Micaela’s Style: Writing Away SMA

MICAELA 

“I love making a difference through my writing. It’s a big part of everything I do.”

Micaela is a sought-after writer seeking to script words with weight.

As a dedicated student pursuing a double major degree in Communications & Gender, Sexuality, and Women’s Studies, a current journalist and columnist at The Peak SFU, and a disability research worker for the Simon Fraser Student Society, calling Micaela’s schedule “busy” is an understatement.

When she’s not working, Micaela generously volunteers her time and talents to non-profit organizations that are close to her heart. She is the communications coordinator for the Greater Vancouver Chapter of Muscular Dystrophy Canada and an assistant editor of an online mental health magazine called the Libero Network. At her university, Micaela has volunteered as a Residence Life Orientation Leader. Last year, she co-founded Campus Cursive, an extension of a movement called The World Needs More Love Letters. This non-profit organization “harnesses the power of social media and peoples’ generosity to send and leave handwritten notes for people in need.”

“We get together at Starbucks, drink coffee, and write love letters for strangers to find,” she said with a smile.

Micaela is dedicated, kind-hearted, and driven to creating a positive impact in her community. On a daily basis, she lives with Spinal Musclar Atrophy (SMA), a genetic neuromuscular disease. Micaela explained that it affects one’s voluntary muscles, but that there are varying types of the disease with ranging degrees of involvement.

“It’s fairly common, but not a lot of people know about it.”

Micaela carries her passion for words into her fashion style. She wears beautiful accessories with meaningful phrases and sentimental value.

Her bracelet, reading “diversity, community, courage,” along with other statements, was a gift from a dear friend. Her necklace, engraved with the word ‘strength,’ is from The Giving Keys project.

She also has a gorgeous tattoo. In a bustling coffee shop, Micaela so eloquently articulated the importance of acknowledging our past struggles and the ways they shape us into who we are today.

Micaela’s beautiful tattoo: “Love the mud that once transformed you.”

Her tattoo is a reminder that others share her story. The words of her tattoo come from author Hannah Brencher, the founder of The World Needs More Love Letters. Micaela revealed the full writing piece to me:Micaela recalls times where she wore uncomfortable clothing because it looked nice. Lately, however, she has gravitated towards softer, flowing materials that are both flexible and flattering.

“I wear a lot of crop tops because they make me look taller. High-waisted bottoms are nice too. I don’t wear a lot of jeans because they are restricting and stiff to wear while sitting all the time.”

Throughout the summer, Micaela likes to keep cool by wearing dresses, skirts, and linen pants.

Quick Questions with Micaela:

Can you tell me about a time you have surprised yourself with what you’ve accomplished?

I just went through a surgery a couple months ago, and my body was so strong that it recovered more quickly than expected. So, now I’m able to work and study throughout the summer in a place I love.

What is something that people might be surprised to learn about you?

I love working out! People may assume that I can “barely move,” but I love exercising. With my disease, we can’t get “buff,” but we can get stronger and strive to maintain that strength. I’m working on building my strength back to what it was before my surgery.

What advice would you give to others who are also living with SMA?

I was never encouraged to branch out and go to Vancouver or move to the city. It wasn’t expected that I would move out, live on my own, and be independent. It was assumed that I would stay in my comfort zone and live in the same place forever. My Mom really helped me get together the support resources I needed to live independently. It was a lot of work, and I wasn’t sure that I would attend university until a few months before I started. But, I made it work.

What has helped you feel better emotionally along this journey?

I have amazing friends here. I know that if I ever have an issue, I can call several people, and they would all be there to support me.

Where do people stumble with their language and understanding about SMA or disability?

There seem to be two areas:

  • People assume that if you’re in a wheelchair, you’re paralyzed. They assume that you have a completely strong upper body and that you can’t move your legs. However, I can move my legs, but not my arms as much. They don’t understand that there’s a wide spectrum of [situations] rather than just one…where everyone in a wheelchair is the same.
  • People are afraid to mention it. They don’t want to be politically incorrect or rude. I always tell my friends that if they want to know something, they can ask questions rather than make assumptions.

It would be great to see that people weren’t afraid to know someone and their abilities.

Before we parted ways, I noticed a sticker on the back of Micaela’s wheelchair that read “Never Give Up.” It was a heartwarming summary of the remarkable resilience and constant compassion she demonstrates each day. Finally, I asked Micaela what she is most proud of given her considerable accomplishments over the years.

“I like where I am right now,” she replied.  “I have an amazing group of friends, I’m in a city I love, and I’m involved in so much that relates to my passion of writing.”

 

Centre photo courtesy of Erika Loggin.
Centre photo courtesy of Erika Loggin.