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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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She Walks, Dreaming in Love

These drawings, such an important part of dreaming forward.
Series, She Walks, Dreaming in Love

Often, when I dream, I am walking; dancing in the meadows in the fields, with sunflowers and lilies, most often. Recently, when I dream, I have full use of my hands and am a carpenter.

These dreams are so vivid, I sometimes wake up disoriented as my actual reality of limited use of my arms and hands, and no use of my legs abruptly makes itself aware.

Walking dreams, and dancing, began since i first became severely ill in 2015, and was initialized paralyzed with this disease. I learned this is very normal within paralysis community.

At first, I would cry, be confused, frustrated. Deep sighs of despair as I lie there in bed. I found it backwards. Dreaming was real, and waking was the nightmare.

To be honest, it was the measure of the stress and unknown at the time. Our world, mine and my family’s world was shaken. I was alive, and making progress in physical and occupational therapy. I was hopeful, and I needed cheerleaders to help me in this.

There were so many unknowns. How do you digest hearing “if your alive in 5 years, most likely will be blind and wheelchair bound.” then move into “well, we don’t know, and we don’t have the ability to help you.”

Feeling very alone in moments like these:

2016, Idaho. I am struggling in Occupational therapy. My therapist does a few evaluation tests on my arms/hands and finds my strength and grip strength has decreased.

She sends her recommendations to my primary care physician, who then sends it on to the neurologist. I am now sitting in the neurologists office with my sister in law at my side.

He says “The rehabilitation hospital does that.”

I say, apparently not because my occupational therapist sent it to my primary who sent it to you because she said you do it.”

“No, they do it.”

The OT’s recommendations and concerns went into what I call the Bermuda triangle of passing the buck into never-land of no action.

Now, look at this:

2017, North Carolina. I have been in physical therapy for a little while, mainly learning wheelchair skills, and learning to use the electronic stimulation device on the various muscle groups to help them fire and in turn help with muscle tone etc. Then things turned from these skills to re-evaluations, and then trunk control, and then the day came when my PT compassionately said that he ethically could not continue because PT was doing more harm than good. My body was clearly struggling and he was calling my doctor.

He scheduled me for two more visits; one to finish the final muscle groups with the EMS machine, and the second to teach my family how to help assist me in transferring from place to place.

That first last appointment came. My husband was with me, and I was not well. My PT just immediately taught my husband full assist transferring and even practiced it with our car. and told my husband, I am immediately calling her doctors.

Yes, and that is how 2017 began as I know it today. Only this time, doctors, nurses, home health, speech therapist, PT, OT, medical social worker; they all came on board,

and no one shrugged their shoulders and left us alone.

My family and I were hugged, were cared for, were taught, were provided for. We were provided with the physical, mental, and emotional tools to grieve, to be, to learn, to practice, and to become.

Now, I am a fighter, I am a glass-full kind of girl. Even in Idaho I found those moments. My PT’s and OT’s were amazing. I love them today, and hope I get to talk to them again. It is with that help, that love.

If you want to hear about one of those moments you can listen here:
https://soundcloud.com/radioboise/stray-theatre-december-24-2017-story-story-nights-dazed-and-confused-rocked-and-rolling-stories

So, what does it mean when I say, She Walks, dreaming in love?

Today, I enjoy those walking dreams. They are magical. I wake up in a smile and not tears. My limitations are everything and nothing simultaneously.

It is not easy. Don’t get me wrong – There is nothing about this that is easy. For my family, and for myself.

Life does continue. It does ease as we move through and adapt. Little by little equipment and routine happen.

We get to practice patience, and delayed gratification.

We get to greet the sun, and say hello to the moon. We get to walkabout in love, no matter what it looks like. My wheelchair walks for me, my computer talks for me. How cool is that.

and I am never out of reality, I am always dancing in the fields with the sunflowers and lilies; with dandelions wisping through my hair, caressing my cheeks.

These are what these drawings are. They are the dance of love, the dance of choice, and power. They are the dance of grief, the dance of the unknown.

They are my dreams. They are the simultaneous illness and life of my body.

They are the moments of never being alone.

They are the dance of dignity; created with all the limitations of this body. braces and Velcro, pillows and positioning belts, whatever it takes to dance.

She Walks, Dreaming in Love VI, 30 x 22 inch, paper, ink, graphite on paper, 2018
She Walks, Dreaming in Love II, 30 x 22 inch, paper, ink, graphite on paper, 2018
She Walks, Dreaming in Love I, 30 x 22 inch, paper, ink, graphite on paper, 2018

available through dk Gallery

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

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Heal Me Open

Rise through darkness;
Sun glittering amid her trees.
Awake. Alive.
Revisiting the feeling of being.

CKS


been looking for a means to draw using my eye tracker; just couldn’t figure it out until yesterday. I realized I could set the “mouse” settings. I set one to “hold down” and lines became possible.

Now, I am practicing making lines. It is not as easy as one might think. Concentration and realizing how much your eyes move and you don’t realize it.

Keep exploring! and paint much love always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

lines of possibility


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Indeterminate Cycle of These Bones

Introducing #wheelchairwednesdays
Living with chronic illness is hard and joyful, frustrating and beautiful. We adapt within an unknown journey. For me, it is not only the physical illness but the journey through the mental as well. Diagnosed with PTSD, DID, anxiety disorder, depression, eating disorder, self-harm; all as response to years of abuse. Then, as an adult, reaching out for that help was a journey in and of itself. And then today, as my physical illness comes with its own depression, the fear it brings back. Sideways and weird-ways, it took many years to find my path. With that, I experienced what so many do, women and those diagnosed with mental illness; disrespected and dismissed; treated poorly and vulnerable to other kinds of abuses and neglect. Wheelchair Wednesdays is about this journey. It is the joy, the difficult, the downright ugly. It is also where I go for comfort and safety, out in the landscape.


The following is a flashback to 2016, a day of fatigue and neuropathic pain. This is how I expressed it; how I got it out of my head, coped, and what I did about it. Acceptance of allowing the pain and fatigue to be, and yet not giving up or giving in.


There is a cycle to the bones;
Muscle and nerves.
Static

There is a cycle to the static.
Muscle and bones.
More Static.

There is a cycle to the madness
Bones and muscle.
Static.

Physical static.
Painful static.

Indeed.
There is a cycle to these bones.
and the end?

Static.
Indeterminate;
string and cans.
CKS

The Cycle of Bones, black and white digital photography

Description Study
Self-Portrait
Acceptance in attempting something else


The past days have been tired ones.  My stomach feeling as though it is doing crunches in a workout even though I am at rest in bed.  The back of my calf muscle aches deeply; toes twitch, hips, arm, thigh; quiver; head. simply hurts.

Fatigue once again places itself upon my body, and I drag myself around because I determine it so.

Frustration.  How much can one person, rest?  I have things to do.  I have things I want to do.  I get up. I lie down. I sit at the computer.  I turn the computer off.  I rest.  There are those days in which such nonsense overwhelms me.

And, I want answers.  I want to know what is intermittently happening again and again.

And, in such cycles I know I must remain diligent in stating what is better, because much is better.  No, I am not making the gallant strides I once achieved.  Small moves.  One step forward and two steps back.

How about two steps forward and one step back.  Yes, this is better.  All of life is a cycle, so why not this?  It is merely a cycle.  My eyes will come around again, and I will see more clearly; physically and mentally; rest dear Connie, rest.

Today I wanted to write about something fun.  I shall work on that for next week.  For now, gratitude list to make. Take care my world.  You are beautiful.

Paint much Love, always,
CKS a.k.a. The Crooked Little Flower
words and images ©CKS, 2016

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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