By TIffany Zimmerman, Deltona, Florida
I don’t think any of my work as an artist really focuses on my having FSHD. I do feel, however, that my art and creativity are among the major things in my life that keep me mentally balanced and uplifted.
One of the hardest things about dealing with FSHD is the unpredictability of my future health. Yet whenever I’m creating something, I’m able to gain a sense of control that I lack elsewhere. My paintings are chaotic and messy, but that’s my choice. My resin work can be unpredictable, and it requires patience, but I’m still creating something beautiful out of nothing. I may not be able to build a stronger body, but these outlets definitely allow me to grow and compensate in other ways.
There’s always some extra thought that goes into creating when you have a disability. I’m in a wheelchair, so I’ve had to adapt how I paint over the years. I have to arrange things a certain way around me so I can reach them. I’m right-handed, but that is my weak hand, so I have to brace my wrist and elbow with my other hand. Slowly, I’ve learned to paint with my left hand as well. Now I can change hands when my right hand becomes fatigued.
When I build dioramas, I use a lot of tools that most people wouldn’t necessarily need. I’ve cut my hands a bunch of times with a rogue knife and burned my fingers with the hot glue gun, but that’s just part of it. For my work with resin, I have to lay out my space so that I’m not constantly knocking stuff over. I also purchase resin in quantities I know I can lift.
Finding happiness can be a struggle when you also have FSHD. Creating art makes me happy, but it doesn’t do the dishes. I only have a certain amount of energy every day, and when it’s gone, it’s gone. On most days, choices are made. The stack of dishes in the sink will tell you what I most often pick.