An Identity Crisis for Sickle Cell Disease in Brazil

In recognition of Sickle Cell Awareness month, I am delighted to share a digital project titled “An Identity Crisis for Sickle Cell Disease in Brazil.”  This can be viewed in English and Portuguese and was created to give something tangible back to the communities in Brazil that were so generous with their time for my research. #sicklecelldisease #doençafalciforme #sicklecellawarenessmonth #reciprocity

This project links directly with my publication “Biocultural citizenship and embodying exceptionalism: Biopolitics for sickle cell disease in Brazil” and provides an overview of Brazil, SCD, and relevant health policy.  It discusses the ways in which Brazil’s SCD story is inextricably linked to the African continent and how belonging operates along a color continuum.

Most importantly, this project spotlights the voices of many of the narrators who provided me with their oral life history during my time in Rio, Salvador, Brasília and other cities.  These voices speak to the lived experiences of SCD or narratives from within the SCD Movement.  Within them, you’ll find sound bytes of hope, resiliency, strength, and pain.  It was my absolute honor and privilege to be a part of this research experience with these people.

You can view the site on your mobile device, but it operates easier on a desktop.  Be sure to click or scroll to each dot on each panel to ensure that you’ve seen and heard everything.  Click the speaker to hear the audio (in Portuguese).  The translated text accompanies each voice.  If you are more comfortable reading Portuguese, be sure to access the porto page by clicking in the top right corner.

This project was funded in part by @MichiganHMP and @UMichIRWG.  The site was developed by Honey Locust Health (http://honeylocusthealth.com/) and I had AMAZING assistance from @UMichSPH undergraduate and graduate students: https://melissacreary.com/research-team/

As September comes to a close, I hope that you take time to learn more about this disease that tells us so much about science and society.  I have been amazed at how much SCD has been in the spotlight of late, how many people are seeking to “right the wrongs” associated with the neglect of this disease.  In the never-ending quest for equity, I hope that this attention materializes into more than just wishful thinking and lip-service.  People living with SCD deserve much more. https://www.cdc.gov/ncbddd/sicklecell/index.html

https://melissacreary.com/bioculturalcitizenship/pt/

Em reconhecimento do mês da Consciência da Doença Falciforme, tenho o prazer de compartilhar um projeto digital intitulado “Uma Crise de Identidade da Anemia Falciforme no Brasil.” Esse projeto pode ser visto em inglês e português e foi criado para dar algo tangível de volta às comunidades no Brasil que foram tão generosas com seu tempo para minha pesquisa. #sicklecelldisease #doençafalciforme #sicklecellawarenessmonth #reciprocity #reciprocidade

Este projeto está ligado diretamente à minha publicação “Cidadania biocultural e personificação da excepcionalidade: Biopolítica para a doença falciforme no Brasil” e fornece uma visão geral do Brasil, doença falciforme, e políticas de saúde relevantes. Ele discute as maneiras pelas quais a história de doença falciforme do Brasil está intrinsecamente ligada ao continente africano e como o pertencimento opera ao longo de um espectro de cores.

Mais importante, este projeto destaca as vozes de muitos dos entrevistados que me contaram sua história de vida oral durante meu tempoo Rio, Salvador, Brasília e outras cidades. Essas vozes falam sobre as experiências vividas da doença falciforme ou narrativas de dentro do Movimento da Doença Falciforme. Neles, você encontrará áudios com mensagens de esperança, resiliência, força e dor. Tive a honra e o privilégio absoluto de fazer parte dessa experiência de pesquisa com essas pessoas.

Você pode visualizar o site em seu celular, mas funciona mais facilmente em um desktop. Certifique-se de clicar ou rolar para cada ponto em cada painel para garantir que você viu e ouviu tudo. Clique no alto-falante para ouvir o áudio (em português). O texto traduzido acompanha cada voz. Se prefere ler em português, não deixe de acessar a página de português clicando no canto superior direito.

Este projeto foi financiado em parte por @MichiganHMP e @UMichRWG. O site foi desenvolvida pela Honey Locust Health (http://honeylocusthealth.com/) e eu tive uma assistência INCRÍVEL de alunos graduação e pós-graduação da @UMichSPH: https://melissacreary.com/research-team/

Como setembro está chegando ao fim, espero que você reserve um tempo para aprender mais sobre esta doença que tanto nos diz sobre a ciência e a sociedade. Tenho ficada surpresa com o quanto a doença falciforme tem se destacado ultimamente, quantas pessoas estão buscando para “consertar os erros” associados à negligência com essa doença. Na busca incessante por equidade, espero que essa atenção se materialize em mais do que apenas sonhos e palavras de boca para fora. Pessoas que vivem com a Doença Falciforme merecem muito mais. https://www.cdc.gov/ncbddd/sicklecell/index.html 

I was asked by the ladies of The Wandering Scholar to contribute to their podcast about travel. Let my quiet storm voice soothe you as you learn more about my journey of being a researcher who has SCD-while-traveling and how to be a supportive travel partner for someone who has a chronic illness.

https://podcasts.apple.com/us/podcast/why-we-wander/id1451558820?i=1000442305295

I was working on Gilberto’s narrative last night. I’m profiling his story in my 3^rd 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:

http://www.cdc.gov/ncbddd/sicklecell/index.html

http://www.sicklecelldisease.org/

https://scinfo.org/

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!

When my host and her family and I walked back to the car.  I told them thank you for the view.  The son, said don’t thank us, thank God.  Indeed.

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:

• i’m beginning to interact with my apartment mates more after almost a week of locking myself in my room watching ‘girls’ and catching up on sleep. there’s only so much shoshanna one can take after all, plus i finished the series. right now there are three folks: alain-a doctor who’s studying tropical medicine, jervasso, a prof of some sort, and a young lady named bianca. all i know about her is that she scored the best room.
• we have a weekly cleaning service. i think my mates don’t wash the dishes and just wait it out till they get washed each week. and yes, there is a separate door for the cleaners in each apartment.
• i’ve started my research officially today. went to the children’s hospital. thought i was going to get a tour and meet some folks. in addition to that, i observed a couple who were told for the first time that their child is diagnosed with SCD. the mother cried. she thought her child would die by age 5-you know, according to google. it was intense and unexpected.
• also. full steam ahead. i have officially started entering items in my calendar for me to remain organized as i have a meeting with the person who led the charge for affirmative action at UnB, persons involved in the initiative around the health for the black population at ministry of health, professors here who share like interests, and the governmental agency that deals with the promotion of race-all in the next 3 days. yep. this is happening.
• i feel like my porto is increasingly getting better and worse at the same time
• seems I’m transferring myself from the politics of sickle cell in the US to the politics of sickle cell in Brazil. Oy. Its clear I will have to tread lightly and be a neutral as possible. can’t afford the cut off.
• after class today i went to the cafeteria (I thought it was the sole source of food at 30 minutes walking distance from me but there is mini fake lake-side dining at the gas station about 15 minutes away if i get desperate. seriously, its like a restaurant)…any way i went to the cafeteria and it was swarming with young people. i mean hundreds upon hundreds upon hundreds of them. and of course there was a line to pay for lunch and then the line(s) to receive the lunch. too many lines, too many people. i left for the almost empty cafe steps away.
• this bug situation. i went to the housing office to see if i could switch rooms. i was told no. i was told that they only come between 5 and 9 so make sure door/windows are closed and there is no light to attract them. i was told that the housing manager had to dispose 2 kilos worth of bugs from his own house (so why should this privileged american be any different-he didn’t say that. but i felt him thinking it). i was told to deal with it. alrighty then. i will.
• the first time i walked to campus, i heard what’s best described as audio feedback. loud and screeching. i thought it came from a machine. i soon found out it came from the trees. presumably insects in the trees and not just in the evening. daytime too. its kinda amazingly loud and i suppose everyone here is used to the sound. i recorded it on my way to class today: http://cowbird.com/story/79460/Songs_In_The_Sunshine/

O fim … for now.

…not really.

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: