July 14, 2015

I was working on Gilberto’s narrative last night. I’m profiling his story in my 3rd chapter with 5 others to help explain how skin color across the Brazilian phenotypic continuum influences one’s relationship with their sickle cell disease and the policy around it. I wanted to make sure I was spelling his last name right and my surveys were elsewhere and I didn’t feel like listening to the audio so I went to Facebook. I typed in his name and confirmed what I thought it was and began to scroll down his page. “Why were people referring to him in past tense?” I thought. I kept scrolling when it hit me. “Wait. Did Gilberto die?!?” I knew the answer. Gilberto died March 21, 2015. So long ago.

When I came back from Brazil for my fieldwork I needed to create distance between this adopted country and myself. It was hard enough coming back in September, only to return again for a meeting in November. I missed being so close to the sea. I missed that people would burst into spontaneous song at any given location (bus stop, lunch table, building lobbies). Most of all, I missed touch. Brazilians love to make tactile contact and though at first I was appalled, by the end of my fieldwork it was a comfort and what I missed the most when I returned to the States. I craved touch. In order to help create this distance, I stopped regularly checking my research Facebook profile. The inundation of information about sickle cell disease and the livelihoods of Brazilian friends and people in the community was too much and it was hard to not treat it as data once I entered dissertating mode. So I stayed away. Making only very specific and short visits.

Gilberto died so long ago and I didn’t know. I felt awful. Not only because I didn’t know, but how it must have looked when I didn’t make any comments after it happened on Facebook. These things, I have learned, are very important and judged. That aside, I was heartbroken. When I did return to Rio in November for an international SCD meeting, I was finally able to interview him. During my time in Rio, I tried four different times. Each time being thwarted by communication and transportation. When we finally met, we sat at the back of the library in HemoRio with his wife Silvia not far—feet away sitting at another table…listening and sometimes providing information from afar to fill the gaps that had been made by Gilberto in his recounting.

As soon as I learned that he passed, I sent whatapp messages and emails to people stating how sorry I was for this loss and offering any assistance I could to his family, especially Silvia. How devastating for her to lose the man whose eyes sparkled every time he mentioned her name. He was not always well-liked in the SCD community, loud and obstinate about the rights for people living with the disorder, and as a result he made many people uncomfortable. But he was also fiercely loved and respected as the first president of the national sickle cell association for Brazil and just as someone in the community. I had seen him stand up and make his point clear in many venues-he had to use a cane to do so. He was frail and his clothes hung off him when we met. You could tell that he was not well, but his love for Silvia was evident and fortifying.  She was always by his side.

“Oh, Melissa. Did you not hear what happened to Silvia?” a friend asked in a text message in response to my inquiries about Gilberto. Naively, I wondered what could have happened to her despite knowing that she too had sickle cell disease and death was not a surprising event when one was steeped in the SCD community. Silvia had complications from a surgery and passed away one month earlier than Gilberto did on February 14. The breath was knocked out of me. Despite the comfort I felt that they were together, the news of both of them passing ripped me ragged. I’ve been weeping a lot since I learned. My friend continued over text about how sorry she was to deliver such sad news. And offered me um abração (one big hug). “A Brazilian hug my friend. A warm one. As you know we touch. We like to touch.” I wish when I learned about Gilberto and Silvia that I was in Brazil to be touched.

While I was still in the field, I learned that one of my first narrators, Debora, had died. She was 23 and as we sat to have a snack together in Salvador, we talked about her coming to the states, only in English to help her practice. She was optimistic and accepting of the challenges that SCD provided, but never daunted. Learning of her passing was rough, but Gilberto and Silvia, despite how old they were and how sick they were—has really affected me. Perhaps because I am so steeped into the lives of my narrators right now and the theme that emerges across many of the interviews is death. Perhaps because I am plagued with my own health issues at the moment. When you have a chronic disease, it’s hard to not think about your own mortality and since I’ve come back the thoughts have been intensified. Having SCD, the stakes are physically and emotionally real for me in ways I have a hard time describing and they have been for a very long time. No one really can understand it. I know how healthy I look, seem, appear and no one associates illness with me. But I cannot explain how hard it is to be this immersed in one’s own disease—to write about it, listen about it, meet about it, analyze it… it’s no wonder I’ve often felt paralyzed during this process. But I know it’s bigger than me, so I take pauses, try to be kind to myself, and write.

I write to share Gilberto’s and others stories. I am so grateful for him, for Silvia, for Debora for all those who have passed away whose names I do not know. I have been accused of being too close to the research and the narrators, that in my own positionality of someone living with SCD, I will produce a biased product that frames other people living with SCD in a certain light. I just think they deserve some light. That their voices deserve to be heard, no matter the politics. I write this today as a therapeutic outlet to help me with my grief. And to show honor to Gilberto and Silvia who fought for their rights as people living with SCD to the very end. May they rest in peace.