Meet...Samantha — Uncurated Space

Meet Samantha

I started this space to get people talking about issues they hide from the world…those raw areas of life that feel too complicated to share…the parts we pretend don’t exist in public spaces. Enjoy this walk through a sliver of Samantha. This is more or less how the conversation unfolded with some omissions for conciseness and clarity. “Ums,” “uhs,” and “likes” are edited out to protect the guilty.

Samantha Williams (SW): Do you remember when I diagnosed your OCD?

Sophia Rousseau (SR): I do remember that… I didn’t like you very much for that, haha, because you tested it on me—you were all “I have a theory!”… The scientific method! On your sister!

SW: But then I said, “We have to help her.”

Well, one of the places that we could start, I think, is… remember when you said, “We all have these fractured things” and all of that stuff? I was gonna be like, “I don’t! I don’t have those fractured things anymore.” But I do. In some ways, navigating stuff is a lot easier now because I just can’t be bothered to care too much about things that are outside of my control, or other people’s stuff because either I’m dealing with my own, or I just don’t see life in that way anymore.

I feel very changed since the surgery, and even some of my hang-ups about…responsibility, and you know, having to fix things and make things right for other people and all that stuff. Some of that’s gone. I don’t know if it’s the effect of the medication and it’s blunted my emotion, but I cried like a baby at the end of Hamilton yesterday. So I think I still have emotions, but I feel differently about things.

SR: I want to back you up a little bit… why don’t we talk a little bit about the surgery? Because also the process of you getting a diagnosis was mentally draining–-a case where you were right and [the doctors you saw] were wrong—and then all that’s happened to you. That also kind of shifted your perspective. So why don’t you start back at that point?

SW: I so like that we’re doing this. Thank you, Sophie. So, yeah, I think, I wish I could go back like into my files and see the first doctor I saw because I was gaining weight—more than normal. I’d always been the biggest one in our family, and when I was high school and the first two years of college, I sort of got to my heaviest point, which is about 225 pounds. And then I lost weight and for more than a decade—just sort of oscillated between 165 and 175 pounds.

And of course, because our world is stupid, I thought that was enormous! You know, I just got a Google reminder of a picture from my friend Ana’s wedding in 2010. And looking at the picture of that tiny girl! At that wedding! She still thought she was just enormous and unlovable, just… we waste so much of life with this shit!

After a while though, I started creeping up from my normal “high weight,” and I went to CrossFit and was lifting weights, doing CrossFit three times a week, and sort of semi on a diet, and was still gaining weight. The CrossFit instructors were so puzzled about why I couldn’t lose any weight. And then I went to go see a holistic doctor who was baffled that I couldn’t lose weight and that all of my ratios were out of proportion, like water and all this stuff, and I just kept gaining weight.

And so I saw an endocrinologist and he told me that some people are just looking for excuses for why they get fat. And I was like, “ok,” and since I already have this dread of being like a girl who cried wolf at doctors in particular—that anxiety of going to doctors and like appearing to be a hypochondriac, or am making stuff up—so he sort of shut me down for a while.

And then of course I injured my foot and they said that I could just either live with it or that the real solution was surgery, and I decided to put that off for a while. but during that time my foot wasn’t at 100% so I definitely kept packing on weight. But I still was at a weight where, I mean, just in the big scheme of things, I was fine, you know? Like, my body was fine, there was nothing wrong with me. But all these doctors, all they wanted to talk about was my weight, but I just knew something wasn’t normal.

And then I started to get really bad hormonal acne. And I thought that was just like a thing from gaining weight. And then, one day I noticed that I was starting to get more body hair. And the hair on the top of my head was thinning, and I noticed I started to bruise really easily. No matter how much weightlifting I did I never really got stronger… I moved to New Orleans, went to a gym there, same story. Couldn’t put on any muscle, couldn’t lose any fat. And I was just like, there’s just too many things, and I looked up a lot of things, obviously, and one thing that just kept coming up was this rare disease called Cushing’s disease. And I really, really struggled to ask a doctor. I finally asked one doctor in New Orleans, and she just looked at me, didn’t examine me, didn’t ask any follow up questions, she just looked at me and said, “You don’t have Cushing’s.” And I was like, “oh?” And she was like, she was like, “yeah,” and I was like, “Oh, is there like a typical, like you can tell by looking at me?” She was like, “Yeah, you don’t have Cushing’s.”

And so then… something really wasn’t right, and so, and for me to press back, push back on medical opinion, I have to really know something’s not right, and so then I went to see another doctor, pushed to find another doctor.

My friend, Kathryn, recommended a black woman doctor, and I told her what I was going through, and she said, “Well, of course we can test you for your cortisol, let’s see.” And then the test results came back, and she said, “Well, I don’t know if you’re gonna be happy or you’re gonna be sad, but you were right.” And I was like, “Well, I enjoy being right, so yes, I’m glad. At the same time, what does this mean?” And she was like, “Well there’s lots more tests. You have to go see a special endocrinologist.” So she sent me to another doctor, did more tests, did an MRI, found the tumor that was in my pituitary gland, benign, but that was causing the Cushing’s disease. I started researching and found that the rate of remission for Cushing’s dramatically increases with the skill of the surgeon and where you have the surgery. And so I found that Emory had one of the best centers in the world for pituitary surgeries, and so that’s where I went.

SR: Ok, so much to unpack there, but I definitely want to go back, because I want to know the timeline of all this. When did you first start noticing symptoms, and when did you get the surgery? And then also, you mentioned that the doctor who finally diagnosed you was a black woman. So could you tell me the races and genders of the other doctors who didn’t even do any tests?

SW: I’m pretty sure I saw that first endocrinologist around 2016, because that’s when I noticed: “Hey, my weight is… it’s up from where I normally am, and I don’t think I’ve changed my lifestyle that much.” And I mean, you know I could have. You know? There were all those things that I could tell myself, “Oh, it was just my lifestyle,” and all this stuff… so I think that was around 2016. And then I moved to New Orleans; and in 2019 I joined the gym there where I still, despite kickboxing twice a week and doing CrossFit type exercises, could not gain an ounce of muscle or lose any fat. And then, I decided to have the foot surgery, and then after that, in 2020, late 2020, is when I saw the first doctor. So, the endocrinologist that told me I was just trying to be fat, or just trying to find an ex-… a reason for why I was fat, was in 2016. He was a white, South African man.

SR: Hm, that’s a whole other issue.

SW: WHOLE other issue. And then 2019 at the gym, and then 2020 saw the head of bariatric medicine at Ochsner in New Orleans, and she was a white woman. And then found the black woman who let me do the tests that I needed, and she referred me to an Asian woman, who was an endocrinologist, who took me seriously.

SR: That is such a journey… between 2016 and 2021, you saw how many doctors and didn’t get any good answers?

SW: No, I mean, countless ones. I mean, I saw that, I saw a white, South African woman, who was the holistic doctor who tried to help and didn’t know what the heck was goin’ on. And then I saw the different doctors for my foot… and then I went to—I saw a dermatologist for forever about the hormonal acne and she had me on all these over-the-counter hormonal medications to try to fix that… it was just sort of accepted that women as we get older and as you get fatter you can get hormonal acne. And then I didn’t have a gyno… I saw a gynecologist and they said… they didn’t see a lot of cysts ’cause another thing it could have been was “PCOS.”

SR: Samantha, you know, I gotta tell you, you described having really distressing symptoms over the course of five years. The weight gain, the hair, the acne… you know, one thing that I’m also really interested in is the impact of our bodies and our appearance on our self-esteem… and you also, I kinda wanna tie that into your fear of confronting doctors about what’s going on with you. How did that, you know, impact you going forward?

SW: Well, I mean, honestly Sophia, what we could talk about for, for hours that… I mean because right after the surgery, there was a period of time when things were just bad and I couldn’t see the value of the surgery, and then one day I looked at a picture of myself before the surgery and realized how different I look now, and I was like, “holy shit” — the surgery was worth it because my face back then showed me that I was sick, and that, my body, my spirit, knew that I was sick. When I moved to New Orleans, I think you know, I was still suffering with some depression from the years before. I was having a hard time moving back from South Africa, not knowing where I wanted to be, missing Dad, not knowing where home was and all this stuff, and you know, just not sure how I was going to get back to Alabama, not knowing who I was.

But then I got to New Orleans [pre-surgery], and I fell into a SHELL. The pandemic made it worse, but it did not cause it. And looking back it’s because, how can you be out and about and trying to date and meet new friends and make new professional outreach and stuff, when you don’t even believe it’s you doing the asking? I didn’t recognize myself. I didn’t look like myself, I didn’t feel like myself.

One part of me was trying to tell myself, “You do want to date. You do want to meet more people. You do want to get out of the house.” But then the part of me that knew that I had physically—physiologically—deeply changed, was like, “No you don’t! Who are you gonna date right now? You don’t even know who this is that you’re saying, ‘Hi, my name’s Samantha.’ What kind of professional stuff? You don’t even look like and feel like the you who can go out there and make these things happen.” I shut myself down on the subconscious level knowing that I wasn’t ok.

SR: The human brain… it is tremendous the way it can kind of have that compartmentalization for you… on like some level you knew something wasn’t right, but on another level, you’re fighting with yourself almost. You’re like, this is what I’m supposed to be doing, you know, I’m this age—

SW: “Supposed to be doing.”

SR: And that is what trips us up all the time, that “supposed to be doing.”

SW: Yeah.

SR: It’s crazy, you know? But, but again, even still, you knew something was wrong with you and you advocated for yourself, and you kept going to doctors, and that’s incredibly hard. You know—I know you know! — I was just recently pregnant, obviously, and I, from the moment I got pregnant I was terrified because I know black maternal health is not really treated that well in America. Black maternal death rates are higher than any other demographic… accounting for, you know, race and language, and your status… class, but then, look at Serena Williams. She almost died on the table. A wealthy black woman can still almost die on the table, and it’s, it’s horrifying.

SW: It is.

SR: So, how do you advocate for yourself in a system that doesn’t always want to advocate for you back? And that guy who just told you, “Oh you’re trying to be fat”… you also hear about the “fat bias” in medicine… I was told by my doctor I was getting too fat…

SW: Absolutely.

SR: It’s like they want to blame everything on your weight gain.

SW: I mean, I went to—you were with me, actually, when I saw that endocrinologist—no, the gastroenterologist! for my acid reflux, and I told him I didn’t want to be on medication for acid reflux for forever, so what’s the plan? I wanted him to talk to me about what foods to avoid and sleep and all that stuff, and he was like, “Well, the main thing to do is lose weight.” And I turned to him, like, “Dude! I literally started getting acid reflux when I was 50 pounds lighter than this! A whole 50 pounds lighter!”

A skinny chick got it! Now, I’m overweight… much bigger, and I have acid reflux, but I’ve had it for YEARS when I was tiny! So… yes, I can work on the weight, but also… that is not the only factor! And it’s just, it gets really annoying. I mean… one of the things that annoys me and will always annoy me is that when I got to New York after living in South Africa for many years, I had just injured my foot while jogging. I had tendonitis and was in a boot for a couple of months. And then I went to see the doctors in New York about my foot. And at that point I was about 205 pounds, which is still 45 pounds lighter than I am now when I finally had my foot surgery.

But those doctors told me, “Oh you wanna wait until you lose some weight because you’re putting so much extra pressure on that foot, so you wanna lose some weight and then have the surgery.” But I waited three years to try to “lose weight” to have the surgery and gained another 45 pounds; you know what I’m saying? Put myself at risk for all kinds of other things because I couldn’t really use my foot the same way.

Couldn’t do all the stuff that I love to do. I couldn’t jog comfortably, I couldn’t do all the exercise that I generally loved, so I just gained, and gained, and gained weight. And then I eventually still had to have the surgery!

At this weight! And so, if they had just shut the hell up and just helped take care of what I was working towards then, I probably would be at a different weight now and my foot would probably be healing in a different way.

SR: It’s maddening. You know? It really is. It kinda goes back to what I was saying in the beginning… how we see ourselves, how we present ourselves, and how others perceive us… all these things matter. You know? How you look, the weight you’re at, the kind of clothes you wear. All these things, these unconscious biases, it’s kind of like the argument for the police, like “one bad apple.”

Well, the problem is, it’s not that it’s one bad apple, it’s that these biases have infiltrated every level of society, and people who have these biases don’t just stay in their shells in their caves—they are doctors, they are lawyers, you know? They are judges, they are bankers, they are cashiers, they’re everybody! And so, you carry these biases with you into every facet of your life and your work and who you interact with, and it’s just, it’s, *shrugs and looks despondent* it’s, there’s just such a rot in the system and we have to clean it out. And I don’t know how to clean it out, but I have the starting point.

The Big Hole, Kimberly, South Africa (2009)

SW: Yes! Yes, you do.

SR: But, ok, so, we… you were talking about how after the surgery… the impact and how you felt like a different person and I had you backtrack to tell me all about the surgery, which I do appreciate. Then we got into a tangent about…

SW: Well, I told you about the sickness, I didn’t tell you about the surgery. That’s a whole other thing. I don’t know if you wanna get into that.

SR: Well… if you want to just… you can even give just a brief overview of the surgery if you’d like to. If not, we can just leave people wanting more.

SW: Well, what was your, what was your question gonna be? Cause maybe I can weave it in.

SR: …so my question was really just, you know… I kinda want to get into who you were before the surgery and after the surgery, because we’ve talked pretty heavily about, you had like 5 years of doubting yourself and feeling like you couldn’t lose weight and wondering why you were doing all this work and not losing weight, and that delayed gratification in your journey sounds super soul crushing. I know that more than anybody, and so that’s something that I kinda want to get into.

But alternatively, we could turn to your feelings after the surgery. Whatever space you feel like inhabiting right now, I’m willing to do that with you.

SW: …Well, I mean, I would, I haven’t thought that much about… who I was before and after… I haven’t put it to words yes. So, this could be helpful?

Because… in a lot of ways… haven’t changed. I’m still fighting the same internal conflicts that I was before. I’m still fighting between, “I wanna go out, and I wanna talk to people, and I wanna see people!” and “I wanna be at HOME!”

I’m still torn between… what I want, what I wanna do… all those things. But… and, in some ways, like, now, I feel like I’m… moving through the motions. And I like these motions better than before when I was still, sort of fighting with what kind of stuff do I want to be doing. I’m glad to be in Alabama, I’m glad to be working on what I’m working on.

But I do sometimes feel like I’m moving through the motions because I think the bigger questions in my heart are still not answered.

I’m looking for, and especially after the surgery, I’m looking for answers about God, I’m looking for answers about meaning, I’m looking for answers about children and family and real joy outside of work. And I’ve been on the path of real joy outside of work, but right now, it’s just because the soul stuff that I’m looking for can’t be answered by work. A lot can—I enjoy working. I enjoy working hard, I enjoy complicated questions, I enjoy grinding towards impact, especially around what I do, which is around education and its equity and justice. I enjoy grinding towards that.

Because I think it requires… good brains and strong hands, you know? You gotta do the work and you gotta think about what’s the best work, and you gotta do it! And I like being able to do that because, you know, this shit’s gotta be done.

But I’m hollower now because… I have the job that I want, and I’m still not sure that my life is good in the sense of, not like I’m not a good person or like all those things, but that like I’m actually, fully living. And I didn’t think like that before the surgery because I thought it was just a simple answer about work. And now, I’m really exposed to life’s ugly side.

To sickness and death and tubes and PICC lines and ports and nurses and cold hospital beds and like, my body, just… almost like flipped inside out, right? Like, none of my—nothing that the pituitary gland controls—works now, post-surgery. Life is really fragile, and I’m at the place now where I’m not seeing the beauty in that, right? I was talking to, I think it was… to Marilyn the other day, and was like, you know, well, what’s the alternative? Should we live forever? And I cannot imagine living forever. What is there to do? You know… you’d just be so bored with everything. And then, so the thought that we don’t wanna live forever, we want to just embrace this life we’ve been given… it should lead to a sense of joy and preciousness with the time bound of what we have, with the fragility of what we have.

But to me it’s at the point where I’m still just being like, ok well, whatever makes meaning of this time on Earth right here, right now, I’m not doing it yet.

I can’t believe I just like, put that in there!

SR: No! No! That’s great… it’s what you’re feeling, and it’s real, and, you know, we tend to suppress these feelings cause they scare us… and so, Samantha… just a second. When we started… like I said, hardworking, reliable, smart… does… when you think about the Samantha who you’re feeling like now… that feels hollow? And feels like you’re… who feels all these things that you just told me? I mean, are those the words you would use right now? Or… are those… do you see this person being something else?

SW: I see hard working because I am working HARD because there’s a lot to do. And because it’s my responsibility, I see the problem, I know we gotta tackle it, and it’s not going to be easy, and that means I gotta get to work, and I’m good at that. And that’s what I’m doing right now.

SR: Excellent. What other words would you use to describe yourself right now? When you’re thinking about these emotions, not when I’m asking you in an email, just off the cuff. Like, now that you’re in it, we’ve been talking for I guess 30 minutes, you know, you just told me some really intense emotions that you’ve been having over the past five years. So… how do you describe that Samantha right now?

SW: … Lonely. And… cynical? Not, I mean, “cynical” is too strong? Skeptical? Skeptical. Questioning… questioning the good… and… but ever optimistic, right? Because I feel like I will get through. I mean, right after the surgery, I was trying to get through hour by hour some days. And when I could finally walk again on my own, I would just walk around our mom’s house—the apartment complex where she lives—I would just walk around in just, slow, sweaty circles, because it was July in Alabama, and I was sweatin’ and walkin’ slow, and I couldn’t hear out of my left ear, and I still couldn’t taste or really smell. I would try to put my earbuds in, ’cause music sends me, and I would try to put my earbuds in and couldn’t hear out of that ear.

But I would just sing songs to myself or listen to church sermons and walk and cry. And I was miserable, but I was hopeful.

There was something… there is something! It’s just the challenge is that I can’t see it or feel it right now. But there is something! And I am still seeking and moving towards that and, I mean, I tell you what… when I think about these days, what really makes me happy… Marilyn walked in on me one day… I talk about Marilyn so much, in case folks who are reading or listening don’t know, it’s our little sister and she also lives here in Birmingham.

But she walked in on me one day just watching videos of Bryce [my nephew], and she was just like, “Is this what you do?”

And I was like, “yeah.” I watch videos of Bryce, I look at pictures of [your kid], and I can’t wait till we’re together again. I’m missing that love and joy in my life right now. And so, I think… I think it’s mixed up in… you know, I’ve gotten to 37 and done so many of the things. These are not things that I could have laid down and dreamed about when I was a kid… the things that I’ve done. And it is simply…

SR: Like what?

SW: Moving to South Africa for nearly a decade. Working for Oprah. Going to Georgetown, going to Harvard. Traveling to, you know, every continent except Antarctica. You know? Going on these vacations, seeing the world, going to the beach… doing things. Working at an incredible, international NGO… leading a region for that NGO. Working with the CEO of that NGO. It’s been good! And this is stuff that I really couldn’t have dreamed of. But my life right now is incomplete, and I’m at the point where I’m sort of like, you know, here at 37… would I want another 37 years like this? Not really. You know? My journey can’t be just about me, and I know that because all the work that I’ve been doing since I stepped foot in college has been about kids! My life just can’t be about me. There’s gotta be—there’s a bigger picture. So, I’m looking for that now, and because I’ve seen how awful it can get, I know I want that bigger, better picture sooner rather than later.