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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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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 ┬ęCKS, 2016

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Breathe, Soul Voice of You

Connie Karleta Sales, Exhale

single breath,
divine sense of
a moment;

being.

Feeling her in
arms so warm;

exhale.

into her ecstasies we
remain God-shelled
and life arisen.

CKS


Bedside Sketchbook self portrait, digital gesture pencil drawing

Allowing the Creative to speak for herself. An extra treat this week I hope you enjoy. Feeling the need to place the breath, the exhale, the pause into the universe; accountability and sharing. It is safe to be who you are. It is safe to be who I am.

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

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Seeping of the Never

Flesh from my skin;
Bone, you daft;
Dark as night,
As death crawls, 
Seeping into the pores; 
My wells deeply contaminated
Spread like long shadows;
Moans hollow
The un-free.

CKS

Seeping of the Never, bedside sketchbook, digital drawing, 7 x 5 in (cm)


Sometimes, life grips to the tail of our yesterday and without a word leaves us mute; locked in our feeling of “I must do this on my own.” Locked in the voices that whip me with shame and embarrassment. I am better than this! I can do this. I am not stupid or dumb! I am not lazy or unmotivated! Hear my wet words; muffled and damp from my waters falling; tears within the secrecy of the I can’t.

I don’t know what “it” is; exactly. I have grown into realizing the “it” is probably a mixture of the effects of trauma past and learning disabilities. Where I once worked myself into illness and hospitalization trying to meet you where you need me to be, and I started to go there again without a blink; I choose not to go there. I choose, and truth is, I also do not have the energy to try.


My illness is what it is; I am still battling this cold/infection. I am depleted. I am not able to take care of all my responsibilities. I ask patience. Word/Image fill my soul.


I pursued working with an organization to help on the business end of business. Getting further than I ever had, I of course thought; I can do this. Truth is I cannot.

I can’t read the business plan outline let alone comprehend how to do this? Not an intellectual issue. I have had this issue my entire life; an embarrassing barrier in school and my attempts at regular employment. I spent a great deal of energy to hide it. I can do this; Connie, you can do this; figure it out.

I did create my own work arounds. Nobody seemed the wiser until college. The advisor didn’t know what to do with my test results. she said, it doesn’t make sense. You comprehend more than you actually read and that is not possible. I was in the bottom percentile in reading speed and the top in comprehension.

I stared and spoke with my stoic self, for I knew this answer. Apples and Oranges. You have one test in which we circle which word we are at when you say stop (reading speed). Another test in which at the top is a paragraph and multiple choice questions following (comprehension). Apples and Oranges.

You assume I actually read that paragraph. If you made me do that and then go through the questions I would never make it. I can no more tell you comprehensively what it is that paragraph. I can, however skip to the questions, and treat it as a word search puzzle. I don’t “read” anything.

She said, well, clearly you don’t need study skills class which is what this is designed to catch students who need help. I said okay.

Middle school I was simultaneously in honors English/literature and next hour I was in remedial reading. What can I say, I am a girl who has been obsessed with words since I was little, yet, words as words are actually very difficult for me to use as school and work need of me.

I am girl who is good at complex math and physics yet struggles to open a simple piece of mail or compose email or maintain her own blog/website.


In kindergarten I pitched a big fit when I wanted to be at the table with the kids who had recipe boxes of words. I threw a tantrum until I had my recipe boxes of words. I told them, I know those, those are words; I can write them, I love them, I want more of them please!!!! I begged.

No, Connie those are not for you. I pitched my fit until I proved, yes, they are for me. I already have basic writing abilities.

Yes, I struggled to put them in sentences, I failed diagramming sentences. Yet, my favorite two books are actually first, Mr. Thesaurus and Second, Mr. Dictionary.

I am the kid who could have told you where to find the answer (its half way down on the right side of the page) and yet somehow blind if you make me actually try and read and tell you the answer.


Fourth Grade, Mrs. Campbell, she gave me a gift. One day, she said, tell the story of the words. I did. I could read aloud in animation and inflection and body the words. After I could not necessarily tell you what I had just read, but other people could. In fact, as an adult, it translated into being a good narrator, reader in church or public. People enjoying listening to me speak.

Even if I had to spend hours afterwards on my own, doing my thing, in order to soak into my bones what I had read aloud so eloquently.

I doodle and fidget in class or on the phone to soak in the material. It is a lot of energy to spend figuring out what it takes to get by in this world when your brain just doesn’t fit in.


I loved hanging out in the Rainbow Room in Elementary school because I fit in better. I felt safe and as though the kids there got me. I didn’t have to work so hard to fit in. I didn’t feel awkward there.

In the Rainbow Room I didn’t feel awkward. Then I felt weird. How come there is “Rainbow Room” and “the rest of the students”. What is the difference?


Forth Grade, Mrs. Campbell introduced us to Shell Silverstein. Honestly I was an adult before I understood the word poetry. And until now, I didn’t understand or label myself a poet; still don’t call myself a writer.

I don’t know what I am. Does it matter? what/who I am?

All this spilling from my eyes over words, a business plan template and examples. and being asked to do it. I break down mentally/emotionally. My sweet husband at my side loving me as I am; and telling me its okay to say no. I don’t have to figure anything out.

I tell him I feel like I am spinning as I did in attempting regular employment. He nods. agrees. He doesn’t understand why I feel the need to figure “it” out, why I have the obvious need to prove; I can do this. When clearly, there is something about my brain that no matter which road I take ends the same way. Connie, hiding, getting soaked in her water, falling.


I find myself shaking and in tears. I simply can’t;

and I choose not to even try. I have enough. I have been happy and fairly free of attempting to fit in.

There is where I wish to remain. How easily I assume I am doing “it” wrong. I am less than, I am not as good as, and I must figure out how to do it right.

Because if I don’t I am going to be in trouble, I have no worth, and that is never a good thing. I choose rest. I choose to allow myself to grieve, to have anxiety, and to say, no, I don’t have to figure it out. I can just keep being Connie. It actually is safe to be who I am.

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