Meet Maggie, who shares her daily experience living with Usher Syndrome Type 1C. Maggie’s story gives a rare, personal insight into the challenges of navigating vision loss, profound deafness, and absent balance organs — a “triple threat” that shapes her daily life.
Maggie describes vision as a shrinking tunnel, hearing as a full-body activity, and balance as an invisible negotiation. Walking, listening, and interacting with the world requires constant recalculation, mental focus, and energy. Despite these challenges, she thrives, travels widely, and contributes to advocacy and research with UsherKids Australia.
Her story reminds us that while Usher Syndrome shapes experiences, it does not define a person. Maggie’s resilience, creativity, and commitment to helping others show that growth and gratitude can coexist with the realities of living with a rare condition.
“I’m blind – but not blind. Deaf – but not deaf. Off-balance – but always trying to stay upright. It’s a grind. It’s hard work. But proving we can do it anyway? That’s what I’m about.”
Read Maggie’s full story below:
Usher Syndrome: The Stuff You Don’t Read in the Brochure
I thought that this would be a perfect place to start. Whilst Usher Syndrome does not define me, it is a big part of my “how”. When I meet new people – or even when I am catching up with old friends – there’s often too much data to really convey what my daily experience actually feels like.
So consider this my personal, unauthorised Usher Syndrome Type 1C Brochure. Usher Syndrome Type 1C is a rare genetic “triple threat” involving retinitis pigmentosa (deteriorating peripheral vision and night blindness), profound deafness, and nonexistent balance organs. But on the ground, it just feels like living in a body that is constantly trying to keep up. I’m blind – but not blind. Deaf – but not deaf. Off-balance – but always trying to stay upright.
Ushers doesn’t just chip away at your senses; it rewires how you move through the world. And this rewiring looks different across its three battlegrounds:
Vision: The Shrinking Tunnel
Retinitis Pigmentosa (RP), which has currently left me with a 10-15 degree field of vision. To put that into perspective, the average person has approximately 100 degrees just to drive a car. Maggie with a drivers license? Never heard of her.
RP also brings a fun little paradox: light sensitivity paired with night blindness. On any given Melbourne day, I have two choices: 1. Burn my eyeballs under the sun, squinting for dear life; or 2. Wear sunnies that means it’s too dark to see properly anyway. The moment the sun hits the horizon, details disappear, and it feels like I’ve got sunglasses on anyway.
When I was diagnosed at thirteen, I was told I’d likely be blind by the time I turned thirty. While I remain positive, it’s the reason I’m not exactly scrolling through real estate apps for a fixed address. I’d rather spend that money traveling and seeing as much of the world as I can while the “tunnel” is still open. It requires a level of focus most people will never have to experience, but the view is worth the effort.
Hearing: The one sided data stream
I was born profoundly deaf and use a cochlear implant on my left side to hear. So, if I suddenly beeline to the right end of the table or swap sides with you mid-walk, I’m not trying to protect you from traffic – I’m just trying to hear what you’re saying. I am definitely not the best choice for a human shield.
Cochlear technology and years of speech pathology allow me to speak well, but “listening” is a full-body sport for me. It involves a lot of lip-reading. God forbid you have a scruffy beard, you mumble, or we find ourselves in another global pandemic where masks are literally masking your ability to hear.
Hearing fatigue is also very real. You might notice me at brunch being lively for the first 30 minutes, then suddenly zoning out. It’s not the company – it’s just that my “battery” for processing sound has run out. Also, a pro-tip: because I only have one implant, I have zero directional hearing. Yelling “over here!” is about as useful as a chocolate teapot.
Balance: The Invisible Negotiation
This component of Usher is unique to Type 1 – lucky us. Balance is invisible, but it shapes my entire existence. As I’ve learned across multiple university lectures, the average person relies on a complex system of tiny vestibular structures in the inner ear to reference their location in space.
In my case, those structures simply don’t exist. I don’t have the ‘internal gyroscope’ that tells most people which way is up. To put that in perspective: I physically cannot get dizzy. While that was a massive plus on the playground as a child, in the real world, it means it is often impossible for me to sense where I am in space at any given moment.
Because my internal data is missing, balance becomes a desperate team effort between my hearing and my vision to help me out. Since those are also impaired, every single step becomes a high-stakes negotiation.
This creates a mental and physical tax that is nearly impossible to describe. I am not lazy, and I am not anti-social. It just takes a mammoth amount of energy to walk for even 10 minutes on the uneven cobblestones of Melbourne. When people watch me walk, the self-consciousness hits hard. I know I look unsteady or awkward—like I’ve had a few too many at the bar when I haven’t touched a drop.
I don’t hate the walk because I’m embarrassed of Usher; I hate it because I wish people knew that the ‘drunk walk’ is actually just a body doing its absolute best with zero balance data to rely on
The High-Stakes Walk-and-Talk: A Masterclass in Recalculation
The three battlegrounds are tough on their own, but what happens when you want to walk and talk at the same time? That’s a new war altogether.
Imagine walking next to me. I need to lip-read to understand you, so I’m looking at your face. But I have no peripheral vision, so I also need to look forward… and down… to avoid the bollards and pedestrians populating the city. Sometimes it feels like a game of dodgem cars, using you and the people walking past as rebound platforms.
My brain cannot process conversation and stability simultaneously. If I focus on staying upright, words slip away. If I try to listen, my steps falter. My brain is constantly in survival mode, running calculations just to keep me oriented.
Ushers: The Truth
Well, that’s the truth. This is my world. It’s not broken – it’s just wired differently. And yes, I am tired.
But I am also incredibly grateful. Not many people can say they travel the world competing in a sport they love. Getting to work with organisations like UsherKids Australia and the Centre of Eye Research Australia to help kids who are navigating these same sensory disabilities is incredibly gratifying.
I’ve learned that finding growth in the pain and being grateful for where our unique lives take us is where ‘real life’ actually happens.
I’m blind – but not blind. Deaf – but not deaf. Off-balance – but always trying to stay upright. And so now you know why I’m tired
It’s a grind. It’s hard work. But proving we can do it anyway? That’s what I’m about.
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