Thursday, August 31, 2017

In Stillness

You may be wondering why I haven't written a blog post in a year. There's a long, complicated answer but in short I've been bedridden the last year. The day of my last post was actually the first day it started. I finally started aggressive treatment for Myasthenia Gravis last September but that treatment made me sicker than I've ever been. I am doing better than I was six months ago but I haven't been able to fully recover and leave my bed for good. I'm not sure what's going on and neither do my doctors. It's a long story and someday I will have more strength to discuss everything that has happened. It's another link in the long narrative of "Inexplicable Things My Body Does No One Can Explain". In the meantime, here's a poem I wrote in my journal a few weeks ago:

"In Stillness"

In the stillness I exist
Not in motion
Motion is still
Where life is slowly
Tubes hanging from my face
A machine breathing for me
Pulling life in and out
In stillness
A portrait of a woman frozen in time
As fibers inside bend and break
With the turning of the world
Still. I am still
Waiting for a tomorrow
Dreaming of a yesterday
To be in motion once again
To feel the spinning
Like laughing on a carnival ride
As lights burst all around
In the candied popcorn air
Only stillness now
But in stillness I am strong
In stillness I can fight
I gather knowledge
I smell of lavender and stale air
Green tea and vomit
Salt and ginger
In stillness I survive
In stillness I fight on
Faster than any beating heart
Spinning outside

Me, Mopar, BiPAP, in stillness


  1. Beautiful work, my friend.

    I just spent over 24 hours lying in beds in the ER/hospital due to a kidney stone. When I got home, it felt SO good to just be able to move around the house again. It made me think of you. The little things we take for granted when we are well or even just semi-well, no?

    I can especially relate to this phrase: "Inexplicable Things My Body Does No One Can Explain." Story of my life, too, right there.

    And I especially love this line from your poem: "A portrait of a woman frozen in time."

    Good for you for summoning the energy to express yourself creatively in spite of the challenges life keeps throwing your way. I continue to cheer you on.

    Much Love,


  2. A wonderful achievement bless you !
    I particularly love the final ten lines about STILLNESS. ❤️����☘️

  3. I'm sorry I did not see this post when you posted it in August. (I've been struggling with my illness this year and it has been a challenge to keep up with blog reading or anything that *I* would *choose* to do - as opposed to all the things I *need* to do.)

    I like that your poem does not shirk from reality one bit. The good and the bad. It's like a strange life in limbo to be bedridden for a long time.

    I hope that you will be able to make some of those 'inexplicable things' explicable in the near future. With all the new and exciting developments in many fields of medical research lately, let's hope that they might allow the doctors to pinpoint precisely the kind of MG that you have going on - who knows, there may be sub-types that they are suspicious about but can't quite see...yet...and that they might see ...soon? (Like the discoveries of the planets perhaps).
    Sending hope and hugs x

  4. Beautiful poem about stillness, I guess this is about mindfulness and present moment awareness.I am a huge fan of Eckhart Tolle and try to be aware of the present moment, it is so relaxing and peaceful.


Comments are much appreciated!