Living Boldly Beyond a Diagnosis with Stacy Scarcella & Manon on The Healers Café

paired with a creative and we source unsigned and independent creators for all of our our projects. And it gives me that flexibility and freedom. And so when I left corporate, it was a box, and I wanted to open the box and have it as wide as possible. And so that’s what’s been so fulfilling over the last decade, is I am never bored. I am working on Fashion One day, the next day, a tech product that hasn’t launched yet, and then the day, a day after that, I’m working on some fashion brand, or I’m working on a health product. It is so fun because every day is a different type of project.

Manon Bolliger  07:33

So I’m in the parallel creative I think you had in both, but in really it’s the freedom, freedom of creativity and creativity. Yeah, so I just, I’m just curious, because, you know, according to your bio, you were diagnosed with Marfan, which, you know, if you read the diagnosis, it’s pretty grim. And you know, there’s a lot of things that are you know that if you absolutely were mortified by it, you would, you know, see yourself at some point having a heart issue, absolutely no children and all kinds of, You know, physical disadvantages. Let’s call it that way. That is not your story. So what was your attitude towards, you know, shifting, wanting to be creative, looking for freedom during a time where, you know, a lot of people would be in panic and in fear with their diagnosis. What do you see like you know, we’re we become who we are by the challenges we we face and the things that we learn from, at least on some level, I believe, you know. So what can you share you know to an audience that might be challenged with some diagnosis where they’re, you know, feeling quite stuck, definitely uncreative about it. And, yeah, so what? What happened with you? What? What did you do? Or it’s

Stacy Scarsella  09:16

an interesting journey, because it was, for sure, a shock when you’re 25 years old and you’re going in for support, because I had struggled with so many different types of of ailments over the years. And I was a caf I was a college athlete, I was very active, and the last thing I ever thought was wrong would be a heart condition and everything else that comes with Marfan Syndrome. It’s not just the heart that it affects. It affects everything. I’m legally blind in my right eye, and I had no idea that was tied back to the same syndrome that affected my. Back and my knees and my wrists and my my rib cage. I mean, so many different things. And when I was diagnosed, I was only 25 and it was a fairly new, you know, discovered syndrome. I mean, it’s not mainstream. To this day, many caretakers and providers and doctors don’t even they have to go back and Google it. It’s just not something that is as mainstream as some other conditions. And when I found out the doctor that was telling me she really didn’t have amazing bedside manner, and she was just like, well, you can’t have kids. You may live till you’re 40. Good luck and pretty intense. And I was by myself because I didn’t, I didn’t know I would be receiving these, this news, and so I left pretty shell shocked. And you know, it was the beginning of a lot of you know, self work to say, Okay, I have two choices here. I can dwell in my diagnosis that was told to me by someone I barely know, or I can do my research and continue to live my life. Obviously, there were some things that needed to change immediately, and that was, you know, how I worked out, how I, you know, was stayed physical, and that was all just part of, like a checklist of do’s and don’ts. Everything outside of that, I had to figure out myself. And this was not during, you know, I didn’t have a great, you know, AI partner with me. I had to, you know, read books and and research and call different doctors to figure out, okay, well, can I have kids? And you know, a lot of them said no, because, you know, the second trimester is when your aorta heart really expands, and even before then, and depending on, like, your body, and so if I was to dilate that part of my heart, I would have a massive heart attack. And so I did not think I could have kids, and I was dating my now husband, and he was so incredibly supportive. And I think that is a huge part of why the ride itself was easier because of my partner and we went to so many different doctors together. We weren’t engaged, we were not family planning, but he knew I needed that to move forward, because I needed information, and I I kind of accepted the fact that okay, I won’t have kids, that’s okay, that’s not in my cards. So I got to that place, and five years later, or two years later, we were married. We actually got married, and then we started living our lives together. We traveled all over the world. We were like, This is amazing. I mean, okay, we might not have kids, but we’re going to have all of these memories, and we weren’t sure if we wanted to adopt or anything in the future. We were still so young. But then I I got pregnant when I was 30, and it was a surprise, and I went to the doctor and I said, you know, how do I have to make a really hard decision today? And I had been keeping up with my cardio appointments, and they were like, your heart looks amazing. I think we should try to get you through this pregnancy. And that was the that was a shock, right? Like, I did not think able to carry my own baby or even have a child. And so I was high risk, even at, you know, 30 years old, I was a high risk, very I saw the doctor one to two days a week. So there were a lot of appointments, a lot of testing, and I made it through the pregnancy. And it was such a success that I just, I think, the universe around me. I mean, who knew that it was possible, but it’s because I truly did. I just said, why not, and that’s kind of in my motto over the years, why not. So I’m going to pause there, because I know you have

Manon Bolliger  14:17

no no I’m listening very attentively, but so why not? But before the why not, you were you were really doing an information search and as unbiased as possible. In other words, anything to give you more insight and your your focus, if I’m getting this right. Was self care. How do I manage this? You know, the best so I can have the best life possible.

Stacy Scarsella  14:50

Well, and I think that’s what’s so incredibly important. When you receive any health news that may not be positive, you have to take a. Breath and say, Okay, well, the sun will come up tomorrow. I’m still alive. What can I do with my time and be an advocate for yourself? That is the biggest thing that I’ve seen throughout my years. You know, even with other friends that have had very hard, you know, diagnosis cancer, MS, like different types of ailments, and you really do have to do your own research. I mean, the doctors are only they’re only going to share so much information because they do not have the time to spend with you and their 1000s of other, you know, all of the other people that need help. And so just having that information and in front of you, that information in front of you gives you the tools you need to decide what to do next. You know, what is your next step? I mean, and this is something I tell my kids and I live by, how can I focus on right now and one minute forward, that’s it. That’s all you can do when you’re really stuck in confusion or you know, or or just going through sadness because you’re you’re grieving a side of your life that is gone right because now you have this new information and you have something that you have something that you have to deal with and and I think that’s really powerful to just say, okay, what can I do right now? Me, that’s it.

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Stacy Scarsella  17:42

what nobody else included. How do I move the needle? How do I move forward? Because you have two choices. You can stay where you are, or you take the step forward into whatever direction you’re going, but you at least move right.

Manon Bolliger  17:58

Yeah, no, it’s, I think that is the key I was. It made me think back a little bit to so I used to have, I used to be very, very skinny, which is has changed over the years, but my hips were very narrow. And at the time, I was in in Montreal, and I went to an obstetrician, and they said, Oh no, you’re going to need a cesarean. There’s no way that a baby can get through because I was pregnant and get through hips like that. So I went. I didn’t give up. I went because I thought, like, this is ridiculous. Have they never gone to Japan or China, or like any other country, I just thought, this is I, you know, sure, I’m skinny, but I’m not that skinny, you know. Like, there’s something wrong here, you know. So I went to eight different people, and I basically got the same one opinion and, and that kind of woke me up. It’s like, Gee, you know, it’s like, fashion. You know, if it’s mini skirt time and you ask what to wear, they’ll say a mini skirt. But when it’s just above the knees or just below the knees, that’s what you’re going to be told to wear, right? And I saw sort of medical procedures and advice in the similar way, right? Because it’s wasn’t the time. It was the fashion to have Cesareans anyways, though I didn’t want one, and I didn’t feel like a natural body needed to do that. That’s an emergency measure, right? So, of course, I had a home, you know, birth. I had vaginal everything was fine, and I got a midwife. I mean, a lot of decisions were made because of the small mindedness or the fashion at the time, right? So I, you know, I shifted, just like when you’re saying later, you know, you went to another doctor many years later, and they’re looking at a. A new reality is like, wait a minute, this heart is looking really good. Why don’t we try, you know? And it’s like, it changes, right? Like it

Stacy Scarsella  20:09

really does. And I had to create. I had another one. I mean, I’m blessed with two beautiful sons. And yes, the second pregnancy was hard, and it was a reason. We were like, Okay, we tested, you know, we further. We definitely had a very stressful pregnancy. And you know, both of us are lucky to be alive, you know, my son and myself, but we did. We made it right. And it’s also knowing when to cut your losses right. You might, you might be like, Okay, I’m going to go research and find out what I need to do, but also give yourself grace to accept that you might not be the exact same as the person sitting next to you, right? Because you have this different type of body that’s diagnosed the way it’s diagnosed and and I love your story, because I think that’s, that’s it. You know, if there, if you when there’s a will, there’s a way, right? And when I first find found out, I was a bit I worked out every day. I was very active. I was, you know, I played college basketball, so I wanted to continue staying active, and I didn’t know what else to do. And there was a cardio dance class that was being offered at my gym. And I always thought those were the people that just don’t they’re not athletes, right? They’re just, like, in there, just dancing around the little aerobics movement. And I took my first Zumba class, and this was in 2006 so it wasn’t like, a a big wasn’t really a big deal yet, yeah, and I loved it, and I was able to keep my heart rate up at a stable because my my workouts had to change, right? I couldn’t do hit classes. I couldn’t do high, low intervals like before, no more burpees, no more hard, intense workouts. But that doesn’t mean I can’t get my heart rate up and keep it up for 30 minutes, 45 minutes, however long. And so I started my Zumba, and I went and decided to get certified. I took in it full head first. I’m six, three. I do not dance. I wasn’t not a dancer, and I why not. And I went and got certified to teach Zumba classes because I loved it so much. And I did that for, gosh, five or six years, until I was pregnant, and so I stopped teaching, but I kept going to classes all the way through, and just this morning, I went to a Zumba class. So I still dance, and I still love it. It’s such a great way to move your body and keep your heart rate up. But I would have never, ever, ever fallen into that class and continued that incredible, weird journey of, hey, I was a Zumba instructor on, you know, amongst itself, and it was so fun, and it just has brought so much joy to my life that, if I had never, you know, and that’s the other thing. It’s like your path is your path. And when you have these bumps in the road with your health, look at it as an opportunity to explore something that you and I know that’s hard when you’re you’re going through really, really tough news, but you know it’s you got to start somewhere, right?

Manon Bolliger  23:36

Yeah, yeah, yeah. And you get opportunities, or you get, you get to see them as opportunities, eventually,

Stacy Scarsella  23:44

eventually, yes, in the moment, it can be really

Manon Bolliger  23:47

like Zumba, oh, my God, I’m never gonna do that, you know? And then, right, yeah, very interesting. And it’s, it’s, I can, I mean, I think of all the stories I’ve heard it really is like that. The key is to to sort of stay in the moment and and take the next step. Don’t get stuck, you know, because the moment is the past. The moment it happens, right? And if you’re stuck more in the past, about what it could mean you’re, if you’re doing the coulds and the shoulds and the woods, you’re not actually actively moving the very next step, right? And I think that’s it’s very important to do, you know?

Stacy Scarsella  24:37

Well, I think it continues to change right, like after I had children, my hips, because of my condition, never pulled back in. And so I had massive, you know, I have major si issues, and my hips pop like you wouldn’t believe. I mean, it’s, it’s, you know, fascinating how your body can change and shift. Left. But with this syndrome, I have, you know, have this extra level of, you know, discomfort that I’ve that natural childbirths. So I had to revisit, right? Okay, what do I do now? And so I got into yoga bodies, and I really started to build my pelvic floor and really try to figure out, okay, this is what my body’s doing. Now. What do I do? Okay, I might not be able to run anymore like I used to, because I used to love running, and it just things change, especially as you get older. And I think that has been fascinating. Again, another pivot, and I now have this incredible yoga community that I’m part of. I’m I have a yoga event coming up on Monday. I love putting together events for other women and people that may be struggling as well with okay, what do I do now? You know, and it can feel very frustrating when you think you’ve found a solution to a health situation, and then something else goes out right, like, Oh, now your ankle is hurt, or your shoulder or and with Marfan Syndrome, it affects ligaments and tissues. So guess what? Your whole entire body is full of ligaments and tissue. Yeah, so it’s and because of my my eyesight, you know, being legally blind in my right eye, as I’m getting older and I’m losing my eyesight and my left eye, it’s not great.  It just makes me enjoy the moments even more to say, Okay, well, right now I can see, right, going to do as much as I can, and I value, I mean, gratitude. I mean, I know that’s something everybody’s talking about, right? Have a gratitude journal. Write down all the things you’re thankful for, but it is helpful. Right, focus on what you do have than what you’ve lost,

Manon Bolliger  27:03

right, right? Yeah. I mean, it changes your inner dynamic and how you perceive things in the end, right? Yeah, and that’s interesting. So one thing we didn’t talk about, I mean, there’s many things we haven’t talked about, but I’m trying to see where it was that you mentioned it, but you do work for mental health advocacy. Do you want to we have, like, a few minutes left, but I didn’t want to not talk about that. So if you could just share a little bit of what you do there.

Stacy Scarsella  27:40

Absolutely, when I was 33 and my son was barely two months old, not even I think he was five weeks old. Actually, my best friend committed suicide, and she was like a sister to me. And so not only was I going through, you know, I postpartum, and I had this newborn and I had a two year old, it was, it was a really hard time. So I was suffering just as much as some other, you know, obviously family and friends around the situation. It was a very difficult time. But through that, I realized it wasn’t isolated. There are so many people out there that are dealing with with mental health issues. And so it was an eye opening experience, and that was also the time that gave me the momentum I needed to leave corporate and start my own company, because I realized how short life was, whether you were, you know, however you your life ends. It’s short. You never get enough time. And so I wanted to do something and get out there. And then over the years, I have really seen an adolescent space. I have substituted in the schools, and I work really closely with middle schoolers, and I have an internship at the high school in our local community, and I work with kids on, you know, positivity and how to find their superpowers and how to really tap into what makes them special, because Life is hard and the real world is not kind and these kids are already struggling in school, you know, with everything going on with social media and and technology and just the speed of how we ingest information, all of that is is Just a it’s a lot, and so if somebody is already struggling with confidence issues or self worth or just even just depression, or you have some type of anxiety or stress, and those labels that are just slapped on people, they they they’re being overlooked, right? Because. They’re like, Oh, everybody has anxiety. Well, yeah, maybe. But why? You know, let’s go back to the root cause and start to figure out solutions, rather than just band aid the problem with medicine or, you know, oh, they have a diagnosis. And that is has become a huge part of why I public speak and why I help, even individuals. And you know a full adults, you know year olds that are stuck in a career and they’re unhappy. I was directly affected by someone that I care deeply for that took her own life, and she had everything on paper, right. And when you see how mental health can be so private, it’s something we we should talk about more. And, yeah, it’s a very hard topic to address and discuss, but I am, I definitely that’s that’s really what kick started my mission, and why I continue to be so so much involved and and about positivity and looking for the possibilities, and why not? Because otherwise you can get stuck. And my kids are in middle school right now, and they are going through it. Middle School is not easy, so it’s really something that’s near and dear to my heart?

Manon Bolliger  31:23

Yeah, I think it’s, I live in Canada, and we, we have very limited solutions for people, the way I see it. I mean, one of the solutions is, I don’t know if you’ve heard of this, maids, medically assisted suicide. And you know, it’s the third business, whatever you call it in in Canada, because they also do organ harvesting when people say yes. And you know, you can be depressed because you can’t pay your rent. You know it that is not a reason to get that type of assistance. So I know there’s now a lot of advocacy. They’re trying, you know, but we have a lot of censorship here in Canada, so you can’t really say things against the powers that be. So I take opportunities and little podcasts to share this so that people become aware of this because, I mean, you don’t even have to tell your parents. They don’t have to even tell your parents.

Stacy Scarsella  32:30

I think adolescent suicide, for sure, is it’s such, I mean, it’s just crazy. I mean, when I grew up, I didn’t even really, I don’t even know if I knew about what that was. And so, you know, and that’s part of the information overload that kids these days are just able to access anything, yeah, and it can be really scary, and, and my solution is direct, like, like, I picture myself as a center of a web, and who can I touch? Right? Who are the people closest to me, and then hoping that they spread the information. And it does start with a podcast, or it starts with a conversation or a phone call or a yoga event, and just talking about it, and being okay with talking about really difficult things, because you never know who you’re going to talk to, who may have more power to make your changes exactly.

Manon Bolliger  33:26

Well, that’s our time together, but I think, I think we covered quite a lot, and thank you so much for sharing your experience and knowledge.

Stacy Scarsella  33:38

Yes, thank you for having me so thoughts

Manon Bolliger  33:41

with the interview with Stacey Scarcella, my first thought is really for practitioners, people in practice, to just realize bedside manners. You know, if you go tell a person that they have syndrome, whatever it is, and make it sound like doom and gloom. If you don’t have a personality like, like this person here, you would go downhill really quickly. I mean, maybe that’s the thing, the tipping point that makes you go uphill. It’s possible too. But just to be aware of the the impact that a diagnosis can have. And sometimes, you know, when it’s not as well known as as this one is not the the thing is that when people look it up on, you know, Google or whatever, they’re not finding different information, right? There isn’t enough to to show that there’s alternative things, that there’s attitudes that can change it, that yes, you know you can have a child, but you have to look after yourself a lot of self care and a lot of heart care. Uh, you know. So there really isn’t all the information out there. It’s really, these are the symptoms. This is the diagnosis, and boy, it’s doom and gloom, and you will die by the age of 45 pretty well, that’s what they say. So it’s, you know, just be aware that even though we have now chat GPT and God knows who’s feeding that information, and we have Croc and, you know, I don’t know where all the information is gathered. Some like they know more, but others just repeat the same stuff, you know. So yeah, so just be aware of your bedside Manon, the impact of sharing something significant with your patient. If you’re a doctor or naturopathic doctor, you know it’s really, really important. And even as a boa and practitioner, look up these things if you know you’re not going to say anything, because you’re not the main thing you’re doing, you’re not diagnosing that’s not within the scope, but your attitude matters. So that’s my takeaway from this. I think the other side was well expressed. So that’s just the thought I had.

ENDING: 

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