Suzanne: Exploring Dysautonomia through the Arts for Dysautonomia Awareness Month 2014.

(A dizzy slightly out of focus hand on the wall, 

is all that keeps me upright some days)

First up for Exploring Dysautonomia Through the Arts is Suzanne. Suzanne uses poetry to examine her experience and it is on a topic to which I can particularly relate. Furniture and wall surfing is how I roll these days. 


My name is Suzanne Hemond. I'm 46 years old and have had NCS* since I was 15 years old although I wasn't diagnosed until I was almost 31. In the past year or so I have also developed POTS*. Clearly, my autonomic nervous system hates me.

The following poem describes a highly symptomatic day of trying to navigate my apartment. If I'm not actually holding on to things, I'm at least touching them in case I need to steady myself. The word 'touch down' is playing on an American football term for scoring a goal. In American football, a touchdown garners the highest points in a game. However, in dysautonomia, touchdown is more of a defeat than a victory because it means we're on the floor or on the bed or laid out in some way. 

I used a pattern of two word quatrains followed by three word quatrains to show how my equilibrium is impacted when I'm dizzy. I wanted the evenness and the unevenness represented because people who don't have autonomic issues often tell those of us who do that we don't look sick. When I'm caroming through my apartment, it doesn't matter how good I look. I still feel dizzy.

Touch

touch wall

touch door

touch table

touch wood

not for luck

but to get

me where I

need to go

touch fan

touch counter

touch couch

touch chair

one hand holding

one hand free

to feel my

way around home

touch handle

touch bed

touch dresser

touch down

but score no

points for this

game not a 

game my life

*(NCS: Neurocardiogenic Syncope; POTS: Postural Orthostatic Tachycardia Syndrome)

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 $2,600, keep donating and hopefully we can reach $10,000.