I still am
despite this
with this
fighting this
under this
molded
burned
touched
taught
humbled by this
uninvited illness
engraved upon my life
not yet named
not yet understood
I still am
here
loving
laughing
feeling
thinking
creating
dreaming
enduring
I still am
a soul born into an
awesome, mysterious
wonderful and sometimes
cruel and unjust world
Despite this
with this
under this
fighting this
humbled by this
I still am
and I will not
give up
by, Kerry Ryan-Kuhn (published in CFIDS Chronicle-Winter 2003)
It seems appropriate to rerun this poem after reading Zarla’s post today in her new blog, “Carrying Elephants”. She takes the reader through the actual experience of writing (and reading) with the cognitive challenges of a brain affected by ME/CFS. She expreses what it feels like physically, how long it can take to write, the hyperfocusing needed, and the energy expended.
Zarla has a great sense of a humor and a yurt in her backyard. (Yes, she has a yurt, one of those round tents you could live in if you wanted to). I share the yurt part to introduce you to Zarla (if you haven’t met her already). She is one of a kind, a whole lot of fun to hang out with, and an awesome friend. Isn’t “Carrying Elephants” the perfect name for a blog that spreads awareness of life with ME/CFS? The profound exhaustion of this illness often feels like we are “carrying elephants” across miles of desert.
I wrote this poem below on a day when my brain was not working for me. I hope in its own silly way, (I was in quite the silly mood when I wrote it), it might also bring awareness to what it feels like to think through a cognitively affected, soggy, foggy, blurry, “where in the heck is the word I need”, “what in the heck train was I on”, often stop working right after its been used… brain. For me, writing this poem helped me accept my own new cognitive challenges.
Fluff Between the Ears
by, Kerry Ryan-Kuhn
Pooh Bear has found me
Came knocking at my door,
Under the pretense of craving honey,
But I suspect there is more.
Perhaps he heard that I, too,
Have become of little brain,
And fluff between my ears
Is all that remains.
Between spoonfuls of honey
He offers me a hum or two,
And tells me that hums and poems
“Have to find you.”
And now finding myself
A poet left with little brain,
I wonder if in the fluff
The poetry remains.
For if poems and hums find Pooh–
And Pooh found me,
I might stop pining for my brain,
And let the fluff be.
I wrote this little poem years ago, on a day when losses felt overwhelming and keeping “me” in the midst of it felt daunting. Still I have days I feel that way. Today is one.
Fading
(by, Kerry Ryan-Kuhn)
Fading like a favorite t-shirt
Washed a hundred times
Like a purple sunset sinking
into night
The palette that once colored me
I fear…is fading to invisibility
The sky is grey today and the temperature is cold. I waited too long to fill a rx and am filling the side effects of suddenly dropping the dosage. My daughter had oral surgery and could sure use my “comforting mom” care. My challenge to give it this week shines light on the reality of where my limitations have slipped to. My stomach is bloated from Gastroparesis and Interstitial Cystitis, which are both acting up. This makes me feel extra fat. It is the week before that time of month (another feel “fat” factor). Estrogen is flowing through me and irritating my neurological system which is already irritated because it is broken. Okay, that’s enough of a complaint list!
A dozen years ago, when I could still play the guitar, sing and write songs, I wrote a song called “It’s a Blue, Grey, Lavender Day”. Today’s a blue, gray, lavender day…
We live the entire color wheel don’t we? Separately I like the three colors above, but somehow together they express this melancholy feeling. I like being at “green”, learning, growing and in the midst of nature, or “deep blue”. It is my favorite color. Blue to me is tranquil, soothing, and accepting. I also like orange…which I think is funny and giggly… the result of belly laughter and being wrapped up in a favorite blanket, or the arms of someone who loves you.
There is power in color. My daughter is taking a university course called “Art and Politics”. I asked her if it was about how the politics of an era effects the art of that era. She told me no, its the opposite. Its how the art of an era influences politics. I know it seems I’m going off on a tangent, but color is such a part of art. If art has the power to greatly influence politics and color is a major part of art, color has quite a bit of power. Right now, contemplating a new idea feels “green” which makes me feel good. (I realize I’ve been smiling while thinking about this). Perhaps I started feeling “green” first and that’s what started my contemplating.
Either way, “green” feels good.
