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.
As part of a capstone project for my MPH program many years ago, I developed a health education program called “Don’t Let the Sickle Stop You.” It was part tongue in cheek, but also a message I thought was important especially for youth who so often take on a fatalistic mentality when growing up with the disease. Somewhere along the line, it became my mantra. Can I take a 3 month assignment abroad? Don’t let the sickle stop you. Can I enjoy a vacation in the North Carolina mountains during the Winter? Don’t let the sickle stop you. Should I quit a good government job with decent insurance and move to Brazil? HA. Don’t let the sickle stop you, Melissa. Despite these decisions (and how fearless I may subsequently look), they were all calculated and not without hiccups. I was hospitalized in Paris for a week with a SCD crisis after getting caught in the rain and cold unprepared. I spent weeks shopping for appropriate winter wear to keep me warm in the mountains. I knew that when I moved to Brazil, I’d be surrounded by medical professionals who specialized in SCD. Calculated, I tell you. The next vacation I dream of is to an island off the coast of Kenya (Lamu). The sickle might stop me with that one. The pre-lim risk analysis suggests medium to high level riskiness given my specialization needs. All of this to say – What a privilege I have to make these risk assessments.
September is Sickle Cell Awareness Month and on the last day of September this year, I’d be remiss to talk about the continued importance of discovery and innovation, public health initiatives, and general awareness for this disease. The paucity of these is alarming. I have lived a life dedicated to sickle cell disease, part of it was written in destiny, my genetic code, but the other part was a choice. A choice to be as involved as possible with making an impact for and with the sickle cell community. It drives the kind of scholar I want to be, the kind of scientist I’ve had the privilege to be, and the kind of activist I hope to continue to be.
I went to my first Sickle Cell Disease Association of America (SCDAA) meeting in 2001. I had just graduated with a biology degree and was working at Morehouse School of Medicine. My supervisor couldn’t attend the meeting and asked me to go in her stead. Off I went to NYC for the first time, to give my first poster presentation, my head and heart full of wonder…having no idea of what was to come. I grew up giving basic science poster presentations and evolved into giving public health plenary addresses at this annual meeting. Like a family member that you love and simultaneously sometimes want to throttle, SCDAA has always been a part of my adult life. This Friday, October 3rd, I’ll accept a National Advocate “Champion” award from SCDAA. 13 years later after my first ever scientific meeting, I can’t describe what it feels to be recognized by the organization that helped grow me up, set me on my path, and affirmed many fears.
This September, I am so full of gratitude. For places like SCDAA and the CDC who continue to make sickle cell disease a priority when the odds are stacked against them in this place where the proverbial pie continues to shrink. For places like Emory, my institutional home where I have been supported through my biology, public health, and now interdisciplinary doctorate programs. For my friends and family who watch me when I think no ones watching, who spend time with me when I’m pre-crisis, during crisis, and post-crisis (pain or otherwise), who skype with me during my many adventures, who lift me up in prayer and warm wishes. My life is so full and I’m so lucky that 8 times out of 10 I don’t let the sickle stop me. And as long as I can, I’ll be fighting to share stories, to raise awareness, to push for funding, so that others can live a life without it stopping them too.
To learn more about SCD visit these places:
I’ve been watching the movement of Beautiful in Every Shade, brainchild from my friend Carlton Mackey, grow from afar this past year. As a collaborator to the umbrella project of 50 Shades of Black, I am invested in the vision of everyone knowing how beautiful they are, no matter the hue or shade. It seems in the United States, now more than ever, that we have to reinforce this concept. During my time in Brazil, I often thought about how the concept needs reinforcing there as well. Both countries have been plagued with issues surrounding colorism. I witnessed the implications of it everyday in Brazil…but I’ll write about that another day.
Instead, I want to share a few images I captured on my final day in the field. It was a full day. A final interview, last minute errands, and a meet up with my friend Dara Braddock, a writer, chef, and educator supreme who was in town to visit. I gave her a Beautiful In Every Shade Tee because as an educator she recognizes how important the movement is and then the below happened. I think she attracted this amazing moment into being. You can’t describe the concept of this shirt more beautifully, than a school bus of Brazilian children who just happen to be on a field trip to the beach and are, of course, in love with the camera and Miss Braddock. Enjoy!
I just wrote this as a status update and I thought…I should put this somewhere. My project is not comparative, but I just can’t ignore how Brazilians find utility in the description of the slave trade when talking about sickle cell.It will forever be interesting to me that even in the most clinical of Brazilian papers characterizing the molecular structure of hemoglobin, you’ll find a sentence like: “Some 2.5-40 million slaves were brought to Brazil from Africa through the slave trade and were distributed in nearly all regions of the country.” A US (scientific) author just never goes there! I did a search on the words “slave” and “sickle” in PubMed and samples from Mexico, Lebanon, Tunisia, Iran, and Trinidad come up. I can’t find one American – and Brazil samples (specifically from the NE) are in relative abundance. #scienceingeopoliticalhistoricalcontext #ishouldwriteablogaboutthis #mydissertationwillthankmelater
I touched on it some in my dissertation proposal and have plans on expanding the thought for the real deal:Brazilian author Lervolino (2011) states: “Originally from Africa and brought to the Americas by the forced immigration of slaves, it is more frequent where the proportion of African descendants is greater (the northeastern region and the States of São Paulo, Rio de Janeiro and Minas Gerais). In these regions, we observe new cases of sickle cell disease in every 1000 births and sickle cell trait carriers in every 27 births. It is estimated that approximately 2500 children are born every year with sickle cell disease in Brazil (49).” Consider a similar description of SCD for the United States by American author Hassell (2010): “The number of individuals with sickle cell disease (SCD) in the U.S. is unknown. Thirty years ago, the U.S. sickle cell anemia population was estimated to be 32,000–50,000, based on reported gene frequencies derived from testing of African-American neonates. Subsequent population estimates of over 50,000–80,000 for both SCD and sickle cell anemia (a common form of SCD) are noted in a variety of publications, usually without a specific reference. Specific methods used to obtain these figures are not provided but are usually discussed in the context of the frequency of sickle cell anemia in the U.S. African-American population as determined by newborn screening data (S512).” Though both authors accurately describe what the estimated prevalence is for their respective countries, there is a difference in how the populations are mentioned. Scientists’ training and views are shaped in particular ways based on a number of variables, including national identity. In studying how illness is socially constructed: “we explore the effects of class, race, gender, language, technology, culture, the political economy, and institutional and professional structures and norms in shaping the knowledge base which produces our assumptions about the prevalence, incidence, treatment and meaning of disease, (34)” (Brown, 1995). As Fullwiley explains in The Biologistical Construction of Race: ‘Admixture’ Technology and the New Genetic Medicine, the interpretation of technologies (as well as the description of associated prevalence rates derived from said technologies) can never be separated from the epistemology of their creators (Fullwiley, 2000).
i am sitting by the window working (well, blogging at the moment). i have just watched/listened to early evening rainfall and have found the Brazilian arts station where the last show was the sound of just the brushstrokes made by an artist followed by the melodic voice of a cantora. the breeze is light with a small edge of chill to it and is coming through the open window to gently make its presence known. i’m still in my lounge pants and am pretty darn content. Like, man this is lovely, content. I like it.
this is in huge part to the change in my surroundings this week. my friend Lenildo is on a work trip to Argentina this week and has let me squat in his lovely apartment. High pressured shower (we’ll get to that later), a full bed, a washer machine, cable (not that important, but nice), and most importantly a lack of bugs and nasty room mates. Man, am i grateful. Also, I can walk easily and in the evenings to food, a market, acai… I also am joined by a friend I made at a LASA conference who happens to be in town to visit the archives and gets the spoils of this sweet apartment as well. Talk about an upgrade in consideration and cleanliness.
Last night, after working I decide to wash my hair at 2AM. The hottest shower I have taken in Brazil in my five times here. SO GOOD. Except the longer and hotter the shower, the more energy it draws and unbeknownst to me at the time, I was drawing so much energy that I caused a power outage in the apartment at 2:30AM. Which meant instant freezing cold water and and complete darkness. Thankfully, I decided to switch my routine of wash hair, condition hair, wash body to wash hair, wash body, condition hair. I was on the third quarter of the condition comb out when -DARKNESS. I was jamming to Spotify tunes and the wifi and consequent music got silenced too. I hopped out. Turned on the iphone flashlight, finished the last quarter. Tried the fuse box – nada. Got dressed. Wrote a note to Rosanna apologizing for all of the hair everywhere since I didn’t get a chance to clean it up thoroughly and warning her of situation, and sat in the light of the street lamps to twist my hair.
When I awoke, Rosanna cheerfully told me it was super common and she just asked the porteiro to switch the fuse for the main apartment downstairs. OH. I thought about talking to the porteiro downstairs last night but honestly it was 3 AM by that time, my hair was wet and unpresentable, and i knew i didn’t have the energy or vocabulary to explain the situation. i probably would have been fine, but i’m glad that R got to the bottom of it all.
Always a new lesson to learn here. Learning and growing.
Captain’s Log 007
I’ve been here a full week in this new habitation of orange juice and skinny jeans. About 47 left. But who’s counting.
It seems I’ve taken to recording sounds when I move in. Here are some Brasilia sounds: http://cowbird.com/story/79459/Novos_Sons/
Some thoughts so far:
O fim … for now.
I’m reflecting every month (and in between) on the state of science. How it’s all going. My reflections. Its the 5th, a Saturday night and I’ve been here (Brasilia, my first post) for four days. I’ve been to Brasilia once before for four days on a hybrid work/student trip. It’s nice enough, but I will always be partial to the coast. I know two people here: my University of Brasilia sponsor, Cristiano and a friend I made in Atlanta, Lenildo, who was visiting as a fellow at Emory and who worked for the Ministry of Health, now PAHO. If you have to know two people, I’m guessing that these are the ones to know.
Cristiano picked me up from the airport, delivered me to my housing, bought me groceries so that I’d have some essentials immediately (hello, toilet paper!), and then walked and drove me around so I’d be familiar with my new settings. Then I met with the School of Portuguese and the International Exchange office…all of this right off of the plane. Shortly thereafter, Lenildo took me to lunch and I passed out afterwards. After waking he came back and took me to a Walmart equivalent.
My place is basic. There is a common living room and kitchen and five individual rooms. I think 4 of the 5 rooms are filled. I’ve met a Jervassa, Bianca, Bridgette, and Marco, but I don’t think Marco lives here. I haven’t seen him since. But I met Bridgette fleetingly and haven’t seen her since either. I don’t know. The internet keeps going out, but you can steal from other floors and so far I haven’t been without. I’m hoping to meet more people in the Portuguese class I’ll be taking and when I’m out of the apartment. Right now I’m in the apt a lot. Lenildo, bless his heart, told me today (after we spent the afternoon at his friend’s house) that he doesn’t want me to spend too much time in the room because I’ll get sad. Truestory. Yesterday I got this super heavy feeling of loneliness. I think because many of my friends were at a Department party for school and I was seeing glimpses through social media. I expected this feeling and expect it will come back, but am looking forward to finding my rhythm. It’s only been four days so I’ll cut myself some slack (mostly because Vanessa told me to).
Regarding the work, I haven’t really started thinking about it yet, though I have posted some preliminary recruitment materials on my Research Facebook profile. I meet with Cristiano and Lenildo tomorrow to discuss my project as a whole and my work plan. I imagine that between class three times a week, archival research (and its subsequent translation-OY), interviews, and meetings, I’ll be very busy. It has been nice waking up to my own internal clock and gorging on TV. I felt like I haven’t pumped the brakes for at least 2 years. I feel optimistic about getting what needs to get done on this leg and that’s basically setting everything up. I have a meeting with the director of the sickle cell program for the Ministry of Health in mid-October and will be prepping for a major round of interviews in late November when I attend a national conference on sickle cell disease in Salvador. I will also be attending a health equity meeting afterwards, extending my stay.
Heeeeeeeeeere we go!
Here are some pics for the first couple of days here:
I had lunch with one of my mentors and committee members, Camara Jones, last week who suggested that I write my reflections at least once a month on my project, where its going, where my head is, what I think some next steps might be. Even though it’s before anything has officially started in-country and is the fourth, I want to put something on paper. On screen?
Tonight my heart is heavy in thinking about Syria, in remembering Trayvon, in thinking about the black Cuban doctors who were booed and harassed once they entered Brazil to aid the poor and rural by white elite doctors. So much trouble in the world. As I’m getting ready to depart for field-work, I know I’m not the first or the last who has felt anxiety about what’s to come. But I have heaps of it. I have received so much support for my project and for me and I have in general been on the receiving end of SO much love. I feel it. I accept it. I marvel at it really. All of this. This journey is so much more than me. I say it all the time. What I’m doing and where I am, who I meet, and where I end up is bigger than me and bigger than what I can see. So why do I feel so anxious? GAH. Maybe because I just had to write a brief bio and choked when I tried to describe me without using “health scientist from the centers for disease control and prevention.” Time for a new identity, Melissa.
Sigh. I am not a title by any means, but boy how much of that title helped develop who I am as a woman, a scholar, a professional? A bit. What I’m going to focus on is the long-term vision. The leap of faith. The reminder that its bigger than a title. And we forge on.
But for realz though, 15 days left in Atlanta and the timer goes off. EEEEEEEEEEEEK.
Alright, the point of this post was not about a freak out. The point is to reflect about where I am in the process. Well, I still have a lot to accomplish. I won’t go through the September to do list. Its massive. But it will get done. It’s not like Brazilians do anything in advance. I’ve got time. Right? I’ll keep telling myself that.
Let’s hope for a proper “First” post on October 1st…or thereabouts.
More iphoneshia for you! I’m ruminating on a few blog posts of more substance though i know my family (and friends!) love the pics. One will be titled “always being black in brasil”. It’s my fourth time here and I’m still always a little surprised how the stuff i read about in journals and books plays itself out in real life…my life. Every summer I’m here it’s something different and I know it’s just the nature of the beast…Brasil is what it is. And while me being a smart scientist from America in some circles puts me into the Brasilian “white” box (which comes with certain privileges), for many, né most, none of those things matter. In Rio, I was made to change eating venues for a dinner meeting once a professor and potential collaborator realized I was black (yeah, it’s not happening); In Salvador, I was not allowed entrance into a restaurant until I forced them to allow me to eat there since they were clearly serving people and was seated in the rear of restaurant when I requested seating in the front so I could watch the sun set; and now in Sao Paulo, I have had the most ________ (I still can’t find the word for it) ongoing interaction with my lodging host that reminds me everyday about the racial relations in Brazil. It also has me thinking sincerely about what a year will be like (living-wise) here when I return. Don’t get me wrong, I love Brasil and all of its ongoing contradictions. It continues to fascinate me and I admit to the sadomasochistic relationship that we’re in. As a friend reminded me — this is the life I chose. God knows its a good and blessed one. And as another friend reminded me:
so I’m trying. I’m being respectful and I’m actively looking to move for my last 3 weeks…because at the end of the day I deserve peace of mind and kindness too. We’ll see how it goes.
In the meanwhile! I’ve been adventuring all over town. This should have probably been split into two posts, but here it is…CH-ch-ch-check it out.
near the end of today’s (sun, july 7) day after visiting parque ibirapuera