“I remember being in ninth grade and feeling like I was running in quicksand during gym class. By tenth grade, I was having trouble climbing stairs. I did everything to hide it. I’d purposely be late to every class that wasn’t on the ground floor so I could have the stairwell to myself and drag my body along it in private. I already felt like an outcast simply for being Asian in a Caucasian-dominant school — I wasn’t going to give people another reason to pick on me.
It was a very confusing time and it wasn’t any easier at home. My immigrant family was understandably more concerned with putting food on the table and ensuring I got good grades than anything else. Mental health didn’t exist as a concept in families like mine. I don’t blame them, though. I had no idea what was ‘wrong’ with me so I didn’t know how to talk about it.
I don’t know how long I would’ve ignored what was happening within me if my oldest brother, who lived a city away, hadn’t been diagnosed with limb-girdle muscular dystrophy (LGMD). I was almost 18 when he came home for a visit. He noticed the way I was walking and told me I needed to see his doctor.
It was quickly confirmed that I had the same condition as him. I learned it was a rare progressive disease and that there was no cure for it. The doctor told me that I was eventually going to lose the ability to walk entirely and that I should start planning my future and career around that.
There’s no way to process or understand the gravity of that kind of news when you’re a teenager, so I continued on as if it didn’t exist. I was in denial.
Slowly, though, I noticed my symptoms worsening, and I realized I did need to plan for my future. When choosing universities, I picked OCADU because of its campus accessibility. Despite this, I continued to hide my condition throughout undergrad to try to live as ‘normal’ a life as possible. By 2018, the day finally came when I felt I needed to come out of the disability closet. I could no longer hide it — I was noticeably struggling to walk independently.
“It’s funny because I had spent a lot of energy trying to be invisible and now I’m actively making myself visible — disability and all.”
I hid my symptoms for almost 13 years before disclosing my diagnosis on social media. Only close friends and family knew what I was going through, so announcing it publicly to acquaintances and strangers was petrifying. But when I started talking openly about living with LGMD, the most surprising thing happened: not only were the responses positive and encouraging, but I felt immense relief. I’d been so worried that no one would accept me, but within the year, I found myself sharing my story with NOW Magazine, Yahoo Style, and Sickboy Podcast. It all happened so fast. It’s funny because I had spent a lot of energy trying to be invisible and now I’m actively making myself visible — disability and all.
Last year, I got my first power wheelchair. I try to show my mobility aids in photos because you wouldn’t be able to tell that I’m disabled otherwise, and I want people to see it. During my early years of diagnosis, I was looking for people like me online. I discovered only two content creators who had muscular dystrophy. It was so important to see that representation because I felt so alone. Now, I have younger people reaching out to me saying I’m filling that same role for them. Finding my community online has been one of the best things that has come from having a disability.
My disease may be rare but disability is a universal experience. The disabled community needs to amplify our voices because the world isn’t made to include us, and people often speak for us. It’s easy to feel empathy for a split second but it’s harder to turn that empathy into lasting change, which is what makes the world a more inclusive and accessible place. That is the real work we all need to do.
I can confidently say that now that I’m in my early thirties, I’m unapologetically me. It took work to get here but I’ll no longer pretend that I’m able-bodied. I won’t pretend that I’m ‘normal.’ And I won’t pretend that I’m not scared. Living with LGMD impacts my daily life and it’s challenging not knowing what my future will look like, but I’ve learned to take it day by day.”
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