als waning poem phoebe chiAll Poetry

The Waning (ALS)

By on • ( 98 Comments )

You already knew.
Gaze unflinching, 
you told us to say the words.

Amyotrophic lateral sclerosis

A. L. S.

Despite sparse questions,
your eyes revealed
an understanding far deeper
than our answers-
that with one moment,
robbed were you
of the years ahead,
of memories awaiting,
of stories belonging to you.
Now lost.

Strength dissolving,
your conviction remains
unscathed.
You savor
each passing sunrise.
Each caress, each step.
For you know.
As your legs cease to support,
arms stop to comply,
you still feel
your child’s touch.
Absorbing her love.
Pretending
you don’t care the roles
have been reversed
as you yearn
to return her embrace.

As its hunger ascends,
You treasure
the remaining days.
Every word, every smile.
For you know.
Soon it
consumes your voice,
drains your visage,
until all that is left is
the silence
of a vacant mask.
Unable to reflect
your thought’s grin,
your heart’s laugh,
your soul tears
as you blink away the moisture.

As your breaths
increasingly betray you,
you are not defeated,
for the flames
of your bruised spirit
are not quenched,
and you give thanks
for the time you had,
even as your body dims
and you fade away.

•

Phoebe Chi, MD
Phoebe Chi, MD

As a physician, clinical educator, and managing editor of PhoebeMD: Medicine + Poetry, Dr. Chi aims to inspire, educate, and empower the reader community. She is the author of Being Empowered for a Healthy Heart: A personal guide to taking control of your health while living with chronic conditions, a poetry-infused health guide, and founder of Pendants for a Cause, a nonprofit organization aimed toward helping others.

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Categories: All Poetry, Medical Poetry, Medicine, Poetry by Phoebe, Spoken Word Videos

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98 replies »

  5. Reblogged this on richwrapper and commented:
    Stunning. Phoebe Chi, “Puppy”Doc. Does Her Universe hold 96-hour days? Where does she find time to do all this? My advice: go to PuppyDoc blog and see what wonders occur. This one musing on A.L.S. is but on aspect of this many-attributed young lady.

    Reply

  6. I appreciate the thought placements and the harmony of the words and phrases you used to paint a picture of ALS’ toll on the human body. The disease is nasty. It is unkind. It has no sympathy.

    Reply

  9. Heartbreaking. The emotion you convey – comfort, sadness, celebrating life, savoring moments, facing more suffering. It’s a terrible disease. This is the first time I have watched you on video because I cannot always put my sound on when my husband is napping or sleeping. You feel what a patient’s experience deep inside.

    Reply

  10. I read the post but didn’t see the video, and since I m a crazy optimist…yo a hot in the video sista… anyways you always right good.
    Did you really read the last post I posted… doesn’t say much good thing about me would be my gues, execept now I m eating two burgers and is 1. 38 a.m

    Reply

  12. Beautifully said; I can almost envision this person. Bravely dealing. Handling a sentence, no jury gave, Yet, realizing the imprisonment. Wow.

    Reply

  23. Phoebe- I work in neurodegenerative disease research including ALS with MCI and ALS with FTD. Boy did this resonate. Posted on my personal Facebook page and shared with many of the clinicians, scientists and researchers that I work with. We know this story well.

    Reply

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