This week, we’re presenting stories about overcoming obstacles and breaking down barriers -- whether those barriers are institutional or written into our genetic code.
Part 1: Aletha Maybank's childhood experiences with institutional racism inspire her work to combat structural barriers as a physician.
Aletha Maybank, MD, MPH currently serves as a Deputy Commissioner in the New York City Department of Health and is the Founding Director of the Center for Health Equity. The Center’s mission is to bring an explicit focus to health equity in all of the Department’s work by tackling structural barriers, such as racism, ensuring meaningful community engagement, and fostering interagency coordination in neighborhoods with the highest disease burden. Prior to this role, she was an Assistant Commissioner in the NYC Health Department and served as the Director of the Brooklyn Office, a place-based approach. Dr. Maybank also successfully launched the Office of Minority Health as its Founding Director in the Suffolk County Department of Health Services in NY from 2006-2009. Dr. Maybank serves as Vice President of the Empire State Medical Association, the NYS affiliate of the National Medical Association. In the media and on the lecture circuit, she has appeared or been profiled on Disney Jr.’s highly successful Doc McStuffins Animated Series, ESSENCE Facebook live and their Festival’s Empowerment Stage, MSNBC’s Melissa Harris-Perry show, and various other outlets. She has also advised on the award-winning documentary Soul Food Junkies by Byron Hurt and Black Women in Medicine by Crystal Emery. For her accomplishments, she has won numerous awards.
Part 2: Joselin Linder shares a unique and deadly genetic mutation with just fourteen other people in the world -- and must make a difficult choice as a result.
Joselin Linder's work has appeared in The New York Post, as well as on Morning Edition, Joe's Pub, and Life of the Law. er book, The Family Gene, comes out in paperback on June 12, 2018.
Episode Transcript
Part 1: Aletha Maybank
When I was four years old, someone asked me what do I want to be when I grow up. I replied, “I want to work a cash register in a grocery store.”
Now, my mother was standing close by and she overheard but she didn’t let me know anything at the time. But that Christmas, Santa brought me a Fisher Price toy doctor’s kit and I wanted to be doctor ever since then. So I say that my destiny with science actually began as divine intervention from my mother.
Science was a strong suit for me. I love science. I remember my big first science fair that was in sixth grade. I chose to grow sugar cubes. I’m very clear at this point in my life you can’t grow sugar cubes, but I didn’t know that.
So three days before the science fair happens, I have like this gooey mess on strings and I had to figure out what in the world am I going to do? So I find some Styrofoam in my home, I cut it up in a cube, literally, dip it in glue, dip it in sugar, tie a string around it, hung it from a glass and, voila, sugar cubes.
The night of the science fair, I’m standing by my desk. Teachers were passing by, parents, my mother was passing by and I am so sure somebody is going to figure all of this out. So the night comes close to an end and nobody did. So nobody knows that you can’t grow sugar cubes, clearly. I ended up actually getting an A on the project.
I thought the night was over and this was great. So we’re walking out of the school to my mom’s car on our way home and all of a sudden I hear a loud, familiar voice of one of my classmates yell, “Chocolate world,” at my mom and I.
Now, to provide a little context, I grew up in the suburb of Harrisburg Pennsylvania and everything Hershey, Hersheypark, Hershey Chocolate World, Hershey Hotel, you name it. Hershey was about 15 minutes from my house.
And the neighborhood that I grew up in was predominantly white. We were the only black family. The school at that particular time I was one of the only black kids in the sixth grade class. So clearly, my skin reminded this little boy of chocolate, which may not seem like a totally big deal, and I want to say that that’s not the worst that I had been called in school, but to a 12-year-old little girl who just wanted to fit in, it was.
This wasn’t the first time that he called me it. It was like the hundredth time. And each time it was at the indifference of teachers, each time I was utterly embarrassed and I just wanted him to stop. This time was the first time that my mother was with me. I wasn’t alone and I wasn’t unarmored.
So my mom grabbed my hand, darted back into the school, down the hall, into the classroom and found him underneath a desk. He peered out from the desk and my mom bent over and she said, and I don’t mean this toward you, but, “How would you like it if I called you white trash?”
Now, I had no clue what white trash meant at the time, and I didn’t think it was really important. I was just happy that I had somebody with me to defend, to speak up, and to advocate on my behalf. This wouldn’t be the first time or the last time that my mom came to rescue my dignity. It actually became quite habitual out of necessity.
There were multiple times in which she had to go to the school and she was very clear that the educational system was undermining and underselling my own potential. There were letters and phone calls and visits for things like, “Why is Alethea placed in the remedial reading group,” or telling the guidance counselor, “She is going to apply to more colleges than just those safe schools that you recommended.” Or in twelfth grade her having to sign a letter stating that if I failed AP English it wasn’t the school’s fault, and no other parent had to do that. This kind of advocacy and interaction happened until the very end of school.
A week before my senior year was over, it was announced that we would have our first multi-cultural day in high school and I was super excited. We had never had a day like this before. I was even more excited because they asked me, the leadership, to organize the African-American table.
The day came and myself and two other classmates of mine organized the table. It was great. With the exception of the watermelon plate that was placed in our table without asking us, it was all good.
We had this flyer on the table that said, “Racism still exists. Beware.”
A few students came to me and said, “Hey, can we have copies of this?” And I said, “Sure. Sounds great.”
I go to the secretary’s office, I ask her could she make copies. She says yes. She doesn’t ask me any questions. She makes the copies, I take them and I put them back on the table.
The next morning, I got called to the principal’s office out of that same AP English class and was told to sit down. The principal told me that skinheads came to him and said that if they are not allowed to pass out their materials and paraphernalia, why are they allowed to pass out theirs? So the principal thought that the most equitable thing to do was to give me in-school suspension for failure to get permission to make copies.
My mom tried to fight it at the superintendent level but lost. So while most seniors are very excited at their very last day of high school, my very last day of high school I sat in in-school suspension very confused, upset, and very clear that I would never step foot in that school again.
I wasn’t a problem child. I was considered a leader in many ways. But what I did learn is that no matter how good I was, that if there is a more powerful, more privileged system and people who thought I wasn’t good enough, they were going to tell me so and they would do whatever it took to block my own blessings.
I learned that fear silences people. There were many opportunities where parents, teachers, and other students could have spoken up and advocated along with my mom that this wasn’t right, but they didn’t.
And I also learned that advocacy does not always yield the results we want when we want them. But what I mostly, mostly learned was just really from watching the courage of my mother in that moment.
So I went on to college. I graduated from one of the top universities in the country with a concentration in natural sciences, public health. I went on to medical school and then I went on to residency, pediatric residency. I chose pedes because I love children. There's no real profound reason except for I just really love children.
But every Thursday when I was a resident, I would have to travel from the affluent area of where my hospital was for residency to a poorer neighborhood in New York City. It was predominantly black and plagued with the same familiar ills that most poor neighborhoods are that have experienced and have gone through cycles of disinvestment.
On this one particular Thursday, in the usual fashion, I walk up to the door. I take off the chart, and I walk into the room. All of a sudden, I’m physically struck by the physical size of the family that’s sitting in front of me. It’s a mother and her two kids, one girl, one boy. The 13-year-old girl, she weighs probably about 240 pounds and the boy weighs almost the same. He's 10 years old, weighs about 239 or 238 pounds. The mom I couldn’t weigh her because she's not my patient, but she would have been identified at morbidly obese.
When I looked down at the chart, I could see that there had been recommendations for sending these children off to a weight loss intervention several times. But then there was another note that said the insurance doesn’t cover it, which was Medicaid, so essentially there really was no plan for this family.
As a doctor, in doctor fashion and what we do, I said, “Well, let’s figure out a plan.”
So our plan consisted of eating healthy foods, how we’re going to do that, and then also how we’re going to do more physical activity. Then I thought it would be really good if we brought them back every single week and did weight checks.
The next week, the week after that and the week after that, they came back. We did the weight checks but, of course, there was no weight loss. What was revealed to me with every single visit was how clueless I was into the realities of this family’s lives, because I didn’t grow up in that particular neighborhood.
And with every suggestion that I provided, there was a counterpoint by the mother that absolutely made a lot of sense of why she couldn’t follow through, such us, well, the fresh fruits and vegetables really weren’t that much in the neighborhood. She couldn’t afford them.
The physical fitness activities, there really weren’t that many and, if there were, she would have to travel and she didn’t have money to do that to send her kids.
And then the violence within the neighborhood was so much, not only in the neighborhood but also in her building, that she didn’t feel comfortable having her children outside. I understood that, but I also became very aware of my ignorance.
It was the first time that I realized that bad health had very little to do with people just being merely lazy or lacking motivation. That was the dominant narrative in medical culture about poor and black and brown people, which it still really is today as well, as if it was scientific evidence. And the reality is that where my patients lived had way more influence over their health than I could as a physician within a doctor’s office or the hospital.
Aletha Maybank shares her story at Caveat in February 2018. Photo by Nicholas Santasier.
So I had to really begin to grapple with, now, I’m part of this institution that at times is uncaring, perpetuates racism, doesn’t see people for their humanity, and surely doesn’t advocate on their behalf, very similar to what I experienced as a child by the education system. As a black person, as a professional, as a physician, I had to reconcile a conflict that I did not know people in the way that I thought I did, and that these assumptions that I made were actually more harmful than they were helpful. It was this experience along with many others that led me down the path to say that I wasn’t going to practice medicine anymore.
So I finished residency, because I did. I bought time for two years and I worked as a hospitalist. Then one day, I got a call. This path opened up that I totally didn’t expect. It was a friend of mine who said, “Well, there's this vacancy that’s open in this preventive medicine public health space,” and I had never heard of preventive medicine public health and other residency that’s out there, but I remembered my public health roots as an undergrad. Then when I heard they actually pay for your Master’s in Public Health at an Ivy League school, I was like, “I’m on board.”
So I signed up and I took the position. It opened many doors since then. When I was a resident in preventive medicine, there was this emerging field of health equity and health disparities or health justice work that was happening across the country. So I decided to focus and saturate most of my time and effort within that space. My practicum work, all my rotations were in health equity.
There happened to be the first black health commissioner of a local health department that was close by. He heard about my work somehow or another. He called me up and he said, “How would you like to start an Office of Minority Health?” Those were also popping up across the country. It sounded scary and cool all at the same time, but the reality was I was still a resident.
But I approached my program director and she said, “Cool. Let’s work it out.” I did both for a little while, but it was the absolute best professional decision I've made to my life today. It landed me squarely in the space of doing public health, health justice, advocacy and really has created this foundation that I can do what I do today as the founding director of the Center for Health Equity in the largest and considered most premier urban health department in the world, the New York City Department of Health.
I love my government role. I love my day to day. My day to day is all about working to change the narrative around what creates health. It’s also about transforming systems and institutions similar to what I grew up in to become an anti-racist, multi-cultural organization. That’s the language that we use.
So my life experiences and all my skills have now come to this crossroads and the forefront of health equity so I’m very clear that my path as a physician has been completely unique. I’m also very clear about the blessing that I have for my personal, my passion, my professional and my political to all be aligned at this moment. And I’m mostly clear that my destiny with science has been and will continue to be cultivated by my mother’s advocacy and protection, my own yearning for safety and dignity, and a steadfast commitment to validating the worthiness of myself and others.
Thank you.
Part 2: Joselin Linder
So I’m laying down in front of these three arguably hot guys and they are discussing whether or not to shave my groin, just the right side, but it’s a medical procedure. I’m actually being prepped for a liver biopsy and I’m on a hospital gurney.
The reason they're discussing my groin is because, other than the obvious piece of that sentence, they have to go in through your jugular and then thread a radioactive wire through your heart and into your liver. But if for some reason they can’t access the liver that way, they wanted a second access point in the femoral vein in your groin. So they were discussing whether or not to do that.
But we all kind of have this moment altogether because I was totally wide awake while this is going on, while this conversation is happening. I was the kind of awake that comes from having had a very good night’s sleep the night before. It was mostly because I wasn’t even a little bit scared.
I know what you're thinking. Like they don’t just do liver biopsies. There has to be a reason. But I understood something that I feel like even my doctors didn’t. I had a rare genetic disease. It was so rare that only fourteen people had ever had it before me. And twenty years earlier, my father had started to fill with this fluid called chyle, which is made up of lymph and emulsified fats and protein. The problem is if you're a leaking fats and protein you're not digesting it. So, over the course of three years, my father slowly starved to death.
We learned in the subsequent twenty years that there had been other people that had had this similar disease. One of whom was my father’s uncle, my great uncle. He had died in 1961 at the age of 34 of a very similar disease. In fact, he had been studied at the National Institute of Health for ten months, so we had some information.
Over the course of twenty years, this team of researchers at Harvard, the Seidman Lab, had basically put together that the gene was X-linked. Just very quickly, your genetics lesson for the month, men pass male children a Y chromosome, typically, and they pass girls an X. My sister and I we’re not boys so we had inherited this bad gene.
We also understood that in women it presented differently. You had different symptoms over a longer period of time. At this point, I had already started exhibiting symptoms. I had some lymphatic swelling and also my portal vein had just shriveled up and stopped working. It’s a vein that runs through your liver. It’s a major channel. What ends up happening is collateral pathways formed throughout my digestive tract and they're dangerous. They could burst internally and cause serious problems or even death.
So my doctor was like, “Let’s try a liver biopsy.” I was like, “Okay. It can’t hurt and I never had one.”
Then he said something else interesting. He said, “You don’t even need to be under anesthesia for this.”
I was like, at the time, I don't even know. I was like, “That sounds amazing.” So I was like, “Okay.”
So I show up and here I am. I’m wide awake, totally confident and not about to be medicated anytime soon. The four of us, me and these three guys, are realizing that if I get shaved, I’m awake. I’m hanging out; we’re all hanging out.
So they're like, “You're good. We’re gonna just leave it on.”
I’m like, “Thanks. Thanks, guys.”
So we move on. The doctor comes in. He's like, “Hey, Jos, what kinda music do you wanna listen to?” Like this isn’t already a horrible day.
Here’s the thing. If I’m in my car alone, I basically listen to whatever is on next. I'll be like seek or next, I’m like next, next, next. That’s what I listen to in my car. So to have to answer this question quickly felt very overwhelming to me.
In the last five years, I've had time to think about it and you want one of three things in your music during a liver biopsy. You want either to be soothed, your doctor to be calm, or to look cool in front of everybody in the room. I realized to calm me it’s The Kings, and for my doctor it’s Sade, and for it to be cool it’s Lauryn Hill, but I picked R.E.M. which is like no big deal.
R.E.M., they're fine. The fact that they are the soundtrack to my liver biopsy is so weird, but there it is. So R.E.M. comes on and the procedure starts.
The doctor threads the wire through my jugular. So it was numbed. It doesn’t hurt but you can feel the pressure. You can literally feel it moving through your body. Then as it goes down, you feel the pressure moving downward. It felt like I had a wire hanger going from shoulder to shoulder. If I had been standing up I would have had amazing posture.
Finally, things are moving along and the doctor, all of a sudden, his words change, his voice becomes clipped and urgent and he's like, “Joselin, be still. I don't know what’s going on. What’s happening here?”
I am in a state, suddenly, of abject terror. I’m so afraid and I’m freaking out. R.E.M. is like, “Stand in the place where you are,” and I’m like, “Yes.” Then they're like, “Now face north.” I’m like, “No, I’m staying right here. I’m not moving.” I’m so still.
Then as quickly as it started, it stops. He pulls the wire out and he doesn’t say anything and I went home and finished my work day.
A couple of days later he calls and I learn two things. One, my liver is, and I quote, gorgeous. And two, the doctor didn’t understand why the pressures in my abdomen didn’t make any sense. The best I can do to sort of explain this to you guys is the heart pumps and there should be a correlation between the pressure then that fills that is if the blood is moving through your body. So there should be a correlation between your heartbeat and your blood pressure throughout your body. This was not happening in my abdomen and nobody understood why.
So he asked if I would come back and undergo a second procedure. I was like, “Sure.” A couple weeks go by and I showed up for this procedure. And because nothing can ever be easy at the hospital, I had to pee in a cup but I couldn’t. So if any of you have ever been able to be pregnant and had a medical procedure, you know you have to take a pregnancy test. I tried to pee for two hours but I was totally dehydrated. It was a nightmare.
Finally, as lame as that sounds, I came out and I just kind of implored them. I was like, “Look, my marriage is great, but ever since this portal vein thing we have not been having a lot of sex. I’m not pregnant. If we could just move this along I would be so grateful.” And they said okay.
Just so you know, a couple of things were in place at this point. Totally shaved, Sade, and all the drugs. Like every drug that I could possibly have. So that was awesome.
The doctor comes in. They do the procedure. Everything is fine. A few days later I find out two things. The first is that because of our gene, scientists and doctors are learning something that we kind of knew but we didn’t really know that much about. Our livers sort of have their own heartbeat. I mean this like at a much smaller level. It’s nothing like your heartbeat. But the portal vein actually channels blood with its own rhythm. And because my portal vein had shriveled it was no longer doing its part in the body and therefore my blood pressures weren’t aligned.
The second thing I learned is that I was pregnant. This is problematic on a number of levels. First of all, I had just undergone a radioactive procedure, but the second thing was I had a system of dangerous gastric varices running through my body. When you're pregnant your blood supply actually doubles.
I was told that I had a one in four chance of dying if I carried this baby. I was also told, even worse that scared me even more, that if I tried to have this baby there was a great chance I can miscarry or that the baby would be born prematurely or even very sick.
So my husband immediately was like, “I just don’t feel good about this. I don't think we should do this.” It wasn’t because he didn’t want to raise a sick child, but he didn’t want to lose me.
The problem was I was 37 and I was like, “This is my baby. I’m gonna have this baby.”
So we decided we weren’t really going to talk about it until I underwent a procedure called the CVS, which was what was available at the time, and it could test an embryo in its earliest stages to see about its genetic makeup.
Joselin Linder shares her story in New York. Photo by Nicholas Santasier.
I scheduled the appointment. The day before, Hurricane Sandy hit and NYU was unreachable. I couldn’t find anything out. So just to explain this, if you have a rare genetic disease that doesn’t even have a name, you can’t just call somebody else and say, “Hey, can you give me a CVS and find the gene for cystic fibrosis,” or what have you. You don’t have the language. I needed to reach somebody and I absolutely couldn’t.
As the days went by, the thing was I was incredibly early in this pregnancy and I just kind of felt like if it kept going, if each day went by, I wasn’t sure I would be able to do anything about this pregnancy. But the other thing that started to occur to me was that I had actually witnessed my grandmother as she stood over the deathbeds of two sons. I had always thought to myself I will never do that. I have a choice. She didn’t have a choice. She didn’t know. But I knew.
The other thing is, just to give you a little bit of background about these rare genetic diseases, when you think about a disease like cystic fibrosis, which is another monogenetic disease, scientists believe that gene first mutated in Europe 52,000 years ago, which means that it’s been more than 3600 generations. That means that more than 100,000 people live with this horrible disease and hundreds of thousands more carry it.
Our family had had a gene mutate 120 years ago in my great, great-grandmother. Five generations later, there were only this few of us and we had an opportunity that was kind of incredible. It’s like we maybe weren’t going to be able to cure this disease, but we might be able to stop it.
I finally decided that I had to terminate this pregnancy. My husband and I agreed. We made the appointment and we did it. I have to say I have no regrets because, today, there are 25 children in the sixth generation since our gene first mutated and none of them has the family gene.
Thank you.