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2018 Rare Artist Contest Brings Awareness to Dysautonomia by Melissa Milton

Missy M

Editor's Note:  Melissa Milton is a DINET volunteer who lends her hand to help wherever it is needed, most often on the forum.  Melissa has also written articles for this newsletter, sharing her artistic view of the world with all of us.  Melissa came to DINET as part of our Featured Members program and more of her art and her story can be seen on her featured page.

Melissa Milton feels honored to be among the 2018 Rare Artist Contest Awardees. The annual Rare Artist Contest is sponsored by the EveryLife Foundation.  The purpose of the contest is to raise awareness for rare diseases, as they are often overlooked when it comes to medical research, medical provider knowledge, etc. Melissa’s rare disease is Dysautonomia.

Each awardee will have a chance to share their story and display their art piece at the Rare Artist Reception, during Rare Disease Week on Capitol Hill in February. One of Melissa’s State Senators, Senator Boozman, will be among those attending.

MissyMilton_RareArtist.thumb.jpeg.07c94e265a644c09252b69ca277563a9.jpegMelissa’s art statement that will be displayed with her art is intended to raise awareness about Dysautonomia, raise awareness about how water therapy can be beneficial for someone who has it and to perhaps provide some hope for those who face their own life challenges. Melissa’s statement (below) will accompany her art piece, “Flora and Fauna” (shown at left).

“My rare disease, Dysautonomia, is a neurological disorder which causes faulty instructions to be sent to the body for many “automatic” functions. It particularly sends incorrect instructions to the circulatory system.

Like many of us with Dysautonomia, my circulatory system no longer supports me correctly. I am now limited in how long I can stand up (5 minutes for me) and in how long I can sit up (2-3 hours). Other than that, I have to lie down to keep my blood pressure from dropping so low I pass out, or from spiking so high, I’m at risk for stroke. As careful as I am, I still randomly pass out from low blood pressure 3-6 times a week. I am homebound and no longer drive.

I became severely disabled in 2016. I took up painting in 2017 for something to do during the long hours I am forced to lie down during the day. Painting soon took on a life of its own and had become a joyful form of self-expression for me. It has also led to me making new friends (other artists) despite being homebound. It has proven to me that; indeed, one door may close on your Life, but if you search hard for a positive new door then you’ll likely find it.

Like many who have Dysautonomia, I am quite limited in standing on land although I can stand for hours if chest deep in the low gravity environment of water. I spend time each day in the water, happily exercising my muscles and enjoying the freedom of movement I no longer possess on land. My physical therapy time spent in water has inspired most of my artwork. Much of it has a recurring theme of a person, object, or animal weightlessly gliding about.

Some of my art pieces are underwater photographs I have taken in my therapy pool and then turned into paintings later on.  This art piece, “Flora & Fauna,” is one of them. My daughter and I sat in the bottom of my therapy pool while I took a photograph of her releasing the silk roses. To me, it symbolizes one of those moments when Life requires you to let go of something you love, and you have no choice but to watch it drift away from you. Like the girl in the painting, we have to learn to let go of the roses. Otherwise, our hands won’t be free to hold on to the next good things coming our way. For those of us with rare diseases, those roses we have to let go of may be the life we had back when our bodies were healthy.”

Melissa encourages other people with Dysautonomia who create art to enter the 2019 Rare Artist contest. It’s a lot of fun, and you’ll be helping raise awareness for Dysautonomia. Entries for it begin in June 2019. You may enter through the “Rare Artist.org” Page on Facebook.  

You may view artwork from this year’s and prior year’s Rare Artist Contest by visiting their website: https://www.rareartist.org/

DINET congratulates Melissa and all the other rare disease warriors who participated in this fantastic contest.  If you have participated in something to bring awareness to Dysautonomia disorders, please let us know by emailing webmaster@dinet.org   Please include the words "dysautonomia awareness" in the subject line. 

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