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Celebrate Life

i dare to love the life
i live.
messy and unkempt.

i dare to love what I do not know
and breathe this 
dirty path.

my sandals rest beside  
my feet.
for she is Holy;
this ground so solid
between my toes.

i dare to walk by
candlelight, and
love what I do
not know.

breathe this dirty path.
messy and unkempt.
breathe this dirty path.

sandals resting;
beside my dirty feet.
CKS

thank you to everyone for your continued support and encouragement

We have decided to keep the Celebrate Life Sale going until the end of the year! Enjoy!

Celebrate Life

enjoy this sale as it continues until the end of 2023

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Heavy or Not

lay down your burdens
lighten with the sky
dawn a new day
no matter what
they say.
CKS

not gonna lie, its been a rough road lately. still not feeling all that well.

a lot of resting and sleeping, more resting, more sleeping. . . and being frustrated and a bit lost. allowing depression to grasp at me. allowing fear to have a little taste of me too.

I recently found my old ipod and it has my favorite Yoga Nidra practice on it. I had allowed this practice to fall off. It is back in my life.

It feels good. It helps. It helps ease my soul. and my mantra or Sankalpa (short positive statement of intention) is:

I give myself permission to accept my body just as it is.

How do you feel about your body? Do you accept yourself? Do you struggle with judging yourself? I wish for us all to find peace in acceptance.

paint much love, always,
CKS
a.k.a. This Crooked Little Flower

Celebrate Life Sale Still Happening

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Immaculate Charcoal

unsullied, i am
in impurities.

unclean, i am
in perfections.

unfurled my chaste
i gather my temperance
on the paste-chalk lines
of charcoal.

sullied is
clean is

pure, breathe air
of imperfection’s delight
i temper my haste
in paper-sand-dust.
CKS

from Brave House Secrets

love in a time of turbulence
repetitive contemplation
active listening


We must act according to our integrity.  How do we find such things?  Where do we find where we belong within the context of belief, integrity, and action?

Practice.

“Repetition strengthens and confirms” a friend once said.  Indeed.  True words.

Practice.

Never give up.  Repetition; teaches us into action.  Actions us into where our teaching needs attention.

Practice, teaching us to listen.

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


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Updates and Celebrate Life Sale

Look into my eyes
Deep in the you
of me, of us.

CKS

Due to my health I had to close my studio early for the June Toe River Arts Studio Tour where I was having the Celebrate Life Sale and was to continue the sale online after the tour.

I had a flare of the NMO. Along with Rituxan, I had 5 days of IV Steroids with an oral taper. I continue to struggle. Fatigue is an issue and my arms are still weaker than they were. I am better despite the struggles. My breathing is not the same since the flare either.

I am taking care of things one at a time. I have not been in the studio. I tried to be there a couple of short visits, mainly to print a few digital paintings to make sure my printer was still happy. I will admit it was exhausting.

Treatment changes to hopefully help keep my health more stable is moving Rituxan from 4 months to every 3 months. I must admit it is a little unsettling. I started at every 6 months and when that was not okay, I moved to every 4 months and for quite awhile was stable until i wasn’t. What happens if Rituxan completely fails? I don’t have a complete answer. I don’t have access to the new NMO approved drugs because I am not antibody positive.

What we are adding is pulse dosing with IV Steroids. This means once a month I will have 3 days of IV Steroids. Steroids do usually make me feel better. Steroids come with there own side effects I don’t like. It is a matter of weighing benefit vs. side effects.

pulmonology, we are doing testing, and depending on the outcome, we might be adding daytime oxygen in addition to my ventilator.

I am working to get back in the studio and hopeful to be there soon.

We are getting more and more pieces up on the CLFStudio Shop for the CELEBRATE LIFE SALE!!! Going on Now! Finally getting back to what we started during the studio tour.

We are working hard to get works up day in day out and they are deeply discounted. I turned 50 this year and I did not know if I would even make it to 50, so this is a great time to celebrate.

So please share far and wide. I would really appreciate it. and I hope you enjoy, and maybe find that perfect piece for yourself or someone you love.

Thank you so much for your continued encouragement and support!

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

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misproportioned

fun house
crazy mirrors,
these are her eyes.

misaligned
warping illusion
these are her eyes.

explorer
she searches
reaches anew,

faraway near
carefully observes
the presence-day dawn.
CKS

Dance of the Forgotten Child. I don’t talk about this a lot. For years I haven’t talked about it. It has not been a part of my life. Many many years ago I had an eating disorder. At one point I was in bad shape. I wanted to disappear. I had the ridiculous idea that I needed to by skinny, to be invisible, to be dead, to not exist, and it was the only way I would be okay. It was control because Life was very out of control. My existence was within the reality of abuse. When you can’t get out, and you can’t scream out, and everything is secret, and nothing makes sense, it comes out sideways.

I saw myself as being very large. It didn’t matter what I actually was because when I looked in the mirror I saw a very large and misshapen person. The dysmorphia was very real, and I never really lost that. What I lost was taking action and practicing not eating. I let it just be.

Fast forward to today. I still don’t know what I look like. I still see myself as being much larger than I am and misshapen. To be honest I didn’t realize how present that still was.

Slowly adjusting my wardrobe to suit both what I like and what works in the chair, it is a fun way of affirming life and little luxuries of life. What is freaking me out is size. I am hyper aware that I purchase clothing at 1x , 2x, XL, XXL. In the chair, I do not like tight clothing. It must have stretch, and comfort. As i am listening to other people, I tried on Mediums and larges and was 100 percent freaked out that they fit comfortably.

My mind cannot compute this. I can’t figure out the funhouse mirrors. I don’t see it. like some sort of alternate universe. I even have tried different silhouettes which I would have never ever done.

I like a-line, baby doll kind of dresses because they are roomy and hide things, but have been very unhappy with this silouette for awhile but couldn’t figure out what I was unhappy with.

Tells me I am beginning to see me in some regard. The new silhouettes feel vulnerable, and also feel good. not trying to hide. Which is also very weird to think about. To see myself as myself. That it would even be possible? Do you see yourself? I think I operate many days still within the Dance of the Forgotten Child , the one still needing to disappear into the wall as a wallflower hoping not to be recognized, safe in invisibility; safe as a shadow.

And, also seeking personhood. Practicing personhood. Practicing being present in my own skin. affirming self. affirming the safety of today. Affirming I am proportioned just because I am. Because it is safe to be who I am.

How do you feel? Do feel safe to be who you are?

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

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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

*Purple, The Poetic Landscape – mixed media on paper, 2″ x 1.75″, CKS – available in CLFStudio Shop

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The Human Road

Light smiled.
With herself, 
She laughed.

She stood still;
And danced
The journey

Come true.
CKS

L752

Kathryn Albertson Park
Boise Sesquicentennial
in search of the iconic
dancing with friends.


What a weekend this was!  Boise was celebrating 150 years!  The city decided to have a Plein-air Art Competition.  I am a pretty solitary soul, however this weekend I accepted invitation to traipse  Boise in search of the iconic with art friends.

What fun!  This particular day as the rest of my crew went further into the large park, I was taken back by the entrance.

It was as if I was seeing it for the first time.  How the light danced across the panoramic scene.  Here in this tiny painting, I played and bathed in  a smile.  Knowing just how human this park was that day.

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


*Kathryn Albertson Park, Boise, Idaho, 1 1/4″ x 4 1/4″, graphite, ink, charcoal, paper, ©CKS

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Independence

freedom from the control,
influence, support, aid,
or the like, of others.
(dictionary.com)

As we in the U.S. come to celebrate July 4th, independence day, I have been sitting with the word, Independence. Both in self and in community. In a time when things feel very out of control. I grieve. I fear. I look for the helpers, because there within is light. The divides feel greater and greater, and I don’t understand. In all the people I know, we are more alike than we are apart. I look to this. To move past the noise so I am not paralyzed into inaction.

Dear Rainmaker,
there are discerning days.
there are days of unknown melancholy.
and then, there are days;
days in which that clutching darkness
dances around my wandering mind, and
I question tomorrow’s dawn.

then I catch a brief smirk upon my lips
when I remember the lilies of the field.

am I sitting with flowers?
am I sitting with flowers, yet?

Fall into the coolness of
the meadow my child.
there is no grief and no madness,
however great, that darkness can consume.

My strength and My peace
shall surround you.
My light shall fill you.

Dear Heart, I love you.
lean on me, through the strength
of those that surround you.
you are loved, my beloved

CKS

We can feel helpless. We can feel hopeless. Grieving in anger, frustration, and disappointment. We pause, we breathe, we hang on until hope and love reside next to us.

I share today a poem I wrote awhile ago, and it is within a greater story and resides in Rainmaker and Flower; pray on dirty knees, my first poetry book.

I share it because I return to this poem when I am in that well of darkness, and feel quite sad and overwhelmed. When my world is spinning and nothing gets accomplished.

Deadlines I have not met. Responsibilities not lived up too, and hope for forgiveness and more patience. When my emotions and mental capacity has weighted me down until I only hear the echo of “I am a loser. good for nothing.” and even less gets accomplished, and I hear less and less, and see less and less; and I want nothing more than to hide within myself.

I become paralyzed in fear. everything, even my art becomes suspect, and I am paralyzed; deciding maybe I should start over; abandoned all together.

Does your world ever appear in bleak darkness? Let us read it together, and know you are not alone. And there is no darkness that light cannot overcome, that fear cannot be comforted; that grief cannot feel kindness, that love cannot find.

It is okay not to be okay. My dear friends, I share my heart because this is what I do. I am with you. I am here in your disappointment, in your anger, frustration, grief. in joy, triumph, and happiness.

We are together, praying as we are; our dirty knees resting in the fields of the lilies.

Enjoy this 10 minute visual meditation:

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

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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.
My heart couldn’t agree more. And fitting in the now.

(originally written, 2020)

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. I wrote about it in 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.


Today, 2023, there are 3 FDA approved treatment for NMOSD (Neuromyelitis Optica Spectrum Disorder, because it is an umbrella. However they are only approved for AQP4 antibody positive patients. I am negative. At this point I have received so much treatment it could be a “masked” negative. And, about a third of people test negative who are actually positive anyway. So there is that.

What this means is my neurologist would like me to have access to these treatments but I don’t. Since I recently had a flare and needed steroids, we are going to see about moving to Rituxan every three months instead of 4. Wish me luck at having access to this since every 3 months has not really been studied as far as we know. Once again my neurologist is consulting with another specialist. I appreciate so much my medical team here in NC.

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

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Spasms

oh I have had some bad nights. My bladder decided to kick into overdrive. the spasms are so very painful I couldn’t stand it. my hubby hugged me, held me part of the time, gave me extra medicine and after it got into my system it did help. I am thankful. I will be honest, if it hadn’t I probably would have said, ER it is. It was that bad.

Why am I writing about this? It is something I deal with on a regular basis. And it is not something that necessarily gets talked about in the open. I learned and realized that within NMO communities, things like swallowing and speech being effected don’t get talked about enough. So, I figure I will talk about these things. Why I have started a “Medical Monday” series on YouTube. Once a month I will post a video discussing my experiences with varying topics related to NMO and living with a severe illness in general. I started the series with this:

mid to late June I am telling my journey to diagnosis. If you are interested stay tuned. You can always subscribe to my YouTube channel and click the notifications so you will know when a video comes out.

The spasms continue. I had to close my studio Sunday of the Studio Tour. My body was exhausted and miserable. I again took extra medication and that did not help enough to allow me to stay at the studio. My doctors called in other medications and as it turns out I have an infection. Infection often cause nerve pain and spasms to be worse. It is exhausting. Hopefully soon I will be feeling better after the right antibiotics kick in.

I am still trying to recover from my recent NMO flare. My support system and myself (myself begrudgingly) know I need to rest. We brought stuff home from the studio so I can do stuff from bed.

It is frustrating, and scary for me. I do not like being in bed. I do not like feeling my body deteriorate. I do not like being sick, and being able to feel and see the effect it has not on just me but my family and my friends. It effects everything in life.

pictured is a detail from “Wading Water’s Edge”. It is both chaotic and melodic, just like water’s edges as you wade in. where ripples turn into eternity, and murky shadows hide. Coolness or warmth hugs my body the further you wade.

I imagine these things in the shower. It is where I get to wade in. I have not been in a pool, or a lake, or a body of water in years now. There are accessible places, I just have not been.

I am happy to be able to have a shower. I spent a long time with bed baths or “spit” baths. It is a gift to feel water running down your body. Feeling your hair and body really clean. I love it. It feels good. Moments of peace.

I watch the edge of the water meet my skin and roll down and off. Over and over drops fall and mini waterfalls cascade. Repetitive repeat becomes mantra for peace, a meditation of letting go and breathing. in and out. finding rest.

I hope you find the peace and rest you might need this day. I will do the same.

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

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Monumental Intimacy

Paradise could be
My deliberate seeker
Tiny spirit bright
CKS

L673

Tiny, tiny painting
Western sky
moment caught seeking


We do what we can.  We do our part.  We are willing.  We are enough.

Parker Palmer writes, in his book, Let Your Life Speak: Listening for the Voice of Vocation, about burnout.  I gave to little he would say; Why? because I simply did not have it to give in the first place.

When I read this for the first time, I immediately felt the connected, “Yes!  I know this!” You said what I have not the words.  I drink of this.  Now what?  Just because I drank that Kool-Aide does not mean anything, truly. It is more of a question than an answer?  A connection rather than a confirmation.

Where do I turn but into that deliberate seeker; tiny spirit; bright.  I seek it where I meet sky; where I meet mountain; where I meet you.

I am still.  Seeking simply is; a journey onward walking.  No trying; no attempts; I am as you are.  and We; we, are enough.  We are tiny spirits bright!  Shining with such brilliance; need no polishing.  We dull ourselves in the trying.

Up there, in that tiny moment, life; a gift of exquisite beauty.

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


*Monumental Intimacy, 1/2″ x 1″, charcoal, graphite, ink, paper, ©CKS, 2013

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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

(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 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.

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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