Tag: nmo

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

(originally published 2020)

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 tv –any 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.

I wrote this in 2020 but I still identify today.

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

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