Deafblind Techie

Around Usher Syndrome Awareness Day, I find myself reflecting. This is my realization. It begins from day one, really — the moment I was diagnosed — but it didn’t fully hit me until I turned sixteen. The years between then and now — three years — have only strengthened this understanding. For years, I barely noticed the changes. Then sixteen arrived, and the truth hit me: my world wasn’t the same anymore, and neither was I. Sixteen changed everything. The rules I trusted — gone. But it didn’t end my story. It just started a new one. Usher Syndrome doesn’t care how old you are. It doesn’t care about your dreams. It barges in, changes the rules, flips the world you thought you understood. At first, it feels like that’s all there is — new rules you didn’t ask for, limitations you didn’t choose. Rules that leave you scrambling, wondering if life will ever feel familiar again. But here’s the thing: those rules? They’re just the beginning. Yes, they feel daunting. Yes, they shake...

Darkness has always felt like a contradiction to me: part threat, part refuge. And now feels like the right moment to share these thoughts—as the days shorten and we edge toward the clocks going backwards for winter. Being alone at night can be utterly terrifying—filled with uncertainty, hidden dangers, and a suffocating sense of unease. While I could go out alone at night if I absolutely needed to, it’s not something I would ever choose to do. There would always be someone else there willing to guide me. Even if I know the route by heart and could technically walk it alone, I still move closer to the person guiding me. The dark adds strain: scanning for obstacles like overhanging branches or bins sticking out on the pavement, flinching at sudden voices of passersby that appear without warning. The street at night feels unpredictable—every shadow a question mark. And yet, at the same time, there’s something deeply calming about the stillness that darkness brings after a long, chaotic ...

🏕️ USHthis UK Camp 2025 – My Fourth Year, My Second as a Mentor Last Saturday, on the 26th of July, I travelled down to Fairplay House in Essex for my fourth USHthis UK camp — and my second year attending as a Mentor . 🌍 A Global Movement with Local Magic USH This began in the US back in 2019 and made its way across the pond in 2022 , with the first UK camp held at Ghyll Head House in the Lake District . I’m so thankful it did. This camp is crazy and chaotic , in the very best way. It’s a place where time is but a concept , sleep is rare , and fun is constant . It’s loud, energetic, emotional , and above all, it’s a space where those of us with Usher syndrome can just be ourselves , completely and unapologetically. 💥 Adventures, Baking & New Challenges With the support of our amazing Hearing and Sighted staff and volunteers , we pushed ourselves to new heights — literally. We climbed the high ropes course , plunged into lakes at the inflatable water park , and embraced brill...