EPISODE 42: CREATING ART AMIDST PAIN

Guest: Ramon Shitta

Lauren: Welcome Ramon, I'm really glad to have you here.

Ramon: Thank you. I'm happy to be here.

L: And I, I wonder if you could share a little kind of overview of what your health journey has been.

R: Oh yeah, for sure. So I say my health journey started when I was maybe six or seven, um, which I guess is kind of young, but that's what, that's what's happening. So at that age I just noticed that when I would stand my legs would hurt and I just thought that it was growing pains or perhaps just how it was supposed to be because that's the only experience that I had, but it wasn't until I turned 15 or 16 that I started to have dark spots on my ankles. Um, and I thought maybe was just because I was like playing around or like bumped into something and there was a little bruise and I was like, okay, I guess, you know, people get bruised and life goes on. So like I guess it's going to heal. And then I realized that it wasn't healing. I was still at home then, so I went to my mom and I was like, uh, there's this thing that's like not healing and just so you have an idea -- my mom's a nurse and my dad's a pharmacist. Um, so a lot of like medical things. We pretty much just solve at home. Like my mom would like wrap us up or bandage you just up and we were just ready to go. So my mom was first race and I went to and I told her and she was like, yeah, this doesn't look normal. We don't know what it is, let's try to figure it out. So over the next two years we tried to figure out what it was, turned out that it was a leg ulcer, a venous leg ulcer for which I've had three surgeries on. And that's one thing. So now I know that my legs are hurting because of a specific reason and I'm okay with that. And then also a few years later I started to realize I was getting very tired because I am undiagnosed. So through a lot of that I was just spending a lot of time at home, pretty much not doing a lot of stuff and that was mostly this year. So to start off I'm from Nigeria, but I was born in the US when I was really young, my family moved to Nigeria so I went to college when I was 15 and then sos in Qatar in the Middle East for four years during college. And then I went to Paris and I started cooking because I really wanted to learn how to cook in the French style and all of that….went through all of this. I realized that I was getting more and more tired and I was starting to have more and more pain in my body and when I would talk to it, talk about it with like doctors or friends or like other people. The thing was their suggestion, which just that it's life happening, you're getting older, your body starts to hurt and that's just what happens. And at the time I was also working like 12 or 13 hours a day in the kitchen. So they were saying maybe it's just because you're putting so much stress on your body, that's why you're tired. So then fast forward to this year and I have not been able to get to do a lot this year. I joke and sometimes some of my friends think it's funny that I think I peaked when I was 16 because I have noticed how my energy has almost like started to steadily decreased since that age.

L: Mmmm.

R: Yeah. So that's pretty much my health journey in I guess a nutshell. And then of course there are other things you can ask me about, but that's like, I think a good summary.

L: Yeah. Yeah. And it sounds like a little sliver of what's going on for you has a diagnosis, but really the vast majority of what you've been experiencing has been kind of a mystery in many ways. And I remember you mentioned, um, that you, last time you counted your symptoms, it was like over 25 different symptoms, right?

R: Yes. Oh yeah. And that's also really funny because sometimes I'm not sure if I'm making them up or if they're actually real. So a lot of times I like to test with friends that I have and I'm like, so I'm feeling like this. Have you ever felt like that in your life? In a lot of times I get a... I mean probably once, but like, no. Then I was like, oh, I think this thing is actually real because it wasn't until I started listening to podcasts that I was like, oh, this thing isn't. I'm not actually making it up. Like it's actually a thing that's happening in my body.

L: Yeah.

R: Yeah.

L: That such a powerful question that I think even those of us with diagnoses ask ourselves sometimes. I'm not going to speak for everyone, but I do know I'm not alone in sometimes wondering, is this part of my disease? Is this a thing that sort of psychosomatic? Is it like you said, am I making this up? And it's a very vulnerable question. It's very, um, I think there can be a lot that comes up for people in that moment of oooh... is this real? And so when you add that layer of not having an official diagnosis, I imagine that's really exacerbated.

R: Oh yeah. For sure. Oh, I can't even imagine. Like I guess when you have a diagnosis it's kind of easier because you have I guess some literature or you can maybe get into a support group where you can meet up with people where you can actually discuss it, but when I've noticed being undiagnosed that I'm not even sure what, like, group to get into or how to even like bring it up with a doctor because I don't want to say too much or not enough because sometimes they like don't take you seriously and then sometimes they take you too seriously and then that also gets like super awkward because I'm like, no, I swear it's not that bad, but maybe it is. I don't know because I don't know what's happening.

L: Right. Yeah, so it's this trying to figure out how to communicate what's going on and the….Of course we know having a body, even all the explanation the world never truly 100 percent communicates what's going on for you. It's so hard to describe. I think sometimes and I actually love that question of wait, do I have to really communicate all of this? Because I'm kind of worried that you're going to take it too seriously, which I sometimes worry about too. Like if I share with a loved one, like oh my stomach's a little bit upset. And it's like, oh, it's time for us to call the doctor and like, ah, I don't know if it's time yet, you know? But like, but like you said, maybe it is time. I don't know.

*Laughter*

L: What has the process been like for you since I invited you to be part of the podcast? Like how did you make the decision to come and have this conversation with me?

R: So I decided to say yes because this year has been a transformational year in that this is the first year where I've lost a lot of my ability to do physical things and because of that I had to redefine how I see my life and how I see just things in general. And I'm 25, I just turned 26. So it's been a very fascinating thing too. For example, wake up and realize that like your legs just decide that they don't want to walk today or you wake up and you realize that you can't think clearly and a lot of my year has been dealing with the mental side of things because I've accepted that my body's doing weird things. I've had almost 10 years to prepare, but the part that I wasn't ready for was my mind kind of fighting me back because some days there are days where there's like a lot of depression and it's depression not because I don't think there are a lot of theories of what causes depression, but I don't think for me it's been like a chemical imbalance or something like that. For me, I believe it's because my body has been through so much pain and there's an actual reason for me to be depressed and there's some days where that happens and it's been super difficult. And then I've also been trying to work through a lot of this without taking medication because I don't know which medications I should be taking because a lot of them have like long term side effects that I've become aware of. So a lot in my journey has been doing... well, trying to heal my body through diets and exercise. So I've been doing yoga this year, which has been fantastic three days a week. Um, a lot of times I don't want to go because my body hurts so much, but I always find that at the end of the class I feel amazing and it's always worth the, like hour of torture to feel amazing for a few days. I've also been doing a lot of dance because I have found that like moving my body just in like a free form way helps me to feel much better and it doesn't feel as structured as like going to the gym or doing, um, that kind of exercise I feel, I feel like I'm going off topic. What was your question?

L: I just want to say that I love it when people go wherever their hearts take them in these conversations because it's, it's all, it's all part of it, you know, so just, you're, you're asking me what the original question was...it was I'm just like what your,  and I'm going to just mere you a little bit and say I asked you what your process was like since I invited you, but you started to tell me a little bit about like this year, this year has been important for you.

R: Yeah. Now I understand why I went on that tangent because that's the thing. So this year I stopped cooking after five years of working in the kitchen professionally because I really had a goal too, be a really awesome chef. I knew the cuisine I wanted to cook and I pretty much had a plan laid out that I was trying to follow, but of all that changes when you can’t stand up. So through that I kind of stopped cooking and I started exploring more of my creative side. I started dancing a lot more. I started painting a lot more. I started doing poetry readings, kind of like small comedy shows, things that require about an hour to an hour and a half of effort max so that way I can conserve the little energy that I have and part of that led into me doing a podcast, which was how I guess I messaged you for the first time and I started to realize how powerful podcasts are in general because I've always loved the radio, but a podcast is like a radio show that you can carry with you. And I think that's absolutely awesome. So part of wanting to do the podcasts was just me wanting to tell a part of my story that I've never been able to talk to anybody about, just because a lot of people aren't sick and a lot of times I try to have these conversations in real life, but the person I'm talking to has no idea what I'm talking about. And that's also very interesting, um, to realize. So I thought it'd be really cool to have this conversation with you because I have listened to the podcast and I've learned a lot from the podcast and I'm just kinda curious the things that I will learn or the things that will come up when I have this conversation with you.

L: Mmmm. Yeah. I think that's probably one of my favorite parts about these conversations is whether you are curious what comes up or not. Usually something comes up that you didn't expect, you know? And for me, too, like when you have conversations and you're just chatting with someone, you can never really know what's going to come up. So I get really excited for each guest because I'm like, Ooh, I bet they're going to learn something about themselves today.

*Laughter*

R: Oh yeah. It’s coming. I can feel it.

L: I was really struck by your transparency in your reflection after I initially invited you to be part of the podcast because I think there was some hesitation around not knowing if it was okay for you to be a guest. Like were you legit enough, if like I'll use air quotes when I say legit enough, as a person with a health challenge given the lack of diagnosis?

R: Oh yeah, for sure. There was a bit. There was a little moment where I was thinking that I'm not necessarily sick enough in order to have my voice matter, but then what was very interesting was that that week I had a bunch of symptoms and I was like, no, I think I'm legit enough.

*Laughter*

R: I really think that like being in bed and not standing this week as legit enough to be talked about as someone who's undiagnosed because I have a feeling that they are. Well, so ever since I've been on my health journey, especially for this year, I've been noticing a lot of health challenges that other people have that are chronic, that are not debilitating, and so they don't necessarily see them as problems. It's just that, oh, I always have this pain, or Oh, I always have this allergy, or oh, whenever I do this, this thing always happens, but it's not at a level where it's actually stopping them from living their daily life and hence it's not necessarily a problem. But it's only when it actually stops you from living your life that you're like, oh wait, I think I actually have to like stop and do something about this.

L: Mmmm.

R: And I was also a little hesitant because I don't want to say I'm self diagnosed because that's not what it is, but I have a lot of time when I'm laying around, so I've been doing a lot of reading and I have theories about what this thing could possibly be, but at the same time without having a concrete diagnosis or things that show up in the test, it's hard to actually confirm them, but I have also seen how some things I've….Some modifications I made in my life have made the symptoms lessen or increase. So there is a possibility that there may be a link, but I don't know for sure.

L: Yeah. You know, in all of this, the theme that sticks out for me, and you can let me know if this resonates, is some sense of isolation, like the question, do I belong in this group of, of podcasts, the guests? What do I have? I've got all this time alone. Maybe I'll do some research. Maybe it's this thing. I don't know. It just sounds like it could get lonely.

R: It's extremely lonely. But at the same time it's also been a very beautiful journey because I've had to dig into a lot of different topics to understand what this thing is about, so I've always been into biology and sciences and most recently I have been dabbing into genetics and how yeah, each person is formed by like parents and how like the health of the parents when the child was conceived has a relationship to how the child comes out and what particular things would be expressed or not. You're like epigenetics and part of me has been spending time looking back in my parents and seeing where they were in their life journeys at that time. What were their diets like? What were their stress levels like and how some of those things that I see in them or directly mirrored in me, so I don't necessarily see it as it's their fault or anything like that, but it's just really fascinating to see that this health journey I'm on is multifaceted and it's a culmination of a lot of things that you don't necessarily think about in your daily life until you actually have to.

L: Yeah, and it sounds like yes, it can be lonely and like you just said, it's also really, there's something very fascinating about it to you and it sparked you to keep researching and learning.

R: That's the thing is that although it is lonely, I'm also in year 10, so the first few years were pretty intense of like, oh my gosh, what's going on? But then after a few years of just nobody relating to me, I kind of just stopped talking about my health with people in general because I now almost know for certain that they won't understand me. So then I kind of found it kind of unimportant to bring it up and make the conversation kind of awkward. That's why I just kind of like kept it to myself, so in a way it hasn't been lonely talking about what's going on in my body, but in the way I found other ways to connect with people that are not related to chronic life problems because I realized that not everyone has them.

L: That's so powerful what you just said, which is after enough time of not being understood by the people around me, I learned to just stop talking about my health and so you're surrounded by people. You have folks in your life that you can connect with. It's just that this isn't something that you connect about.

R: Exactly.

L: This whole portion of your reality, this existence or not even portion, I'll just say like a layer of your life that goes unrecognized in many social situations. That's really, and I just want to say that I think a lot of people are going to hear that and say, Oh, I'm so glad that he just gave voice to that because so many of us have learned to keep quiet about our physical experiences.

R: The thing is that until this year when I started the podcast and I started painting again because I've always been painting throughout my life, but I never thought. I never actually decided to show it until this year. I've gotten a few messages from people that have known me because they had been like, oh my God, I have, I've had no idea. And I'm like, well that's because it's not something that I talk about.

L: Right.

R: But that doesn't change the fact that like every single time we've hung out, I've been in excruciating pain, which is why sometimes I just go and sit down, but it's not something that I felt was really worth bringing up because I feel like it would just kill the overall vibe and I don't want to be a bummer about it. You know? I'd rather just like leave early and go like take a nap and just not let it affect the other person.

L: Mmmm.

R: But I've also realized how damaging that is, especially a few months ago. So right now I'm living in Buenos Aires in Argentina and there's a culture here of just being very open and verbal with your emotions and with that I've met a few people who have health challenges who just talk about it openly and that was the first time that I actually, it's a form of friend group where people have chronic issues and they actually talk about that and I'm like this has been amazing. I can't believe I haven't had this in my life this whole time time.

L: Oh wow.

R: But also see how difficult it is because they are also outsiders and they also are not understood by most of their friends. But when we get together. We can talk about this like one weird part of our lives that is like 90 percent of our existence because we might not take a shower today, but finally we get to like talk about it and like just complain about it together. It's fantastic.

L: Oh that is so beautiful and so wonderful that you have found them, that you're creating connection in this way. And yeah, I just think of how much of a relief I feel when I gather with people who just get it and you don't have to explain it in the same way. I mean you still have to probably explain different things about the specifics of your own situation, but there are just some things that we understand about each other when we're living with health stuff.

R: I'm curious, so for you, because you're also a therapist, I wonder how your own support system looks like because I feel like you also have a lot of tools plus you've worked with a lot of clients and so I feel like you have a large tool bag that you can kind of pull things out of. So I'm curious what you're like go to tools might be.

L: Well, I think as far as support is concerned, I didn't realize until a couple of years into my health journey how important it would be to have those people that you just described, those people who get it, who you don't really need to explain the whole thing to them in order to get the empathy and understanding and that, you know, that look, that's like, oh yeah, I get it. Um, and so I, once I started to be more intentional about it, I started gathering like almost like a bouquet of flowers, like a bouquet of friends who have health challenges all over the map. Um, and I have a few friends in particular who we can just text each other and be like, oh, it's one of these days, or you know, I get to show up for them when they're having a really difficult period and just give them love in a way that I wouldn't know how to do if I didn't have MS. So that for me it's just a big part of being known and understood and seen and being able to be there for others.

R: Oof. That's a heavy one. What you said is really an important thing because sometimes I can just send a message and be like, life is not happening today and they're like, I completely get it. Life was not working for me yesterday, but today I was so much better and we're going to try again because sometimes you just need a day to chill out and then the next day is like completely great.

L: Yes, and I will say I'm going to get philosophical with you for a moment because I so relate to that sense. Like life isn't happening today is this idea. There's this idea of what life is. Right? And I get what, what I mean when I say that it's like I'm not going to be productive. I'm not going to be creating something and I'm not going to be giving to others and the way I would like to be. I'm not going to be running, jumping, playing the way I would like to be. And yet there was this moment I had like maybe a year or two ago where I was lying in bed and this thought came into my mind clear as a bell. This said, you're wasting your life, and in that moment, this other deeper wisdom came in, scooped, scooped me right up and said, you are never wasting your life. And I realized like, oh, that's the medicine. That is it. I need permission to, to just be whatever I am at every moment and know that, you know, even though it's a beautiful day outside and I grew up with that cultural message, like if it's beautiful and you don't go outside, you're wasting your day. I, I took that in and reprocessed it and said I get to experience the beautiful day from inside, you know, and just because it's pretty out doesn't mean I can't enjoy the way that, like the breeze catches the curtains on my window, which are moving more than my body is moving today.

*Laughter*

R: Are you familiar with Brene Brown? 

L: Yeah.

R: So she has been monumental in my journey because I've been listening to a lot of podcasts and audiobooks because reading has been difficult. There are days where my eyes just don't read properly. Um, so I just stopped putting myself through that torture. I started listening to one of her books called daring greatly, which I've listened to a few times is about like when you're knocked down, how to get back up because I've had to do a lot of that this year and there was a line, I'm not your feelings in that book or another book where she was in a particular situation and there was a wisdom that came through that said, what I do is enough. I give myself permission to inhale and exhale. I was just like, oh my gosh, yes, my eyes are open and I can pay my rent and I can eat. I am. I am achieving like I am okay. Like just because I'm not. My life doesn't look how I wanted it to look before I knew that I had a body. That doesn't mean that this thing that it's evolving into is less valuable in any way. Like nothing says that you should be able to walk everyday of the year. Nothing says that you should have your health intact at all times throughout your life. Nothing ever said that.

*Laughter*

L: It’s so true!

R: Of course it's normal because that's what the majority of people aren't like sick, but just because you are dealing with a different way of life, it doesn't necessarily mean that your life as less valuable.

L: Mmmm. It's so healing to hear that message that has resonated in you and is resonating in me. I just got chills while you were talking because there is a whole reframing of reality that we almost must do when we have health challenges in order to keep going in order to continue valuing our lives. What falls away as everything we thought was important. That isn't important. And what is important is still stuck to our bones.

R: Mmmm. Oh yeah. No, but that is what is important has been, I guess the driving force for a lot of this year. Um, because this year has been, has tested me in many ways and honestly I didn't think I would make it through this year because there were a few moments where it got a little rocky. Um, and I started to question existence and all that fun, beautiful stuff that just comes when you just lie in bed for too long.

*Laughter*

R: Yeah, you just have too much time to think. And I started to get to this place where I just started to accept that like the times where I actually have the ability to do things are extremely important and its own in a way made it easier for me to say no to certain things because before this I was the total yes men because I could be. Um, and then now I think about things where it's like, oh, do you want to come to this party? Or Oh, do you want to go to this event? Or oh, do you want to do this? And I sit there and I think, okay, so if it's next year and I'm looking back on 2018, would I have regretted going to this event? If the answer is yes, I'm not going, I’m gonna rest, but if it's something that I feel I'm going to remember that's going to give me energy that's going to make me want to carry on for the rest of the year. Then I'm like, of course I'm going, well, that's been a very hard thing to kind of weigh and see what is and what isn't important and like how to properly or nicely disappoint friends of mine who've been trying to see me for a month because I'm really just too tired. Um, then they're like, oh, but I can come over and see you. And I'm like, yeah, you can. But like, that's also really draining and it's not that I hate you. Like I really like you. And I would, like, I'd love to be spending time with you, but no.

L: Mmmm. Yes, and I want to say both as a person who relates to what you're saying in terms of needing to say no sometimes. And as a friend of people who say no sometimes that it is a deepening of the intimacy in the friendship when we can be real with each other. And I know that there are times when friends who said no to me and I almost feel like a sigh of relief because I'm like, oh, I can really trust that when they say yes that they really mean it.

R: No, it actually feels good to get rejected sometimes. I say that and they’re like, no, it sucks. I'm like, no, really. Because then you realize that you're human and you realize that like everything is dynamic.

L: Yes.

R:  And like, yeah, sometimes I just feel like the person in front of me says yes because they feel bad. When someone says no, it's like, oh, okay. No. Sure. Thank you. Thank you for saying no. That like gives me life to know that I'm not as special then as I think I am and like.

L: Right.

R: This thing is fragile. Perfect.

L: Yes. And when we can say this life is fragile, it means we're allowed to say no. It means we're allowed to play it by ear. It means we get permission from each other in the imperfection of having a body to also be imperfect. That we don't have to hide that part away, which I think is sort of the antidote to isolation. When we can say to each other. Sometimes I have to give up. Sometimes they feel depressed. Sometimes I feel like I can do things. Sometimes I don't. When people model that, when they do it in our friendships or when they do it publicly, I think it heals on a really big level.

R: Yeah, that's for sure. Something that's really fascinating that I have started to realize is because before I was talking about like the link between parents, children and all that fun stuff. So growing up I never really had the best relationship with my parents. Not because they weren't good parents just because like, I didn't know how to relate to them and for the first time I actually started to relate to my mom because throughout this whole journey there've been so many theories of what could be wrong with me and for a brief period one of them was arthritis, but then I did x-rays and there no actual like degeneration in my joints. So then possibly it's not arthritis, but it behaves like arthritis, but I also don't seem to be inflamed so it might not be rheumatoid arthritis, but like no one knows for sure. I'm still trying to figure it out. But then I had a brief memory of a dream that I had because I've had a lot of dreams. I pretty much dream five days a week.

L: Nice!

R: And I remember this particular day where I remember seeing my mom wearing wrist braces as a kid and I just never really understood that because I used to see her type with a pen, so she had a pen and she'd be like typing. And I used to think that that was very inefficient. I'm like, you can type so much faster with two hands. And then a few months ago after I thought I had arthritis, I called her up and I was like, I have this memory of you typing with a pen and wearing wrist braces. What's up with that? And she was like, oh, it's because I have arthritis. And I was like, what? She's like, yeah, it's because I have arthritis, and I was like, no, no, no, I heard you, but what do you mean by that? And then we started to have a conversation and I realized that she also has a lot of health challenges that we never talked about and I was like, why didn't you ever bring this up? And she was like, because it wasn't important. She's like, when you were growing up, if I told you that my wrists hurt, it wouldn't make no sense to you. And then for the first time we had this like almost two hour long conversation of talking about like our bodies and things that hurt and things that didn't hurt and it was just so fascinating to realize that this person has been in my life for so long and I've been having conversations with them for so long, but at the same time I was never curious enough to ask them about a very specific part of them and hence they never told me about it. And it's made me realize a lot that we're all going through very, very interesting things. But a lot of times, unless you're an open person, if you're not asked about it, you don't say anything about it.

L: Yes. That makes a lot of sense. And that you as a child would not think to ask because it was so integrated into what reality was for you that it just seemed normal probably. Right?

R: Exactly.

L: And then as an adult having this dream and piecing it together and saying, wait a second, there's this whole part of the puzzle that I didn't even think to ask about. And that point of connection between you and your mother where you could then both open up and have this very meaningful conversation. What a cool point of connection that is.

R: So cool, right?

L: Yeah.

R: And I find that really interesting because I used, I used to see a psychiatrist for a little while back in the day. It was always very interesting because she talked a lot about how her job is getting people to like talk and realize things for themselves. So I'm kind of curious in your practice how that manifests, how maybe how you feel when you realized that you've made or you've helped a person have like an aha moment.

L: Well I want to connect it back to your original question too. When you said what do you do as a therapist and what's your support system? Because I think it can be very easy for me or for really anybody in the helping professions who really care about other people's healing. Sometimes it's easy to like take the focus off of ourselves and just focus entirely on clients. So it's been a really great constant reminder to me to keep taking care of myself. But I will say that one of my greatest joys is sitting with someone being really as present as I can with them and helping them to see themselves in a new way that helps them to move beyond internal limitations because there will always be external, you know, things that get in our way. But the internal stuff by, you know, sitting with people. As a psychotherapist, I get to move with them through areas that maybe could have held them back for the rest of their lives that they start to uncover and see and loosen up and say, Oh wow, I guess I'm actually okay, or I guess I don't have to be so hard on myself. Or I guess that thing that I was always told about who I was might not be true or I guess that thing that I was taught to want isn't what I really want. I mean, that is just so thrilling to me because as a human I'm going through my own processes of that uncovering. You know, I have my own therapist, I have my own friends who I talk with about deep things that it's just. I think that's kind of like one of the biggest joys of being a human is that we get to just keep learning about ourselves and clarifying who we are, who we really are versus who we think we are or what we were told we are.

R: Yeah. In many ways this year has been a lot of that. A lot of this is what I told, this is what I was told I am or what I was told I should be, and then doing an actual experiment in the real world and realizing that those two things clash and they don't make sense and I'm like, oh, okay. So I guess that means I could do things in a different way and then going through the process of even learning what that means to do things in a different way because I feel like a lot of times there is no roadmap for anything really. Because you're the only one having your own experience.

L: Mmmm. So true.

R: I'm actually now I'm going to like use this as a personal therapy session, because I can.

*Laughter*

L: And I'd want to ask what advice would you have? Because I feel like though I am undiagnosed, I spent so much time trying to understand what's going on that I'm in a place of peace where.

L: Mmmm.

R: I'm no longer angry about my body not responding. I've had two kind of shift my life career situation in order for it to work for me. So now I like work online and I'm like trying to do more of the more things that require less energy. Well, what I'm kind of trying to ask is what advice would you have for someone who is receiving the shock for the first time? Who is also undiagnosed where they don't know what's going on but they're not as...They're not at peace with what's happening either because they're not at a place or they don't have the amount of time or they don't have the resources or they aren't as able to come to a place where they're fine with their body. I'm curious what you would tell that kind of person.

L: Yeah. We were wondering like how do you proceed when everything feels so up in the air and it's hard to find peace because this is really happening. But you said there's also that sense of shock tha….oh wow, there's really something going on here with my body and I don't know what it is and just, you know, because I'm not your therapist are really most people in the world. I'm not their therapist. Right. I'd be very busy. Otherwise, I can answer as you know, as myself knowing that I'm informed with a psychology background, but just as a person, you know, the biggest thing that I wind up encouraging in myself and the people I love and in my clients is to begin bringing kindness towards the entire process, including the part where we feel angry, including the part where we doubt ourselves. To know that all of that is allowed and it's part of being human, that it makes sense to not have answers. It makes sense to be mad that we don't have answers because there's a lot in us that can get unlocked when we stop rejecting the hard parts because we've got a lot of wisdom in us, but when we can offer the kindness towards towards the stuck parts, towards the excited parts, towards all of it, that's when I think most transformation happens. It doesn't often happen from efforting, right? Like when we think if we just try hard enough, we can be happier. If we just try hard enough, we can find all the answers. The kindness allows us to be content even without the answers and I also don't want to ask like, Oh yeah, just be nice to yourself and it's this easy thing for a lot of people. It takes a long time to really understand what that means and I think some people use like a mindfulness meditation practice, which I think is great and would encourage anyone who who wants to start to develop that skill set in a more official and structured setting, but then also reading authors that encouraged the same thing. I think Bernay Brown is one of them. I always like Wayne Dyer and Louise Hay and I am a big fan of Kyle cease and just a bunch of really inspirational people. Matt Kahn is one of them for me as well. Tick Not Han writes some really beautiful stuff about how to be a person and live in this world. So, so the. So that's my. Those are my first thoughts on what you just shared because I think it's a great question.

R: When you were talking about that, I was thinking about how dynamic being a person is and how on a daily basis the whole thing changes. Like you have your identity, you have your body, you have your mind, but day to day things change a lot. Meditation and Yoga has taught me that constantly.

L: Mmmm.

R: Um, I don't know if you've done yoga for any period of time.

L: I have done a little bit. Yeah.

R: My favorite part is that it's always hard and it's always frustrating because there are days where you can touch your toes and there are days where you can’t. And it's not necessarily that you're not putting in the effort, it’s that your body is different and your body's always changing.

L: Oh, that's so beautiful.

R: When I first started my yoga practice, I used to be angry. I'm like, I put in so much work and I could stretch so far and it's two days later and I can do it anymore. And then my teacher was like, your body is always changing and it doesn't necessarily matter. He's like, you're not doing yoga so you can touch your toes. You're doing yoga so you can connect with your body. After you connect with your body, you can start to push it further, but not until you have that connection and you actually understand what's going on within your body. And that has been super important, especially when I've been trying to understand what rest means for my body. Take a moment to like scan and be like, I'm tired. What does that mean? It means that my legs hurt right now. It means that my neck is stiff, that I feel like I need to take an hour nap. It means that I probably should cancel this thing I have to go to because I'm really, really tired and not just like tired and the a five minute nap would do it for me, but in so many ways it's just taught me how to like find myself within the body that I have been using for so long and it's almost like I didn't realize that I had it until it started to give me a lot of problems.

L: Mmmm. That makes a lot of sense.

R: But then I also recognize that I feel like this is something that having a health challenge has given me because I see a lot of people who just don't have that consciousness.

L: Right, and I think that your love that you described yoga as being particularly exciting to you because it's so frustrating because that wouldn't be what I would have guessed would be your favorite part and just hearing you talk about it makes so much sense. And that piece that I heard as a thread is like what your yoga teacher said, is this not about being able to touch your toes. You're doing this to be in connection with your body. And if we zoom out to looking at our entire lives through that lens, it's like, are we living just to have a good experience? Well maybe sometimes, but ultimately this whole thing is about our relationship throughout the day with ourselves. The connection we hold with ourselves and what you just talked about was that inner conversation almost like you are a friend to yourself saying, what do I need? What's happening right now? How can I listen to that? How can I respond?

R: Yeah, that's been very important. So one part I think I left out is that, no, I mentioned it. Depression has been like an extra spice to my life since I had been kind of younger. So when I talk about depression I talk about it positively and a lot of times when I talk about it possibly if not met with the best reception because I always see depression as your body telling you to, well your whole being telling you that you need to stop something because I don't think that anything that we experience comes out of nowhere. Yes. You might be dealing with like genetic issues or other things make your body or your mind not behave in a normal way. Whatever that is. I've always enjoyed bouts that I've had of depression because it's almost like a red light that comes on and you just have to stop. Or like the day when your car just doesn't start and you're like, oh, I've pushed too far. I need to do something about this.

L: Mmhmm.

R: And it doesn't change the fact that it's extremely uncomfortable and depending on how long it lasts, it could be days, it could be weeks, it could be months, but I've always found that spending the time to like pick apart, take an inventory of what my life is during that period and then starting to like peace out, what's good, what's not working is this supporting my body, this is not supporting my body. And then when I started to do that inventory and drop the things that almost like drain me, I start to feel better.

L: Yeah.

R: It's almost given me this weird relationship with the negative emotions that I have, but almost I see them as a positive in a way.

L: Mmmm. Yeah.

R: I don't know if that makes sense.

L: Makes a lot of sense. And also I just want to acknowledge what you said that you, when you talk about your experience of your own depression and depressed feelings, that it isn't always met with the best reception and that I want to say it's so important too, I think because the show especially is about individual people's ways of living. This is a real way that you frame it for yourself and so you have at least for me, infinite permission to see depression, how ever you want to and that is what works for you, looks like a little dance that you're doing because, and this is the thing is yes, it can be triggering for other people to hear that and feel invalidated and feel like you're trying to tell them how to live their lives and you are living your life and this is your truth and so I think it takes a little bit of actual actually a little bit of bravery to say that in a more public setting because it's not necessarily the most popular perspective and yet just to come back to this is what works for you and so you've kind of framed when things stop working in some area of your life...You pause and you say, let's get into this. Let's take an inventory, and that totally makes sense and it sounds like it's worked really well for you because it's helped to provide guidance in your path.

R: Yeah, for sure. It's helped. I mean, it doesn't change how like difficult it can be to shower and get out of bed when your body just says, no, not today, but it's always nice to know that this thing could possibly resolve itself very soon. We don't know how long it's gonna take, but we're going to be patient and we going to keep chipping at it and it's fine if you don't go outside for a month as you try to piece yourself together, but that also is okay because there's no right or wrong way to be human.

L: Mmmm. Thank goodness. Thank you for that medicine.

*Laughter*

L: Can you talk a little bit about your art and specifically I saw this beautiful painting series about your pain and the days that you woke up and had so much pain, but you still created something visually physically.

R: I almost teared up. I know that I didn't almost. I started tearing up when you asked me that question, so in many ways I feel like I am still here because I decided to start creating art this year. I've been drawing ever since I was a kid. I was kind of a weird kid. I didn't talk a lot and instead of talking I would just like draw, but I always did it for myself. I never did it for any other person. Until about two years ago when a friend of mine saw, who is an artist, um, she saw some of the things I didn't know. She's like, this is really awesome. We're doing a group show together. And I was like, what? And she really forced me out of my comfort zone and then I did with my show for the first time and then I realized how much something you do kind of connect with another person and it's nonverbal. So then this year when I was and my apartment for most of the year, I started to paint on the days where I wanted to give up and that was where a lot of that series came from. The ones that I put up, there are a lot of them that I didn't put up, but it was pretty much...so how I work is that each painting or each drawing comes with the story. And it could be a piece of poetry. It could be an actual like long story. It could be something about, well, my story, but I projected into someone else. Each of those images have very intense emotions locked into them and very intense stories that come with them. So anytime someone sees one of them and they say something like, I really like that, or that resonated with me or that made me feel peace or that made me feel angry or that just made me feel confused. I love that because I feel like it's actually working in a way.

L: Mmmm.

R: Because I guess because drawing and painting have always been normal for me. I've never understood people who buy drawings or paintings because I just always thought that for me it’s a meditation, so I'm just like, well, I mean if you feel a weird way, just like bring out some paint and solve it on the canvas. But then recently I've found that that is not how everyone sees art and it's been an interesting evolution to see that something that I have made in a period of very intense emotion and pain. It can be something positive for another person and that can be healing for them as well.  Because something that was really fascinating was I started to share the stories of the paintings and how they came about and I would just see this look on people's faces of like, Whoa, I had no idea. And I'm like, yeah, because when we hang out I try not to be a bummer because I'm busy being a bummer at home. I don’t want to bring that with me.

*Laughter*

L: It’s so cool. It's so amazing. I want to just reflect back to you something very powerful. Well, you said a lot, but one of the things was a, this is what helped get me through this year is creating my art.

R: No, that's real and I've been looking back on a lot of my old sketchbooks because I, I have them with me and I'd take them everywhere I go and I've recognized that a lot of the things that I actually write down or draw come from places of release, a very deep things that I necessarily feel like I can't share with the next person easily. Of course you can talk about the weather and it takes five minutes, but diving into something as intimate as your body betraying you, it's not something that everyone has a vocabulary for.

L: Mmmm.

R: So in those moments, I kind of, I want to say runaway into paints, but that's what I ended up doing. I ended up escaping and leaving the real world and going into this very safe space that I have to feel everything that I need to feel and let it out so that I can continue with my life the next day and just know that like yesterday is there. We're done with that. Tomorrow's going to be another day. We don't know what's going to be, but as far as today is concerned, we got this. We're living for another day.

L: Well, it's pretty wonderful and also kind of a neat call to action for all of us to consider creating as a part of our journeys with our bodies, with our lives as a way to care for ourselves as a way to be in communication with what we have inside of us. And I love that for you, art comes naturally and you just, that's just like if I have a problem going to solve it on the canvas, that's what I heard from you. That's so cool.

R: I really resonated with the episode that you had with Blur. I listened to that on repeat. It's on my ipod because it was just so fascinating to see that. I don't know. I guess in the world, use, forget that there are people behind a lot of the things that you see.

L: Mmhmm.

R: Like the chair or the table or your curtains or like the car or maybe the person that like planted the grass that there. There's a person that has actually touched it and it was just very inspiring to know that  because I'd seen those photos or pictures of those of her work before and I had no idea that it was her and then to hear that story behind it, I was just like, oh my gosh, I can't believe that like most of her time is spent not doing that. But then when she has the ability to, she puts in so much effort to make something so beautiful in the world.

L: Mmhmm.

R: That's kind of been my motivation to use my downtime or efficiently in a way.

L: Yes. Absolutely. I think that's so cool. I want to. This is like full circle now. I'm so glad that that episode has been life giving for you and I want you to know that the email you sent me that told me that when you first introduced yourself was life giving for me. That I felt nourished to know that you were nourished by the podcasts because you know, we're creating in this life. We're creating things. We don't necessarily always know how they impact folks. Not everything we do is for everyone. But when someone who resonates with what we do reaches out to us and tells us that it is such a gift. And so I want to thank you for being someone who took the time to really tell me how the show impacted you.

R: I can't thank you enough for going through the effort of making the podcast, um, because one of the first things that I started doing was looking for chronic illness content online generally because I have, I have a youtube channel but it's not really active, but I used to put up videos from when I had my leg ulcer just like talking about what a leg ulcer is and things you can do about that. And I got a few very interesting messages from people were like, thank you for talking about this. I haven't known what to do with mine and thank you so much. So because of that I started looking for like chronic illness podcasts and a few of them came up in. One of them was This Is Not What I Ordered. And I started listening to pretty much everything just to kind of see what things would resonate with me, what, like things I could research, what therapies I could try, what emotional support things I could try. And that's why I finally reached out to message you. Because I was going to do podcast episode about just chronic life problems. And um, I wanted to mention you in it and I want to make sure that I had your permission because I didn't want to, I guess, share the podcast in a way that you didn't see fit or….

*Laughter*

L: Well, I thought that was just so thoughtful of you and I loved listening to that episode, by the way. Actually, let's, let's just take a moment to even talk about your podcast. I just was so thrilled when you shared that you were creating your own.

R: Yeah. So the podcast is paused right now because after I started the journey I realized that not having a consistent supply of energy makes it difficult to make a weekly podcast. So, right now I'm on a hiatus, but I'm going to come back with a plan, probably get a podcast editor and all these other things so that the process can be much easier. I was spending a lot of time producing it, but the podcast came from a place where I was realizing that there were a lot of things that I'm going through that I don't have conversations with other people about. And I wanted this to be a 30 minute blurb where it starts something in you and then that's like the impetus for you to message me so we can talk about these specific things and it got really intense and it was really difficult after a while because some people in my life walked up to me and they're like, so let me tell you a story about x. and I was just like, oh my gosh, I had no idea. But then I was like, well that's why it works because otherwise you wouldn't feel comfortable enough to bring this up because you don't know if the person you're talking to is familiar with the topic, like sexual abuse or like chronic life issues. So that was pretty much where the podcast started from and I was feeling not enough for quite a while. I was laying in bed so I was like I need to do something new so I can feel like I'm enough. And that's where the podcast came from. But I also burned myself out because I was pushing myself too hard. So I am going to start it up again. But with like a concrete plan.

L: Well I'm glad that you that you even started doing it because so many of us don't do the thing unless we feel like we're an expert first or unless we feel like there's a quote unquote plan or we know what the outcome is going to be. So there's something very beautiful about saying, I just want to create this thing. Even if I need to pause, even if I need to change how I do it.

R: Bernay Brown, I'm calling her back in. There’s this video called it's not the critic who counts and it is such a wonderful short video just talking about how the thing that's important is that you do this thing that your body is calling you to do and it doesn't matter what anybody says, unless they're an expert in that field and they have like actual concrete criticism to give you. Even if they do, you choose to listen to it or not, but you're not making it for them. You're making it for yourself. You're making it because there's this thing that like, do you need to scratch this itch and you have to create it because not creating it would just make you feel dead inside.

L: Yeah.

R: And that's kind of the approach I've been taking recently.

L: And you've been letting your passion express itself through you and also just a quick reminder, which I think you already know that you are enough with or without your podcast that you are totally, perfectly enough lying in bed. So just a little quick reminder for you and for anyone listening.

R: Oh yeah. For everyone listening, you are enough. Even if you just open your eyes and you took a few breaths of air and you went back to sleep because that's all you had. That's all you had in you. You're just enough.

L: I love it. So Ramon, what does it mean to you to live a fulfilling life and has your definition of fulfillment change through the course of your health journey?

R: I used to think a fulfilling life was doing things that needed to be done because that's what fits into the general idea of what would progress society, but now I'm at a place where I understand and I pretty much embody the fact that a fulfilling life is doing whatever you're able to do at the pace that you're able to do it and not being attached to the outcome so you might have this plan and you're not able to do it and that's okay if you can do it. That also is okay. It's, it's more of just not necessarily being attached to the outcome and just being okay with whatever happens. In my book, if you're paying rents and you can buy food, you're winning, like you're winning. There's nothing else that's more important than like we have a place to live. You have some food. You have some people you hang out with occasionally, like that's all that's like. The rest of it is just...what’s that quote? I think “We're all born naked and the rest is drag.”

L: Yes!

R: It's all just displayed. That's all just other fluff.

L: Yes. So you have reorganized your sense of what it means to live a full life because you recognize what's most important to you and what it isn’t.

R: Necessity. Yeah.

L: Yeah. It's so cool. Do you have any funny stories from your health journey?

R: Ooooh. Yes.

*Laughter*

R: I was actually told this story on stage like three weeks ago because I thought it was hilarious at an English storytelling that happens every month. So it's about the day I went to a public hospital here in Buenos Aires because there is socialized health here. I think it's called socialized health. Where you pretty much go to a public hospital. They will attend to you and the care is actually really good. They'll do all the x rays and MRIs and all that stuff if they see fit and you don't pay anything. So I went to a public hospital the other day because my leg swelled up really big and I was like really scared about it. What was really funny was um, there's this very confusing system here of getting like tickets in order to see a doctor or pretty much to do anything in the country. I went and I got my ticket and then I'm waiting and then I realized that the machine is supposed to show the numbers isn't working. I go up to the counter and I'm like, Hey, so the machine isn't working and this is all happening in Spanish. So it's hilarious. And the guy is like, oh yeah, no, the machine isn't working. So what's happening is that the doctor's going to come out and call a specialty and if that's a specialty you need. So you just like walk on in into the door and whoever gets there first is the first person to get attended to and I felt really bad because there were other people in the waiting room. There was someone who was like very heavily pregnant. There was someone who was like probably had something happening because her hand was bleeding someone on crutches for the ends of ads, all that. It was really funny because the door was open and then like a bird comes flying in and the bird like flies out.

*Laughter*

R: And I was like, there's nobody think any of this is strange? And then finally they like call the specialty that I was with a friend of mine, he runs to the door and we get attended to and I feel I felt really bad because they were like, people that seem like much sicker than me.

L: It seems like the opposite, whoever's healthiest and can run to the door fastest will get care first.

*Laughter*

R: I thought that was absolutely hilarious.

L: Oh my gosh.

R: Well, there's so many other funny stories, but that was like the most recent.

L: Oh man, that is a bizarre. That is, that's like, it is like a wacky, almost like a wacky children's book where things upside down?

R: Oh no, it can totally be a children's book. And you would think that like or like an episode of Adventure Time or something and you're like, no, this can't be real.

L: Like wait a second. Yeah. What do you have now that you might not have had without your health challenges?

R: I have patience. I have insane listening skills and it's very easy for me to understand any person that takes the time to talk to me about anything that's going on in their lives because I think it's given me an understanding of just the fragility and the complexity of living in a human body. Because before I guess I was kind of short. Not necessarily. I've always been patient, but I was never the kind of person that was empathetic that truly felt like they understood what the other person was saying. But after this journey, well, this journey, that's I guess just beginning, but I don't really know because I'm not diagnosed. I started to listen to other people's stories and really try to understand what it would be like to live their life, live their life, and also just understand that like every single person that you see walking around is going through something and like you might be meeting them on the day they can walk or you might be meeting them on the day that they're actually saying, screw it. I'm going off my diet and then eat some bread. Even though I have celiac's disease and just understanding that like anybody can be anything, and just because you see them on a particular day doing a certain thing or not doing a certain thing, it doesn't mean that they're lying or that they are trying to be mean or they're trying to be rude or they're trying to like make your life worse in some way. It's just like life is hard and they're just trying to figure out how to get through it.

L: Oh, I like that. I feel like that was almost like a closing Dharma talk.

R: Oh yeah.

L: There's just so much wisdom in that in this whole conversation.

R: I have a lot where that came from.

L: That's why we need your podcasts and your writing and your art. So finish the sentence. This is not what I ordered...

R: But I'm not sending it back because sometimes they make mistakes in the kitchen.

*Laughter*

L: I love that. Sometimes they make mistakes in the kitchen.

R: It happens. I used to work in restaurants. That happens. You're like, wait, did I just send? Damnit!

*Laughter*

L: Yes. You have compassion for the folks in the kitchen.

R: Oh yeah, so much.

L: Ramon, thank you so much for joining me for this. This has been really fun and lovely to spend some time with you.

R: Thank you so much for having me. I'm really happy that I finally got a chance to talk to you and that we got to actually make a podcast together. It's so exciting.

L: Yay! Woohoo!