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Chapter Eight Living with Lupus When I last saw Rosa, she was doing remarkably well. She had moved to the new two-story home that she was still in the process of building, and she enjoyed cooking in her wellequipped kitchen and gardening in the yard. She planted several fruits trees, has a small patch of herbs for cooking and making teas, and has seemingly commandeered every planter and tin can she could find to house a flowering plant. For the first time in her adult life she now lives in a place that is her own. Rosa lives with only two of her children now, her youngest son, who is still in high school, and her middle daughter, Marisol, who graduated from college and works as an accountant. Marisol is completely devoted to her mother and does all she can to ease her burdens. She shares her small paychecks with Rosa, consults with her mother about house-construction decisions , and helps around the house as much as she can. While the upstairs of the house is finished and boasts wooden floors and a tiled kitchen, the downstairs remains a bare shell of a house. Their goal is to live in the bright, sun-warmed rooms upstairs and rent the downstairs as a steady source of income. Lucho remains in New York, for the most part pretty unhappily, so that he can send money home to finish the construction. He is starting to feel trapped in New York. He is getting older and day-labor jobs are becoming harder for him to get, yet he knows that once he returns to Cuenca, he will never be able to earn enough money to complete the work on the house. He becomes frustrated when he sees that his meager earnings do not go much beyond paying the monthly rent in New York. Rosa’s health is so stable now that the sun does not seem to bother her, she no longer limits her diet, and she often fails to see her physician and take her medication. As I described earlier, she even believes on some level that she never really had lupus. While complete remission from lupus is rare, Rosa has 143 | Living with Lupus been symptom free for several years now. The devastation that the disease brought to her family has receded and it now seems more a part of a very sad past, rather than her daily experience. Rosa’s daughters are somewhat concerned about her cavalier attitude about her health. They chide her into seeing her doctor from time to time and quiz her about whether she takes her medications. Alejandra also worries about whether, like Cecilia, she or Marisol will develop lupus one day. Alejandra is always quick to laugh and make fun of herself, and she jokes about her own occasionally overwrought reactions to the smallest ache or fatigue she may experience. She “panics,” she says, immediately thinking that her exhaustion might be the first symptom of lupus. For now, both young women are quite healthy and very busy. Even though lupus no longer plays an obvious role in Rosa’s day-to-day life, her years of illness and her daughter’s death from lupus have permanently altered the ways that she and her children think about and live their lives. Who they are as individuals and as a family has, I believe, been permanently altered by their experiences with lupus. Most obviously, Lucho remains in the United States much longer than he anticipated; they could have saved far more money if they did not have all the medical expenses that Rosa’s and Cecilia’s illnesses brought. Marisol’s education was prolonged, as she took time off to help care for her mother, and the family had to reduce its level of consumption, selling their car, for example, in the wake of Cecilia’s death and the debts her illness created. What is less obvious and much harder to pin down are the ways that Lucho’s absence has combined with Rosa’s and Cecilia’s illnesses to impact family roles and obligations and the subjectivities and identities of the various family members. The experience of watching their mother’s health crisis years ago and of having to find ways to cope with it while their father was away has no doubt shaped the children’s personalities and the relations between them, perhaps in ways that can never really be isolated or known. Marisol has...

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