A THANKSGIVING NOTE

I do not often publicly share the aspects of my background which truly haunt me because, although the person I am today has been shaped and influenced by those past experiences (in some beneficial and some not-so-beneficial ways), I largely believe I am who I choose to be now, regardless of history and circumstance. For many reasons, which I cannot always bring myself to discuss, the holiday season is and always has been my least favorite time of year. Nevertheless, I am thankful for all I have been given.

My life has changed in unimaginable ways over the past few years, and I sometimes barely recognize the creature who stares back at me in the mirror -- one so physically worn and beaten, yet emotionally and spiritually worlds ahead of where she began. You cannot possibly know the person I used to be or the torturous personal journey and difficult paths I have traveled to arrive at this place of relative peace and joy, as I cannot truly know yours. By the Grace of God only do I survive each day.

I am a strong-willed, independent, driven, opinionated, oftentimes stubborn soul, who rarely seeks comfort or direction, and, as such, I frequently fail to adequately express my gratitude to all of you who have taken the time and put forth the effort to genuinely understand and care for me despite my sadly-lacking virtues. I am overwhelmingly thankful for my friends and family who support and love me through even my worst and most unyielding times; for those in this community and in my groups who generously and freely offer kindness, gentleness, and unconditional understanding; for those who endure my rants and listen to my musings, and who read and share my words when the mood strikes; for those who feel my pain right along with me and see past the hurt and anger spoken in my lowest moments; and for all those who listen, hear, accept, welcome, and truly appreciate my differences, flaws, and shortcomings.

I never forget you, not even for a moment. You are my entire life, everything I value, and I love you with all my heart. Despite everything you may be facing, I wish you peace, offer you my deepest and most heartfelt appreciation, and hope you have the best Thanksgiving possible!  

WHEN THE MUSIC STOPPED

*Note: I hesitated to share this poem because it is a bit dark. It was written at a time when I was not feeling especially hopeful. I still have those days now and again. I think we all must experience them at times. But, in the end, I decided it does no one any good to plaster on a smile, pretend the dark thoughts never come, and act as if only rainbows and sunshine grace our paths.

I do not believe in denying the negatives or suppressing my feelings; rather, I seek to expose and work through them. I think it would be misleading and harmful to present a facade and to act as if there are no hardships associated with chronic illnesses such as Gastroparesis. The "tyranny of positivity" is real to me, and I think it less than helpful. I prefer to deal honestly and openly with issues (even dark thoughts) and help people address them. I am not a walking ray of sun, but I am determined, self-confident, and capable, and I am quite certain I can and will survive and thrive regardless of circumstances and that others can, too. That is the basis of true empowerment -- not to have ignored your fears but to have faced them and to have managed to move forward.

I am in a different frame of mind these days, a state of peace, acceptance, and hope -- but it has been and still is a struggle to remain there. Though I once believed the music had died, I see now that was false thinking. I promise you, the music still plays. But you must be willing to uncover your ears and bend to hear it. Albeit distant and, at times, unfamiliar, it plays.*

WHEN THE MUSIC STOPPED

Roam these halls that music filled,

Empty now and hollow,

Chambers once so bright and gay,

Abound today with sorrow.

Long ago, sweet music played,

Wonderous familiar tunes,

Twirled and spun, my spirit free,

Laughter lit the room.

Danced and whirled the night away,

Light and unencumbered,

The beating of my heart kept pace,

Unaware those days were numbered.

Gloom and blackness nowhere near,

Thought the anthem would ever play,

The song untouched by grief and pain,

But, then, life got in the way.

All at once, the music changed,

Jarring – out of key,

The verses strange and unsettling,

The words unknown to me.

The notes began to rise and fall,

Disharmony louder and growing,

The crescendo reached its bitter peak,

With the discord overflowing.

A harsh cacophony of tribulations,

Pounded down my hallways,

Regret, remorse, trials, misfortune,

Marked the end of melodious days.

My mind confused, conflicted,

Piercing noise too much to bear,

The volume raucous, deafening,

Closed my eyes and covered my ears.

And then – the music stopped,

The clamor rang no more,

The din both brash and daunting,

Ceased its thunderous, roaring war.

No sound at all did reach me,

No whirling, twirling fests,

No beating joyful heart,

My dance steps out of step.

The song now dead and buried,

Dark and empty the rooms,

The ballroom full of sunshine,

Frozen – a lifeless tomb.

I long to hear the melodies,

Yearn for my soul to sing,

Even sad forgotten ballads,

What comfort they would bring.

At times, I catch a note or two,

A faint and far-off sound,

A haunting, calling, faded tune,

Wanting to be found.

Perhaps someday I’ll hear it clear,

And the concert will begin again,

The light and laughter and dancing,

Write the chorus and pen the refrain.

But this day it is merely fancy,

Lyrics hoped but yet unplayed,

A sorrowful, fleeting aria,

A verse adrift in better days.