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How poetry can empower people living with chronic illness

For Camisha Jones, the managing director of Washington, D.C.-based poetry organization Split This Rock, poetry helped give voice to the experience of chronic illness.

Jones first ventured into the spoken word community in 2010 at a writing workshop at Slam Richmond in Richmond, Virginia. That community helped her develop a poetic voice, and with its encouragement she began performing, she said.

The poem “Ode to a Chronically Ill Body” developed slowly over time as Jones dealt with a difficult period of fibromyalgia. “The pain was invisible and so it felt like I was carrying this burden that no one really understood,” she wrote in an email to the NewsHour.

Fibromyalgia, a musculoskeletal condition that has been called an “invisible disability,” causes chronic pain, fatigue and psychological distress; 5 million people in the U.S. live with the fibromyalgia and its origins are unknown. The majority of people with the condition are women, and adults who have it are 3.4 more likely to develop depression, according to the Centers for Disease Control and Prevention.

Jones’ experience with fibromyalgia made her question and rethink the ability of language to express pain. “Even when I told people I was hurting, words seemed so insufficient to explain how much pain I was pushing through each day. I felt isolated and frustrated by the lack of language for what I wanted to express,” she said.

Finding that language is an important step in empowering poets who live with chronic illness, she said. “In a world that champions fast-paced productivity, people who live with chronic illness can feel stigmatized,” she said. “Poetry helps alleviate that stigma by providing a medium for people to speak out unashamed about chronic illness and for those who hear those poems to deepen their awareness.”

Jones said that open mics, readings and calls for submissions on the body and chronic illness can help poets with disabilities speak out. More grants and funding opportunities for these poets would also help amplify their voices, she said.

Ode to a Chronically Ill Body
This bodyllllis one long moan

My feetlllllllllllllllla landscape of mines
My legslllllllllllllllltwo full pails of water I spill
llllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllat the weight of
My backllllllllllllllwhere the sharpest knives are kept
My handslllllllllllla scatter of matcheslllllready to spark into flame

This bodylllllllis lightning
lllllStrikes the same placellllllmore than twice

This bodylllllllis a fistllllllllllllllllllllllllllpounding its own hand
This bodylllllllcrumples like paper
lllllllllllI crumplellllllike paperlllllllllllbecause of this body
This bodyllllllljust wantslllllllland wantsllllllllland wants
This body
lllllllllllllSays stop
lllSays go
lllllllllllllSays stop
lllSays run
lllllllllllllSays stop
lllllllllllllSays STOP
This body islllllllla stubborn traffic lightlllllllllllstuck on red
This body will
lllllllllllllllhave what it wantslllllllOr it is
lllllllllllllllllllllllllllllblasphemouslllllllltantrum down every grocery store aisle
This bodyllllllllllllmakes an embarrassmentllllllof me
This body is
llllllan embarrassment
llllllllllllllThen pleasurelllllllllllllllThen hunger
lllllllllllllllllllllllllllThen defenderlllllllllllllThen defendant
llllllllllllllThen carriage
lllllllllllllllllllllllllllThen coffin
This body isllllllllllTupperware with its secretsllllllllsealed tight
This bodylllllllllllllscrapeslllllllllllllland falls
Then gets back upllllllllagainlllllland again
llllllllllllllllIt’s all I gotllllllto get back up withlllllllllagain
This bodylllllllllis an oceanlllllllllof oil spillllllllllall over me.

Camisha Jones is Managing Director at Split This Rock, a national non-profit focused on socially engaged poetry. A 2013 National Poetry Slam participant, her poems can be found or are forthcoming in “Rogue Agent,” “pluck!,” and “The Quarry,” Split This Rock’s poetry database. She is also published in “Let’s Get Real: What People of Color Can’t Say and Whites Won’t Ask about Racism” and “Class Lives: Stories from Across Our Economic Divide.”

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