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Whats in a name

“After all, from my very childhood, I had understood that the artistic experience, at its highest, was actually a natural analogue of mystical experience. It produced a kind of intuitive perception of reality…I had always understood that art was contemplation, and that it involved the action of the highest faculties of [wo]man.”
The Visions of Thomas Merton

_________________________________________________

A friend shared the above quote with me recently.
My heart couldn’t agree more. And fitting in the now.

Friday was my Rituxan treatment, it went really well. Long day, happy day.

December was my Neuro checkup; to my surprise, my neurologist had something to talk about. He consults with other neuro specialists about my case. All come back with the same answer, Neuromyelitis Optica.

2015, when my first severe attack happened leaving me initially paralyzed, doctors then initially thought NMO. It is an autoimmune disease primarily attacking the optic nerves, and spinal cord. People with NMO often develop other autoimmune diseases, Lupus being one of the most common. Which fits what I experience.

Many with NMO stabilize pretty well on Rituxan, and like me, still have attacks. A few months ago, the first official treatment for NMO was approved by the FDA. This is huge! The early reports are showing very hopeful with patients not mostly stabilizing but actually not having further attacks. Meaning actual stability, actual remission. Like Rituxan it does not heal the damage already done, but prevention of further progression is beyond priceless.

It does not come without potential risk. Rituxan is a B cell deplete-r, this new treatment is also an immuno-suppressant, but it works differently.
The preponderance of evidence says NMO, and my neurologist feels it would be good to pursue this new treatment.

It’s a nasty disease. The very positive side are all the advancements in the past few years. In Idaho, we were given a Hope for the best, prepare for the worst scenario. Mortality used to be high; today, it has dropped significantly.

A future without the thought of the potential of being on a ventilator is, well, I have no words. If you want to read more on this, here is an article I wrote in CrossinGenres, Organ Donation and other difficult conversations.

After much discussion, we decided to increase Rituxan infusions first, before moving on to trying Solaris.

For now, I immerse myself in the Creative as I build energy as she reflects back and speaks. and, settle into this name, and the surprising mix of emotions even when this name has been around me since the beginning of this journey. Now official: NMO, Neuromyelitis Optica.

Paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

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Stand where you are

for you have much richness
deep in the you; you are
;
even if it means lying down.

in rest there is life;
cool comfort,
joy in our stillness-es.

in our suffering
in our loss-es,
we reach into our each.

in our worn-ess,
in our despondency-s,
we are rich in offering
.

in our arms,
allowing the intimacy
of others into our lives;

we are rich.
you; are rich
in the all of y/ou/r illness-es,

we reach into the each;
and have much to offer;
humanity’s necessity;

stand where you are
even in lying down.

CKS

Definitely winding down; I am less than two weeks away from my next Rituxan Infusion. This time, I am looking forward to it. I wish it were yesterday.

This past six months has been the best six months in two years. Overall, I might be fatigued and worn down, but I am still able to get up in my chair, still able to do things that I otherwise would not be able to do for myself before.

I also am present. I am not trying to do more, not trying to push through, not trying to be better than I am. I am right where I am and that is where I shall remain for today.

I am using a new eye gaze set up, and that makes all the difference in my life. You have no idea how much energy conservation it provides me.

Drawing more by holding the pen in my mouth. lol, that is somethin’; try it sometime. It is fun, and a lot harder than it looks. Actually, I am not very good at it. My face muscles have a hard time keeping it in my mouth. But, it gives my arms a bit of rest. And, its fun, and makes me giggle.

My pen held in place by Velcro, it can’t fall out of my hand, so, a floppier wrist is not much of a bother, its my triceps, my major movement that gets slowed, heavy, and hard.

And, so I stand where I am, lying down, binge watching much tvany suggestions? – resting in the melody of this life, and enjoying it. At this point I would normally be frustrated and developing more depression and sadness.

And I am not. I am not depressed. I am not sad.

I am joyful. I am happy. I am excited about things to come. Things that are happening; new and continuing. I am happy in feeling more present in the lives of my loved ones.

Where are you standing today? What does your present look like? Mine looks like this, and I imagine it is wrapped in a lovely pink bow!

You are enough, and have so much to give to a world that needs the you, you are. My hope is to be a part of changing the conversation around being sick, and how we treat people who are ill, suffering, and dying. How we treat people.

Each time we act with pity, we take away a person’s power. Each time we dismiss someone because of their suffering-s, we take away their power.

Each time we act in amazement at an accomplishment; despite of; we take power. Each time we discount illness and suffering because of amazement in accomplishment; We set apart rather than bring together.

Too often we treat, and act as though a person must overcome, defy, get well, in order to have worth. We take power away.

All these are wonderful things. overcoming, defying, all this is not in and of itself a problem. But why isn’t living with and alongside of provided for, cared for and caressed?

In the heart of it, that is what happens in order to get to remission of an illness, the easement of a grief. and then there is living when remission and easement is not possible.

I am not not trying to live, I am not trying to be well. I am Connie, living with a rare disease, a future unknown, but its unknown for everyone, because we are not there yet.

I love this life, standing where I am.

please share today, and invite others.

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

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Perseverance Meets Sustenance

Perseverance Meets Sustenance, digital drawing, CKS

When Perseverance
met Sustenance
embers ignited

into soul fire.

Winter
caressed her shadows;
and peace settled itself
within her heart-walls.

CKS

from series Reflections of Sentient

a growing family tree
drawings of warmth and growth
digital drawing

Winter is here, and for many holidays have arrived. I hope you remember how beautiful you all are.

Tomorrow is #GivingTuesday. A day devoted to supporting your favorite charities. There are also non-official places and people to support as well. Individual people doing awesome things. One such person to consider is:

A Cornered Gurl – Founded/Owned by Tre L. Loadholt, an absolute champion of young writers and a talented writer in her own right. Donations through her PayPal on A Cornered Gurl go to pay an honorarium to writers. Check it out, read, share, subscribe, and consider donating here

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

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Reflections of Sentient

Reflections of Sentient Connie Karleta Sales

Friendship,
skins peeling in equity;
silken curves that crash down
the edge of my ears,
like waves
feel into you,
into each.

words drip.
you are peace.

Friendship,
writing into my spring;
fall cooing winter’s despair,
bended-tree whispers,
I listen, as
soundness reasons
with her own insanity.

blood-bitters soak.
you are quiet.

Friendship,
music calling as a dove
rippling within sincerity
encircling my smile;
drenched,
seen into water’s edge
satire satisfactions
appease rejoices,
the you within each we.

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower


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afternoon in the Telling Place of her studio

To grok in Your being
I unleash in slenders
and leap in-subversive;
substance of my body.

Underwinter,
you follow my
displacement and supplant the
nearness of my come after.

unsubstantial frailties
of my countenance,

hear our prayer.

CKS

paint much love always,
Connie Karleta Sales
a,k,a. This Crooked Little Flower


Posted on

March 2019

Dear Friends, Can you believe its Spring?
No leaves on trees yet, but the natural Spring flowers of the Appalachia are colorfully breathing, and it is glorious. How are you feeling? I am feeling strong, happy, and healthy. Yay! With that, here is what Crooked Little Flower has been up too:


Interview in Hashtag Art Magazine: honored and excited

https://www.hashtagartmag.com/writing/2019/3/15/inkedgirl-contemplativeart-contemporarydrawing-crookedlittleflower?fbclid=IwAR2bOX7UL7_KnCmtY360CUAEsdjKSNXi6C-bWlyN7RGJtulmKOwifp2QojM

Recently Published: Enjoy!

A New Challenge in SnapShots:

Save the Dates!

  • Zine Issue #1 – published May 9, pre-order opens April 15th
  • Poetry Books – published May 31st, preorders open May 9th
    • A Sense of Place – poetry and landscapes of my travels
    • Pace e Bene – compilation of previous favories
    • Night in the House of Poetry – poetry in meditation form; based on the previous series of the same name.
    • Mary – re-creation of previous series, “Mary,” my God says. “Yes,” says my Mary
  • Studio Tour May 31-June 2 – 10-5 each day,
  • Friday, May 31st, 5-8pm – Reception at TRAC Spruce Pine, NC

Have you Noticed?

Here on the website I have added categories and tags in hopes it helps you choose your adventures and rabbit holes here at Crooked Little Flower. I would love to here from you if it is helpful.

Available for Purchase:

Studio is happening!

In the music of Tom Petty, I am Learning to Fly

#Storyboarding, CKS

Interested in exploring visual prayer and intuitive observation drawing? Visit Here for details

  • Private/Semi-private (1-2 people) sessions to come and enjoy the studio with guided explorations in intuitive observation and visual forms of prayer/meditation
  • $75/session or 4 sessions /$200, average session is 2-3 hours
  • Contact us to schedule

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower


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Heal Me and I Shall Be Healed

Welcome to #firstthursdays; home of the new. From artwork to poetry to whatever the new may be. I am also exploring ways to have fun and make it easy to travel the rabbit holes of Crooked Little Flower. You will start noticing the addition of multiple categories; M-F each have their own particular theme and labeled according to poetry, figure, portrait, you get the idea. Allowing you to explore as you wish; according to your mood, needs, and desires. I have added a tag cloud at the bottom of the site; here you can explore further; the abstract portrait perhaps, or prose poetry versus haiku. Choose your own adventures!


Today, I also want to introduce you to some new available pieces. I am very excited. These are the first finished digital etchings. It feels good to be wearing my printmaker hat again. Many of you already know, I was a master intaglio printmaker. I love the copper plate and all it does with ink and paper.

I would throw my plates on the ground within my pathway of etching and pulling prints as I loved the conversation of unanticipated mark-making; the floor, my feet, and the plates. I used hardground, drypoint, and carborundum predominately.

Today, instead of copper and acid bathes, my Surface Book and jpeg is my plate. Sketchable, Rebelle 3, and Adobe become my grounds. Paper and ink are still paper and ink.


I am simultaneously working on two related series. I am working with Breath, and I am working once again with Jeremiah, “Heal me and I shall be healed. . . .” Portraits and figures are emerging.


Here are the first five. They are editions of 10, signed, numbered, and the jpeg plate retired.



Read the recent interview here


paint much love always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower


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Sketching Breath

Sketching Breath Connie Karleta Sales

Slight wind
leaves are turning, why?
A smile is a blessing to a
loose heart
losing heart.


Colorless soft silence;
Feels as though my chest is caving in.

Gravity hit me.

light harmony
tinker of notes
have nothing
have it all.

love

pain;
transient in
her harmony;

tinkers
notes about everything.

CKS

Sketching Breath, digital drawing, 11 x 8 1/2 in (27.94 x 21.59 cm)
from series in progress, and so I shall be, reflections with Jeremiah,


A single poem; Three poems; dance in the togetherness of love.
My Father , Son, Holy Ghost.

Light of my Christ, Light of universal light; beyond the self of my body. Of Buddha, of you; of other; of we. Daily.

How do you read the words above? Does it change in a day, each hour? This is how my life lives forward. A dance of the flow, of moment unknown; of smiles and tears, miles and rest.

Breath

I lose heart, and I loose my heart. Never a static beat. I breathe in and breathe out. I move and I rest. Does it matter where I go? Does it matter who I am?

I have been drawing next to Jeremiah again. I just love him and all that he is and is not. “Heal me and I shall be healed.” he says. “Save me and I shall be saved.” “for You are my praise.”

That Love within you, the You within you; that dances in the good and the hard. The Buddha’s Breath “. . . and I shall be. . . “

Is it enough? to know I am safe; safe to be who I am.

paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little flower

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Slender Wisp

Billowy slenders wisp toward the sun;
fingerlings of sky, teach me;

of my frosted thoughts
notions of vision-dreamer unattained;

frustration’s mark,
cold and dark
am I.

Winter slenders,
depth filled strength
flexing in whisper’s breath;
tickling the sun,
filtering through frozen mist;
living, you are.

Teach me,
in the marrow of your alive,
resting in your stillness
my exhaustions caressed;
revived into the gasping
waters; soaking me whole.

CKS

Slender Wisp, digital drawing, 10 x 8 in (22.86 x 17.78cm)


This week I expended a lot of mental and emotional energies. I did call to ensure the right bags were shipped, and no, they were not. In fact, I was told there was no record of my call. I was questioned whether I really spoke to a supervisor.

She repeats that there is not proper documentation, and without a doctor’s prescription, they will not send the bags. I volley back asking where did it go? The company you bought out had it, your company assured Blue Ridge all the information transfers. What happened?


I can’t speak to that ma’am
You need a doctors orders for the flush bags.


I state clearly my intention to have Blue Ridge, (which Lin Care now owns) brings bags, and will not be charged. This is not my fault as you are implying. Without the right supplies, I am at risk to be hospitalized, and I will not risk my life. Without proper nutrition and hydration, I will become at the least weak and ill, and at worst, I will die. I have been using the bags with flush for a year now.

At this point, I am tired. my voice is getting weaker, and she is having some trouble understanding me. After all is said and done, my husband called the doctor. Over the course of a couple of days the prescription was faxed multiple times. Lin Care stated to my doctor’s office it can take up to 48 hours to receive the fax. I will call again, giving them their stated time, to ensure it was received. When I am better rested I will write a formal complaint. I am filing not just with the company, also the BBB, and my states Attorney General. We will call everyday until it is resolved if we have too.


In word and image is how I reset. I empty my soul until I feel the warmth of love and safety once again. I called out for help, and the winter-slender trees passing through the sunlight answered.

Stress is a trigger for disease. It exacerbates exhaustion and fatigue. Couple it with the cold/infection I have been battling for over a month now, and I am spent. I am mentally and physically tired. I am okay though.

I have support. I have practice and skills within my own self too. My quality of life is profound. Yes, I can get lost in moments of sheer “cabin-feverness”. The I want out, now! Not another moment! I am done!


This is normal. Who doesn’t. I get to look around at my loved ones. I get to pause, and see beauty. Seeing the human on the other end of the phone line; she is following her job. She has bills to pay; she is beautiful. The situation is not beautiful; she did not invent it; she is in the middle of it just like me.

My family and friends are in the middle of it, just like me. We all have are experiences that exhaust us. Life never promises easy. What I know is life is no less beautiful, and I get to decide how I see. I get to experience and acknowledge a situation for what it is. unacceptably ugly.

I also get to decided how I respond. And that is a most wonderous choice no one can take away. I choose both honesty and happyness.

paint much love always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower


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and, please don’t forget share. My work is meant to be shared. Thank you so much! CKS