64. Rediscovering Movement: Living with Scleroderma / Rachel Lando
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Rachel Lando was diagnosed in 2012 with scleroderma, a rare autoimmune condition. Rachel embarked on a journey of rediscovering movement in her stiffening body. Today's episode we talk about living with a chronic illness, empowering others, staying inspired, resiliency and so much more. You are going to be fully inspired after listening to Rachel's incredible story and how she is lives her life. *Subscribe* to the podcast to get all the new episodes and sign up for our *newsletter* for updates/workshops/freebies: katiekaygraham.com/newsletter
"We are shaped by our obstacles; we are defined by how we move through them."
Katie Kay Graham
Sometimes when we tap into that and release the ego, we just show up in love and just have the conversation go and doesn't need to be any sort of expectations or perfect or you just be our silly fun selves. Like, that's all I want. That's cool. Okay, well, Rachel, I'm just like, so happy that you're here today, we might as well just dive in.
But yeah, I'm really, I'm really excited because when we connected, it was through a yoga class that was a donation base for scleroderma. And luckily it has, as the universe has it, we just ended up our mats right next to each other. And that was one of the most powerful classes, I just felt so inspired, like, you know, that energy where you're just like, oh my gosh, like, I just feel the love, like I just felt open and it and I felt like we just like our energy next to each other was just, we were just kind of smiling and laughing and having fun and but there's a deeper essence to it to that Rachel, you really inspire me is that dealing with this disease, and you just show up on your yoga mat, you're moving, you're here you're connecting, you're just like, so inspiring. And I got done with that yoga class, I went home, I was like, I told my husband, I was just like, I just feel so grateful. I'm just so grateful for
this community and really like my body, like, we don't realize that having a functioning body and just the ways that it can move and carry us through the day, it's just so easy to get caught up in the negativity of it. So the perspective that you provided me, Rachel of just really inspiring and being connected to my body and just keep going keep moving. You know, it's like all of those things kind of integrated in that moment. So that is how I want to lead into this conversation. Thank you for being here.
Rachel Lando
Oh, thank you for having me, that was such a lovely introduction. I definitely felt the same way that day. You know, I love I love the practice of yoga, I love moving however I can. But that was actually one of the one of the rude awakenings that I had after I got sick is a I had not previously been grateful for my wellness. I took it for granted. And, and be it actually opened up a world to me, of people who are struggling tremendously to. And when I say self care, I mean, I'm talking about people who can't brush their teeth, who can't wash their hair. And so it opened up a new lens for me, if I which, when I evaluate my own situation, my situation rocks, like my situation is pretty good. So it definitely inspired a lot of gratitude and me. And if, if that's what I'm passing forward, I feel pretty good about that. Yeah. But definitely, definitely living with this disease has taught me a tremendous amount of new lessons that I actually am pretty grateful for, although in the community, you know, that's sort of a funky thing to say, because you'll meet people who say, Well, I'm not grateful for this. I had a good life, and now I don't. And so I recognize that. Gratitude is is definitely relative when you're living with a chronic illness. Especially when there's a lot of pain. When there's a lot of pain. It's incredibly hard for anybody, I think to be grateful for Yeah, so that's, yeah, I feel very lucky. But scleroderma is definitely a big issue. For me. I was the support group leader for a number of years. I recently stepped down as the fourth group leader after the last walk, which I had organized. I stepped down because I had started this yoga company last year that brings free classes to people with chronic illnesses. There's a very large over level. First of all, the percentage of disabled Americans is 26%. So almost one in four Americans, more than one in four Americans is disabled. And yet I'm generally the only disabled person in any room I'm in. And now I'm not going to other myself. I mean, it's not because disabled people aren't welcome. It's not that at all. It's that you If we don't have the energy, like, you know, disabled people, it's really a struggle for not for everyone, but for many of us to get up, get dressed, leave the house. We lose our independence. Yeah, so anyhow, that's something I'm very conscious of. So I started a company to bring virtual services at no cost to people who are disabled, especially since there's a huge overlap between disability and living with financial limitations. But yeah, I feel lucky that I was called to do that. So I was called to do that. I don't know. Yeah. I don't know where to even start. There's so much to talk about. I don't know where to start. Yeah, there's a
Katie Kay Graham
lot of talk about like, you don't have to start anywhere, you just kind of flow into it. But yeah, I think like, it's, it's hard, like, I think to us, just like an interviewer. And just like, as a person, it's hard to talk about diseases, and you just really want to be sensitive to people and their stories. And it's like, none of us are living in each other's shoes, right. And so we don't have that perspective of what that person's going through. And at the same time, I think it's like a does give us a really good opportunity to be grateful for where we're at. And sometimes I'm like, Oh, I'm so grateful for my body. And where I'm at, in comparison to this person that's struggling with this disease. It makes me kind of feel yucky to say that, right? Because you're like, Oh, I, I don't want to lessen their place. Right. So how do we like, how do we counteract that in our heads? Because I think it's like, obviously, if we're in an uplifted and grateful place, like that's only going to benefit the world and other people around us. And I guess I can, like the only way I can really relate to it is like the struggles I've had in my past. Like, I would want somebody to see them. And you know, I don't know, it's like maybe the light that I see in other people and where they're at has always helped and supported me to help me grow and get out, you know, get out into a different perspective out of depression out of anxiety. So I think it can be like a really uplifting and positive conversation. But I think people shy away from it, and especially disabled people, people with diseases like, do you feel like that conversations a little pushed away, because people are just afraid of like opening up to it?
Rachel Lando
So when I interact with other people living with chronic illnesses, they're generally very open with me. Yeah. Most people say, most people say, I'm so glad to talk to you because they know you can understand. And that's something I hear often, it actually makes me feel a little sad sometimes. Because I think we don't give other human beings enough credit. I think that we I sort of see us all as I see almost all human beings as chronically ill people. Yeah, all of us have something that we're fighting against. We all have some malady in a way. Well, most of us, we all say 98% and the other 2% Well, congratulations. That's perfect. But But seriously, I see us all as chronically ill and and I, I think that we don't give other people the opportunity to empathize. And I think with the disease community, there's this fear of being vulnerable. This, we already have to rely and I hate saying weak because I can only really speak for myself. I know, I have to rely on my husband, for instance, so much he, you know, a hands don't work, he ends up doing all the dishes, because when I do dishes, I get these digital ulcers on my hands. So they really hurt. They're very disabling. And so he does all the dishes, or he does all of this or he does all of that. And it's more so like, I don't want to burden this individual with my Shi T right now. Like that person's already done so much for me, I just can't layer this on as well. And so I ended up that's what I end up spreading my my craft. I kinda like find a couple of people and I'll talk to different people about it. So I don't know that it's, I don't know what causes it. I don't know if it's the perspective of the first of the individual living with a chronic illness. I I don't know if the if it's a true lack of understanding from anybody, I don't know what it is. But it is something that I experience that I see that people with chronic illnesses seem to feel more comfortable talking to other people with chronic illnesses. I, myself, don't exemplify that behavior. I'll talk to anybody. I, I just I like hearing about people's experiences generally. Always. I always have. So I'm a little weird about that.
Unknown Speaker
Yeah, yeah. No, I think that's like such a great perspective of we all have chronic illness. And I really believe in that truth. And we all carry trauma, whether it's physical, like it's manifesting in the body on a somatic level, or it's emotional. I think that's a really good perspective of it, and that we're all connected, and we're all on a healing path. And at the same time, it Yeah, it makes us all feel a little bit less alone. And we're not, we're realizing that it's really not about the, it's not about all that trauma, it's not about the chronic illness, it's not about what the ego puts on us. And that body identification of like the labels of good and bad and the judgments. It's kind of allows us to tap into this place where it's like, oh, we're all spiritual beings. And that's the essence that is within each of us. And that's our highest self. And that's the place where we're all really connected. And that's the beauty of it, right? And so it's like, we can all all transcend maybe this body identification. And maybe that's kind of what I tapped into, I felt so inspired in that class. It's like, Rachel, like, you're living your life to the fullest, and you're tapping into that place of essence, and you've healed and grown as a person, probably through your struggle. I mean, imagine like all of us do that, right? But you're really like vibrating at this, like inspiration level where that's just like you that's just the essence of who you are. Beyond the body. And maybe it's like, we each of us are there. But when we're wrapped up in that body identification, we might not necessarily be able to tap into that place. And yeah, allowed me to open up to that new perspective and feel that interconnectedness though we all are one. And it doesn't matter what like hair color we have, or skin color, what clothes we're wearing, it's like really that like vibration that we can all just exist in, which is really cool.
Rachel Lando
Yeah, I 100% agree. I just, I don't know, I wasn't always I wasn't always like this. Like the nicest person to be honest, I was really self centered. And there were moments of my life that were really trying before I got sick. And I feel ever since I've almost died, like so many times, I really have been very close so many times now. That I just think our our role as human beings is simply to uplift other people. And so, I don't know, I've met other people who have had near death experiences that seem to feel the same way that we're just here to inspire positivity. And they look at they're Michael Pollan talks a little bit about this too, in how to change your mind. But, but it's almost as if you have this spiritual awakening, like almost like doing drugs. Yeah. You have this spiritual awakening, and suddenly everything changes. And I don't know how to. It's not like I live without fear of death. No, but I used to be something that I was very afraid of. And now I'm just not it's not something that I think well. That's the futility of life as it were like that fatalistic attitude. Well, I'm gonna die anyway. So at some point, right, and that was, that was a real internal monologue in my head, like that was the shittiest sin culpa ever, you know? And now, now, that's not what I hear, like now, it's like, that doesn't matter. Just do the best you can right now. And, again, like the person who I are, who I do a lot of my work with, we partner with a lot. She also she had a stroke. And she says the exact same thing, and that ended up being our bond is that we both feel that way. Like there's nothing to be afraid of. Yeah, and that is definitely not who I was. Prior to getting ill I was just really afraid of things and I was self sabotaging and spiteful and jealous and it's just it's interesting to see the shift and to feel to be in the shift to see the thoughts change. And I'm sure you know you're a yoga practitioner and you're very active and you've had major transitions in your life too. I think that what I'm saying may have less to do with the disease and more to do with just aging and growing. And I wonder sometimes if we're, this is a good example of how we're all more similar than we think even if our experiences have shaped us. Maybe a lot of experiences shape us in similar ways.
Katie Kay Graham
Yeah, so beautifully said, oh, and I just want to mention, oh, it new hit the table. It's just no don't feel like that at all. But it might show up on the mic, which is fine. But I do it all the time. It was my water bottle, but just to warn you. I use my hands a lot. Like I love that perspective. I really do. It's like, I mean, I say this a lot on the podcast, too. But I really believe we're faced with our struggles because we need to heal something internally. And so it's interesting to hear you Rachel reflect back on. This is who I was before, and now I've shifted and gone through this healing process and now I'm at a different place where it sounds like you really internally like change your perspective when something externally right what's happening around you. And probably a lot of surrender a lot of letting go. Which I know is like I hear a lot on the podcast is like when some kind of life changing thing happens especially when it's faced with a body struggle that you really don't feel like you have any control over. You have to let go like you're forced to surrender in a way maybe you want to speak on that a little bit but can you also dive into scleroderma and what your experiences with it?
Rachel Lando
Absolutely. Um, before I do that, yeah, it's well you know what, no, I'll just do this what I'll do I'll I'll talk about the disease. So what what yeah, for me part of what I think I am so personally grateful and, and more how, I guess exude more levity, so to speak, is because I lost my mind like this. When we have a chronic illness. Sometimes we separate it into body mind, spirit, but chronic illness actually attacks, all three, apt because they're insufferable. They're actually one thing. And I lost the ability to think because my brain fog was so it was so impactful, the brain fog that my I lost the ability to walk, I could barely eat. I couldn't take care of myself, I couldn't even stand in the shower. But that was just how it started. So I think what I'm most grateful for now is just to have my mind back because I couldn't connect with anyone. I really was stuck. Just barely, barely human anymore. Okay, so scleroderma is a connective tissue disease, it essentially our connective tissue weaves through the entire body, and it's made of three components. It's made of fibers, this fluid aqueous matrix that everything kind of lives in. And then the biological the cellular component. For scleroderma patients, what's affected is the fiber fibers component. So your fibers I hit the five year fibers are collagen and elastin, and then a smaller wispier kind of elastin. And what happens is, is that the collagen allows forgive, or the lat the last, the last and allows for more give the collagen kind of keeps pulling inward. And so for sclera Germa, the collagen thickens, which means there's not much give so even though the elastin can can create more pliability or flexibility, the collagen prevents that from happening, leading to less. When your muscles concentrically contract, you can't move, you're stuck, you turn into a glorified statue. We don't exactly understand the mechanism of why this happens, why the body starts to lay down extra collagen tissue. Essentially, extra collagen tissue is going to have the same similar structure to a scar tissue. Just thick and immobile and so that's what that's how we describe it that my entire body is full of fibrosis full of scar tissue, your giant walking scar if they can walk, but yeah so So I live with systemic scleroderma, there's a couple of different kinds there's systemic, limited morphia and seen scleroderma. scleroderma means there's no physical manifestations, but the internal organs are affected morphia is like a patch sometimes morphia is described as limited as well which means the extremities are certain areas are affected, but with the stomach or diffuse, which is what I have. Every aspect of the body is affected. So internal organs as well as the extremities when I first got diagnosed and this is over 10 years ago now, but when I was first diagnosed, I had very rapid progression. So I I started showing I became symptomatic. Very, I had a terrible flare by May of 2012. So that was in May, but August, I had lost sets, three months, I had lost 40 pounds. I was very skinny, my hands had started curling and I was scared they put me in. I was diagnosed quickly I was diagnosed in August. So within three months of my first major flare I was diagnosed which is unusual, the average scourge of a patient takes about two years to receive a diagnosis. But not me, it was very obvious. It was extremely obvious that I had scleroderma. And so that was August by January, after having entered new medication or tried new medications, entered into some clinical trials, tried everything I could to fight it. I mean, I I was not really working. I had to be the hospital every single day to see different specialists.
So I believe my job but by January, my case was so rapid that I ended up developing complications with my brain, the inflammation that was present with the Scleroderma or, you know, I don't know if it's chicken or egg. It somehow affected my brain. I had brain inflammation, I was put into a medically induced coma for five days following an episode of psychosis in which I didn't know who my partner was my now husband, I didn't know who he was, he kept trying to talk to me, and he said, I would just run away, and that they had to put me in the hospital. And then when I got to the hospital, they just stressed that the medical tech team had to strap me down to the bed. Because I was so hysterical. I have no recollection of any of this. So I don't know if it's like a different turtle trauma now or whatever, but I have no recollection of this. I just remember waking up and I had lost even more weight, my muscle. And I was always like a muscular person. I had no muscles like I was just bone. I had lost the ability to walk in that time somehow. That was a huge struggle, because that was like my first I was always such an independent woman. And that was the first time where I had to call a nurse every time I'd go the bathroom or and they didn't always get there. And that's like when you're just like, Okay, this is what it means to be human when you're like, but But yeah, so that I ended up in the hospital for a couple of weeks, I had a pretty bad infection of my hand. I had Mersa, which I haven't had to suffer with. Again, thank God, but I had had contracted Mersa in the hospital. They don't know if that was what led to the we don't know the doctors really have no explanations for my case. I have found some answers and evoke the angel in the assassin, which talks about micro glial cells of the brain. I think I have an idea of what happened. But you know, we just don't have a lot of answers for these things. Anyhow, so that was my first year. That was my first six months. Yeah, just like crazy. Yeah, exactly. It was like a nuclear bomb went off and my entire life was destroyed. But it wasn't all bad. I when I came out of the medically induced coma. My partner and my boyfriend at the time had been my they call my father from in Florida and they said to him at that time. If you ever want to see your daughter alive again, you need to get on a plane right now and come see her. So he did he got on a plane, so he ended up bonding with my now husband, my then boyfriend, and they decided that we were gonna get married. So when I came out of my coma, my husband, I know husband was like, Hey, we should get married. And I was like, Okay, fine, whatever. Yeah, know, he had just laid on for posing to me, like, I don't know, in a normal way. But it was kind of interesting to come out of this and have this person be by my side, and say, I want to be there for you, I seen what you just went through. And I want to be your partner and get you through this. So that's that sort of thing. It wasn't all bad. Like, it's amazing. Not everyone is going to step up for us in these trying times. But it's been beautiful to see how many people do. So that kind of gives you like, gives you a different positive perspective, I think when you're going through it, anyhow. So that all happened. And then I ended up reevaluating my whole life. And I sort of just took a different direction. I still though, I still didn't have the mental health component under control, I would get these periodic brain inflammation periods back then I don't get them anymore, thank God. And what would happen was, it would show up as either not knowing who I was, so the psychotic episodes of psychosis or intense depression, to the point of like, suicidal ideation. So I was really in and out of the hospital, and there still aren't. Neuro psychology is, is becoming a greater field, but they really didn't have any answers. For me, it was all very hard. Okay, I'm talking a lot about myself. I know
Unknown Speaker
that's what this podcast is talking about yourself.
Rachel Lando
But yeah, and then, and then a year and change after I'd been diagnosed, I did get married to my husband. And everything was kind of normal. For a while I started working out a lot. I hired a trainer, which thank God I had the resources for and that the trainer gave me a significant discount. Thank you, person whose name I promised never to share that you gave me a huge discount. Anybody who knows me knows who it was. But yeah, I ended up getting into that. And then a couple of years later, we decided my husband and I decided we were gonna have a baby went through a high risk pregnancy. That was complicated too. With scleroderma, you increase your likelihood you need a high risk OB GYN, you increase your likelihood of having your likelihood is increased for preeclampsia for premature birth, for smaller verse. So my daughter was all of these things. I have suffered with them. A single umbilical artery might your your placenta and your umbilical cord form from your connective tissue island with connective tissue disease. It didn't form properly. She ended up we had. I mean, my daughter is perfect, but she ended up being foreign three pounds six ounces was in the NICU for a month. All of that also stressful. But at least my health was stable. And it stayed pretty stable with only a tiny bit of lung progression. The things you need to watch out for scleroderma are going to be pulmonary fibrosis so your lungs scar over and you can no longer process oxygen, you can deal with left ventricular hypertrophy which means the left essentially the left ventricle swells up and doesn't function efficiently. Um renal crisis is another common way to die or go comorbidity because we have these like more pleasant names for things and then some people have issues with their livers or their brains or but there's just there's so many issues that you can pass from but I looked again nothing was really progressing. We somehow it stopped after I got married. And And my point oh febrace is halted. Everything halted. But then, when my daughter was about to not quite to the GI symptoms suddenly got worse. And I don't know if it had anything to do with being pregnant. But it motility is another common symptom of scleroderma, constipation or diarrhea can go either way fun stuff. And my motility got so bad that my large vowel perforated. At that time I was on you know, immunosuppressants, and when you're on an immunomodulator, your tissues do not repair the same way. So I was flown down to University of Utah hospital from Park City, I was septic at the time. Long story to cover a couple days, but they missed, they missed the perforation of in Park City. But I was flown down emergency surgery, the whole thing was taken out and removed. So I became an ileostomy, you know, patient, and I have been for since I was 2017. So I've been living with an ileostomy for about five years, five years, August 7. And, and that was another shocking thing to recover from. But ironically, when that happened, I was like,
I have like, something changed. That was when there was a major shift. And that was when I was like, I'm going to effing deal with my mental health, I'm going to be the best mom, I can be. I'm invested. Now I am investing everything I have into being the person I've always wanted to be. And I did, I hired a private yoga teacher, she would come to my house, she's still one of my best friends. I love her. We have a nonprofit together now. But she was a Buddhist, she is a Buddhist meditation teacher, and she would come to my house. And for two years, I didn't really have much energy, or will or I also had no believer, and I was like, not a big movement person. So I had like, no movement, vocabulary, or, you know, internal movement like nature. So I couldn't remember anything she would teach me. So I remember I could always do legs up the wall that was like, Okay, I don't know what to do. I'm just going to do legs of the wall. And I practiced legs of the wall religiously, for two years, legs of the wall, and just laying on a pillow on a bolster. Because it was really uncomfortable even just to do that. I mean, my body hurts so bad. And I did that, like I said, for two years. And then finally, after two years, I was brave enough to go practice restorative yoga, in a studio setting. And I did that for seven months. And then someone said to me, you know, you've probably tried this vinyasa class, and I was like, I can't do anything. And she said, No, I think you could. So I started practicing vinyasa. And then that teacher said, you know, I think you'd be a very good yoga teacher. And I remember laughing, I laughed so hard, I thought she was kidding. And then she just stared at me with very serious face. Like, I'm not kidding. She's also still a friend of mine. And we're about a year later, I did sign up for yoga teacher training, and I did, just to really jump into it. But, but that was after everything had already just totally blown up. That was just the order that it came in. That was I think, I almost think we first need to make the decision to commit to ourselves before we can do any of this work. I think a lot about resiliency, I find myself thinking about it a lot. What makes because I I recognize that I am an extremely resilient person. I recognized that about myself, and a few other friends and I met a few other friends that are also very resilient. And we talked about it Well, why us like, what is it and we have no idea we have no idea what it was that led to us making the commitment to ourselves to just everyday give it our best. We don't know. But it's definitely like a, like a mental decision. And the other thing that I've learned, I've just said a whole bunch stuff. And the other thing that I've learned to over these last because it's been five years sincerely ostomy over the last five years in addition to learning to move again and and be the person that I want to be
I've just I don't know. I've just had to learn not to, I guess in yoga, we call it a part My grandpa like that dispassion that certainly John's word, I've heard it as indifference. But that indifference that dispassion that we cannot be tied to our expectations of outcomes. And that's one of those things that I've really had to learn. Because now that I've been teaching to this community for two years, the people that drop out of my classes are the people who, well, it's not doing anything for me, or it's not changing anything. And sometimes we don't do things, because it's going to change things, we do them for the sheer joy of experiencing joy. And, and that's something I've had to learn that I'm not doing this, because it's gonna lead to x, y, z, I'm doing this out of love. And that's been, you know, a major shift and living with, with this disease. But like I said, I mean, I really believe that all of us are living with disease, the more that I studied the human body, and I've spent a lot of time studying the human body. But the more that I study the human body, the more I see that no one's body is working in perfect synchronicity of perfect rhythm. So the things that we see on the outside, do not necessarily reflect what's on the inside. And that the only way we can find that out is by really listening and, and really watching carefully, and not letting our biases shape our views. So I don't know if I talked about the disease enough. But yeah, it's almost like, it's almost like, there's this I mean, I'm not, I'm not an alcoholic. I'm not a recovering alcoholic. But I've done a lot of things with AAA in the past. And I remember old timers would say, you know, if he was 10 years, they would get up. And they'd have to share their story. And their story was always this was my recovery, their story was no longer about their war stories and being drunk in the streets or shooting up heroin or whatever the case may be. The story at for them ended up being about their recovery, because that was the most important, I think, part of their life. And I almost see that happening to myself, well, yet where, yes, I know so much about the disease. I'm a public, you know, I do advocacy work, I educate other patients, but but really my story, it has everything to do with the disease, and nothing to do with the disease at all. Because the last 10 years of my life, like to me, that's the the last 10 really last five, I'm like, That's my story. That's who I am. And all these other things, too. But in this moment, those five years are the things those experiences are are what I really want to project out there. And that's what I hold on to.
Katie Kay Graham
Oh my gosh, yeah. Oh, gosh, I wanna like, I think I was just like, so like, engrossed in the story that I forgot I was an interview. Like, incredible. And thank you for sharing so much of it. Because I think like, that is so powerful in itself is showing up in your vulnerability. We can take so much from it like you're, it's such a gift. So thank you, for all of us. That resiliency really hit me because it's like, I don't know why I'm so resilient. But I mean, like, do you think it's this because I see your story. It's like you were the so many layers on top of yourself before the disease and then going through this. And then on the other side, well, other side, quote, unquote, whatever not even means, I don't even know what the side it is. But as you move through this journey, all of a sudden, you're like, I don't know why I'm so resilient. But don't you think it's from the, like, all the struggle and everything that you went through? I mean, your life totally blew up. Like, of course, you had to tap into that resiliency, it's almost like there wasn't because how does somebody you know, keep going and, and I think, too, like, there's so many things about what you said was so insightful at the end there, and it seems like you've really drawn in that yoga philosophy. That was like, cuz the whole time you're talking I was like, I don't know like, I want to know about the fear. Like I want to know about like, when you wake up in The morning and you know, you're living with this disease and you know, like something could happen, you know, in an instant to change your life or end your life or, you know, to make it harder or whatever. I want to, like, know how to, like, how do you move like through that? And how do you connect back into what's truly important every day. Because in a way, it's almost a gift that you're in that space of being able to tap into that because you're almost like, forced to tap into that, like, us, me, you know, people that aren't struggling with a disease, we aren't necessarily forced into that place every morning. Like, I consciously have to remind myself to be grateful to remind myself, you know, oh my gosh, like, what an amazing gift it is to have this breath when I wake up, what an amazing gift that I can just opened my eyes. But it's not like a thing that comes naturally. And I think there's a beautiful thing that we can all learn from people that have gone through near death experiences. It's like they build that resiliency, they build those tools, that mindset so that they can just like keep going. Like, it's so profound, I think like we can all just learn so much from that. The resiliency and then also like, what you're talking about integrating that yoga philosophy, it sounds like you've learned a lot about that non attachment, like letting go of expectations, like there's for those that are less familiar with, like yoga, like those eight limbs of yoga is really a way to live your life by and can give you a profound intention, almost like a profound intention with your life. It's like what you said, Rachel is like, you committed to everyday making it the best that you can. Yeah, like, whoa, like, that's insane in itself. For me, like the eight limbs of yoga, like when I tap into that space, like I'm able to set that intention, and I am able to tap into those, those lessons, because we're not necessarily like, we're not taught this stuff in school, right? Like, this is a real life. We like we're not learning learning real life stuff in school. That's, that's the unfortunate part.
Rachel Lando
Well, I don't know that those geometry lessons really help out in my day to day alive.
Katie Kay Graham
But, gosh, I don't even know you have anything to say about the mess I just threw out there.
Rachel Lando
I think I think we hide from ourselves so much. You know, there's this idea. Also from yoga, that we're living in Maya, we're living in an illusion in a world of illusion. And the reality is, is everybody wakes up in the morning and doesn't know what's going to happen to them. Chronically ill people have no ownership over this. Like, sometimes it's easy to fall into that self pity cycle that trap. Oh, my gosh, I'm scared. Well, I was scared before I was sick. My husband a couple of weeks ago, came downstairs and he was in a bad mood. And I asked him what was going on? And he said, someone's family member died. And I said, Well, who is everyone? Okay, like, is it a co worker? He's like, I don't know, we don't have any information yet. But I need to cover for somebody. It turned out his right hand woman's husband, who was only 40 dropped it in the kitchen right in front of her. And yes, he was overweight. But there were no signs and symptoms that her husband was going to drop dead in front of her in the kitchen. If we're not all waking up in the morning, realizing that we could die today. You know that that's just an illusion. I don't I just I don't think that I don't, I think that we can use that feeling as fuel to jump out of bed and say, Hooray, I'm here today. My first thing every morning when I get out of bed is I roll out of bed. I do my oil pulling. I go downstairs, I do a movement practice. I practice meditation. I'm not even thinking about me. I'm just thinking about the next stuff in front of me. So that question is kind of hard to answer because I have no idea. I have no idea if there actually is a difference in mindset for the chronically ill versus the normal or if if it actually is it just a quieter voice in the mind of those that are not living with chronic illness like it's just a more hushed voice. And then for resiliency. I really don't know. I mean, I was brought up by a tremendous mean, my mom had a lot of laws I'm not saying I mean, she had a lot of flaws, she was not always the best mom definitely have some trauma from her. Anyone who knew her understands. But she was a kick ass human being. She started domestic violence courts in Florida, she helped create rehabilitation programs for prostitutes. She did things for people who thought that they didn't have second opportunities. She helped show them that they did. And so he she, I mean, she's she has passed, but I, I think it's impossible to grow up with a woman like that. And not, although I know that it is actually possible to not have resiliency even with a mother like that. My little sister is mentally ill she doesn't, you know, she's not on a path towards healing right now. And so I know it's possible, but like, in my mind, I'm like, Well, I had that example. There's no other way like you just get up and do the damn thing. So I really don't know. I don't know why I have resiliency and say, My little sister does not I don't know. But it is something this is another reason I asked myself this, what is it? And I studied, I had the good fortune to study to read research papers on Holocaust survivors and resiliency studies. Famous, you know, you've probably all heard that Viktor Frankl quote, like, but Viktor Frankl actually did do research on this kind of stuff. And the studies are really eliminating that the people who tended to survive already had a natural resiliency, which, of course, that makes sense. Yeah, but they don't. They don't know. These people all had completely different experiences of childhood. They don't know why they shared that common that common quality.
Katie Kay Graham
Yeah, yeah. Yeah, no, it's a good point. And perspective on it. Because, like, it's almost like what I was like saying is like, don't you think it's your struggle that made you resilient, but it's almost like, it's like this innate, maybe just like essence or quality within you that. And I love how you say that you are sick before the diagnosis. Because I think like, that's also a good point to highlight. We, we all can be sick. And I want to remember this quote, but I'm having a hard time remembering it is like, it's so it's like, it's hard to change. But isn't it hard, harder to hold on to what you're holding on to and the weight of what you're holding on to? I said that like, so? an eloquent eloquently, but the kind of integrator in that too. But, yeah, so I like I have really makes me think about like, yeah, why do we carry these some of us carry this innate essence. And, you know, some of us don't. And it's just like, we're all individual, unique beings. And when
Rachel Lando
we do all make different choices, because what I hear what I hear you're saying is almost like that narrative structure that the hero's journey, there's a hero, he meets an obstacle, the conflict, it's the conflict that shapes him into the hero. He wasn't the hero until he interface with the conflict. But there are plenty of people who don't choose to interface with the conflict. And that's what I can't explain why I have I interact with a lot of patients, a lot of patients reach out to me on a daily basis. And just you know, Can you can you have my test me and because medical system needs some help. And a lot of people choose to give up. And, I mean, a lot of people who are not chronically ill choose to give up, but I don't. I don't. I can't I don't know. Yeah, I wish I did. I mean, we could help so many people if we understood it, but I don't. Yeah, I and I and I also have learned that no matter how present, I try to vie for people without resilience. If they can't show up for themselves, there's nothing I can do to help. And so I'm constantly like, looking now for more than more resilient people. But that that's hard to So yeah, if people surprise you, so
Katie Kay Graham
yeah, and I think if anybody's gonna discover the bad answer are part of it's good to be Rachel. Because I mean, like the work that you're doing, like you get to see that interaction with people and, and you've put yourself in this position that I like. It's really amazing. And probably also really hard because you are dealing with, with people that, you know, some of them don't want to maybe change or don't want to heal, but they're, you know, seeking this out maybe out of fear family members, and so you're seeing all of it. And that is like the best way that we can understand, like resiliency in itself. So, in a few years, let me know we can go on do another podcast, because we might need to just focus on this one topic. I think you and I are very similar in like, oh, I read this research study, like this paper. It's like who says that? And just like before, we are talking about the podcast, Rachel is just telling me like, some stuff she's working on and doing and I was like, Oh, my gosh, you're like, you're doing so much. And it's incredible. Like, let's talk about, I think the theme for me with you, Rachel is just inspiring. Like everything you say, I'm just like, wow, okay. Mark that down. But the Yeah, like, let's get into your business a little bit, because I think like, I mean, you already kind of talked about the motivation behind it a little bit, and maybe there's some more that you want to speak to, and it's called Patient Care movement. That's correct. Okay. And you you work with a few different types of methods to help maybe tell us a little bit about the methods that you help and and the clients that you that you help.
Rachel Lando
So, patient care movement is something I started during the pandemic to bring free virtual classes to people living with scleroderma. But it actually grew larger than that. Other folks, people with scleroderma would ask if their cousin with MS could join or one of my clients here in Park City has a rare condition known as hereditary spastic paraplegia. And so what ended up happening was I started researching these diseases. And I just became obsessed with disease. I actually, if I'm honest, when I was, I remember being like 18. And I was really obsessed with prion diseases to prion diseases. And I remember like reading books about like, shaken Princeville the disease, and I was like, Oh, this is alcohol, like, so I think I always had that. But now I now I can utilize it in a career form. So people would come to me, and that's what started. That's what continues to happen is people somehow hear about me and no, I like thinking on disease. And they come to me and say, I have this problem. And I'll do a bunch of research for them. I do this. Sometimes I charge people most of the time, I do not. Because again, that overlap with financial limitations and disabilities is major, I think it's 80% of people with disability fall below the poverty line. So I don't even ask, because people will give you their last dollar, if they think it'll help them. I don't know that it will help them and if it does help them, they can pay me later. But yeah, I. So yeah, I started this. Originally, it started with just, I was doing three group classes, I ended up changing my modeling, where I give any patient who contacts me three private sessions. During those three private sessions, I assess them. I try to figure out what they're looking for. I try to give them some homework and I see if they'll fit into my group classes. If I think they'll fit in well, with the community, they're invited to join. If they're not going to sit in while we continue with privates. Until when I say fit in. I mean, they need to be comfortable with themselves. It has nothing to do with the other people, the other people are going to be wonderful and welcoming. It has to do with them accepting their own limitations, because one of the biggest obstacles I've seen is people saying, well, I don't move like I used to and it's like, well, yeah, no, that's true. You might you may never, but that's so disheartening to people, right. So anyhow, I started this, it's grown. And that's one of the major things that I do. And for patients, I found that I have to take yoga and deconstruct it to smaller beds. So I teach yoga deconstructed. You can see if you're looking for specific practices, there's a yoga teacher named Trina Altman, who wrote a lovely book. I hadn't studied with her when I started my work, but I mean I've taken a few things with her since but, but Trina is focused A lot of these deconstructed methods I go even more deconstructed than she does. I teach I integrate some Pilates and I integrate some myofascial release for anyone with a connective tissue disorder, including the opposite, including EDS, or either ELO Danlos Syndrome. That, that fascial pressure, that pressure against the connective tissue, it it, it changes our mechanism, it changes the ability we have a for proprioception to know where we are in space, and allows for people to move a little better. So I almost always integrate a ton of props. So yeah, it's a combination of SFR, pilates, PT, and yoga. And it's, it's been really fun. Sometimes it's more like a standard chair yoga, sometimes it's not. Um, yeah, so I do all that. And then I also, I, because I also teach anatomy and physiology now, through that company to other teachers, with, I hope to teach teachers to start thinking outside of the box about anatomy and physiology, in case somebody like me comes in, because one of the reasons that it took me so long to find yoga is I tried to go to studios in the beginning, even before I had my daughter, and people would say, I don't know what to do with you, which was really alienating, not through any fault of theirs. They didn't know how to do this work, I want to make sure everybody who studies with me knows how to do this work. And then I also my company also does copy editing, professional writing for yoga for fitness.
So it has the patient side, the writing side. And then in addition, I started a nonprofit with some friends, some local friends that brings meditation, for at no cost to the park city community, we hope to start drawing in more marginalized members of Park City communities to these events, just so we can see a little bit of change locally to because it's pretty. This is a pretty whitewashed place. So we want to change that a little bit. Mix it
Katie Kay Graham
up. Awesome. Yeah. So awesome. Rachel, thank you for explaining your business. And I think what you're doing is really amazing. And I I just like I want to just keep talking to you. I think we're gonna have to do a part two, I booked the room until 230. So we're, we're ending our time here. But if you like there's so many things that you shared that were just really valuable. And I'm sure like we're all our own worst critics, right? So we sometimes you don't know how much we have to offer. And we don't like in our own headspace where you don't understand the perspective that we can give out to other people like how profound it can really be. And I just want to tell you like it's amazingly profound. So thank you so much. And, and, yeah, and so we're getting called out now. But Rachel, thanks for being here. I really appreciate it.
Rachel Lando
Thank you for having me. Katie. It was such a pleasure just to sit down with you.
Katie Kay Graham
Yeah. Awesome. And thank you listeners. I'm sending so much love to you and your body. I will see you all next week.
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