Soraya: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Comfort, Edvard Munch 1907)

Next up on Exploring Dysautonomia through the Arts is Soraya. Soraya's poem, Comfort, explores the conflicts that many of us face when dealing with illness. Truth and comfort. Our need for both changes each day as we and our worlds change. Balancing both can be extremely difficult.

Soraya Ramhormoz is a writer, patient advocate, social justice and science literacy activist.
She writes about her experiences as a patient and as a human being moving through the world with a mysterious debilitating illness. She hopes her excruciatingly honest descriptions of her experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.

In this poem, I tried to deal with the conflicting emotions brought out by the experience of having a chronic illness like Dysautonomia. We need both comfort and truth when dealing with a life-changing experience like Dysautonomia, but what happens when comfort and truth are in conflict? Which do we choose? For me, the answer can shift from moment to moment. I pride myself in my ability to deal with harsh truths, and I value honesty from medical practitioners and my family and friends alike. But having the comfort of denial stripped from me has been a painful, emptying experience.

I wanted to try to capture the emotional shifts we all have in dealing with chronic illness. And I want people to know that it's ok to be both angry when people we trust lie to us in the name of comforting us -and to wish they would lie to us to comfort us once again. We can be angry at the lie, and angry at the loss of the lie at the same time.

Comfort

"It'll be all right."
In the beginning, that's what they say.
You let the words settle into you, comfort you,
like you're supposed to.
Of course, it'll be all right.


You learn it's a lie in slow,


sudden
bursts


You're angry that they lie to you.


You wish they'd stop
They say that to everyone
It doesn't mean anything anymore —to you

Then they stop saying that —to you
They say that to everyone —else
It doesn't mean anything anymore —to them


You're glad —at first—
that they aren't lying
to you —anymore—


But what do you put
there,
where
the lie used to go?

What do you use
to fill the hole —besides the longing
for the lie?

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,300, keep donating and hopefully we can reach $10,000.