Episode 47: Acceptance Is Power
Guest: Sheryl Chan
Lauren: Thank you so much for joining me, Sheryl.
Sheryl: Thanks for having me.
L: I would love to hear a little about your health journey and kind of a summary of what you have experienced along the way.
S: So I first had a mild stroke at 14 when I was training under the sun and um, my friend and I kind of dragged ourselves to the nearest clinic and because my body was numb from like head to toe, like half my body was kind of just like, yeah, paralyzed.
L: Hmmm.
S: I couldn't move it. It's not so bad as a full blown stroke. It still was a bit scary. And um, the GP, um, referred me to the neurologist in the hospital who diagnosed me three months later with Antiphospholipid Syndrome, which is a blood clotting disorder. Yeah. So I didn't really take it seriously as, um, I was quite young and it doesn't hurt. It's more like a, like your blood doesn't clot properly kind of thing. So at 17, so three years later I had a, a full body, like... like clots in my whole body, like DVT everywhere. And one of it went to my lungs, so I nearly died. Yeah. I nearly...
L: Wow.
S: Yeah. Uhm, it kind of affected the rest of my life because it triggered the other autoimmune diseases like one by one. Uh, so at 20 I had lupus, and then epilepsy, Sjogren's syndrome, a heart valve prolapse, a heart rhythm disorder. So it kind of like got diagnosed year after year after year. So I like, people in their twenties that would be discovering stuff about themselves. For me it was discovering like a, a new diagnosis like every year.
L: Right. It wasn't like going on fun adventures, funnies.
S: No, no, yeah.
L: It was more learning about...Learning things about your body.
S: Yeah. Learning new things about yourself. Yeah.
L: Not that...Not in the same way. Yes.
S: Yeah. Yeah. So, um, yeah. So I hope that in my thirties it stops, but I mean I still get new symptoms some now and then, but hopefully no new diagnosis. Yeah.
L: Yes. And you have created something in, in the process. You've created something online and I'd love for you to talk a little bit about, it's called A Chronic Voice.
S: Yes, that's right. Um, so I started the blog up when I, the year I had tuberculosis, so I caught it off the streets like randomly, like a, it's still, um, quite prevalent in those parts of the world I think.
L: Mm. And you're in Singapore.
S: Yeah, that's right. So I mean Singapore's really clean, but you can still catch it off anyone really, like, all you need to do is someone just coughs on the street and then, you know, that cough lingers for a while. And yeah, me being immunocompromised, but if I just walk past I get sick.
L: Yeah. You're more vulnerable to it.
S: Yeah. Yeah. So no one around me had it except me, as usual. Uh, so the thing about tuberculosis is you need to the, uh, the treatment process is like, you take medications every day for nine months and you know, you need to go to the clinic to like swallow the pills in front of the nurses.
L: Oh wow.
S: Yeah. They want to like, make sure you swallow them. Cause, uh, the treatment. It's like a, they don't want it to become like an epidemic again and stuff like that. Yeah.
L: Mmhmm.
S: The treatment options are not plenty. So it was really depressing year for me because, uh, it interacted with my other medications, especially the steroids, so it kind of reduces the efficacy of steroids, so you've got to increase your steroid dose. So I increased that all the way to like my body weight and that usually drives me a bit. It affects me mentally, psychologically.
L: Absolutely.
S: Yeah. Yeah. So, uh, that was the, uh, I finally broke down and saw a psychologist and a psychiatrist. Up to that point, I'd never seen one. So for 10 years, I was say still coping with my illnesses on my own.
L: Mm.
S: Uh, without any like, psychiatric or psychological help. Yeah.
L: Mmhmm.
S: But that year was just bad and I, I couldn't work, I couldn't do anything and I decided to just start my blog up. Well, I was doing nothing at home, so it gave me something to do.
L: Yeah.
S: Yeah.
L: Yeah, and how interesting to, that you...I just want to say I can really relate to that period of darkness, that period of being in, it just sounds like you went through so much during that time and something in you wanted to create.
S: Yeah. More like I had, I need to like, to fill my time up.
L: Yeah.
S: And I really, I love to write, so I thought, okay, I might as well write about this. Right? So, yeah.
L: Yeah. And that's what's so cool about it is that you got to do it to fill your own time up, and in the meantime it has helped so many people.
S: Yeah. Although I would say the intentions were not purely altruistic.
*Laughter*
S: I mean, I did it cause I like to write. You know?
L: Yeah. I think that's a great reason to do it.
S: Well, I guess it wouldn't be sustainable if you don't enjoy it either.
L: It’s so true. And there has to be that, I think there has to be that joy element in order for it, for most things to be sustainable and following that joy can really impact the world, interestingly enough. You know, like when we're really enjoying what we do.
S: Yeah, that's right. So it kind of just grew organically and yeah, after a few years.
L: How has it been for you to be hosting this blog and essentially now, you know, featuring other people living with health challenges. What's that been like for you?
S: Um, it's been a learning process I’d say, so I started out, I mean, I work in the web development and advertising industry, so I kind of have the background about online, online stuff. So, so that part was okay for me. Like, uh, I'm familiar with digital media and stuff. But, I learned a lot about how do you say, like interacting with people online or the social aspects of it.
L: Mmhmm.
S: Um, yeah. And I made a lot of new friends online, so that was pretty cool.
L: That is pretty cool.
S: People from all over the world, people from all over the world that became friends because we read each other’s blogs and help each other share and you know, they understand when I'm in pain and stuff like that. So it was nice. Um, and I got to learn, it's through reading their blogs. Much about many other diseases as well.
L: Yeah.
S: So, yeah. So that was, that was interesting because I've learned, I think, not just through writing, but I've learned a lot just from reading people's blogs. Yeah.
L: Yeah, absolutely. I think that that's one of the unintended things that can happen as we connect across the world, is that we learn about each other’s conditions and, and you know, in some cases we will overlap, but like in, in many cases, most of the people that I'm meeting in our chronic illness community have stuff that I don't have.
S: Yeah, that’s right.
L: And so it's important to learn what their unique experiences are. And so you have highlighted, um, I think you do guest blogs and other features.
S: Yes, yeah.
L: And so when people visit your website is it?
S: A chronic voice dot com.
L: A chronic voice dot com.
S: Yeah.
L: That's what they find is it was kind of just lots of community.
S: Yeah. Yeah. So I, I host like a linkup every month a link up. A link up is like, you write...I have a five , five new writing prompts every month. So it'd be like October, there's five new prompts and then people write about that their lives with chronic illnesses on their blog. And then they post it to this that we all can access. And it's quite nice. It's a small community and using these five shared proms, you can kind of see how others are coping around the world with their illnesses.
L: Yeah.
S: So that's something I look forward to every month as well.
L: I love that. So anybody who has a blog can participate.
S: Yeah. I mean even if you don't have a blog, you could email me and I could probably post it to mine, you know.
L: Oh, cool. Wow.
S: Yeah. Yeah. Because there's always a way to post an article online really, like even on Medium or something and just share it on the page, and I find it really interesting because it's shared writing prompts. So say for example, well I can't remember what I had last month, but I had like words like researching and dating and stuff like that.
L: Mmhmm.
S: So, and the, it's just a word so you can interpret it however you like. Yes.
L: Yeah.
S: Yeah. So dating doesn't have to be about like a boy girl relationship kind of thing. It could be like a mom taking a teenage start out for a date night or something, you know, or date yourself. I don't know.
*Laughter*
L: But I like that.
S: Yeah.
L: Just however you like. Essentially you're saying it's a starting point and then however you, wherever it takes you.
S: That's right. That's right. So it's really interesting to see how our lives, no matter where we are overlapped and also are very different, yeah, yeah.
L: Yeah.
S: So, so it's, these words really help. Yeah. And so this is something like a little community activity I host every month. Yeah.
L: Mmm.
S: Uh, I have a few different linkups as well, and guest posts tend to be more about, ah, people's own life stories, uh, that they like to share on PTSD or other kind of illnesses that I don't know about. Yeah. So it's more about stories I'd say. Yeah.
L: Yeah. And I also want to mention that your lovely birds are in your, um, recording, which I actually think is so sweet because I heard…
S: Sorry that they're making, yeah, I'm sorry cause it's, it's still daytime here.
L: Yes. And it's nighttime where I am. So, yeah, I'm on the, I'm in like on the West coast of the United States.
S: Yeah.
L: So it’s 8:30 PM here.
S: Yeah.
L: What time is it there?
S: It's 11:30 AM. Yeah.
L: Yeah. And what I also thought was kind of neat is that you and I, I mean, it wasn't fun, but you and I both had to reschedule the interview at least once each, just because, you know, we're living with health challenges and so in the, that midst of it, so we're kind of emailing each other and saying, Oh, actually today is not a good day for this.
S: Yeah. But I think that's pretty cool too. I mean, yeah.
L: Yeah!
S: Like, like, I mean, if I canceled on a work meeting or something, yeah. People would be so pissed off, you know? But yeah, it's cool. It's like, Oh, no worries. I understand.
L: Yeah.
S: That's cool.
L: Yeah, it is such a relief and I think, you know, it normalizes being able to do that. And I think it's like you and I both know that we get it, the desire and the intention is there. Cause we both want to do this interview. It's just the reality is, um, even if the spirit wants to do the interview, the body is saying slow down.
S: Yeah, that's right. It's a relief to, you know, just, just, just say I can't do this and someone just gets it. Yeah.
L: Yeah.
S: Without having to explain like, you know, on and on and on yet. So, yeah.
L: And I think this is the power of taking our health challenges and being open about them. And I always like to say, you don't have to be open about them. It's not right or wrong. One of the benefits of being open about our health challenges is that it makes us normalize it. And it also gives other people permission to have health challenges too. And I think it, it helps people to feel more comfortable.
S: That's right. Um, I think, yeah, to raise awareness, you really have to be first comfortable with your own body and your own illnesses. Uh…
L: Hmm.
S: In a sense like...For example. I go out like, I have a lot of bruises on my body, for example, because I have a blood clotting disorder.
L: Mmhmm.
S: So if I go for like a, like a foot massage or something or a nail, like a pedicure and then people would be like, wow you have so many bruises. Like I almost look abused. Right. So I don't take it seriously. I just, yeah. I use it as an opportunity to teach them something about my illness.
L: Mmhmm.
S: Like I, I crack jokes about it. I'm like, yeah, I have this clotting this order and yeah, I can't eat certain foods. Okay. Like, I kind of eat a lot of vegetables, but I can eat all the junk food I want.
*Laughter*
S: Something like that, you know, and that makes them feel comfortable and they ask you questions and stuff like that. So, yeah. So I kind of use it as a...I’m not uncomfortable with my bruises that way. I'm not uncomfortable with sharing about my illnesses. This is all personal, right? It's individual.
L: Yeah. Yes.
S: I've reached a stage where I think I can use it for good. So yeah, if someone is interested, right, tell them more about it.
L: That's pretty cool. And I think for me, in my journey it has also been true that the more comfortable I get or really another way of saying it is, the more I acknowledge the reality and accept that, you know, this is what's going on, including accepting feelings about it. The more I'm able to share with other people and then, and then I'm giving them access to a whole new dimension of my life.
S: Yeah. It’s kind of like reclaiming your power. I'd say.
L: Mmhmm.
S: When it doesn't,it doesn’t affect you so much emotionally anymore. Cannot, yeah. How do you say….It's not in charge anymore.
L: Yes.
S: Right?
L: I think that's a great way of looking at it. Well, especially because I think so many of us can relate to the period just after diagnosis and anything from a few months to a few years after diagnosis, feeling the fear and the surprise or the, just the stigma of having a health condition and how we can, it can feel bigger than us, you know, it can feel like, yeah, more than who we are. And then there's this transformation that can happen when we start to build a relationship with it. You know, like…
S: Yeah.
L: We're building a relationship with ourselves and with our understanding of it and realizing it's like, oh my gosh, you are infinite. Your health challenges is like one star in the sky, but you're the whole galaxy.
*Laughter*
S: Yeah. Yes, yes. It's an ongoing process. So I mean, there's still days that I get down and that’s fine. Yeah.
L: Yeah.
S: It just rises and falls and that’s fine. Yeah.
L: Well I love how you say that with such, you seem so casual as you say it. It's just such a demonstration of your own familiarity with it and your acceptance of it. And I think the thing about acceptance is, sometimes people will tell me like, well, I'm afraid that if I accept this, that it means that I'm giving up.
S: No, I think that's the biggest misconception people have about acceptance. Yeah. I think acceptance is power. It, it just means that, yeah, you own it and um, you become the boss, you take charge of it. You know. Yeah.
L: Uh, that's such a great turnaround.”
S: Yeah. In the sense that, for example, say people use to insult you about your illness and say you just accept it. What they say has no power over you anymore. You know what I mean? It's just, it doesn't matter anymore. Yeah. And uh, you can then use that energy to do something good for yourself instead.
L: Yeah. Because it does take energy to be with and understandably, because we have a development, everyone has their own development process. Yeah. I think the, the closer we get to our own truth of our power, like connecting with our hearts, connecting with our spirits, the less power that things that aren't true to us, things that aren't really true in our souls, the less power those things hold.
S: Yeah. I mean, I'd say it took a long time to get here, like maybe 10, 10 years or so.
L: Yeah.
S: Because in my youth there was just so stubborn and I'd say, I'm not going to accept it. I'm just going to fight it and you know, just live my life. Pain breaks you. There’s no fighting it. There's no fighting it to the death. It wins.
L: Right? Well it's like, yeah, the type of fight that it is, is different from the type of effort. It's like there's a transformation of where the attention on change goes. Like the change piece. And I think that's one of the hardest parts about this is trying to differentiate between what do I need to be putting my effort into…
S: That's right. That's right.
L: And what, what is it safe or I don't even know if the word safe is right, but like…
S: What matters, I’d say.
L: What matters? What matters and how do I hold the things that I can't control and how do I hold the things that I can control?
S: Well, I still struggle with that a lot. Oh my God. It's like a huge struggle, I'd say. Yeah.
L: What's it like for you?
S: I'd say I'd be a very different person if I wasn't.
L: Really?
S: Yeah. I, I tend to like, I really push it, you know. I find it hard to, it's for me to say, you know, you should accept it. I don’t think I’d be that kind of person if I wasn't sick.
L: Mmm.
S: Yeah. Yeah. Because I tend to like, push it until I get what I want.
L: Mmhmm.
S: Yep. Yeah, yeah. That's the kind of person I used to be. But now I’ve just learned that sometimes that's not possible.
L: Yeah. Oh my gosh, that's such a revelation because often there are things in life that, you know, if we work hard enough, we get results. We work hard enough, we get results.
S: Yeah.
L: But with that body, it's a whole other situation.
S: Yeah.
L: The body is this teacher, you know, it's like the body is teaching us that that's not always how it works.
S: Yeah.
L: And it's an unfortunate experience…
S: Yes.
L: And I mean, not for nothing. It's fun.
S: Yeah.
L: But it is something that is, I do see it as a teacher. It's not possible to control everything and so there's a new type of wisdom that comes from that.
S: Yeah. And even though I'm sick, I, I'd say that I've learned to, um, respect my body a lot more.
L: Hmm.
S: Because it's not, it's not the enemy. I think it tries really hard to help us or protect us. Sometimes it just gets confused, but I think it's still quite amazing what goes on inside of us and stuff and how much we don't know about it.
L: Yeah.
S: Yeah. Yeah. So I still think our bodies are still pretty amazing.
L: Yeah. I can hear that you have a sense of wonder.
S: Yeah.
L: For what is happening in the body. The different processes. The responses.
S: Yeah. So even if I'm sick, I'm still curious about how, like what goes on to caus this illness. It's almost like, well, sometimes I can kind of like separate myself from my illness. Then view it from almost as if I'm a, from an outsider's point of view. So it's like an investigation and it's quite fascinating. Yeah.
L: Yes. Yeah. And that's...The whole concept of looking at our bodies from an outsider's point of view may sound very foreign to some people, but it also may sound very familiar because, um, it's, it sort of brings up the question of like, am I my body or not? It's hard to know like, what is it? Am I my spirit or am I like how much of me is my body because we don't have much control over our bodies. It’s kind of, a big life question.
S: Yeah. So it's kind of just an observation, I'd say.
L: Mmhmm.
S: Yeah. Observation of yourself. Your body. Yeah.
L: Yeah. And I think observing it, it's the weirdest thing. Like, one of the things that I've said before that has surprised me is that when I was diagnosed, I was shocked because it of course didn't think I had any kind of illness. Like, you know…
S: Yeah.
L: Even though I had symptoms, I was like, well, I, I don't identify as, you know, somebody who has an illness.
S: Sick. Yeah.
L: Yeah. I don't identify as sick. But then they showed me these brain and spine MRIs and they showed me these lesions and it struck me that even though I am the one living with the body that has the lesions, I was, I felt like I was the last to know because the doctor's got to look at it first. And so to see myself that way was just so surprising and painful.
S: It felt painful.
L: Yeah, but there was a way that I almost felt like left out of the process.
S: Yeah.
L: Like...Why didn't I know about this? You know?
S: Yeah. Well, I think you kind of, if you live with it you’re attached to it, you're, you're, it's a slow process. It's not like it happened overnight, so you kind of slowly get used to it.
L: Mm.
S: Yeah. This feeling and sensation in your body. It's a day by day thing.
L: Mmhmm.
S: Yeah. And sometimes you...you're not even aware because you’ve grown so familiar with it.
L: Yeah. Or just the invisible, like you were mentioning that your blood clotting function didn't hurt.
S: Yeah.
L: And so for you that it wasn't like an immediate sensation that you dealt with.
S: Yeah.
L: But it was this huge shift in your life at age 14 when you had this stroke.
S: Yeah. The stroke wasn’t the problem, that was the full body clotting, like a DVTs everywhere. That was, yeah. That was dangerous.
L: And what is it? What does DVT stand for?
S: Deep, deep vein thrombosis.
L: So DVTs. Yeah.
S: So like, like you know how they asked you to walk around on planes and stuff?
L: Yes.
S: You get a blood clot. Yeah. So that's like, um, I had it, yeah. Everywhere on my legs and yeah. And that's not just one clot, it's like multiple. So yeah, that was quite bad. Yeah.
L: Yeah. And it wasn't something, you were so young when it happened, so it, it seems like it's been a big part of your development. How you have learned about yourself as a person and you mentioned over the past years moving from a place of fighting it to accepting it and feeling power in your own life, which I think is so important for people to hear because the idea that acceptance can bring about a sense of, of power is really cool.
S: Yeah. I think that's, I think that's the biggest, um, the truth about acceptance really. Yeah.
L: Yeah. And we know you've mentioned that you have learned some life lessons along the way and I would love to hear what some of your big learnings have been.
S: So life lessons, um, I think you learn many life lessons. I don't think it's one big revelation, but many little ones along the way. Even to this day, I still get lessons, epiphanies by the day, by the week, you know, um, I'm still learning.
L: Yes.
S: Yeah. Yeah. Or some lessons you forget and then they resurface.
L: It’s so true.
S: And they get translated into a new concept, if that makes sense.
L: Yeah, it does.
S: In a different situation. Yeah. In a different situation. Pain is always in your face. It's never far away, you know, so it's not something you get used to. So the life lessons you learned, it's a, it's a, it's an ongoing process.
L: Yeah.
S: Yeah. Yeah.
L: It is a, it's a little bit like a relationship I imagine because I say I imagine because I don't experience chronic pain.
S: Oh, okay. You don't experience chronic pain?
L: No, I don't.
S: Okay. Okay. So how does it manifest for you?
L: The multiple sclerosis?
S: Yeah.
L: So for me, I have a type of MS called relapsing remitting MS. So my, I, I'm not in a relapse right now, so I guess that's good. Right? But then I always wonder because there's still symptoms, so, um, it's always trying to figure out what is my baseline and all of that.
S: Yeah.
L: But my main symptoms are fatigue, dizziness, and brain fog.
S: Yeah. Those are no fun either.
L: Yeah. So, and in that way, I think that's where I can relate to it being like a, like a relationship. It's like you're getting to know each symptom like a new, almost like meeting a new friend. What would you call it?
S: An unwanted guest.
L: Yeah. Okay, that's fair. So for you it feels like, okay, like especially with pain, you're saying you don't get used to it. It is an unwanted guest and yet over time you're kind of learning about it.
S: Yeah. It's kind of like an unwanted guest. Uh, brain fog is pretty bad to me. Especially when I have it after like a like a seizure.
L: Yeah.
S: So it lasts for like a day or more, a week.
L: Hmm.
S: It just feels terrible when you, when you can’t access your brain like, you know, it's there but you can't get there.
L: Right.
S: It makes you feel, makes you feel so stupid. Oh, it's not a nice feeling.
L: Really incredibly frustrating. And um, it can, I think it can also be scary.
S: Yeah. It takes a hit on your ego. I mean, I mean on your identity because like who are you anymore? You can't even process basic stuff. Yeah.
L: I think it brings up questions for me at least about, again, I know I talked about, am I my body? The other question that comes up is, am I my memory? Am I in my ability to be, you know, intelligent or to have to know things because when those things are taken away. Who am I? And I, that's actually a really important question to me because I do believe that I am something even bigger than that. You know, and that's, and I've learned that because of what has been taken away. But like I remember one time I was spending time with a friend, actually it was Tara Cameron who was a guest in season one and she and I were spending time together and I was, it was like hot out that day, which exacerbated my symptoms. I was tired, I had tremendous brain fog and I just said to her at one point, I am so sorry that I'm not fun to be around. And she said to me, I will never forget this because it...I, I feel like I can't unlearn this lesson. She said, Lauren, I'm not here for you to entertain me.
S: Yeah.
L: I just want to be around you.
S: Aw.
L: It was so special because, and she has chronic illness as well. She understood and we know it's like we know one another's essence and so there's no requirement to perform, you know?
S: Yeah. Yeah. That's right. That's right. Um, I totally get it.
L: Yeah.
S: Yeah.
L: And I, I want to say that I also really get what you mean when you say, well, wait a second. I, this is so frustrating. I can't access this information. I can't think the way I'm used to who am I? And it really...I honestly think it can create some panic.
S: Yeah, yeah. Cause I think I'm the kind of person that it takes pride in intelligence like...for me to take a blow. And I'm not saying I'm super smart or anything, but, well for me to feel stupid really depresses me.
L: Hmm. Yeah.
S: Yeah.
L: Well it is very much, I think a cultural concept of, you know, how we demonstrate being worthy and for some, like I grew up in a, like a, one of the branches of my family was very intelligent. Oh, focused. And so it was like a competitive thing and you were, you were rewarded if you demonstrated, you know, good marks. And so there, yeah, I can relate to that. There's this part of me feels like, Oh Hey, I have to demonstrate myself now.
S: Well, I'd say it's more like I'm the oldest child and I was always held to very strict standard academically. I've always been more of an academic person as well.
L: Yeah.
S: Yeah.
L: Yeah. So that's part of like your natural sense as well as that you and your family had...
S: Yeah. I enjoy it.
L: You're the oldest child and yeah. So there's more, there's a little bit more pressure. Yeah.
S: Yeah. I wouldn't say I'm street smart or anything like that. I mean, I'm not stupid in that sense, but typically I enjoy academics. Yeah.
L: Mmm. So, yeah. And that's especially challenging when it's something that's essential to your joy or what you, what you love in the world.
S: Yeah. When you take pride in, in yourself in a sense?
L: Yes. Yeah.
S: Or like builds your identity and absolutely.
L: Yeah. And how we identify is, I think part of the, one of the biggest challenges of managing having health challenges is that who we identify as, it can often be, we can often bump up against that with the challenges that show up with our bodies.
S: So when I see like healthy people, for example, that I don't know, they, they say stuff like, um, they identify themselves with something or say they'll never do something and I'm just rolling my eyes because I'm saying if you get sick, you, know, this is not true.
L: Right. Well, I know that's, yeah. It's like we're so aware. I think so many of us are so aware of the finite nature of things.
S: Yes. Yeah.
L: You know, like we don't necessarily count on having access to certain abilities because we know they can be taken away.
S: You don't always have a choice. And I think that's what they, when you're, when you're not, when you're healthy, you can sometimes think you’re Immortal.
L: Mmhmm.
S: Yeah. Kind of that kind of feeling like, you know, you just have to work hard enough. You just have to believe in yourself enough. It doesn't work that way.
L: Right. And it's, it's very bittersweet. Cause I think in some ways it's very, it's an innocent way of being, especially as a young person. Often we think we're invincible, although not everyone, because some of us grew up with health conditions, but for many, you know, there's this developmental piece around how we, you just feel like everything's possible. And that's a wonderful feeling. It's just when it is dependent on a body, it can actually turn around and feel quite limiting. And, once we start to have health challenges, which pretty much everyone has to deal with at some point in life, some way more than others. And I don't want to say, Oh, we all have the same amount. We certainly don't.
S: Yeah.
L: But to be able to, what I mean when I say it's bittersweet is there's a sadness of losing the innocence of feeling like I can do anything. You know?
S: Yeah. In a sense. I, right. I kinda like I wrote in one article, like I'd rather be innocent than have to learn these life lessons.
L: Yeah. And so there's that. And then the other side of this, the other end of the spectrum is while we also get access to what I think is pretty important information about the fact that that life is precious and not to just take everything for granted, but to actually really preserve what we do have, to be grateful for what we do have and to use our energy to do what we truly love versus just say, oh well I'll do it later cause I'll be able to, or you know, I'll see, maybe I'll do that thing that I care about but I'm going to focus on something else right now. But we really can't afford to do that when we've got limited, um, spoons of energy or we've got limited pain tolerance because we're dealing with the experience of having pain in our bodies.
S: That's right. Yeah.
L: And you know, those moments of relief can actually feel even more sacred. Like, I don't know, like when I know when I've gone through a harder period and then I go outside for the first time in awhile. It's like I feel the air on my skin and I hear the sound of the birds and I see the sun and you know.
S: I get sensory overload.
L: Yeah.
S: Yeah. I like, I can smell and see, feel everything.
L: Yes.
S: Yeah. It's a bit of a strange sensation.
L: Absolutely.
S: Yeah.
L: By the way. So one of the things we wanted to ask you about is that your love of travel and it's such an important topic because so many of us with health challenges struggle with travel. And I'd love to hear about your experience with travel.
S: It's actually one of my most passionate hobbies and topics. Um, like I first started blogging about traveling and not health. And my dream was to be like one of those, um, travel writers that really explores culture in depth and not just like, I don't really like to travel like, like in the whirlwind kind of format.
L: Mmm.
S: Or, or to go, just to relax and enjoy. I mean, I do enjoy that. I'm really like digging into a culture. Not just….learning about it. And my dream was to like, you know, live in a really like far out country that no one knows about and just immerse myself. Write a book, kind of travel literature.
L: Yes.
S: Yeah. So that was my dream and I can’t do that, I mean, there are no, no doctors, there's no, no emergency departments and stuff. So I used to read a lot of [inaudible], he’s a travel literature writer. Travel to say China or like, uh, I think it was Damascus and stuff like this for years and just, you know, immerse themselves and then write about it. And for me, I really enjoy that kind of immersion, um, because I don't think you can learn about a culture in three days.
L: Yeah.
S: Yeah. Or even, or even a few years, I liked that kind of traveling where it's really like digging into it. Yeah.
L: Yeah. You really that, no, that makes so much sense. Taking time and space to immerse yourself.
S: Yeah. So that was, like it's a dream job. Yeah. That was my dream. I like writing, but if you gave me a choice, I prefer to be a travel writing.
L: Yeah.
S: Yeah, yeah. Now I'm a health and chronic illness writer.
L: So how long do you stay in touch with that joy that travel brings you when you have the health and physical conditions that kind of get in the way?
S: I have no joy.
L: Oh!
S: It's more of a financial issue and this year I've been in the hospital like a lot, so I couldn't really consider, I've been like almost every month i’ve been in hospitals, so yeah. So I couldn't even consider or think about it but financially I need to start. Yeah. I need to really look for more work and more money at the moment. So it's not, so right now travel is more like a luxury. Yeah.
L: Well, okay. Now then I'm going to ask you a question, which is what would be your dream assignment? Because, If you, you know, if somebody is to the podcast right now and would love to work with you, what would be the dream that you would want in terms of travel?
S: Ah, I'd love to go to Iran. Uh, I think it's an amazing country.
L: Mmmm.
S: It's not just about the current Muslim culture, but it has such a rich culture of like different religions and stuff like that. And I think the architecture is amazing. Um, yeah, so it's the history and like the culture is just really fascinating to me and I’d love to go there and just learn more about it and yeah, there's anyone who wants to do like, accessible, accessible, um, travel to like, more dangerous places, you know, you can call me.
*Laughter*
L: Alright. Awesome.
S: I mean, yeah. Accessible travel for people that want to go to more unusual places. Yeah, that's, that would be my thing I think.
L: That's great. I love that you just put that out there because that's part of what I was curious about is like, you know, it's like we hear your dream. We hear that limitations, but also what's the kind of place where you have some ability to connect and engage with that. And I do get what you're saying, travel very much is a financial endeavor too. So that piece is a really good point.
S: So, travel for me is not just enjoyment. It's for me, it's a learning experience.
L: Yeah.
S: Yeah. So it's not, yeah. You learn about life out there just from interacting with different people. And it helps it, I think every piece of knowledge you learn, it helps your life. Like, like seeing how other people live and seeing how big the world is, seeing how beautiful nature is. And it just, it shows you your problems are not that bad. I mean, it's still there. It's still bad, but the world is more beautiful than that.
L: Mmmm. It expands your perspective. Yeah.
S: Yeah, that's right. Yeah. So that's what I love about traveling. It just blows your mind. That really blows your mind. Yeah.
L: Yeah. That’s so cool.
S: It gives you perspective. Yeah.
L: And you have, you do have a travel blog, right?
S: Yeah. But I've stopped writing in it for awhile. Yeah, so right...because right now I focus all my energy on the chronic illness blog. Yeah. So I tried to set up another blog related to the chronic illness called sick lessons dot com.
L: Sick lessons dot com. Cool.
S: Yeah, so it's more like life lessons from illness. So things that people have learned about because of the illnesses. It's like I had no energy to even run two blocks. Yeah. That's the kind of thing I'm also interested in like, lessons you learned from things.
L: Yeah, absolutely. Then what we're going to do, if it's okay with you. I want to put the link to, because I did get to check out your travel blog. It's pretty cool. So can we put the link to that in our show notes as well? Is the lessons dot com, your travel blog, and a chronic voice?
S: Yeah, the travel blog is journey jot dot com. So it's called journey jot because I would always travel with a black notebook, and I would write down my notes in it every night.
L: Nice.
S: No matter how tired. No matter how tired I was, because when you wake up, you forget. I write about it after that. Yeah.
L: So journey jot dot com okay. We'll put it all in the show notes and people should be able to visit and see your passion.
S: Yeah.
L: All of that.
S: Yeah. So my favorite.
L: Yeah. Oh, go ahead.
S: My favorite travels, my favorite travels are not in it, uh, cause they were way earlier.
L: Okay.
S: Yeah. It has some, the kind of writing there if you see it's very different from my health writing style.
L: Mmm.
S: Yeah. And it's the kind of writing I like to do. Yeah.
L: Oh, that's so cool.
S: Yeah.
L: So yeah, at the end of every episode, I ask a few questions. So I'm going to ask you these three questions.
S: Sure. Yeah.
L: Take your time. You can think about them and you don't have to make them short. You can talk as much as you want. So the first question is, what does it mean to you to live a fulfilling life? And has your definition of fulfillment been impacted by your health journey?
S: Yeah. That’s a hard one. I think the standard answer from society now is I just want to be happy but that's not something I believe in.Um, I look for, for meaning in a sense that I don't really have a purpose in life. It's more like, it's more like I, I, I said in the, in a different podcast, it's more of, um, asking life what it demands from me right now.
L: Mmm.
S: So the answer from life is always that it demands the best out of you. It's more of the other way round in a sense that it's not what I want, it's what life wants for me.
L: Wow.
S: And life always wants the best for me. Does that make any sense?
L: It totally makes sense. And what I love is that I really haven't heard it that way before, so I'm still taking it in and I really enjoy just hearing you talk about it because it's so, it's, you know, you really thought about this, I can see that you really thought about it.
S: So in a sense it works both ways because it works out for you in the end.
L: Yeah.
S: Yes. Yeah. So I think it's a more peaceful way to approach it as well.
L: Yeah.
S: Yeah.
L: Thank you for that. So my next question is, do you have any funny stories from your health journey?
S: Funny. You're constantly like morbid or like, yeah.
L: That counts.
S: Funny stories. I'm not really sure. I don't really, yeah, no.
L: That's okay.
S: Nothing's really funny.
L: I know. And you know what, that's the thing about this is like it isn't, you know, it, it isn't funny like health challenges really not funny. The, the challenges themselves are not funny.
S: Yeah.
L: And sometimes there are moments of joy or humor in the midst of them, so really.
S: Yeah. I think it's more of you making your own humor, but it was never funny.
L: Exactly. And I think that's a really good way to put it. Like is there, is there a moment of humor that you have created over the years that you or you and a friend or you and your family?
S: Well, it's more like little jokes. I like to crack about pain or illness. And I like people that actually crack morbid jokes with me about them.
*Laughter*
S: It helps me to cope.
L: Yeah. Do you remember any?
S: No. It's like, like little bits that come up in conversation, you know, just, just when they visit me or like, yeah. It just helps me to feel like I'm like, uh, like I got this, you know, like it's not so bad.
L: Yes. Yeah, absolutely. So really what you're saying is it's like an attitude of bringing the joy and bringing the humor and because that's what's helping you survive the really hard stuff.
S: Yeah. It's kind of like saying “eff you” to the illness. It's just like, yeah. It's funny.
L: Yeah. It's like I said before, like you're like the illness is not in charge.
S: Yeah.
L: It's so true. I feel like when I'm making a joke, absolutely, the illness isn’t in charge.
S: That's right. You're like, you get a laugh or, you get some joy out of it from your own creation.
L: Yes, exactly.
S: Yeah, that's right. Yeah.
L: Yeah. So, and the last question is, what do you have now that you might not have had without your chronic illnesses.
S: Well, I would say, I wouldn't have gotten involved in the blogging community at all.
L: Mmm.
S: Or meet like are the people with illnesses or maybe it's more of other people. I learned like I don't have many friends now, and I don't have the energy and I have no time to, no, not no time, no energy to actually maintain or meet new people so much.
L: Mmm.
S: The people that hang out with me hang out because they want to.
L: Mmm.
S: So I get the best of humanity. Um, yeah. So the people that come to me, uh, maybe at the top, well, teir of humanity.
L: I like that.
S: The kind that are more empathetic, kind that are more kind. And you don't get the bad, bad ones so much. Yeah. Because they can't deal with it.
L: Yeah. That's awesome.
S: It's painful. It's painful. I mean, I've had lots of relationships or dates just dumped me or ghost me because of this, it's a really painful lesson, but at the end of the day, you only get the best.
L: I really appreciate that because it does speak to, so many people can relate to the hard part of that, which is rejection or people revealing that they're not, that they don't have the best to offer and on the other side of that pain is the beauty of really being able to spend time with the people who’s energy is the energy you want to be around.
S: Yeah. I would say the most courageous people.
L: Yes. Yeah.
S: It takes, it takes courage and empathy. Yeah. It’s good in that sense. It’s not pleasant sometimes, the process. Yeah.
L: Yes. That's a great way of putting it. So then the last thing that I'll say is at the very end, you know, the podcast is called, This Is Not What I Ordered. And so at the end I ask people to like fill in the blank as though they're writing a sentence. So you can think about this one as long as you want, which is, um, finish the sentence. This is not what I ordered….
S: But I'm going to shove it down my throat and try to enjoy it anyway.
*Laughter*
L: That's great.
S: Yeah, I think, I think you can acquire new tastes. Yeah. So...
L: Yeah. You have a great sense of humor. Thanks so much for joining me, Sheryl. It was a pleasure to spend this time with you.
S: Thank you. I'm glad the birds have stopped, so I'm glad they didn't make too much noise in the end.
L: Yeah. Just enough to help us enjoy that they're there. Yeah.
S: A bit of nature. Yeah. Little bit of nature.
*Laughter*
S: All right. Thank you so much Lauren.