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 seriously 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 has 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, although I am quite limited in standing on land I can stand for hours if chest deep in the low gravity environment of water. I time each day in water, happily exercising my muscles and enjoying a 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 later painted upon. 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.