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.

Shadows of My Former Life

Shadows of my former life,

Where I sometimes long to be,

Remnants of another world,

Slowly fading from my memory,

Live in the darkness,

Not wanting to be seen,

Days gone by, ancient times,

Hidden, snatched away, stolen silently.

A passing dream – or was it real?

Seems so distant, far away.

Is this my life?  Am I the same?

No, forever changed, a different day.

Tattered, torn,

Broken open to the core,

Stripped bare, tossed aside,

How can I possibly endure more?

Misery, yearning,

A longing to be free,

Struggle, heartache,

Feel it overtaking me.

A whirlpool, raging,

Swirling all around,

Engulfs, swallows,

Forces me down.

Sinking, drowning,

In the dark, black sea of despair,

Battling, thrashing,

Gasping for air.

Hope, light,

All blocked from my view,

Striving, seeking,

Aching to be renewed.

Frightened, weeping,

Fighting back a scream,

Then a flicker, a glimmer, a notion,

Things are not what they seem.

Deep in the abyss,

A faint light beckons me.

I call out, cry for mercy,

Is this what’s meant to be?

Pleading, beseeching,

My life is in Your hands.

Shadow, light,

It is all within Your plans.

Compassion, forgiveness,

And the waves begin to rest,

Tranquil, serene,

No anger in the crests.

My heart tears open,

My outstretched arms summon You.

Peace, comfort,

My soul content to start anew.

You calm my fears,

And ease my soul,

Supply a path, direction,

When I am sure I can bear no more.

You offer hope,

Where I see none,

And You reminded me,

That we are not yet done.

True Love... and Chronic Illness

This Valentine’s Day, I am feeling sentimental, and I find my thoughts turning to notions of what it means to truly love someone.  It occurs to me that many people doubt their relationships because they have not been showered with bouquets of flowers, boxes of candy, and expensive gifts.  They fret because they have not been invited out to a pricey restaurant or been summoned to some lavish gala.  They lament the fact that they have not received that one special romantic card that sums up their unfathomable love in a few poetic sentences. 

But while all of these (missing) tokens of affection are splendid and can make a person feel quite special, it seems to me that love might be a little something different than all of this – something more.  Perhaps love is not about the hearts, candy, flowers, gifts, and festivities surrounding a certain day of the year.  Perhaps, instead, it is this…

·         It is my friends who call, play online games with me (like my sisters and cousin who play Scrabble with me, even though they know they will never win – and yes, that is a joke), comment on my posts, share coffee memes, write notes for no particular reason, and tell me every day that I matter and that the things I do make a difference in their lives and the lives of others. 

·         It is my neighbors who cook dinner and make treats for my family because I am too sick and too tired to provide this.  It is my neighbor who plants flowers for me and fails to take credit for this or even so much as mention it.  It is that same neighbor who delivers homemade hard candies for Christmas because she knows they are one of the few treats I can still enjoy without pain.  It is my neighbor who takes my child swimming because I can no longer get her to the pool.

·         It is my father and stepmother who stay away and do not come to visit, even though they want to see me, because I find it too difficult to entertain visitors these days.  It is their efforts to support me from afar in the ways I ask rather than in the ways they think support should be offered.  It is the sacrifice they make financially to help me with my ever-mounting medical bills.  It is their willingness to travel to see their grandchild because I cannot bring her to them.  It is the message my dad leaves on my answering machine: “I know you don’t feel like talking, but I wanted you to know that I love you, and I am praying for you.  I pray for you all the time.” 

·         It is my sister-in-law who picks up my child from school on the days my husband cannot, because she knows it will be a significant burden on me to get to the school in the late afternoon when I am generally feeling my worst.  It is that same sister-in-law who stays for my child’s birthday party when I cannot attend and helps serve the children there, monitor their activities, and clean up afterward.  It is her thoughtfulness when she takes picture and videos at such events so that I can see what I would otherwise have missed.

·         It is my sister and brother-in-law who sit out in the rain at a concert in which they have little interest so that I can enjoy a very rare evening out.  It is that same couple who travel over an hour, pick me up to take me to that concert because I cannot safely drive, and who then try to refrain from eating dinner in front of me because they do not want to hurt me by consuming foods that I can longer have.  It is their attempts to make every moment I am out feel like the best moment in the world, to treat me as if I am the center of attention and the most significant person in the room.  It is their focus on meeting my needs, making me comfortable, and pushing aside their own desires to accommodate my wishes.  It is their willingness to spend far too much money, money they could have used for events of their own choosing, on overpriced tickets – and their willingness to then leave that high-priced concert at the drop of a hat, without even a moment’s hesitation, should I start to feel bad.  It is my best friend offering up his motorcycle so that I can arrive “in style” at that concert.

·         It is my 12-year-old daughter who sacrifices so much and rarely complains, though I know it must break her heart to give up the many “little things” other children take for granted.  It is her graceful and compassionate response when she hears that I will miss yet another choir performance, play, Tae Kwon Do tournament, or birthday party: “It’s okay, Mommy.  You can’t help it if you are sick.”  It is hearing her exuberantly tell her aunt, “Today was such a good day!  Mommy took me shopping and we were able to stay out a whole two hours!”  It is feeling her little hand caressing my back and hearing her soothing voice tell me she hopes this is a good day for me. It is this child holding her tongue when I am screaming at her for no reason at all other than my pain getting the best of me.  It is this beautiful, precious little being patiently explaining to teachers, friends, and everyone else who will listen that her mother has gastroparesis and this means that her mother cannot eat normally or do the things that many parents do.  It is my child participating in every “Go Green” event and campaign we hold – and doing so with enthusiasm.  It is hearing her pray for healing and comfort for me and for all of those in my GP community every single night without fail.  It is her holding me in high esteem despite my many shortcomings.

·         It is my husband who has not left me despite the truly horrendous trials I have put him through.  It is him rising every day, performing the household chores that I can no longer complete, taking care of our child’s many needs, acting as chauffeur, maid, butler and general caretaker.  It is him shopping at an ungodly number of stores, trying to find that one perfect, organic, gluten-free, non-GMO food that I am just sure I will be able to eat this time, and then watching silently when I throw it across the room in frustration.  It is him tolerating the days when I decide that “I am not going to eat or drink another thing because it only prolongs my agony,” and knowing that I do not really mean this.  It is him telling me that I am beautiful, though anyone can clearly see the truth in the dark circles under my eyes and in the skeletal reflection in my mirror.  It is his willingness to listen to endless rants about incompetent doctors, the “evil” politicians and media members who will not help us, the lack of research and treatments, and the details of the many projects I want to undertake for my GP community.  It is him patiently enduring my screaming fits of anger and apologizing even when he has done nothing wrong.  It is him holding onto me when I am crying and on the verge of throwing in the towel, despite the fact that I have likely just scolded him, pushed him away, and blamed him for every horrible thing that has ever happened to me.  It is him understanding that pain and lack of nutrition make me crazy and irrational.  It is him believing that I love him even when I tell him that I despise the world and everything in it – including him.  It is him accompanying me to every doctor’s appointment so that they might take my illness (and my description of its effects) seriously.  It is him rubbing my shoulders and feet at the end of a long day’s work, despite his own fatigue, so that I can relax and sleep well.  It is him whispering to our child in the other room, “You have to try to understand and forgive Mommy.  She’s just tired and sick.  She doesn’t mean it.”  It is him praying with our child for my healing, strength, and peace.  It is his never-wavering confidence that we can continue to get up every morning and do what is necessary to get through the day.

There may have been a time when I placed great value on a day – on the gifts I received on that day – but that time has long since passed.  Love is not based on seemingly romantic gestures, gifts, and evenings out.  It is the day to day thoughtfulness one displays and the commitment to enduring anything life throws your way.  It is standing by each other, offering support and comfort in difficult times, and placing the wants and needs of your loved one before your own.  I am eternally grateful for the love I am shown by those around me on a daily basis.  This Valentine’s Day, I want you all to know how much I love you, too.

My Deceitful Lover

February 14, Valentine’s Day, the day for lovers, marks my second anniversary with gastroparesis.  But this has been no great love affair, and there will be no celebration of fond emotions.  Gastroparesis is a jealous and demanding paramour.  It aspires to rule my life and desires my complete time, attention, and devotion.  It relentlessly pursues me and seeks to control my every thought, emotion, and action.  It wants to own me, and it cares nothing for my wants, needs, plans, dreams, and goals.  It is heartless, merciless, and cold.  It knows nothing but pain and misery, and it will overtake me in an instant if I allow it.

I did not always know this about my constant companion.  It can be deceptive.  At times, it whispers to me, and I scarcely know it is there.  I convince myself for a moment that it might release me – and I believe its lies when it says we can coexist in peace.  But it tricks me.  It offers only short reprieves from the hunger and pain.  It taunts me with the promise of a normal life only to snatch it away when I least expect it.  It keeps me guessing, off guard, unsure of myself and my abilities.  It laughs at my plans and mocks me when I speak of my dreams of a beautiful, serene future.

It imprisons me in my own home and separates me from the ones I truly love.  I do my best to appease it, to do its bidding.  I obey its harsh demands.  But it is never enough to soothe the beast.  It will not let go of its death grip, and it refuses to let me be.  It tells me no one else could ever love me, that I am not worthy of others in my weakened and humbled state.  It hints that, indeed, my former loves have already left me.  “Are they here with you?” it mocks.  “Do they still seek your company?”  And I must pause – and contemplate.   

It hurls insults about my appearance and reminds me that I am grotesque, persuades me that I belong in the shadows.  And then, in a soft voice, it beckons me to those shadows.  It welcomes me to remain in its world, where there is no judgment and no expectation of greatness.  It caresses me with its offer of acceptance.  It beseeches me to look no further and admonishes me to spurn all other suitors.  It embraces me, and for brief moments, I want to remain.  I want to cease the fight within my soul and give in to the dark promises it offers.  It tempts me.

But deep in my heart, in my barest soul, I know the illusive nature of this monster that resides with me, in me.  In truth, it endeavors only to harm, isolate, create doubt, fear, and hopelessness.  It seeks to devour me – heart, mind, body, and soul.  It hides its true nature and disguises its malevolent intentions.  And if I allow it, it will crush me, break my spirit, and enslave me forever.  Gastroparesis, and the world it offers me, is not my true and intended lover, not my future, not my destiny.  I share with it this anniversary, but it is not my eternal fate.  I am physically bound to the beast, but it cannot possess me without my consent.  Something better awaits, and I must never forget that my truest passion, my genuine love still calls for me, longs for me. 

Hope

Hope

I taunt myself sometimes,

With the hope that I could have a normal life.

Dress up, go out, converse, fake a smile,

Shatters, crumbles around me, no longer meant to be.

In the deepest recesses of my haunted mind,

There's a dream, a longing, that is still alive.

But it is much fainter, much paler, than in days before,

Will it continue to dim, til it is no more?

Surely something better waits for me,

The object of my yearning, that's alive in my dream.

At times, I reach to grasp it, often timidly,

Beyond my boundaries, but perhaps soon won't be.

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

I live with a chronic illness called "Gastroparesis." It is basically paralysis of the stomach, and it means that I cannot eat normally. Many in my community can no longer eat at all. "GP" 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.  This food is then emptied into the small intestine and passes through the digestive system.  

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 those afflicted to experience debilitating 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, bezoars, and overwhelming fatigue.  

Gastroparesis can result in severe malnutrition, weight loss, extreme stomach and abdominal pain, and a whole host of other symptoms. It can be a difficult illness to manage. There is no cure, and there are very few reliable, effective treatments.  The treatments that are available to us come with serious risks and side effects and are often not covered by insurance.

We fight to survive, to keep hope alive, and to have some semblance of a "normal" life. This is the only poem I have ever written, so please forgive me if it is a bit "rough around the edges."