Oh, the Joys of Advocacy! Should I Throw in the Towel?

Let’s talk about GP reality!  GP reality is that every single day I struggle to get out of bed, and when I accomplish this, I sometimes wish I hadn’t.  GP reality is that I am often nauseous and occasionally vomit.  I am starving, miss food, cannot eat, and am in pain much of the time.  My stomach and abdomen are bloated, and they are burned and permanently scarred because I must use a much-too-hot heating pad just to make it through the day.  GP reality is that I can almost never leave my house, and when I do manage it, I can only stay out for short periods of time and pay for it dearly the next few days.  I miss nearly all family gatherings and significant events in my husband’s and daughter’s lives.  GP reality is that I am so tired I cannot walk up the stairs at night by myself anymore, and, in fact, I cannot even remember how I got into bed most evenings.  GP reality is that I see people suffer and die around me every day and wonder if I will be next. GP reality is that no one wants to hear this.

GP reality is that even though I am quite sick, I work in the support groups.  And because I am an administrator in many of them, I have to make tough decisions based on the rules and what is best for the groups – and many people hate me for that.  No matter what decision I make in a dispute, or regarding a rule, someone ends up unhappy with me.  I try to be gentle, and I try to explain, but it does not ultimately make a difference.  They still detest me.  Yet I go right on making those difficult decisions, despite their attitude and push-back, because I care about the groups as a whole and want them to survive.

GP reality is that because I have chosen to advocate, I sit here sick at my computer every day, all day long, and beg someone, anyone, to help us.  GP reality is that very few do.  Most of what I do is ignored by those inside and outside of the Gastroparesis community.  GP reality is that probably very few are reading this. 

GP reality is that not all those who proclaim “love” and “light” demonstrate these qualities toward others.  I am mocked, threatened, harassed, and told I am an embarrassment.  I am accused of ignoring and dismissing people, stealing ideas, taking credit where none is due, and “bullying” people.  GP reality is that no matter which projects I decide to pursue, someone thinks these are not quite as worthy as their own “pet” projects.  GP reality is that I can get almost no one to pay attention and contribute anyway. 

GP reality is that when I say “my” people, “my” groups, and “my” community, I am accused of being on a power trip or of thinking that I have some sort of leadership position here that I do not officially hold.  GP reality is that it is not because I am egotistical or seek control.  No! Rather, I refer to people in the Gastroparesis community as “mine” because I am a part of this community.  These people are my life.  I love them, and I claim responsibility for them – every one of them.   Indeed, I have an obligation to them, and this means that I cannot step aside, avert my glance, and ignore their problems.  No, I do not forget them for a single second.  I share their disease, their pain, and their hopes, dreams, and prayers for a cure. 

GP reality is that though it makes me uncomfortable to discuss the most intimate parts of my life, I share very personal stories, thoughts, and feelings in an attempt to make people understand what we go through, only to be told that I am self-promoting and egotistical.  GP reality is that my words, and my story, are the only weapons I have in this battle against GP.  GP reality is that though I try very hard not to harm or upset anyone, it is never enough, and those who want drama and strife still actively seek to create it, even to the point of inventing stories. 

GP reality is that there are those in this community (individuals and organizations) who refuse to share articles, posts, pictures, memes, events, blogs, and other awareness-related information simply because I have written or endorsed it.  There is no thought or concern regarding what is beneficial for the community as a whole.  If it does not promote their own personal cause, then it is not acceptable.  If I do not mention their name, their cause, or their organization, then it simply does not get shared – and, in fact, they work to shut down such information entirely – merely because it was not them or their group that accomplished the goal or initiated the movement.  GP reality is that everything I do now is public, every breath I take is scrutinized, and if I have an “off” day, I lose followers – which means I hurt our cause.  GP reality is that this is a heavy cross to bear.

GP reality is that we, as a group, are largely ignored, that very few care about our plight, and that even the ones who do are highly unlikely to get involved in any meaningful way.  GP reality is that we push for awareness proclamations, bills, disability, better medical care, effective treatments, and a cure – but that these things will not likely come in our lifetimes.  GP reality is that right now, at this moment, many of us are mistreated, misunderstood, receive sub-quality care, are in financial ruin due to unemployment and outlandish medical expenses, and that we mostly go unnoticed. 

GP reality is that GASTROPARESIS STINKS!

But you know what else is GP reality?  GP reality is that even though I am sick and many, many times want to throw in the towel, I keep going – as do all of you.  We find ways to “suck it up” and move on.  We tolerate the pain, nausea, and weakness, and we manage to get through the seemingly endless, meaningless days, hoping for something better in the future.  We do what we can, despite the limitations this illness imposes on us, and we live to see another day.

GP reality is that even though some in my groups dislike my pronouncements (and me), most do not.  Largely, they understand that not everyone will always agree upon specific rules and that disputes are bound to happen.  We often have different perspectives and manners of dealing with our illness and the complications of life that stem from it, and the bulk of our members accept and respect the choices of others.  Most people enjoy the groups and find them to be a source of support, information, friendship, and understanding.  They are safe havens for the vast majority of GPers who join.  GP reality is that most group members come into these groups every day and try to help people, complete strangers, because they care and want to make a difference in the lives of others.  They are kind, compassionate souls who sacrifice their own comfort and set aside their own needs to assist those who are lost in finding a way to survive this cruel disease.

GP reality is that though I am often harangued for my advocacy work, I am also praised and thanked far more than I deserve.  Many people here go out of their way to show their appreciation with their kind comments, “likes,” and private messages expressing their gratitude.  Some have even sent cards and gifts.  Others simply follow along and remain on my friend list and in my groups, which is, in and of itself, a means of support.  GP reality is that though I often feel like I must defend myself against untrue and unkind accusations, the pressure to do so comes only from me. 

GP reality is that when I want to “throw in the towel,” scores of you write me or comment on my posts to show me that I matter and that what we are all trying to do together matters.  GP reality is that I have real, true friends here who show me more gentleness and support than I have ever known before in my life.  And every now and then, GP reality is that someone “important” out there notices an article, meme, poem, or video that I have made and shares it.  Occasionally, someone contacts me to let me know that we are being heard and that there is hope for the future, and on rare occasions, even an organization that finds me distasteful admits that advocacy is really taking off and our efforts are being felt. 

GP reality is that, sometimes, I have a far better turnout for “green” events than I expected, or a project like “Right Care Action Week” inspires those who normally pay little attention to take notice – or even to participate.  On occasion, someone who has never heard the word “Gastroparesis” calls or writes to let me know that because he saw my blog or video, he now knows of our struggle.  And there is the hope that one day, one of our projects, perhaps #TakeABite4GP, might really take flight outside of our little GP community.  GP reality is that it only takes a few people in the right places to get us the help we so desperately need.

GP reality is that though I detest this illness and the damage it has done to me and so many of my friends, I am truly far more blessed than I was before being diagnosed with Gastroparesis, and I am likely wiser, more compassionate, and more connected to others than at any other time in my life.  I have experienced genuine kindness, understanding, friendship, love, hope, and belonging.  I am more keenly aware of the pressing needs of those around me and of how desperately they require help.  GP reality is that I now have a purpose.  And that purpose is you – it is serving the needs of my Gastroparesis community, the chronic illness community, and my fellow human beings.  GP reality is that I need to learn how to “shake off” the negative comments, attacks, jealousy, and harassment and do what I know I need to do: advocate. 

Yesterday was a very bad day – one of the worst I have ever had – but today, I still stand.  My community is in need.  My friends are suffering.  How can I turn my back on that?  I am weary, and I get discouraged, but I have to continue the fight.  It is life or death. 

So, I ask you to please pardon my rants, my insecurities, my lack of understanding, my bad decisions, and all my other frailties.  I beg you to forgive me for not doing more, for my lack of ability to accomplish our goals, and for all my other failings.  GP reality is that it is not due to lack of desire or will.  GP reality is that I am trying. I am trying.

TAKE A BITE 4 GP!

Thank you for your interest in our new awareness campaign: ‪#‎TakeABite4GP! We were inspired by a movement that the Cystic Fibrosis Foundation recently undertook and adapted it to fit the needs of our community (https://www.cff.org/Take-Action/Raise-CF-Awareness/Raising-Awareness-With-TakeaBreathforCF/). We are hoping many of you will wish to get involved by creating your own brief clip and by recruiting friends, family members, medical professionals, the media, and anyone else willing to join in this effort. Challenge them to create a video or snap a picture that will help us spread this campaign and increase awareness for GP!

We would love to see supporters of our Gastroparesis community "Take a bite for GP!" Can't eat even a bite? No problem – hold an empty spoon. Don't like video? Hold a sign and take a picture! The idea is to get people to notice that we cannot eat with the ease that "normal" people can. Be creative. We know you can!

If you would like to include a request for donations to one of our digestive disorders organizations, we have set up two funding sites/links for your convenience:

·         International Foundation for Functional Gastrointestinal Disorders (IFFGD): www.razoo.com/us/story/Take-A-Bite-4-Gp

·         Association of Gastrointestinal Motility Disorders (AGMD): https://www.razoo.com/us/story/Take-A-Bite-For-Gp

The intention is to start spreading the word and creating these brief video clips and/or photos for release. Post them on your personal pages and all over social media sites. Challenge your loved ones to do the same. We hope to have the campaign off and running during July and in full swing during August, our Gastroparesis Awareness Month. We want to see these clips all over social media!

Hope you will join us and spread awareness for GP!

** For additional information, discussion, and ideas regarding this campaign, please join our public group at https://www.facebook.com/groups/TakeABite4GP/.  For more information about GASTROPARESIS, please see the brief summary below. **

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Gastroparesis literally means “paralysis of the stomach.”  It is a digestive motility disorder in which the stomach muscles, controlled by the Vagus nerve, 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.  (Some researchers and physicians theorize that in such cases the cause may be a viral infection, but this has not been scientifically proven.)

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.  This test allows one’s doctor to track the rate at which food travels from the stomach to the small intestine.  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.

VIRTUALLY ALIVE?

I woke up this morning to two more deaths in our Gastroparesis community.  These days, I dread opening my computer because it seems there is never a break from the death and grief that surround us.  I was expecting to put up a cheery post about Virtual Advocacy Day.  I was all prepared to write a nice little commentary on how we should fight to be heard – ready to try to spur our community into action.  But instead, I was once again forced to post the ever-looming green candle that I have come to both love and hate.  I no longer have unique or special words to announce these passings.  I have offered prayers and condolences so many times that I cannot find a new way to express my sorrow.  I want to curl up and hide somewhere; but it is Virtual Advocacy Day, and we have a bill that needs to be passed, so I once again tell myself all the many reasons I must ignore my feelings and move on with the day as planned.  Indeed, if I need motivation, it is times like these that should inspire me into greater action. 

This grief and these deaths, this fear that it will be one of my very close friends today or that perhaps it will soon be me, this love I have for all those who have passed away and for all those who very well could, this is why I advocate.  These people, who fight so hard to stay alive and to remain upbeat, to live their lives as if the threat of death did not hang just above them – they are why I cannot remain silent.  It is because of the many souls in our GP community who come into our groups every single day and do their best to spread cheer, offer advice and information, and speak kind words to those in dire need that I do not sit and stew in my grief.  And it is for those poor, weary, struggling friends who are in physical agony, who are fighting alone with no one to help them or comfort them, who can no longer afford to care for themselves and their families because of their hopeless financial situations – the mounting medical bills and unemployment, that I pull out my soapbox and encourage others to do the same.

I hate these green candles for the deaths they proclaim, but I love them for the beautiful souls they represent.  These are not people who “gave up” or “lost” the fight.  Nothing could be further from the truth.  No, they battled as hard and as long as they could against a vicious illness that robbed them of everything and against which they had few weapons.  The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships.  These are not people who failed; they gave it their all and fought to their last breath.  They inspire us and compel us to continue to wage our own wars against the cruel illness that ravages our bodies.

They remind us that even in the midst of pain, grief, and looming death, life is precious, and we must live it to the fullest because we are not guaranteed a single day.  They implore us to believe that we did nothing to deserve this affliction, that we are not worthless, or valueless, or insignificant, or “lesser” because we fell ill, and that our lives MATTER.  We are ALL fighters, and we are doing the very best we can to survive. 

But we merit so much more than mere subsistence.  Indeed, our goal is to flourish.  We desire and warrant treatments that allow us to thrive.  We seek the kind of support and respect, treatment and conditions, and attention to our needs that will allow us to genuinely LIVE our lives rather than spend them in hospital beds and dark lonely rooms, struggling to meet basic needs, consumed with pain and fear.  We deserve a life free from the limitations imposed by Gastroparesis.

And so, I advocate – day after day, all day long, without ceasing.  I post on my personal pages, in groups, all over social media, and on websites.  I write articles and poems, create memes and graphics, establish and administer groups, and invite you to “green” events.  It is my duty to myself and to all the members of this community to do so.  I cannot look away and pretend that all is well.  I cannot ignore the pain, loneliness, hopelessness, despair, and death that surround me – and I hope that none of you can either. 

I ask you all – members and non-members of the Gastroparesis community alike – to please help us in our efforts to find an end to this life-altering, destructive, and often deadly disease.  I ask you to sign our petitions, support our bills and proclamations, send letters to your congressional representatives, and light your green candles for those who have fallen.  Educate your family, your friends, your doctors, the media, and the public.  Join our events and shout our pleas from the rooftops and streets if necessary.  DEMAND better treatments and a cure for those in the GP community.

Please do not avert your glance.  Do not ignore our pleas.  There is no one else – only you.  We will not be magically cured or relieved of our burdens.  We need YOUR help – every single one of you, ill or healthy.  We cannot afford to sit back, back down, remain complacent or apathetic, or cease our awareness efforts.  Our very lives depend on it.  How many more candles can we bear?

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We encourage you to join in our Virtual Advocacy Day and fight on our behalf to pass HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, which would expand research and promote awareness of functional/motility GI disorders such as gastroparesis. This bill is designed to help promote education of physicians and the general public, increase efforts to find new and effective treatments, expand clinical research, and create new medical centers designed to study these disorders and share information with others. I urge you to read the text of the bill and contact your representatives. Ask them to sign on as cosponsors and support this bill! I cannot overestimate the importance of this bill. You can find additional information and read the text of the bill at either https://www.congress.gov/bill/114th-congress/house-bill/2311 or https://www.govtrack.us/congress/bills/114/hr2311.  You can electronically sign and send a letter urging your congressional representatives to support HR 2311 at https://buildquorum.com/actions/1996.

Please consider joining our event at https://www.facebook.com/events/1725246334422271/.  Show our Congress that we are indeed 5 MILLION STRONG!

THE OTHERS

We walk among the shadows

And live behind the veil,

Locked in another world,

One dull and dark and pale.

Just a few shades shy of whole,

Peering now through the looking glass,

Mired in this desolate land,

Remembering fonder times past.

We once knew light and laughter,

Lived among the living,

Once strolled among the Others,

No apprehension or misgiving.

We cannot now embrace them,

Just beyond our reach,

They turn as if to stare,

Feel their gaze, but they do not see.

Invisible?  No – but shrouded,

Enveloped in a mist,

The others mill about us,

As if we do not exist.

They go about their carefree days,

Oblivious to our plight,

Ignore the gaunt apparitions,

Though we plead with all our might.

Our words, they must be muted,

Our appearance obscured by the haze,

Our struggle to cross back to their realm,

Unnoticed, unaware of our pain.

We yearn to feel the sunlight,

Co-exist in their brilliant world,

We cry out to be resurrected,

They hear, but we are not heard.

Dear Others who have such blessings,

Such contentment and such peace,

“Won’t you help us?” we beseech you,

We beg for our release.

Healthy and whole on the outside,

Free from the invisible cage,

You who are dead on the inside

Do you notice our cruel fate?

You who have been granted wellness,

Who know no pain or despair,

Pull back this shroud, this curtain,

That prevents us from joining you there.

Open your hearts to our calling,

Let your ears hear our distant cries,

Shine a light into our blackness,

Shed the scales that cloud your eyes.

For the veil between the worlds

Is your choosing, your will, your design,

And the unseen partition that divides us

Must be removed by the enlightened side.

Your eyes are blurred by callousness,

Instead of heartfelt tears,

But you can remove the blinders,

Your vision, at last, can be clear.

From behind the window, we entreat you:

Break the panes and remove the shards;

Crack open your shielded hearts,

And topple this house of cards. 

The ghostly world that entraps us,

Imperceptible but to the chosen few,

Can surely be made apparent,

Can again appear in plain view.

We ache to walk among you,

Leave this world so ethereal and frail,

Endeavor to rejoin you Others,

Are our petitions to no avail?

Who among you holds the mercy,

The tenderness and grace,

The perception and the wisdom,

To save us from our dark fate?

Please hear our unsung malady,

Find the compassion for which we long,

Once again embrace our presence,

Usher in for us a new dawn.

ABOVE THE ABYSS

The fathomless abyss

Encircles us all,

Beckons, summons,

Grows ever-nearer the call.

We dance on the edge,

Counting the days,

Grapple for footing,

In this cold, desolate place.

Watch those around us

Succumb to its pull,

Teeter on the rim,

In this life, uncertain and cruel.

Its dark, deadly hand

On our hearts has a grip.

We struggle, hold tightly,

Try not to slip.

Peer into its depths

And ponder our fate.

What lies below?

What blackness awaits?

A terror of our own making,

Yet difficult to avoid.

Our hope sometimes wavers,

Our faith is devoid.

So unfair, so unjust;

No reason, no rhyme.

How close now? It’s looming,

Fear we are running out of time.

We push it aside,

And run from its edge,

But at the same time, wonder

What is there to dread?

So easy it would be

Into its depths to descend,

Fall into the darkness,

Let our pain and hunger end.

Enticing, yet frightening –

Do we embrace or decline?

It’s a game, a dilemma

That plays out in our minds.

We long for answers,

For an end to this torturous reign

Strive to understand, to contend,

To stay sane.

The chasm, it calls,

It entreats, it insists,

But we rail against it,

Raise our fists and resist.

Somehow claw our way up

And fight to survive,

Cling to a flickering hope,

And resolve to stay alive.

Make it to the daylight,

Just to begin it all again,

Find the will to go on,

To endure to the end.

Far above the chasm,

Well above the abyss,

Lives a light, a beacon,

“Remain,” it insists.

So we pray for those fallen,

Beg mercy for those on the edge,

Find a way to crawl forward,

Back away from the ledge.

The boundless pit of despair,

Of hopelessness and death,

Ever looms before us;

Yet we pause, take a breath.

We are here a moment more,

Must hold our ground, refuse to slide,

As we dance on the edge,

Walk the tightrope, abide.

Life is fragile, it’s uncertain,

And tragedies abound,

But we are here, and we are blessed,

Meaning is to be found.

The Light from above,

Which sometimes blinds and obscures,

Also has the power

To heal and to cure.

It can give us the will

And the strength to go on,

Surround us with mercy

Usher in a new dawn.

Surrounded by sadness,

By blackness and grief,

It steadies us, uplifts us,

Provides mercy and peace.

Seeps into our souls,

Drags us up from the pit,

Shines a beam into the darkness,

Brings us out of the abyss.

A Quiet Truth

I have been thinking about my mother quite a lot this Mother’s Day.  She passed away nearly six years ago, and since that time, I have reflected often upon our relationship.  I was never really very close to my mother.  I never understood her; nor did she understand me.  We clashed – frequently and loudly.  For many years, I believed that my mother was weak, and I found it difficult to respect most of the choices she made.  I suppose she knew this, deep down, and it pains me now to think that she did.  You see, I falsely believed for much of my life that my mother had imparted to me no valuable life lessons, no words of wisdom that I might apply during difficult times.  Indeed, she did not speak words of wisdom to me through her lips, but I realize now that she did so through her actions and with her very being.  What I once interpreted as weakness, I now know to be strength – the kind of strength that is often overlooked or dismissed.

One particular incident from my teenage years where my mother was openly and publicly mocked stands out to me to this very day.  My mother was overweight, obese, I suppose, and she frequently endured stares and whispers from many unkind souls when out in public, but on this particular day, the scoffers were a little more vocal.  Their comments were rude and loud, and they attracted the attention of other shoppers around us that day.  My mother ignored them, as she usually did, pretending not to notice or hear, and we went about our normal shopping.

I left that store wondering how my mother could possibly be so passive.  How could she stand by and say nothing in the face of such ignorance and evil?  How could she allow herself to be treated in this manner?  Did she have no self-respect?  Did she have no sense of justice?  I looked down upon her for failing to respond.  I felt a complete lack of respect.  I felt… forgive me… distaste for her. 

But I have since reflected upon that moment and others, and I have come to realize a couple of important truths.  My mother, far from being weak, demonstrated a significant tolerance for pain and bore burdens far greater than most will ever know.  She did not often stand up for herself in the manner that I would have wished her to do, but neither did she fail.  She endured.  She endured despite illness.  She endured despite cruelty and pain.  She endured despite what she must have known to be my lack of respect and admiration.  She picked herself up, found a way to get through, and she persevered.  Despite the vicious attacks and hurtful comments, despite the laughs and the scorn, she got up every day and lived her life.  She persisted.  She worked, took care of a family, and gave of herself to others in need in every way she knew to do.  She did not harbor resentment, nor anger, nor hatred for anyone. 

And there is another truth here.  It is one I have had to face about myself.  And it begins like this: Where was I that day?  What did I do to step up, to help?  I was upset, and I felt pity for her, but I did nothing.  I stood in silence as the incident unfolded.  I suppose I feared that if I spoke up, the mockers would intensify their attack on my mother or maybe even turn on me.  But in any case, I stood there silently and never even offered my mother a word of sympathy.  Her own daughter did nothing to protect her.  How must that have felt?  How much damage must I have, albeit unwittingly, done that day?

I wish I had defended my mother.  I wish I had confronted my mother’s bullies – not in any kind of hostile manner, but in a matter-of-fact, discussion kind of way.  I wish I had asked them why they felt the need to belittle another, what they thought gave them the right to treat an individual so unkindly, and why they felt so superior to their fellow human beings.  I wish I had told these wayward souls that their behavior was inappropriate and unacceptable.  I wish I had let them know that someone was willing to stand up and speak for those who, for whatever reasons, could not or would not stand up for themselves and confront their aggressors.  I wish I had done it because it was the right and moral thing to do.  But mostly, I wish I had done it so that my mother would have known that I cared and that I was not willing to let her suffer.

I realize now that human beings respond to adversity in many different ways.  We all do the very best we can to get through this life, to endure the inescapable pain and hardships that accompany it.  Our coping mechanisms take many different forms, and our paths vary, but, in the end, we are all struggling and simply fighting the best we know how to get through the tough times.  My mother taught me that.  And because of my experiences with her, because of that lesson imparted to me, my path today is quite different than what it might have been.

I see now that others matter, that their struggles are real, and that they cannot always take the path I take.  I understand that their reluctance to speak out is not necessarily weakness or fault.  I know that strength takes many forms and that they are exhibiting quiet strength – the kind that helps them survive in the face of devastation.  And I understand that I can be their voice.  I can do my part to challenge the “nastiness” and cruelty that abounds in this world.  I can act to stand up for others who lack a voice and/or the means and will to help themselves in this manner.  I can fight for those who are marginalized by society and who feel stigmatized or overlooked.  I can represent those who fear speaking up or are unsure how, and I can help them find a way to be heard – or I can speak for them. 

Before she died, my mother spent quite a bit of time on a ventilator, unable to communicate through speech for many months and then, finally, unable to respond at all.  Her voice was silent, but her fight to survive spoke volumes to me.  She battled to the end with a quiet strength, forged by years of torment and hardship.  Her fight and her death touched me in ways that I cannot quite express, and it has, at least in part, made me the person I am today.  I saw her in a different light at the end, and God, by His Grace, allowed me to understand that it is worth speaking up for those souls who remain silent and yet so desperately need a voice.

Rant

*Note: I wrote this specifically for my Gastroparesis support and advocacy groups a little while back, but I thought perhaps it would be worth sharing here.  I am grateful for so many in this community who have done their very best to support me -- but it is a difficult road sometimes and requires thicker skin than I sometimes have. I encourage you all to please step up and help those in our community rather than discouraging and demeaning their efforts. Here is my original post:

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Good Morning, my beautiful Gastroparesis community – and anyone else who might happen to be reading this!  Guess what?  I am wound up!  Yep!  And you know what that means.  It means I am going to rant.  So, prepare yourselves, and please scroll on by if you don’t want to “hear” it!

Do you know why I say “my” people, “my” groups, and “my” GP community?  It is not because I am on some power trip or because I think that I have some sort of leadership position here.  It is not because I am egotistical or seek control.  No!  Rather, I call you all “mine” because I am a part of you.  You all are my life.  I love you.  I love you all.  And I claim responsibility for you – every one of you.   Indeed, I have an obligation to you, and this means that I cannot step aside, avert my glance, and ignore your problems.  No, I do not forget you for a single second.  I share your disease, your pain, and your hopes, dreams, and prayers for a cure. 

A couple of years ago, as I began to realize the seriousness of this illness, as I started to see my friends suffer and die, and as I started to understand that this could be any one of us at any moment, I decided that I could no longer sit back and do nothing.  I grew weary of watching us all get pushed around by the very family members, friends, and doctors who were supposed to be helping.  I became appalled at the number of times those in our community were accused of lying and making up symptoms, just to get attention.  I got to the point where I simply could no longer tolerate a situation in which we are all treated like something less than human by medical professionals, where we have no effective treatments, and where our illness is ignored, mocked, and dismissed.  It gradually became clear to me that I could not sit by on the sidelines any longer and listen to the people who told me I could not make a difference.

Since then, I have spent every waking hour doing what I can to help this community.  And I mean that – every waking hour.  There is not a moment where you all are not in my thoughts, where I am not contemplating our situation, or where I am not evaluating tactics and seeking solutions for this community.  I know you all have heard and likely said, “I am not my disease.”  Well, I am here to tell you that I AM my disease.  It is a part of me, and I am a part of it.  I am chained to it, often controlled by it, and keenly aware that it is never going away.  It does define me – at least in large part – and I am not ashamed of that.  It has changed me, every part of me, and it has given me a purpose in life.  I detest it and would rid myself of it in an instant if I could, but at the same time, I owe it recognition for the way in which it has made me realize how precious life and all the struggling souls around me are. 

Today, and every day, I wake up, come to my computer, and do my best to serve this community.  I do it not because I want thanks, praise, accolades, notoriety, or money.  I do it not because I wish to feed my ego, make others look bad, or seek to outdo my “competition.”  I do it because I have no choice but to do it.  No one is going to wave a magic wand and rid us of this disease.  I love you, I share this devastating illness with you, and I want our circumstances to improve.  I want to live – and I want you all to live.  But moreover, I want us to thrive! 

For weeks now, I have written (as have others in our community) about unity and the need to set aside our differences and work together to accomplish our goals.  But despite these attempts, disputes and division abound.  I am no threat to anyone – just one individual trying to make a difference – and it seems to me like that effort, and all such efforts along these lines, ought to be welcomed and supported.  We should all be working together – individuals, organizations, and any other bodies interested in advocating for this GP community – instead of trying to sabotage the efforts of others and promote ourselves at the expense of this community.   If we do not find a way to act in unison and begin exercising the power we have as a group that is 5 million strong, we will never change our circumstances.  We will never free ourselves from the effects of this cruel disease.

So, I am once again begging you to stop this.  Get over whatever grievances you have.  We have more important matters at hand!  I do not care whether you love me or hate me.  I will work with absolutely anyone who wishes to advocate for this community, and I hope everyone out there understands this.  As I have said many times before, we are all flawed.  We are human beings who make mistakes and get off track.  But there is no reason we cannot overlook these shortcomings and disagreements, set them aside, and work together for the good of this community.  Check the egos at the door, stop the power trips, push your “pet” projects to the background, cease your self-congratulatory tone, and start working together to benefit this community rather than yourself, your group, or your organization.   Get past the mistakes, the disagreements, the anger, and the jealousy.  Stop gossiping, accusing, and stirring up trouble.  Forgive, move on, and focus on what is best for this community as a whole!

I refuse to give up or be silenced.  I will continue to write articles and blogs; ask you to share my posts and links; attend tweet chats, blabs, and webinars; plead with patient organizations to include us on their sites; contact our elected officials and government agencies, the media, insurance companies, the pharmaceutical industry, and medical players; beg the public to understand and support our initiatives; and seek the help of any other group or body that might be sympathetic to our plight.  And make no mistake, I WILL NOT STOP until I am dead.  I will not shut up until I have taken my last breath.  I refuse to go away because I am threatened, my account is hacked, or your lawyer sends me a cryptic message.

We are dying!  I am dying.  Help is not going to fall from the sky and no knight in shining armor is going to come and save us.  It is up to us – each of us – to find a way to be heard.  I am one person, a person whose life has been forever altered by a chronic illness, but I am not weak-willed or powerless.  Open your eyes! Lose the excuses!  Stand up, speak up, and help! If we do not get this right, if we allow our apathy and our disagreements to paralyze us into inaction, we will continue to suffer and die.  I, for one, am not willing to lie down and perish without putting up a fight and giving it all I have.  Please, do not let this opportunity pass you by.  Unite and help our GP community!