(after Hope is the Thing with Feathers , Emily Dickinson)

What is the sun? at water’s edge?
It is the hope, that thing with feathers,
the song I heard you singing to me,
your sweet serenade swaddling me.

Freely you gave me trust, patience, and love
to stand where I am
just as I am
Here is one song I now sing for you.

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 loss-es

we reach into each
in our worn-ess
in our despondecy-s
we are rich in offering

in our arms
allowing the intimacy
of others into our lives
we are rich.

you, are rich.
in all of y/our illness-es
we reach into each
we have much to offer.

stand where you are
even in lying down.
CKS

It is easy to say “advocate for yourself.” It is another to feel the confidence to do it. It is scary. Particularly advocating medically.

The medical climate in the USA is frightening, and speaking up is not always met with support. Doctors, nurses, aides, all can easily railroad us to places we do not want to be, and are not in our best interest.

This past week I had an appointment to consult about the possibility of something called a cyberknife procedure. Basically it is an intense beam of radiation that is targeted at the Trigeminal nerve and it helps to relieve the pain of Trigeminal Neuralgia.

This is an excruciating pain the radiates from the side of my head to the entire left side of my face. For me, my neurologist believes it is hand in hand with my migraines.

It has been very bad as of late. To the point I am not using my ventilator as I am suppose to be because the touch of the mask is to painful.

At this appointment I was informed that it is a panel that meets to discuss whether they feel this is the right treatment strategy. While I was waiting my friend asked me how I felt. Did I feel like I was on trial? At that point, I said, ” not really, I am trusting in the process.”

I came back a week later for preparations, and this is when I felt a little bit on trial. The doctor after looking at my records more, and seeing that it took awhile to get the official diagnosis of NMO, and seeing that I am anti-body negative, these appeared to be factors in the possibility of suggesting to continue treating with medication.

Then she asked if I wanted her to refer me to a neuro immunologist in Charlotte. I felt very small. I could feel the anxiety rising, and fear welling up inside me.

I felt on trial. I could feel the wall of defense going up. Ultimately, she said they decided to do the procedure because it was interfering with using my ventilator.

Why am I telling this story? Because, it is one of those times that can be a crossroad, and where I was prepared to advocate for myself if need be.

If she had continued on about how I was antibody negative and clinical diagnosis, and how complicated my case is. I was feeling not so tall honestly, and inside my brain was saying, “seriously! I am not here to question my diagnosis. I trust my neurologist and he has spent time consulting with others, and yes, I have already seen that specialist in Charlotte.”

How do I prepare myself? How do I step past the fear and anxiety. It is PTSD from medical trauma. How do I move through it, so I can advocate on my behalf?

I work through art and poetry. I am inspired by poets and artists. One of the poems is Hope is the Thing with Feathers by Emily Dickinson. For many years this poem got me through some hard times.

The Bathers, the digital drawing here as the cover image for this post, was inspired by reflecting with Emily’s poem.

It is about the stillness of water and its ability to wash us and comfort us as we wade through it.

I can call upon these images and words in my mind and it helps calm the anxiety. It helps me take a deep breath.

I literally will picture it in my mind’s eye while breathing; like a mantra, I swaddle and bath myself in comfort.

With that, I am able to take a moment, settle myself, and then speak whatever truth I need to speak in order to meet my needs.

For all I know the doctor was just being nice. I am also not about to have her question all the work that went into diagnosing the NMO.

Not everyone is antibody positive. Even in my 20’s I had classic tell tale signs of NMO. It flipped my lid a little as you might can tell. lol.

If she would have suggested not doing the procedure, I was prepared to question that decision whether she liked it or not.

I will meet my needs and I do trust my neurologist. I need more help than medications are giving us.

While I am glad I didn’t need to say, “wait a minute.” I also was prepared by visualizing poetry and art in my mind and allowing it to help me breathe and settle.

Do you put art or poetry or music etc in front of you to help you meet your needs; advocate if necessary? If not what do you do? And if you have trouble maybe trying art as mantra can help you?

I have rambled enough. Friday is my procedure. Wish me luck and the hope that it does help my pain, because I need relief. Thank you for all the happy vibes and prayers ahead of time.

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