I became symptomatic at age sixteen; I was diagnosed at twenty-seven, and I have since spent the last ten years learning how to navigate a relationship with my illness.
That it is a relationship, or that it can be seen in that light, is a fairly new concept for me; in the early years following diagnosis, I approached Lupus more as a battle to be fought, and initially this was helpful to me (it’s far better to fight, than it is to simply give up). But recently, I’ve been learning how to engage this facet of my life in a more productive manner.
I continue to be surprised at how helpful it actually is --helpful for me and for those around me-- to actively engage this subject: It is helpful to paint about my illness, write about it, talk about it, create conversations about all the ways this illness influences my life and my choices on every level.
It took me a long time to see the extent to which my relationships with my illness reflected my relationships with myself, right down to the avoidance, the anger, and the resentment. I realized then, that I had a lot more to work on than just the physical aspects of chronic illness: I needed to do more work on myself, as a person --and along the way I discovered that doing this kind of work, to better myself emotionally, resulted in my doing better, physically. Intrigued, I continued along these lines, and have since continued to improve.
Through my work (painting, writing, assemblage, and collaborations), I began to explore the ways my illness was re-shaping, and forcing me to more closely examine, all of my relationships --with my body, within my mind, and also, my relationships with others.
My relationship with my body
‘The Lines Unread’ belongs to my Silence series. This body of work examines the ongoing transformations in my life, and my work, as a result of living with Lupus and Fibromyalgia.
The works in this series are all mixed-media; inclusions of graphite and ink are particular allusions to loss of function in my hands. Before my illness, pencil and pen were my tools of choice; as my illness progressed, use of such fine instruments became more difficult and painful.
At that time, I let go of keeping a daily sketchbook and handwritten journal, and turned instead to more abbreviated art forms, which required less use of my hands --abstract sketches in crayon, and spoken word --performance poetry.
In addition to the figurative sketches in ink and pencil, many of the works in this series have my poetry written in pencil, ink, or both, beneath or between the layers of acrylic gesso and paint. ‘The Lines Unread’ is the title of my poem, within the painting, bearing the same name.
My relationship with my mind
'‘To Anger’ is part of my Dine-in,Take-out series. The origins of this series reside in a loose collection of abstract crayon sketches, created in 2004 and 05 --the time when my function was most impaired, and sketching often required controlling a single crayon with both hands. Economy of line was critical,
Lupus and Fibromyalgia forced me to stop --physically and mentally-- for the first time, in my life. Before chronic illness, I had not realized the extent to which I was being driven, by my own pain, anger, and avoidance. The crayon sketches helped me to work through some of that. In 2011, recreating the crayon sketches into paintings helped me to work through a bit more. Writing about this series, at the present, I find myself doing that work, yet again.
My relationships with others
‘The Fruits of Self-Compassion’ belongs to my ongoing narrative series, Reaching. Unlike the works of previous series, which look to the past, Reaching is firmly established in the present, with an eye to the future. The characters in this series express forward motion --reaching for that which is higher, within themselves and in their environments.
As visual elements, the exaggerated shapes and sizes of the hands in these works communicate the complicated relationship I have with my own hands: I no longer take my hands for granted.
I am keenly aware, day-to-day, of what my hands can do --I find myself carefully planning each day’s activities, and routinely mapping out entire weeks or even months in advance; I do this not only to make the best use of my hands, but also to allow for energy levels, mental acuity, and pain management.
There was a time when I didn’t think I’d ever regain function, especially not to this extent. I am deeply grateful for this, and always mindful of what it means, to have hands, and to be able to use them.
In addition to my ongoing solo projects in acrylics and assemblage, I've begun a series of collaborative concept photography projects, with fellow artists in various fields who also seek to tackle painful personal issues through their work.
The full series guides our viewers through eight different landscapes, breaking down the various stages of grief into visual elements, and creating a narrative of courageous recovery.
Currently on exhibit, are photographs from two of our eight separate sets: Efface, a dance terminology ('shadowed'), describes the frightening pain and guilt often referred to as the second stage of seven; Epaulement ('shouldering') explores the fourth stage --heavy feelings of sad reflection, isolation, and depression.
Jen Raven ~ Creative Direction, Concept Artist, Costumes, Properties
Todd Powers ~ Photography and Editing
Ande Castaneda ~ Makeup and Hair Artist
Berlin ~ Dancer / Model