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As part of my series for MG Awareness Month, I am sharing a variety of personal stories.  The following was written, May 21st, 2012 by Jeremy D. Ellis. The poem is about his mother Kelly Ramos. Jeremy is 15 years old. His mother, Kelly, was diagnosed with MG in December of 2006.

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Kelly Ramos and her son, Jeremy Ellis.

Myasthenia Gravis
by Jeremy D. Ellis

There is a disease inside of her,
It renders her weak.
Takes away all of her physical strength.
… No active behavior.
Just sitting. Sitting.
She looks out the window,
She sees her kids play.
She sees the neighbors riding bikes.
She sees her husband work.
She says “Why can’t that be me?”
Sitting.
She wants to get up,
She wants to run and be free.
Free from this disease.
Free from this curse.
She tries to stand up,
It’s a struggle, but she eventually does.
She struggles her way out the door.
“WHY IS THIS SO HARD?” She screams.
She finds the strength to make it to the bench
and collapses on it.
She’s lost her breath.
She chokes and tries to breathe again.
She’s too weak.
Inhale. exhale. Inhale. Exhale.
“Why can’t it be that easy?
When is anything in life Easy?
Why Can’t it be?”
Nostalgia hits and she thinks.
She remembers a better time.
A time when she was active.
She was athletic.
She could run,
And jump,
And simply walk from room to room.
She could do so many things that she just can’t anymore.
Tears streak her face and she’s finally breathing.
She’s exhausted.
Physically and mentally.This is all too much.
It’s weakening on her soul.
She needs something strong to hold on to.
She reads her Bible.
She prays.
She asks God “Why?”
She reads the Bible some more.
She asks “Why?” again.
She goes to church.
She builds her faith.
This life is a test.
Now she knows why.

Kelly & Jeremy

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Thank you so much, Jeremy and Kelly, for giving me permission to share this heartfelt poem to help raise awareness about Myasthenia Gravis.