Mara's story

Retinitis Pigmentosa (RP) + Usher Syndrome

Mara Hutchinson is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Mara is a TV reporter, disability advocate, and lifestyle creator who uses her platform to break stigma and spread awareness for those impacted by vision-related rare diseases, like herself.

Mississauga, Ontario

You’re going blind. There’s nothing we can do.” 

When the retina specialist said those words to me in February of 2011, my world collapsed. I remember asking my fiancé, “Do you even still want to marry me? What kind of life would we have?”

It felt like retinitis pigmentosa and Usher syndrome weren’t just taking my vision from me, they were taking everything. I was so scared and I wanted my life to end. I felt it was already over. It took me a long time to recognize that the name for what I was experiencing was grief. I was grieving my independence and the future I had imagined for myself. For two years I struggled in a deep well of depression. Those years were impossibly dark for me. It’s hard to think back on them now.

And though my husband — who had indeed still wanted to marry me after all — tried so many times to help, I wasn’t ready to be helped — until one day he came home from work and found me sitting alone in a room crying. I don’t know what was different that day, but when he spoke to me then, it reached me. “Who’s missing out right now?” he asked. “Life is still going on, the world is still going on, and you’re the one missing it.”

It was then that I realized we could still have the life that we wanted for ourselves. The life we deserved. Travel, a social life, even a family. My vanishing vision and growing disability made many things harder, but they didn’t have to make things impossible. Unless I let them. I picked up the white cane that I had long been too embarrassed to carry and I started figuring out how to live as a legally blind person, how to own it. And we soon welcomed our son Bronx.

“To live this better life, I needed to embrace it.”

I had been so reluctant to use the white cane in public, because I hated the idea of people noticing it, looking at me weird, whispering about me. But to live this better life, I needed to embrace it. And people did notice, but in a way I never would have imagined. People started seeing my posts on social media — seeing me unapologetically living my life and doing what I loved, cane front and centre — and they started to feel empowered. I’ve had people reach out to me from all over the world, saying things like, “You helped me pick up my cane.” That absolutely makes my day.

It’s still hard and frustrating sometimes, of course, especially in the winter. People underestimate how much the snow and ice here in Canada can limit the independence and freedom of someone dependent on a cane. But I live my life. I create content about the things I care about — motherhood, food, fashion, travel — and I don’t hide my disability. Sometimes I’m directly advocating for those with blindness, low vision, and other disabilities or rare diseases. And sometimes I’m just sharing my joy, but that’s a kind of advocacy, too. I think there’s power in seeing a legally blind person living a grand adventure. It reminds people that we’re more than our disability. That we deserve it all.

It’s a message I’m sending out to the world, but also sending back in time to myself. To that decade-ago version of me who thought her life was over. I want her to know that the best, for her, is yet to come."