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by Jessica Jones
(Atlanta, GA)

I hate the words I'm, sorry, you, have, multiple and sclerosis.
I hate metal machines with loud banging and whirring that assault my hearing, already lessened by facial numbness.
I hate feeling trapped, breathing in stale air, flashing back, anxious about escape and the inability to protect, claustrophobic, singing old gospel songs in my head, praying for it to end.
I hate films that show more lesions, bright white and active.
I hate the inability to remember, process, concentrate, recall, focus, make good decisions.
I hate brain fog, second guessing myself, feeling incompetent, lessened.
I hate feeling stupid.
I hate that I can't guarantee my best work.
I hate syringes, alcohol pads and cotton balls.
I hate injection sites.
I hate the 5 seconds of pain, auto-injector in my right hand.
The same Monday.
Rotate sites.
I hate eyelashes that can't be felt.
I hate perms that burn because sensation is gone. I hate pain. Everywhere pain. Phantom pain. "I think she just wants attention" pain. Nothing can take away this pain pain.
I hate fatigue. Hate it.
I hate she's just being lazy' fatigue.
I hate fatigue that robs me of my time. Keeps me prisoner. Locked up in sheets and blankets. Renders me useless, unable to communicate with the world, with my husband, with my children until my body has been restored to 50%. Never 100%. Trapped in restless rest until MS decides it is done with me. For today.
I hate waking up and having to take inventory of my body. Fists clench. Unclench. Eyes flutter, sight is intact. Scared to greet the day, terrified that MS has absconded with my voice in the night. Toddling out of bed, hoping my legs will support me, at least until I get to my desk at work so no one will have to see me with my cane.
I hate scuffed toes of shoes, but only on the right side.
I hate being mocked by the cute heels in my closet that all 31 year olds wear. Not me. Too afraid of falling.
I hate hands that drop things. Hands that have no strength.
I hate legs that don't go. Legs that are indecisive, jumping, leaping and running without abandon one day, tripping, dragging and immobile the next.
I hate collapsible, blue, plastic canes that scream out 'she's defective'.
I hate motorized carts.
I hate handicapped stickers.
I hate being broken.
I hate being betrayed by a disloyal body. Et tu, Bruté?
I hate the uncertainty, the inability to plan for the future.
I hate not having anyone to relate to.
I hate sympathy.
I hate commiserating with others about it.
I hate empathy.
I hate having to acknowledge it.
I hate having to count freaking spoons.
I hate Multiple Sclerosis.
But, I love life. Guess it all evens out. Guess I'm more okay than not.
I guess.

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Mar 20, 2013
Thank you
by: Anonymous

I love this. It pretty much sums up any given day of anyone with ms. Thank you so much. It is nice to know that I am not the only one going through this. I mean I already know but to see someone else put it into words makes it real.

Mar 16, 2013
What can I say?
by: Mark

I have had MS for nearly 30 years now and although I could add a number of things to the list I think that you have done a wonderful job at putting words to say what I am sure so many of us feel.

Thank you


I am not scared of dying, it is life that scares the crap out of me!

Feb 08, 2013
wonderful poem
by: Anonymous

That was an amazing poem and it just touched me because I just spent the day in an MRI box. Thank you. I feel the same way. I was just diagnosed this year after many years of probably having MS but never being diagnosed. I hate the feeling of not being complete. Thank you for saying it how it is!

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