Not Enough Spoons: Writing about Disability and Chronic Illness

by Angie River
photo-4-300x225Around February of 2014 my body began acting in ways it had never acted before, doing things I didn’t understand and couldn’t explain. Doctors began the long process of diagnosis, poking and prodding, taking blood, having me fill out numerous forms and questionnaires, testing various medications on me in search of something that would improve or eliminate my symptoms. Over the course of many months I began racking up a series of diagnoses, but the words that the medical system assigned me, while being a bit validating, didn’t help me to deal with the things happening in my body and life.
 
I found that I was in grieving for my body, mourning the abilities I’d lost such as favorite hobbies like rollerskating and going out dancing, or basic things like being able to clean the house or grocery shop without exhaustion. However, at the same time that I was grieving, I was also celebrating my new-found connection with my body, my improvements in self-care, and the community I found with other disabled people.
 
I was at a loss for how to express my feelings and thoughts about my body and my disability in any traditional means, and turned to poetry, which is where I always turn when I need to voice things that are heavy with emotion and less concrete than the normal ways in which I communicate. In poetry, I found that I was able to process some of the sadness and confusion I was having, celebrate the ways I was learning to communicate with my body, and explain to others what I was going through.
 
It is because of the profound experience I personally had with writing about my disability that I decided I wanted to offer the class “Not Enough Spoons: Writing about Disability and Chronic Illness.” The spoon theory (more info here) is something that many disabled or sick folks mention, saying “I don’t have enough spoons to do that activity today,” or “I need to conserve my spoons because I know tomorrow is going to be hard.” Spoons are, for us, just another way of talking about the energy it takes for us to go through our daily lives while sick or disabled. What I found personally, is that writing about my illness helped me with my spoons in many ways! I helped me to be better in touch with myself and my body so I could regulate my spoons better, it helped me explain my spoons to others and why I may have to cancel plans or why I may be tired more often, and because of the emotional value of the writing, it helped me to even gain a spoon or two! I wanted to share this experience with others!
 
The class “Not Enough Spoons” is geared both to those who are disabled or have chronic illness themselves, but also to those who work with individuals with disability or illness. The class will have two “tracks” of writing exercises. I am thrilled to be offering this class and I hope that through it many others can experience the transformative experience of writing about their bodies!
 
Visiting Hours are Over
by Angie River

Last night I dreamt I went to visit you in a sterile hospital room,
white and steel.
You lay in bed and I watched you, touching twitching eyelids,
holding hands that trembled as you slept.

In my dream I looked at you with love, longing for you to wake and smile
at me, rise from the bed and walk into the world.
Instead I woke, breathing through pain,
feeling spasms ripple from unknown places and darkness
creep into the corners of my mind.

I woke up angry, blaming you for my inability to work, to fold clothes,
to bake cookies, to pick up my child.
I blamed you for sweat pants and dark-circled eyes, for numbers
that climb with each step on the scale. I blamed you for hours
curled on the couch, for late-night sobbing in the bathroom.
But really, you have been holding me through all of this,
just trying to keep me together.

My therapist said, “Angie, the body does not lie.
Your body is screaming.”

I wish I could read between the lines of whimpers and tremors,
hear you over the static of neurons firing,
interpret your flailing language.

You pull words from my grasp, replacing them with stutters,
empty holes where language once was.
You reach over and shake me, pull my eyes back into my head
begging me to see your secrets hidden there.
You ache and cry with crippling pain,
and still I cannot translate what you are saying.

Together we dream of dancing.
You remember extended limbs, thigh muscles tight, toes pointed,
arms circling ‘round yourself before flinging out to embrace the world.
I remember exhileration, warm sweat on skin,
looking in my spouse’s eyes and laughing.

Together we repeat the words,
“We will get through this.”

Together we repeat the words,
“We are strong.”

Together we dance in new ways,
limps jumping and head nodding to music only we hear.

You are not someone I can visit between the hours of nine and five,
bringing flowers and cookies.
I cannot come and go as I please, leaving your side to go home to my life.

This is my life.

I am within you and you hold me, and we both are here,
in light and dark.
You are here, trying to make me understand,
trying to be heard.
I am here trying to hold on to hope and possibility
trying to be heard.

You ask me to listen,
and I ask you to listen.
You say, “one day we will dance again,”
and I promise I will not be
just a visitor in my own body.


 

IMG_2158-300x225Angie River is an educator, activist, and performance artist. She also has chronic migraines, fibromyalgia, chronic fatigue, PTSD, and a handful of other things which impact the ways in which she moves through the world. Angie has discovered that writing helps her to process the things her body is doing and the emotions she experiences. She is currently in the process of writing a series of poems based on her medical bills, as well as taking a series of chronic illness self­-portraits. She will be presenting in June at The Body Love Conference in Tucson, Arizona on the power of telling our stories, as well as on disability and performance.

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