Dionne Stalling and Twaina Williams

[00:05] DIONNE STALLING: My name is Dionne Stalling I'm 53 years old, from St. Louis, Missouri. Today's date is July 17, 2023. And Twaina and I are friends.

[00:19] TWAINA WILLIAMS: Hi, my name is Twaina Williams I am 38 years old. Today's date is July 17, 2023. I am calling in from Pittsburgh, Pennsylvania, and Dion is my friend. So, Dion. Just getting started today. How are you? How are you doing?

[00:44] DIONNE STALLING: I'm good. Thanks for asking.

[00:48] TWAINA WILLIAMS: Of course. So can you just tell me a little bit about what motivated you to start your nonprofit organization, rare and black?

[01:01] DIONNE STALLING: Well, um, I never thought that I would be in. In public health. Anything to do with hat that has to do with health, because I got an f in biology in high school because I refused to dissect. I refused to dissect, I think, a worm, I don't know. But she told me not to come back to her class until I dissected, so I never went back. And so I went to college to be a pilot. I didn't have anything to do with any biological science, and so it's funny that my life is how it is now. After being ill for most of my life with different small things, I didn't think that it was abnormal to. What I'll say is, if there was something that would be abnormally happening in a regular atmosphere, it would happen to me. And I never thought that it was, like, a name or anything of the sort, but in 2009, after a bunch of health issues and alternative treatments, I had a hysterectomy, a partial hysterectomy that went awry. I hemorrhaged from that hysterectomy, and I bled for two days. I laid in a fetal position in the same spot for two days until I was belligerent with the hospital staff because they kept telling me when I moved and I was vomiting that I was having gas. And they took me to get a MRI, and it showed that I was hemorrhaging. And so I was told to call my next of kin and that they were going to take me into surgery. Now, I don't. You know, I'm in surgery. I'm. The conversation that was had with my mom was that she's not going to survive. She's lost too much blood, and she's not going to live. And when I woke up, my son was holding my right hand. I'll never forget it. My son was holding my right hand, and I had the ventilator was down my throat, and I woke up to all. It was like a bunch of people in ICU and they all turned around and looked at me. I remember this. I know sometimes they'll tell you, oh, patients don't remember this, or that's not this. I know that this was true, right? Because my family told me it happens just the way I remembered it. And I turned around. I mean, I looked out and they all turned around and looked at me like, what's going on? And so what I didn't know is my mom said, well, they told us that you weren't going to survive. So when you woke up and you were trying to talk, it scared us because we didn't expect you to wake up. Wow. That was in December of 2009. And of course, that's the second incision that they made. And the second incision, what I'll say is, I had had multiple abdominal surgeries beforehand. And after every type of surgery, I've always got infected all the time.

[04:49] TWAINA WILLIAMS: Wow.

[04:50] DIONNE STALLING: Every single time. And doctors will say, oh, you're not keeping your wound clean. You're not giving it enough air. We need to put you on antibiotics. Are you sure you're taking all of your medicines? And I would get these reoccurring infections. And so this was no different. And so I was in the hospital probably about a month. I went, this was in mid December. I got discharged from the hospital a little like two weeks into January. It's right before the inauguration, because I had some people that I was taking to the inauguration, and that was in January. And from January of 2009, I had the surgery in 2008 and 2009. From that point on, from January until May, I probably was in the hospital four of those five months total, because I would go in the hospital a two days or a week or more and go back home and have to go back into the hospital. And so, um, the doctor that I was seeing wouldn't readmit me. And my home health care nurse kept saying, you know, your stomach, I think you're infected. She was like, I smelled you from the car. And I was like, you smelled me? Like, infections have a certain smell to them. And when it's cold outside, you can smell things. When it's sub zero temperatures, which it was when she was visiting. She was like, I could smell you as soon as I got out of my car. And I need for you to talk to him and I need for you to tell him that he needs to open you back up to figure out where this infection is coming from. And of course, I went to him. They had been my doctor for 20 years. I trusted him, and I expected it to be no different than I had gone before. He would listen to me, and I finally told. He was like, well, I don't need to go back. It's just, you know, you always don't respond well. It takes you a long time to heal. Which was true. Right? And he said to me, well, you can get another opinion. And so I. And I saw every ob GYN in probably in north county of St. Louis. St. Louis is kind of. Is segregated to say especially. That's a whole nother story. But I went to every obgyn in north county. But what people don't know, or most some people do, doctors know this. Doctors will not go behind another doctor when it's surgery related. They'll tell you back to the surgeon that performed the surgery, performed it, right? And everybody kept telling me the same thing. This is a result of surgery. You need to go back to the original surgeon. And so I had a friend that lived in suburban Washington. She's a physician. And she told me what to say. She was like, I want you to go into his office, and I want you to say this to him. And it was a lie, but I went and told the fantastic lie. And she said, he's going to open you back up. He's either going to open you back up, or he's going to send you to somebody that's going to help you. And I was like, okay, cool. I'm going to go in here and I'm going to tell you. I'm like, I'm already. And I go and I tell this fantastic lie to him. And he referred me to another doctor, and that doctor was a gynecological oncologist. Now, I didn't know that, but he sent me to him. And the doctor, I don't remember if it was a CAT scan or MRI. I can't remember what it was. But he said, I don't know why he sent you to me. He was like, I help women with cancer. Like female cancers, right? That's not what you have. He said, but what you do have is you have a blocked bile duct that if you don't get fixed as soon as possible, you could literally lose your life. He said, it could be fatal. And I was like, well, I just started a job. Like that day. I was like, well, Kenny, wait until I get through training.

[09:36] TWAINA WILLIAMS: Absolutely not.

[09:39] DIONNE STALLING: And he was like, no. He said. I said, okay, so are you going to do it? And he was like, that's not my lane. You need a general surgeon. And I was like, he said, and you need to get it done as soon as possible. I was like, can it wait like six to eight weeks? Cause I just need to get through the training to get a job. Cause I've been without a job all this time. I have two children that I'm a sole provider for. And so he said, no, you need to be seen as soon as possible. And so I was dumbfounded because I had already gone to all these doctors, and I was like, okay, as soon as I tell them what is going on, they're really gonna say, this is still surgery related. We're not gonna touch you. All of my critical skills were, like, working overtime. I'm like, okay, what do I do? I need a general surgeon, not an ob gyn. I don't need a gyn. I just need a general surgeon. But I'm not going to go to the hospital system that I'm in now because I really. I don't think that I'm getting the best care. And where can I go where I'm going to get the best care? And I was like, what's the richest zip code in St. Louis? Let me. So I'm googling, right?

[11:00] TWAINA WILLIAMS: Which is bad that you even had.

[11:02] DIONNE STALLING: To think that way. Wealthiest zip code in St. Louis, missouri. That zip code is 63017, which is Chesterfield, missouri. There is one hospital in Chesterfield, and that's st. Luke's hospital. And so he said I needed a general surgeon. So I get on their website and I look at the chief of surgery is going to do my surgery because I need the best at this point. I've been in the hospital all of this time, and there's no telling what's wrong with me. I need the best. And so I called the office of the chief of surgery, and I'm crying by this time, because the doctor was like, if you don't get this done, you could die. And I was like, I don't. You know, I have kids. They're dependent on me. I can't. And so when I called, she said, he doesn't perform that type of surgery. So then I was like, like that, hyperventilating. And so she said, let's. But it's a doctor that we have that does that here. I said, well, will he see me? And she was like, I believe he will. I said, no, you got to make sure before I come out there. And she said, make sure you tell him that I had surgery in December.

[12:27] TWAINA WILLIAMS: December.

[12:28] DIONNE STALLING: And she said, hold on a second. And when she put me on hold, he got on the phone, and I explained to him what I was dealing with and all the hospitalizations I had. And he was like, that's not an issue. I said, are you sure? He was like, yeah, I'm okay with. He said, I'm pretty good at what I do.

[12:52] TWAINA WILLIAMS: I know.

[12:52] DIONNE STALLING: That's right. Confident that I can help you. And so he was like, let me put you on hold, and they're going to get you scheduled. Got me scheduled. And fast forward, we get the surgery scheduled. And I know I didn't. I haven't forgotten the original question. This is a long story, but it's going to take me to how I got to rare and black.

[13:12] TWAINA WILLIAMS: Listen, I'm intrigued. Bring it.

[13:16] DIONNE STALLING: He said, we're going to get you scheduled and get you because we had talked about, this was right before my 50th birthday, which was August of 2009. I'm having this big bash. And so we get this scheduled now because I was in the hospital for my hysterectomy due to complications for Christmas. I said, nothing's going to spoil my mother's day. I'm going to get. This surgery has to be after Mother's Day. So it was the Monday after Mother's day when this surgery happened. So I'm all in there. And I was like, do you, you pray? I say, you believe in Jesus. And he was like, I do. I said, we need to pray because I know you've lost some people because you're a surgeon. All surgeons lose people. So I'm not going to ask you how many people you lost, but we. We know. We pray through this one. He and I pray. And he was like, you're going to be fine. And I was like, okay. So I wake up from surgery, I'm feeling good. And he came over to me in recovery, and he was like, I have good news and I have bad news. And he said, what do you want to hear first? I said, I want to hear the bad news first. And he said, that's odd. Most people want the good news first. I said, no, I want. Cause at this point. And he said, I wasn't able to do the surgery. You have a hernia that's blocking your bile duct. And I couldn't do it. And I was like, but I'm feeling. I'm like, I know you cut me because I feel it. And he said, yeah, I opened you up. He said, but you're infected. You. I couldn't see where I needed to go, which goes to the hospitalizations that you've had all this time going in out of the hospital, but I need to refer you to an infectious disease doctor that can figure out why this is happening before we can do this bio reset. I mean, before we can fix this bile duct. And I'm like, but the doctor said, if I don't get this fixed, I'm gonna die. He was like, we're gonna get this. We gotta get this infection stuff under control first. And so he referred me to this doctor, and the doctor gave out. I saw him. He gave me medicine. And you know how things. Cultural things happen? Every culture has them. We, as black people, have certain things that. My family is originally from Mississippi, and so I know a lot of people that are from Mississippi have heard this. So if you get a boil, they tell you to separate the egg white and put the egg white on the boil, and it'll burst. Right? Have you ever heard that?

[16:20] TWAINA WILLIAMS: I was.

[16:21] DIONNE STALLING: Ours was bacon. Okay. Yours is bacon egg white. I've never heard bacon cultural things. So I grew up with you separate the egg white egg from the yolk from the white and take white and put on, and it will bring that to a head. And I almost did it. And it happened when I was taking this medicine. And he called one day, and he was like, I need to see you at my office. I'm like, doctors don't ever call and say some, I must be dying. Like, I'm like, the worst thing that could happen. And that's not even my nature. But I'm thinking that I'm not telling anybody. I'm like, he wants me to meet him. So he got hit by a car. No lie. He got hit by a car the day that he wanted me to come to the office. And so I said, well, I'll just come back. And they were like, no. He said, don't leave. He's at the emergency room. He's gone. He's coming. Don't leave.

[17:26] TWAINA WILLIAMS: Oh, goodness.

[17:27] DIONNE STALLING: Do not leave. So I'm like, but where he got hit by the car was like, 30 minutes from where I am. And I'm like, but he got hit by a car from riding his bike. How is he getting. He can't ride the bike. Like, how is he getting here? So I'm just like, okay, God, what is this? So he gets there, and I'm so worried about him on crutches. He has a cast. He has a gash in his arm. He's an infectious disease doctor, so he wouldn't let them stitch him up. So he has this big gash in his arms, stuff hanging. He was like, oh, it just needs air. It doesn't need any stitches? And I'm like, okay. So he said, with all the commotion, this is crucial. With all the commotion, I almost forgot this. But the boil was against my shirt, and it was irritating it. And I said, hey, doctor German. I said, I need to show you something. And I lifted my shirt, and I said, look at this. This started when you gave me that medicine. It seems like it started, and it's getting bigger. And he was like, oh, my God, I think you have staff. And I was like, staph infection? And he said, yes, don't move. And I was like, okay, what does that mean? Because I've only heard of one person having staph, and they died from staph. So I'm like, okay, what does this mean? He said, don't move. So his nurse comes in. She gets a culture. She was like, somebody's gonna come. They're gonna admit you into the hospital. And I started to cry, and this was in June, and by this time, the time had elapsed. And he said, we're going to figure this out before your 50th birthday. You're going to be fine, but I need to get you admitted. But we got to get this culture done as soon as possible to figure out exactly what this is. And I was like, okay. And so, got the culture done. I have staff and MRSA. So I get to the end of the hallway at the hospital, they have me separated from everyone else because, you know, Marissa, they didn't really want me to have visitors. I didn't want visitors, and they didn't want me amongst people. Right. And so that was the beginning of June, and I was in the hospital with different doctors going to different rooms. You know, it's a big production when you have those type of infections. They, you know, robe, you and all of the things, and I. And you don't get any. Any food. Nothing by food, nothing by mouth.

[20:30] TWAINA WILLIAMS: Yeah.

[20:31] DIONNE STALLING: And I'm a foodie, and I love to eat. A and that was a. We know that. Right, right. So the day that Michael Jackson died, they brought in some pancakes for me. And I promise you, as soon as I got ready to cut into the pancake, the girl came and said, no. Did you eat yet? I said, no. She said, they're gonna. You're having surgery today. And I'm like, what? I said, nobody came in here and told me about surgery. She was like, no, your infection is well enough that we could see what they were trying to do is get that infection so they can open me back up. Well, I guess whatever blood test they did that. Satisfied that. So because I hadn't eaten yet, they took the food. I'm like, so on the tv, it's, Michael Jackson's going to the hospital for whatever. And I'm thinking, oh, it's cool. He'll be all right. Like, you know, it's another whatever Michael Jackson does. Okay, so they were like, well, we're gonna go in, and we know that we need to fix the bile duct, the hernia, and we know that now because of the infection. And the people that I've been seeing at the hospital, they need to remove my tube and my ovary because they're infected. Okay, fine. I was in surgery for 9 hours, and they removed part of my small intestine, my spleen, and they had different doctors doing different things, and then I had adhesions, and so abdominal adhesions are like cutting through cement, and you have to get through that to get to the organs that you're trying to get. So that's what it was, a production. This doctor did this part, and this doctor did that part. And so that surgery caused me to get cut up and down this way. And that infection, that was an infection that carried on for a while as well. And so that infectious disease doctor started to be kind of like my primary care doctor, and I started to see him for years, and one day, maybe four years after that surgery. No, that was in five years after that surgery, because I had had several surgeries between then on different other things. Well, about five years after that surgery, he said to me, have you gotten tested for AIDS? And I said, I haven't had an AIDS test in a while. And he said, let's. Let's see if you have AIDS, because that would explain a lot. And I was like, okay, so we get the AIDS test. I'm waiting. I don't have A's. And he was like, I don't know what's wrong, but let's get you in with an I an immunologist, because there's something wrong with your immune system, and I don't know what it is. And he was like, if I had all the money in the world, I would really study you, because this is mind boggling to me because I've been your doctor for this long, and I've been giving you this different medicine, and it seems you only are responding to intravenously, intravenous antibiotics. And I was like, okay. And so in November of 2014, he referred me to an immunologist, and I was in her office seven minutes, and every question she asked me was. I was like, yes. And she would say, and I'll say yes. And so she said, I think I know what's wrong with you, but have you had a pneumonia and a flu shot yet? And I said, no. And she said, okay, let's do that. And then I need to draw your blood tomorrow at 24 hours after you've gotten it. And I was like, okay. And that was. Their blood was drawn on a Thursday. And on that following Tuesday, they called me back with my first rare disease diagnosis, which was primary immune deficiency. Kind of like primary immune deficiencies are usually immune deficiencies where you don't have part of your immune system or what you have doesn't work properly. And so when I got diagnosed, I sobbed for probably two days straight, because for all the times, even when I was little, that they would question my mom on, well, are you sure that you're giving her her medicine, or are you sure? Because the onus was always on the patient or my mom. And even as an adult, being questioned about how I was, what I was doing, not what was wrong with me, but what was I doing or what was I not doing because I was not being. Having optimal health. When I got diagnosed, after the initial diagnosis, I went to Google university. And I Google University. Everybody goes to Google University. I went there to try to figure out, because the only person that I knew that had PI was the boy in the bubble, David Vetter. His name. I don't like to call him the boy in the bubble, but that's what, people know him by his name better. And he has severe combined immune deficiency, and I have common variable immune deficiency. And I started to learn as much as I could about my immune deficiency and others. And I started to do advocacy work and those invitations. And when I started to do advocacy work, I started getting invited to certain places, different places, different rooms with different types of people. And what I learned was that there was a lot of people that are misunderstood in general in the red disease space, but specifically black people. And so in 2020, in March of 2020, rare and Black's birthday is on March 12. March 12, 2020, I started wearing black as a organization that would be able to educate, advocate, pass legislation, to be able to help people in black spaces understand why certain things happen to them, and to be more involved in the whole spectrum of their care. Because it's an orchestra, right? Like most rare disorders, no matter what it is and no matter what system of the body it. It affects, it's usually more than one practice or more than one I can't think, what's the word? More than one specialty immunologist for my. Like, I see an immunologist for my PI, but because I have chronic. And since that diagnosis, I've been diagnosed with eight other rare disorders, right? And so my chronic inflammatory, demyelinating polyneuropathy is overseen by a neurologist. And so in the bread disease space, I kept thinking, we. And I don't speak for all black people. Don't get me wrong. That's not what rare and black is. And it's not a black only organization. It's not an anti anybody else. I advocate for black people, period. But I also advocate for patients just in general. And anything that you hear me try to talk about or our organization, what we do, anybody can learn from. And a lot of times, it's the education piece that we lack. Like newborn screening. You ask a lot of people about babies. When the babies are born, they just know that the baby comes back, that they take the baby, and they bring the baby back with the sticker on the foot. They don't know what that is, and they don't know what it means. They don't even know how to follow up. And so it was important for me because I'm a history buff, and I like to know things. I like to know why things are happening the way that they are or why a policy is the way that it is. And so that's why rare and black washing created. We're still in our infancy stages, even though we're three years old, but. Cause I could be all over the place. Right. Right. There's work to be done in all spaces. But advocacy, legislative advocacy, and education is crucial for people that are the recipient or that are the patients of the rare conditions, for them to understand what is happening to them and the resources that are out there for them that they may not know how to find. And then also, we focus a lot on policies and procedures that affect them so that when there's. When something happens, they'll know how to react to it, if that makes any sense to you. You know what I mean?

[31:35] TWAINA WILLIAMS: Yeah, no, I do. Yeah. I mean, it totally makes sense, because, I mean, of course, you know, we've had discussions before about, especially newborn screening. But like you mentioned, some people recognize the band aid. Some people don't even recognize that. Right. They don't even know anything was done. So definitely, you know, having an organization like rare and black. Right. That can then help educate others on things that obviously, you've been privy to your own personal story. But then also things that will affect how others move and navigate throughout the healthcare system is extremely important. So I know I'm excited. And I always tell you that the work that you're doing is amazing and that, you know, it definitely, you know, helps others. Right. And the outcome. So with that, can you tell me what, you know, if you had to, so to speak, measure success, right. And the people that you serve, what would that look like? What would that be? All right, so, no, definitely, I appreciate, you know, again, all the work that you do, and especially in rear and black, not to mention just being a personal advocate, but can you tell me, what would it look like? How would you measure success, you know, amongst rare and black, but the people that you serve, how would you measure that? What does that look like to you?

[33:36] DIONNE STALLING: You know, you always say, if I could just help one person, but this is what I'll say. Recently, the summit that we had in April, where I was stressing about the attendance, and I didn't have 100. And so people looking, and all of the things, what I did have was quality programming, a solid schedule, and I had people that got diagnosed with rare disorders because of that conference or because of that summit, they were listening to Doctor Maitland go down. What? See, because a lot of black people have not ever heard of Ehlers Danlos syndrome. And so when Doctor Maitland was giving all of the things that patients that have come to her in clinic have, that don't have anything to do with specifically connective tissue, but have other things. And that that prompted them to go to the doctor, and the doctor had to go and find out, hey, more about that disorder because they had never heard of it. And so to get patients to get diagnosed based off of work that rare and black does is more than I could ever hope for. It's not what I. Even you always, you could be on social media and hear people say that you can dream a dream, but God can dream of you. God can dream bigger, dream than you could ever for yourself. I would have never imagined that something that I. Anti blood, anti gore, anti not doing nothing that has to do with nothing in the lab. I don't want nothing to do with medicine. I don't even have a degree because I don't want to go back. I want a degree in public health, but I don't want to dissect. And that's part of the reason I can't even step out of the class. I would. I could have never imagined. There's something that I, along with the help of God, created would help people be able to get diagnosed with something to help them figure out what's been wrong with them for years. And the two people that I can name off the top of my head are sisters, that both of them had eds and both of them went to doctor, and they have advanced degrees. And we always just thought I, oh, that's how they stand. Or those people, Adobe jointed. That's so cool. Not knowing that all these other things, crashes and stuff like that. It's just mind blowing that something that I'm doing is improving people's lives because it's never ever, that's nothing that I ever thought that I would be able to do. And the other thing is just being able to teach people because teach people something. So if somebody comes up to me and say, I saw where you all did this, or I was part of this webinar, or I read, because we're doing downloadables or handouts, I read this or I saw this, and this prompted me to ask my doctor about this, or this prompted me to leave my doctor. That's good, too, because I want people to know, you're not married to your doctor, and even if you are married to him, you can divorce them at any time. That's success for me. Like knowing that people can just not necessarily be healthy, but just take control of their own health narrative. Yeah.

[37:49] TWAINA WILLIAMS: And I mean, honestly, that's huge.

[37:51] DIONNE STALLING: Right.

[37:51] TWAINA WILLIAMS: Because you, if you don't know, what if you famous saying, if you don't know what's broke, you can't fix it. Right. So to your point, you know, it might not be considered healthy in the eyes of everybody else, but it could be healthy to them if they've been dealing with this and battling with this all this time and now they actually get some treatment or now they actually can get some medicine to help deal with some of the aspects. Right?

[38:21] DIONNE STALLING: Yeah.

[38:22] TWAINA WILLIAMS: So that's huge. And education is key. So definitely I understand that. One thing that I do really want to ask, because obviously the work that you're doing is special, great and imperative. What is something that you're currently working to, to improve? If I can talk today with health equity, you know, for your target audience, what is one thing, if you could think of that you're really working on.

[38:53] DIONNE STALLING: Right now because of how we met? I am working in St. Louis and St. Louis and I, St. Louis, parts of Mississippi and Louisiana. We're doing a pilot program around newborn screening to making sure that black moms and black and underserved moms and underserved communities know what newborn screening is, what its purpose is, how important it is, but not only just the testing, but what a positive screen would be, and to from zero to three to a complete, comprehensive program to reduce the amount of infant mortality rates amongst those populations. Because I wholeheartedly believe that a lot of babies that die, that die within that age range, that have been lumped into, oh, they die from SIDS. Some of those babies, probably most of them have passed away from rare diseases that have not been diagnosed. And black, not just black people, but this is the population that I'm servicing. So I'm speaking as such, and I'm going off of data. I'm going off of just health data. We do not get our children autopsied, so we don't know what they passed away from. If they go to sleep and wake up and don't wake up, we just automatically assume that they had seeds. But I'm convinced some of those children had undiagnosed rare diseases. And I'm really trying to change that, especially in St. Louis, a couple of parishes in Louisiana, and a county in Mississippi.

[41:18] TWAINA WILLIAMS: Okay, well, no. And I mean, that just goes into, I will say probably my last and final question for you, because obviously, you're a wealth full of knowledge, but, you know, not only in your own personal journey, but even in this journey with rare and black, if you could have one wish. No money was an issue. No, you know, barriers were issues. What would your one wish be that would really give again yourself through your own journey and people that you're trying to serve a better quality of life?

[41:56] DIONNE STALLING: I would like for our healthcare system, whether you are private, pay Medicare or Medicaid, be able to be in a proactive health environment if you want to do breath work to keep your stress down, if you want to go to yoga and keep your exercise or go to pilates, you shouldn't have to pay $130 to go to a Pilates class. And you live in the United States because studies have shown pilates will improve this breath work, which I'm a certified breath work coach, because of some. Some physical ailments. But breathing helps me. We shouldn't have to swallow $700 a month pills to help us deal with certain things when there are other ways to do it before it happens. And that needs to change in this country. It's no reason in the world. Chinese people. The chinese people have been doing it for thousands of years. Like, we should not, our healthcare system should not be set up for when we get sick, because that's what it is. It's like when you get ill, but not. You can't get any help until you get sick. So that's it?

[43:14] TWAINA WILLIAMS: No. Well, I definitely appreciate you for all of your wealth and knowledge and for your journey. I know sometimes in parts of it can seem like it's, oh, my goodness, the worst thing in the world, but it's brought you to rare and black, and it's brought you into my life, so I can't be more thankful and grateful for that. So I definitely thank you for all that you do and all that you will continue to do.

[43:41] DIONNE STALLING: Thank you so much, Rhea.

[43:44] TWAINA WILLIAMS: You're welcome.

[43:49] DIONNE STALLING: Excellent. You all thank you so much for taking the time. I just one follow up question, Diana, if it's okay, and then we'll wrap up. I was just wondering, going back a little bit to your own personal experience.

[44:08] TWAINA WILLIAMS: That brought you to starting rare and black. When you spoke about, you went to a lot of doctors who weren't listening.

[44:16] DIONNE STALLING: To you, weren't hearing you, and then.

[44:18] TWAINA WILLIAMS: It seems like you found this one person who was listening to you and got in a car accident and still.

[44:25] DIONNE STALLING: Came to your bedside and was there.

[44:29] TWAINA WILLIAMS: Can you kind of walk through the emotions you felt through that time of.

[44:34] DIONNE STALLING: Not being heard and then that process.

[44:37] TWAINA WILLIAMS: Of being listened to and cared for.

[44:41] DIONNE STALLING: And how that changed in that moment, the emotions you felt at that point? Well, my personality is such that I'm curious by nature. Right? Like, I've always been curious as a little kidde, taking tvs apart and trying to figure out how to put them back together. That's always been my thing. I was never, like, sad or I didn't even. It was never a race thing. But what I. For a long time, I know it was a sex thing. Like, because I was a female, I was dealt with a certain way. And I used to get mad. Like, I. That's. That's my default. Like, I want to fight about everything. Well, I used to until about three weeks ago, because as a result, my head vibrate. Like, I have what they call psychogenic. Psychogenic brain tremors, which cause is from stress. I. But I want to fight about everything. Like, and to be. That's what saved my life. The fact that I laid in the bed for two days. I kept telling them, something's wrong with me, and they were like. And I was always like, the cool patient, we're going to go in there. But until you started acting belligerent, nobody pays attention to you. And so for those. All of those times where I was told things, I always knew it was a bunch of junk. But when I got diagnosis, that's when I think, you know how you can just tell somebody stuff? Just imagine a bottle, like, being an expandable bottle. You just depositing things and depositing things, and then something happens and it explodes. That's how my emotions were, because when I tell you, I cried for two solid days with a diagnosis, because nobody. I didn't know what was wrong with me. Like, I just always knew, oh, when I have my baby, I'm gonna have a C section. That's. I'm gonna have an infection. After the C section started, that was just my norm. It wasn't. I didn't have time to stop and think about it. That was just my. That was my thing. And I'm in therapy. My therapist says, you know, all of that is years of trauma that we're trying to unpack, right? Because you kept saying, oh, it's nothing. But it actually, what it has done, it's manifested itself in my kid. I have a 33 year old and a 19 year old. That 19 year old is trying to stay home with her mom this semester because of these brain tremors, because. So I wasn't worried and going through things. My son is off living. They had two different mothers because I wasn't. I was a workaholic with him, with my daughter. She doesn't even remember me working outside the home. So, you know, I never had time to really think. I just know that when I got a diagnosis, it felt like a dam broke. Like I could finally just exhale and figure out, okay, I got a diagnosis. What do I need to do now? And that's. And people will say, well, do you think it was because of you being a black woman? I had black people telling black doctors, telling me this. It's not a white doctor, black patient. It's a health system and how they're trained. You have doctors that are trained to write in the chart. I've written a book. In one of the chapters of my book, there something. I'm considered non compliance and combative because I don't take the medicine. If you give me medicine for a month and it doesn't work, I'm not going to take it like. But they'll put it in your chart. Patient is non compliant, such and such. But why do you use those words for another doctor to come behind you and them say, oh, well, yeah, they told me you were non compliant. It's not. It's a whole system of people that are being trained, black and white and indian to women are emotional or she's irrational. She was hormonal. I think she was having. She may have been pmsing. Like, I don't even have periods. What are you talking about? Like, what are we talking about, sir? You know, like, my daughter's chart. I read the notes. I'm their patient. I go in my chart. I read the notes that the doctor wrote. I read all the notes because I want to see what y'all said. Patient is hyper vigilant because I asked you to run all these tests for my kid. Her mom is hyper vigilant. Such and such and such. Okay, I'll be that. So, yeah, it's. It was nothing. It was just a relief. It was a relief. And I don't remember ever feeling it, going through it. I never felt defeated. It's just like, I'm gonna figure this out, but what I won't do is I'm not gonna keep coming to the same doctor. Now, that's what I never have done. I'm not gonna keep going to the same doctor year after year and figuring things out, and we. Nothing. Oh, well, let's write you a script for this that doesn't work. Like, I had a doctor after I got my first colon resection. When you get your culinary section, you can't use. You can't eat and go to the bathroom. Like, right? You usually have really bad diarrhea or whatever. And so he gave me some medicine that's used as a psych drug, but it acts as. It keeps you from having spasms, and it does the same thing with your head. But what it was doing when I was driving down the street, it would make me jump. And then it had me dreaming about, this is. I'm aging myself. You all don't remember this? Have you ever heard of Land of the cross? Yeah, I've heard of it. This a tv show called Land of the Lost where they had dinosaurs and stuff walking amongst humans. I was dreaming about that kind of stuff where people. And he was like, but did the medicine work? I said, this stuff is making me crazy. You can't expect me to trade my sanity for going to the bathroom, sir. You can't. So it's a whole system. I know you probably. If you all have been dealing with health, I know you've had to hear some crazy stories. Cause it's some crazy stories. Like the. You want me to be crazy? He was like, but the medicine works. I said, the medicine is making me where I can't even drive down the street without thinking that something is jumping out the no.

[51:55] TWAINA WILLIAMS: Right.

[51:56] DIONNE STALLING: So. And that's why I said when you.

[51:58] TWAINA WILLIAMS: Were talking about, you know, for sharing that.

[52:00] DIONNE STALLING: I appreciate it. We're gonna wrap up now, so we're just gonna do 10 seconds of silence, and then I'll stop the recording. Okay? It.