dancing – Crooked Little Flower Studios

These drawings, such an important part of dreaming forward.
Series, She Walks, Dreaming in Love

Often, when I dream, I am walking; dancing in the meadows in the fields, with sunflowers and lilies, most often. Recently, when I dream, I have full use of my hands and am a carpenter.

These dreams are so vivid, I sometimes wake up disoriented as my actual reality of limited use of my arms and hands, and no use of my legs abruptly makes itself aware.

Walking dreams, and dancing, began since i first became severely ill in 2015, and was initialized paralyzed with this disease. I learned this is very normal within paralysis community.

At first, I would cry, be confused, frustrated. Deep sighs of despair as I lie there in bed. I found it backwards. Dreaming was real, and waking was the nightmare.

To be honest, it was the measure of the stress and unknown at the time. Our world, mine and my family’s world was shaken. I was alive, and making progress in physical and occupational therapy. I was hopeful, and I needed cheerleaders to help me in this.

There were so many unknowns. How do you digest hearing “if your alive in 5 years, most likely will be blind and wheelchair bound.” then move into “well, we don’t know, and we don’t have the ability to help you.”

Feeling very alone in moments like these:

2016, Idaho. I am struggling in Occupational therapy. My therapist does a few evaluation tests on my arms/hands and finds my strength and grip strength has decreased.

She sends her recommendations to my primary care physician, who then sends it on to the neurologist. I am now sitting in the neurologists office with my sister in law at my side.

He says “The rehabilitation hospital does that.”

I say, apparently not because my occupational therapist sent it to my primary who sent it to you because she said you do it.”

“No, they do it.”

The OT’s recommendations and concerns went into what I call the Bermuda triangle of passing the buck into never-land of no action.

Now, look at this:

2017, North Carolina. I have been in physical therapy for a little while, mainly learning wheelchair skills, and learning to use the electronic stimulation device on the various muscle groups to help them fire and in turn help with muscle tone etc. Then things turned from these skills to re-evaluations, and then trunk control, and then the day came when my PT compassionately said that he ethically could not continue because PT was doing more harm than good. My body was clearly struggling and he was calling my doctor.

He scheduled me for two more visits; one to finish the final muscle groups with the EMS machine, and the second to teach my family how to help assist me in transferring from place to place.

That first last appointment came. My husband was with me, and I was not well. My PT just immediately taught my husband full assist transferring and even practiced it with our car. and told my husband, I am immediately calling her doctors.

Yes, and that is how 2017 began as I know it today. Only this time, doctors, nurses, home health, speech therapist, PT, OT, medical social worker; they all came on board,

and no one shrugged their shoulders and left us alone.

My family and I were hugged, were cared for, were taught, were provided for. We were provided with the physical, mental, and emotional tools to grieve, to be, to learn, to practice, and to become.

Now, I am a fighter, I am a glass-full kind of girl. Even in Idaho I found those moments. My PT’s and OT’s were amazing. I love them today, and hope I get to talk to them again. It is with that help, that love.

If you want to hear about one of those moments you can listen here:
https://soundcloud.com/radioboise/stray-theatre-december-24-2017-story-story-nights-dazed-and-confused-rocked-and-rolling-stories

So, what does it mean when I say, She Walks, dreaming in love?

Today, I enjoy those walking dreams. They are magical. I wake up in a smile and not tears. My limitations are everything and nothing simultaneously.

It is not easy. Don’t get me wrong – There is nothing about this that is easy. For my family, and for myself.

Life does continue. It does ease as we move through and adapt. Little by little equipment and routine happen.

We get to practice patience, and delayed gratification.

We get to greet the sun, and say hello to the moon. We get to walkabout in love, no matter what it looks like. My wheelchair walks for me, my computer talks for me. How cool is that.

and I am never out of reality, I am always dancing in the fields with the sunflowers and lilies; with dandelions wisping through my hair, caressing my cheeks.

These are what these drawings are. They are the dance of love, the dance of choice, and power. They are the dance of grief, the dance of the unknown.

They are my dreams. They are the simultaneous illness and life of my body.

They are the moments of never being alone.

They are the dance of dignity; created with all the limitations of this body. braces and Velcro, pillows and positioning belts, whatever it takes to dance.