CHRISTOPHER: Wassup big brother?! How you doin, man?

GREG: What’s goin' on, brother?

CHRISTOPHER: Nice to meet you, man!

 

CHRISTOPHER: Prodigy has a big brother. His name is Greg Collins. And he’s much older than Prodigy, so he actually remembers the day his baby brother was born.

 

GREG: That was my buddy, man! He was — you know — I took to him right away, because, you know, I never had a sibling. You know, you got guys who had older brothers — you know — you wanted to be an older brother!

CHRISTOPHER: What did y’all call him when he was born first of all? Not Prodigy, of course!

GREG: No! Of course not. His father‘s name was Albert Jackson Johnson the III — I think it was the III. Anyway, so when they were naming my brother, my mother said, “o no! We’re not naming him no Albert Johnson”. She wanted to name him T’Chaka . They kind’ve — uh —  I guess worked together. They came to a middle ground and said well we’ll name him that but we can put T’Chaka, you know, in there. But we used to call him “Chak,” “Chaka,” you know “Chaky”. You know, that’s what he was called. Nobody ever called him Budd or Albert! He was “Chaka,” you know “T’Chaka”, and we called him “Chaka” for short you know…

GREG: I used to always try to do things with him, because I wanted that interaction, as my only sibling, my only brother. Yeah, I always tried to take him with me wherever I went - you know, when he could. Because of his condition, though. I didn’t get to do that a lot, because I had to be very careful...

CHRISTOPHER: I’m wondering if you ever saw him have an episode? Can you tell me about one time?

GREG: Many times, many times. There were many times I took him to the hospital. When I had my own family, he used to come to visit me. And he had —  I think it was twice he had episodes. I had to take him to the hospital. The pain just seemed so excruciating, like you’re wondering — I couldn't feel pain like that. Watching him and his pain, going through what he's going through... and those movements — and ugh! I couldn’t feel that, man, but I felt it! I couldn’t feel it, but I felt it. Wow.

 

CHRISTOPHER: Prodigy had countless experiences just like this. Ever since he was diagnosed as an infant in 1975. Back then, children with sickle cell anemia weren’t expected to make it to adulthood. They might not even survive their first few months.

 

MARY: But Prodigy? He made it! He was born at a breakthrough moment in the history of sickle cell. After decades of neglect, the country really started to pay more attention to this disease.

 

CHRISTOPHER: We’re gonna leave Prodigy’s story for a moment, and go back to a period in time when a group of doctors, black radicals — and even Hollywood stars — took a misunderstood disease and turned it into one of the most urgent social and political issues of their era.

 

MARY: I'm Mary Harris.

 

CHRISTOPHER: And I'm Christopher Johnson. This is The Realness.

 

PRODIGY: The doctor always told me all my life you got sickle cell. It’s nothin’ you can do about it. You not gonna live past 40. That’s it. I never thought like I’m gonna die when I hit 40, ‘cause that’s what they said. But definitely the pain that I was goin’ through made me off a lil bit — you know what I’m sayin’?

 

CHRISTOPHER: Back in the 1970s one of the most popular daytime TV programs was “The Mike Douglas Show.”

 

MIKE DOUGLAS SHOW: And now here’s Mike.

 

CHRISTOPHER: It was hosted by an ex-big band and nightclub singer, and he’d have all kinds of celebrities on stage with him.

 

MIKE: That was pretty good wasn’t it? How about my band?

 

ALONDRA: This Mike Douglas Show, which was filmed in Philadelphia, was watched by millions of people every day.

 

CHRISTOPHER: Alondra Nelson is a sociology professor at Columbia University, and she’s actually written about one specific episode in February 1972.

 

ALONDRA: And this particular week it would have been watched quite a lot because it was guest hosted by John Lennon and Yoko Ono.

 

MIKE DOUGLAS SHOW: John Lennon and Yoko Ono!

 

CHRISTOPHER: On this show they've got Vivian Reed, the actress. They've got this sketch comedy group called The Ace Trucking Company.

 

MARY: And in the midst of all of that, John and Yoko and Mike Douglas, they turn to something really serious — 

 

MIKE: There’s a disease in our society today that is a major concern: sickle cell anemia. And it affects a special segment of the society. Here is a young man who is a medical student, and is working on being a leading authority in the field. Meet Donald Williams.

 

CHRISTOPHER: Donald Williams had been working with The Black Panther Party. He’d been helping them test people for sickle cell in the Oakland, California area. And when he walks out on stage he’s wearing a suit and he's carrying a black briefcase full of his medical books.

 

MIKE: You really came prepared!

DONALD: Well I’m primarily a student. I have to keep my books with me so I can study...

 

MARY: So he settles into his chair, and jumps right into this really thorough, detailed explanation of what sickle cell anemia is.

 

DONALD: Sickle Cell Anemia is a disease of the blood. It’s an inherited disorder… it’s the only way it can be contracted — or cannot be contracted. The only way it can be gotten is through heredity. Occurs primarily in blacks. It occurs in some Jewish populations, it occurs in some Turks.

 

MARY: And Mike Douglas, you can tell he’s struggling to keep it entertaining.

 

DONALD: The trait occurs when the person has only inherited one gene from one parent for production of hemoglobin S, which is the abnormal hemoglobin in sickle cell.

MIKE: Boy you fellas with those medical terms you really...

 

ALONDRA: Talking about sickle cell anemia is not good television. It's not sexy, it's not interesting and it was clear — certainly a few minutes in — that Mike Douglas is a little bit uncomfortable, because he's a TV man and he knows this is not good TV.

 

MIKE: Now — What is your goal?

DONALD: Our goal is to educate the entire black population in this country about sickle cell — what having the trait means, how it’s passed on, how a kid gets the disease.

DONALD: (So you can prevent it in a way —) You can prevent it only if you prevent people with the trait from having kids.

JOHN: From falling in love — right?

DONALD: Yeah, sure.

 

MARY: This interview is important, because it’s one of the best examples we have of this pivotal moment in the 1970s: when sickle cell became part of the national conversation.

 

CHRISTOPHER: It had come a long way since the disease was first discovered in the West in 1904. That’s when a doctor was looking at some blood under a microscope — sees these — quote “peculiar and elongated red blood cells”.

 

KEITH: And what he theorizes is that this isn't just some kind of anomaly - it's an actual new disease.

 

CHRISTOPHER: This is Keith Wailoo. He’s a history professor at Princeton.

 

KEITH: It's really from the 1910s through the 20s and 30s that clinicians start to identify these sickle shaped red blood cells as being linked to particular kinds of painful episodes and painful crises. And then early childhood mortality.

 

MARY: A lot of physicians might not have been putting a kid’s blood under the microscope. So when they saw kids with Sickle Cell come in, they might not have known it was one condition. They saw kids coming in with pneumonia and meningitis because sickle cell wrecks your immune system.

 

CHRISTOPHER: There’s also something called hand foot syndrome. And basically it makes baby’s fingers and toes swell up, and it hurts so bad that sometimes babies will suck on their fingers and toes just to make them feel better. It’s a really common symptom of sickle cell. But back in those early days, doctors may not have really known that. Researchers were just starting to figure out how this disease worked — inch by inch.

 

KEITH: And then in comes somebody like Linus Pauling.

 

LINUS: After some years, at the end of the war, I learned about the disease, sickle cell anemia.

 

MARY: Linus Pauling won the Nobel Prize twice. He’s a chemist. He’s often considered one of the founders of molecular biology.

 

KEITH: And what Linus Pauling and his team of researchers theorized is that there can be such a thing as a disease that's caused by a molecule.

 

LINUS: Could it be possible that this disease, which seems to be a disease of the red cell because the red cells in the patients are twisted out of shape, could really be a disease of the hemoglobin molecule?

 

CHRISTOPHER: The hemoglobin molecule is a part of the red blood cell and it moves oxygen all over the body.

 

MARY: Pauling saw this glitch in hemoglobin. It made the blood cells change shape — from round to more of a crescent, or a sickle.

 

CHRISTOPHER: And those sickled cells, they don’t move through the body as smoothly as round cells. Instead they stack up in a way that blocks the flow of blood and oxygen.

 

LINUS: Nobody had ever suggested that there could be molecular diseases before, but this idea popped into my head.

 

CHRISTOPHER: Pauling’s discovery was pretty incredible.

 

KEITH: What it said is: We need to think about diseases as maybe happening at the level of small molecular dynamics, rather than at the level of infections and viruses or bacteria.

 

CHRISTOPHER: But there was also a big problem with scientists like Pauling. It was all in the way they talked about sickle cell patients.

 

LINUS: I believe first that Heterozygotes should be identified.

 

CHRISTOPHER: Heterozygotes is the term Pauling used to describe people who had the sickle cell trait who might pass it on to their kids. And he had some thoughts on how stop the spread of this disease. And honestly — they’re horrifying.

 

LINUS: If two heterozygotes marry one another, they should have no children, in my opinion.

 

KEITH: In a fairly kind of naive comment — he says, “well maybe we can find a way to tattoo on the forehead people who have the sickle cell gene and you put a tattoo on another person's forehead who is also a carrier”, and then he argues that they see each other and they see that each of them carries this gene and maybe they will avoid falling in love with each other. That is to say that they themselves will recognize the danger.

 

LINUS: If they want to marry one another, they should probably be sterilized so as to be sure that they would have no children.

 

KEITH: He was just trying to think through, how do you actually solve this problem, knowing what we know about the mechanisms of inheritance? But this is a good example of how sometimes scientists can be callous because they are narrow.

 

CHRISTOPHER: This kind of scientific approach — this cool, callous theorizing — this wasn’t going to be enough to save lives. That was going to take a different kind of fight — in the communities where sickle cell was being lived and treated. That would have to be a fight advocating for people.

 

KEITH: Sickle cell disease sees a very gradual two decade transformation as a high profile cultural phenomenon.

 

MARY: It started in the 1950s with the Civil Rights Movement.

 

KEITH: And then there's a real turning point in the late 1960s with The Black Panthers, who essentially argue that not only is this our disease, not only is this a statement about what it means to be black, but we need to determine our own future by spreading information about it, by educating ourselves for it and by raising funds to actually support the health and well-being of our children.

 

CHRISTOPHER: The Black Panthers created a national sickle cell screening program. They would test people everywhere — at churches, at clinics, at community education rallies.

 

BOBBY: I’m sure we tested over 4.5k people for Sickle Cell Anemia last night.

 

CHRISTOPHER: Party chairman, Bobby Seale, helped lead the charge.

 

BOBBY: And I think that the voter registration is running neck in neck with it.

 

KEITH: So it really becomes part of that broader dynamic that's very much part of the late 1960s rise of black power.

 

CHRISTOPHER: The Panthers made the problem of this one disease — Sickle Cell Anemia - about something much bigger: they made it about the exclusion of black people from mainstream  medicine.

 

ALONDRA: And, moreover, about their concerns for how health care and it's the neglect of healthcare is a way of doing harm to black communities, right? Not only is it you know a kind of benign neglect. They accused it of being a kind of genocide.

 

CHRISTOPHER: The Panthers also wanted people with the disease to understand that they were entitled to the best care...

 

ALONDRA: ...that they deserved research into their disease, that they deserved scientists — our best scientists — putting their efforts into trying to uncover or to discover a cure for the disease. And so they really helped to change a national conversation about the disease.

 

CHRISTOPHER: There was this groundswell in the 1960s and the early 70s that turned a spotlight onto Sickle Cell Anemia. The Panthers didn’t do it alone. There were TV shows and movies about it. Major athletes and actors were talking about their own struggles with sickle cell. Black folks were really taking ownership of this disease. This is not unlike what a lot of communities would do in the 80s with HIV and AIDS to own this disease and to own the people who are going through it and to protect them as ours.

 

BOBBY - Brothers and sisters, people, and human beings alike — it’s good to see you here tonight. We’re running a kind of revolution that involves our very lives. And it involves us building what we call people’s power, starting in the heart of the black community…

 

CHRISTOPHER: And then the next step was to get that critical mass of understanding and put pressure for change on people who actually were in positions of power.

 

NIXON: Presenting to you, the President of the United States!

 

MARY: In his 1971 state of the Union address. President Nixon had been talking about overhauling the nation's health care system.

 

NIXON: I will offer a far-reaching set of proposals for improving America's health care and making it available more fairly to more people.

 

MARY: He was even talking about universal coverage.

 

NIXON: America has long been the wealthiest nation in the world. Now it is time we became the healthiest nation in the world.

 

MARY: It's not like sickle cell was on Nixon's agenda. His inner circle didn't really understand what the disease was about but because of all this social and political pressure, it was clear he had to do something. So a year after that speech, he signed the Sickle Cell Control Act into law.

 

CHRISTOPHER: It dedicated $155 million to the research and treatment of this disease. It also created a whole network of sickle cell care centers all over the country.

 

MARY: The Panthers and others, they saw this as a pretty cynical ploy by a president who otherwise wasn’t doing a lot for their neighborhoods.

 

ALONDRA: One thing you might say is that that Nixon’s strategy was an attempt to co-opt the narrative of black activists like the Black Panther Party about the state neglect of African-American communities. Right, so this then becomes a way to say, “no, we're actually not neglecting your communities.”

 

CHRISTOPHER: But someone on Nixon’s team knew enough to find the best people working on the disease - and, recruited them to advise the president. One of those experts was a doctor who figured out a way to treat babies that kept them alive. And she used that same technique to prolong the life of the small frail boy from Long Island, New York who everyone called T’Chaka.

 

PRODIGY: Growing up with sickle cell — you know — it was kinda different for me, man. It made me real angry at God, you know, for making me through that  pain. I was a young kid. I didn’t understand why I was going through that. I was tired of that pain.

 

PRODIGY:  Pain and I got real close in those early years.

 

MARY: Prodigy doesn’t talk about sickle cell a lot in his autobiography. But he does talk about how sickle cell changed him as a kid.  

 

PRODIGY: Ever since I was born, I was at the hospital at least four to six times a year with Sickle Cell. Every year. Sometimes for a week, sometimes even up to a month.

 

MARY: He tells one story in particular about this hospital visit. He was about four years old at the time. His grandmother was there with him. She was watching over him.

 

PRODIGY: I was sleeping hard for a few hours, and when she tried waking me up, I wouldn’t open my eyes. She called the doctors to check on me, and they said I was just sleeping. She called their superiors, and they said the same. But my grandmother — a southern, strong-willed female from the old school — knew better.

 

CHRISTOPHER: His grandmother was Bernice Johnson. And she was a force. A powerful, super influential businesswoman who owned a well-known dance studio in Queens, New York.

 

PRODIGY: She told them that the next person she was gonna call would be her lawyer if they didn’t wake me up immediately. They went into a frenzy, finding that all my vital signs were deadly low, and I was slipping in and out of a coma. Grandmoms saved my life.

 

CHRISTOPHER: It's something that so many sickle cell patients run up against — not being trusted, not getting care. And what we've learned from talking to a lot of people in Prodigy's life is that his survival depended on a huge network of people: his grandmother, his mom, neighbors, and friends.

 

MARY: And there was also this pediatrician — Dr. Yvette Francis-McBarnette. She was instrumental in making sure Prodigy made it out of childhood.

 

PRODIGY: Dr. Francis had her own sickle cell clinic in a house on Farmers Boulevard in Jamaica where I hated going because it meant I was getting a penicillin shot in my butt.

 

CHRISTOPHER: Dr. Francis was a pioneer. She’d started practicing in the 1950s, when mortality for kids with sickle cell still hung around 10 years old. In the 1960s, she opened a clinic in Queens, New York, where she treated children with sickle cell. And by the time Prodigy was born in 1974, the Nixon White House had appointed Dr. Francis to help with its work on sickle cell.

 

MARY: And when Dr. Francis looked at kids like Prodigy, what she saw was that they kept getting those infections, and that would cause them to get really sick — sometimes even die. The primary thing that goes wrong with sickle cell — your blood cells getting stuck in your vessels has this effect on your immune system it actually blocks off your spleen, which means that when you get sick you get really sick. When you get a cold, it can easily become pneumonia. And so she and other doctors like her start thinking how can we prevent infections in these kids. And the way they did that was by giving these kids antibiotics — shots of penicillin and it seemed to work.

 

ELLEN: Remember that it was uncommon for those with sickle cell to live past their teenage years when mom started medicine, — and she was helping kids who it wasn't clear if they would survive.

 

CHRISTOPHER: Dr. Francis died in 2016. But her daughter, Ellen McBarnette, she actually worked at the clinic.

 

ELLEN: And she was doing her best, and she didn't know when she first started helping kids survive past 20. If they would survive to 25, would they survive to 30? This is ground breaking.

 

CHRISTOPHER: Dr Francis started using antibiotics in this way 15 years before the wider medical community acknowledged just how effective it is. And largely because of this treatment,  Prodigy is among the first generation of kids born with sickle cell who — it’s almost like the sidewalk — it’s extended in front of them very slowly. And if you look at a graph that charts life expectancy for people with sickle cell anemia over the past century,  the line on that graph spikes right around the early 1970s — this is right around the time that Prodigy was born.

 

KERRI: I think our favorite game was tag in the dark — someone’s it, you choose who’s it — and then you turn the light off...

 

MARY: Kerri Edge grew up with Prodigy. They met because when she was still a toddler, she started taking dance classes at his grandmother’s dance studio. And just like his brother, Greg — she calls him T’Chak.

 

KERRI: Every Saturday, pretty much, he was there, hanging around getting into trouble.

MARY: What do you remember about T’Chak?

KERRI: He was quiet, funny — a real boy’s boy — you know — very mischievous — liked Spiderman.

MARY: Did you see him have an episode?

KERRI: Mm hmm — I mean it had to have been excruciating pain — I’ve never seen anyone scream like that ever. He appeared to know that it was going to be painful — and that there was nothing he could do, but take the pain — he couldn’t stay quiet. I felt like I was supposed to stop it, and didn’t really know how other than to just go get an adult.

 

MARY: Kerri and her mom were part of this extended family that took care of Prodigy when he was little. They would go to the hospital when he was there. They’d take shifts and watch over him.

 

KERRI: I learned very early that he was not to be alone.

MARY: Tell me about that.

KERRI: T’Chak can’t be alone. I mean he can be alone, but he can’t be like completely alone.

MARY: Why not?

KERRI: Because something can happen! At any moment!

 

MARY: All of this going in and out of the hospital, all of these awful experiences he had while he was there - they had all just began to take a toll on him.

 

KERRI: Around the time he was 12, he was getting fed up — with it. And he also started removing himself more, and I noticed that he became less friendly. He was never rude to me, but I could see him being rude and short with people, and my conversations with him didn’t include so much laughter anymore.

 

PRODIGY: Growing up with sickle cell, you know — it was kinda different for me, man. It made me real angry at God, you know, for making me go through that pain. I was a young kid. I didn’t understand why I was going through that. And, I wanted to kill myself. You know what I’m saying? I ain’t even want to live anymore ‘cause I was tired of that pain. It's like... so painful — I was like 12 years old, and I wanted to kill myself. My mother came in my room and she saw me in the closet trying to cut my wrists with a steak knife, you know what I mean?

 

CHRISTOPHER: But at the same time Prodigy was going through all of this — at the same time he was feeling like he couldn’t live with this pain — he was also discovering — hip hop.

 

MARY: He heard how LL Cool J growls on the mic on “Rock The Bells”.

 

CHRISTOPHER: He heard Run DMC’s classic track “Sucka MCs” — all drums hard, in-your-chest, kick, and snare.

 

PRODIGY: When I heard those songs, that just changed everything in my life. I used to play the songs for my mother like 'yo ma, check this out". I used to say Rakim’s rhymes to my mother, and act like I wrote it.

 

CHRISTOPHER: Rap music spoke to the anger he says he felt, because of his condition. And all of the fire and the aggressiveness of the music — Prodigy loved it.

 

PRODIGY: I was like aight this what I wanna do. It was just a vibe. You could just feel it. You could feel — this is what it's supposed to be.

 

MARY: He says hip hop saved his life.

 

CHRISTOPHER: Next time on The Realness: Prodigy wasn't just born at a pivotal moment in the history of sickle cell. Mobb Deep came of age during one of the most electric moments in rap music. We take you inside the Golden Age of Hip Hop and one of New York City's most epic nightclubs.

 

CHINKY: There were little compartments, rooms. You would find a new one every time you went to this damn club — and these rooms used to have shit goin’ on in em.

CHRISTOPHER: Like what?

CHINKY: Sucking, fucking, snorting, smoking, this, that. Every inch of that club, it was a party.

 

 

(CREDITS)

 

CHRISTOPHER: The Realness is a production of WNYC Studios - hosted by me, Christopher Johnson, and Mary Harris.

 

MARY: Our editor is Christopher Werth. We had help from Consulting Producer Kathy Iandoli and Associate Producer Eryn Mathewson. Celia Muller makes sure we’re legally in the right. And Michelle Harris is our fact checker.

 

CHRISTOPHER: Jared Paul is our engineer, Cayce Means is our technical director. Our team includes Amanda Aronczyk, and Audrey Quinn. Along with Steven Reneau, Kaitlin Sullivan, Arianna Jones, and Nikki Galteland.

 

MARY: WNYC’s Vice President of News is Jim Schachter. Trumpeter Christian Scott wrote our beautiful theme song, and composed a lot of the music in this series.

 

CHRISTOPHER: Additional music by Melanie Hsu.

 

MARY: Thanks to Buck Fifty Productions for sound from Prodigy’s audiobook. And thanks to Pandora for sharing audio of Questlove Supreme. A heads up from them: you can stream their “Sounds Like You” concert online; that performance included a rendition of Mobb Deep’s “Shook Ones Part 2” by Nas. It was recorded just a few weeks after Prodigy died.

 

CHRISTOPHER: We also want to show love to Prodigy’s friends and family who gave us their time, welcomed us into their homes, and shared their memories of a man they treasure.

 

WNYC’s health coverage and The Realness is supported in part by the Robert Wood Johnson Foundation, Jane and Gerald Katcher and the Katcher Family Foundation, Science Sandbox, an initiative of the Simons Foundation, and the Alfred P. Sloan Foundation.