Finding a Safe Space
Heidi Pylypjuk is an accomplished academic, athlete and lover of animals. One of her proudest accomplishments is Baba’s Backyard, a space created in memory of her grandmother.
“Baba's backyard is my safe space. It's actually where I grew up. ‘Baba’ means ‘grandma’ in Ukrainian. And I was really lucky to grow up with my Baba. Baba’s backyard is an animal farm. Animal’s bring me joy, just like my Baba did. That’s why I made the space in her memory.”
“It’s a safe space for me but I want to be a safe space for other people too. I understand what it feels like to not have a voice. It feels like you're almost trapped in your own body. You don't know what to do. If I help people feel even a fraction of how safe I feel in this space, it'll be worth it.”
“Being diagnosed young means you’re still trying to find your identity while dealing with MS. But that doesn’t have to be your story.”
Diagnosed at 12
“I first noticed symptoms when I was about 11. I had facial paralysis on the one side of my face, so they thought I had Bell’s Palsy. While I was playing in the National Ringette championship, I noticed something was off. I ended up getting diagnosed at 12.”
Heidi is the only one diagnosed with MS in her family, which made it even more difficult to accept.
“I kept wondering why I had MS. Why was I the first person in my family to have it? Then I thought, maybe God decided one person in our whole family had to have it and he picked me. But as long as I have it, and no one else around me has it then I’m OK, I'll take it. I'll take one for the team.”
“Some people have different opinions about being diagnosed young. Some people think that being diagnosed younger is better because you don’t have an established career or dreams that you have to give up. Other people think it’s sad because you lose your childhood. I think it doesn't matter what age or stage you are, MS shakes your world.”
After diagnosis, Heidi had to overcome a few hurdles, like giving up playing sports. It was a really tough decision to make for her and her family. But she decided that she can still be part of sports by coaching instead of playing.
Although MS can be challenging, Heidi believes you don’t have to go through it alone. That’s why Heidi and another friend (who was also diagnosed with MS) created the YAS connect group for young people living with MS.
“We started a group called YAS just because some people don't want to have the title of MS or they don’t want people to know they have MS. So, we didn’t use ‘MS’ in the title of the group.”
“If you can’t run, walk. If you can't walk, crawl. Martin Luther King said it. You have to keep moving forward.”
Heidi finds that being authentic about her MS works best for her.
“I'm more open about it now. And it helps. I find that I do better at job interviews when I’m authentic about who I am. But if you're newly diagnosed and you find it challenging to speak about your MS, then don’t. That’s ok too.”
Heidi has been involved in research for over a decade. She has done a lot of research for Children's Hospital Research Institute in Manitoba, where she was diagnosed 20 years ago. She specializes in pediatric chronic pain and youth with severe disabilities.
My MS, My Rules
“I really like the My Rules campaign. Because when you say it like that, it reminds you that you are in charge. The truth is MS is scary, it’s hard and it’s a process. It’s not so simple. You have to do what works for you. You have to take your time to get to know yourself. It sounds simple but it isn’t simple. That’s why you have to do it your way. It is your path, your story, your journey. No one else’s.”
Heidi’s story is helping create a safe space for more people living with MS to share their stories openly. She’s one of the many people challenging what it means to live with MS.
Keeping track of MS symptoms
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