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.
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