Episode 53: Building Your Grace Muscle

Guest: Latasha Doyle

Lauren: Thank you for joining me today, Latasha.

Latasha: No problem. I'm excited to be here.

Lauren: Me too. And we're both drinking tea. I'm drinking Jasmine tea and your drinking…

Latasha: Mint, mint medley.

Lauren: That'd be a fun thing to just start saying what kind of tea or coffee or whatever you're drinking at the beginning.

Latasha: There some very, some very interesting teas out there too.

Lauren: So yes, there are. Well, I'd love to hear, I know your health journey in part, but I'd love to hear your summary in your words of what you're life with your body has been like.

Latasha: Yeah, so I have Marfan syndrome. It's essentially a connective tissue disorder, which if you know anything about connective tissue, it's head to toe. But I was diagnosed when I was two, so this is, I'm 31 now, so it's been a very long time since I've had this. We found out because my grandma actually died from an aortic dissection. So prior to that, my family did not know that they had it. And when she passed she was only 42 and we did an autopsy obviously because it's unusual. And they came back and they're like, “Hey so you guys are going to need to get tested” because this is a problem that affected her. So we found out that my mom had it, my aunt had it, her son had it. I have it. My sister Jerrica has it, which we didn't know then, because she is seven years younger than me. So, it's a family legacy. So now that we know the symptoms of it, now that we know what it looks like now, I know how it affects your overall health. We think it probably started with my great grandma because she died at 56 of what they thought was a heart attack, but they didn't know.

So that's sort of how we knew. Obviously my mom was like 19 at the time. So it's a little bit of a world shift for her and everybody. But since then, kind of being monitored from a professional healthcare standpoint, which is different from what anybody else in the family had. But overall, the main risk is the aorta dilates. That's the main connective tissue in your body is your cardiovascular system. So obviously that's the biggest risk, but, um, I have, I'm blind out of my right eye. That's connective tissue. So crappy lungs, crappy stomach, crappy ligaments, tendons, muscle, all that. So it's a systemic problem. But the main risk is the heart, and that's the one that they monitor the most close.

Lauren: Yes. And you, you mentioned, so, okay, so let me get this straight. So your great grandmother, your grandmother, your mother and your sister, those are the folks.

Latasha: There's, um, my mom's aunts and uncles also have it, too. Cousins do too.

Lauren: Wow. So in many ways, you get each other in a way that probably most family members wouldn't in terms of chronic illness.

Latasha: In a way. But that's also very unique with Marfan because it manifests so different in different people. So the traditional Marfan manifestation is, um, they call it Marfanoid, which is super great, but super tall, super thin, um, crowded pallet. So your teeth are a little bit crooked and protruding eyes that are, you know, because we all have really thick glasses, stuff like that. And then scoliosis as well. So, um, we have a couple of family members that look textbook Marfan and then there's somebody like my sister who you would probably never know has it if she didn't tell you. So. But yeah, it's, it manifests so different and it affects us in different ways. I have really severe pulmonary issues, my asthma and my allergies or stuff like that, whereas somebody else may have more severe heart problems, vice versa. So it's just a, we all get it, but we all have like, well, you don't really get it.

Lauren: Yeah.

Latasha: Those little moments of like, you don't know how hard it is for me.

Lauren: Right. And you mentioned that you kind of have the folks in your family, you're quite monitored medically.

Latasha: Yes. After, after my grandma passed, it's a yearly thing. So I have had an echo since I think I was like four for five. An echo is an echocardiogram, which is like an ultrasound of your heart and uh, the arches of the aorta ascending and descending. So yeah, super uncomfortable procedure, but it's not painful. It's just as a woman, that's not fun.

Lauren: So yeah, it's intense. Uh, it's, it's intimate. I think that's the thing.

Latasha: Oh, you're six inches away from somebody's face as they stare at a computer screen.

Lauren: Yeah.

Latasha: There's jelly.

Lauren: Yeah. I did have a few during the beginning of my ms journey and it was scary and very, it just felt so like, I was really glad I had invited a friend to come with me so I didn’t feel so alone.

Latasha: Oh yeah. Nobody's allowed to come in with me. Yeah. It's a hard no, and that's what I have also… I've done it my whole life, so I know kind of what they're doing and I'm very comfortable asking questions and they're very uncomfortable with me asking questions. It's a process and you're used to that and everybody, every tech is different too. So some of them are like, I can't tell you that. And some of them were like, you know what you're doing.

Lauren: Yeah.

Latasha: But the one thing I will say is that, um, they tried to bring in a lot of student doctors into any sort of care appointment that I'm in. Um, especially when I was younger because Marfan was still so rare then. Um, they, when I was probably eight, nine, 10, they said it's one in 10,000 people are affected and today we're learning that it's one in 3,500. So back then they really needed to study every person that came through with this condition and are they still try to do it. They tried to attend an echo, which as you know, is down open to the front and as a woman. Yeah. Some stuff is hanging out.

Lauren: Oh yeah.

Latasha: So it's really just how they do things and you know, just really uncomfortable. So it took me until I was probably 21 or 22. Um, as an adult, yeah. My mom was a nurse so she was always like, yeah, if there was ever a situation like that she would rather than the student nurses and doctors learn as much as they can. But as I got older it was more uncomfortable because obviously I had a growing chest and then by the time I think I was like 21 or 22 every time I make those appointments I tell them do not plan on having students in there.

Lauren: Good for you. Yeah.

Latasha: It's just one of those like few dehumanizing things I think in the medical system is like let's come poke and prod and assess this person. Treat them like a textbook.

Lauren: Yeah, and to know that you have that option. Especially, I mean I hear that your mom is a supportive person of the medical field, but also, you know, we learned from our parents. So if your mom is really supportive of it, it was probably like, it probably took some real inner work to realize, Oh wait, I can make a very specific boundary around this.

Latasha: Yeah. And it's like every year it's, it's not like an appointment. I look forward to. This is going to be great. So that was the one thing where I was like, Hey, that is the one thing that I can change. I can't change the rest of it. It's just the way it is. And that's the one thing that leaves me feeling the most upset after that. So I don't think a lot of people realize they can say no in the healthcare setting and you totally can.

Lauren: Absolutely. And also that reminds me like you said, just that it has an impact. And so I'm curious what some of your self care practices are before and after when you do that procedure. Like do you take yourself out for ice cream after or do you like watch a movie?

Latasha: I drink.

Lauren: That's your self care process.

Latasha: I have, we have a really tight knit couple of friends here and they know my process. It's like, okay, I'm going to go into it like a little pissy for a couple of days before this because sometimes it's bad news. Sometimes I hear like, “Hey, your aorta grew and you know, we need to talk options” and that's like my least favorite conversation. So I'm just, I can't, I gotta psych myself up for that and then I come out of it and I'm like, “I don't care what the results are, I'm getting plowed.” You know? That's, that's how I cope. Yeah.

Lauren: I will say as like a friend, you have such a specific, like you have the most forethought for somebody with alcohol ever. I feel like this is the dates that I will drink this beverage and this is the time that I'll be ending my evening. Like plan it out.

Latasha: Well even the other day when I texted you, I said I was drinking and I didn't feel like I could text you back. Like, yeah, I'm very, I'm very conscious of that.

Lauren: And you're self aware and you are. I think the word conscious is the words that I would use.

Latasha: Yeah. Well, you know, that's just one of those things where, um, it's still a celebration for me too.

Lauren: Yeah.

Latasha: You know, it sounds good. It's like a celebration, a couple of beers with my friends, so yeah. But yeah, that's, it's definitely a, for my echo specifically, that's like becoming more of a, a ritual for me is like I spend two days like pissed off that I have to go and then I spend the morning like, “Oh, I don’t want to do this, but I'm going to get there.” And I'm just like, let's do it. Let's get it over with. And then I have like, you know, I have the release of, you know, whatever happens. I have no control over it now. And then it takes probably a week to get the results back and by the time the hangover sets in, I've forgotten about it. So it's fine.

Lauren: You have a whole process that you go and just like, you've got your whole, you've got your whole like checklist of things. So, and I love that. You're just so unapologetic. And this is part of an I, you know, we met through the podcast, but I just love how clear you are about what your needs are. It's really awesome to just know you.

Latasha: I think part of that comes from living this my whole life. So a lot of people that I've heard through the podcast and that have been through their own chronic illness journeys, they're still fairly new to this.

Lauren: Yeah.

Latasha: And it's still such a process. And when you've had a life that didn't include this before, you guys have, you know, you're going to have to figure it out still.

Lauren: Right.

Latasha: And I mean, this hasn't happened like since I've been an adult. So you know, it's not like I was a seven year old like, kid, let's do this. You know, as long as I've been in control of my healthcare journey, it's been me developing that and figuring out what I need. And every year it changes. Some years of like, Hey Tara, my best friend, I'm just like, Hey Tara, I'm going to need you to come with me. And then I chicken out the last second. I'm like, no, never mind. I don't need you. But you know, it's just so she could be there.

Lauren: Yeah. Yeah.

Latasha: And it's just one of those like I've been doing this for so long that it's okay for me to do that because I know how this goes. This is not my first rodeo. Whereas somebody who's just going through it is they have no clue.

Lauren: For sure.

Latasha: That's okay. That's perfectly fine.

Lauren: I want to support the whole concept. I kind of like that you can call your friend and say, come, no, don't come. Because even that is part of self care is being able to say what you want and then having that change.

Latasha: Yeah.

Lauren: Cause you're human.

Latasha: Yeah. And just having a group of friends that get that and they're not like, Oh my gosh, she needs to make up her damn mind. It's more like whatever you need in this moment, we'll do it.

Lauren: Yeah.

Latasha: Just tell us like we don't care if it changes in the last second. So that's been probably a huge part of it too, is just having people that I'm like, Hey, I don't know what I need right now but I’m gonna keep you posted.

Lauren: Totally. So yeah. And your life is fairly impacted, like on a daily basis?

Latasha: Yes.

Lauren: The decisions I've seen made by what you can and can't do. And what's that like for you?

Latasha: Um, most things it's just normal. And then some days I'm just like, this is bullshit. So just a brief rundown of how that affects me. I, I wasn't ever allowed to do PE in school.

Lauren: Right. So physical education. Yeah.

Latasha: Yeah. That sucks. Like I can't do anything. And back then they didn't have programs like they do know. So I had to sit there and take notes during PE about what other kids were doing. Um, you know, that really sucked. And then I actually was a nanny for a decade and I had to quit doing that because I couldn't even go up the stairs anymore with the kiddos. So that was rough. But by that point I had already fallen into my new career, which is writing. I found out that like, Oh Hey, people pay you to write. So when it got to the point where I couldn't work as a nanny anymore, I, you know, I talked to my husband and we were just like, let's give this thing a go. Like worst case scenario, you have to get a desk job somewhere else and you know, but if you don't, you can stay home, you can take care of yourself. Like what a concept. So, and that was four years ago at the beginning of September, so just over four years. And we had to buy a new house cause we had a townhouse. But as you can imagine, doing stairs with our condition that you're already not, you know, supposed to do stairs. It was not fun. So we bought a new house. Everything is on the main floor. Um, which is a probably humbling experience as a, I think it was like 28 at the time to have to say like, we're going to have to move. I can't do this anymore. That was pretty rough, but also now I don't have to do that. This is fantastic.

Lauren: Yeah.

Latasha: Yeah. And um, I have a weight limit of 10 pounds, which is comical cause my dog weighs more than 10 pounds. Like I have to lift him into bed. I tried to not go over 25. Yeah. Um, you know, and my husband is very conscious more so than I am of my limits. And so he's like, what are you doing? Like, Oh yeah, sorry, I'm not supposed to do that. Like we live in Colorado, so you'd think like, Oh, skiing, hiking. And I don't do that. My friends do. It's great to like see their pictures and I'm just like, it's one of those things that I could be better about, but it's just, that's my reality and that's okay. But I've had my whole life to get used to that concept. So there are definitely days where I'm just like, this is shit.

Lauren: Oh yeah. It's so important to be able to do that. Truly. Like to be able to say, this sucks or this is not fair. It really is something depending, like you just said, depending on the day, some days you're like, nah, okay. This time of the day. And I think that that's one of those things that the swing back and forth can be so exhausting. It's just like, okay, I'm going to be okay. Like I can, I can accept my limits and I can accept that the system will like a good life.

Latasha: And then you wake up one day and you're just like, my back hurts and I'm pissed off. Yeah. It's just not fair. Sunday is, and then, you know, you get through it and then it's like, okay, I'm okay. And then a week later it's something else.

Lauren: Yeah. And I, I think that diversity of emotional experiences is so human and it's not, it doesn't fit with our kind of human tendency towards labeling ourselves and other people like, well, this person is a positive person and this person is a negative for that. You know? We're much more multifaceted than that. But I think sometimes people can be afraid, including me, afraid to share too much of the negative because it's like, Oh, well, but then what if I'm viewed as someone who just doesn't like life, are not appreciative, and that's not how it works.

Latasha: I also think it's hard because when you only, not saying you do, but when you only focus on the positive, like I'm a fairly positive person when it comes to my condition. But on a bad day, I'm limited on who I can share that with because people will think the sky is falling. If I'm like I'm having a bad day, they're like, Holy shit, she's dying. They just can't really encompass that dichotomy, you know? It can fluctuate in a day. I can't show it properly in those harder days. It's hard to be there to take care of somebody else's anxiety and worry.

Lauren: So I think important. It's like know your audience, right? You want to know, like I really do believe we have different friends and family members and loved ones who excel in different things and sort of they're like little experts or consultants that I go to for different things. So important to have friends who also get that you can have a really crummy day and still have a great day, another you know, in the same week or have a really weak month year and know that you're allowed to do that. And I thought also like you said, not bearing the anxiety of other people. That's a big thing.

Latasha: Yeah, that's really hard to be like, Hey, I'm having a moment here. I need you to not have a moment with me. I'm not available for your moment. That's a really, really hard thing. And I think that that's what's so frustrating when people in this community try to talk about it and then they instantly get this like, Oh my God, are you okay? It's like I just tried to share it. Like I'm just sharing this. I'm not asking for pity. I'm not asking for you to like swoop down and save the day. I'm just like you said, the sky is blue. And I said my back hurts. Like those are facts.

Lauren: Yup.

Latasha: That's a really, it can be really hard at first because I'm like, even with new friends, I've gotten to the point where I just tell people straight out, I have this condition. Like if I pull out my inhaler when we're out at the restaurant and just look away, don't worry about it. And sometimes that puts people off and sometimes they're just like, yeah, you do. And that is my like very blunt way of weeding out who can handle it. Who can. Yeah. But that has obviously its own consequences and there's still, you know that really hard. You want to have people in your life that can be there for all those different facets. Like, I'm having a good day, let's go to the movies. You don't want to have to worry about them, you know, like, Oh, are you okay? Can you do these stairs? Can you do this? Is that okay? So, finding balance.

Lauren: So it's a very much about communication too. But then there's the piece that isn't it, it's not about direct communication. Some of it is nonverbal kind of energetically shift away. And that's, you know, everybody has the right to move towards what they want and away from what they want and it's information.

Lataha: Oh absolutely. And that's never insulting to me when somebody does that. It's like I actually respect that you pulled back because I'm not here to just play around. Like I'm here to find people who can handle all of this.

Lauren: Yeah.

Latasha: And you know who I can really resonate with and take care of too, versus somebody who's like, that's not, that's not what I'm here for. And that's okay. You know, you, yeah, we don't, we don't have to be best friends. That's fine.

Lauren: And you have some really cool solid friends in your life and I like that.

Latasha: I do. Yeah. You know, you should have them on a podcast.

Lauren: I know we talked about that cause we're gonna meet up in a few weeks to do, we're going to do an interview. I'm going to interview you again, but next time is going to be with your husband. I know she's so excited, excited about and you are joking like you can also interview my friends about the impact my health challenges have had on them.

Latasha: Uh, it'll be so funny too because we'll be traveling and that's usually when this dynamic comes out the most. You know, like everybody, there was one trip we took to Austin and I get really overheated very quickly if I'm walking in the heat and I wasn't even saying anything cause I usually just like keep to myself like I'm going to make it, I'll be fine. I'm just dying a little bit. Nobody cares. And my, my friend Ryan turns around and he's like, we need to get her to a bar now. I was like, Oh my God, I must look like death warmed over. And we get in there and he was just like immediately to the bar just like handing me beer. Please drink this.

Lauren: Does that help you?

Latasha: Oh yeah. It, you know, he doesn't have to say anything. It's just like they just take care of it and they know exactly what I need cause we've been friends for 15 years and then you know, that same trip I get stress fractures in my feet if I walk too much because my bones are not built the way other people's are. And I got piggyback to the hotel. But it's just like one of those moments where it's like somebody could really find this mortifying. Like I can't believe I have to rely on my friends to take care of me like this versus me who's like I didn't even ask for this and I'm so blessed and it's so powerful to just be like being piggybacked cause your foot's broken and nobody, nobody like makes a big deal out of it at all except for me where I'm just like trying to run away from them. You know, and they just do it.

Lauren: There is, there's this, this intimacy to your story and like to thinking about that scene. Cause what comes up in me is like joy.

Latasha: Yeah, absolutely.

Lauren: That you guys are all kind of co-creating this vibe together. W're going to handle it. We're going to do it as a team and it's a little bit funny. It is.

Latasha: And that's the best part is that they can laugh about it. You know, like they'll make jokes about, Hey Tasha, want to do the stairs with me? Like they all know my limits. They don't treat me like I'm any different than they are. And it's just this very like, trusting environment. Like I don't have to worry about being like, Hey guys, I'm done. And have people judge me for that. They're just like, cool, okay, we're good. Or you know, Hey, we'll take you back to the hotel and we'll go do something else. And nobody is offended.

Lauren: I get this sense... what's the word? Very buoyant. It's like your friend group. I get this sense that anybody could be going through what you're going through and everyone would circle up to kind of, Oh, okay, let's figure this thing out. And somebody may break some bone in the future or have some kind of illness. And you guys are kind of well-practiced on how you come together.

Latasha: Yeah. And okay. It's just, it's fun to grow old with them and see them getting old pains too. Like my friend Ryan blew out his knee and he's like, Oh, I can tell it's going to rain today. And I'm like, this is so great.

Lauren: But you're, you're, um, one of your favorite topics is talking about like being out with your condition and sort of like there's an illness closet and coming out of it.

Latasha: Yeah.

Lauren: And just being public with what your health journey.

Latasha: I think part of that, um, is most people in my family are not out about it, especially at work and things like that where they think, Oh, nobody needs to know I'm struggling with this. Um, my mom and my sister both work in healthcare, and they don't want people to judge them or I dunno, look down on them maybe. So part of that is me retaliating against that part. So say like, you know what, Hey, I've had a really great life that I've told people from day one what's going on in my body, in my life. But also everybody is different. And if we don't talk about that, nobody's going to know. So I have a lazy eye and to me this is one of the best things about my condition is that I at least have something that shows people, okay, I'm not exactly like you. And so yeah, you bet you're ass I’m going to bring it up, versus somebody who maybe has a very invisible illness and nobody knows until you have symptoms and they think, Oh, you're sick. Oh, you're lazy. Oh you have this, you need to just push through it or you're just having a bad day. And that to me is one of the most internalizing things about having an illness cause you, you hear how people are like, Oh, you're too young for that. One of my favorite things to do is to be like, actually, honey, no I’m not. And I will tell you exactly what's going on in my body just because people need to know that. If they say things like that and I wasn't out about this, I would internalize that and think, yeah you're right. I'm just, I'm too young, I'm too lazy. That's my problem. It's not the way that I was literally made.

Lauren: Well and like you said so, and the whole concept of being out in the closet is socially created. Cause I really, I mean cause the original way of using the term coming out is around being LGBT and yes, the idea for me has always been, well you know I didn't go into a closet. It was created around me, you know? And so when we talk about coming out for so long, it's been viewed as well the individual is coming out of their own closet. But it's like no way. It's coming out of the assumption that I don't really, I that I'm not who you think I am. And it's your assumption that I'm breaking by coming out. Whether it is like for me as queer or bisexual having an illness that's invisible or having an illness that somebody just doesn't understand the severity but being open and saying, yeah, the, the evidence that I'm not too old for this is that I have this condition. And actually even though we have this cultural understanding of illness only showing up when we get older or you know, physical limitation, that couldn't be less true. And there's something very soothing to folks who also get it from the inside. Yeah. When it becomes normalized that it is, you're not too old for this. You're your age and you're going through what you're going through and there's nothing wrong with you as a person. And I think that's what you, when you said internalizing it, you're like, man, if I didn't come out about this to you, to your face right now, I might internalize some of those statements that you're making, but I need to do it for me.

Latasha: Well, and I, you know, when I was younger you would always hear stuff. I had really severe asthma and they were like, Oh, she just needs to get outside more. And it's like, actually that's the worst thing for my body. But if I didn't know that I would have done that and I would have pushed myself too far.

Lauren: Totally.

Latasha: And that kind of stuff pisses me off because there are people who have, you know, severe, you know, like fibromyalgia or POTS or something like this where it's like if somebody told you you're just lazy and you try to push through that, you could hurt yourself so bad. It's so damaging. You also get the mental side of it. You know, you're already dealing with something, you're dealing with it somewhat alone. Even if you have a ton of people around you, it's still, you know, you at the end of the day. So we need to be on our own side by being out and being clear with others and obviously.

Lauren: My multiple sclerosis comes up all the time. It's hard to hide that on my chronic illness. I know I add this a lot in the conversations that you don't have to be out. And what I mean by that is it's not more or less virtuous or whatever. Like you're not bad if, if you aren't open, because the truth is it's never the individual that made the condition so challenging for a culture. I mean, the, let me say this again. It's never the individual. It's the culture that is unaccepting. So the, even any anxiety, any ounce of anxiety, and this is what I really want to say this, this is an important moment that any ounce of anxiety that any of us feel, and I still feel it, and I know so many people listening too. Any ounce of that anxiety is not yours. It is not. Because if something in you that is weak or that is not brave enough, it's because you're situated in a culture that tells a regular story that it's a problem and that maybe that you're a problem or that there's something wrong with you. And so yeah, of course we're going to get nervous about what people are gonna think and what stigmas and, and labels are going to be put on us. But that's not the, that is not an individual issue.

Latasha: That's right. Know, I think my biggest recommendation there is even if you don't want to have that conversation, like I will have that conversation with strangers. Yeah, no problem. But there are people in my life and in my family who don't, and my biggest recommendation to that is as long as you're having that conversation with yourself where either you like put on that imaginary conversation where you're just like, Oh, I should have said this. You can have that hypothetical conversation. And as long as you're saying that's not true, and I know that person is just coming from like a societal misunderstanding... That can hopefully negate some of that internalization.

Lauren: I love that. It's not, it's not you, it's a great self care practice, whether it's journaling or talking to a friend and debriefing about it or having the imaginary conversation in your mind. But it's like, um, there's this film called the color of fear. It's a, it's about race and racism and it's a group of people will group of men that are from various races and they're talking in one of the men says at one point in the film, you know, I have internalized racism. And what he means is he has this sense of what race means and how we're supposed to treat each other. And that there's this internal hierarchy that was taught to him based on what he learned growing up and living in the culture. But that it is, um, you know, it's oppressive in nature, but he refers to it as like a cassette tape that plays in his mind continually cause it's learned. But he said, you don't really necessarily get rid of that tape cause it's still something that gets taught to you, but that you can play another tape at the same time, another tape of liberation that that tells you your actual truth and the truth about, you know, the fact that that's no, you know, that's not okay and that's oppressive. And here's what is true: everyone is worthy. Here's what is true is that everyone is deserving of respect and that I have internalize privilege that's on my other cause, that tape, but that I also need to remind myself that it's not earned and that I'm supposed to use it for good and, and all of that. So that's my little reference that I'm going to kind of transpose and say that we do. I think we all have our own internal cassette tapes that might be unique to us, but that are probably from whatever we learned growing up that are playing about what illness means or what, what any kind of injury or health challenge means. And it's hard. There's a lot of shame that can go along with that for sure and a lot of self doubt.

Latasha: But what you're talking about is building that second cassette tape that's playing that says, Nope, that lady on the bus was wrong. I don't agree with the word that she said and here's what I actually feel. And I feel like that eliminates also that sort of emotional reaction to anger. You feel like when you go home you're like I can’t believe person fricking said that. If you have that conversation just like play it through hypothetically or have it out like, you know, I'll talk to my husband or I'll talk to Tara and just be like, you know, this is what happened and this is how I feel, but I feel better.

Lauren: Vocalizing those things to make sure that you understand your own reality is so powerful. Whether you say it out loud or it's just in your head, which is so true. I love that you are calling us to do this because now I feel like I have a really clear exercise that I want to try on and it's including not even just conversations with people but, but if I see something on TV or if I hear somebody make a comment like somewhere else in the world, in a public setting, that I can still do that in my mind. Say, here's how I would respond if I was on that TV show or you know, and kind of make it your own thing.

Latasha: Say something. If you see something, say something exactly like they say in the airport.

Lauren: Yeah. So, so can we talk a little bit about being an entrepreneur and owning your own business when you are living?

Latasha: Absolutely. Yes. A

Lauren: And just to speak to the overlap here, your, your business is benefiting the This is Not What I Ordered podcast because you write the show notes every week for our guests interviews also transcribe each episode so that it is more accessible so people can read it instead of just listening or both read and listen at the same time.

Latasha: Yes. That is all true. Yeah, I love it. It's between me and my VA. my VA is virtual assistant. Um, she also listens to the podcast and she's always like, when is there going to be a new episode? And she's so excited.

Lauren: That's so cool.

Latasha: Yeah, the podcast is great. Yeah. I'm thankful that you created this cause it's just one of the few things that has ever been created that makes me feel like Holy shit, people are talking about this. It's just so exciting and there's so many different viewpoints. Some experiences. I'm so much, so many powerful insights to take away from everybody. It's just, it's phenomenal.

Lauren: Thank you. Thanks for uh, thanks for listening all the time and being what I call a… before you became the show notes writer, you were just what I call the super listener, which you still are, which is like somebody who listens and sometimes will send an email or comment on social media and say, Oh, this is why I like this episode. So I could tell you were really into it. And then when we finally aligned like, Oh, I think you know what, now I'm remembering, we were just talking and saying, how can we collaborate in some way? Like I want you to be a part of this. And this was what we came up with.

Latasha: Yeah. Well it was many, many moons ago.

Lauren: How long have you had your business?

Latasha: Great question. I think the real story is I started at about four years ago. It's been about three years since I called myself a business owner. It’s just because I went through that whole shift with like I was a nanny and then I couldn't be a nanny. So it was like, well, I'm just writing on the side until I figure something else out. And then, um, I surpassed any level of income I ever made as a nanny. And I was like, Oh, well, well, turns out I have a business. Yes. My husband was just like, duh. Latasha.

Lauren: I like how your husband so far in the story has been this truth teller who kind of bears witness to your life. Gosh. Just going to reflect back to you some things that are going on.

Latasha: Shane is like the ultimate, uh, logical and practical individuals, which is hilarious. Paired up with me who's like this anxious, loud, solid energy.

Lauren: You guys are quite the duo.

Latasha: You will find out just a couple of weeks.

Lauren: Yeah. I can't wait.

Latasha: But yeah, so I started my business, wow. About four years ago. It's been four years of me figuring out what it means to be a business owner while also recognizing that like I have limitations. I still have to take care of myself on a very deliberate level every day. Like I can't not eat, which I have done cause I've had quote unquote too much work to do. Oh I feel like we've all been there. I feel like we've all put um, external circumstances above our bodies and then we pay for it pretty severely. Um, and to be clear, I am 31 and I have had this condition my whole life and I still do this. And I don't know that it will ever be fully figured out cause everyday changes. Some days I wake up and I'm in pain and you know what, I'm not going to be able to work today that it's not a good feeling. Okay. It's been a learning process to work through the entrepreneur side of things while balancing quote unquote the health side of things.

Lauren: Mmm. Because yeah, there is that having a, having a business and having chronic illness is sort of, it's a double edged sword because in some ways I love that I get to create a schedule that works for me. I get to manage my workflow, I get to take days and not have to tell somebody that I'm calling out sick necessarily. I mean that's different when it comes to mind psychotherapy clients because I, I work with a lot of people with chronic illness. So, you know, yeah, it's actually very accessible for both me and my clients because most of the work I do is online over video. But, um, the double edged sword is like managing energy levels and managing the, the ebb and flow. And you and I have actually bounced some ideas back about this, which is like, well, you know, how much of a schedule should I create for myself? How much should be free flow? And I'd love to hear how you, cause I know productivity is something that you love chatting about. And I'd love to hear like how do you productivity and how it relates to chronic illness. Like how do you manage all of that?

Latasha: So let me preface all of this by saying I am a type one Enneagram, which is the perfectionist.

Lauren: Oh my gosh, I did not know that. I’m a one too.

Latasha: Really??

Lauren: Yeah. Gosh, I forget what my wing is, but I'm an Enneagram one. Yeah.

Latasha: And I think in traditional text it's called a reformer, but most like interpretations called the perfectionist. To me, productivity is empowering because to me productivity means the systems that allow you to be productive, not just how much you do in a day. Although it does mean that, like for me, I feel most epically satisfied with myself when I have checked everything off my to do list. I'm like look at me go. And then the next day I wake up and I'm just like, guess what’s not getting done today? Half the shit. So I say all of this knowing that this is ingrained in my personality type, but I do really believe that this is a way for me to build a structure that I need to take care of myself and to do what I love doing, which is working with my clients and writing and never feel like I'm sacrificing one or the other.

Lauren: Mmm.

Latasha: There are days where it feels like I'm absolutely sacrificing. One or the other and I'm getting better at being okay with that. But I would say the majority of the time I have the system that works very well, but it's taken me a very long time to figure that system out. Well it was very different and now like writing alone in my house eight hours a day, it's very different. So it just depends on your own reality.

Lauren: In the chronic illness community, I think the concept of productivity is it can be really potent as a discussion topic because a lot of the work that I've done on an emotional level has been around becoming more at peace with when I'm not quote unquote productive because sometimes I think get caught up in the story that my worth is determined by my productivity. But then there's this other piece that you're mentioning which I think is so liberating, which is the idea that productivity isn't just about output, it's about systems that allow you to be in your creation. And so can you talk a little bit about what the journey has been like? Cause you said it's taken a while, but your systems work for you. Like how did you get there and what are your systems if you want to share them with us.

Latasha: Hi, my name is Latasha. Of course I want to talk about systems. So when I first started, I mean I very few clients period. I was taking care of myself and felt like everything is gonna be great. And then I hit a point where trying to build my business, I just disregarded by health entirely. And then I have one of those pesky annual echos and my aorta grew so it grows by millimeters. Then it has a certain point and that's when they want to talk surgery. And anyway, I had my measurements for the doctor was like, Hey, we're going to need to talk options. And it was just like this punch to the gut. It was like none of this matters. None of what I'm doing on a daily basis matters compared to what I'm doing to my body. Like what, how I can take care of my body. And to be quite honest, I can't fix what’s been done. Yes, but I can still mitigate some of the effects of my condition by not being so busy. Yeah. So then after that point I really took a step back to look at my business to see what was really screwing me up with my schedule. Cause clients will throw stuff at me at the last second and I have to pick it up or I feel like I have to pick it up so I had to take a hard look at that. I had to look at my rates, I had to look at, you know what I was scheduling in. I'm a schedule person. I know this is still feeding into right neuroses to be quite honest, setting myself up for success there because I need to schedule a time for yoga. I need to schedule fun time for me to do things that are not in my house. My husband and I share one car, which means I am in my house Monday through Friday and that means I have a really hard time separating work from home. Like my kitchen is literally right outside this door. So it's hard for me when I have a down moment at home to be like, Oh, I'm just gonna go write up something real quick and then I'm here for three more hours. So I took a lot of time for me to figure that out and create a calendar that I share now with Shane so that I can say, I'm doing this. I said I was doing this. This is the only instance where I need to be held accountable: in my own self care. Somebody help me.

Lauren: It's so important and it enables us to be on the ball. Yeah. When we're really taking care of ourselves, we can get a lot more done. I think the story that comes up with this story is like, no, you can't do not eat. You have to do the work. And it's like if your car runs out of fuel, it's going to go anywhere. Even though it takes a while to go to the gas station.

Latasha: And I feel like you have to hit that so many times before that message. You know, it really drives it home, at least I do. Um, even yesterday I, my mom was getting her bachelor's of science and nursing and it was 4:30 and I stood up and I realized I hadn't eaten when I was like, Oh Latasha. So that was one of those moments where it was just like, Oh, I, I didn't do what I said I was going to do and that's take my lunch break and I'm really hard on myself just by nature. So I have had to learn, OK, this is going to be a flux in the flow. Okay. Yeah. Within the system that you've created. It's like you're not gonna hit a perfect check mark every damn day. And that's probably been the biggest growth within this whole process is giving myself the grace to not have a gold star day.

Lauren: I mean, I am a gold star gal, so...

Latasha: That's going to be the name of the episode.

Lauren: Well, I love the permission to not know. I don't think people would understand it anyway, but you know, have the permission to even know that you're a gold star gal.

Latasha: Yeah.

Lauren: To feel like your day has to be that type of gold star. I want to say it's a different type of gold star, so you still get a gold star in my book. So still a star system. You still win because it's not. I'm kind of resonating with the whole Enneagram one is that, and by the way, we'll put it in the show notes, Latasha, we'll put in the show now that there's this test you can take about, there's nine types. And so that’s a reality for me that I need to be regularly giving myself affirmation. That kind of deals with the, the cassette tape of the Enneagram one, which says you have to be productive, you have to be good. You have to do it this specific way and you can't just do it. You have to do it well. So there's that cassette tape. But then I also need to be developing this other one that says you can rest. You don't have to finish it all. The world will keep spinning if you don't do it perfectly, you know, all of that, any of that one a lot louder. Uh, that would be a cool, like maybe meditation that I can, that I can put [inaudible] well, and that's one of those things for me. Like I said, I use my calendar and I also use Asana, which if you are a client of mine listening to this, you know how I love Asana. It is my to do list.

Lauren: Asana is the name of a program. And you're not talking about a steam room.

Latasha: No, no, it's a-s-a-n-a. Thank you for fixing that. Yes. Also, people who are yogis are like, you do what? Asana is like a flow. Um, but yeah, so I use a tool called Asana for my projects, for my clients, all this stuff. And that really helps me get clear on my to dos. But then I use my calendar to deliberately schedule in that space and my husband sees it, so he's like, Hey, did you do that today? And I just stare at him and he's like, okay, there's only so much he can do here. But at least he tried. Right.

Lauren: That's really cute.

Latasha: But it's just having that time and I spend that time, honestly I have to set enough time aside for that tape to play out and like run out. Like I do 45 minute yoga sessions because it's the first 15 minutes is me being like you should not be on the mat or I know I should be in front of my computer doing that or I should be doing that or you should be doing that. And then by the time my body is like, Holy shit, we're so tired. That's when the voices stop and I'm finally able to drop out of that and realize like everything else is going to be okay cause I took this time for myself and my body obviously needed it. Yes. But if you don't give yourself… that was a big learning curve for me is setting aside enough time. Not just some time, but enough time. And for some people you may only need 15 minutes. You just go for a quick walk. Yup. My, uh, anxiety monkey brain takes a lot longer to shut up.

Lauren: So I believe at that time you are, you keep tuning in and adjusting and assessing and to what your needs are and recreating your, your schedule and your systems so that you, like you said, they are working better and better over time.

Latasha: And I've also surrounded myself with clients and people who reaffirmed that like… I am doing a good job, and that it’s not the end of the world. I'm just like, I'm late on this. And they're like, dude, it's okay. Like you'll be fine. Like they, they don't need it right away. So it's almost, they know that I need to validate like, Hey, I am behind on this and I'm going to get it to you. And they're like, okay. And then just having that connection with certain people, not all of my clients, but some of them that really helps me out. Um, and that's part of why I'm so out with my condition.

Lauren: That's great cause they know that I'm not choosing, I'm not choosing this like well and this is literally what happened today. So this goes along with being business owners that you can see curate the folks that you work with and yes. That is so important because you know, impacts your whole life.

Latasha: Yeah. It does. And I talked to my husband a lot about this because I've never worked in a traditional office. So um, if there's somebody out there who has, and there like, none of this really applies to my life. It's just choosing the people in your space to maybe have that conversation with at work. Oh that might be manager, it might be a coworker. It could be someone just one person to maybe make you feel like, you know, at least you have a little bit of backup.

Lauren: Yes. To have those people that you can speak your heart to.

Latasha: Yeah. And have a little connection there.

Lauren: Yeah. That's so true. Yeah.

Latasha: I have nothing but respect for people who go to an office with conditions that they feel like they can't take off or they can't really express what's happening. If y'all need somebody to vent to, my info will be on the show notes.

Lauren: Yes. I mean that is a very real issue for so many folks with chronic illness that I, that I know that I talked to and, and so that's something that I love that you're offering yourself as like a sounding board because you know, when you talk about being out, it's really powerful to have your own business and be out. And then there's all these other things that can systemically go against you in the workplace. Like just people treating you differently or you know, for some people they feel like their job's on the line if they folks out their disability. And so, uh, and that's like a whole other ballgame. I mean, it's also another ballgame to not have steady income. You know, it's like there's all these like pros and cons, not as uh, for sure when you have your own business that there's going to be a paycheck or I don't, I know it. But yeah, I think that having a chronic illness and doing any kind of work, it just complicates it in a way that I will say if we want to frame it into a positive thing, it requires us to have really good with ourselves and really good support systems.

Latasha: Absolutely. And I think that also is that grace component too. You develop such a strong grace muscle. It's crazy.

Lauren: I love that. I love that you call it that. So as you know, at the end we do three questions. I'm going to ask you them. So, um, okay. So the first one is what does it mean to you to live a fulfilling life and how has your health journey kind of contributed to that definition of fulfillment?

Latasha: Well to me, a fulfilling life means doing what you want to do with the time you've been given, even if you don't know what that time looks like or the quality of that time. So to me, you can do anything with any level of ability. Let me rephrase this. I think that no matter what your body is capable of doing, you can find ways to enjoy it. Yeah. So like my friends and I always joke that I'm going to get like an all-terrain wheelchair so I can finally go hiking with them like that.

Lauren: I like that.

Latasha: But it's like there are always things like that that are out there in the world that allow you to do what you want to do. Like I have built a business from my desk in my house around a limitation, like what normal people would consider a limitation. I'm like, I'm killing it. Like I'm okay. And that I think is just one of those things that I don't think people who are just diagnosed or who have only been diagnosed for a few years, they feel like the world's no longer open to me. Yeah. But it is and there's a richness of experience that some people are never going to tap into that we do.

Lauren: Yes. Amen. All right. I don't have anything to add to that. Gorgeous. So the second question is, do you have any funny stories from your…

Latasha: No, this has just been such a boring ride. Um, one of my favorite things about my body is that I have two different colored eyes, but one of them, like I said multiple times, one of them is slightly lazy and I love just stare people down when I know they're uncomfortable. Because it looks like I'm slightly looking over your shoulders at all times no matter what. So now in my business, I have these discovery calls with clients where I have to get on a video call and um, sometimes they've been referred. So I, I think they're somewhat warned like she has a lazy eye yeah, it's fine. But when it makes somebody really uncomfortable and they don't know what to say, I just stare at them and they just don't know what to do or say. And they do this thing where they literally look behind them like they're alone in their office and they think somebody is just standing right behind them. So there have been multiple times where I'm just like, did you know that there's a ghost over your shoulder? And they do not know what to do. That is one of my favorite things. Oh, I have plenty, plenty of other stories that I'm sure my friends will listen to this podcast and be like, why didn't you tell her about this other time?

Lauren: That's the thing is sometimes, you know, I think sometimes people at the end will say, Oh my gosh, I don't know if I have a funny story. And for me, I think part of it is remembering which funny story to tell in a given.

Latasha: Well, and I think for me the biggest part of this is having humor about it. Like I can make jokes about death, like nobody's business. And it makes people so uncomfortable, but it is one of my greatest joys in life. So yeah, that's great.

Lauren: It's like part of the meaning of life is joking about death. Well, and that's one of the topics that I know you love talking about. And I wonder if we can actually bring that into our next interview, which is between you and your husband.

Latasha: Oh, it'll come up, it'll definitely come up.

Lauren: The interview will be called Lauren is the third wheel and Latasha and Shane are going to talk about life and which I like because as a couples therapist my favorite moments are the ones where I wish I wasn't in the room cause they're connecting so that I'm just like maybe I could just fade into the distance and let them keep them. But that's kind of what I love about couples interviews is being able to, because I actually, how I do the interviews as I like ask you guys to face each other and talk to each other.

Latasha: I'm going to be a wreck.

Lauren: Yeah. Well we're all going to be here holding you and loving you and support. So you know I'm over here like too much and then my partner is going to be there too cause he does the video and the sound. And so it's really going to be quite a couples occasion. Um, yeah, a couples date. I'm really looking forward to it.

Latasha: We're just going to have wine and chitchat. I think it'll be really fun.

Lauren: So the final question is what do you have now that you might not have had without your health challenges?

Latasha: All of it. Like I really think so. Obviously this has been my whole life. Um, my, my world view, my whole life. But I think that without Marfan, I wouldn't have what I have now. I mean there's so much.

Lauren: You're having a moment of,

Latasha: No, I'm not.

Lauren: I'm going to call it a moment of connecting with your heart, but I dunno if that's what you would call it.

Latasha: Yeah. But yeah, I think that's just one of those like you can have really bad days. God, this sucks. I mean, you can think, wow. Like I'm really blessed. Everything in my life has been because of this. And that's a beautiful thing. Okay. Thanks Lauren.

Lauren: Wow. Okay. I'm having all the feelings right now. I just feel what you just said went straight into my heart. And my, it's almost as a little bit of silence and stillness to all of it. It's like that moment when you step back and you look at the whole thing.

Latasha: Yeah, absolutely.

Lauren: Wow. Absolute gratitude.

Latasha: Which I don't think people on the outside would understand without they think, God, what do you have to be grateful for you? You’ve got it rough. And I think I have beautiful marriage. I have all of these beautiful people in my life and I am truly myself because of this condition. There’s nothing that I would change. Except maybe being able to go upstairs. That would be nice.

Lauren: If the universe is taking requests, we will just take that one, some stairs. Well, thank you so much for sitting with me.

Latasha: Thanks for making me cry.

Lauren: Welcome.

Latasha: That's always what you're here for.

Lauren: So Latasha, finish the sentence. This is not what I ordered, but…

Latasha: I'll take it and I'll have the beer too.

Lauren: It's the most Latasha answer. That's great. Thank you.

Latasha: Yeah. Yeah. Thank you for having me.

Lauren: No, it's just, it really is so special to take that moment of, it's a little bit like I've never had a free, free fall from an airplane, not planning on it. Um, but it feels like for me, what I imagine is just being in this chaotic situation of being in an airplane and then jumping out and then everything changes for a moment or a long time. I imagine the sound changes. I imagine there's, even though you're falling, maybe a sense of stillness and awareness and that's what comes to my mind when those have those moments of like, wait a second, I can look at my life and see just how magical it is.

Latasha: Yeah. That's very powerful. Although if I was free falling from an airplane, it would just be panic.

Lauren: Yeah. I think that that's why keeping it as an imaginary, people are listening right now and they're like, I dove, I've dove dived from an airplane... help me. Professional writer Latasha help me!

Latasha: Dive.

Lauren: I've skydived from an airplane and Lauren does not have any clue what it is. Right. It is not like that, but in my mind that's what it's like.

Latasha: Yeah. My brother has skydived sky dove. Whatever. All he said was I had boogers everywhere.

Lauren: Oh good. Thank you for that. Really describes it. Yeah. So note to everybody. When you skydive, blow your nose first. See if that helps. Good luck.

Latasha: Especially if you are jumping tandem cause the poor guy is going to be super grossed out.

Lauren: Well, I don't know if this part is going to make the episode, but if it does, it's going to be funny. Maybe we'll put it after the final announcements or something. This was really fun. Yeah.