Thursday 2 October 2014

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 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:
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.


  1. That's beautiful Suzanne, thanks so much for sharing x

  2. Oh wow! I woke up to kill my cats this morning (lucky for them I am too tired and can't catch them). I just saw this and it made my day. Thanks for publishing this but more importantly, thanks for giving us a platform to educate and inform. <3

  3. Perfectly stated. Thanks for sharing and spreading awareness of our reality of dysautonomia (even though we look so fabulous-haha).


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.