Posted on 5 Comments

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

Posted on 6 Comments

i am in love.

with the wind
of steely gray charcoal;
grit and truth.

life of the upside

rolling down hills of my Spring.

I am in love.
I am in love.
love feel Spring am I.

where are you
within your Spring?
CKS

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


Posted on

Standing Human

weary joint-knot
fade pale your wounds
into the horizons of the sun;
setting our hearts to rest.

CKS

Standing Human, digital sketch, 10 x 14 inch (25.4 x 35.56 cm)


In the past week, I have been witness to people being treated less than. Also, being lifted up by still others.

I don’t understand why we can hurt each other as we do. I don’t know what drives us to knock down, stifle motivation and passion. There is nothing wrong with honest reality. That is different than purposely separating and demeaning.

Ego drives us to act better than we are, or to put someone down to make ourselves feel better.

I love watching that darkness trying to suffocate life, and see the love actions of others making sure light wins.


Much of my reflections lately come back to mental health, in particular how we treat people with mental illness. By random chance, an article about a possible development in Dallas came through my news feed google graces me with on my phone.

It caught my attention, because the possible development involved Timberlawn Psychiatric Hospital; to be turned into some sort of homes/gated community? Caught my attention. In the mid 1990’s I was there. Some pretty horrific experience.

This led to an article last year announcing its closing. The state was going to close them if they didn’t close themselves. A rabbit hole of articles and I realize it wasn’t just me. My experience was minimal compared to the horrors some experienced.

My rabbit hole keeps expanding. My questions grow. My desire to speak more urgent.


Profits and less than(ness).

Other than to say, my desire to finish and produce the play I have been working on is reinvigorated. I am placing the words of my molesters and abusers next to words of medical staff. Then placing the words of dear friends, mentors next to the words of yet more medical staff.

Whatever you call it, two words may describe; 1) unacceptable and 2) love. May the play example both for the sake of awareness, education, connection.

May you be empowered to speak up for yourself even when all seems hopeless. May you find a path, your path.

You are beautiful. You are enough.

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


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Posted on

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

Posted on

Violet is Her Silhouette

How slow the Spring
And so am I.

Violets danced
my weekend air;

While forests bare,
I soaked.
CKS


Depression and anxiety go with this journey. Sneaky she creeps like mist and settles herself as crystalline fog. It is easy to get caught up within her.

Easy to be embarrassed.

What is she really? She is fear; hurt, anger, frustration. She is the other of presence. She is the un-real.

What do I do when she blankets my body and soul? Action. The answer for me is action. I could sit within her and become very comfortable in such isolations. Or, I don’t.

It is a decision; nothing more and nothing less.

It has been an unusual winter, and my road at my house in poor shape. Mud, ruts, do not play well with my wheels. And, battling the cold/infection, fatigue, among other things, I fell into her.

I made a decision. Seeing where I am, I made a different choice. Starts with getting up and getting out. air, land, sky, beauty; always heals the soul.



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

Posted on

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


Posted on

Breathing Through Fear

Fear of my Hunger
of helplessness soaking your deafness.
not your fault; not mine; so whose?

left there I am nowhere.

The leaves are rustling,
twinkling soft winks through my window;
it is a smile pausing
a Moment of none.

CKS

Breathing through Fear, digital drawing, 10 x 8in (22.86 x 17.78cm)


I rely on my feeding tube for nutrition and sustenance. My stomach does not empty fast enough for bolus feeds, and swallowing ability is limited. Nutritionally balanced formula and water are slowly dripped via a feeding pump 24/7.

My formula and supplies are delivered monthly. At the end of December the company delivered a weeks worth of formula and supplies, and stated the rest will be shipped. It was then they informed us they were bought out by another company. New company drop ships everything.

That was on a Friday. Come Wednesday, no formula and no supplies. I call to make sure everything will arrive by Friday. This is when my local company and I learned that, no, my account was not set up; my information as a patient was not transferred over in the buy out.

My local company and I get on the phone with this new company. I am told they are waiting on my chart, and there is noone to contact to expedite. I must wait.


So, my formula and supplies are not going to arrive by Friday.
“I understand it must be frustrating, ma’am.”


Um, I rely on this for my nutrition and sustenance. Running out is detrimental. Frustrating does not describe how I feel. Eventually resolution did happen. I spent until yesterday without. I dealt with not having enough.

It does not end there. They sent the wrong bags. I call. I am told they will correct this but will not be able to ship the right bags until next month. NO. This is not possible. I have a few extra but you must fix this and send them. I shut down the initial attempt to blame everyone but their company with the firm broken record technique. The correct bags are being sent. I will call today to ensure it is done.

I was Hungry, Angry, Lonely, and Tired as the adage goes. And I did what the adage says to do – HALT.

My personality is such, today, I speak up. I am a squeaky wheel. My family squeaks on my behalf. I can remember when this was not the case. I remember myself, when I was terrified and quiet to my own detriment.

Any small opposition, I shut down; sometimes hiding in my closet; doubting my own reality; finding new ways to call myself stupid.

Making it okay to be hungry; I don’t deserve to meet my needs. Selfish to ask and feeling guilty over feeling scared; when frustration does not describe the situation.

These feelings of panic and anxiety are familiar. I feel small and humiliated; making hurt normal and making a wrong; right. A mix of inexcusable behavior, livable.


My natural inclination is to write, to doodle, to draw until it leaves; until I feel safe again; until I am able to look up and say, okay, its gonna be okay Connie.

The only difference today is having a few more techniques in materials and facility. I have a greater sense of self. Response versus desperation.

This week, I chose to breath into the fear. With this, I smile into the hunger. I sit with anger. and we dance, and the dance is genuine, life lives full, and I stay in view. Occupying the space I do. My needs; met.

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


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Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

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


Posted on

My Beautiful Mountain

Mountains 
are monumental
whispers
within my soul.
CKS

L147

Somewhere in Idaho
Mountain Study
Inner Joy


Once again, lost in Idaho.  We always love to take the back roads.  There is a certain magic and safety in the wilderness.  It feels as if the mountains and the pine trees are there to protect you.

Here the mountain rises up and asks me to do the same.  She recharges my insecurities. I do my part to protect her.  Do my best to leave no trace, so that generations to come will be able to experience the mountain just as I do in all her beauty.

The ink dances with the sanded paper.

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


Posted on

Purple, the poetic landscape

musical color
smelling the cold
a secret-wise in repose
CKS

L776

smell of rain
purple mountains
big sky


I love the big sky.  I love the open road.  I love sinking into the smell of rain.

When the rain comes, I am careful not to tread.  Trails are a gift, and if we walk on them in the mud we damage the terrain.

The trails widen and erode; leaving our scars behind.  Here I remain with faraway eyes and sweet eternity’s scent.

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