Posted on Leave a comment

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

Don’t miss a thing!
Art ~ Poetry ~ Life
in your inbox

Posted on

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