My Usher Syndrome Story
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| Anna aged 16 months just after cochlear implant surgery. |
What I do remember is the frustration when the batteries would die. I’d just want to play with my friends, and suddenly my world would go silent. That feeling never really went away — it followed me from infant school all the way to sixth form.
Ironically, some of those same friends are still in my life today — and they’ve pretty much appointed themselves my personal battery monitors!
Early Support
I’m lucky to have parents who put in countless hours of speech therapy. These days, most people don’t even realise I’m deaf unless I bring it up — usually during a laugh over the words I still can’t pronounce properly. (It’s a good reminder of how far I’ve come.) From sounds like th and f to words like shoulder, soldier, and solder — it’s always entertaining.
My parents were always honest with me about my diagnosis, but I don’t think I really understood what it meant — especially the part where I could one day go blind.
Night Blindness and the Long Cane
With Type 1 Usher syndrome, night blindness is expected.
I’ll never forget the moment I realised other people could actually see in the dark. It was during a Year 6 school trip. We were walking back to the dorms at night, and I was stumbling along, assuming everyone else was struggling too — until I saw how easily my classmates were moving. I was stunned:
“Wait… you can SEE?!”
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| Anna navigating Germany with her cane. |
That same year, I started formal long cane training. At first, I only used it in busy places like shopping centres or airports. I didn’t feel like I needed it all the time — and honestly, I was self-conscious about it. I mostly used it when my parents insisted I practise.
Adapting at School
Around that time, I started having issues with glare and contrast. Text in my workbooks became hard to read, and PowerPoints in class were nearly impossible to follow. It became clear I needed extra support to keep up.
We introduced several adaptations:
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Yellow paper for handouts
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An iPad with screen-mirroring software
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Enlarged work prepared by my teaching assistant
This setup worked well for a while, but it evolved over time. In Year 9, I switched to lilac paper, got a laptop for schoolwork, and started using digital workbooks — much easier for me to read. By sixth form, I refined everything further: bold text, size 32 font, and tactile diagrams became my go-to tools. The iPad remained a constant, helping me access lessons and work more independently.
A Wake-Up Call
It wasn’t until Year 10 or 11 that the reality of my sight loss really hit me.
I was walking home from school on bin day. The bin men in our area have a knack for turning the pavement into a maze. I was weaving through the bins when suddenly — I was on the ground.
Luckily, it was just a sprained wrist. But I couldn’t figure out what I’d tripped on.
Later, it hit me: I hadn’t seen the empty blue glass bin sitting right in the middle of the path.
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| Anna using her cane on bin day, walking to school while first learning back in Year 7. |
That was my wake-up call.
After my wrist healed, I started using my long cane more regularly. It wasn’t easy, but I quickly realised how much independence I’d regained — independence I hadn’t even realised I’d lost.
Funnily enough, those same bin men now help me out. They’ll let me know when it’s safe to cross or give me a heads-up about obstacles. The irony isn’t lost on me.
Finding My People
Changing schools for sixth form after my GCSEs was one of the best decisions I’ve ever made.
I didn’t know it at the time, but there were five other visually impaired students at my new (mainstream) school. Meeting them changed everything. They all had different levels of sight loss — two were completely blind — but they were confident, bold, and unapologetically themselves. Being around them inspired me.
When I joined, I had the second-best vision in the group. By the end of Year 12, I had the third-worst. Only the two fully blind students had less usable sight than me.
I’ll never forget the day the school’s VI teacher came to test my vision. She ran a highlighter just below my nose — and I couldn’t see it.
She paused, clearly unsure how to phrase it gently. I cut in and said,
“Just say it bluntly.”
So she did:
“You’re basically blind. Right now, you’re a health and safety hazard.”
She recommended I be guided around school until I received proper rehabilitation training.
It was a tough pill to swallow — but that moment marked a turning point. I began approaching my vision loss with more awareness and less fear.
Redefining What’s Possible
If there’s one thing I’ve learned, it’s this: hearing and sight loss aren’t just challenges — they’re part of who I am. And they can be strengths.
People don’t expect someone like me to enjoy music, have conversations with hearing people, or travel independently.
But I do. And I thrive.
My biggest message? Don’t let other people’s expectations box you in.
Want to go axe throwing? Go.
Want to travel? Do it.
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| Anna aged 13 using a purple cane at an Xmas event with her brother. |
Disability isn’t about what you can’t do — it’s about how you adapt and redefine what’s possible.
Embracing Tools, Tech, and the Journey
These days, I’ve embraced every challenge that comes with Usher syndrome.
I’ve learned how to use mobility aids, found tools to navigate the world, and made tech work for me. My cane? It’s decorated — and it boosts my confidence, not just my safety.
Right now, I’ve just achieved an HNC in Cyber Security and Networking, and I’m learning to use public buses independently for the first time.
There’s still a lot ahead of me — but I know this is only the beginning.
Final Thoughts
Living with Usher syndrome has taught me to take life head-on and hold the reins tightly.
The challenges are real — but they don’t define me.
I do.
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