Healing in Real Time with The Twisted Wanderer featuring Jac Rocco

In this episode, we meet Jac, a.k.a. The Twisted Wanderer.  We dive into her personal journey with scoliosis and overcoming adversity. 

Jac is a 34-year-old scoliosis and spinal fusion warrior who turned her personal challenges into a platform for connection and advocacy. Diagnosed with scoliosis at 13 and undergoing spinal fusion at 25, she spent years navigating chronic pain, misinformation, and isolation—without a roadmap or community.

In 2023, Jac launched The Twisted Wanderer to fill the gap she once felt—offering support, resources, and real talk for adults and young adults living with scoliosis, spinal fusion, and invisible disabilities. Her mission is to break the stigma around chronic pain, mental health, and disability while embracing the healing journey in real time.

Through vulnerability, advocacy, and self-acceptance, Jac is helping others feel seen on their own twisted paths.

The Twisted Wanderer is more than a brand — it’s a movement rooted in resilience, vulnerability, and authentic storytelling. We exist to amplify the voices of those living with scoliosis, spinal fusion, and chronic pain, while honoring the power of creativity, connection, and healing.

Through honest conversations, poetic expression, content, and powerful community-building, we aim to reshape how the world views curved spines and invisible battles. We are here to break the silence, dismantle myths, and create safe spaces where people feel seen, supported, and

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Transcript

SPEAKER_00: 1:19

Welcome back to today's episode of Unapologetic Living. I am Elizabeth Elliott, and I am your hostess, and I am excited to have Jack Rocco, the twisted wanderer, on my show today. Welcome, Jack. Hi, Elizabeth. Thank you so much for having me. I'm excited to be here. You are welcome. I am excited to have you, especially with, well, when this show is released, it will be officially June 1st. is Scoliosis Awareness Month. And that's how I found you on the internet, on Instagram. So I always love that. So I'm glad to have you and that we can talk a little bit about scoliosis and bring more awareness to it. Yeah, definitely. And I don't know for you if it was something that Like, you know, I kind of attach myself. I know I have it. But I think over the years, I don't detach from it, but it becomes a part of your life. Definitely does. It's kind of like on the back burner, but it's also there. I

SPEAKER_01: 2:31

agree. I definitely relate to that. I feel like I spent most of my life. with it on the back burner, just because, I don't know, I feel like, I don't know if you can relate to this, but when we're diagnosed, I feel like they treat it so nonchalantly, like that it's not a big deal or that it doesn't need attention. So I was diagnosed at 13. I feel like they didn't really tell me much and then kind of just figure it out on your own. So I definitely agree. It goes on the back burner

SPEAKER_00: 3:03

for a while. Yeah. So you were diagnosed at 13. Can you talk a little bit about like pre-diagnosis? I know everybody has their own unique journey. I didn't feel any back pain. It was something that my great aunt was like, because she does have it. And then my mother too. And it happened to

SPEAKER_02: 3:25

be,

SPEAKER_00: 3:26

you know, we were swimming and we need to look at her back. But I wasn't complaining of anything. It was they decided to look me up and down. Yeah.

SPEAKER_01: 3:41

Wow, that's so interesting. Because I, I personally I was diagnosed at 13 didn't really experience pain until around 1516 years old. And then that's, I've pretty much been in pain my whole life ever since. But it's I have heard some people with scoliosis never experienced pain. So it's, Nice to meet you, because I've never met someone who didn't have pain with their scoliosis. Oh,

SPEAKER_00: 4:09

I want to take that back. I have pain now,

SPEAKER_01: 4:13

but

SPEAKER_00: 4:13

I wasn't. Definitely wasn't something that... I met a young woman recently. She's 18, and that was one of her symptoms, which is why they went in. She was experiencing pain. Now, she's not fused at all, but... And another little girl, a mom reached out to me who I used to take care of when she was small, back pain. She's in pain. And that just wasn't an experience for me until after they cut me open. It's when I started to notice it. Okay. You know, they decided to operate so early. So I was diagnosed. I was going to ask, when was your fusion? It was younger. I was 12. Okay. Wow.

UNKNOWN: 5:00

Wow.

SPEAKER_00: 5:01

So could it have waited? I don't know. So you were diagnosed at 13. Do you remember having pain before? Is that why? Okay.

SPEAKER_01: 5:11

We pretty much had that. What is that test called? The Adams forward bend test at school in middle school. So it's like, I always say like, this is my second year of seventh grade. And that's when they did the test. And then they were like, okay, you have scoliosis. And then, That was really it. That's all that happened until I told my parents around like 15 or 16, I think I'm in pain. And they're like, how are you in pain? I'm like, do you think it could be from this all these years ago? And then that's when really our journey began, like myself and my parents kind of went out to kind of go find what is scoliosis.

SPEAKER_00: 5:54

So you were around 15. And what kind of pain do you remember experiencing at that time? Oh, I can never forget that pain because I hate

SPEAKER_01: 6:02

that pain because I find it so much worse compared to like my own vision pain is just it's in its own ballpark. But that chronic every day, just feeling like me and my spine were at war pretty much from 15 to 25 years old until I had that surgery. It just felt like. I don't know, like on some days debilitating and you just wanting to be the 16 year old in high school, but you're just in so much pain all the time. That's really all I remember is just being in so much pain.

SPEAKER_00: 6:37

So it, was it an egg? Did that, did it travel down your legs? Because I know that can happen. Like it, somebody's it's hips as, as I'm you know, going into perimenopause and working with clients, it's not always their back. Yeah, because of the back, the knees are going out the neck. Yeah, all of it.

SPEAKER_01: 7:03

Yeah. I guess mine was really I can say I it was definitely back pain. And like on some days, just mostly back pain, a lot of back pain, like feeling like I couldn't hold my neck up, just feeling like heavy in my body that I didn't, felt like you were carrying something and you just couldn't take a rest, I guess. That's really what it, I hate thinking about. I haven't thought about what it felt like in so long because it was such a, like it is a relief, like you still have chronic pain with surgery, but it's such a different feeling type of pain. And maybe that's because the spine isn't completely an S anymore. Maybe.

SPEAKER_00: 7:52

Yeah. So now, if have you seen a Shroth practitioner over the years or no? So

SPEAKER_01: 7:59

no, funny thing about that. I was never introduced to Shroth. I was in PT from probably 16 years old until like, in my early 20s, but never was it Shroth, never heard of Shroth. I think I heard the word Shroth one time before spinal fusion surgery, and you know when you've just reached your limits of being in pain, my mind was probably closed off to it at that point when I heard it, just because the surgery was right in front of me, it was happening already. A lot of factors, like I was losing... my insurance, like under my parents. So like, it was to me, like, that was, that was my direction I was going. So I wasn't open to hearing Shroth at that point in time. I think it was too little too late. But like, I'm learning all about Shroth now. So it's not too late.

SPEAKER_00: 8:52

Yeah, me. Yeah, me too. In the last two years is was the first introduction to Shroth. So really? Yeah. Do you know your curve pattern?

SPEAKER_01: 9:01

I do. I've learned my curve pattern and I've learned my convex and concave sides. They're still very hard to like, like not fully memorized yet. Like I have to think of little tricks and ways to remind myself which side is which. What is your pattern out of curiosity? It's pretty much, well, I didn't know this because you think of your curve prior to surgery, I had an S curve. an S-thorough lumbar curve, so like a hole through the whole back. And what I didn't realize is when I sent my new x-ray to actually like Dr. Beth from Strength and Spine is where I kind of found out my curve type from her. And it's pretty much just a lower left lumbar curve. So my goal with my curvature now is to just be completely straight. you know, stacked over my hips, wanting to find that like evenness and balance. And I'm kind of not leaning into my curve like I always want to. So that's been really cool, just because learning how to move better, really, for your curve type, which is crazy, because in my head, I still had an S curve, but it's like I had surgery and that was removed. So it's literally just a lumbar curve, which is I feel like it should be obvious, but to me, I was like, wow, I have a new curve now.

SPEAKER_00: 10:28

Right. So in the middle of, okay. So do you, so you had the S curve. I wonder if that would have been considered the three C pattern.

SPEAKER_01: 10:40

Yeah. Oh, you mean specifically the, hold

SPEAKER_00: 10:42

on. Yeah. Yeah.

SPEAKER_01: 10:43

Okay. I may not have that memorized.

SPEAKER_00: 10:46

I know every time my guy is drilling me with questions to make sure I know. Yeah, it's very, it can be very hard. It really can.

SPEAKER_01: 10:56

Yeah, it's, it's been a journey, just because, like, I'm glad you said it, because it really is a lot to learn. So I don't think I have that specifically down then. But I'm on my way, because there's just so much to learn once you realize that it really is all connected. And it's not just a curvature of the spine, and it affects your entire body. There's

SPEAKER_00: 11:19

so

SPEAKER_01: 11:19

much to learn.

UNKNOWN: 11:20

Yeah.

SPEAKER_00: 11:21

I know. I know so much to learn. And then you're getting the information. But when you're looking at yourself in the mirror, right, it's easy to get turned around. Yeah. And switch it. So, you know, he was good about helping me because I'm a 3C curve pattern.

SPEAKER_01: 11:40

Can you break it down for me then?

SPEAKER_00: 11:42

I

SPEAKER_01: 11:44

might have to Google this.

SPEAKER_00: 11:45

Yeah, you might. So, um, it's, you know, it starts at my upper neck. It goes away from my heart. Okay. And then I S back, you know, so the lumbar curve, uh, yeah, goes the other direction. So I still have an S and the other thing that they look at is, um, The rotation of the spine. Yeah. And have it like, I think, a 10-degree rotation one way, and then it goes up, and it's a 10-degree rotation the other way. See,

SPEAKER_01: 12:25

that's wild to me. It was just never, because my whole life, it was just x-rays, and it's just like this whole thing is just like in all these different directions.

SPEAKER_00: 12:35

And then it's something about, like you said, with the shoulders and the hip placement. So one hip placement. pulls back. Yeah. And that's because of the rotation, I think.

SPEAKER_01: 12:48

Yeah. Like my knee, what is that called? I had gotten rid of it after surgery, but now it's like lurking back. That little, that drop. What's that called? When your foot drops? Yeah. Because one side is like falling, but one side's longer. Right. Noticing that for sure.

SPEAKER_00: 13:09

Yeah. I think my... head is not over the center of my tailbone. There's a shift. So, you know, the goal would be to get everything, you know, in

SPEAKER_02: 13:21

line.

SPEAKER_00: 13:23

It's the hardest work I've ever done,

SPEAKER_01: 13:26

actually. It is. It's like those simple movements that they take a lot out of you. Just the breath work, being aligned.

SPEAKER_02: 13:34

Yeah,

SPEAKER_00: 13:37

it's true. I wish I found it sooner. Yeah, me too. Yeah, the girl that I see, she was working with the Stroth practitioner and she's 18. She's a swimmer. Her curvature, which I don't know her curve pattern. I think it might have just been the long one, was 29 degrees. And Stroth, it was... it got down to 22 degrees.

SPEAKER_01: 16:58

Amazing.

SPEAKER_00: 16:59

But it doesn't just stay there, right? Just because you've gone to Shroth. Yeah. It's not just there, right? It's a chronic.

SPEAKER_01: 17:10

Progressive.

SPEAKER_00: 17:12

Right. So she started having back pain, more back pain again, and it's back to 28. She just started seeing a regular PT and And I just don't know that that is the correct path. And I want to kind of reiterate that to listeners, because if they are not scoliosis specific, a little more knowledge about the corrective exercises for scoliosis, I think that you can totally rehab the entirely wrong path.

SPEAKER_01: 17:50

Yeah. I feel like that's literally what happened to me my whole life. I feel like just wrong PT, no one, no curvature in mind. Yeah. Nothing. And it's almost like, what, what were you doing that whole time? So, but I also think it's, it's hard to everybody, we all are on this, our own journey and it's hard to, it's hard to be on that journey. So I just, cause I could have, you know, I was that person who like wasn't open to hearing like Shroth and I went my surgery way just because it was too late or in my head too late. So I don't know. I think we all, I don't know. We all have to choose what we think is best at our, at the right time for ourselves. And maybe like that's personally the journey that I'm on. It's just like, okay, I chose what was right for me at this time. And now I, You know, now I'm just like, okay, this is a big, like, I think as you age more with your spinal fusion, you're just like, oh shit, this is, this is staying with me. Ain't nobody going in there and taking them out. Like this is permanent. Right. I know. So. Oh,

SPEAKER_00: 19:07

so to, to step back a little bit, you 15 was when your parents and you really began on your journey to, and started delving into understanding it, did that include going to an orthopedist? What did that look like? Because you didn't have the spinal fusion until 25. Yeah. Then what was, do you remember your curvature degree back then? I know I was in the

SPEAKER_01: 19:42

high 40s. Okay.

UNKNOWN: 19:44

Yeah.

SPEAKER_01: 19:45

like maybe 48, 48, 43, 40. I would have to look, but I was definitely in the high forties and high thirties, just like, but just, I don't think we, and I love them. They're amazing parents, but I don't think it was enough to, to look more. Like I think back then you really just trusted your, the doctor. And I think that's what happened to like me, mom and dad. Like, I think we did the best that we could. Like we were like, okay, scoliosis, physical therapy, but we never really led to your own curiosity. Because to be honest, like I was 16, I was doing other shit. Like, let's just be real. At the end of the day, you do have a chronic illness and disease. But do you really realize the heaviness and the weight of that at 16 years old? I don't think so, especially when the diagnosis is treated, like I said, so nonchalantly. So I think we just did the best. But no, no orthopedics, none of that. But around like 18 or 19 years old, we did finally hear the word surgery for the first time. And I said, absolutely not. And I went to three more, I went to six doctors in total and three said surgery and three said no surgery. And I went with the doctors that said no surgery. And continued with PT, like just thinking like that was it. But I really had no idea the deafness of what scoliosis is until honestly when I started my podcast and when I found community.

SPEAKER_00: 21:33

Isn't that crazy? Me, easily. I mean, I've been living all this, you know, I had, it wasn't until I herniated three discs in my neck.

SPEAKER_02: 21:43

Oh my

SPEAKER_00: 21:44

goodness. Doing a headstand like in 2022, I think. And, and that is when I thought, oh my gosh, if I'm in pain in my neck for the rest of my life like this, I can't live like this. It was so bad. And that's when I really learned that just because our spines are already compromised in every area, not just where we're curved because we're, we're doing these compensatory shifts subconsciously to feel even in the world. Yep. And that is what really, I guess like sparked my, and I started really looking around and found the Instagram and social media community. And even then I, He helped me with my neck. But then that led to this horrible tennis elbow. And so when you think of scoliosis, I started, you know, because the neck and being in body work, I still use my arms. And so I was doing something new with my arms. And I was at PT. And they said, this OT happened to be there. So he kind of, he, he had another gal working with me. He goes, this is related to her thoracic spine. And I had just learned about Shroth. I'm like, you know what done. And there's a P S Shroth PT here. I said, I'm done here with regular PT going to the Shroth guy period. And, you know, tennis elbows gone. Wow. But I need, I realized the important, like, and that's, when I started doing the digging that, whoa, this is a much more. And as I get older, it could become a real. A real thing. Yeah. Yeah.

SPEAKER_01: 23:44

Yeah. It is personally for me. It's like it's just it's becoming more of like. It's almost like you wish you had this reality sooner because like that information wasn't. And it's just crazy to me because, like, Shroff was here in, like, the beginning of the 2000s. So, like, I don't know. It's just so frustrating, too. I'm glad that you found someone and were like... But it's just frustrating because you just wish that you understood the severity of, like, your life sooner than later. Because, you know, there's... And especially as like a woman with this diagnosis, you know, we have premenopause and like higher rates for like osteoporosis and things just because of that. And now you're adding scoliosis on all of that. And it's just a lot to take in sometimes. So I just hope people know that you're valid and that scoliosis is so much more than, like he said, than a curve and it does affect everything. And the fact that he could just look at you and be like, This is connected to her thoracic region. It's just like, oh, so cool.

SPEAKER_00: 28:49

Yeah, I felt really grateful for that insight. All right, so we're going to go back again. You said, what, 20s, 19? When did they mention potential surgery? You opted for not.

SPEAKER_01: 29:04

I opted for not, yes. And that's just, yeah, I opted for no. I was 18, turning 19. It was my... Senior year of high school. And I just was very afraid of going under. So I gave up. Yeah, I said no to surgery, but I gave up sports because, you know, that's what they tell you to do. If you're not going to have surgery, at least, like, don't play sports. I don't know. So we said no to that. I gave up rugby, and I pretty much just became... I don't know. Like... Not miserable, but it just sucked. You're just like, okay, so am I broken? I can't play sports. I don't want surgery. But nothing else is given to you. And you're just like, well, I guess I'm just broken.

SPEAKER_00: 29:58

Really. Up to that point, you were an athlete. Yeah. Okay. So you were staying active and mobile and doing things. You weren't a sedentary kid. Nope. So you gave up sports and then you eventually got to the space where you decided, okay, it's time.

SPEAKER_01: 30:21

Yeah, I mean, all these years later. Yeah, like for surgery, I think I ended up doing surgery just because I was like, is this the only way I'm going to be pain-free? I couldn't imagine life anymore. Like the amount of pain that I was in at 25 years old, it was just like ridiculous. I don't know. It just felt every day. Like, you know, we have our days. Like I like to call it Russian roulette because you just never know what you're going to get with chronic pain and things like that. So I get that we have that. Some days we wake up, we may not be able to do whatever we want to do, but oh my God, brain fart. Loving this happened. Give me a

SPEAKER_02: 31:12

second.

SPEAKER_01: 31:14

Okay. When, with surgery, I just felt, yeah, like it was just like, this is the only option to get out of pain. And I think that's what made me eventually just put my fears away and everything and just go under all those years later because personally i just wasn't i didn't find more information on my own i had a lot of trauma around my um spinal fusion surgery um because i had like my friend who passed like three years prior to that so like i have like a very interesting story i wasn't my best caretaker and it just led to surgery eventually and then Now I'm on like my healing path now, but it was kind of a rocky, rough years to get to surgery, if that makes

SPEAKER_00: 32:10

sense. Yeah. And then you have a fusion, I believe you said from T3? Yeah,

SPEAKER_01: 32:21

yeah. I think it's T3 to L1. I need to like double check my numbers, but I'm pretty sure it's T3 to L1.

SPEAKER_00: 32:31

Okay. And they essentially straightened.

SPEAKER_01: 32:37

Yeah. Yeah. I have, I think I have about like a 20 degree residual curve in my lumbar, my left lumbar, like goes this way. And that is something I should probably get looked at because I haven't been, but that's a lovely other conversation of, you know, doctors and dreading to schedule appointments. So, yeah. Did I answer your question, Elizabeth? I feel

SPEAKER_00: 33:14

like I'm really sorry. Yeah, yeah. And so, okay, so 25, you had the surgery. And then what do you, what, you know, do you feel like that, that, that was the correct? For me, yeah. I think it's hard to say, right? Because what's done is done. Yeah, I personally,

SPEAKER_01: 33:32

yeah, I say it all the time. Like I can't, if I, yeah, I would go through the terrible recovery of spinal fusion over and over again before I would not choose surgery because of the pain that I was in pre-surgery. Like it was just, it was just unmanageable and unlivable. And it was just, debilitating. So I feel like absolutely, I 100% am happy that I waited, though. I don't know, like, I, I truly, truly am happy that I waited. I don't know, I know. This is hard, because I feel it's, I feel like so many of us look at it as like, I think it gets a bad rap. Surgery, because as much as like we don't want it to get there, right? If you can fix your curvature, not fix, but like manage your curvature and your progression with something other than spinal fusion, that is absolutely amazing. Good for you. Yay for you. But if you do need surgery, I want to say good for you. Yay for you. Because there is an option there. And maybe it feels like a burden at the time that you hear those words. And maybe you're angry at yourself for being the one who needs the surgery. And why couldn't I have a curvature that didn't need the surgery? You know, I think a lot goes into this negativity around surgery when really it's given me a beautiful life. It's given me a more livable life, a more manageable life. And it's given me... you, you know, like you, Elizabeth and all these other beautiful people. So yes, I love surgery. I'm happy. I went through it. It wasn't rough and terrible yet, but it, it, it truly did change my life for the better.

SPEAKER_00: 35:35

All right. So, and yours was nine years ago. Yeah. And you, you, um, the recovery was rough.

SPEAKER_01: 35:45

Yeah, I had it. I had a really terrible recovery. I don't know. I'm just very honest about it. So just trigger warning for anyone. But yeah, my recovery was absolutely terrible. Like the first two and a half weeks.

SPEAKER_00: 36:02

Okay. So first you, were you in the hospital? How long were you in the hospital? I

SPEAKER_01: 36:10

was in the hospital for about a week. I went in the 6th, and I left the 12th. So, yeah, September 6th to September 12th. And...

SPEAKER_00: 36:23

Were you... Mine was so long ago. I have... The memories are not as clear, so... But were you flat on your back? Like, when did they get you up and walking?

SPEAKER_01: 36:40

Oh, God.

UNKNOWN: 36:41

Yeah.

SPEAKER_01: 36:41

Literally less than 24 hours after my surgery. Yeah. I was ready to fight someone, but yeah. Well,

SPEAKER_00: 36:49

you were on drugs too. Yeah. I mean that, I mean, that's, you know, like, please don't make me walk.

SPEAKER_01: 36:55

Are you on like, that was wild. They should really give you a heads up. Yeah. Right. Like, Hey, you just had major spinal fusion surgery. We want you to walk now.

SPEAKER_00: 37:08

Yeah. So when you talk about it being difficult, what kind of challenges did you face after that surgery? I

SPEAKER_01: 37:16

faced, well, I got sick a lot. That wasn't fun, like experiencing nausea with, you know, a brand new spine. That's rather terrible.

UNKNOWN: 37:29

Yeah.

SPEAKER_01: 37:30

The sleep was really bad. Like I just could not fall asleep in the hospital. And I did end up like losing my call bell one night. So please bring Velcro with you and make sure your call bell is attached to your bed. Because after surgery, like I needed to be moved and I couldn't find my call bell. And my mom loved her, loved her, but she was sleeping and, you know, they have you, um, you know, they have you flat and pressed down for all those hours. So your vocal cords, not, not the best shape. So I was literally like trying to yell for a call bell and no one heard me. So that was probably just the start to it. Just having to be in place where like you're in so much pain, but you can't even move on your own. Insomnia, anxiety, They did forget my pain medication the day I went home. It was just... Yeah. And just dreams. I had a lot of bad dreams when I did sleep. I had just a number of things between forgetting my pain medicine, not being able to sleep, the trauma from not being able to move in the hospital bed. I feel like it all just kind of went home with me. And I just remember... screaming, screaming in pain at night, not being able to sleep, like absolute, just, just terrible pain. I feel so bad saying that, but that's just like, it really, I really don't regret it. But the first two and a half weeks were rough. Like it was just, well, I mean, it's a

SPEAKER_00: 39:12

major. Yeah. I didn't realize that. Right. I think part of maybe being younger is, even I don't have all, the memories are less. Yeah. I don't recall. But when you bring certain things up, I'm like, oh, I was taken back to my bedroom, you know, for a minute at 12, you know? Yeah. So you don't, there might be an element of being able to, which I'm not saying go out and if you're younger, make that decision unless it's absolutely necessary because, yeah. But see, were you braced afterwards? No,

SPEAKER_01: 39:57

I was never braced. Never given an option. I had a steering wheel. That's what I called it. But it was like, it was like a circle and it looked like a steering wheel and you put it, you like strap it on your back. And I had to wear that for like three hours every day. So I guess help with the fusion. Yeah. But that was really it. I wouldn't consider that a brace. I think it was more so for the fusion.

SPEAKER_00: 40:23

Yeah. So since then, your nine years post-op, have you brought back a lot of things to your life that you had removed? Are you staying active? You did mention Shroth's I don't know if it's something you're regularly doing. What are you doing like post-op to stay healthy? I mean, really, it's a long, like there's no, I mean, it's with anybody, right? If we don't use it, we lose it. But definitely incredibly important for us to, you know, make sure healthy lifestyle choices for an easier time. I agree.

SPEAKER_01: 41:22

Right now, currently don't have a regimen, but I am starting to look into straws and things like that. Slowly getting into it need to find doctors around here. But personally, for me, it's been more of like just getting started again. I do like the mace. I know I'm Oh yeah. Yeah. That has been, that's been huge just because I was a huge weightlifter prior to surgery. I love like lifting weights and things like that. And I have slowly started to like trickled back in there. But a big thing for me has just been the mental, the mental work of it. I think it caught up and it was the reason for self-neglect all these years with like not choosing the best things for myself or my body and now doing like the mental work of like realizing that you know that is a traumatizing surgery and kind of just pulling back those pieces and taking care of myself i'm excited for what um you know what my new routine could look like i'm slowly I'm just dipping my toes into little things and keeping little movement while learning, but nothing, I don't have a full plan, which I would like, because like you said, it's important. We have to, you know, it's important to make a plan, especially as we age with this. So it's definitely in the

SPEAKER_00: 42:50

works, but. And I think part of it becomes trial and error, what is working for each individual.

SPEAKER_01: 42:56

Exactly. And I

SPEAKER_00: 42:58

think it's,

SPEAKER_01: 43:00

And that's like the fun thing about it. I think too, is once you start to understand your body and like Shroff, you start to see like, there's so many things you can do with scoliosis. There's so many movements that ways of working out that you can do. And it is so exciting. So I think just giving yourself grace, I'm trying to give myself grace as I get back to being a better caretaker and, um, Just know there's so many, like there's Pilates, there's like scoliosis Pilates. Who would have known? I didn't know that. Well,

SPEAKER_00: 43:36

right. And even yoga for scoliosis and understanding that, you know, I practiced and taught yoga for, I don't know, 16 or at least I practiced it and then started teaching, but didn't know that certain moves were going to collapse one curve and potentially cause you know, more damage in the long run. Yeah. In the long run. Our twists. Yep. Right. Creating more rotation. Yep. And if you're going again, just to a regular yoga class, that information. Yeah. Yeah. So. And I didn't learn that until the last like two, three years.

SPEAKER_01: 44:23

Just wild.

SPEAKER_00: 44:25

I'm glad I always was moving. But now it's like... Now I'm moving in a more strategic way that supports the alignment of my spine. Of your spine and your body.

SPEAKER_01: 44:39

It's so important. And it's crazy to me that we've been surviving for so long without this knowledge because it seems to be such... I wouldn't say... I don't know. For lack of a better word, it just seems to be such a trend for so many of us with scoliosis and effusion. Like... Not one person I've spoken to magically had the answers right at diagnosis and right at fusion. It really is just like magically stumbling upon it one day, like, oh, there's a way to strategically move for someone like myself. And like, here are all these resources. It's just.

SPEAKER_00: 46:27

And I think part of it is, which I think is why Scoliosis Awareness Month is becoming important is and more, you know, we're bringing awareness to, you know, making it more visible is that there's just no, I mean, the information's out there, but it's not, it's not getting to maybe the people that need it. I mean, it's taking too long. The Leatherman spine center here. I'm not going to knock them, but I went back and I, Not one time did they say, we're going to hook you up with the Shroth practitioner. Wow. I had to ask. This is who I want to see because I'd heard about it through somebody else. If you're going to a spine center. With scoliosis. With scoliosis. Wow. That's associated with the same hospital where the Shroth practitioner practices. Wow. you would think they would say, hey, this is who we need to hook you up with.

SPEAKER_01: 47:33

Yeah, you would think.

SPEAKER_00: 47:36

Right? And I think that's where the disconnect is about so many things when it comes to the allopathic path. I agree.

SPEAKER_01: 47:45

I think they're, I'm not going to say all because there's so many good ones, but it's just frustrating because I feel like there's just, Some people or like doctors, maybe like, like you said, they're missing the mark somewhere. Why do you have to? I mean, it's just the nature of the game with this. We're always going to have to advocate for ourselves, but it's just frustrating. Like, why can't they? I don't know, like see the diagnosis and realize the tools that are needed. Because straws can be used for anybody because everybody has a unique curvature, a unique curve type, different convex and different concave sides. This is all knowledge within scoliosis that we're learning. Are they not teaching it? Are they not passing it along? Do they not want to let go of old things? I don't know. It almost feels like we're the ones pushing it out there because They're just, I don't know, dropping the ball. No offense.

SPEAKER_00: 48:50

Yeah. Yeah. Yeah. Or it's not even, it wasn't, as you said, really a suggestion. I mean, as you mentioned them simply telling you not to play sports. Now I see mine was so long ago. I can't even, my mom's like, my mom was also undergoing breast cancer treatment at the time. So she has no recollection either. Like, we have no idea. I do know. we went on our first family ski trip where I learned to ski after the fusion. I don't know when, I can't remember the date, but they didn't, I, I, my mom cannot recall after the surgery, them telling me I was, you know, off limits after I think six months, I was braced for six months after. Wow. So, I mean, just during the day. Yeah, I was going to ask. Yeah, so I didn't. It was, you know, really hard, plastic, clear brace that was miserably uncomfortable. But they should just not recall any sort of wild to me, you know, restrictions.

SPEAKER_01: 50:05

Because it's so true, like. You're just making me think of something. I just thought of this now. I could probably go on a rant, but that's really funny because they're just like, oh, you have scoliosis. Give this up. But then it's like, oh, you have spinal fusion. And then afterwards they're like, yeah, you can do whatever you want. Be careful. Yeah. What the fuck? Yeah. Which one is it? Right. Right. Makes no sense. That's literally something I just thought of now.

UNKNOWN: 50:33

I'm like.

SPEAKER_01: 50:35

Wow.

SPEAKER_00: 50:35

It doesn't really make sense. And so all of a sudden your spine is strong enough when, I mean, the spine was doing what it needed to do to stay strong. Yeah. But it was creating pain and discomfort. I don't know. I mean, you still have some, I mean, I'm going to guess that you still have some pain. Yeah,

SPEAKER_01: 51:01

I still have some pain and I'm, I'm on this journey now where I'm trying, where I'm like deep diving into the lumbar scoliosis and digestion because I know issues. I'm like, Oh, so I'm like on that journey. Cause I, this lumbar curve is like making me nauseous, making it hard to eat.

SPEAKER_00: 51:23

So. Oh my goodness. You know what? That's, and that was another thing. So I have had, um, you know, digestive troubles for a long time. And, um, it wasn't again until I had, well, I had a colonoscopy and I had an endoscopy and both of those were after two kids. So I don't think I noticed it until the pregnancy also shifted my body again. Gotcha.

SPEAKER_01: 51:56

True.

SPEAKER_00: 51:57

And I looked at the GI doctor. I said, do you think this could be caused by my back?

SPEAKER_01: 52:04

Yeah, what'd they say?

SPEAKER_00: 52:07

I just don't think so.

SPEAKER_01: 52:09

Really? And so then- All the research I'm doing says the opposite. Tell me about it.

SPEAKER_00: 52:17

But you know what? They're trained in GI. They're not trained in scoliosis. And that's where you can feel a little crazy- That you knowing that the body is one entity, that it's everything. I hear you. I know. So you too. And when I finally met someone who told me they had a hiatal hernia like me and also had scoliosis, I felt so validated because... No one I had not met. Well, really, I'm just meeting people. I happened to be with this girl and she told me she had a hiatal hernia. And I was like, oh, I'm not alone. Like this really like my intuition and insights that these could be connected are real. Right. And it's so nice to.

SPEAKER_01: 53:12

It's so nice, but it's like frustrating, too, because you're like a. fucking told you like doctors you know but it is it's so validating because obviously we're all gonna present our symptoms differently but a lot of us are gonna have the same one like like the hernia you know what I mean and it just shows you like it's connected to everything and yeah exactly what you said it just feels nice to be like okay I'm not being dramatic or I'm not being this like this is actually happening like these things are connected because why wouldn't it be? I'm like, well, why wouldn't it be? Like my curve is right in my lumbar. And if I think about what's in that area, like, you know, and I can't even say it anymore, A and P, but like those organs are right there. It would make perfect sense to have a tummy ache or not be able to digest well. Right. And they just look at you like it's just, crazy idea. I'm like, why? Yeah, so simple.

SPEAKER_00: 54:17

I think, too, I had, you know, a ladies exam. And I was like, Oh, your uterus is way over, which I think to the right. And so right. And I was like, Oh, that's because of my spine, too. Like everything. Yeah, everything's a

SPEAKER_01: 54:35

little bit off. Yep. I'm telling you, what I say, I'm like, it's just like your body is in constant tug of war. So your organs and everything, your spine is just always slowly just moving. In my head, that's how I picture scoliosis now. Because I used to just picture it as, oh, my spine's pissing me off. But it's just, it's everything. It can affect everything. It affects mental health. It can affect your mood. It's just like once you start learning all that, it's just nice to feel more valid and at home in your body to be like, okay, this is the why I am this way and how do I learn how to grow with myself instead of growing against myself. I feel like it's the true game of this diagnosis, I feel. It's just learning and unlearning all the things that aren't true and realizing you know way more than they've led you to believe.

SPEAKER_00: 55:48

Yeah, absolutely. I think that's so key in, you know, learning to trust ourselves. Definitely. And then, you know, you know, gathering knowledge and and then figuring out like what resonates as the best mode to move us forward. Because again, this might feel, Pilates might feel good to one, the mace another, and then I know you know, if you get out there on Instagram, you've got weightlifters, you've got climbers, you've got dancers, pole dancers. You have people who have figured out a way to work with their back.

SPEAKER_01: 56:46

Yeah. I love it. Cause it gives, cause it gives you like for me, cause I love weightlifting. Like I still love weightlifting. So just seeing Dr. Red, like weightlifts was like, hell yeah. Or like seeing an Olympic climber. What's her name? Rock climbing. Yeah. Yeah, or like Meredith, who's like, in Macy's, they praise and dancing and never gave it up. Like, it's just, it's really, really cool to see. They told, you know, like, meaning like the wait and see doctors, those are who I call bad doctors, the wait and see doctors told you all this false information about your life and your body. And now like, It's almost like a rebellion, like taking it back and doing all these amazing things with a curved or a fused spine because you can.

SPEAKER_00: 57:37

Yeah, yeah, yeah. I know that I have a timeframe today, unfortunately, because I think we should keep going. I know, I could talk to you forever. But I know that you started a podcast as well and you have a website, The Twisted Wanderer, and people can connect with you. in that way. Right. It's, is it just twisted wanderer on Instagram or is it the twisted wanderer? I always do this.

SPEAKER_01: 58:07

I think it's the twisted.

SPEAKER_00: 58:09

What? Let me double check. I'm going to look too, because I think your website is the twisted wanderer.

SPEAKER_01: 58:15

Okay. So then my name is the twisted wanderer too, just so it matches. Okay.

SPEAKER_00: 58:20

So can you share a little bit about your vision with your podcast and your Instagram, your Instagram, I want to say community because I do feel it's definitely becoming quite the community.

SPEAKER_01: 58:38

My biggest goal is just community and to break the isolation around scoliosis and everything that it really does cause. Specifically for me, like I just remember feeling so alone and scared at 25 years old and all that there was was just research for pediatrics, which is so, so important because if we can catch things early, maybe they won't need surgery. But it wasn't the information I was looking for at 25 years old. So the Twisted Wanderer pretty much just came from... A little bit back story is I was supposed to go to Bali and go volunteer with the sea turtles and just go live my nomad lifestyle. And then I had surgery. So I canceled that trip. Never got to go. Still planning. That will be a full circle moment. So the inspiration just came from Bali. wanting to do something fun, but needing to do what was right. And I just really created something to connect with other people who may feel lonely and afraid of surgery. And I took that to the podcast of Unaligned and Unfiltered to kind of be that place where we could all talk about it. I do share You know, we have grief with our spinal fusion surgery. I have grief from other traumas of my life. I also have ADHD, which can be very tricky with trying to take care of yourself with a condition like I do have. So my goal is to just showcase that it's never too late to start taking care of yourself again and to just break isolation, build a community of people who share similarities and share just lift each other up and make each other feel safe and seen because it's just so important to feel safe and seen, especially when you are isolated. So that's my goal with all of that, just creating community and advocating for all the invisible illnesses I feel like ADHD, scoliosis, grief, trauma, because just because you can't see them doesn't mean they're not there. And we all need support, I feel.

SPEAKER_00: 1:00:55

Yeah, I just love that. I know we do. And there is so much unseen and you just don't know when you walk out in society to know what someone is going through. Exactly. I

SPEAKER_01: 1:01:13

just feel we can make one less person alone. That's the goal because I hated not knowing anything. that there are other people like me that who had a spot of fusion or had a curve, you know?

SPEAKER_00: 1:01:26

Yeah. Yeah. I mean, gosh, yeah, my, I mean, I knew my mother did, but, and my great aunt and I didn't meet anybody else until I'm telling you. I swear. Well, and then I ended up with a couple of clients who come to me randomly, but again, they're older. They're, they're around 70 and, So I still in this town do not really know someone my age who has lived with it, you know, since youth. I know it can be diagnosed later too, because I have clients who are now showing up with. Oh, really? Yeah. It can happen. I think definitely after perimenopause, it doesn't really matter. Oh,

SPEAKER_01: 1:02:12

that's true.

UNKNOWN: 1:02:12

Yeah.

SPEAKER_00: 1:02:13

But I didn't have anybody growing up with it that I could connect with or relate to. And so I do think I love the work that you're doing and Meredith is doing. I mean, well, everybody, right?

SPEAKER_01: 1:02:27

Yeah.

SPEAKER_00: 1:02:28

I do think it's difficult because the young gal that I see, I think she's pretty isolated too. She doesn't, you know, she's not mentioned much. But like you said, at 16, you're just kind of living your life.

SPEAKER_01: 1:02:44

Yeah.

SPEAKER_00: 1:02:45

And the wisdom from like 47 to give that 16 year old, like they don't care. You can't tell a 16 or 18 year old anything. No,

SPEAKER_01: 1:02:54

you couldn't tell me shit. I was like,

SPEAKER_00: 1:02:56

I

SPEAKER_01: 1:02:56

don't want to go to physical therapy.

SPEAKER_00: 1:02:57

That's right. Fuck that. And you don't think it's going to happen to you. You know, you're kind of in a place where things won't get worse or you don't understand the importance of and you can't make someone 16 to 18 get it. And

SPEAKER_01: 1:03:13

it's also, yeah, I think that and it's like it could be just because of like the grief of it. Like 16 is that perfect age to just live in that denial stage of grief. And then you don't realize what it is until years later, but. Like a place to chill.

SPEAKER_00: 1:03:30

Yeah. Yeah. It's definitely, and that it really is a personal journey. Yeah. And I love that. Well, I just love that we're all trying to help others. Me

SPEAKER_01: 1:03:42

too.

SPEAKER_00: 1:03:42

You know, maybe just a little bit of one nugget that maybe somebody can gather from our conversation today. Exactly. And then we've done a little bit. Exactly. That's

SPEAKER_01: 1:03:54

the goal. Yeah. A little more. A little turns into a lot. It'll just take some time.

SPEAKER_00: 1:04:00

Yeah, yeah, yeah, yeah. Well, thank you so much for joining me today. It was great. I know we met last week. I know. We meet again. Thank you for having me. I'm so appreciative of you joining me and sharing your journey.

SPEAKER_01: 1:04:17

Thank

SPEAKER_00: 1:04:18

you. I love

SPEAKER_01: 1:04:19

sharing it. It was fun. I like switching. It's like I haven't been a guest. Oh,

SPEAKER_00: 1:04:24

you haven't? I think this is my second time. Yeah, I know. I haven't really either. I've been on one and it hasn't been released. And so it's fun to be on the other side.

SPEAKER_01: 1:04:35

Yeah.

SPEAKER_00: 1:04:37

Yeah, the one time. So I'll look forward to our meeting again. Me

SPEAKER_01: 1:04:42

too. It'll be fun.

SPEAKER_00: 1:04:43

All right. Thank you. You have a wonderful day. You

SPEAKER_01: 1:04:46

too.

SPEAKER_00: 1:04:47

Okay.

UNKNOWN: 1:04:49

Bye.