Never Forget Who You Are
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
About me:
My name is Tony. I have cerebellar ataxia — Friedreich’s Ataxia, a degenerative disease. Today, I am a person with a disability. I use a wheelchair. I’m a Brazilian writer and advocate living in Salvador, Bahia, and I try to show people that, even with limitations: Never forget who you are.
The Beginning of my Story:
Until I was about 8 years old, I didn’t show any clear symptoms — at least, that’s what I believed.
As a kid, I used to surf… but I always had to switch my stance just to keep my balance. I played soccer every day, but I couldn’t dribble properly. I practiced martial arts, yet my left side always needed extra training — it just didn’t respond the same way. When racing against my brothers and cousins, I already knew I would lose… but I still ran anyway. At home, I was known as the “clumsy one.” At school, I wasn’t even good at table tennis.
But there was one thing that never changed:
I always showed up.
I always felt different.
And I never understood why.
Even so, for every difficulty… there was a smile.
Getting My Diagnosis as an Adult
At 25, I finally understood. I realised that life had been preparing me, all along, for a daily challenge. It showed me how strong I was — even before I knew it. That “clumsy” kid… would become someone learning to be strong in ways that can’t be measured.
At the time, I was already married. I took a trip with my parents — who were no longer part of my daily routine — and that’s when something became clear. They noticed my unsteady walk. My speech sounded slurred, almost like I was drunk. Something wasn’t right.
Because I had an uncle with Parkinson’s, my father got worried. When we returned, I went to see his neurologist. He asked for several tests. And then, the diagnosis came: Friedreich’s Ataxia.
That was the moment my life changed direction.
A turning point.
The Day My Life Changed — And the Truth No One Talks About
My life didn’t change only because of the diagnosis. It started to change in the way people began to see me… and, even worse, in the way I almost forgot who I was.
At first, it wasn’t courage. It was confusion. Fear. And a heavy silence no one around me knew how to fill.
Before, I didn’t think about living. I just lived. After that… everything became calculated.
Every step became a decision.
Every movement became a risk.
Every outing became a strategy.
But the biggest change wasn’t physical. It was identity.
Because when your body changes, the world tries to convince you that you’ve become less. And if you’re not careful… You start to believe it.
I came close.
Close to reducing myself to a diagnosis. Close to accepting a smaller version of who I am.
But life — in its hardest way — taught me something else: Limitations are not the end of identity.
They are the beginning of a confrontation with it.
And I started to see. The looks. The discomfort. The lack of accessibility… and the excess of opinions.
Accessibility is Dignity
I’ll never forget a moment in my building. They installed a handrail on the ramp. Something basic. Something necessary.
And still, I heard someone say: “I don’t see why this was needed… it looks ugly.” In that moment, something became very clear to me:
Some people only see aesthetics… because they’ve never had to depend on dignity.
For those who need it, it’s not a detail.
It’s dignity.
We Must Never Forget Who We Are
My life changed because I was forced to slow down. But in slowing down, I realised something most people never do: Most people move so fast… they forget who they are.
Today, I fight every day not to forget. For myself. And for my children.
Because they don’t need a perfect father, they need a present one.
And presence… doesn’t depend on legs. It depends on choice.
That’s why I started writing. Today, I share my perspective through @vivercaf on Instagram, where I try to remind people of something simple — yet powerful: we must never forget who we are…even when life tries to rewrite our story without permission.
In the end, this isn’t just about what I lost.
It’s about what I refused to lose.
Written by: Tony Matos
Edited by: Meg Elmer
We would like to thank Tony for sharing his inspirational story with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.
If you would like to know more about Tony Matos, you can follow their Instagram @vivercaf where he shares honest reflections about identity, resilience, and living with disability. He encourages others to never forget who they are — even in the face of life’s challenges.