Knowledge is Power: a Conversation with Kayla and Lizelle

Interview with Kayla Chatkiewicz, and Lizelle Mendoza

We recently linked up with two of our fantastic #MSWalk ambassadors and asked them to discuss what this year’s World MS Day theme – independence – means to them. Lizelle called us right as she got off work – it was unseasonably cold in Winnipeg, and Kayla, who was hiding from another spring snowfall, was in Brantford, Ontario. Here’s what they had to say.

How has technology shaped your MS community? Is it as important to you to join online support groups as it is to attend in-person ones? And did you feel safer sharing your story online vs offline?

KAYLA: If it wasn’t for technology – our computers, smart phones and social media, I don’t know where I would be. For me, it made it really easy to connect with other people who have MS even though some of these people were across the world from me. The first person I ever met who had MS – because before I got diagnosed, I really had no idea what MS was –he lived all the way in New Jersey.

LIZELLE: No way!

K: And if I hadn’t had access to Twitter, I don’t think I would have been able to make that connection.

L: I think the internet has become such an accessible resource, but also such an important outlet for awareness. [Being online] has helped me keep up with research and, like you said, talk to people around the world who have MS. I’ve checked out #ChatMS – even just in the last 10 minutes it’s been so interesting. There might be a time when I’m working and I can’t be online for the whole thing, but when I get home, I can read through it all and it’s awesome. I love what you did with that, Kayla.

K: What time is it for you when #ChatMS happens?

L: It’s six o’clock my time.

K: For some people it’s like one or two in the morning. But if we were to do it any earlier, it wouldn’t work for us because many of us in Canada are working at that time. But on twitter everything lasts forever – so people can come back to it later which is nice. Like you just said – you might check it out when you get home, and that means the world to us.

L: It’s cool how you can tune in and out, but still be a part of it.

K: It’s awesome. It’s amazing. [Even when I can’t be there] it still goes on without me. It’s taken on a life of it’s own. But I don’t like to take credit. In fact, there shouldn’t even be any credit to take. It was just two friends who were miles away from each other – my buddy in DC and I – and if I can’t make it, I know he’ll hold it down for me, and vice versa. But everybody knows: Monday nights, we talk about multiple sclerosis. That’s just the way it is.

L: That’s so awesome.

Yes! It’s a fuzzy feeling to know that I’m not the only one who has what I have. #ChatMS https://t.co/RV5FE0tIvj

— Keep S'Myelin (@keep__smyelin) April 11, 2016

Was there anything that came out of the #ChatMS conversations that you didn’t expect to see, or anything that’s majorly shifted your views or opinions?

L: One of the things for me was actually – and Kayla, I think you started it – the whole #stopdropselfieforMS thing that started popping up last year. The way that just kind of trended everywhere and I was like, wait, this girl has MS…and she’s just as young as I am. It was a big moment for me.

K: I remember being at school one day at York University [in Toronto] and I heard people talking about #ChatMS. I went up to them and I was like, the MS community started it! The fact that it reached thousands of people was so cool to see. I wanted it to be millions but…

L: For me, it was like … we can do this!

K: When we come together, we can do anything. Regardless of the numbers, the fact that we can change one person’s mentality and understanding of MS and what it does to us – that’s what matters the most to me

L: Quality. Not quantity.

K: Exactly.

When you received your diagnosis of MS, did you see it as a young person’s disease?

L: When I was first diagnosed, like Kayla, I knew nothing about it. What I did know – or thought I knew – was that it didn’t affect people my age.

K: That’s what I thought too.

L: Right? When my doctor was giving me the facts, he was like “it’s a Caucasian disease. Usually affecting women fifty and over.” I remember thinking to myself: well, I have MS and I’m not anywhere near these demographics. And I think seeing Kayla and having all of this research and event information at my fingertips helped a lot.

K: I was told the same thing. I thought it was really rare to have MS in your twenties. My neurologist actually calls me junior because I’m his youngest patient. But there are so many people – who you and I both know – who don’t match those demographics. I think it can affect the best of us.

L: True.

K: I’ve come across teenagers as young as thirteen years old messaging me and telling me they’ve just been diagnosed with MS. A lot of the people who participate in #ChatMS are around my age – but it ranges from about 20 to 55 years old. So there is a mixture of age in the chats every Monday. That’s what makes it so great. We all have something in common. We can all communicate with each other regardless of our age or where we’re located. And that’s what I love about it. No matter who you are or what your beliefs are, we come together and talk about what we’re all connected by – which is MS.

How do you practice self-care?

L: I believe knowledge is power. Reading is so important. That’s what’s kept me up-to-date on the progress of MS research. And this keeps me feeling hopeful. Over the past few weeks I’ve been a little more active at the gym and taking classes like yoga. I find that has brought up my energy level and that’s something I want to maintain.

K: Me too! I just got a gym membership! It’s like, I need to do this!

L: Totally. And it makes a big difference.

K: And even talking about MS takes a huge weight off my shoulders. If I held everything in, I would just blow up.

L: I’m the same way.

K: My family is so supportive, don’t get me wrong. But sometimes they just don’t get it, because they don’t have [MS]. Talking to other people about how I feel and what I’m going through makes me feel better. Knowing that there is someone out there that has experienced what I’ve experienced – it helps me to know I’m not alone.

L: It’s come to the point where it’s a lot more sympathetic than empathetic. Like, I understand… but if you haven’t been there, it’s hard to know exactly what I mean. And that’s why it’s so important to find people who do have a better idea of what we may be going through. I felt a little safer online than I did offline.

K: I did too. I love my friends, but when you can relate to someone else, it opens up a whole new world. If I’m having a bad day, my friends will make sure the next day is better, but finding people who know first-hand what I might be going through is a different kind of support, and it’s been much easier to find that online.

Have you covered anything related to wellness through #ChatMS?

K: We cover all kinds of different topics. From symptoms, to wellbeing, to exercise, to mental stability, to socializing… we try to cover it all. We actually ask all of the participants what they want to talk about first. Like “choose your topic!” We don’t want to run it; we want our audience to own it. To talk about what’s been bothering them, or something that they’re going through. We’ve been doing this for over a year. We’re going to be doing it forever. So we are going to cover a lot of things.

L: I love when I reply to some of your questions like, hey! I experience this too! And you get all of these replies and retweets and I feel like, wow, this is more common than I thought. It was something I wanted to keep to myself, but when I open up to the community, it makes me realize it’s more common than I thought.

K: It gives me a sense of relief like, I don’t have to suffer in silence anymore. I should talk about it because somebody else may be going through it too.

Is there any one thing related to wellness that is at the top of your list? Something that works best for you?

L: Yoga

K: Sleep.

L: Okay, that’s true.

K: I am a total zombie without enough sleep. But actually, I’ve always wanted to try yoga. My friends are always on me about hot yoga because they all do it. But I try to stay away because, you know, overheating.

L: Exactly, I’m the same way.

K: I tried aquafit, and it was actually amazing. I need to do it again. Because it keeps our bodies cooler, but we’re still exercising.

L: I need to try that. But it’s true. My friends are always asking me to try hot yoga, and I have to say no, you do your thing, I’ll do mine.

K: It sucks so bad to not be able to go into the sauna after a workout…

And what about stigma surrounding MS when its perceived as a disability?

L: It’s all about perspective. Don’t be afraid to stand out. Don’t be afraid to speak up for yourself. I hid [my MS diagnosis] for a long time. And I think that’s why I felt so depressed and so alone as I approached my mid-twenties. I felt isolated because I never opened up to anybody. I never trusted myself to be like “Ok. You’re different. Accept it.”

K: At first I was a little shy about [having MS]. I didn’t want people to know about it. But then I came to a point where I couldn’t afford to be ashamed of it anymore. What I would say to someone who was just diagnosed is: don’t be afraid to reach out to people. Educate yourself using trust-worthy sources. And just know that It’s going to be okay. There’s other people out there that have what you have. And you will hit bumps in the road, but you’ve got to know that you’re going to be okay.

L: Exactly.

I’ve noticed that you both practice self-care by chatting online. It seems like that’s a method you both use to stay mentally sound, to help others that are affected by MS and to build a community where you can relate to people. Would you encourage the younger generation who are being diagnosed to join the online community?

K: I’ll get emails from people all the time who have just been diagnosed and they feel like they just don’t know what to do. If they’re located in Canada, I’ll be like, number one, you need to go to the MS Society website and get more information. Number two, it’s going to be okay. If you ever need to talk I’m here, and so are 2.5 million other people around the world.

You are both strong women who are not defined by ms. Are there other areas of your life that have been impacted by the ms community?

K: I try to continually educate myself about other disabilities so I can be more aware. If I want the world to be aware of MS, we all need to be open to being more aware of what everyone else is going through too. When a topic comes up, I try to learn about it so that I can better support it. My mom suffers from anxiety and depression and I want to be able to support her with that. That’s something that MS has taught me. If I’m going to be putting in all of this effort to raise awareness about MS, I should be doing that for other illnesses as well. It would feel kind of hypocritical to me if I wasn’t.

Someone recently brought up the concept of their own personal normal – that there isn’t a universal truth, or model of what you’re supposed to be. That it’s all just about trying to achieve your own version of your healthiest self. What do you think of that?

K: Everybody has a story to tell. Everyone has something going on in their lives. I’ve thought of that too, what is normal? Either we’re all normal…or there’s no such thing. Because we all have our own stories. Just because I have MS doesn’t mean I know everything about what other people are going through – their experience could feel just as bad to them as mine does to me – or maybe even worse!

What does independence mean to you?

L: For me, having symptoms at such a young age, and then being diagnosed seven years later and feeling isolated for so long, made me realize something had to change. I think through my weakness I found strength – and that strength is my independence. Just because I have MS, doesn’t mean it’s going to stop me from doing anything.

K: I totally love that. You took a dark moment, and you shone your own light on it. That’s something I hope to do as well. When I was diagnosed, the doctors told me to drop out of school, quit my job, find time for myself. And I was like no!  You know what? I’m not gonna do that! I was in my third year of university. I took two weeks off, but I wasn’t about to put my life to an end because I found out I have MS.

L: It was like that with my nursing career. I was told to put an end to it, and I was like, are you kidding me? [laughs]

K: I think a lot of people still think MS is exactly how it was 50 years ago. But it’s not! There’s no reason to drop out of school or change careers.

L: No kidding. There’s no need for that. [laughs].

That’s interesting because Evelyn Opal was told to give up in a lot of ways. Told she could never have kids, that there wasn’t much hope for a future, but she turned that around and started the MS Society of Canada. That was in 1948. What would you say to her now?

K: Oh my god, I would give her a big hug.

L: Me too. I would thank her.

K: Look where everything is today. In the 1940s, women were expected to be homemakers, but [Evelyn] went out and created something so important. One of my big questions was: can I still have children? Fortunately, the answer was yes. And that relieved a lot of my fears. But when I go to MS walk and I see the mothers who have their families with them – the ones who have MS – it brings me to tears.

L: That was one of the first questions I asked my doctor too. Can I still have kids?

K: One of the first people I met at the MS walk was a young mother who had four boys, and it was amazing to see that they all came out for her.

L: Waterworks, right?

L: Yes. Every year I cry at the walk.

K: We should try to make it to each other’s walks!

K: Sometimes during the chats I’ll be reading the responses and I’ll just be like, I love everybody, and just start bawling.

L: I feel the same way.

K: The first thing that I would show you at my MS Walk would be the A&W Bear. Number two would be – it’s at Downsview park in Toronto – and there is this big hill in the middle that people attempt to climb, I would want to help you get up that hill. We would do it together. And you would see the thousands of people who come to join and walk for each other. That support is just so amazing to see.

L: I just got chills. It’s pretty flat here in Winnipeg. But I would want to show you the unity here. The red shirts, and just everything they do to show solidarity, really.

K: When I make it to Winnipeg, I’m definitely giving you a call. Do you have any friends that you see on a regular basis that actually have MS?

L: I actually don’t. That’s why I feel so much better having an online presence. The only people my friends know who have MS are their great aunts. And I don’t always know how to relate to that.

K: Most of my MS friends all come from online. We communicate all the time. And my questions get answered online.

So you’re all across the country with miles between you – but you still feel connected?

K: Well, we always have each other’s backs. We’re always there for each other. We all want more people to know what MS is, so we need to keep talking about it. We have to communicate with each other. We need to connect.

L: And keep sending those letters to our elected officials! Trudeau needs to be at the next #ChatMS!

K: And Amy Schumer! I love her! I think she’s hilarious, and she helps the community out a lot. Montel Williams…

L: It gives us access to people we wouldn’t otherwise have access to. Our Mayor has been really good – Brian Bowman took part in MS bike this year.

K: I want John Tory at our walk. I’m just excited to see who else we get to host future #ChatMS sessions! There are so many possibilities!

Born and raised in Winnipeg, Lizelle is a veteran MS ambassador and volunteer in the MS community. She is a full-time nursing student who dreams of getting into public health and advocating on behalf of others with neurological diseases like MS, and works as a receptionist to pay the bills. You should follow her on Twitter and Instagram.

Kayla is an #MSWalk ambassador. She is the CEO of SMyelin Media Inc., a social media specialist, and an MS advocate. She lives in Woodbridge, ON, with her parents and loves coffee. And you should follow her on Twitter and Instagram, too.

As we move into #MSWalk season, we will be sharing more of her story, and stories from other #MSWalk ambassadors across Canada. You can be like them and sign up for your local #MSWalk today. Tell us in the comments: who do you walk for?