storyrainthejournal: (colette'shandw/cat)
In a recent conversation with my sister, an artist who likes to read about artists' lives, I learned that Paul Klee, one of the few modernists whose art I really love, had (and died of complications associated with) scleroderma, the same autoimmune disease I have.

On Paul Klee and his illness - During 1940, the year Klee died of heart failure from severe scleroderma at the age of 60, he created 366 works of art. Seventy-three years later, his art continues to inspire admirers, influencing not only visual artists, but also contemporary musicians all over the world, with its vibrant sense of rhythm, movement, imagination, and emotion.

I do love his art:



Reading about this is...comforting? Interesting? Something. Part of trying to come to terms with some stuff, I guess.

Things are physically challenging right now; my eyes, fingers, lungs, digestive system, and musculo-skeleture system are all adversely, and variously painfully, affected by the scleroderma. I'm tired most of the time and it's hard keeping up with dayjob, writing, the devoir of life, and self care enough to keep functional--and I still want and need to have something left over for doing fun things, spending time with friends.

I wonder about the next twenty years, and there is a lot of fear and denial and 'I just want to curl up in a ball and cry,' along with frustration--I still have a lot of writing I need and want to do, places I want to experience, people I want to spend time with. I still love and want to live my life and create art and beauty in the world.

A friend who also has serious autoimmune disease challenges talked about how people often say, "You look great, much improved," or words to that effect--and they're so hopeful that this is really the case. A lot of the time it's not; autoimmune diseases don't always show, and one makes efforts to be presentable, to appear well. And you don't want to say, um, nope, sorry--it's so disappointing and awkward.

I find myself thinking, gee, this writing career thing that I've been at for several decades better take off soon, I don't know how much more time I really have. Which is always the case, actually, for all of us, but hammered home on a daily basis by my tiring and unhappy body.

Here's Paul Klee with his wife and a cat.

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