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Chapter Four Liminality One of the unexpected outcomes of Rosa’s lupus is that her husband Lucho and I have become much better friends. He and I met over twenty years ago when I was in Ecuador for the first time, and at the start we were somewhat wary of one another. I knew Rosa for several weeks before I met Lucho, since he was a long-distance bus driver and was often gone for days at a time. Before I met him, Rosa had told me that I would surely like him because, as she explained, he had a great sense of humor. As it turned out, he did make plenty of jokes—I just did not find them very funny, and, worse, I was often offended by them. Lucho’s sense of humor revolved around telling what I considered to be sexist jokes about his marital infidelity or making pointed barbs about the bad behavior of the “rich” American tourists that he saw in his job. I was never quite sure if his remarks were meant to make him look more masculine or me more ridiculous . For the most part, his “jokes” left me very uncomfortable, and I limited my contact with him. It took many months but eventually I came to a fuller understanding of what motivated Lucho’s verbal jousting, and I came to see that he had no clue what to make of me in those early days. Indeed, I realized that I probably made him just as uncomfortable as he made me. In Lucho’s world there is no cultural model for how a poor man should interact in his own home with a young, female representative of a hegemonic global force (the United States). In his obvious discomfort around me, Lucho attempted to assert what he saw as a strong male identity. Over the years as I have become integrated into the family through godparent relationships and have a clearly defined status in the family, our ease with one another has improved. His jokes today are mostly self-deprecating, and I greatly enjoy my conversations with him. When he does tease me now, I know it is with cariño (“affection”), and I never 58 | Living with Lupus take offense. Moreover, I have learned to appreciate Lucho’s hard-working nature and his dedication to his family. When Lucho immigrated to New York we began talking on the phone periodically , and for the first time, he and I developed a relationship that was unmediated by Rosa. Moreover, in recent years as the family has been battered by health crises, Lucho and I have shared a common sense of helplessness because we were both so far away during the worst of it. We called one another more frequently when Rosa was sick to share news and to talk about what was happening, and we now have a relationship that is warm and friendly and based on shared confidences. In contrast to Lucho, however, I have been able to easily travel back and forth to Ecuador from the United States, and he counts on my periodic first-hand reports about his family. I have had to explain countless times to Lucho what I know about lupus, and we return periodically to a discussion of whether Rosa still has the disease. He grew up poor in the countryside where people were more or less healthy until they got sick, or old and sick, and died. The idea that someone could be stricken with illness in mid-life and then continue to live for decades with an illness that waxes and wanes was difficult for Lucho to fully understand. Rosa too has difficulty with the concept of lifelong chronicity. Once she became symptom-free, she frequently made suggestions that she did not believe that she still had lupus. In fact, when I last visited her, she reported to me that her doctor had told her that since she had done so well for so long, it was likely that she never had lupus in the first place. I was really puzzled by that assertion since it seemed so clearly obvious that she had lupus and that the treatments for lupus had made her better. Why, I wondered, would her doctor say something that was impossible to verify and potentially very dangerous for Rosa, as she might assume that she has no further need for medications or medical follow-up? As it turns out, Rosa had gotten it...

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