Disabled Girls Who Lift

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E42: Rolling into Bodybuilding with Marie

January 25th 2021
On this episode, we sit down with Marie (@marie.pontini) from Canada to discuss all things multiple sclerosis, ehlers danlos syndrome, gastroparesis, and bodybuilding. Fitness and acceptance have play... More
this is disabled girls who lift. We are reclaiming what's rightfully ours one podcast at a time, it's mary beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that. A bliss comfort zone. Mhm Okay, welcome everyone to another episode of disabled girls who lift. This is Marsha on Seminole tribe land in south florida. Hey all it's mary beth in northern California on a lonely land, We've got a wonderful guest joining us today. You've probably seen her all over our instagram page. We've been a huge fan of her bad day and everything that her body is capable of. Um Marie pont Aena Montini is joining us from Montreal Canada, some of you Canadians out there probably already know her.

She's a wheelchair bodybuilder loves to promote diversity in fashion. Media loves to wear heels like many of us and is just as passionate about all things fitness industry, fashion, industry related like us. So we're so excited to have you Marie, welcome, thank you very much for having me guys. Very appreciated. Yeah, of course, and I do want to take this moment to say because some people think we have like some sort of extensive application or selection process, like we're just people, Right? So if we see other people that look like cool people were just like, let's talk and if that doesn't happen to be you today. It doesn't mean we don't like you. It just means we didn't send you a message, Send us a message like it's cool. It's not that big of a deal with. Just people Marie, I feel like we've just known and followed for over a year now for such a long time and it's our first time actually like talking to you.

Exactly, pretty much. Yeah, I really appreciate because I've been following you a lot too. And uh, you know, it's, I like the way that it's just a community and on the same vibes. So it's, it's been exactly. I think that you might have been one of the first people to start using our hashtag. I think it goes like that true. I think it might have been that really bring people together, man. It really works. It's really amazing. Um, so what did you, what did you do first? Body building or just fitness in general? How does one become a bodybuilder? Where does that come from? Um, a lot of stuff happened at the same time or pretty much, but um, I think I just started to train uh, when I started to be more disabled than I could not work. I mean, I was working out before, but I was £300 and I was just doing that like twice a week to release, the it's really the stress, you know, like after work, if you're frustrated and you do, you work out not in a way that I really like, I loved it or that I was addicted to it.

You know, it was just doing my job and that's it. Um, so when I became disabled more and I had to leave my job, it became like a kind of a full time thing and I have a lot of chronic pain and this whole pain. So it's, it was really a big challenge at the beginning, but I decided after like about six months doing it, I decided that I would use that to fight the pain of my body and really use it as a way to put all my ambition, you know, before I was a business owner, I was director. So for me it was all about my career. So it was a way to really put my uh my ambitions there and gradually honestly just became more and more passion. You know, I was going every morning at 60, I'm going to the gym and so that it's so much that came at the same time, you know, you start to see the games, you start to see the results.

This is already like, oh my gosh! Really? Um I started losing a lot of weight, not because of that, but because of gas surprises, but still I would see even more my muscles, it was even more like rewarding and as my body was transforming, it was a way to adapt and get used to it and love my body. And also as my, my abilities were decreasing because my disability were getting worse and worse. It was a way to accept the disability and learn to see the limit when you can still push and when that's enough, your body tells you that that that's the limit. You know? So a lot of respect about my own body. That that's how it started basically. That's big. So did something happen? Did you have like a big sick or were you just always something was there? And it's just this is how you know it's just gonna get progressive and over time time just caught up with you.

It was since a long time but in It wasn't to 16 that really everything started to drop radically. My health had a big m. s. relapse and a lot of cognitive impairments so that that's really more deal nest that kicked in at its worst. So. Mhm. And so you mentioned your business owner before, you weren't really paying attention to yourself or your body. It was all business. So I'm wondering And working out was your stress relief where you like pushing it a little too hard in the work area and then not really taking care of Marie or it was is your M. S. Does whatever the M. S. Wants to do because I know some people it's very it's very like if I'm stressed boom. Here it is. I didn't know I had a mess before I was £200. But not because I wasn't taking care of my body. It was really because of the illness. Um So when I'm really sorry I forgot the question.

That's part of the deal. That's All right. So I'm just asking, where did you always have a condition or was this 2006 thing? Like boom, big sick, what the heck is going on? Yeah. Yeah. It was pretty much that because the condition degraded in a year. So from walking being fine to going in a wheelchair within a year, so the cane walker and yeah, so it was so much adaptation that I just accepted whatever is coming, it's coming, that's what it is. That's a deal, you know? But after like, I didn't have stability for a lot of years after that, but still uh I would say like six months into that, I started to be like, okay, that's my deal. So whatever, you know, like it's uh that's really when I started doing the bodybuilding because the pain was the biggest part of it. And even though, I mean it was not, I mean it was behind us when I work out, it doesn't stop the pain.

It makes it even worse. Yes. But on long term or afterwards, um after the big soreness, let's say it's a it feels good my body feels better. Um And also all the results that gave me like uh if you have the good abs it's easier to transfer with the wheelchair and then you're able to do this or do that just because reinforce your muscles. It was it was amazing to see. So a lot of motivation came from that your body just quickly adapted. Like that's a pretty fast turnaround to and a lot, I mean I think you're huge two on just adapting in general with different mobility and we see that on your page. How how did you learn? Like did you just experiment like the rest of us? Did you have a coach or some sort of pt where all these ideas? I know, I think it comes from stubbornness. I need to do this.

I have to be able to do this. I very honestly, I know the guys, I was so cool for that. I missed a lot of Covid, but every time I would get in front of the machine and I'd be like, okay, how am I gonna get up there or you know, like to get on the machine, you know, like just think about the pulls out, let's say um how am I going to get up the stairs and do that? You know? So I would look at it and I would ask the guys and do you have any idea how we get there and how to do it or you know, and it was a work that I don't know, I liked it. You know, it's finding solutions being on the solution mode and that's the way that I just find ways and more and more because like you said, I had to adapt really quickly. Uh one day I could lift and then the next day I cannot hold anything in my hands. How am I going to continue to hold the dumbbells? Let's say if I can't, I don't have any strength in my hands. So to find equipment that exists without, even though there's not a lot, but still there is and the rest was just uh looking always as a solution how to be able to do it.

Yeah. And it still is right now too with the covid I had to adapt everything home and that's it. Yeah, I think it's it's a mentality that helps in every way is, you know, just to face what reality is and then okay, what now, what am I going to do with it now and finding solutions? Because I think fighting the reality itself. Yeah. Help to bring any solution, you know? So that's a tough part. And did you get to that all by yourself or do you kind of have some support family friends, kind of helping you through that? Because I think that's where a lot of us waste a lot of time, it's just like, okay, this is it, this is the reality and that's okay. There are things I can still do. But that sentence is not easy. Do you have someone that was helping you or you got there on your room? I think that's my advantage. I was on my own. I didn't have friends, I didn't have family boyfriend or anything. So, uh, when I was in the hospital to be diagnosed, I read all the books about it because I, we were pretty sure that that's what was gonna come to.

And so I read a lot about um s and everything and I realized what the point that was coming back all the time. It was about accepting it, that people have a hard time to accept it. And then it generates, it makes it worse basically. So I told myself, okay, I have a month. I'm giving myself one month to accept it to go through it and find solutions and that's it. And and it's a good thing. I mean, I just really went through it and about two weeks, uh, just figuring out, okay. If you get worse, if I end up in a wheelchair, what if, you know, like sing it the worst and what am I gonna do? Okay, I can figure it. Okay, fine. Let's do it now. You know? Of course it doesn't happen the way you figure it. But still, I mean, I think once you accept that this is the reality, this is my deal. That's what I have to deal with it. Even if it gets worse. That's my deal. That's normal. That's part of the bill. Okay. You know, um, if I would have a family. So I look at some friends to explain to me because after that I was like, oh, good for you. You have family to support you. And they were like, not necessarily because the family, they don't want to see you get worse.

They want to encourage you. They don't want to be they have their own expectations. So they don't want to be too disappointed. Uh It makes a pressure because the person who has the disability won't be willing to necessarily tell the truth to their family. They don't want to disappoint them or worry them. But there's also the pressure on the other side. So I didn't have to deal with any of that. I didn't have no one that had to accept my stuff. No, it's me with myself in that sense. So I think it was easier. Yeah. No, that makes a lot of sense because you have expectations, right? Like it's all about perception as you perceive, like this is my reality, this is it. But then if you live with someone and their picture of you does not match that it's going to clash, something's going to happen. And very not in a good way. And just you have you giving yourself a timeline with no other, like, nobody else's expectations. Just your own your own goals, your own motivations. And that's just so impressive.

It was the the easy part, you know, because at first I saw a mess as a disability only regarding the physical And about six months from that. Yeah. About six months from that. I had a bigger mess relapse. And the main uh impairment that brought that it brought were cognitive impairment. And this is only like 10% of people with him is that have so much severe cognitive impairment. Um We go to the way being able to talk, being able to say words pronounced with the jaw. Um I it went down really quickly really badly, but when I realized, I don't even have my brain to think, you know, because at first I thought, okay, well I can be in a wheelchair and still go to work, so fine, I'm fine for the work. But then six months later you realize I don't have a brain anymore. I can't think straight. I don't even know what I'm doing here. I was talking with customers and five seconds after it was like, what did they want?

You know, I kept helping people like that. So, uh I realized that I would have to stop working. I would have to put the career on the line and everything like, so that's, you know, like sometimes they say when uh when the man plans God laughs, it felt a little bit like that, you know, like I was okay. I figured out everything I'm fine. And then boom, the other thing it didn't talk about, that's the one that hits you, you know? So I had to continue to think that way all the time as it was getting worse. You know? I always said I'll never have someone take care of me for my uh like uh to wash myself or body cares you know? And then you have to have someone at home that gives you care that helps you to eat that helps you to do everything. It's a lot of pride, you know? It's a lot plaque said so definitely. Maybe it's a good thing that everything went fast. Yeah that's well and I mean do they even say which one you have?

Cause there's different kinds of M. S. Right? There's the kind where it's just gonna something will happen every couple years or like you'll get a big sick then you're good. I know there's there's a couple kinds. I was diagnosed with the relapsing remitting a mess. But um yeah about six months after that they said I was already in progressive because it was getting worse but also the fact that you know usually when it affects the cognitive that much it's usually at the end so for them it was like okay you you're already down in the end, you know? So um that that's why they were considering it was already in progressive and there was no hope of remission and after I started bodybuilding about a year after my condition just kept getting better and better and better and as of today it still keeps getting better. So it's um of course my neurologist now has to review all his stuff because he's like wow that must be your your enthusiasm or your attitude that helps, but he knows that the very building has a lot to do with it too, you know?

Um So that for me that's really uh I'm encouraging, you know, like I realized that I have recuperated almost 20% of where I was in 217. So it's uh of course, I mean, you know, you know that it's part of the illness, it is the generated and you can all right, it can go down at any day, you can start a relapse tomorrow and not being able to do what you used to do. It's part of it. But still I enjoy every day that I can do all my stuff, I'm completely out and um now I don't have services um at home I do everything by myself. I can walk, I walk completely at home unless I have too much pain of course. Um and I'm sorry, and last summer I ran twice outside. No coming up with that one was everything until you said the run.

I was like, yeah, that's right, girl, Whoa! What? I was like, that's More than, you know, you know, five, I ran for almost 10 years before that. So running about something new, completely serious, wow. Yeah. And I think the most fulfilling part that I think like if I were your in your position is just everything that you've experimented with and the successes that came out of it. There's so much more success in everything that you've adapted in. And I mean that's just trusting in the process, right? And then you said how you've, like grown to accept this quote unquote disability that's turned into pride and that's all that we're seeing. We're not seeing the struggle, but it's, it's so nice to hear all of it because you've come such a long way. Thank you. It's true that I don't try to hide the struggle. I'm always honest with people when they ask me yet, but don't you have pain after working out or yes, I have a lot of pain.

I cannot even say what it means. The pain. Um, yes, when I work out, like really drilling my workouts, I, that's all I can do for the whole day. You know, it takes a lot of investment, a lot of sacrifices. Um, but like you said, the rewards that come with it, uh, with the so much, I mean, I would say if you give it a chance, you have an idea, you want to do something, give it a chance and keep going because like the rewards that come from it, even if you don't succeed, man, it's, it's unbelievable. It's so worth. Worth it. You know, it's so interesting because this like old boys club of these doctors telling you what works and what doesn't and they have no idea. And you're like, you know what I'm going to try this out. I'll let you know, like, that's not an uncommon story. That's not something we're hearing all the time. Like, oh, well the doctor told me I'd never dance again, or the doctor told me I could never do this again, and they told me I should just give up on that.

It's like, clearly they don't know what's up. That's very true. I think they go with the average and the average um ambition are willing to push the limit or to go to see further than one. They give you like, they give you a diagnosis and a lot of people, they stop it right there, you know, they don't try to go further. Like I have Arizona's syndrome and it's it's uh I have a perm ability. Um it's a problem with the uh connective tissue, thank you very much. Uh because of that, there can be like a lot of dislocations or stuff like that. So right away. Um I have that my my specialist that told me that this is something you're gonna have to stop and no, I'm sorry, I'm not gonna stop bodybuilding. And I showed him now, he saw it because like, I I had a lot of pain in my neck which a lot of people with idiots have because our muscles are not strong enough to support it and it's the the attendants that holds the neck that takes all the the pain basically.

So I just started reinforcing my neck and a lot a lot at the beginning and same thing with all the muscles that you know that there are secondary muscles that can make the movement go worse or hurt yourself, let's say. So I reinforced all those little muscles and after that there's a lot of places like my neck, I never have pain in the neck anymore. So even on the daily even not working out all the stuff that I improved all the Mosul, the body parts that I've improved with, it helps my downloads also, you know. Um So it makes a lot of advantage like you know like you when you work out, I did a lot of work out with the mirrors because I was not able with a mess, I was not able to connect my body with my brain so I could not tell my leg to go up or the arm to do whatever movement. Um So that connection for me made a big difference.

I'm pretty sure that it's part of uh the improvement. I think it forced my brain to find other ways to connect with my body parts. But after a while it's the same, it's even now there's some uh part of that, I don't feel, let's say I'm gonna work it and work it and work it and over time I'm really able to talk to that body part and on the daily I can do a movement that usually I wouldn't because I've developed that. So I think our brain can do a lot even with the the generators stuff, you know, we can can find ways the way you train your brain to like like its own muscle, right? You're you're kind of trying to give it back. It's it's memory that it used to have and it's probably stronger now more than ever to be honest. And I love that like the reflections help recording yourself, help so that you can see something you didn't see two days ago. That's the part to me that's so disappointing as a physical therapist because it's like these are obvious things that we can do is like okay, your brain doesn't have it.

All right, we could try these external things outside of your brain to figure it out. But yet somehow a doctor is still like, nah impossible. We need more doctors actually know sickness though. Yeah, they don't know anything and it's like okay if you don't know anything about the gym fine bro. But at least you can know that there's such a thing as physical therapy and somebody out there is exercising so exercise in some form must work right? Like they just and the things that they say have they told you like those silly like oh well you shouldn't live weights but try swimming. You know like that kind of what swimming is hard. What are you talking about? Very true and they tell that to a lot of people with them is not to work out now that the mentality is starting to change their honest, but 10 years ago they would tell people within this not to work out and you know, like in Montreal, I'm the second person that we know that I like, it's still a small group of people, you know, let's be honest.

But uh that got better that way. You know, uh that friend, he he was getting help to eat, he was getting help for everything at home, He couldn't move of his wheelchair, he had transferred everything and he did bodybuilding too. And now he walks every day. Yes, he has his wheelchair because you know, we get tired a lot and everything like any person with a mess, but he's able to walk at home, he has his own independence autonomy, you know, So it would be nice if doctors would investigate it more to see the results. Uh like I say sometimes the thing that bothers me though is that they don't insist enough on real bodybuilding. I'm not talking about just little fitness. You do your little uh workout, I don't want to say girls, but like fitness inspiration. Yeah. You know, makeup and you know, now this is that this is not bodybuilding for me, this is girls fitness kind of, but I mean you guys probably have that call it here, they call it fits go here fitness, inspiration.

Yeah, exactly. But real bodybuilding where you really do the job and you feel the thing and you know like I think that's helped make the big difference I think, but you know, are there other things that you've tried um that didn't stick as well as body building and the weights or is that the first thing you tried and that was it, that that is it. I mean I I tried not that I really tried, I went swimming a little bit with my friend because she has a mess too and she does a lot of sports, she does boxing, uh swimming pool, but a lot of swimming for like real intense, that's just just like picking a but but uh yes, I went with her, I'm not a fan of the swimming pool. Part of it is because I cannot put my head in the water because my ears are having problems but I'm not passionate about it, the boxing, I may be there for her, but for myself it's not the fashion also. Yeah, I didn't uh work but no, that's I don't know, I really stick with it.

I started going to the competition just to see what would be the people there and how he survived, you know, and I told myself, okay, even if you don't like it, you still continue doing your bodybuilding competition is another but I felt in love with that, you know and then I did a presentation as a guest poster, uh Naga Falls in Canada and it was amazing the feeling of the competition, the preparation before the competition and everything that is involved. And then you see the people there how they don't know they, the way I felt is that they don't see the end cap, they just see the person they do, they see the job that you did, they see your muscles, they respected, you know? So it's uh that's really when this was really like a fashion after that, you know, I Just got the jails ready 20, for your next bodybuilding competition.

I'm looking forward. Was that like an open for all ages and sizes and abilities are a specific kind of show. It was a regular show. Uh pro and amateur Amma to but uh there was no wheelchair by the building um category, it was just regular people. So I was just a guest poster. Okay. Covid aside there should, there was supposed to be, there is one competition in Canada that does wheelchair and they give a lot for the athletes to really make it work and it's unbelievable. Uh the TNT Mosul uh pro show, so it's usually around june july So I'm going to miss it this year again but in 20, and there's more Ages are the ages separate, I don't know like tons about bodybuilding, but the ages are separate also like if there was teens or like 70 year olds is the same event or do they just totally separate age groups?

It's the same event. It's just that it's different category. And not every event holds all the categories, but for wheelchair, that's the part that I don't really like for wheelchair, there's no category. So in the States right now, it's still men's only uh in Canada, there's a few that have wheelchair, but most of the time in Canada, it's men and women. Uh, and in the States, there are a few that are not official that except at the women's category, if you ask them, you know, but still within women, there is no difference. So for the regular people, let's say buddy about people, uh, there would be a different regarding the shape, the hate of the person and then there's a different categories. So you have, let's say physique where the person has a really big muscle compared to figure where the person looks like a big any model, you know, which is completely different. So, um, with wheelchair, we don't have that.

It's just a wheelchair boat. How do you think that? I think that's totally different. How do you figure figure has like a routine to write isn't figure like they like do whatever, like dance or they twirl or whatever they choose. No, that's m Yeah, but every category has um has a different routine. Absolutely you're right with wheelchair, the, you know, like Canada when they started it, they went with what they do in the state. So in the state is the men's category and the men's used to wear pence and running shoes. So they decided that it would be the same for women and I can understand that maybe with some disability for them it's easier but I would have liked the right to be able to wear my heels still in my wheelchair to look like women on the figure. She still have heels.

Why can't I? I know it sounds stupid but it makes a big difference about the femininity of what you look like and what you do on saying compared to having jogging pants and running. The whole thing is about the look. So yeah it doesn't it doesn't sound stupid thank you. However you want to know how you should be able to look on that. I still, well I still can't get over there. They put the physique together with like everybody else. You know it's completely different body mass is right, totally different. I think right now they just judge, you know like uh you did your bags. I know there's another organization that is not word world recognized, you cannot become like a pro athlete but they still is the P. C. A. And they still open to have disability have a category at every day show it's visibility. So disability you have someone that cannot use one arm, someone that cannot use so you develop what you can develop and we're gonna judge you on that body part, that's it but if you can only develop one arm but well we're gonna judge you on that one arm.

I feel that it makes more sense. But in the States what they want to do right now they just when there's gonna be more people participating and being involved in a more participants. You know that competed competitors, it will be easier to start to have categories like disability or illness and maybe um spinal cord injuries because I know it's not better condition but they don't have the fatigue or the pain or all the stuff you have when you are chronically hill, you know, so it's they have the same strength let's say sometimes it depends. Of course it depends but so it's uh maybe eventually it's gonna get how the wheelchair because there's an organization called wheelchair bodybuilding but they're separate though They are but they are the one who work to make it happen in the in the real associations. So they've been doing that for men at least 15 years working and pushing to have it accepted with the real um recognition as an athlete.

Word wild. So they made it that but right now it's only men uh last uh Olympia in december they gave for the first women um as a professional pro card. So she is recognized as a pro card but she was not competing, she was just on as a guest poster again, it was her 3rd, 4th time as a guest poster. Um but this time they decided to give her a pro card but it was not a competition. I don't know her name. She yeah, she was not on a competition. If they really opened it as a competition, you might have been much different, wow, thank you. I don't know that. All I see from the outside is I saw a wheelchair bodybuilding and every once in a while see on instagram like mr Olympia or whatever and it's a person in a wheelchair and I'm like, okay, cool. I guess they caught up. Not really. Huh? They are uh with with the the wheelchair bodybuilding, there's a lot of discrimination regarding what kind of illness you have if you can stand.

They don't really judge you even though if you cannot want you cannot do anything but you can stand. They don't see you as as and the cat as someone with spinal cord injury uh it's much more popular to have spinal cord injury and will share body building right now if you have an illness really, they don't like you, wow. Because the only disability they see is the wheelchair symbol, right? They don't see any other disabilities. Yeah, they feel more that it's just uh the legs that don't work and the rest is fine, that's wild. 20 20 man. So I think I get exactly what you mean. So that you know, like if you see, I don't know a veteran like, wow, he's a hero. Great. And then you see he's like beefy and bulky and you're like, whoa, all right, cheer him on. But then you show them somebody like that doesn't look like that, but it's doing just as much work and you're like, oh well, you know, she has fibromyalgia there. They're not gonna be as excited from facing.

Exactly. It's really they're not they're not going to be as excited and it's all it is. It's about like the visual, it's obviously visual and they can see it, which sucks. Like I was asked to ah For a competition that should have happened in 2020. I was asked to remain in my wheelchair for my routine. Uh even though, let's say I could just twist on the side to do the movement to show better my back because my powered wheelchair has a higher back. So I wanted to turn on the left from the wheelchair. They say no, no, no. You know what, you're moving too good. The exact kind of thing. Like it's all that, it's all or nothing. Yeah, but at least they open to bring people and you know, like in Canada, I find it good for that. You know, like they try and they try not to cut you completely, you know, they're still gonna welcome you part of the deal and we'll see, we don't really know what to do with you, but at least you're going to be on stage and we're gonna say hi, you know, like, you got your foot in the door, at least that's farther and farther than you get your wheels in the door.

Anyways, that's harder than a lot of us have guns. So, I mean, uh, the willingness to do it is there is just, I think they are uncomfortable with it and they don't really know which I agree, but I'm sure there would be a way to do it, but they don't really know how to evaluate you when there's illness involved, you know? Yeah, somebody has to set that up what she said, because at least it's like a clear, like, you know, what you're describing is like a clear disconnect, like they can't see, like they understand spinal cord legs don't work. All right, bicep curls, I get it done. You know, like, that makes sense to them. Amputee you're missing an arm. Everything else works okay. Done the chronic illness, what is it? I don't really get it, you know, At least I can't see it. I can't, I don't understand it, But here, it's just like, no, like, the whole conversation didn't even happen, just very honest.

I hear a lot of people from the state, especially, I know what happened to myself, even in Canada and Quebec, even though we're really open minded apparently, but that they cannot even get in a gym, no discrimination that you just tell you like, uh, no, no, we're not gonna open the door for you. They don't want, yeah. They say either that for their insurance, but you're not necessarily more at risk at anyone just because you're using a wheelchair and you know what you're doing, maybe maybe more than the gut is working at the best of the best and the entrance, you know, uh, where I go, I like the fact that it's completely a little technique and every age category, every look. So there is no judgment there, you know, at all. There's no place for judgment there. It's a big chain of jim in Quebec. But still, that's specific journal is really amazing for that. So I know that we were approximately six wheelchair users to go to that gym.

Uh, so it feels good because you're just like normal. Of course people stare at you, but that's part of the deal, whatever. You know, But at least you're welcome there and people are going to encourage you and blah blah. You know, So it's a yeah. But for the fact that really, sometimes you have to fight to just enter in a gym. That's uh, that's a weird part. That's the part that I don't get. It is very strange. And you have to fight to, hey, I want to come to this competition. It's just basically, no, nope. You're dangerous, nope. So in Canada though, are there any discrimination protections or laws kind of like how we have the 88 over here. Like if somebody doesn't let you into a gym and you're willing to pay for your membership, whatever, you know, do you have the right to sue them? Not how does it work? But you can make a complaint at the protection of the consumers and you know, you make complaints but isn't going to mean that you're really gonna go incurred for that?

I know, you know, go somewhere else. That's it. So that's what they're gonna tell me. Yeah, there there there there is, I mean it exists as law, they're supposed to Yeah. The same way that they're supposed to make any new building accessible. But the reality is about 10% real. So pretty much the same as in your as in the States, honestly. Yeah, we have A D. A. But how many comply? Yeah, you can't pick up the phone and call them. So yeah, it doesn't it doesn't exactly work out. But I know as a society, I think it's taken it's being taken a lot more seriously. So I mean just you're right like getting more of us just in front of the media is going to help with that conversation and with those business owners. Very true. Even on that stage competing. Yeah and people get used to see someone that is different and that it's normal kind of, you know, it becomes a different normalcy?

Um it's all a bit like the heels, you know, like you mentioned at the beginning Uh huh. For me it feels the first time I wore heels on my wheelchair. Um I first asked a friend that has a met that's been in a wheelchair, like for like 25 years and she was like, yeah, when I was young, I was wearing heels. Okay, so that's okay. But then the first time someone talk to me about it when I wore them, it was someone in a wheelchair that told me, why do you wear heels? They're in a wheelchair? Well, exactly. The point I'm in a wheelchair. Do you walk? No, I don't either problem seriously, you know, of course to get to the wheelchair or to get off the wheelchair. I have my flats that are waiting for me next to, you know, like when I get off my wheelchair, but I don't sit in possibility of it.

You know, I don't see how I used to a big stigma within the community uh from disabled people, like, you shouldn't look good, you shouldn't have heels. Um They look at you really weird. Um That's a that's an interesting uh way to see things that uh first shocked me. Uh there's a lot of other women, sometimes they don't appreciate that you currently have more self esteem that they have on their own. Uh but you're in a wheelchair. So how do you they're thinking something about yourself, stay in your lane. People like help some really like stupid things. But once you realize like you don't take things personally. Like you realize like that has nothing to do with me. Um I'm amazing and you have to figure out that you're amazing too. It has nothing to do with me. Like you gotta work your ship. That's how you get there.

Like don't get but for now like let me feel beautiful and it's tough. There's a lot, there's a lot of and it's hard to find a place because like you're okay here I am. I'm disabled now. I guess I'll have some disabled friends and then you're like, wait, what's going on here? So I haven't seen. I definitely get what you mean. But I haven't seen that personally. The big like discrimination I've seen as self diagnosis. So people that will talk to someone and say like for example, I've never formally been diagnosed with E. D. S, Right? But I went to school for seven years and I know everything that it's supposed to be. And I'm like, I know I got that. But there are people online. People like, well you didn't you didn't get to a doctor. I spent 10 years chasing doctors. You don't have it. I have, you know like that's that's an argument. Yeah. That's true. Yeah. But why are you doing about this and even worse here in Quebec because in Quebec we have the health care system that is free for everyone, but it's also media darker.

So, um but it's free. So the doctors, if let's say they see that you probably have it. Yes, they're not gonna do the test or the test for the diagnosis because anywhere there's nothing they can do about it. Yeah. So what's the difference? Exactly? So if they see that, that could be dangerous. But it's something that we can't do anything about. They're not gonna diagnose you. You're gonna have to push a lot to get a diagnosis because doing the test cost money. So no, any way we can do nothing about it. So you're on your own, you know? Um It's something that is really sad, like with you go to the uh to the hospitals and all our hospitals right now or owned by the university because they don't have enough money. So its students hospitals basically, you know, like that. So you have to meet with the students first and then with the doctor. And then that creates a big problem because the students is googling your own symptoms that you're telling him.

I've been on that page on the website. I know I'm telling you exactly what I'm gonna be. I got my wife's prescription on something I didn't have. It was on my boyfriend. He didn't want to go to the doctor. I gave him the list of the symptoms that I found on the internet. He gave me the cream. Thank you. Bye. It's one of my, oh my God yeah that's the medicine now. So diagnosing ourself. Unfortunately with rare illnesses that's that's often the only way we have you know to find answers and help and ways to cope or deal with the symptoms. Yeah I mean the only reason I'd see it like for your personal benefit is if you needed to show proof to your employer you need insurance you need accommodations and you have to have the paper. Let's like see. Yeah the doctor said so even though he had a google this too.

Yeah but it's true within the community there's some taboo and some discrimination. Yeah that's very true. Yeah. Pretty ridiculous. You mentioned way earlier that you deal with gastro paralysis. Is that new with M. S. Or you already had that with the E. D. S. Um I had it but not the same way it's just actually I had it but it got really worse and that's when I finally got diagnosed. Uh But this was still after I got diagnosed with idiots. So it it took a lot of time basically. Um And yeah basically they find it out when it got so bad that It was either this or I was becoming anorexic or I don't know you know so I lost £165 in a year. So it was time that they find out what it is. And again that's that was the same thing and you know, they left me on my own. You have that surprises.

Okay, I'll have a good day. So I have to look a lot to find like, first of all why or what could help. And I mean how do you live? You know, like that's your priority to stay alive. Yeah. And they just even like I saw my guest room I just even a month ago, you know? And because they have no answers or I think they believe they have no answers. Um they just leave you on your own and I keep telling him yeah, but I've been eating chicken and eggs for exactly two years. And because lately I couldn't support it. So since since the summer About May to 20 I could anything I would eat, I was making terrible um symptoms, everything at the worst. And even water was making it painful. And I kept telling my doctor yeah, but I just can't do it anymore. I can't eat anymore, This is too much.

And he was like, yeah, but you're absorption level of nutrients is fine, so you're fine, there's no panic. So I had to go to a long waiting to at the point where I just stopped eating and I told my nutrition is like, look, I can't eat anymore. You know, I could but I couldn't support the symptoms anymore. It was way too much. So finally what we had to do so much pressure. And as an emergency, about four months later that I finally got the prescription to be able to have the elemental nutrition. Uh my mom five and X. It's a terrible tasting uh its nutrients that were pre digested. So it's easier for your body to absorb it. But you eat only that and water. And the goal is to do that for 60 days. Um to hope that it's going to kind of reset your bacteria uh for the gusts called again elemental nutrition and survive on X.

Been nestle five and X plus. Uh So now I might be 49 today, 49 days of water. And it's terrible. But I mean 10 days left. It's good. I mean, yeah, but the symptoms are I mean you're not in pain, you are getting your nutrients in. But are you starving? Like that's Yeah. Uh that's nothing different from any body builders. So you're fine. Very and you're ready for a competition. Yeah, it feels exactly like that. Honestly. I mean, I've lost a lot of all my water, all my muscles, you know? But ah Just because it's like with the date of expiration like 60 days to do it. I had to mind myself also in advance. You know, like no food in the apartment and really like this is a decision a little bit like when I accepted a mess and then go let's do it and I'm not scented.

I'm not hungry, I don't have any symptoms. I'm not bloated. I don't have pain man. It's a priority ice. It's just that I'm supposed to take seven facts per day and I'm only able to take one hardly. So now my nutritionist is going crazy and it's worried because it's not good. Uh Yeah, exactly. But um so I had blood test last week. I hope they're gonna let me finish the 10 days. Um but yeah, I think uh otherwise yeah, it feels good, you know, it feels like uh I made it for myself. It was kind of a gift for myself to help my health. And uh but to see the fight that I had to go through with the doctor even though he would see and know that I can't eat. It's something, you know, because basically they just let you go home and that's a lot of energy. You have to spend convincing someone. Yeah, I know.

But I mean on the daily, what am I gonna do? What you can Yeah, but I can't feed. Yeah, but I mean, don't you? I mean, no, you have to be you have to like spell it out. Like you have to hold them by the face, grab him by the call. I'm gonna die. Oh, that's all right. Let's talk a big argument and thanks God it was over phone. There was no lord appointment. And it's a good thing that it was a phone call appointment. But I got really mad at him at some point. I just screamed at hill at him and like I told him everything and then uh he was like okay, I apologize. And then that's when he gave me a real appointment in person and gave me the prescription a month after. But still, you know, but but I think sometimes it's necessary to make them understand this is my life. You it's your job. Why do we hang up? You're fine, you're going home and you're funny.

Huh? But me it's my life, you know, just when we have surgeries sometimes or winning hospital and they treat us like something like, you know, like nobody and they do stuff that have that may have huge consequences on our life for the rest of our days. But for them it's just a little thing and it's their job. And then they're gone for the for the shift. You know, I try to remind them sometimes in the health care. But yeah, you're supposed to care guys. This is a reminder, casual reminder. You're supposed to care in health care. But it's it's a management at a lot of levels, you know, like the hospital, a hospital are not set for handicapped people. How is that normal? How you have bathrooms accessible, but without the push button, how you if you have a surgery, how there's nowhere to put the wheelchair if you're hospitalized in in the surgery, let's say or you know, they have nowhere to put your wheelchair in case.

Uh It's weird. It's weird the way that the system is made. But I like the way that social media helps to bring reality to the people and they see because when you need help, there's always someone to help you. There's always someone, Oh, I'm so sorry. I didn't realize it wasn't working. Yeah. But now I'm telling you now changing. But they want to to help. They want to do the good thing. I think they just don't know how or don't they don't they can't picture it. Yeah, it's exactly they can't even envision that something else needs to happen for someone else. Like it doesn't exist. I give you a platform to like expose what's going on behind these closed doors and what's happening over the phone. Like they're literally not listening to you. You could. And that took how long months you're finally on that prescription today, You know? Yeah. Yeah. Because it was since the beginning of the summer that I was telling them I couldn't eat.

So it's uh it's a long ride. Yeah. I started at the at the end of november. But I think it's eventually, you know, we opening uh the view of people, the mentality of people to see that other people exist and the majority of people are different. Big minority is the majority. So the the white men's stereotype is mineral minority. It's not the majority. So gradually people open their minds to see that the other one exists next to them and they have different needs. So I think, I think the next year should help, but I know that my friends who are wheelchair users for like 25 years to look at me like yeah, keep dreaming girl thing. I I'm hopeful why I think things are changing somewhat.

I mean like, you know, a couple years ago, this kind of thing wouldn't exist. So that's good enough. Yeah. Chin along. Yeah, that's true. Yeah. I mean, even with people with them as we now have groups online instead of in person, you know, like uh it supports group, but it's more friends than anything, you know, so we meet up all together, we have dinner, but we know that there are always some few that cannot be with us. So now that we do it online. Oh, we realized that this is their reality too. And they want to be part of it too. So eventually after Covid will be able to continue to include more people. So it's, I think under a point, as long as it's not your reality, it's really hard to open yourself to someone else's reality. You know, uh someone that you're not closed off or you know, on the daily. I remember a friend that she needs um the toilet to be higher than normal to transfer from her wheelchair to the toilet.

And for me, I don't need it. And I remember every time we're going in restaurants, it was like, yeah. Yeah. So that's it. There's no problem. Is there a bathroom accessible? Yeah, it's accessible if the toilet is higher? I don't know. I never thought to look at it because it's not my reality, you know, learning. And that example is so perfect too because like, okay, you're a wheelchair user also, but you're still living a different life than that friend. It's really hard for us to kind of break out of that mindset. Every disability is different. Sorry, go ahead. Yeah. I mean the same thing. Like have you, do you know of anyone with M. S. Who also experiences the gastro paris is that you did. You know, I don't actually, I realized that it was not due to a message to trailers on loans but on my own again. Yeah. Congratulations. Way to be special. Uh But my my neurologist thomas was always arguing that my heart breathing and gas surprises were not due to events and over time.

My look and yeah, I realized that all of this was due to uh visit to know Mia and we're all related to twitter's on those basically. We're all different. But like what I'm the only one who has that much. Well, we are too, but active and present physically. I'm the only one who has that much cognitive problems. So for them to it was some adaptation, you know, as soon as I get tired, um physically or mentally I would shut down and I'm not able to talk. So it's um, it's an attention. Yeah. No, I'm with you there definitely. With you there and I feel like there's so much about the brain fog and like the brain and cognitive issues that people are just ashamed of also. So I'm happy to see more people just talking about it in general because it's, it's a big part of a lot of these issues. Like it just is and nobody's really even talking about it.

They're just very physical. Like, oh, you can walk great. Like, yeah, but I can't even remember I left the stove off. Like, come on, that's a good point you're saying. I see people starting to know about brain fart now that Covid has one of those lasting effects that people keep having brain fogs and now they realize that whoa, brain fogs exist and it's a term and it's a real thing, you know? Um I don't have any friends that that say the word brain fog. I'm the only one. And I don't know if I'm the only one who experimented or if they don't have it or they have it. They don't want to say it. But I think it was a little bit like my uh my way to accept things at the beginning. You know, like I was someone so proud. Oh my just asking for help was so hard. I remember the first time it was, you know, the little cup of milk you want to put in your coffee. I wasn't able to open it because I had no strength in my hands. But I'm a bug builder. Good thing. So I had to ask someone to do that or to open a bottle of water and that's, you know, after that I realized like, look man, that's that's your deal.

That's okay. You know, just ask people for help. So when I have cognitive problems, I just tell them right away to make sure everything is care. Um They know if I'm I can't forget what you're saying. I can I may not be able to talk. I may not be able to understand you say, you know, like to make it clear and I don't know. I don't I don't feel that I'm really pride or Yeah, yeah, I'm with you. I don't hide it either. I'll tell somebody stuff like that. Okay, can you email me what we just talked about as soon as I walk away, this didn't exist. I'm not joking. I need you to defend me this because I'm not gonna like straight up or people be like, oh, you missed this and this. I'm like, I'm sorry, I was I was lost. I'll get back to it. You know, I don't it's not going to help me because then I'm gonna have to go through the stress of trying to cover it up. And then the stress of trying to remember No, only one dress. But I mean, not even even that took some time for you all to like for us all to realize that it's just reality, right?

Can't keep getting so frustrated because we all our own independent asked women. But sometimes it's okay to not, you know how you need something. Exactly, just help for now. Not forever. Like it's not that deep. I think that that's also why I start a big part of why I started working for myself is that the people I was working for weren't understanding that they're like, you look fine, you're moving, you're doing your job. But you know, if I set a boundary, like, listen, I need to leave by this time because if I worked this long, I'm just shutting down, I can't do it and they would just not respect that. Or you know, listen, if you tell me something today, like I need you to write it down for me, email it to me, I'm going to forget and then they just wouldn't then they're like two weeks later, try to get mad at you for it. Like that, that type of ship is just not it was not helpful, but, you know, everyone doesn't have that luxury of being in a career where they used to be like, all right, I'm on my own then suck you. Like it doesn't work out for everyone. I'm lucky in that regard because that was a huge stress trying to keep up with that.

It's not uh it's not to the advantage of anyone, you know, like I know a lot of people with a mess, they try to hide their handicap for that. They have a hard time to walk. Um when I, you know, I was at the doctor that was at the neurologist appointment and there was a women that had a walker and I was using a cane at that time and I was walking so badly, like I could fall every second I had no balance and the cane was making it worse because I was trying to take support on it, but it was not enough support of what I needed. And she told me from the moment she said don't wait too much. If you start wondering, you might need more help, that means you already needed for us. And so while you know, like if you think it might be time for a wheelchair, well that's already already need Yeah, exactly. You know, and that same day I went to buy a walker because I realized she was talking straight in my face. I was really the reality, you know, but the same thing, like, you know, like I have friends, they put nail college, I usually always have my acrylic nails done, I do that myself and I see them and they there's let's say nail polish all around, and I'm willing to give them tricks to make it easy, even if you're shaking, it's okay, you can do really nice nails, even if you're shaking just by the way, by different tricks, but you have, you know, like you have to be open, that's for someone to help you, you know when you're on the street and someone help you take off, let's say um on a crosswalk, you go up in a crosswalk and it's too hard because it's too high.

Mhm. Someone sometimes take you from behind the wheel chair and they help you. I mean They do it the same way they would help someone else most of the time, 90% of the time, I'm pretty sure, you know, someone dropped something on the floor, someone else will come and take it for them and give it to them when they help us. They don't necessarily help us because we have a handicap or disability, and most of the time, like you say, it's not gonna be visible that you have a disability, so let them help you because anyway, they would help the person that dropped it, let's say, you know, not to see that the health is related to the disability or to uh the fact that I don't know, you know, sometimes they see themselves, like less of a person or stuff like that, it has nothing to do. The person want to help the help. Whatever the reason you don't have to justify. Oh I'm sorry. That's because I have a mess and I don't have strength in my hands so no you don't no help for that moment you move on.

It's not that deep. Exactly. And the first time buddy a boat will not say why they dropped this and why they need help. They just need help. So same for you. You know you don't have to put the disability and then let's just help. That's it. I had a friend after he told me mary you're blocking my uh my benedictions because if you don't let me help you I'm trying to do a good actions to you and you refuse my health. Now I cannot do a good action and feel good about myself and get blessing. But it's true when you think about it. People feel good when they help you you know so let them be happy and help you. I mean if it makes it easier for you, why not? Yeah. I mean there's there's arguments for when you don't need help but that's not what we're talking about. That's a different conversation. You need help. You take the help. Yeah. But I mean at the beginning that's also from a friend that was disabled from a long time.

Um At first I was always saying no thank you. And I was trying to say the nice way. Even now I always say no thank you very much but I appreciate that. Thank you. No, but I always ask myself do I need help first? Yeah, we didn't make it slightly even easy. Even I know I can do it but we didn't make it easy. Will it save energy for the rest of the day? Yes. Well then, yeah. So yes, you know, It doesn't mean you're not able to do it. It just means that it's gonna save you energy for two planets. Smart. Yeah, it has comfort. Yeah. Yeah, that's true. And if you don't need the help will be nice about it. No, thank you. I appreciate because the next time I want you to be willing to ask me and I might say yes because I might need it right? Yeah, might change by the day you want to help them and they're like no, I'm fine, thank you. Well, too bad for human. I'll never ask you again. Exactly.

They're afraid to approach you because of that. So I'm trying to have a good smile all the time and you know, we still left. Yeah. You don't want to burn that bridge because one day you might actually need Exactly playing the long game. That's pretty funny, Man. Well, that was a great conversation I think. But is there anything uh well like what we tell everybody, you're always welcome to come back. Does not have to be your only episode if you have 10 episodes in the roads? Okay? You can hog us. It doesn't matter. But is there anything that we didn't even touch on? Anything we're missing in this conversation that you just want to say. Um there I think there's two things, but the one I think right now it's about the media and the fashion and how it affects people with disability, the way that the media projected. Um, I participated in a few interview with pictures and television and where they want to be inclusive.

They want to include handicapped disabled people. Um, but it feels they just want to include the wheelchair. Uh, they want you to look like what a person should look like according to society. You should look sick. Um, you know, the that's it really shocked me when I saw it at first. So that that's one of the part that for me. Um, and I see why so many friends like more for men, but same thing with women, but when they become when using a wheelchair, it becomes their identity. And suddenly they don't take care of themselves. The men don't feel as masculine as they used to. Uh, women might not take care about both sides. Find that take care of um themselves, let's say makeup or clothes because you can't be beautiful for exactly. You know, we'll show you supposed to look sick. Well, I'm sick. It's okay if I don't look sick.

Thank you. But I don't have to look sick. You know, uh you can look very fashion. You can look well, good fantasy, whatever you want to look like, have your own style, even if you're using a mobility. Uh, but that's something the media they they want it, but they don't want it. You know, like I did some photos shot and I wanted to take some positions in my wheelchair. And they Yeah, but no, they don't want that because usually people cannot do that if they're in the cat. Yeah, but I Can usually because unless you're talking only about the 10% people in wheelchair that have spinal cord injury. 90% of people in a wheelchair can walk. All right, We have some mobility. It's reduced mobility. It's not no mobility, but they don't necessarily see that. So they want to project only one image and at the end it affect also the people with disability. So that's something uh they were entitled this episode where your damn heels if you want to.

Yes, disabled and cute. Exactly. Like sometimes they I mean in 2017 and 18, I literally spent every day in hospital not sleeping there. So that means going to the hospital and coming back, but spending the whole day there. And that's when I started using the heels and the styling and everything. Because for me, it was for my mental health. If I see myself going in a hospital clothes and my hospital clothes are kind of pajamas and leggings and comfy stuff. It's okay if it's your style. But me, it means that I don't feel well, it feels that I'm sick and therefore I'm not gonna feel well. But if I go, even if I go to the hospital and I look good, I look well, I don't feel sick, my brain doesn't know that after the appointment, I'm not going for a nice supper or to the club, wait for a moment to go to dress up properly.

Let's say I would have never had that chance. You know, there was no moment for that. I mean, I was not going to work anymore. I was not going, I was just going to hospital. Well, I decided really to include that uh, in my style and that it becomes really something normal because for me, I see the difference it makes on my mental health and my self esteem. No, uh if I feel good about my clothes, it's already a mask, even though I have a lot of pain and I don't feel well, it's, it's a little boost better than nothing. Yeah, no, I mean, that's that's what self care is for you. That's what makes you feel good things on. Yeah, I'm creating happiness. Yeah. Gonna be in pain. We're gonna have to figure it out. Like we're gonna have all these extra steps anyway. So if we could find a couple of things that give us a little boost and you'll get you a little boost that put those heels on, reminds reminds me of when, because uh like I'm missing my left hand and I have a tiny little nail on one of those fingers, you're like oh you never need to put nail polish.

But it's what made me feel like I was including both arms, you know, paint, paint all the damn nails and I feel good because there is smart. That's true, That's a little nail, A little nail. I didn't know that. It's a good thing you're saying dance because it's like, you know like sometimes people they talk about their illness, like if it's an entity itself, it's something something that is out of their body and that is attacking them and my M. S. Is not doing well or you know like my I am not gonna like this or you know, it's part of me, it's part of you, I am, it's part of my body, my body is beautiful and it's hill, but it's a game and it's a team and we work together, you know like that it helps you to be in harmony with all your body and all your illness and what comes with it, I agree hard grease, so your little nails all together with all the nails mary beth oh yeah right?

That's right And like how people decorate, you know, and decorate, put tattoos, put stickers on prosthetics, it's 16, whatever part of good when you go out there because they're gonna stare anyway, Let them stare at that beauty. There you go. Exactly. I couldn't say it better. They're gonna stare anyway. Yeah, lovely. I love it. So we gotta we gotta talk more obviously, but for now. Uh huh. Yeah, it was really cooler to talk with you girls. I really appreciate it. Yeah, thank you. Thank you disabled girls out. Thanks for listening to disabled girls who left. We appreciate all of your support and everyone who's taken the time to show us some love. Don't forget to subscribe, rate already. Review of our channel. We're on apple podcasts, Spotify player, FM, google podcasts and more. You can also find us on instagram at disabled girls who left. Hi.

E42: Rolling into Bodybuilding with Marie
E42: Rolling into Bodybuilding with Marie
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