Stacks Image 3204

Prodigious Rest

My health has plummeted this last week, likely due to another infection in my PICC line. It takes everything I’ve got not to push myself to make or work on something. When I’m feeling my best I can find a kind of happiness with about 2% of the energy of my healthy self, pursuing immensely scaled down versions of my dreams and goals and ideas. Right now I’m trying my best to just lie here and listen to music and keep almost 100% of my soul repressed. It’s difficult and painful and sad, as you all know too well. But it’s also necessary to have a chance at getting some of it back in the future.

I can hardly type right now which terrifies me to my core. I’m scared of returning to the state I was in before Abilify - unable to move or communicate in any way - all things darkness. It’s a horror that strikes at something deep within me that only ME/CFS patients could understand; Facing the possibility of the return to the living death.

I wrote the following in pieces when I had a bit of energy:

"Every morning upon awakening, I experience a supreme pleasure: that of being Salvador Dalí, and I ask myself, wonderstruck, what prodigious thing will he do today, this Salvador Dalí."
-Salvador Dali

"What prodigious thing will he do today, this Whitney Dafoe?"

I will do nothing. I will lie in my bed and rest. This is an act of defiance against prejudice from the entire world telling us our illness is not real; A rejection of Western society’s desire to identify us by what we produce; And the power of my will to survive by denying my body everything it longs for and everything my soul needs. My actions will not be hung in museums for hundreds of years nor celebrated by the great minds of the human race. Few people will likely ever know what I have accomplished here - what we accomplish every day. But what we do to survive is more profound than any painting Dal ever made. "Prodigious things" take many forms. We have been stripped of everything but life itself, and we sit with awareness of this shining light within us all day every day. Being so in touch with the very essence of life and what it means to be alive is something very few people will ever experience, including Salvador Dalí, who floated on the ignorant cloud of a healthy[er] body.

These are silent, thankless and unrecognized acts, but they are profound and they change the world as we radiate light and pure awareness.

Never doubt the power and significance of what we do.

Love,
Whitney

   

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








Blog Archives
Index

Year / Month