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Living with MS as a 20-something, part 1

Amanda, Juan and Lizelle have more than a few things in common: they are all unstoppable forces in this world and they’ve all faced the challenges of being a young person affected by MS. They are also all A&W inspirational champions and have worked hard to spread awareness of what it’s like to live with MS across Canada – which Juan will be doing for Burgers to Beat MS on August 25.

We recently got on the phone with them to talk careers, ambitions, obstacles and successes. This is part 1 of 2. Read the second half here. 

Amanda Piron (AP): So, Lizelle and Juan, as little kids, what did you always want to be when you grew up?

Lizelle Mendoza (LM): I think I’ve always wanted to become a nurse. I started experiencing MS symptoms so young that I practically lived at the hospital, and I really admired how the staff took care of me so much. I remember my mom telling me that they were called nurses, and I told myself then and there that I wanted to be one when I was older because I really looked up to them.

Juan Garrido (JG): As a kid, I always wanted to be a teacher. I thought it was really cool to be able to help people, and I really liked talking in front of groups, so I thought it would be fun to do that all day.

AP: Okay, so nurse, teacher… man, you were such focused kids! When I was a kid I wanted to be everything. I wanted to be the prime minister of Canada, I wanted to be on the Olympic softball team, and then I saw The Lion King in grade five and wanted to be an actor! I was all over the map. I’m so impressed with how focused you both were! Juan, after seeing your TED Talk, I can confidently say that you’d make a great teacher!

LM: I totally agree. That talk was amazing, Juan!

JG: Thanks! So we had all these dreams. When you were diagnosed, did that change at all? Did you change your path or anything?

AP: After I was diagnosed, I couldn’t play softball anymore. I tried to play and realized I couldn’t anymore because I can’t run. But I actually did go on to pursue acting. I’ve had an agent and worked professionally as an actor. MS definitely stopped me from at least one of my dreams, but I can still be a coach!

When I was first diagnosed, I was fresh out of high school and I was definitely still optimistic that nursing would happen for me. It wasn’t until my third year of nursing school that the staff asked me to withdraw from the program when I tried to appeal a mark. I had failed a written exam by 1.3% because I didn’t answer one of the long question answers the way they would have liked. In retrospect, I think it had a lot to do with the impact MS had on my cognitive abilities, in particular the fact that I can’t always articulate my thoughts in writing. So last year I had to withdraw from nursing.

JG: I’m sorry to hear that.

LM: I’m not giving up hope, though. Nursing is still going to happen, it’s just going to take me a little longer.

JG: For me, MS never directly affected my career path, but the week after my diagnosis, I also learned that I didn’t get into teacher’s college. So that was not my best week. I kind of spent the next few months in limbo, not really sure what my life was about. I had been so focused for so long, and everything got turned upside down so fast. So MS didn’t directly affect my career, but it definitely added so much anxiety. It was like, what’s happening? My life is falling apart. All of which led me to redirect my career path.

LM: So Amanda, how have you had to adapt and change your career ambitions and trajectory because of living with MS?

AP: Mobility is a big issue for me. I shifted my focus away from the things I couldn’t do because that list is really long and really upsetting for me. Instead I started focusing on what I can do. I stopped apologizing for being different all the time, and once I made that change, I naturally fell into acting. I had a relapse halfway through my theatre program, and I was told I would never finish. But that didn’t stop me, and that led to my discovery that there was a lot of backstage work I enjoyed doing.

For me, after that summer when my life kind of fell apart, I worked part time for York University and found a lot of support from my supervisors and bosses there. I started to realize that they had a job that involved mentoring and supporting students and being there for them, and that’s the thing I’ve always liked about teaching. What I’m doing now at the university administration is making sure students have a positive university experience. Because whether you’re diagnosed with MS or just having a hard time getting through university, it’s important that someone is there for you.

LM: That’s awesome! Juan, can you just help me through nursing school? I wish you were here! You both inspire me in such a way that I don’t know how to put into words!

JG: Thanks for that, but also you, Lizelle! I threw in the towel on my teaching dream, and that happened for a reason, but the fact that you’re just like, “No! I’m going for it!” is awesome! No matter how long it takes you, and wherever you end up, it’ll be great because you’ll have worked so hard to get there.

LM: It has definitely been a struggle, and I’ve become really depressed sometimes. I’ve just decided not to let my MS get in the way of me achieving my dreams. Actually, I just received my acceptance into a Licensed Practical Nursing program at a community college here in Manitoba that I’m determined to complete no matter what it takes!

JG: Congratulations!

AP: Juan, how do you deal with the question of when or whether to tell your employer about your MS?

JG: I think you once said, Amanda, that it’s always one of the first things out of your mouth, and it’s the same with me. The first thing on the volunteer portion of my resume is the MS Society, so it often comes up in conversation, and I’m always willing to talk about it because it’s such a profound part of my life. Being open about it and helping other people learn about it is my own personal way of coping with my diagnosis. Everyone processes things differently, so I would never expect other people to talk about it as openly if that’s not their way, but for me that’s always been an easy decision.

AP: Lizelle, what about you?

LM: I’m in the same boat as Juan; I’m super open about my diagnosis at work. I used to be really scared about what people would think of me, or whether I’d be stigmatized and looked at differently. But honestly, my employer has been really accommodating. Everyone knows how involved I am with the MS Society and sometimes someone will ask me why I’m so involved, and I answer, “Well… I have MS.”

JG: It’s interesting that you said you were scared of the stigma or what people would think of you, because my first neurologist told me I shouldn’t tell anyone, especially at work.

LM: You’re kidding!

JG: Nope. He said, “Don’t tell too many people so you don’t have to deal with the stigma and all that.” That really didn’t help as I was spiralling during those first few months, because talking to people is how I deal with things. Eventually I let that advice go because I really was not feeling supported not being able to tell anyone, so I just told everyone.

AP: You have to honour who you are, right? You have to take care of yourself. When I was student teaching, I met a guidance counsellor who had MS, and she said, “Don’t tell them until you get a job with a school board!” I was already nervous, but then I was terrified that I was never going to get work. But for me it became about how I have the conversation. If you can wake up and say, “I have MS” and you know what you want, what you need, and what you bring to the table, I think you have more control over the conversation.

JG / LM: Same!

JG: Have either of you ever had to ask for workplace accommodations or adaptations? I feel that’s such a different conversation than, “I have MS.” It’s, “Because of my MS, I will need XYZ.” Have either of you had to do that?

AP: The thing about MS is that it’s not your ability to work, it’s your capacity to work that’s affected. You can say that you have any disease, but once you have to involve them in what you need, they don’t want to take on any extra tasks. I walked into the conversation with my employer and said, “These are the things that I need: if it’s a good day, that’s plan A; if it’s a mediocre day, it’s plan B and I can come in but I might need you to relieve me for a moment while I take a break; and if it’s a plan C day, it means I’m sick and I can’t come in and you need to get a supply teacher to cover for me.” My employer realized that I had done all the work in creating the plan, and she was very receptive. Lizelle, what about you?

LM: I have not had to go through with asking for any accommodations yet. I’m very open with my boss as well, but thankfully it just hasn’t come to that point.

JG: Asking for accommodations wasn’t a concern for me until I had a relapse that lasted about two weeks. I moved back home to my parents’ place because I was so sick and couldn’t move. I ended up sitting down with my boss when I got back to work and made a plan for moving forward. Having that conversation was really helpful and since then I have been lucky and haven’t had to ask for a lot of accommodations, except for when I have doctor’s appointments and need time off. I think, though, that now that I know I need to have those conversations, I come into things immediately saying that MS is very unpredictable and what I need right now may be different from what I might need in the future.

Read the rest of the conversation here! 

On August 25, visit your local A&W for a Teen Burger and $1 will be donated to fund MS research in Canada. Since 2009, A&W has raised more than $8 million to support world-class MS research that is bringing us closer to a cure, and programs and services that help Canadians with MS live better lives until a cure is found.

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