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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Featured Member: Jessica VanWoerkom


DINET member name:  Jessica van Woerkom
Jessica's hometown:  Tucson, AZ
Diagnosis:  Generalized dysautonomia (not related to POTS, MCAD)JessicaVanWoerkom_Bio.jpg.b3688069e8179439dab81c9cb8567269.jpg
Website:  Van Woerkom Studios  http://www.jessicavanwoerkom.com 
Facebook:  https://www.facebook.com/vandubstudios/
Twitter:  https://twitter.com/vandubstudiosInstagram: https://www.instagram.com/jessicavanwoerkom/

Jessica's story...

I was officially diagnosed with dysautonomia in 2017 after 4 years of suffering from extreme symptoms. Symptoms severe enough that I was bedridden for 6 months during that time.  I presented with classic symptoms that began after I had a bad case of the flu. Before that, I was healthy, energetic and athletic.

I have generalized dysautonomia; dysautonomia that is not associated with POTS or MCAD.  Shortly after first becoming ill, I was properly diagnosed with unilateral vestibular hypofunction, UVH*.  For two years my doctors attributed some symptoms to UVH and wrote off the rest of my symptoms to hysteria.  They didn’t take my symptoms seriously for far too long. I am still undergoing testing to determine what is triggering my episodes but I finally have a team of good doctors on my side and I am beginning to feel better.

I have spent so much time feeling unwell and unable to maintain the active lifestyle that I used to have.  I turned to my artwork because I can do most of it in bed or while sitting in my studio. Also, I have been able to work on much larger projects that involve a massive amount of prep work and time. I work primarily with found or recycled items for two reasons. 1: that's what I can afford. 2: as a culture, we throw away too many items that are perfectly suited for other uses if we just took the time. In this way, it feels like the way the healthcare community treats people with dysautonomia, too easy and eager to throw away the patient instead of looking for the cause of the problem.



I am grateful for my illness as it has given me the time to create these works. It is a double-edged sword.


This piece, called “Shifted” is a good example of a piece that may have been difficult for me to do if I didn’t have so much timeShifted by Jessica VanWoerkom to fill.  This piece took a year and I was able to put the individual elements together from my couch. This piece is inspired by the idea that you may have the same day, every day and feel like it’s a wasted life (nothing accomplished or experienced).  Until you look at the overall composition, the whole (of your life). It really is a beautiful thing even if each piece of it looks unremarkably the same to you.  Shifted was presented at the 2015 Tucson Sculpture Festival.JessicaVanWoerkom_art1.thumb.jpg.713b9f3e400c60874108254a3876e550.jpg

I just finished the red, black and white piece at right. This piece is about how everything breaks down over time, and how that division can feel detrimental.  But like the previous piece,, when you look at the whole event there can be beauty in it.


This is a piece that I am currently working on (silver & black image at left).  It is about trying to fill the center of my cells with beauty. Made from recycled receipt cartridgesJessica VanWoerkom that have been cut into pieces and cast with resin on the center. I am not finished with it yet but would like it to be very large. Like a ceiling feature that undulates overhead like a soft blanket.

Editor’s note about Jessica:  Jessica was interviewed by the Sonaran Arts Network.  The interview discusses Jessica’s choices in materials and how she creates her work.  There are some great photos and very interesting descriptions of her designs. 


Sonaran Interview:



“I like the idea that what was once so quickly discarded can be transformed into a thing of beauty.”

A wonderful thought for all of us in the dysautonomia community who feel discarded or less useful than we once were. Thank you, Jessica, for the reminder.

If you would like to see more of Jessica's work, including architectural design work such as the SuperAdobe Earth Bag Home she designed, please visit her website.



*UVH is defined as a malfunction of the vestibular system in the ear causing the balance system to malfunction, source: http://www.neuropt.org/docs/vsig-english-pt-fact-sheets/unilateral-vestibular-hypofunction.pdf?sfvrsn=2

Edited by edriscoll

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