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!  

Empty Souls

Pour myself open,

When will it be enough?

Anguish and heartache,

Please, no more sips from this cup.

Death and suffering surround me,

I daily hear their cries.

I want so badly to help them,

But ill-equipped am I.

I thirst for justice and compassion

Relieve their misery, ease their pain,

But there are too few answers,

And so my efforts are often in vain.

I hunger for a future,

Where those around me are whole,

Where despair and hopelessness

Lose their bite or are no more.

But I face an uncertain future

Mere survival at best.

Should I then live for only me

And forget about all the rest?

This broken vessel, dry and empty,

longs to be full once again.

I need refreshing, a quenching,

For my thirst to reach its end.

I hear their desperate stories,

Cannot ignore their pleas,

But I, too, am tired,

For I, too, live with this disease.

You all who are out there,

Healthy, safe, and whole,

You who taste freedom,

On whom illness takes no toll,

Do you see our suffering?

Does it ever touch your empty souls?

Will you not open your hearts

And offer up your overflowing bowls?

We are starving for peace and healing,

For relief from all this pain,

And we would give almost anything

To savor one more “normal” day.

So I ask for your mercy,

Your understanding, your grace.

Help us satiate our hunger,

Please, don’t look the other way.

I’ve tried my best

And have given my all.

In the end, will it matter –

Or on deaf ears will it fall?

EVERY NOW AND THEN

Every now and then,

When I am all alone,

When silence fills the room,

And my time is all my own,

Memories of who I used to be

Flood my heart and mind,

Send a torturous, cruel reminder

That I miss the woman I left behind.

I think of all the plans she made,

Her goals, her hopes, her dreams,

And I ache for what I longed to be,

Not possible now it seems.

For then I thought that I had time,

An endless bright future ahead,

Boundless energy and hopeful spirit,

Life uncluttered and free from dread.

I never envisioned this unkind twist of fate,

The way the world would turn,

The toll this would take, the price it would demand,

That for my past I would forever yearn.

If I had understood the road ahead,

The burdensome future that lay in wait,

If I had known that time was short,

Different choices I might have made.

I might have tried to live my life

Minus the anxiety and grief,

Relished every moment, paused to appreciate,

Had I known time was such a thief.

Perhaps I would have danced and laughed

Without worrying what others thought,

Perchance I would have abandoned my fears,

Grasped the ring without regret or afterthought.

I am sure I would have forgiven more,

Showed compassion and affection without end.

I would have endeavored to understand,

To be a far better friend.

I am certain I would have made it known

To family and friends alike,

Just how much they mattered to me,

How they were cherished, how they filled my life.

But try as I might, I cannot go back,

Can’t erase the damage I’ve done,

Cannot replay the reel, rewind the tape,

No redeeming the woman who is gone.

I must leave it behind me and live in this moment,

Let go of who I was then,

Savor the present, embrace the now,

Recognize that I can begin again.

I miss the woman I left behind,

The one I now barely know,

The one that hoped, and dreamed, and wished,

That could not imagine how her future would go.

But she was not some virtuous soul,

Not one to be admired or praised.

Little profundity or wisdom dwelled in her,

A woman who made many mistakes.

And “then” was not such a perfect life,

Perhaps not as golden as it once did seem.

We gloss the flaws and blur the failings,

Romanticize and believe the dream.

I am not now what I was then,

But I was never meant to be.

I dwell on the past, count the losses and costs,

Ignore what should truly matter to me.

I grieve for the things I might have done,

Weep for chances lost,

But I can still embrace, treasure my life,

And become what I know I must.

For I cannot reclaim the time,

Can’t erase my bygone mistakes,

Cannot pretend that I do not now know,

Must resign to the path I’m required to take.

Yet my journey is not without all hope,

It is more than pain, anguish, and regret;

It is also a chance to flourish, to grow,

Overcome the despair, give back, repay my debt.

For I am wiser than the woman before,

And compassion once missing and hidden,

Now dominate my heart and soul, revealed,

Free to exercise what I had once forbidden.

I have learned to pause and behold,

Take a breath, delight in each second,

And I endeavor to love and accept,

Welcome every chance that I am given.

I have value, and I have worth,

I still have much to give,

Though my life won’t play out how I once thought,

How I then believed I would live.

So when I ponder every now and then,

When I am all alone,

When silence fills the room,

And my time is all my own,

I must learn to use the time

To tell myself new truths,

To cherish the blessings that I still have,

To rest, to thank, to begin anew.

And every now and then,

When I think about “now” and “then,”

I must forget the pain, loss, regret, 

And learn to live my life again.

Face in the Mirror

This face in the mirror,

Sullen and gaunt,

Like a stranger in the daylight,

And my dreams it does haunt.

Eyes peering back at me,

Sunken and dull,

Light that once danced there,

Dimmer than before.

Lips that once sang

And laughed without care,

Now silent and thin – bitter?

Sweet music no longer there.

This body is ravaged,

Battered, drained, and thin.

How do I reclaim the light

That once shined from within?

What I once was is gone,

Cruelly wrenched from my hands.

Of all the existences I imagined,

This was not in my plans.

I long for an answer,

To this bewildering twist of fate,

Search my troubled mind,

For a means of escape.

As I finish the day

And turn in for the night,

Try to find the courage

To make it to light.

Arise in the morning

And begin it all again,

Face the face in the mirror,

Days without end.

I question my purpose,

Do not like what I see,

And wonder what happened

To the person I used to be.

But there remains a flicker,

A glimmer of hope, far below,

In those strange sunken eyes,

Buried deep in my soul.

I cannot see a path out,

But I know there must be,

For I am Your creation,

And You watch over me.

You know the stranger,

And You guide her path,

You know her purpose,

Help her find her way back.

The face in the mirror,

Sad and forlorn,

Still has a connection

To the one she was before.

This new path is foreign,

And not one I wish to take,

But with the stranger before me,

Amends I must make.

For we have a purpose,

And You have a plan.

Though I cannot always grasp it,

I know my life is in Your hands.

So the face in the mirror

And the face I once knew,

Must find a means together

To begin each day anew.

We must pull ourselves up,

Blink back the tears,

Find a way to go on,

And face all our fears.

We are frail and uncertain,

This stranger and I,

But despite our misgivings,

We will fight to survive.

Please forgive me my failings,

My worries and doubts,

And help me find comfort,

Seek solace throughout.

For with Your great mercy,

With Your kind loving grace,

Though it may not be easy,

This life we embrace.