I just spent five days in Mexico City (I know. Seriously though, the trips will be winding down soon). My friend Sheila and I saw a lot of art. Of course this means that we went to Casa Azul, the home of Frida Kahlo and Diego Rivera.
Frida Kahlo has become such a ubiquitous art presence that I don’t know if I can say anything at all new about her. But her work is sublime, and she created it while in intense physical pain. I can relate to that.
I’m not going to say that my situation compares equally to Frida’s. She survived polio; she was impaled on a piece of metal when she was eighteen; she had her leg amputated due to gangrene later in life. Any one of those things would be agonizing to endure. She survived all three, and crammed more vibrant life into her short years on this planet than most of us ever will.
I contracted juvenile rheumatoid arthritis (JRA) when I was fifteen years old. I am reluctant to write about it because I sometimes think it will affect my ability to get employment, or to get insurance. Back in my twenties, when I was trying to buy my own coverage, an agent physically backed away from me when I mentioned my condition. Like it was catching. “Oh no,” he said, “that’s like cancer or AIDS. We can’t insure you.” I also tried to buy coverage through an artist coalition plan. I was denied with no explanation. Getting independent coverage was okay the past couple years, but it is becoming difficult again. That’s another messed up topic for another time.
But anyway. I have known pain and physical limitation since my mid-teens. The carefree part of my youth was very brief. In the exhibit of Frida’s wardrobe at Casa Azul, the person who wrote the label text talked about how Frida’s chosen Tehuana style of dress focused on her upper body, drawing attention away from her weakened legs. This observation struck me, because I do that too. I am fiercely protective of my lower body. If my knees are threatened, I am capable of screaming and thrashing like a wild animal. I am normally pretty cautious and even-keeled. But I am also holding a lot of pent up something.
High school was rough after I contracted JRA. I needed to have fluid regularly drained from my knees, and was subsequently on crutches a lot. I fatigued easily. The onset period of the disease is acute, and sometimes even my ribs were affected, so it hurt even to breathe. I would occasionally scream myself to sleep. Scream until I was exhausted. My mother would sit by my bed and hold my hand.
I still had dreams for my future, though. When I was starting to think about college, my guidance counselor advised me to stick close to home, and not to challenge myself too much. “That big university? So much walking? You don’t want to do that.” That was the first time I wanted to tell an adult to go to hell. I was far too timid at that age to be so outspoken; but I did ignore her lousy advice.
I went to high school in a strongly evangelical Christian suburb of Chicago. I considered myself a born again Christian for a while. Every year, I would draw a huge fantastical allegorical piece for the annual student art show. These pieces were crammed full of weird creatures and suffering humans, and I made up all sorts of completely random references to Bible verses. I even made a legend of what all the images meant for the piece in my senior show, and hung it next to my work. I bet it was every bit as convoluted and tedious as it sounds to me now.
Because of this tedious allegorical habit, I was profiled in the local paper my senior year. The reporter was really interested in my “suffering,” and I was happy to oblige because it was always on my mind. I remember that the headline of the piece was “Graduate Prays for Dry Weather.” Probably weird stuff like that is another reason I hesitate to talk about JRA and how it influences my work. But I have to admit that it does.
I think that knowing prolonged pain makes you introspective in a very particular way. You also need to be keenly observant of the outside world, because you face threats that others may not comprehend. You plan things around your pain. You think about cause and effect a lot. You have a strong desire to believe that things can get better.
At this point, pain has integrated itself into my life both by attenuation and habit. If it were to all suddenly vanish, it would be weird. I might think I was Super Woman. I might just fall over, because I wouldn’t know how to hold myself together without all that tense caution. I’d feel like a jellyfish or a butterfly. Frantic and fluid.
I sometimes wonder whether I’m actually grateful for the pain. Not sure about that yet. But I do know that it is what I have to work with.