments, or my prognosis.  I have no idea how this will alter my life, and I am terrified to hear the answer.  In fact, I know so little about my condition I can barely formulate basic questions for you.  I fear you will mock me or that you will not believe me.  I fear you will not take my concerns seriously or will not focus on the aspects of my care which are important to me.  I fear my condition will worsen.  I fear I will die.

2. I am overwhelmed physically and emotionally. – In addition to my fears about our upcoming visit, I am coping with the very real daily negative physical effects of my illness and the stress related to it.  How can I cope with these symptoms for the rest of my life?  How will I work like this?  How will we pay our bills?  Will I be a burden to my family?  Will I survive to see my child grow up?  These matters weigh heavily on my mind, and I am drowning in worry.   

3. I am not stupid. – It may take some time for me to adjust and learn, but I am perfectly capable of understanding complex material and processes when I am comfortable with the language and terms and am given proper information.  I can make informed choices and wish to be presented with all my options as well as the potential risks and benefits.  I welcome your educated recommendations, but it is ultimately my life, and these are my choices.  Furthermore, rather than admonishing me to “stay off the Internet,” you should be encouraging me to do additional research regarding my condition and its possible treatments.  I need to understand what I am up against, and I cannot always trust that my physicians have the latest or best data about my condition, especially if it is rare.  Please welcome my suggestions and engage me in reasonable discussion as to whether the questions I raise are sensible concerns and the treatments I present are viable options.

4. I can handle the truth. – Please do not hide information from me.  I want and expect the whole truth about my condition.  Yes, I might be upset, but once I have a chance to process the information and evaluate my options, I will be just fine.  You do not need to hint around, speak with my family as if I am not in the room, or downplay the nature of my condition.  In addition, please do not attempt to define for me the seriousness of my illness; I will decide that all on my own.  That is not up to you to determine because your life is not the one impacted by this illness.

5. I wish to be believed and treated with respect. – I should not need to “prove” I am experiencing the symptoms I report to you.  If I am in your office, it is a pretty safe bet that I am, indeed, struggling.  When you smirk, seem uninterested, or dismiss my symptoms without further evaluation or discussion, it is difficult for me to believe I am being heard.  Further, please do not assume that because only a small percentage of the population is afflicted with a certain condition about which I am concerned, I could not be in that small percentage.  My fears may be justified.  And, finally, please do not tell me, “I wouldn’t worry about [X].”  You wouldn’t, but I do.  Explain to me why you do not believe I need further examination or evaluation. 

6. You are not seeing me at my best. – You are most likely seeing me at my worst.  I am weak and ill, and your personal situation and feelings are not my chief focus.  I am normally a very nice person, but these are difficult times.  Yes, you deserve to be treated well, and I should be polite under all circumstances, but I sometimes neglect the social graces when I am on the verge of a breakdown and in the middle of a health crisis.  Forgive me my failings and please do not reciprocate.

7. I don’t want to be here. – I am not inventing symptoms because I seek attention or have an unmet psychological need.  I am not an addict seeking drugs for a “fix.” I am not lonely or in need of your company.  I do not wish to waste your time or my money.  I am in the midst of a genuine medical predicament and could use your help rather than your accusations and scorn. 

With a little bit of effort and adjustment in perspective by both parties, many of these issues could be resolved.  Physicians and patients should not be at war.  We share many goals, and we are trapped in the same faulty healthcare system.  Can we not find a way to understand each other? 

Sunday, April 2, 2017

THE ROAD TO SUCCESS: AN ADVOCACY STORY


A post by Ms. Marsha Wright (www.iLoveMyFans.io) reminded me of this quote by Mr. Robert Collier, a successful self-help author: "Success is the sum of small efforts, repeated day in and day out."

I believe this is true in terms of advocacy. Some seek to be heroes, to lead some sort of one-man charge in the advocacy world; some seek celebrity endorsements as a solution to all our woes; some search for that one big campaign that will lead us all out of the darkness. In contrast, others refrain from participating in advocacy efforts because they feel their efforts are somehow less important or significant that what they view as the "major" players.

In truth, though advances in awareness are, at times, made through giant leaps, most progress is made gradually, incrementally, over time. And it is not those who seek self-glorification, fame, praise, or positions of leadership who lead. It is those in the trenches, fighting small battles and sharing small victories who usher in real change. It is not the generals who achieve victory; it is a joint effort by all involved.

Awareness is about our illness -- about finding solutions to the struggles we face. It is not about any one individual or campaign. It is larger than you and me, more significant than any group or campaign, and is led by the sum of us. Everyone here is equally important. YOUR success is MY success, and vice-versa. It cannot be any other way if we are to survive this cruel illness. Celebrate the successes of others -- for they are ultimately your successes as well!

Monday, March 20, 2017

CHAINED

























Chained to the beast,
Who would rob me of my soul,
Haunted by this nightmare,
Who can make me whole?

Sentenced to this fate,
But I have done no wrong,
My captor, my companion,
He appears to be so strong.

Trapped in this dungeon,
While the monster rages on,
He will surely slay me,
When his taunting’s finally done.

How can I defeat him?
Release my daunted soul?
Who is there to rescue me,
To unbolt the prison door?

I fear my days are numbered,
His looks have grown so cold,
I’d like to ask his reasons,
But I am not this bold.

I know not why he chose me,
Why this burden I must bear,
But there is little question,
I must soon escape his lair.

My body falls to ruin,
But that’s of little concern,
The greater battle blazes,
Reaches the point of no return.

The beast inflicts great sorrow,
His misdeeds do take their toll,
But though he ravages the body,
He must not reach my soul.

For he may hold the power,
To bedevil, inflict great pain,
But he must not persuade me,
That my life is lived in vain.

Shackled to my tormenter,
But inadequate is his reign,
My soul is mine alone,
And my choice it does remain.

Confined by the walls which surround me,
But my spirit can surely sing,
No cell can tether my soul,
Nor the hope to which I cling.

Chained to the wretched demon,
Who seeks only to devour,
But he knows not the day,
Nor the minute, nor the hour.

His power is but an illusion,
My fate transcends his command,
The key is beyond his reach,
But within the grasp of my hand.

My oppressor, my constant companion,
Unleashes his bitter fury,
He rails and rages against me,
But my fear, at last, is buried.

Though bound to the beast within me,
My spirit’s, unrestrained, free to soar,
This body is enslaved in his Hell,
But my fearless soul has been made whole.

Tuesday, March 7, 2017

BEYOND THE GARDEN GATE

Saved from Flickr.com


Just this side of the garden gate,
Much sadness to behold,
Left to contemplate my fate,
A plot where hope grows cold.

Jealous minds and hardened hearts,
The weeds that choke and bind,
Haughty and self-righteous tones,
Monstrous trees which block the light.

Souls are blackened by schemes and lies,
Which nurture fruitless and barren soil,
Where hate and envy flourish unchained,
Sow discord, hatch egregious turmoil.

The steely glances and belittling glares,
Take root in once tender sprouts,
Turn the beauty that might otherwise exist,
To misery, heartache, and doubt.

Arrogance, egoism, and blatant conceit,
Like shrubbery and underbrush abound,
Dream of finding a soft patch, my Eden,
But to this graveyard, I am desperately bound.

Towering walls and unyielding stones,
Shield the garden virtuous and true,
Defy my futile, half-hearted attempts,
To escape this pitch-black, cold tomb.

Weak I grow and fading fast,
The sun’s bright radiance escapes me,
But in the rubbish which mires my feet,
A vine appears to teach me.

Scales the walls, and under the gate,
It creeps, winds into my darkness,
Hearty and hale despite the night,
Grows nearer – “Come,” it harkens.

Follow its trail from my bitter dead plot,
Face to face with the glorious garden gate,
The vine, it beckons, “You hold the key,”
Swing the door – a path narrow and straight.

Beyond the gate, brimming with brightness,
Vibrant colors, lush growth do astound,
Fresh welcomes, open arms, joyous hearts,
Lively blooms which are everywhere found.

Approval peeks from the cracks in the stones,
Encouragement and praise line the walkways,
Gentleness and hope scatter the grounds,
Their flowers form grand, bold bouquets.

No immense, looming trees to block out the sun,
No weeds strangle the souls of the living,
No scornful judgments which stunt their growth,
Only mercy and tender thanksgiving.

Just outside the gate, bleak and foreboding,
The world turns so withered and dead,
But in the garden, radiant and blossoming,
Souls take flight; they are delivered from dread.

Saturday, March 4, 2017

CHOOSE TO RISE

The mood in my Gastroparesis support groups is somber, to say the least. I am reading quite a few posts from people trying to find a way to move on from their "past" lives -- the ones they lived prior to diagnosis. This is a difficult step. It requires much soul-searching and self-evaluation. I often find myself longing for that former life, the one that seems now as if it existed in another world, but I cannot go back, and I think my mind sometimes paints those days just a little rosier than they perhaps were. In any case, I struggle every day to find my place in this new post-diagnosis world, as do nearly all the members of my community. This is not the life I would have chosen for myself or for any of them, but it is the hand we have been dealt, and we search to find the positives in this dark, cruel new reality where our very existence is threatened. There is still good in this life, but it takes a different form, and, in the darkness, it is a little more difficult to see sometimes. But there is light, and there is hope, and if you continue to seek it, you will find it. 


Thursday, March 2, 2017

TIME TO GO?





**Note: Today's blog is a post on my Facebook wall.  I include it here because I fear it will not be available to my community members (or me) after it is actually posted, and I wish for my group members to be able to see my final plea.**






My salute to the Facebook Nazis this morning – Day 6 of my punishment under an unjust, arbitrary dictatorship. Generally, if I wish for people to follow the rules, I let them know what the rules are. Punishment for neglecting to obey regulations and stay below limits which are not clearly spelled out is neither effective nor fair. It serves as no sort of deterrent since I am unable to discern which specific actions led to my imprisonment.

I have tried my best to obey the guidelines and edicts of this format, but for the life of me, I cannot read the minds of the Facebook "powers that be." So, I find myself unable to post in my own Gastroparesis support and advocacy groups – some of which I created and some in which I merely administrate. Why? I do not know. I uploaded a file to several of my groups, and my best guess is that this somehow triggered automatic warnings. I do not understand how uploading a file in my own groups, where people join and remain at their pleasure, with no requirement they stay if they find it displeasing, can be an issue for Facebook.

I have attempted to contact Facebook in regard to this in every way I know to be possible, but I am met with silence, or worse yet, form replies that offer no guidance or assistance. I will likely never receive an explanation as to why I have been restricted and will surely receive no notice of how long this punishment will last. I will be offered no grace, no reprieve, and no pardon for my clearly serious crimes. I am at the mercy of a not-so-benevolent tyrant.

Facebook owes some serious consideration to my appeal, as I likely represent the views of countless others.  Furthermore, Facebook needs to take a good, hard look at how it views its non-paying clients who, though exposed to endless advertising, clearly have no rights and no say over how they are governed.  We are potential customers for Facebook’s advertisers, who bring many of our friends to this forum and create a market for their paying clients.  But we are also human beings worthy of respectful and fair treatment.  I am fairly certain there is technology available that would allow Facebook to more perfectly distinguish between “spammers” and “bots” and genuine human beings.  If that is the main concern, I have repeatedly attempted to allay fears.  I have used every means available to me to try to reach those in power and establish just that – that I am indeed a human – but my appeals are ignored.

I have been a Facebook member for nearly 10 years, and I have served in the groups for about the last three.  I have tolerated this ill-treatment for quite a long time because I love my friends here, and I am quite dedicated to my community and my groups – but there are limits to what I will allow myself to endure. I realize that by posting this, I risk having my account permanently disabled, and I regret that this may be the ultimate outcome. I hope Facebook does not choose this course of action. I do not want to leave you all, but I cannot function under these circumstances. It is stressful and frustrating – and, in the end, I cannot be of any use or value to you when I cannot post even the most basic information.

My purpose in life for the last three years has been to do everything I can – as much as I can – to advocate and spread awareness for our Gastroparesis community so that we may be heard and recognized, and it has been my most treasured delight to serve and assist all of you coping with the devastating physical, emotional, mental, and social aspects of this cruel illness. It has been my fondest joy to share in your daily life, both the struggles and the small victories, and to, in turn, share the most private parts of my life with you. I love you all, and that will not change.  I do not know how to thank you enough for the kindness, friendship, and support you have shown me.  You have truly changed my life, and for that, I owe a debt I can never, ever repay.

Should my account disappear, please know that I did not exit willingly, and I have not abandoned you.  I will continue to work on our behalf outside of Facebook should it no longer be an option. I have a life and viable alternatives, and this may force my hand to pursue these. Should this occur, Ms. Emily Randolph Scherer, Ms. Cheryl Lynn Raudebaugh, and Ms. Freda Sullivan will continue to serve you in our main and sister groups, and Ms. Trisha High Bundy and Ms. Deb Shrader-Trotter will maintain operations in our Fighting for Change groups.

You have my deepest and most sincere apologies for what now may well occur.  Please know I do not wish to leave, but I see it as almost a foregone conclusion at this point. This latest ban might not be permanent. I do not know; perhaps it will be lifted. But even so, how long before I am in this predicament yet again? It is an intolerable situation – and, unfortunately, it does little good to voice my objections.  I am ineffective, unproductive, and useless to you under these circumstances, and I fear I cannot alter my behavior enough to meet Facebook's enigmatic requirements.

Again, I have no plans to willingly depart, but I believe you deserve a forewarning about what likely lies on the horizon. I must look myself in the mirror each morning and live with the choices I make. I am not a person who willingly tolerates mistreatment, and I will champion what I believe is right every time, regardless of the consequences. I speak out, stand up for myself – always have – and if that means my account is disabled, then so be it.  I can hardly bear the thought of that, but I will not stand by and pretend this is reasonable.

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

Website: www.curegp.com

Twitter: @MelissaRVH

Google+: plus.google.com/u/0/+MelissaAdamsVanHouten




E-Mail: gpfightingforchange@gmail.com

Tuesday, February 21, 2017

GUILTLESS

I have never felt guilty for being ill; yet, I see so many in my Gastroparesis support groups who struggle with this issue, and I cannot quite grasp why this is the case.  I can understand feeling frustrated or sad because of the limitations this illness places upon us, but guilt is another matter altogether.  Guilt implies that the person living with the illness is somehow culpable, responsible, or deserving of blame for the effects of said illness, and this is most certainly not the case.

Yes, our lives have been altered, perhaps forever, by this cruel, unforgiving disease.  Many of us can no longer perform routine chores, run errands, participate in the activities we once enjoyed, maintain employment, or reach once easily attainable goals we set for ourselves pre-diagnosis.  This is reality.  It is a consequence of our illness – but it not an act of the will.  In other words, we did not ask for our illness, we did not cause it, nor do we welcome it, embrace it, or seek to perpetuate it.  We did not fall ill because we are being punished for some wrong-doing in our past or because we are somehow so detestable that we “deserve” this disease.  Bad things happen; they just do.  They happen with no rhyme or reason and are the result of causes and forces that are often unknown to us.   

It stands to reason, then, that if we are not to blame for our illness and all the restrictions that accompany it, we should not feel any sense of guilt.  Yes, I realize that medical professionals, employers, family members, and friends sometimes behave as if it were our fault and do their best to cultivate our feelings of inadequacy and shame.  They expect us to behave exactly as we did prior to diagnosis, and they are most unforgiving of any perceived failures or shortcomings on our part.  But their opinions are not fact, and we do not have to believe these misguided notions. 

Hear me loud and clear, please:  YOU ARE NOT TO BLAME FOR YOUR ILLNESS!  You did not cause it, and you cannot wish it away, nor will it away, nor always regulate its adverse effects.  The limitations are real.  They exist.  They are not all in your mind, and they are not under your control.  You are not lazy or worthless or somehow “lesser” because you cannot meet some unreasonable standard of perfection set for you by the healthy people in your life.  Your illness will not go away if you ignore it, attempt to hide it, try harder, or pretend it does not exist. 

Now, I am not suggesting that those of us living with chronic illnesses such as Gastroparesis simply lie down, accept defeat, and stop striving to achieve.  I am not implying that we should give up on our dreams, our goals, our aspirations, or our hopes.  I am not endorsing an approach whereby we stay within our comfortable boundaries and never test the limits.  I do this every day.  I push myself beyond what is sometimes reasonable because I wish to remain independent, unfettered, and feel a sense of “normalcy” in my daily life.  It is good to push, I think – but it also necessary to recognize that your body and your mind can only be stretched so far before this behavior causes genuine harm. 

What I am suggesting is that you are sick, genuinely sick, and you are doing the best you can.  Give yourself some credit!  You are surviving despite your many hardships and challenges; despite the unkind words uttered and foolish beliefs held by those who have not lived a single day in your shoes and have no idea what you contend with; and despite the cruel physical, mental, and emotional toll your illness takes. 

You owe no apologies to anyone.  You are strong – fighters, warriors – and you should be proud.  Refuse to believe the lies that would keep you in the dark pit of despair and hopelessness.  See them for what they are – misguided, untrue, foolish notions that should be summarily dismissed and cast off.  Lose the guilt.  Stand up and speak up for yourselves.  You are valuable and worthy of respect just the way you are – limitations and all.


Thursday, February 16, 2017

WHATEVER HAPPENED TO GOOD OLD-FASHIONED OUTRAGE?

** A brief note regarding today's blog: I have encountered many dedicated, compassionate physicians, policymakers, and other players in the healthcare field since being diagnosed with Gastroparesis in February 2014.  There are those who work diligently to improve our very flawed medical system, who are committed to providing excellent medical care, and who support research and other initiatives designed to improve the quality of our treatments and our healthcare system in general.  This post is not directed at those kind souls.  But despite the efforts of those who would better our circumstances, my community remains in crisis. Unfortunately, there exist in the medical field many who do not understand the serious nature of their work and underestimate the damage they inflict on my community.  This negligence must not be allowed to continue.  I speak for those in my community who are (for countless reasons) unable to speak for themselves.  Our voices must be heard! **
















Please allow me to share what I witness in my Gastroparesis support groups every single day. A typical post goes something like this:

"I am scared. I am dehydrated and feel like I am going to faint every time I lift my head. The room is spinning.  I have not been able to eat or drink anything for days now.  It has gotten to the point where I cannot even keep down sips of liquids.  I am in so much pain.  I just want the pain to stop, and I want to be able to eat again.  I think I am going to die, but I do not want to go to the ER because they will not do anything to help me. They will just mock me, call me a drug-seeker, and send me home; then, I will have a huge medical bill and I still won’t feel any better."

My group member’s local GI knows little about Gastroparesis – and has, in fact, already given her much misinformation.  She has tried all the medications he has offered but to no avail.  The one antiemetic that seems to help is not covered by her insurance, or it is covered only in small quantities, amounts that do not get her through the long nausea-filled days.  Likewise, she has heard about some new and innovative treatments, but her doctor does not have much information regarding these procedures, and, besides, it is likely her insurance company will consider them “experimental” and refuse coverage of them just as they rejected additional quantities of the medication that would have helped ease her nausea.  In addition, her doctor has denied her pain medication because he does not want to “turn her into an addict.” He assures her it is best to just “learn to live with the pain.”

“She should find a better doctor, one who will treat her properly,” you might interject.  Yes, well, that would be nice, but this member lives in a rural area, and her options are limited.  She has no family or friends to help her travel, so even getting in to see the local doctor is difficult for her.  There is no specialist anywhere near her.  Moreover, if she can somehow find an expert within traveling distance and secure a ride, she must wait for months to see him because he has no openings before then and is not willing to squeeze her in. 

She does not know where to turn.  Meanwhile, her health continues to deteriorate.  She cannot tolerate even liquid forms of nutrition, and her weight drops to dangerous levels.  She becomes weak and malnourished and begins to fear for her life.  She calls her primary care physician who tells her to call her GI.  Her GI says there is “nothing more he can do” for her and advises her to “go to the ER if it is really that bad.”

Some of you will object: “But the ER is not the appropriate place to address this – it is meant for imminent life-threatening crises only – heart attacks and such.”  Yes, perhaps, but, as we have established, this member has not received proper assistance from her doctor and she cannot get in to see the specialist.  Her weight has now dropped below 80 pounds.  (DID THAT REGISTER?  Eighty pounds – and this is an adult, not a child.  Does anyone honestly NOT view this as deadly?)

Out of sheer desperation, she decides to go to the ER.  She must beg her neighbor to take her because she has no transportation and is too ill to drive herself anyway.  She waits for hours to be seen, and once she is called back, she encounters nurses and ER physicians who know little more about her illness than her local GI knew – perhaps not as much.   The one thing they are absolutely certain of, though, is that this wretched individual sitting before them is without a doubt a drug-seeker who has invented her pain so that she can get her latest “fix.”  After all, everyone knows “there is no pain with Gastroparesis.”  They seem relatively unconcerned about her non-stop vomiting and shrinking frame and summarily dismiss her concerns that she will surely die if they do not intervene.  At best, she is given fluids and sent home – no hospital admission and no direction as to how she can obtain long-term help.

Now we have a situation where this member has received no aid from any of the places she has approached – not from her regular doctor, her GI, or the ER.  Perhaps the ER has stabilized her to the point where she will not die tonight, but she will be in crisis yet again in a few short days because her issues have not truly been addressed and resolved.  Furthermore, she has left the hospital feeling shamed and demeaned because she dared to ask for assistance.  She turns now to my support group and begs for help because she knows that it is a waste of time and money to consult her physicians or return to the ER.  She hopes desperately that someone in the group can give her sound advice.  She now knows her GI will tell her to go to the ER, and the ER will turn her away or do nothing to rectify her issues.  And so, she is caught in a vicious cycle and learns rather quickly that it is pointless to seek help from the (supposedly) available resources.   (Oh, and she has just received that massive bill she feared as well.  How will she pay that since she is disabled and cannot work?)  This is passing the buck at its best!  Quite the dilemma for a seriously ill patient who needs immediate attention.

The upshot of these circumstances is that, regardless of who you ultimately hold accountable or believe deserves the blame, my people remain in crisis.  No one wishes to step up, take responsibility, and actually assist these patients.  No one puts their needs first.  It is so easy for everyone involved to simply wash their hands of the whole affair and turn my people away as if their lives mean nothing.  Doctors pass them on to the ER, and the ER hides behinds rules and procedures to justify sending them home to, at best, certain pain and agony and, at worst, death.  Many ER physicians are all too happy to patch my people up for a brief moment and then toss them out the door.

Please, tell me what my community members are supposed to do when facing this scenario.  Where can they go for assistance when their local doctors lack the knowledge (or will) to treat them properly and the ER refuses to offer any long-term solutions?  There are no other options for these people.  This is unacceptable care – plain and simple!  But it is more than that: It is a callous, inhumane attitude on the part of all parties involved.  It is people hiding behind policies to justify unjust actions. 

And so, I say to those of you out there in the medical profession who smugly accuse my community members of faking their symptoms, deny their very real misery, label them drug addicts because they cannot endure one more moment of pain, and turn them away hopeless and dejected... HOW DARE YOU!

I have written calmly and rationally about this situation, but the dark, horrible reality is that every single day my people are slaves to your faulty medical system which denies them basic human compassion and relief.  The truth – and their stories – need to be told.  HOW LONG WILL YOU KEEP US ENSLAVED IN THIS SYSTEM?  HOW MUCH MORE MUST WE ENDURE?  And moreover, where is the empathy, the kind touch, the basic human decency you likely once believed in when you took your medical oath? Why is it so difficult to educate physicians and ER staff about Gastroparesis care and direct them to treat us with gentleness?

These are HUMAN BEINGS... your fellow man.  They have few options, and they are hurting beyond words.  How can you so blithely dismiss them?  They have lost so much – nearly everything in some cases.  Do you not understand that?  They have lost not just their ability to eat, but their friends, their jobs, their wealth, the comfortable and pleasant lives they once knew. YOU are their last hope, and YOU are failing them!

Where is the empathy?  No – where is the OUTRAGE?  My people are suffering and dying while the medical world and our healthcare system turn a blind eye and a deaf ear to us.  How many more deaths are acceptable?  Is there no one willing to help my community? Is there no one willing to intervene to save these people?  My patience is wearing thin, and I grow weary of the excuses.  So, I ask again: Where is the outrage?