LEMON-AIDE

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.

Sweet Darkness

by, David Whyte

When your eyes are tired,

the world is tired also.

When your vision is gone,

no part of the world can find you.

Time to go into the dark

where the night has eyes

to recognize its own.

There you can be sure

you are not beyond love.

The dark will be your womb

tonight.

The night will give you a horizon

further than you can see.

You must learn one thing.

The world was made to be free in.

Give up all the other worlds

except the one to which you belong.

Sometimes it takes darkness and the sweet

confinement of your aloneness

to learn

anything or anyone

that does not bring you alive

is too small for you.

Silence

Lying here
Still
Silence swaddled

The moment
Swells
Silence births

An Internal Universe

by,  Kerry Ryan-Kuhn

Pieces of the Day
Kerry Ryan-Kuhn

Tonight I hope to lay dinner on the table

Take a seat around it with my people

Share chicken-broccoli casserole

And pieces of the day

I sigh though at the knowing

That my body might stop

As it often does in the early eves

And an apology in the air

I will drop on my bed

Pull my aged soft quilt

Warm around my neck

Between the kitchen and my room

They will remind me, again

That I am blessed

Not with the best of health…

But with the best of life…

I wrote this poem a few years back when at least two of our kids were living at home and our oldest came home often for dinner. It is quieter now–when I have to retreat from dinner, it is just my youngest daughter and husband’s voices that lull me…

Hmmm…what shall I do next year when she’s off to college and I need to leave my hubby alone at the dinner table?  Don’t think he’d be keen on the idea of holding a conversation aloud with himself (wink).   

In a few months we will have our first grandbaby. I know there will be plenty of evenings when the sounds of her babbles float and her cries rush to my room.    

Silence too is beautiful when surrendered to.  I wonder what else I will hear and come to love as the season’s of life change?… as this teacher, that this pain in the behind illness manages to be, continues her lessons of how to find beauty and comfort within the state of “being”. 

What sounds soothe you when all you can do is lay down and “be”? 

     Profoundly beautiful is this visualization of a poem written by Laurel B.  Laurel has ME/CFS.  She shared this poem with her blog readers, one who was so moved by it, she set it to music and pictures and posted it on YouTube.  To experience this work of art and expression of the reality of living with ME/CFS…visit Laurel’s blog, Dreams at Stake. 

Dance You
by, Kerry Ryan-Kuhn

Dance you, whether you’re a waltz or a hip-hop

a salsa, a ballet,

or a simple subtle sway

Don’t waste a beat wondering if your dancing good

if she’s dancing better

if he’s dancing worse

Don’t waste a step worrying if someone’s watching

if someone’s judging

if someone’s laughing

Dance, as if there’s only one you

as if there’s only one turn

to dance yourself…across the Earth

Living with illness teaches me to listen. It requires the hushing of “doing” and accepting the quiet of “being”.  I have learned to listen more closely not only to the voices of others, but to the whisper of my heart and most of all to that which speaks infinite wisdom without saying a word…silence.

Is My Soul Asleep
By, Antonio Machado

Just in time for Valentines Day…

Love on a broad scale is being expressed by two women, Julie and Ramona, who decided to put the word out online that they wanted to collect works of artists and poets with the theme of “love” then donate the proceeds to those who are struggling through our economic crisis. 

The ”Love E-book” is now a reality.  To share in this artistic work of love and at the same time help those in economic need, download the book from Julie’s web-site, Writing Roads. 

Celia Nunnelly has a gift for expressing emotions through her words.  Living daily with disabling chronic illness, her poetry touches the heart of the chronic illness experience.  The following paragraph is Celia’s introduction to her poem.

This poem is patterned after Asian forms, similar to Haiku. I remember that I was reading about early 20th century Philipine immigrants to the U.S. when I wrote it. And about how they would often write short sad verses about how hard it was to be in a strange land. Something in those verses struck a chord with me. It was written right after I had realized that I was probably never going to be able to go back to a regular job and also was realizing how many other things that I was no longer able to do. Like most Asian form poetry, it has no title.

*************************************

hope failing me
desperation knocking at my heart
I weep for my youth

This poem I wrote awhile back for my hubby, who is my BF, my love and my caregiver…who just keeps on a caring.  I’m one lucky, blessed, fortunate lady.  If one has to be chronically ill, having a partner, with the virtue of perserverance, makes the ride a whole lot easier, a whole lot less lonely and a whole lot more fun!  

YOUR PERSEVERANCE
by, Kerry Ryan-Kuhn

You never give up on a toaster or a car engine;
You start out thinking you can fix it quick.
But it takes you hours, days even.
You stick to it, you persevere
Until the toaster toasts,
Until the car engine purrs.

Now, here you are working on broken me
Not giving up after months turned
Into this stack of years–
Taking me from doc shop to doc shop
Reading manuals, looking
For just the right tool.

I still don’t work right, but I’m not dead either;
Until I am, I know you will keep on trying.
I also think I know how those toasters
And engines would feel if they were able–
Grateful, yes, most grateful to be
Objects of your perseverance.

Here’s a “rerun” of a poem of mine which I posted months ago.  It seems appropriate as my brain this past week is stuffed with so much CFS/FMS “fluff”, I’m surprised it isn’t coming out my ears.  Maybe if it was, I could pull some out and find my brain!

A Hum or Two

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.

 This little poem came to me after working with my youngest daughter on an English project about AA Milne’s’, The World of Pooh.  After I reread the book, I felt a bond with Pooh Bear, who talks of the “fluff between his ears” and being “a bear of little brain.”  Through Winnie the Pooh, AA Milne demonstrates (without intending to) the cognitive struggles that often accompany neurological illness. 

Unlike most of us humans struggling with cognitive challenges, Pooh accepts himself with humor and never a judgment.  He likes who he is; “fluff between the ears” and all. He doesn’t let it stop him from hunting a Hefalump with Piglet, mooching honey off of Rabbit or cheering up Eeyore with a birthday present of a honey pot with a well-intended message misspelled beyond reading. 

In the non-fiction world we live in, it isn’t easy being a human with a once reliable brain that is taken under siege by illness or injury. Simple words often can’t be found or the wrong word springs from one’s mouth instead, e.g. “Can you get the plates out of the computer please,”  and “don’t forget to turn off the cupboard!” 

Thinking, …oh boy what a feat thinking can be…to string sentences into meaning…the mental exertion can be truly exhausting.  Memory is effected. What day is it?  What month is it?  Geez, sometimes even what year is it!  Notes to oneself and lists become essential coping mechanisms.

When I hit the cognitive blips that I do countless times each day, I can feel frustrated and embarrassed. Sometimes though, I think of Winnie the Pooh who reminds me to lighten up, and laugh at my silly self.

I wrote this poem this morning while lying on my just made bed, under my daytime blankets.  Days like today when my brain is full of whatever it is that inflames it, when I can do little but rest, when even reading is difficult, sometimes I can write a poem.   

Words when they come always surprise me, much like a gift left by a friend outside the front door.  The day, whose contents I perceived as unwelcome (hours spent with cable news, my thoughts and a few strong shots of boredom) become less so. Sometimes even, I wonder if this state of “bed-boundness”… perhaps, maybe, might even be… a small gift.  For if life held what I expected, strings of active days, would I stop long enough to pull up a blank screen, look out the window, and see what is there?

 The Blue Fedora
by, Kerry Ryan-Kuhn

The man
In the blue fedora
Walks behind our fence
Each morning

The fence
We built with planks
Nailed an inch a part
To see through

His hands
He tucks in the pockets
Of a short wool coat
He looks

At the ground
Perhaps he knows
I see him
He doesn’t

Look
Towards the house
Towards the window
Where I

Watch him
From my bed
under day blankets
Glad

To follow
The blue fedora
As it slowly
Sails

Over our fence
His morning routine
I welcome like
Sweet coffee

I stay here
But feel a nomad
Who wanders far
Solo

Turns ‘round
A bend and sees
Another not unlike
Myself

The other
Evaporates my illusions
As steam escapes my coffee
Alone?

Am I? Is he in the blue fedora?

On Friday’s I like to share a poem or a quote.   I try to listen for the right one, if there is such a thing.  What I think I choose is one that happens to move me in relation to the week just lived and sometimes simply to the moment when I set out to find it, in hopes that it will find me.

This week has been extraordinary as our country elected Barack Obama our first African American president, judging him in the words of Martin Luther King Jr. “…not by the color of his skin, but by the content of his character”. 

I cried Tuesday night, along with the men and women who brought us the election results through our television screens, whose emotions exploded with such unexpected power it blew off their journalistic masks. My tears joined those of the 250,000 people gathered in Grant Park to celebrate and listen to President Elect Barack Obama’s acceptance speech.

What we did Tuesday as Americans, as human beings, is beyond the limits of my vocabulary.  In the tears of Tuesday, in the profound silence, in the ecstatic shouts and dancing, I wonder if we came to know, whether consciously or sub-consciously, that though it might take centuries, unfathomable heroics and unimaginable suffering, we can get There.  There, where the best of us blooms and the worst of us shrivels.

I have not walked in African American shoes, yet their arrival filled me with a certainty, filled me with faith that the small slow steps I take in my own little life matter.  The tiny steps that I have judged countless times to be insignificant are not so. The steps we each take, bring us closer to the justice we seek and lessens the distance those who follow us must travel.

There are many Theres to arrive at, many whose just treatment as human beings has not been reached.  Tuesday, it felt to me as though the American soul was touched with the truth, that good can overcome evil, that justice is worth fighting for no matter how long or hard the fight. 

All of us who see our Theres dauntingly far off in the distance…if we keep stepping, no matter how small our feet…we too will get There.

I started writing this piece about how on Fridays, I look for a poem or quote and hope it will find me.  I think one has…

This week was poetry. 

Ghalib writes of rain and weather as metaphors for experiencing and accepting life fully; for the pain that often must be endured to do so.  I wrote my most recent post about changing weather worsening chronic illness/pain; finding this poem today feels like a gift in timing.

Ghalib’s rain drop experiences unbearable pain in order to become the river.  As drops of rain fall on the fire-red Japanese maple leaves outside our living room window, I can’t help but smile and see them (and my own weather- flared physical pain) through Ghalib’s wise poetic eyes.

For the Raindrop
by, Ghalib

For the raindrop-joy is in entering the river—
Unbearable pain becomes it’s own cure.

Travel far enough into sorrow, tears turn to sighing;
In this way we learn how water can die into air.

When, after heavy rain, the stormclouds disperse,
Is it not that they’ve wept themselves clear to the end?

If you want to know a miracle, how wind can polish a mirror,
Look: the shiney glass grows green in spring.

It’s the roses unfolding, Ghalib, that creates the desire to see—
In every color and circumstance, may the eyes be open for what comes.

*Ghalib was a 19th century Persian poet.

Here is a poem by Mattie J T Stepanek whose life was short, but whose words, wisdom and passion for life are timeless.  Seems Mattie could have written this poem to give us perspective (as well as warm our hearts) during these changing economic times.  Enjoy.

On Being Rich
By, Mattie J T Stepanek

I used to think
That being rich
Meant…
Having lots and
LOTS of money
And getting
And doing
Everything
You want.
But I was wrong.
Now I know
That being rich
Means…
Having lots and
LOTS of love,
Honesty,
Respect,
And friends.
So no matter
How poor
Or wealthy
You may be,
It is always
Friends and
Gifts of the heart
That really count.

From his book,  Loving Through Heartsongs

What a week!   Last night as I watched the Vice Presidential Debate I realized I was unwrapping and eating an awful lot of coffee candies. (Hard candies that normally last a good fifteen minutes, I was chewing them in three).   The debate ended.  I paced the living room floor and yelled to my hubby that I needed to go for a “wheelchair walk”.  (I push the wheelchair as far as I can.  When my body gives out I get in the chair and my husband gets a work out.) 

We walked and talked.  Walks, I always find therapeutic whether on my own two feet or by the grace of my husband’s.  The fresh air, movement, the conversation sorts out what needs to be.  By the end of our walk last night, I came to a personal awareness –I was ANXIOUS– anxious in caps. 

What a week for all of us in the US of A.  For me my anxiety was already stirring with my daughter newly far away at school.  We said good-bye to her less than a week before MONDAY.   I wonder if we will give a historical name to Mon. Sept. 29th, —the day the stock market plummeted 777 points, and the fact that our banks were failing fast blasted from our tv’s, our radios, our newspapers.  “Credit freeze”,  “Worst drop in the stock market since the Depression”.  Each of us had our own worries depending on how the state of our economy would effect us and ours, as well as a collective worry about how the state of our economy would effect our country’s future and the rest of the world.

Yesterday I learned other news that will change daily life a bit and require adjustments.  What a week!  I’m reaching into my “deal with anxiety tool chest”.  Earlier this morning I did some gentle yoga, focusing on breathing deeply and slowly.

I am sticking militantly as physically possible to my daily routine.  For me this means, taking my morning meds, getting dressed in “day” clothes (showering first when I’m physically able), making our bed, spending time on the computer ( right now), next step will be drinking my supplement smoothy for breakfast.  I will not bore you with the rest. Routine, some of us need more of it than others; I’m one that needs more.

I’m reminding myself to “be”, which  means with whatever I’m feeling “now”—whether it’s ANXIETY, fear, contentment, affection, physical pain, cognitive challenge, frustration at not being able to move my uncooperative body. 

Another tool I keep in my “deal with anxiety chest” is reading a quote, a poem, an essay…something that helps me view life with a level perspective, and to feel at peace with myself and the world around me.  This morning I share my favorite poem with you who have stopped by, as we all have shared this “heck of a week”. 

The Peace of Wild Things

By, Wendell Berry

When despair for the world grows in me

And I wake in the night at the least sound

In fear of what my life and my children’s lives maybe,

I go and lie down where the wood drake

Rests in his beauty on the water, and the great heron feeds.

And I feel above me the day-blind stars

Waiting with their light.  For a time

I rest in the grace of the world and am free.

I came across Trudy’s blog -Joyful Wrecks-and her poem “Apology to My Hair” and had to share it. Trudy is going through cancer treatment, yet joy, inspiration and humor flow through her blog.  My hair thanks you Trudy, for finally being appreciated! 

Apology To My Hair

I was never satisfied with you
too fine
too straight
too unruly
the way you parted yourself
too close to the middle
the way you stuck out at the back and sides
always slightly dishelved.

I would have preferred
thick
curly
manageable hair
the kind you see in the glossy magazines.

Now that you’re gone
I see I took you for granted
never appreciated your fine qualities
the many ways you served me
how you
warmed my scalp
protected my head
softened my face
flattered my person
reassured me by your daily presence.

I blamed you for bad hair days and took credit for good ones.

When you return
there will be
no more complaints
no more criticism of what you lack
any colour will do
texture too.

You will see
how I have learned
to appreciate
YOU
(Trudy, Joyful Wrecks)