Living with MS: Marielle Dacquel’s Journey of Resilience. Ms Warrior 49

[MS Michigan Man 64 — Interview with Marielle Dacquel
Cleaned transcript (timestamps removed)

I wouldn’t even wish you’d understand. I just wish that God had a better plan. I’m so confused. I need a redo. A redo. There’s something that’s inside of me that’s begging and begging and pleading. I just want to feel free. I just want to feel lovely. I’m surrounded by love that’s in pain. Can I wipe your tears away? Please don’t hurt me. I hate that it’s for me. Oh, I hate that it’s for me. Hi, welcome to the MS Michigan Man 64 podcast. My name is Brian. I am the MS Michigan Man 64. I was diagnosed with my MS back in 1997.

Five years before that, back in 1992, I was playing football for the University of Michigan in the Rose Bowl against Washington. And then five years later, I go through a diagnosis of having MS, a chronic disease that there is no cure for right now. And in this podcast, I talk a lot about my journey, what it’s been like for me living with this disease for the last 28 years. And I invite other chronic disease warriors to talk about their journey just to try to help everybody understand what it’s like going through that diagnosis, the mental health part of it, the family part of it, the employment part of it. Today I am headed up north of me up in Canada.

I met this beautiful lady on TikTok um a couple months ago and I love everything that’s about her. She goes by Apple on TikTok and her real name is Marielle and she’s a badass. She was been diagnosed since 2012 and she’s been fighting that fight ever since. She wanted to come on and talk about her journey with her MS. Please welcome to the podcast. Marielle, how you doing today, Marielle? Hi. What an honor, Brian, to be here. I’m really excited. Thanks so much for the introduction. Ah, no problem, Marielle. I am so excited just to be talking with you.

I know we’ve known each other for a couple months and you know we’ve been in lives together and I know that you know we just have a lot of commonalities with our disease. I mean we were even diagnosed around the same age and everything. Um so my first question to you Marielle I know you’ve been doing this since 2012. What was going on in your life back in 2012 when you got that diagnosis? Uh what led up to it to go to the doctor? what kind of symptoms were you having uh that led up to them telling you you had MS?

So during that time actually in my life I was really focused on my career and my son who is 19 now was 5 years old when I was diagnosed and um I remember we went to the Mall of America cuz Mall of America is in Minneapolis, right? Yeah. And so it’s 8 hour drive. Uh I walked the entire mall. That was when I could walk and I woke up in the hotel room and I had a numb toe and I just thought that was weird. Like my toe is numb, you know what I mean? And the numb toe didn’t go away. So I started like doctor googling it and then realized, oh crap, I probably have a problem.

And then knowing that if I went in to the doctors and said I just have a numb toe, it wouldn’t be as urgent. So, I made it urgent and I let them know like, “Yeah, I think something’s erious.” Like, “My numb toe is not going away. It’s not disruptive, but it’s just weird.” Advocated, got the MRI, and then found out relatively quickly. However, when I educate myself more about MS, I realized that my first symptoms weren’t when I was 27 years old at Mall of America. It was when I was 17 years old as a kid. you know, and that was a part. Yeah. Go ahead.

You know, I I I have a a little bit of a similar um side to my story. I was diagnosed at 27, too. I know we were talking about this earlier. Um, back when I was 23, I was in a car accident and, you know, I didn’t have any symptoms, but I I was in a car accident and I had an MRI done and I had a doctor back then tell me that there were signs of MS, but I didn’t even know what he was talking about, so I ignored it. Um, but there’s things that happened in that time period that I could probably say, you know, that probably was MS.

I I just put it to, you know, hey, I played football and I had a lot of injuries and and you know, but I thinking back at it now, it might have been MS, but I don’t know. But I I didn’t mean to interrupt you, but So, you said that you you got your diagnosis at 27, but you had symptoms way before that. Yeah. So, oh gosh, the names of the symptoms are just um going to I can’t remember what they’re called, but you know, so I played a lot of sports. I played basketball. I played, you know, like I was on teams, played volleyball. I didn’t like volleyball as much, but basketball was my sport.

I went biking to the community centers just to play ball type of thing. And I remember this this game I had when I was 17 years old. Um, you know, I was feeling hot dribbling down the court. Had a chance to shoot the three-pointer because it was a buzzer beater I was going to shoot, right? Um, looked down because I want to make sure that was a three-point shot. So, I looked down and so my neck was down, right? You know that symptom when you go, you look down and you get that electric shock. I experienced that the first time during that three-point shot. That was the most amazing shot I made.

Looked down, made the shot swish in, got an N1, got fouled, but then I the the person didn’t push me. What freaked me out was my leg. I felt that electric shock in my leg. Instantly went numb and crashed down to the floor. made the shot and then crashed down to the floor. And then I thought about that time because one, when I think about it before my diagnosis, even knowing about MS, I just thought that was a badass shot. Now when I think about everything that happened, I’m like, that was an MS symptom. And I still feel that to that day, that electric shock feeling all over my body when I put my head down.

And I’m like, that’s what made me fall. And like, could I have been diagnosed when I was 17? And I remember um also after playing basketball, I’d go to the change room and I’d lose my vision, but I’d think it’s normal. I’d think, “Oh, I’m hot. I’m tired. My eyes my blurry or my eyes are blurry, but that’s that’s normal. I just worked out.” And then I found out later that’s not normal. So, let me ask you this, Marielle. when when you were going through those symptoms before you got your diagnosis, um were were you telling doctors, were you telling your mom and dad like, you know, hey, this is going on. I’m getting this electric shock.

Um or or were you just ignoring it yourself? I ignored it because I didn’t think it was a problem. I thought it was part of the game, you know? I thought I I thought I was just an athlete and you just go with it, right? I get it. So, yeah. and heat intolerance, very sensitive to heat. But then I didn’t realize that, you know, I just thought, “Oh man, I’m I’m I’m getting overweight. I’m just out of shape.” But, you know, like when I would exercise, my legs would turn into jell-o. And then I found out later, you know, heat intolerance doesn’t just mean environmental heat. It means like you can feel the effects when you exercise.

Even when you’re cooking in the kitchen, if it gets hot, you’ll feel the effects of of whatever the term is, heat intolerance. Yeah. intolerance. Yeah. So, let me ask you this, Marielle. When you got that diagnosis at 27, and I know you know a hell of a lot about your MS now, just like I do, but back when I was 27, I was clueless. I didn’t understand the disease. What what what was going through your head when that doctor sat you down and said, “You got MS?” See, the thing is with me, whenever I’m I’m throwing a curveball, I go full force with what I need to do.

So, however, with MS when the doctor told me that I got a promotion, you know, I I I moved into a new office. I I didn’t work for the MS community then, but I was still helping uh vulnerable persons um live successfully in the community and I did a lot of fundraising for them. I did my best fundraiser, my very first one, was so proud of it the same year I was diagnosed. And my mom always tells me, you know, like whenever I’m given something bad, I know how to turn it into something great. Not even good, great. And I think I’m really proud of that. You give me an MS diagnosis, let me show you what I can do.

And then MS comes back and says, “Nope, sit down.” And then I go back and say, “Nope, I I’m in charge.” You know, it’s been a ping-pong battle between MS. But every time I’ve always come out, you know, doing something extraordinary. And I don’t mean that in any arrogant way. I mean that cuz I’m proud. MS has knocked me down like like bowling pins. And I came back up every single time. Even better. I love it, Marielle. You know, and I and I’ve met so many badasses uh since I started doing this podcast, and I tell them the same thing. you know, MS, you you met you had accomplishments before your diagnosis that you were proud of, and there’s going to be so many things that you’re going to accomplish after your diagnosis that you’re going to be proud of.

You know, I’m I’m proud of the fact that I made it 20 years still working for the state of Ohio after my diagnosis. I mean, I’m proud of that. You know, I’m proud of the fact that I’m still upright and and walking, you know, as well as I do. Um, you know, I I and I because I know that there’s a lot of people that that don’t have that ability and even talking, you know, and that’s the thing that when I started doing this podcast, I love to talk and I can still talk and I know MS can take your voice away.

So, you know, I I you know, you got to be you got to be proud of whatever you can do. You know, MS might slow you down, but you could still figure out how to keep on living a great a good as good a life as you can. Oh, totally. And that’s what I say too, right? So for me, being resourceful, right? Knowing that there could be a solution out there. So um being resourceful, being adaptable, and keeping sustainability in mind. Those are like three key things for me where I need to know what’s available in terms of resources. What’s going to help me? Um knowing that I don’t have the family support.

You know, I can’t take back that my parents have passed away. Um it makes me sad and when I am struggling because I I will struggle hard at least once a month as a single mom with or without a disability. You will struggle as a single mom. Right. Right. Yeah. But um you know it’s it’s during those times where I’m reminded I have the connection. The reason why I built my resilience is through the people I’ve met. You know whether they’re friends, family, or even my healthcare team, right? They’re there to help me and I need to utilize um everything that I can.

Um, but yeah, sorry I’m losing train of thought because this topic is just so important to me. There’s like a million thoughts going in my head. No, yeah, you’re fine. I I just I’m talking about the mental part of it. Like, you know, when when we got when we got our diagnosis, um, I know that I struggled with just understanding the disease and what my new life was going to be and there’s no cure for it and just trying to figure out. And you know I that’s the the I think that’s been the hardest part for me Marielle is has been the mental part of it.

You know just going through that diagnosis at 27 years old and then and then you know everything that happens to you after that. The mental part has been the hardest part for me and I was just wondering how you handled the mental part at your diagnosis of understanding what was going on with you. Mental health definitely wasn’t prioritized at the beginning. I prioritize the physical part because that’s what the textbook what I understood from textbook right so maintaining a healthy body body weight I was 300 lb at my heaviest at 54 that is not a healthy body weight so I focused on that and went to the MS clinic dietitionian to you know get my nutrition in order lost 150 pounds but then I was still messed in the head in terms of my disability because while I put in the work that took me three years to lose that weight.

MS was like, “Nope, you’re not going to walk. You need a walking cane.” Did all that work and still became disabled. That was the most depressing thing to ever face. To wake up one day and not be able to walk, but being the the the smallest I’ve ever been in my body. And it’s like the textbook told me that. You know what I mean? Right. So, um I have fallen into pretty deep depressions post-diagnos pre-diagnosis too. It wasn’t until recently actually after some pretty traumatic incidents that have occurred indirectly I would blame multiple sclerosis life with multiple sclerosis that led me to that those traumatic incidents.

And it wasn’t until um and it wasn’t until those incidents occurred when I realized I am not taking care of my mental health properly, you know, and then seeing the effects, the impact that it has on my kids. That’s not okay. I need to try harder. So, since then, I’ve been seeing a trauma therapist bi-weekly. By weekly, it is a lot of work. On top of the trauma therapist, I’m seeing a psychiatrist. On top of the psychiatrist, I’m seeing a regular counselor. I have three specialists. Plus, um, I’m looking into medication as well. This doesn’t mean I’m crazy.

There’s a lot of stigma around mental health, but to know that the fight that I have in it and knowing how frustrating it is, of course, there’s going to be mental health challenges, I need to be proactive in what I do. And then I find that getting my close people involved too where they they have that understanding that I need mental health support, you know, I’m just set up well. Yeah. You know, and I think that that that that is something that I didn’t understand early in my disease, just how hard this, you know, the physical part is hard, but the mental part has been the hardest part to me. you know, whether it it’s, you know, going through an episode every year because of stress, you know, I know we talked a lot about that, you know, um I it took me probably 10 years to figure out that stress was a key trigger for me in in um in in making my MS flare up.

And you know, I I just like the stress of planning a wedding, you know, I didn’t realize that that’s what really triggered my MS, you know, just that that stress. It was good stress, but I mean, it was stress that like ignited my MS. And then like just the stress of of uh the holidays every year I would go into a flare and and you know like stress at work and I would have a flare. I mean stress it took me 10 years to figure out how important it , 1 secondis to handle stress and just to try to avoid it as as much as you can.

And and I I hear that a lot from people that they they they have bad bad um episodes in stressful parts of their life. Yeah, there’s definitely correlation there in my own lived experience too. You know, during stressful times and then I get the relapse relapse to the point where I need um the steroids, you know, and or you know, experiencing some of my worst um experience uh experiencing some of my worst relapses which have been in my hands, losing uh all function in both hands during a pretty bad relapse twice in my life. This was this hit me more than losing the ability to walk. I never realized how much I used my hands. I couldn’t do anything.

I even said it in a speech. I couldn’t brush my teeth, brush my hair. I couldn’t cook. I couldn’t feed. I couldn’t hug my children. That was sad. You know, even like when when I say hug my children, of course, you use your hands, your arms. But I never realized how much I use my hands when I hug someone, you know, like it’s it it was sad to know that this could happen. Yeah. And and I know it was a relapse and I recovered from it, but MS is unpredictable. While you’re while you’re going through that, you’re scared.

You know, I I know I know like, you know, when you’re initially I’ve talked to people that, you know, they they were in wheelchairs for months, you know, and and they wondered if they were going to be in them for the rest of their lives. And I, you know, and I tried telling people, you know, you don’t know. And I went blind on my first episode. You know, I was like, I couldn’t see. And I I was like, is this the way I’m going to be the rest of my life? you know, that initial um symptom that you have that puts you into that that that episode um that gets you diagnosed.

It’s a scary time, you know, and and I was just I was just wondering how you handled the mental because I know a lot of people, you know, they’re in the same situation. They’re scared. And I I always try to tell them, you know, the the the world is going to stop spinning. you know, your life is going to stop spinning around in in a in a circle and it’s going to slow down for you and you’re going to start understanding it. Um, you know, it’s just a time thing. you know, some some people understand it a little earlier than others, but I think the sooner that you can find that that that that what’s going on with your body and and just start building tools to to use um to take your mind off of it, you know, like I my employment was my tool, you know.

I that was my motivation to get up every day. When I lost that, I had to figure it out. I had to figure something else out. And I got into this podcasting. I know people that get into art. I know people that that get into um um writing. You know, you got to find a passion because we still have a lot of talent. Even though we don’t, you know, I can’t work. I can still I still have a lot of talent. I can talk forever. So, let’s talk, you know, let’s talk about MS. Let’s talk about what it’s like. Um you know, well, it’s a reinventing, right? Because with MS, you grieve.

You grieve your old self and you continue to grieve as like for me I I’m continuously grieving as my as I progress and my baseline changes you know I’m still holding on to hope cuz who knows right and the whole thing where you live each day day by day in the moment I take that seriously now I don’t look too far into the future and if I have to look into the future I don’t just have a plan A I have a plan B C D E F G H I J K L M N O P Yep. Yep. Yep. I’ve been through the alphabet a couple of times already.

I think I’m at like uh you know the third uh 3.0 or 4.0 with the alphabet. I’m really happy to say that out loud and have people understand that. And I think when we realize that we can’t set us up for um failure or like you know don’t have that expectations because I’m sorry MS is unpredictable. I’ve learned not to have expectations because things can change just like that hour by hour. It’s not even day by day. It’s hour sometimes minute by minute, you know, it changes. So, if I’m realistic in how I plan my life, then I think I’m okay.

And even with my kids, right, I let them know like, you know, life is really hard and what I would be happy as a mom if my children are happy. That’s how I measure success by the happiness of my kids. I told them it’s not about the job you have, not about the money. It’s not if you’re able-bodied or disabled. It’s your if you’re happy. Yeah. Absolutely. So, let’s talk about the kids because I got two kids, too. And they never knew me before my MS. So, they never knew me healthy. And, you know, I I didn’t know if what I was doing with my first wife at the time was right or wrong.

You know, you’re just kind of winging it. But I didn’t want my kids to be scared of my disease. So I would try to explain to them at a young age, you know, two, three, four years old, that dad had MS and he had to do a shot every day. And, you know, but I was still their dad. You know, I I didn’t I I didn’t want them to lose the fact that I’m still the same person. You know, no matter what happens to me, if I end up in a wheelchair, if I end up using a cane, I’m still going to be your dad. How did your kids How did you teach your kids about your MS, Morel?

I was pretty u um open about it. Like nothing that would scare them obviously, but then sometimes it was inevitable. It’s extremely um hard to even navigate through a household with physical disabilities and I I lose my vision too, like on a weekly basis, right? Like um it’s a normal thing for me to have these exacerbations of my symptoms. I don’t think my kids are scared of it. They’re used to it. You know, my little one has always known me with MS. I progressed big time after he was born. And then my 19-year-old, he was 5 years old, so he’s known me for a very long time with MS.

And I don’t I don’t think they remember me as an able-bodied mom ever. Well, my little one never knew me as an able-bodied mom. Um, I think for us though, the biggest struggle was just the support and seeking that support. um you know and and we have loving friends and families. It’s just the burden of that too, right? And my friends know if I absolutely need the help, I’ll reach out. But then within like I’ve been diagnosed for what 14 years now. I probably only really asked them for help five times out of the 14 years, you know. And then there’s that thing too where it’s like don’t be afraid to ask for help.

No, I will be afraid to ask for help because that’s going to affect my mental health, you know. Exactly. You know, and and we don’t want to lose our independence. I know I’m like that too, Marielle. I you know, I use a cane, I use a wheelchair, I use a walker, you know, just depending on the situation. And I have people I go up to the lake a lot and I go fishing and I have people up there that’ll say, “Hey, Brian, you need some help with that?” No, I got it. I got it. I mean, could could I have used that help?

Yeah, I could have, but I don’t want to take it because I don’t want to lose that independence, you know? And and I I think a lot of us are like that. I we’re afraid that if we say, “Yeah, we need help.” That we’re going to have to we’re going to have to ask for help every time. And I don’t want to do that. Oh, I’m stubborn. I’m just Okay. So, a lot of the times I I take Handy Transit, like the accessible uh buses. So, they come up to my door to pick me up, like a taxi cab, and um they’re supposed to like walk to your door and then offer you help.

Every time I’m just like, “No, thank you. I can walk.” And I try to walk as like, you know, like confidently as possible. I’m slow. And they’ll be like, “Are you sure you don’t need help?” I’m like, “I may be slow, but I can do it myself.” You know, it’s more of a pride thing, but I’m okay doing that. It I’ll be slow though. You need to have patience with me, but I won’t require help. I should say though, when I absolutely need the help, cuz I know my body well. I’ve been living with the disability for so long. I will ask for help. You know, I’ve had I’ve had people carry me when I needed to needed them.

I’m not I’m not I’m not afraid to ask for help. I mean, I I’ve learned I’ve learned, you know, when I when things that I can’t do, you know, I understand that, but it like you said, it is a it it’s a it’s a battle with your mind, you know. It’s a mental health and that’s why I always tell people the mental part is the hardest part, you know, and you got to take care of your mind. So, let me ask you what what um what kind of DMT route did they take you down? How did you um like from your diagnosis? Because I’ve been on about five or six of them now.

So, I What did they do with you? Oh, I can’t blame the health care system for that because for me, I I just discovered recently that um I have a trauma response to prescription drugs. So when I first started actually um it took me a while to get um started on my first DMT. Um so I was diagnosed in 2012. My first DMT wasn’t until 2019. I was in a very long denial stage of my grief. So 7 years of of denial and then finally tried Tecfidera in 2019 and I absolutely hated it. You know, experienced the flushing. I heard about the flushing, but no one told me I’d have red dots all over my face.

And you can’t cover that with makeup. First of all, I don’t know how to wear makeup. You know what I mean? I can’t cover it up. And then I’m like, I’m not going to be out looking like red dots all over my face. And then I started getting stomach pains that were worse than child birth. And I have a high pain tolerance with kids. I didn’t take any drugs to deliver my babies. With Tecfidera, the the stomach pains hurt me so bad. I was like, “Nope, I can’t do it.” I tried it. I hacked it out for 3 months and I was like, “I I’m in pain. I’m not going out because of my face and my belly.

It’s not working for me.” I understand that. It was weird. You know, where So, you I’m glad you you you advocated for yourself. Similar situation. My first DMT was Avonex. There were only three out at the time. And I was sick every weekend um for a month. And I went to my doctor after a month and said, “Doc, I can’t do this. I can’t. There’s no way in the world.” And he switched me. He put me on capacin and I tolerated that a lot better. Um, so after Tecfidera, what did they do with you after that? I went off DMTs for a long time actually and I I started CMP. Yeah.

So it was a really rocky time in my life. Um Um, so DMTs weren’t my priority. And that’s what people have to understand. Sometimes with the circumstances it’s hard admin like the administrative side of taking a DMT is a lot harder than people think. So if you’re suffering from cognitive impairment you got to be proactive with that too before starting any kind of medical treatment and to ask for advocacy cuz I need that advocacy. I don’t want to have my my 19-year-old son taking care of my medications too. Hell no. I put too much on him, you know?

But thankfully thankfully now though um with I’m on um I had troubles with it at first because um they would deliver boxes and the cooler and my problem was giving it back to them. like I I’m not physically capable of going to the post office, mailing it all this stuff back to you and then D. So I I told them if that’s if there’s any way we can avoid that, you know, giving you back your ice packs or whatever, then I’ll go on it. They were so great. Set up this plan. They were like, you don’t have to mail anything back, keep all the ice packs, like we got you.

So now because I don’t have to take care of anything, I just got to um you know give myself that shot monthly. I’m good with it. It’s easy for me. And you’re and you’re tolerating it. It doesn’t make you sick. It you your body is tolerating it. Good. However, I do need to share my very first dose like so the loading dose. The very first time I tried Kesimpta, it was I I took the injection at 9:00 a.m. Not knowing that it’s probably best to take it at night. So, a few hours went by and I felt that feverish feeling and I didn’t hear that I had like flu-l like symptoms, but I started feeling like I was getting the flu.

So, it was probably like, you know, like around 300 p.m. So, 6 hours after my injection, I um I had to move to my son’s bedroom cuz he’s closer to the bad bathrooms. Yeah. And then I I went to use the bathroom. As soon as I got up from the toilet, just profusely sweating, just water dripping through through my head, like everywhere my face. I start walking out of the bathroom. Couldn’t make it um to the bedroom and I I collapsed. Good thing my my son was there. I was like, “Get me a pillow.” Like I didn’t say it out loud. I I signaled a pillow and then um laid down. Lost all function. Couldn’t see. I couldn’t talk.

Couldn’t move. I prayed to God in my head. I was like, “If this is me dying, take care of my children.” I I stayed like that for 10 minutes. It was a little dramatic, but when you’re experiencing that Yeah. Like it’s scary. I I I know. And a lot of people, they don’t understand what we have to go through with a lot of these DMTs. I’ve had DMTs that have have have made me have a lot of like symptoms like hot flashes. Um I actually if you if I don’t know what I would hit with my Copaxone if because it was subcutaneous and if I would hit a certain spot, it would it would literally take my breath away.

Like my my chest would close up. I don’t know what I was hitting. I would tell my doctor about it. He said, “Yeah, you know, I don’t know.” He explained it in his medical terminology that I didn’t understand. But I mean, that’s a part that a lot of people don’t understand. A lot of these DMTs, they do a lot of wacky things with our bodies, you know, and we’re just and all we’re we’re taking them just to try to survive, you know. We don’t we’re putting this in that don’t make us feel good. We’re just doing it to try to help us to make it to the next day. Really? I know.

Well, the way that I explain DMTs to people is just like, you know, they’re not there to manage your symptoms. They’re there so your future self can can thank you for delaying the progression, you know, if it ever does. Like the first time I heard about DMTs and it’s like, oh, this this drug ha costs like $7,500 per injection, but it has a 30% effective rate. Like, excuse me, it costs that much without a 100% guarantee. What? Right. Yeah. Exactly. I mean, it’s So, let let here’s I want to go into where we met on TikTok. I want to talk about first and just give you props that you have an absolutely beautiful voice. Um, I know. Oh, thanks.

I know you do a lot of singing on TikTok and you, you know, your your son plays the piano. Um, you’re you’re very um musically inclined and I want to talk about the platform where we met on TikTok and um what your motivation is using that platform to help spread awareness and just talk about how we met. Uh Marielle, for sure. Well, with TikTok, I actually was on TikTok a year and a half before I discovered the MS community, not even knowing that the MS community existed. So, the reason why I joined TikTok was to see if I can collaborate globally um with other people who would want to raise awareness with me.

And I actually got connected first with people not connected to MS at all. We did this big fundraiser for MS. the streamer Aaron Aesthetics raised $2,100 Canadian in just one stream alone. And then after that, I kind of just lingered around just to see what else was out there. And then like a month and a half ago, I discovered you and the rest of the MS crew. It was it was like I don’t know. It felt like Christmas. You know that feeling like you just walk in like and I felt like home.

I didn’t usually I’m an anxious person and I like you may not be able to tell but like I don’t know if shy is the right word but I’ll get anxious and not because everyone was so welcoming I felt like I was able to be myself early you know what I mean and I can come as I am I don’t need to worry about my hair being greasy or you know wearing the same shirt I wore yesterday like I’m sure people do that it’s common I hope right yeah absolutely know, like judgmentfree zone and it’s like I can talk about um incontinence and you guys won’t judge me. Like that’s amazing. I know, right?

I mean, we could talk about um having sexual dysfunction and people aren’t going to freak out. I I mean that that community I know I was about 52. I’m 56 now. I’ve been on it for three years, four years. Um, but when my daughter put me onto that or just showed me TikTok, I was like, I you know, I I can’t do that. You know, I’m too old for that crap. And when she showed me the MS community and one of the first ladies that I met on there was uh Debbie out in Colorado and Tilly up in Tilly up in the British Columbia, Canada, and Trina down in Tennessee. And I I I and I met these people.

I’m just like, “Oh my god, this is unbelievable.” you know, and here I am three three three years later and 3,500 followers, you know, and now I’m doing podcast and I’m talking about MS and I’m sitting here with you and I the platform is incredible on just helping spread awareness about what it’s like living with this disease. I love it. I do too. I do too. And I appreciate how far of a reach we have, right? Um, I do a lot of in-person stuff, but like I said earlier, like it’s just so much more work doing things in person, but you get on a platform, you make some content that resonates with people.

Don’t be shy to like, you know, make conversation, get into the live streams, you’ll you’ll connect. Connection is so important to me. And that’s something, you know, like my motto is like resilience through connection. If I did not have that connection, I would not have the strength nor the willpower nor determination to do what I need to do to have a life full of meaning. You know what I mean? And thankfully, and this is what I wish for everyone living with MS, I wish everyone finds their purpose with this disease. Not necessarily connected to this this disease, but I hope the disease guides you to your purpose.

You know, Brian, with you, what if this was your purpose? the podcast connecting people, you know, after diagnosis. This is where we were meant to be. And yeah, like I’m not sad like I am not sad anymore about living with MS. I think I rock it in a way that makes me makes me positive without being that toxic positive girl. You know what I mean? I think I was her once before, but now I think I really own it. It’s the pain I turned into passion and purpose, you know. And I the way that I look at it, you know, this whole TikTok community that we’re all a part of, we’re we’re like all a team, you know, it it’s it’s it’s the team, the team, the team.

And you know, that my my old football coach Bo Schembechler, he’s famous for for kind of coining that with the University of Michigan, the team, the team, the team. And I I look at at all the MSers all over the world. We’re just a we’re a team. You know, it doesn’t matter if we’re white, if we’re black, if we’re Hispanic, you know, if we’re from the UK, if we’re from Canada, we’re from the United States. It doesn’t matter. It does. Yeah. It doesn’t matter, man. We are all a team and we just need to come together and just keep talking about this because that’s the only way that anybody’s going to understand this freaking disease.

I love how you said that and you called it a team because um recently I said whenever I hear that someone has a big win whether it’s an MS win you know someone who took their first step after being bedridden for so long or someone who got their first job after struggling you know to to get back to baseline like that type of thing I feel your win or even if someone gets approved for for disability like one of my main jobs is I help people fill out um Canada disability uh benefits. So you you can go off work and you’ll get the payments from the federal government. When I hear that someone I helped gets approved, that’s a win.

That’s like I got approved. Absolutely. Anyone in the world, if you share a win with me, I am celebrating with you. Absolutely, man. I I absolutely love that. Marielle, I you know, I I I say this to a lot of people that, you know, I record with and I’m going to say it to you. Um, I would love to meet you. I think that would just be awesome. Um, I get I’ve gotten to meet quite a few people that I have met on TikTok. I’ve met them in person and you’re on that list, man. I just love everything that you’re about. Um, what what what keeps you motivated? You’ve been doing this since 2012.

I’ve been doing this since 2000 or since 1997. Um, what keeps you motivated just to keep on fighting this fight with MS? I I because you’re always in you’re all Exactly. I knew you were going to say that, but go ahead. I’m sorry. Go ahead. No, it’s not it’s not a cliche answer. It’s my children. You know what I mean? Everything I do and um excuse me, I think part of it has something to do with mental health because my self-worth I needed some work on. It wasn’t until, you know, getting getting disabled, not being able to lose my legs, but still proving that I’m still able that kind of built up my confidence.

However, I realized like with my kids, like I want to leave my legacy for my children. Um, you know, my grandmother just passed away in March. My grandmother is a matriarch of her family in the 60s. She left my grandpa in the Philippines cuz my grandpa did he didn’t want a better life in in Canada, right? He wanted to stay in the Philippines. extremely poor and all that. And my grandma was like, “No, we have four children. I’m going to make a life in Canada.” As a woman in the 60s, that was hard to do, but she did it anyway. Absolutely.

She brought her all her kids to Canada, four of them at different times, one of them being my mom. Um, bought her own own house, got a career. Every single one of my family members are just by definition successful, you know, happy, successful, have family. My grandmother did that. I want to do that for my family, too. I want to make sure my kids, despite all all of the barriers that we faced as a family, despite all of that, they still had a mom, left the legacy, set them up well, and I want them to remember me forever. And whenever they’re in a bind, I want them to think, hey, what did mom do? You know, that’s my motivation.

Mom was disabled, but she still did this. Yeah. I abs I absolutely love that, Marielle. You know, I I I I that is like it’s beautiful. You know, you want to be you want to be known as a fighter, you know, and that’s that’s kind of the same thing that I you know, I just want to be known that I had MS and I never quit. I never quit. And you know, if if MS threw a roadblock up in front of me, I figured it out and and and figured out another way to get by it and just said, you know, screw you, MS.

I’m just going to keep on going, you know, and and that’s the way you are and I I just love everything that you’re about, Marielle. I really appreciate you uh coming on and sharing your journey with me. You you will have an open spot anytime you want to come back on and talk about anything you want. I know we really haven’t even touched on MS Canada, what you do for them a lot. Um, but I I would love to have you on. Is there anything else you want to say before I wrap this one up? I am on a 90-day mission, though. Um, because I’ve had the MS.

I missed a few deadlines, a lot of deadlines, but August 29th is the last day that um I set for myself for this 90-day mission, and it is to raise 25K Canadian for the MS community. And that’s why I’m back on social media. It’s to raise awareness and the funds. I see firsthand where the funds have gone. I’m meeting researchers. I’m meeting people in the community who have benefited from these programs. What I do on the internet now is no longer to share my own story. It’s to share others because I feel like we are a force of a community and we need to be out there more to show the world what we’re about. It’s no more pity pity.

It’s more of like, hey, we’re badasses and more of bad asses together. Absolutely, man. We I, you know, I have met so many bad asses in this community. You’re you’re one of them. Um, you know, we we just none of us quit, man. We just want to be understood and we just want to keep fighting this fight and, you know, and and if we need help, we we would like the help, you know, whether it’s from our government or from our family or friends or whatever. We just want to be understood. I love everything that you’re about, Mariela. and I really appreciate you coming on and you go by Apple on TikTok.

If anybody wants to find you on TikTok, you go by Apple. Um I I just love on the Lived Experience Network actually. Yeah. Sorry, getting confused. So Lived Experience Network is my um handle on social media on TikTok, but then people call me Apple when they see me in the boxes. Gotcha. Okay. All right. I’m gonna get going. Um, thank you. Thank you so much for Marielle for coming on with me today. Don’t forget to hit the subscribe button and share it out. Uh, we want to be understood. The best way to be understood is to listen to us talk. Until the next episode, this is the MS Michigan Man 64. I am out.

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