Purpose Project

S1E15: Living in the Present with Kylie Sullivan

• Leslie Pagel • Season 1 • Episode 15

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In this episode of Purpose Project, host Leslie Pagel welcomes Kylie Sullivan and her service dog, Finnegan on the show. Kylie shares her profound journey of discovering her life's purpose despite battling Ehlers Danlos Syndrome, a connective tissue disorder. Kylie narrates how her diagnosis at 16 upended her dreams of a dance career but eventually led her to teach dance and advocate for chronic illness awareness. Through personal stories, she discusses navigating depression, finding gratitude, and balancing the highs and lows of life. Kylie's inspiring story offers insights into the power of resilience, the importance of living in the present moment, and advocating for oneself.

00:00 Introduction to Purpose Project

00:24 Meet Kylie Sullivan

00:55 Kylie's Health Journey

02:40 Understanding Ehlers Danlos Syndrome

06:00 Discovering Purpose 

18:11 Kylie's Daily Routine and Teaching

25:30 Advocacy and Speaking Up

33:29 Final Thoughts and Reflections

Follow Ky’s Happy Place on Instagram: https://www.instagram.com/kyshappyplace/

Purpose Project is a research study on the topic of life's purpose. You can follow along in the making of Purpose Project:
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Welcome to Purpose Project. My name is Leslie Pagel. Thank you for being here on the show today. We have a very special guest. Her name is Kylie Sullivan. Kylie shares with us her journey of discovering her life's purpose. It's a story that left me speechless. Let's take a listen.

Leslie:

Kylie, thank you so much for being here on Purpose Project. I have been looking forward to this conversation for a long time now. Me too. I'm so happy to be here with you. Thank you. Before we dive into the topic of life's purpose, tell us a little bit about yourself. My name's

Kylie:

Kylie. I love to read. I love coffee. I love my dog Finnegan. Yes, my service dog. Um, when I was, uh, younger, I started to have like mild symptoms of a lot of things. And, uh, we thought it was fine. I got injured a lot and everyone was like, Oh, she's just clumsy. And then when I was 16, I, and I was a dancer all my life too, that was all I knew. And when I was 16 I got really sick and was in the hospital for over 5 months. And, uh, went from dancing over 20 hours a week to not being able to dance at all. It was a really hard adjustment. Um, and finally got diagnosed with something called Ehlers Danlos Syndrome. And, uh, At the moment, thought it just like twisted my life upside down because ever since I was little I had a dream of uh, going to college for dance and studying dance or just seeing where life took me in the dance community and when I got sick I had to at first I was like, oh I'll make it work, but then I went through so much medical wise that I finally realized like it's not gonna work and that's okay and I found my purpose and I had to Had to live through a lot to realize that my purpose can change Okay, now I teach dance. So I am still in the dance community and it's like the best feeling ever. I love

Leslie:

that I love that you were able to Come back to it. Me too. Yeah Could you? Tell the audience a little bit about What the disease is and how it impacts your body?

Kylie:

Yeah, so Ehlers Danlos syndrome is a connective tissue disorder and there are 13 types There are more common types and more specific severe and rare types and at first we thought I had the just very mild case and it turned to be a more severe case but it, um, it affects the collagen so in a healthy person's body Collagen keeps everything strong. It's the glue in your body. It keeps your joints in place and Supports your organs and your blood vessels and people with Ehlers Danlos syndrome. They have faulty collagen. So Like healthy people Their body is like jeans. They're really sturdy and people with Ehlers Danlos syndrome Their body is more of like spandex. So it stretches more and is not as Um, structured correctly. So I have, because of Ehlers Danlos syndrome, I have something called gastroparesis. So my stomach is paralyzed. Um, it affects my lungs. I have, uh, heart problems and I have dysautonomia, which is the dysfunction of the autonomic nervous system. So it affects, um, Everything that's like should be on an automatic for like breathing and blood pressure and heart rate. Um, my joints dislocate on a daily basis. So I have to be really careful of how I move and how I get even just getting ready in the morning. Like I can injure myself so easily and um, I used to spend so much time in the hospital, especially when we didn't know what was going on. But now that I have like everything that I can help take care of myself and keep my body as functioning as possible at home, I've been able to stay out of the emergency room and hospitals more. So it's been really nice, but it's, I've had countless procedures, surgeries, tests, it affects

Leslie:

everything. Wow, so you were 16 when

Kylie:

When it got really bad.

Leslie:

When it got really bad. Yeah, and I imagine it sounds like it just turned your world upside down. It did. Yeah,

Kylie:

I was a very, I was very depressed, I was very uh, depressed. angry all the time and grieving all the time and Because of all the medical things I've had to go through I do have medical PTSD from doctors not believing me and like they see a teen girl who's hurting and They go through tests and when they don't find anything on the first like couple tries They just like dependent on anxiety and she's just depressed and it was so hard to believe myself that I, there was actually something physically going on.

Leslie:

Wow. Thank you so much for sharing that and for being here and talking about the process and discovering your purpose. You said earlier that It's been a little bit of a journey through this to discover your purpose. What, what is your purpose? How do you see it?

Kylie:

Uh, you know, I feel like it's always changing, which It's gotta get comfy. Is that better? Good point. Hey, that's gross. Don't do that on camera. Then again, okay. You're so rude. Um, I feel like I have multiple purposes too. Um, a big one is educating people on not only Ehlers Danlos Syndrome and the illnesses that I live with, but all chronic illnesses and disabilities and educating doctors and advocating for myself because There's a lot of doctors who either don't believe them or just don't have a good bedside manner. So, I feel like a huge purpose in my life is to educate people and bring awareness. And, um, a second purpose I feel very strongly about is teaching dance and being there for my students and watching them grow. So, I love being able to be someone in their life that they see disability is not some taboo subject, but something that is normal and being in a wheelchair isn't that scary.

Leslie:

And we are in your family's dance studio. Yeah. Yes, Impulse Dance Academy. Yes. Thanks for having us here. You're so welcome. It's great to be on site. Yes, it's so

Kylie:

nice.

Leslie:

So you, you mentioned earlier that it was, journey to discover your purpose. Were there any defining moments in that journey?

Kylie:

There really wasn't. I've, I was so numb for so long, before I got my depression really treated that I, I couldn't find my purpose. It wasn't there yet. It was there, but I just couldn't find it yet. And, um, yeah. Once I was treated for my depression, everything started to, I started to see life more clearly and it was a very gradual process of finding my purpose and realizing

Leslie:

why I'm here. Yeah. Could you tell us a little bit about that process? It sounds like getting treated for depression was the first step. Yeah. But in coming out of that, were there certain things that you did?

Kylie:

I, um, I started something called Ky's Happy Place. It's, uh, it's an Instagram account that I have and it's kind of like a gratitude journal, just in a different, um, a different way and I started posting a positive day and kind of talking about my day and even if it was just like waking up and that kind of started the process of I I had to stop looking in the past and I even had to stop looking in the future because my life with chronic illness and disability is so unpredictable and I was focusing so much on the future that I wasn't able to look At the present. So, teaching myself how to be in the present was a lot easier to find my purpose then when rather than being stuck in the future.

Leslie:

It sounds like Ky's happy place of sharing moments of gratitude helped with that.

Kylie:

It did. Yeah, at first it did turn into something like toxic positivity where I only saw the positive and I wouldn't let myself see the negative and finally Going through so much therapy, which I'm so thankful for my therapist um with how much she's helped me through this is I It's amazing to be positive. It's so good to be happy. It feels great Also, I need to feel negative sometimes. I need to have those sad days and be in my thoughts and grieve to be able to be happy. And that was, it's a big balance to try to find the right way to not be stuck in the negative, but also not be stuck in the positive. It's a really fine balance.

Leslie:

Right. Are there any tips that you have for,

Kylie:

for

Leslie:

our audience?

Kylie:

I, I found that I like to give myself sad days where if I'm just feeling caught up in life and maybe I'm, I've been so social that I just need to recharge, I will give myself a sad day. And I have a little book nook in my closet, so I hide my closet. I turn my phones off. I might read, I might cry, I might just like sit and stare at the ceiling and that's actually helped so much to just let myself focus on the negative just for a day. And then I'm able to be like, okay, I got it all out. I can, can start seeing my family now and turn my phone on and text my best friends. And it, it was really helpful for me to give myself that moment to just break down.

Leslie:

And it sounds like it's time bound too, where it's like, this is going to be my time. I'm going to do this and then I'm going to come out of it. Yes. Yes. Yes. And gratitude being, being in gratitude helps as well. It does. Wonderful. Any, any other tips? I, cause I suspect that, uh, there are people that also struggled to be in the present. There is. And you've learned it in a way that is unique for you. And there's things that, that others can learn from that too.

Kylie:

I, sometimes I will write down. the past, everything I've been through. And it's usually on my sad days too. I might do some journaling where I write down everything that happened to me, not everything that would take forever, but write down all the things that I've been through in the past. And then I'll write things down of like, In the future, what I want to do, not what might happen, because focusing on the what ifs and the negative aspect is not helpful for me. Um, but I'll write down everything that I would love to do in the future, and then I will write down everything that's happening now and that I can control right now, because there is so much I can't control for everyone, not just me. And to focus on what I can control right now has been a process. But writing everything down and I like to always focus on the past first, the future second, and the present now because that way I can like get rid of the past and the future. And then just get grounded in the now.

Leslie:

Love that. Yes. Okay, three things. Gratitude. Yep. Take the time. Time bounded. Yes. So you're not kind of stuck in it. Yeah. And then, um, journaling. Focus on the past, the future, and then the present. Yes. Love that. Yes. So you shared your purposes, two purposes. One, the education and advocacy. And then two, around, dance and teaching. Is that right? Yeah. Yeah. And a little bit of your, and your journey of discovering that, which was, dealing with the depression and then really focusing on. being in the present. And it's through that process where it became clear this is what I'm here to do.

Kylie:

Yes.

Leslie:

Yes. Yes. So when you are focused on your purpose and you're living in purpose, how does that make you feel?

Kylie:

I, I just feel so happy again and so nice because I was so stuck for so long to be able to

Leslie:

Yeah, take your time. I'm gonna grab one too.

Kylie:

To be alive and here, um, And Able to even find my purpose. It's, it's an amazing feeling. Like, it's an overwhelming happy feeling.

Leslie:

Really? Yeah, and it, when I hear you say that, what, what I feel is it's because for so long you were in this other place, and you're on the other side of it now, and, and, Is it because you can see a broader picture or? Yeah. Yeah.

Kylie:

And not only like a broader picture, but I can like actually see the picture because I was, I was so numb and couldn't see life clearly. And once I was on that other side, like I can actually focus to

Leslie:

find the purpose. You mentioned that part of your purpose is education and awareness and what you what I just heard is there was so long where you were numb there Hopefully will be people that are listening to you and they might some might be in that place. What would you tell them? Don't give up

Kylie:

That's a big one and It, I know how much it feels to be, like, to feel stuck. It's a huge feeling, and it's hard, and it feels impossible. Um, and advocating for yourself gets so tiring. Uh, so, ask for help if you can. If you have someone you love, or someone you feel safe with, bring them with you to doctor's appointments. And, um, Just don't give up advocating, uh, stick up for yourself, even when it gets exhausting because there might be a lot of people not listening to you and saying it's anxiety, saying it's depression. Uh, just keep looking forward or looking in the present, whichever helps you most. But, um, it's, yeah, it'll feel impossible. It'll feel like you just want to give up, but. There, there is the other side that you will eventually

Leslie:

get to. And what about people that haven't gone through that challenge? What would you, what do you hope they learn from you? Um,

Kylie:

I hope you can see that everyone is going through something. Um, Even when I was stuck in the depression, I would always hide it. I would, I looked happy. I would smile. I would laugh. I would look like I'm having a great time and I was going through so much. So don't, don't judge someone of how they look and always remember that someone's going through something and to treat them with kindness and If you do know that they're going through something to be there for them and they might not want to talk about it So just being present with them means a lot. Mm

Leslie:

hmm Yeah, thanks for sharing both of those. Yeah So what does the a day? Look like when you're living in your purpose take us through what that looks like.

Kylie:

Um, I Can I take you through my medical day too? Yeah, absolutely. Because that has a lot to do with it. So when I get up, I usually have to take my medicine before I get out of bed, or else I feel like I'm going to pass out. Um, I have to take my inhalers, I have to do oxygen, and usually by then I'm feeling like, I don't feel like getting out of bed physically, which means, which makes me mentally, like, not want to get out of bed, because I don't know what that's going to bring me to. Okay. Um, and I get out of bed, and I have to start my feeds, because I have a feeding tube. Okay. So, I put my nutrition through there, and then I have to do my infusion. I have a port, so I do infusions through there. Okay. And by then I'm exhausted and it's hard to keep going. Um, and then I might take some time to just lay in bed or read. And that starts to get me to feel better and, uh, think about the present. Like we've been talking about a lot. And what I can do in the day to feel more in control, which might be. Um, painting my nails, just like being mindful, coloring, reading more, um, and then I have, I have to take medicine every three hours. So, uh, I'm supposed to do it through my feeding tube, but I get just so tired, it takes like 30 minutes, so sometimes I just take it by mouth, and then it makes me nauseous, and then I have to lay down, and, um, I have to sleep like 12 to 14 hours just to get like maybe 2 or 3 hours of good, feeling good in the day. And by the end of the day, like, I just feel exhausted and worried about the next day. And I have to remind myself that I am here for a reason. It's a huge one. And I am able to teach amazing kids at dance and that helps me kind of bring myself back into why I'm here.

Leslie:

Yeah, yeah. So, tell us about your teaching. Because we're here in your studio, which is awesome. Yes.

Kylie:

It's the best. I am just so grateful for my job and all the students I teach. I was going to say my favorite part, but I just have so many favorite parts. Uh, a biggest thing is, um, I, I just miss dancing so bad. It used to be, I could dance standing and going full out. And then I was could only dance on the floor and I would dance with my arms and then I could go in my wheelchair and just kind of do our movements. And now my health is to a point where it's hard to do any of those. Um, Um, but I've been able to change my focus on choreographing and teaching others to kind of live through their movements. And so probably the coolest part is being able to teach a combination or teach, um, I teach the competition team mostly and choreograph their dances. And I get to, instead of perform on stage, I get to sit in the audience and look at my choreography. Like, come to life, and then I get to see my dancers when they come off stage, and I'm just like so proud of them, and also I've been able to be proud of myself of how far I've come, and I get to teach them now, and spend so much time with them, it's so nice. Right. How long have you been teaching? Um, I started assisting when I was about 14 years old, and then I started teaching my own classes when I was about 19, so, 5, 6 years, yeah, yes,

Leslie:

it's incredible, Kylie, your day is a lot of taking care of yourself. Yeah. And. Fueling yourself both mentally, it sounds like. Mostly mentally. Yeah. Yeah. I'm at a loss for what to say because it is something that most people don't live through. Yeah. Yeah. How do you feel in this moment? I

Kylie:

feel good.

Leslie:

Do you?

Kylie:

Yeah. It's, it feels good to talk about because I was, I was holding so much in years ago that now that I'm able to talk about it, it feels good. It's overwhelming. Sometimes I get emotional. I'm a sensitive human, but I've, I found two and I realized that that's not a bad thing. Right. That feels good to talk about.

Leslie:

Yeah. Well, I appreciate you. Talking about it was, you mentioned that you weren't always comfortable talking about it.

Kylie:

No, I wasn't. Um, I always wanted to feel comfortable, so I would be open about it when it first started happening, but I don't think I, you know, knew much about it, so it was hard to talk about in that aspect. And then once I did know a lot about my conditions, it just got overwhelming and I shut all of it out. I didn't want to talk about it, and I didn't want to open up about it. But two years ago, When I started getting really treated for my depression, I started wanting to talk about it more and educating people about it and kind of started that way.

Leslie:

Yeah. When you look out into your future, whatever time horizon that is, what do you see in terms of your purpose? And I know we talked earlier about looking at the past and the future. Yeah. Um, are you okay looking out? Yeah. Okay. What do you see in, in your, in

Kylie:

your future? I have to, I have to keep my thoughts flexible. Yeah. Because a life with chronic illness is so unpredictable. Um, but I hope to see myself grow even more. Mm hmm. And take the education and the advocating further, and. talking more about it openly. I do talk about it openly right now, but just starting conversations like, do you know what EDS is? Do you know what gastroparesis is? And I don't know. I, I, I hope to continue my purpose and I don't know what, where it will take me in the future, but I hope to just keep this outlook where I am

Leslie:

now. Yeah. Yeah. continue to grow through your purpose and it will evolve and being open to how it evolves.

Kylie:

Yeah.

Leslie:

Yeah. Earlier you talked about advocacy and, not giving up and continuing to advocate. What does advocacy look like?

Kylie:

Um, huge thing is speaking up. I, my whole life has been so hard to speak up and speak my emotions. Because I'm, I'm a woman, and other people like to view a woman as dramatic and not supposed to speak their mind. And getting to the point where I could speak my mind and speak up for myself, I am now able to be in a doctor's office, and my doctor might say something that shouldn't come out of their mouth, and I'll be like, what do you mean by that? Or I I can say now that what I have is real, and I believe in that, so I need you to believe in that. Um, just really speaking up for myself, and advocating for myself, even with friends and family, or strangers, and telling them that I have a chronic illness, so it's hard to lift my glass, can I have a straw, if they don't have straws. This is restaurants. Or trying to, like, get rid of straws, which is good for the environment, but also for disability reasons, not helpful. So sometimes you have to ask for that, and they'll give you, like, crazy looks. It's just, like, tiny things like that where people don't understand. And maybe I wouldn't understand either in the past, but now it's, like, I have to explain myself for everything. I used to give up and not, but now I can be like, uh, can you open the door for me? Cause I can't.

Leslie:

Yeah. So, it's through your words and using your voice, to help advocate for yourself to help get what you need. Yes. Yes. I, I think that is so important for your situation, I think it, it also relates to some of the things I'm learning through life's purpose and it is that sometimes we get stuck by social norms, you know, society says we're not supposed to speak up or whatever. To make the other person comfortable. Right. I need to be comfortable too. Exactly. And recognizing that you have needs as well. And. In terms of purpose, to fulfill the purpose and to do that, I need to advocate for myself or I need to go up against some social norms that might be standing in my way. Exactly. And that doesn't

Kylie:

mean if like, that's not me being rude, that's me being respecting not only me, but you too. Like. My family, especially, they don't want me to hold back my thoughts of how they can help me. I need to speak up for that.

Leslie:

Right. Yes, because you're helping them. Yes. Learn yes, okay. I love that. I love that. What else on the topic of purpose is on your mind? I can't think of anything. You've shared your story, your journey of discovering your purpose, and that was through being in a dark place and coming out that dark place, and then really staying in the present, and it makes you feel so happy. It does. Overwhelmingly happy when you're in purpose. It does. And you talked about your, your daily routine of just taking care of yourself and, um, and in doing that, allowing you to fulfill your purpose. Yeah. What advice do you have for those that are listening to this who might not have discovered their purpose, who might be in that place of uncertainty on, what am I here to do?

Kylie:

It's okay to not know. You don't have to know everything right now. Figuring out your purpose is such an individual thing. And I think accepting that you don't know right now is okay. Right. And there's plenty of time to figure out your purpose. Um, I think starting with your purpose. of just being alive and being here on earth is a good way to start. That's how I started and definitely took me to where I need to be. Right. So just focusing on the tiny bits of my purpose is to live today and to make it

Leslie:

tomorrow is a good start. Yeah. So there is an Austrian neurologist and psychologist. named Viktor Frankl. Have you heard of him? I

Kylie:

have not.

Leslie:

So he's he's now deceased, but he wrote a book called Man's Search for Meaning.

Kylie:

Oh, I love that.

Leslie:

And he, as a child, got very interested in the topic of life's purpose. And then during World War II, he was a concentration camp prisoner. Oh,

Kylie:

wow.

Leslie:

And He continued his studies, I guess, and in the most horrific situations. Yeah. And afterwards he wrote Man's Search for Meaning and one of the things that he said is, it is not what, You are asking of life, but what life is asking of you, it's about asking, what is life asking of me right now

Kylie:

in this

Leslie:

present? And that's what you just talked to, that what may be right now, it is about being alive and taking care of yourself.

Kylie:

Exactly.

Leslie:

And that can evolve as your life evolves. But It really is about what life is asking of us. Is there anything else left unsaid on the topic of purpose?

Kylie:

I can't think of anything.

Leslie:

Anything else on topic of advocacy or dancing? Um,

Kylie:

Kind of dancing. I feel like Every time I say that I'm a dance teacher or that I like dancing a lot of people say oh I could never dance like I don't have the rhythm but something I like to do is I just get up and I kind of dance in my bed and it's just so fun and I don't know. You can dance too, whenever you are Even if it's behind closed doors, it just feels good.

Leslie:

Oh, yes. Yes So, um, give it a go. Even if you don't feel like you have rhythm. Yeah. Move your shoulders and close the door and see how it makes you feel. Cause it might lift your spirit. Yes. Yes. Yes. I'm going to do that. I love to dance though.

Kylie:

Oh, it's just so fun.

Leslie:

Yes. Do you do adult,

Kylie:

uh, teaching here? We have one adult class. It's an adult jazz funk. It's kind of like, Just moving your body and getting your heart rate up. Okay. It's really fun. Okay. My sister Katie teaches that. Yes. And she's the best anyways, so. It's a lot of fun. You should join. I'll have to look into that.

Leslie:

Yes. Yes. I would, I envision myself as a hip hop dancer in my mind's eye,

Kylie:

oh, I, I could do all the dancing, but hip hop is the only one that I could, I just can't do as a very ballerina ish person. So trying to get myself to do those sharper, crazy moves. It's just, yeah, but it's still fun.

Leslie:

Absolutely. Well, thank you so much for sharing your journey of discovering life's purpose and it is a journey. It is the big journey. Absolutely. It's so worth it. Yes. Thank you for being here.

Kylie:

You're welcome. Thank you for asking.

Leslie:

Absolutely.

There is so much I've been reflecting on from this conversation with Kylie. One of the things that I am working to bring into my life is living each moment by being present in the moment. I think about the times when I have worry or I have anxiety, and those are oftentimes when I am thinking about the past. Or worrying about the future, but it's when we're living in the present moment where we can be grounded and we can truly be living our lives. Kylie, thank you for bringing that to us. And thanks to all of you for tuning in.

Leslie:

Purpose Project is brought to you for education and for entertainment purposes. This podcast is not intended to replace the advice that you would receive from a licensed therapist or doctor or any other qualified professional.

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