I am 26 years old and for the past seven years I have been mostly housebound/bedridden with a complex chronic illness known as myalgic encephalomyelitis, aka M.E./CFS.
Before my illness I was a dancer, student, actor, and general performance junkie. I never kept still, and I thrived on movement of all kinds. Slowly, this was stripped away, and as the illness progressed, my life became more and more reduced. By the end of 2009 I was unable to walk even a few blocks. As someone who had relied on my physicality, being housebound was beyond foreign to me. The ways in which I had defined myself were no longer available, and along with the frustration, and confusion of the illness, I felt like I had lost myself. It took some time, and adjustments, but slowly I discovered a new me, and a new way of existing within the confines of my home. I began teaching myself and experimenting with composing music, poetry, drawing, and painting - all of which the “healthy” me never would have dreamed of trying.
Art has now become the way I express myself and my emotions. It gives me a sense of purpose, and allows me to communicate with the world from my bed. The truth is though, much of my time is spent in a state of ‘waiting’, and it’s through this silence and stillness that I have learned patience. Patience with an hour...with a day... with a year... and with myself. On my “better” days I love improvising and creating, and I live for the moments when my energy allows me to completely immerse myself in a project. It’s in these slivers of time that I am able to lose myself in almost the same bliss I once felt on stage.
While my illness does not define me, it certainly does shape the way I work.
I am inherently the kind of person who once I start something I don’t stop until I’m finished. With M.E. this is not an option. I have had to retrain myself to stop mid-flow, put everything aside, and leave something unfinished. Sometimes I am able to come back and continue within a few days, other times I will not have an energy window for months. While this can be painstakingly slow, it has really helped me grow as an artist. Allowing projects to marinate in my mind, and coming back to them with fresh eyes, has been quite a learning experience.
Because I am self taught, and started out with zero expectations, I have been able to learn at my own pace without any pressure for perfection. My goal is never accuracy or precision, but to convey an emotion. A personal motto I have is “embrace the mistake” - when something doesn't go as planned, I don’t start over, I follow it. This is incredibly helpful both because I don’t have the energy to continually start things from scratch, and often my hand coordination will be off due to tremors, cognitive issues, etc. While working around the many obstacles my illness presents can be frustrating, it is the reason I discovered the world of art, and for that I am infinitely grateful.