Wednesday 22 October 2014

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

(Cassandra, Evelyn De Morgan,1898)

Today's submission for Dysautonomia Through the Arts comes from Stefani, with her beautiful song Upright. Her inclusion of the Cassandra myth is perfect within the context of illness. 

I am a musician, a wife, a professor, a lover of cats, a recovering academic, and a chocolate fiend. I was diagnosed with POTS in 2011 and am still on the long road to diagnosis, garnering knowledge and hoping to share with others what I have learned. When I'm not lying prone on my couch, I teach English at a community college, I write music, I play video games with my husband, I blog and plan a book about my health adventures, and I plot and scheme for the next chocolate fix. 

This is a song I wrote about a year ago while I was working on other material for the album I hope to someday record. This one was written mostly as an improvisation and has changed little since. I have been battling with POTS and Dysautonomia for almost four years and some other undiagnosed neurological awfulness that is taking away my ability to walk and this song was a little a reminder to myself that I am strong despite these battles. It is a reminder that despite the limitations of my body, my mind is boundless. In my pre-sick life, I used to be a gymnast, an avid hiker, and was working on a PhD, but I remember what it’s like to soar in the air and climb to the top of mountains. This song is a reminder that I still have those memories and the fierceness that helped me achieve those things has never washed away. I am still powerful, creative, intelligent, and strong. This illness takes many things, but it cannot take any of those away from me.

I have identified with the Cassandra myth since chronic illness entered my life. She was able to foretell the future but was cursed to never be believed. Since being told it is “all in your head” is so universal for those with dysautonomia at some stage in their diagnosis, I like to think that there is some justice in the world, and I think Cassandra achieved this when everything she foretold became true. I like to think her struggle is parallel to the universal battles of dysautonomia, so I claimed her as a figure of strength in this song. Although this is a raw, unedited version, I hope that it is still palatable and you enjoy it!

So strong, so pure
So I’m not even sure I know where this goes
But there’s something here, in my hands
Let this breathe or let this be a body that can undo me
So still, so sure
If she foretells is she blamed
Or let her speak just once again.
Chorus: But you’ll see, I fly so easily
So fearless, so fierce
If you pierce this chest, does it beat?
A body that can undo me
So ready, for more
If she foretells is she blamed
Or let her speak just once again
Chorus: But you’ll see, I fly so easily

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 $3,200, keep donating and hopefully we can reach $10,000.


  1. I would love a link to Stephanie's blog!

    1. Here you go C.M.


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

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