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fun house
crazy mirrors,
these are her eyes.

warping illusion
these are her eyes.

she searches
reaches anew,

faraway near
carefully observes
the presence-day dawn.

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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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